Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life

A dissertation presented to

the faculty of

the Scripps College of Communication of Ohio University

In partial fulfillment

of the requirements for the degree

Doctor of Philosophy

Nicole C. Eugene

August 2017

© 2017 Nicole C. Eugene. All Rights Reserved. This dissertation titled

Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life

by

NICOLE C. EUGENE

has been approved for

the School of Communication Studies

and the Scripps College of Communication by

William K. Rawlins

Stocker Professor of Communication Studies

Scott Titsworth

Dean, Scripps College of Communication

ii Abstract

EUGENE, NICOLE C., Ph.D., August 2017, Communication Studies

Sleeping Everywhere: Narrating How People with Narcolepsy Navigate Everyday Life

Director of Dissertation: William K. Rawlins

Research on narcolepsy tends to highlight negative features of the condition while not including the perspectives of people with narcolepsy. This dissertation sought to represent narcolepsy in a way that put the subjective experience of narcolepsy in conversation with the medical language about narcolepsy while collecting narratives of how people with narcolepsy navigate everyday life. A hidden disability like narcolepsy exists within contexts that may obscure apparent differences between individuals. An in situ approach to researching hidden disabilities considers the way physical and discursive contexts shape what is knowable about another person’s capacities. Narcolepsy causes people who have it to have difficulty in matching the spatiotemporal rhythms of society.

Using the feminist disability studies concept of misfit and performance studies concepts about uncovering hidden meanings and evocative writing I designed a research project that included in-depth interviews with people who have narcolepsy, participant observation with a local narcolepsy support group and autoethnographic writing. Case study interviews were analyzed using interpretive phenomenological analysis. The analysis portion of the dissertation includes one autoethnography on the intertwined relationships between identity, place and sleep and four chapters that highlight four places where people with narcolepsy wrestle with narcolepsy and the challenges of managing it. The narratives about narcolepsy highlight how meanings of narcolepsy are

iii socially constructed through communicative interactions around symptoms and treatment. The dissertation concludes by reflecting on how sleep medicine can play a larger role in the social construction of narcolepsy in everyday life by revising some of the language used in medical discourse and by improving patient and family education.

iv Dedication

This is dedicated to the loving memory of Peter Raposo.

v Acknowledgments

As a first-generation college graduate, I have a lot of people who I would like to acknowledge. In keeping with the narrative form, these acknowledgements will also tell the story of my growth as a scholar and as a person.

First, I would like to acknowledge my parents who discovered my sleepiness before I was diagnosed. My father’s endless curiosity and love of learning continue to inspire me in my research. I am especially thankful for my mother’s love and for her support of my adventures in learning throughout the years. I would also like to express my appreciation for having three beautiful sisters who have loved and supported me in all my endeavors—even if that meant they had to do the driving. I would like to acknowledge Pastor John Ogletree, Jr. whose love of religious scholarship made Sunday morning both spiritually fulfilling and intellectually stimulating while growing up. It was at his church where I met my two-other college-bound black young women who would become lifelong friends—Jannica Cox and Brittany Kennedy; thank you for your friendship throughout the years.

I would like to acknowledge Bruce Wade and Mona Philips at Spelman College for planting in me passion for research on social issues while also being exceptional models of in their teaching and service. While attending Spelman College, Ronald

McFadden invited me to participate in the Ronald McNair Scholars Summer Program at the University of Tennessee at Knoxville where I received encouragement to pursue a graduate education and eventually a PhD. The McNair Scholars Program is a federal

TRIO program designed to help prepare undergraduates for doctoral education and

vi thereby increasing the number of graduate degrees awarded to underrepresented populations.

I want to express my appreciation of Erin F. Labbie, at Bowling Green State

University (BGSU) for her role as the advisor for my Master’s thesis on the cultural dimensions of sleep in society. I am incredibly thankful for the guidance and mentorship

Matt Wolf-Meyer, a fellow BGSU American cultural studies department graduate.

Always one step ahead, he provided empathy as a person, who was keenly aware of the struggles I faced, while also encouraging autoethnographic reflections on what I experienced as a person with narcolepsy. At times, studying sleep can feel isolating, which is why I treasure having been invited by Brigittee Steger to share research from my

Master’s thesis at a workshop in Vienna with group of researchers from around who were studying sleep. I am indebted to Donald H. McQuarie for his gracious support of my research while at BGSU and his enthusiastic support of my return to academia after being away for several years.

During my academic hiatus in Houston, I had the opportunity to work with Carl

Lindahl and Pat Jasper, who founded and directed the Surviving Katrina and Rita in

Houston Project. I continue to strive towards the ideals that project actualized as a researcher and community member. I also must thank Diana Bowen who introduced me to communication studies while I scouted for books to sell as a self-employed bookseller.

She encouraged me to consider communication studies because of the many overlaps with American cultural studies and sociology.

vii My time at Ohio University has been a rollercoaster ride, and I really appreciate being able to share the some of the bumps and thrills with my friends Sarah Parsloe and

Zamzam Jama. I would also like to thank Sarah for her help during the writing process. I would be a hermit without Zamzam to pull me out of my shell to enjoy my time in

Athens—I have always needed people to remind me of the world outside of my work. I would have had a lonely first year in my PhD program if it was not for Aarti Arora’s mentorship and companionship. I would also like to recognize my friend and mentor

Jenny Nelson who made sure I did not feel alone in my unique differences. At Ohio

University, I have benefited greatly from mentorship and guidance from Ben Bates,

Judith Lee, Yea-Wen Chen, Adah Ward Randolph, Sherrie Gradin, Ron Jackson, and

Austin Babrow. I am also indebted to Henry Wood and Andew Ladd for their trust and support.

I must also express my appreciation for the support I received from the people at

Ohio University who help people with disabilities succeed as students and as instructors.

Daryl Purdy made it possible for me to thrive in the graduate program, and so I am forever grateful for his work and activism. I would also like to acknowledge Megan

Cameron, Jennifer Romero, and Kerri Griffin for their role helping me while at Ohio

University. I would like to thank Laura Ellingson for her mentorship and guidance as a fellow feminist health communication researcher with a disability. I am happy to also thank Michael Butterworth and the School of Communication Studies for providing financial support for my many of the trips to and from Columbus.

viii I also benefited from audience comments and conversations at Coe College and the University of San Francisco. I especially would like to thank Nate Hodges for sharing his stories of navigating his final year and for demonstrating how to use evocative autoethnography to address issues of health and inequality. I would like to express appreciation for thoughtful and emboldening feedback on Chapter Two I received from

Dan Strasser as a respondent at the 2016 Eastern Communication Association conference.

I also received valuable feedback and encouragement on Chapter Four from Julie Ann

Scott-Pollock, who I also treasure as a fellow communication and performance scholar interested in hidden disabilities.

My dissertation committee, Lynn Harter, J.W. Smith, and Risa Whitson have been courageous sources of inspiration and guidance during my time at Ohio University. My advisor, William K. Rawlins, has a has done a masterful job at setting the beat for this jam session, and I am honored to be able to keep the music playing throughout the rest of my measures.

ix Table of Contents

Page

Abstract ...... iii Dedication ...... v Acknowledgments ...... vi List of Tables ...... xiii List of Figures ...... xiv Chapter 1: Exploring Communication About Narcolepsy ...... 1 A Medical Description of Narcolepsy ...... 8 Narcolepsy with Cataplexy (Type 1) ...... 9 Narcolepsy without Cataplexy (Type 2) ...... 11 Psychological and Social Research on Narcolepsy ...... 13 Rationale for Researching Everyday Life with Narcolepsy ...... 15 Research Questions ...... 19 Overview of Chapters ...... 19 Chapter 1 Notes ...... 23 Chapter 2: Theoretical Framework ...... 27 Introducing Disability Studies and Neurodiversity ...... 28 Disability and Identity ...... 30 The Hope of Seeing Disability ...... 32 The Problem with “Seeing” Disability ...... 34 Defining Disability and Hidden Disability ...... 37 A Note on the Language of Invisibility ...... 42 Social and Cultural Research on Sleep ...... 45 Research on and in Contexts that Hide ...... 49 In Situ Research on Hidden Disabilities ...... 50 Performance and Performative Writing about Hidden Disability ...... 52 Performance Studies and Hidden Disability ...... 57 Chapter 2 Notes ...... 60 Chapter 3: Methods for Engaging Hidden Stories ...... 66 Narratives, Performance and Sensory Ethnography ...... 67 Support Group Participation ...... 74 x Embodied and In Situ Interviews ...... 81 Autoethnographic Reflections ...... 86 Crafting the Narratives ...... 89 Chapter 3 Notes ...... 92 Chapter 4: Hiding Sleep—Identity, Place, and Communication about Narcolepsy ...... 95 Ableism, Autoethnography and Place ...... 97 Chapter 4 Notes ...... 119 Chapter 5: At Work with Narcolepsy ...... 122 Penny’s Diagnosis Story ...... 128 At Work with Onlookers, Inattention, and Inflexibility ...... 135 The Optics of Naps and Sleepiness ...... 137 The Flexibility and Inflexibility of Space and Time ...... 143 Inattention, Delays, and Mistakes ...... 147 Conclusion ...... 157 Chapter 5 Notes ...... 164 Chapter 6: At Home with Narcolepsy ...... 166 Elaine’s Diagnosis Story ...... 168 At Home with Unpredictable and Misunderstood Sleepiness ...... 171 Control and Support at Home ...... 175 The Misunderstood Sleepy Self ...... 180 Conclusion ...... 182 Chapter 6 Notes ...... 183 Chapter 7: Driving with Narcolepsy ...... 184 Sable’s Diagnosis Story ...... 188 The Life Threatening and the Life Sustaining Meaning of Driving ...... 190 The Dangerous Narcoleptic Driver ...... 192 Strategies for Managing Danger ...... 196 Dangerous Sleepiness ...... 199 Dangerous Cataplexy ...... 202 The Isolated Narcoleptic ...... 206 Driving to Support and to be Supported ...... 207 Anything to Keep a Driver’s License ...... 211 Conclusion ...... 213 xi Chapter 7 Notes ...... 217 Chapter 8: Active with Narcolepsy ...... 220 Controlling the Body and Losing the Body ...... 226 Controlling the Body...... 229 Losing the Body ...... 235 Active with Narcolepsy ...... 237 The Wonderful Wizard of OZ and the Social Construction of Ability ...... 240 Conclusion ...... 246 Chapter 8 Notes ...... 248 Chapter 9: Conclusion ...... 249 What Narcolepsy Means in Everyday Life ...... 251 How Place Affects People with Narcolepsy ...... 255 How People with Narcolepsy Occasion Social Support in Specific Contexts ...... 257 How Exchanging Stories of Narcolepsy Assists in Coping with Narcolepsy ...... 259 Looking Forward ...... 260 Chapter 9 Notes ...... 261 References ...... 263 Appendix A: Interview Schedule ...... 278 Appendix B: Demographics Form ...... 285 Appendix C: Letter of Invitation ...... 286

xii List of Tables

Page

Table 1 Participant’s Demographic Information ...... 85

xiii List of Figures

Page

Figure 1: Post on Facebook ...... 79 Figure 2: The Learning Resource Timer ...... 151 Figure 3: Country road leading to Elaine's house ...... 166 Figure 4: Field across the street from Elaine's house...... 177 Figure 5: Photo of a truck hanging from bridge ...... 191 Figure 6: Sable's collage on narcolepsy ...... 216

xiv Chapter 1: Exploring Communication About Narcolepsy

Since I arrived a few minutes early, I waited in my car until 11:00 a.m. As usual, there were plenty of spaces beside the former industrial manufacturing building whose giant 25-pane windows now belonged to artists who rent out art studios in the building.

On this day, pastel cats sitting with their backs to us seem to be painted or pasted onto the side of the building—each time I come here something is different about the building, the parking, or the nearby buildings. This place is alive like that. The restaurant,

Strongwater Food and Spirits, is at the front of the gentrified building. It proudly retains many of the architectural features from when it was once the headquarters for the sanitary porcelain manufacturing company that built the building in 1901. Upon entering, I looked at the “EBCO” in the stone floor in the entryway and I started to wonder what the initials mean. While unsuccessfully searching for word combinations I was greeted by an unfamiliar person—a central Asian man with a lot of facial hair and donning the same artist vibe I have come to expect here.

“Hi, I’m here for the meeting” I tell him while pointing to claim our doorless room. These rooms used to be offices where the occupants could see employees come and go through the large glass windows that take up two walls. He has no idea what I am talking about. So, I attempt an explanation, “Every month a narcolepsy support group meets here.”

“Oh, okay. Do you need anything?”

Reaching into my bag to get my pad folio I tell him, “I need some tape to put up a sign.”

1 “I think I can find it. So, others are coming? What type of group did you say?”

I said, “It’s a narcolepsy support group. Speaking of which, do you know anything about the lighting? Do any of these lights work?” I say this while pointing to the light fixture with four tubes of florescent lightbulbs hanging from what might be a ten- foot ceiling. I add that, “It’s kinda weird for us to meet in such a dark room.” The room where we usually meet is lit from two shade-less lamps and from the flood of light that streams through the large windows in the front of the building. Despite the bright teal accent wall, the colorful chairs, and all the light from a bright sunny day, the room feels dark because of all the dark features—the black side wall, the black ceiling, the dark paintings, the dark art deco buffet, the dark floor, the dark finish on the wood that frames the windows, and the dark table.

He starts to look around the room for a switch, and when he does not find one, he says that he does not know what is going on with the lights. Then he leaves to fetch the tape.

While he is gone, I spot Noelle, the slim White woman, who wears her waist- length hair in a loose messy bun; she usually serves us and knows about the support group. After the awkward exchange with her co-worker, I appreciate her familiar presence all the more. She brings me the tape and offers to bring me one of their homemade ginger ales. With two pieces of tape, I put the paper onto the window to help newcomers find the meeting. The sign says, “Narcolepsy Not Alone.,”1 in pink highlighter.

2 When I turn around, I notice that the artwork on the accent wall changed since last month’s meeting. I move closer to the artwork on the side of the familiar large surrealist painting. Now there are four little paintings beside it. I wonder what was there before? I am also not sure if this globe was there in the past? It is hard to figure out what

I am missing, so I stop worrying about it. I head back to the high school style chair and pull out The New Yorker magazine and suddenly I am unsure if I should look friendlier for newcomers. I would hate for someone to feel like they are distracting me from reading. This is such an unlikely possibility, right? Yet, for a person who loathes waiting, this is an inevitable question because waiting usually means having time to ponder all the things that could go wrong, are wrong, and might be wrong. I am not good at waiting.

I look at my Apple watch again, and I regret the restaurant’s choice to play hard rock music this morning. Wondering who said they were coming, I pull out my iPhone to check the event posted on Facebook. Two unfamiliar names and two familiar names indicated they would come. What happened? Did they all just forget? Is 11:00 am too early?

As a couple enters the restaurant, I find myself creating a story about them and their search for the support group meeting. Even as they sit at a table, I imagine that they are going to wait to see if anyone else comes before deciding to join me. Again, this is a very unproductive line of thinking. Once I admit to myself that they were just customers, I am relieved to find that the truth did not accompany a sting of rejection. Soon, another person comes into the restaurant, and this time I do not begin to imagine that they are

3 headed this way as they glide past the doorway. I realize that 15 minutes have passed and

I am still here alone. A few minutes later I am offered another ginger ale, and I take it.

When Noel returns with it, she sympathizes with me and tells me that I am free to wait or leave. She also says that my drinks are on the house.

While playing Candy Crush, I eventually admit to myself that the meeting is not going to happen today. I am not as disappointed as I was the first time it happened.

Determined to make the most of this hour-plus trip to Columbus, I silence all the negative meanings I could take from this experience and instead choose to accept this trip and the story that emerges from it as an illustration of the unpredictable nature of both fieldwork and narcolepsy. Sitting in that darkly lit room, I started to toy with the idea of making this experience a more explicit part of the dissertation. When I return to the hotel room later that day, the seed of this idea matured into a decision use the story. I quickly scribbled fieldnotes about the details of the non-meeting before the vivid memories of the morning faded away.2

The story of sitting alone behind a sign that said, “Narcolepsy Not Alone” is a metaphor for what many people understand about narcolepsy—it is a story of people who are missing, because they are too tired, too forgetful, too busy, or too sleepy to participate in aspects of life. For people who do not have narcolepsy, it can be simply understood as a chronic health condition that creates absences. Like the little changes I found in each visit to Strongwater, it may be hard to account for what is absent and there is seldom any clues to help. However, for people with narcolepsy it is an absence, but it is also much more than all the absences. The subjective experience of living with narcolepsy is full of

4 voyages into places few people know exist—the spaces between awake and sleep, between subject and object, between action and inaction.

Many people regard sleep as an absence where meaningful life ends and an experience that is like death unfolds. In a 24/7 culture the trend is for people to sleep less and less to accomplish the ever-expanding things one can or must do.3 Narcolepsy creates a type of social absence because being too sleepy means that people living with narcolepsy are not able to do as much and are physically and/or mentally absent from events and activities they would like to participate in. This is a type of non-experience because sleep, sleepiness, or other symptoms may cause them to be physically absent.

The other type of absence is based on being unable to participate in the way the absence is interpreted. In the same way that I experienced the absent group members, people with narcolepsy who are not able to show up or are tardy leave others to makes sense of the absence with little or no input from the absent party. Not being able to participate in the way someone makes sense of your placid body compounds the social isolation narcolepsy imposes. By creating an account of what narcolepsy means to the people who have it, I seek to fill in these absences by doing what the sleeping narcoleptic cannot do—that is, I will be the narcoleptic that actively shapes how their experience is understood. In addition to shaping how the experiences of others with narcolepsy are understood, I am able to shape how my narcolepsy is understood through phenomenological and autoethnographic writing about narcolepsy.

Living with narcolepsy creates absences in my life that I would like to access, to interrogate and to shape. However, this possibility is itself circumscribed by my

5 narcolepsy. In other words, I am absent and, therefore, unable to shape how my absence is experienced. Instead of being satisfied with making sense of how others understand my narcolepsy post hoc or a priori, this dissertation allows me to stand in the shoes of the other—usually the non-narcoleptic—in my relationship with others with narcolepsy. I can hear the stories of sleep, sleepiness, and other symptoms and make sense of them much in the same way others make sense of accounts of my sleep, sleepiness, and other symptoms. It offers me an opportunity to listen and hear what others hear and by listening also to actively participate in shaping the meaning of narcolepsy as a researcher.

However, while I may stand in the shoes of a non-narcoleptic, I can only ever see and hear from the perspective of someone who lives with narcolepsy.

Sleep doctors and sleep researchers labor to restore the physiological absences narcolepsy creates by treating the body and the pathology. Medical treatment successfully manages most of the debilitating aspects of narcolepsy, and this should never be minimized or undermined. The value medical treatment creates in the lives of people with narcolepsy is immeasurable. However, with the current state of understanding about narcolepsy treatment tends to operate like a type of Band-Aid; it protects the body from worsening. In protecting people with narcolepsy from the most debilitating symptoms, medical communication about narcolepsy inadvertently contributes to turning them into objects that lack agency in shaping the way narcolepsy is understood.4 Patients’ voices and experiences are largely absent from the medical literature on narcolepsy. Since the invention of electroencephalography (EEG) and other tools for interrogating the patient’s body, doctors have replaced patient narratives and self-reports with measurements taken

6 directly from the body. The vulnerable and deeply disempowering symptoms of narcolepsy are voiceless in both everyday life and medical contexts. Instead of patient voices, the ricocheting line of an electroencephalography (EEG) tells sleep specialists what is and is not happening in the brain of someone with narcolepsy. In various medical fields, narrative medicine has sought to repair the resulting chasm between the body and the voice of the patient. There are a number of ways to reunite medical knowledge with subjective reality. This dissertation aims to carve a new path between the pathological body and the narrative life by telling the stories of people with narcolepsy and filling in many of the voices that are missing from medically accurate accounts of life with narcolepsy. The meaning of narcolepsy—that is the meaning of sleep, sleepiness, and the other symptoms of narcolepsy—is shaped by complex, interwoven interactions that are specific to individuals and the places they occur. By communicating about narcolepsy in the places that give the condition meaning, we can come to know what narcolepsy means in the lives of those who live with it.

This chapter introduces narcolepsy and discusses the goals of this project, which are twofold: to create an account of narcolepsy that recognizes its unique absences, and to focus on narratives about narcolepsy using performative writing that reveals how people with narcolepsy navigate everyday life. First, I will provide a detailed description of narcolepsy based on medical literature. Next, I will briefly review research on the social aspects of narcolepsy that this project is extending. This chapter also provides the rationale for my research project and the research questions informing my inquiry.

Finally, I will provide a summary of the chapters that follow.

7 By following the opening phenomenological and metaphorical narrative about narcolepsy with a medical approach to communicating about narcolepsy, I am highlighting the way form and genre operates in constructing the meaning of narcolepsy.

Like the opening narrative, the medical description is also a story about narcolepsy. Most of the medical story, which has the support and legitimacy of medical institutions and all the infrastructure that supports medicine, as I argued above, re-inscribes the absence of narcolepsy by not including the subjective voices of people with narcolepsy. And yet, this bleak and emasculating story is something people cling to upon diagnosis because without the story and language offered by sleep medicine, most of them would have no words at all to communicate about narcolepsy.

A Medical Description of Narcolepsy

Approximately 1 in 2000 Americans have narcolepsy; in Japan, the rate is 1 in

600; and in Israel the rate is 1 in 500,000.5 To put the American rate into context, it is an incidence rate that is half that of multiple sclerosis, and it is about a quarter of the incidents of Parkinson’s disease and five times the incidence rate of cystic fibrosis.6

Narcolepsy typically develops when the patient is a teenager or in their 20s7 and can worsen at a later age. Often, diagnosis is delayed by an average of 10 years because people with narcolepsy are frequently diagnosed with other conditions before seeing a sleep specialist and receiving the correct diagnosis8. Narcolepsy typically has a gradual onset but the onset can be sudden or be due to other conditions.9 Unfamiliarity with the condition among health care providers contributes to the significant length of time that typically precedes diagnosis and subsequent treatment10. Narcolepsy is a neurological

8 sleep disorder, and it is a lifelong chronic condition that is caused by an autoimmune response11. Narcolepsy occurs in both sexes with a slight preponderance of males.12

Narcolepsy is linked to mechanisms that control sleep/wake cycles.13 There are two main phases of sleep: REM sleep and non-REM sleep. REM stands for rapid eye movement, which is what happens when sleepers are dreaming. During REM sleep the brain’s metabolism exceeds what happens when awake, and muscle tone is absent in legs and arms to not act out dreams.14 Non-narcoleptics will spend 90 minutes in Non-REM sleep, a quiet phase of sleep when the brain is not consuming a lot of energy.15 The EEG sleep tests that diagnose narcolepsy look for signs that the sleeper is skipping non-REM sleep and going directly to REM sleep in under 8-minutes.16

Narcolepsy with Cataplexy (Type 1)

There are two types of narcolepsy: type 1 is otherwise known as narcolepsy with cataplexy, and type 2 is often called narcolepsy without cataplexy.17 I will use the more familiar terms for the dissertation. Narcolepsy with cataplexy represents 15% to 25% of the population of people with narcolepsy.18 Narcolepsy with cataplexy is regarded as being more severe, and more is known about the physiopathology of this form of narcolepsy. Narcolepsy with cataplexy is caused by a lack of hypocretin, a chemical created in the hypothalamus and involved in sustaining alertness and controlling when

REM sleep occurs.19 People may be diagnosed with type 1 narcolepsy even though they do not have cataplexy because the definitive trait for this form of narcolepsy is decreased hypocretin.20 The gene for this type of narcolepsy has been identified in dogs, so

9 researchers are able to give a dog narcolepsy with cataplexy to study the mechanisms at work.21

Cataplexy is an intriguing example of how thoughts affect neurological function.22 It is defined as the sudden loss of bilateral muscle tone in response to a strong emotion, which may be referred to as an emotional trigger.23 Cataplexy can look like involuntary eyes closure, knee weakness, slurred speech, inability to hear, head droop, jaw slacking, facial weakness, or the total loss of muscle tone throughout the body.24

These episodes, or “attacks,” may last a few seconds or a few minutes during which consciousness is clear, memory is uninterrupted and breathing is normal.25 The elusive nature of cataplexy—since it happens only with specific triggers so doctors will not likely see it happen, and patients have difficulty describing the experience—may contribute to delayed diagnosis.26 Women are more likely to develop cataplexy than men.27 The decreased muscle tone of cataplexy is similar to the decrease in muscle tone during REM sleep.28 More than any other emotion, laughter is the most likely trigger of cataplexy; other positive emotions may also be a trigger.29 The frequency of cataplexy can range from less than once a month to more than 20 attacks a day.30 People diagnosed with narcolepsy with cataplexy also experience the symptoms of narcolepsy without cataplexy. In the research literature, common pathophysiology between narcolepsy with cataplexy and narcolepsy without cataplexy is debated and is thought improbable because so little is known about the pathophysiology of narcolepsy without cataplexy.31

10 Narcolepsy without Cataplexy (Type 2)

The primary symptom for narcolepsy without cataplexy, which hereafter will be referred to as narcolepsy, is excessive daytime sleepiness or EDS. EDS is the most severe symptom and is usually the reason patients seeks medical attention.32 This may also be the first symptom to appear.33 Sleepiness can gradually increase in intensity or it can be without prodromal symptoms—the sudden onset sleep without warning are called “sleep attacks.”34 The term sleep attacks has also been used to describe moments of sleepiness that may not result in sleep.35 In his description of the epidemiological and clinical features of narcolepsy with cataplexy, Yves Dauvilliers describes EDS in these terms:

Daytime sleepiness occurs daily, recurring typically at 2-h intervals, exacerbated

during inactivity, with large variability between patients. Most of those sleep

episodes are irresistible, of short duration and frequently associated with

dreaming. . . . Severe sleepiness can also lead to unconscious microsleep episodes

or lapses.36

This description of EDS applies to both types of narcolepsy. The third edition of the

International Classification of Sleep Disorders (ICSD-3), published by the American

Academy of Sleep Medicine, describes hypersomnolance, or daytime sleepiness, as the

“inability to stay awake and alert during the major waking episodes of the day, resulting in periods of irrepressible need for sleep or unintended lapses into drowsiness or sleep.”37

People with narcolepsy experience excessive daytime sleepiness meaning that excessive sleepiness has occurred at least over a three month period.38 The severity of sleepiness can vary, and sleepiness is more likely to occur in sedentary places, boring and

11 monotonous situations, and might be accompanied by memory lapses, automatic behavior, drooping eye lids, blurred vision, or double vision.39 While other conditions may include EDS, nowhere does it appear more severe than in narcolepsy.40

Other symptoms include: sleep paralysis, hypnagogic hallucinations, automatic behavior, and nocturnal sleep disruption.41 Sleep paralysis is when, upon waking or falling asleep, someone finds that they are unable to move. It is transient, meaning the ability to move returns after a one or more minutes.42 The ICSD-3 defines hypnogogic hallucinations as, “vivid dreamlike experiences occurring in the transition from wake to sleep. Typically, hypnogogic hallucinations have a multimodal or ‘holistic’ character, often combining visual, auditory and tactile phenomena”43 People with narcolepsy are more than twice as likely to be obese.44 Other common co-morbidities include anxiety, fatigue, and other sleep abnormalities.45 People with narcolepsy have high rates of depression, with some studies reporting that over 50% of participants experienced this comorbidity.46 Compared to non-narcoleptics, people with narcolepsy are two to four times more likely to develop psychiatric conditions.47

Narcolepsy is treated with stimulant drugs to suppress the effects of daytime sleepiness; tricyclic antidepressants are used to treat cataplexy; and hydroxybutyrate has been used to treat both symptoms.48 Sodium oxybate (Xyrem)is also used to treat disrupted sleep and alleviate EDS. There are some cognitive behavioral therapy approaches to treatment, but guidelines for these approaches still need to be developed.49

In 2009, during the influenza pandemic, a vaccine for H1N1 was developed and distributed in various countries in Europe. Clinicians in Finland and Sweden began to

12 notice an increase in the incidents of narcolepsy and identified a relationship between the increase and vaccinations for the influenza vaccine in patients in England, Ireland,

France, and Norway.50 As of 2015, over 200 children and adults developed narcolepsy as a result of the Pandemrix vaccination.51

Psychological and Social Research on Narcolepsy

Compared to non-narcoleptics, people with narcolepsy experience higher levels of health-related stigma and feelings of social rejection, financial insecurity, internalized shame, and social isolation.52 According to the ICSD-3, narcolepsy is socially isolating and patients, “have a tendency to fail in school and are often dismissed from their jobs.”53

In a study conducted using controls and patients from North America, Asia, and Europe, researchers found that 75% of the participants indicated that narcolepsy created occupational problems.54 Narcolepsy has negative effects on work performance, promotion, earnings, and facilitated fears about job loss.55 Accidents at work and at home were attributed to sleepiness or drowsiness. Compared to non-narcoleptics, narcolepsy has negative effects on education, recreation, and personality; some researchers find that the life effects of narcolepsy are more serious and pervasive than those of epilepsy.56 In another study of people with narcolepsy in Germany, researchers found that they had significantly lower than control group scores in all eight of the domains of health-related quality of life.57 These were correlated with employment status, living with a partner, excessive daytime sleepiness, and professional development.58

Research on the intersection of gender and narcolepsy points to how culture is at work in how people experience the condition. Men and women present with similar

13 symptoms, but Won et al. conducted a study and found that 88% of men were likely to be diagnosed by the age of 16 compared to women, who were more likely to be diagnosed by the age of 28.59 This disparity occurred despite similar onset ages and women’s higher objective sleepiness and higher rates of cataplexy.60 In other words, women were more likely to self-medicate with caffeine and find ways to adapt to the daytime sleepiness while men were quicker in presenting symptoms to a doctor. In their study, over a third of the men and women decreased their social activities because of sleepiness. Men reported significantly more negative impacts on relationships than women (74.1/44.1).61 This research suggests that cultural concepts about gender influence aspects of how the condition is subjectively experienced.

My review of existing research on narcolepsy discovered two qualitative studies that sought to look at narcolepsy from the perspective of the patients. Sarah Wilson et al. compared the post-treatment adjustments of people with narcolepsy with cataplexy to post-surgical epilepsy patents and found that both groups gave similar descriptions about the impact of the treatment on psychological, behavioral, and sociological aspects of everyday life.62 For her dissertation at Walden University, Chantel Jones conducted a phenomenological study on perceptions of employed people with narcolepsy.63 Jones’s research sample size was 15 people and involved interviews and questionnaires. Her research revealed that her participants frequently thought that their co-workers had misconceptions about their level of alertness and sleepiness.64 She also found strong themes around supervisors’ willingness to provide accommodations and ability to understand narcolepsy.65 The most frequent barriers to productivity were the sense that

14 they had an invisible disability, the inability to focus, sleep attacks, and tardiness.66 She also found that many of the participants thought that their work places were supportive and felt lucky to have their jobs.67 While Jones’s study had a number of limitations, this type of qualitative research begins to move the experience of narcolepsy out of the hands of medical experts and public health researchers and allows people with narcolepsy a voice to communicate about how they think narcolepsy affects their lives.

Lastly, I would like to address some of the terms used in discussions of narcolepsy. The word narcolepsy means sleep seizure.68 While narcolepsy has at times been called an illness or a disease, people who have it and those who work with people who have it tend to call narcolepsy a condition or a sleep disorder. Although it is considered type of chronic illness, the term illness refers to an individual’s perceptions of their symptoms and how they are experienced by family members and themselves.69

Furthermore, while the term disease refers to changes in the structure or function of a body, this is a term is also rarely if ever used to in contemporary literature or discussions of narcolepsy.70

Rationale for Researching Everyday Life with Narcolepsy

My story of showing up to a narcolepsy support group meeting to find that no one came, and the detailed medical description of narcolepsy are told from two different epistemologies and therefore both accomplish very distinctive forms of knowledge creation. The story that opens the chapter relies on my subjective experience, embedded meanings, material resources and metaphor. It is an emplaced story that represents a singular perspective that is unique to my experience. On the other hand, the medical

15 description of narcolepsy is an intricate amalgamation of information and research about a pathology that aims to be void of feelings and “bias” in accordance with a positivist paradigm.

Medical and scientific language about narcolepsy provide a great deal of legitimacy and validation for people with narcolepsy, which is a privilege not afforded to people with chronic fatigue syndrome or other syndromes since the designation

“syndrome” indicates the absence of medical legitimacy.71 Yet, however empowering it may seem, medical jargon about sleep disorders often fails to help people with narcolepsy accomplish the work of communicating about their condition to family, friends, co- workers, and employers.72 Nor does it help make people with narcolepsy feel empowered to live in a world where sleep is devalued and sleepiness is misunderstood.

In Susan Wendell’s book, The Rejected Body, she describes how the authority of medicine over people’s ability to communicate about their own bodies is a type of epistemic invalidation because medicine can undermine our confidence in our ability to know our own bodies in the space between the words used to describe personal experiences and the words used in medical descriptions.73 Before being diagnosed with narcolepsy, many of my participants, and myself included, were told “There’s nothing wrong with you” or were misdiagnosed, compelling a choice between distrusting our own knowledge about our bodies or distrusting the judgment of a medical professional. Once diagnosed, however, people with narcolepsy are released from epistemic invalidation.

The jargon used to describe narcolepsy above was created to accomplish the goals of researchers and doctors. According to Matt Wolf-Meyer, a medical anthropologist and

16 the author of Slumbering Masses, medical interest in treating narcolepsy was motivated by an impulse to defend patients against dominant understandings of narcoleptics as being “willfully lazy.”74 Sleep medicine asserted that, rather than being a choice, narcolepsy occurs because of a problem of the nervous system. However, sleep medicine is not without cultural biases; rather, the way meanings of sleep, sleepiness, and alertness have evolved in that domain reflect the sociohistorical biases of the men who were influential in establishing the ideas, the language, and the technological tools of sleep medicine.75 According to Wolf-Meyer:

Restless legs syndrome, narcolepsy, and REM behavior disorder are all

problematic at the turn of the twenty-first century because of what they index

socially. . . . and variation from sleep’s consolidation and hegemony is not simply

resistance but also disorder.76

In embracing medical language about sleep, people with narcolepsy also embrace the underlying logic it presents: which is that the malleability of sleep must be put in alignment with spatiotemporal rhythms of society by using medicine instead of expecting society to become more malleable to better accommodate irrepressible sleepiness.77 In other words, sleep medicine has protected narcolepsy from moral degradation, but in accepting this assistance, they are also agreeing to value and understand sleep primarily based on how it affects social realms of everyday life.

Perhaps there is a third way forward? Are there ways to communicate about narcolepsy that are not imposed by intransigent institutional jargon? Is there a way to communicate about narcolepsy in a way that uses medical knowledge, personal narrative

17 and metaphor without invalidating or delegitimizing these epistemologies? In exploring how people with narcolepsy understand narcolepsy, we can resist rendering them, once again, as passive patients by putting the subjective experiences of narcolepsy in conversation with the medical language of narcolepsy. This dissertation wants both to be a bridge and build a bridge between these two ways of knowing about narcolepsy, while making a substantive contribution to the social and cultural study of sleep.

In approaching the topic of narcolepsy, I recognize that representation is central to what types of knowledge are produced. I sought to design a research project that created representations of narcolepsy that would help to fill in many of the holes that more empirical research on the topic has created. Accordingly, the central problem this dissertation seeks to address is the question of what narcolepsy means to the people who live with it. How do they experience the absences? Or how does it feel to have found the right job, spouse, or friend?

The rationale for this project is two-fold: (1) to use performative narratives developed through doing a peer research project to fill in some of the absences that narcolepsy creates in the lives of people who experience them, and (2) to take a disability studies approach to examining everyday life with narcolepsy. Performance studies and feminist disability studies provide a theoretical framework for understanding narcolepsy as a hidden disability that can be examined as an interaction between bodies and environments. By situating narratives within the lived context of the individual’s history with the condition and within the sensory details of the interview, narratives about narcolepsy shed light on what the condition means to the people I have interviewed.

18 Research Questions

I began this dissertation with a set of assumptions based on my ongoing relationship to narcolepsy and previous research done through a pilot study. In short, I believe that performative writing provides a way to communicate about health conditions and social identities that are otherwise difficult to understand or appreciate.

Consequently, I designed a research project that used sensory ethnographic methods of participant observation, in-depth interviews, and autoethnographic writing to explore how focusing on the relationship between narcolepsy and place can create thick descriptions of what narcolepsy means in everyday life. Hence, my research questions are:

(1) What does narcolepsy mean in everyday life?

(2) How does place affect people with narcolepsy?

(3) How do people with narcolepsy occasion social support in specific contexts?

(4) How does exchanging stories of narcolepsy assist in coping with narcolepsy?

Overview of Chapters

Chapter Two explores concepts of disability and defines hidden disability as a way of supporting the argument for research on neurodiversity conditions using methods that recognize and avoid ableist and Cartesian concepts. I present a definition of hidden disabilities while critiquing the tendency to focus on the visibility of a hidden condition. I also discuss what it means to take a performance approach to sensory ethnography and autoethnography. Finally, this chapter explores examples of in situ approaches to research on hidden disabilities.

19 Chapter Three tells the story of what I did to research and write my dissertation.

Three methods were used: participant observation of the Columbus area support group, in-depth semi-structured and unstructured interviews with people who have narcolepsy, and autoethnographic writing about my relationship to narcolepsy and my experiences as a researcher. I use my first interview to narrate how I met participants and conducted interviews. This chapter also includes demographic information about the people I interviewed. Next, this chapter discusses the sampling strategy, confidentiality, and strategies for managing data in my research. I used interpretive phenomenological analysis (IPA) to review my transcriptions. IPA encourages a case study approach to writing up the findings that emerged in this dissertation.

In Chapter Four, I personally reflect on the choices to reveal or conceal narcolepsy and sleep while considering ideas about ableism and the role of place. This autoethnography ultimately argues that place and hidden disability have a complex, contradictory, and interdependent relationship. This chapter will use autoethnographic reflections, phenomenological description, and extant research to argue that hidden disabilities exist in contexts that obscure how bodies differ. Intimate memories of dealing with sleepiness and taking naps provide an account of narcolepsy that situates the micro- details of a sleep disorder within larger cultural stories about what being a PhD student means and what a strong black woman should mean.

Chapter Five is a case study of my time with Penny, who is married and is 29 years old, is a newly diagnosed woman with narcolepsy with cataplexy, who was previously diagnosed with ADHD, anxiety, and depression. When she began to fall

20 asleep during the day while on stimulants for ADHD, her doctor suspected that Penny may have a sleep disorder. Penny chose to tell me more about her experience of having narcolepsy at work as an elementary school’s speech pathologist, and so I conducted her second interview there. Her stories of working with narcolepsy, one semester undiagnosed and one semester diagnosed, highlight three dimensions of experiencing narcolepsy at work: the presence of onlookers should one become sleepy or take a nap, the difficulty of working with sleepiness, inattention and other impairments, and the inflexible and flexible dimensions of work and its environment.

Chapter Six voices Elaine’s narrative and illustrates what it means to have narcolepsy at home. I conducted only one interview with her, during which I asked about her home and saw that her story of having narcolepsy entails two distinct stories. One story involves working while narcoleptic, and the other is the story of being a mother of young children while figuring out what narcolepsy means for her life and her family. This chapter will focus on the latter story but also recognizes that her understanding of what her home affords is based on comparisons to what her work affords. For Elaine, experiencing narcolepsy at home involves moments of fulfillment and moments of discontent with herself and others. For many of the people I interviewed, home was a site of tension, so I also explore the stories of being home with narcolepsy from other interviewees.

Chapter Seven focuses on the story of Sable, who gave up driving over a decade ago because of narcolepsy and multiple sclerosis. Sable lives with her husband and receives disability retirement payments. Her diagnosis story details what it was like to

21 talk about narcolepsy before popular culture depictions started to shape preconceptions about the condition. Sable described why she continued to drive despite her crashes and her uncontrolled cataplexy. Before giving up driving, Sable experienced conflicting feelings about driving with narcolepsy. Sable’s ambivalence ended when the issue of immobility was resolved with the help of a co-worker and a supportive husband.

Chapter Eight follows the story of Cynthia, who is an African American woman with narcolepsy that works for her family’s funeral home. Cynthia wanted her second interview to be conducted at the ballet studio she attends. Her story highlights the struggle to manage medication side effects and the common comorbidity of depression.

When dancing, her narcolepsy is backgrounded, and she feels unimpeded by it in this arena. Other interviewees highlighted the way they cherish being physically active by skateboarding or wind surfing. This chapter ends with my story of going to The

Wonderful Wizard of OZ ballet where Cynthia played the Lion. I reflect on the story in terms of how it connects to my project, while also discussing how the original story of

The Wonderful Wizard of OZ highlighted the social construction of disability.

Chapter Nine reflects on some of the lessons I learned about communicating about narcolepsy before returning to the research questions. In the discussion on the meaning of narcolepsy, the social construction of reality is used to facilitate a better a more sophisticated understanding of how narcolepsy may come to mean different things to different people. This chapter revisits many of the concepts from disability studies and performance studies to reiterate how messages about narcolepsy participate in producing enabling or disabling environments. The dissertation closes with an exploration of how

22 the narratives about narcolepsy presented here help with imagining a world where people like me and my participants are better understood and are offered more options when navigating everyday life.

Chapter 1 Notes

1 Project Sleep, “Narcolepsy: Not Alone.” This phrase is the name of a narcolepsy photo project that Julie Flygare put together and it is used in information about the support group meetings so people will know where exactly the group is in the restaurant. 2 Only much later did I recognize that the group’s Facebook page itself may be a major reason for low participation in face-to-face meetings because the page is always there offering new and old posts and comments to read and respond to. 3 Crary, 24/7, 9. 4 See for example, Dement, The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection between Health, Happiness, and a Good Night’s Sleep, 206. Dement encourages doctors to prescribe amphetamines as if it was insulin for a diabetic. Adding that the goal of treatment is to “achieve as normal a life as possible.” It is also worth noting that he uses terms like “victim of narcolepsy” and “suffering” when describing a member of the National Commission on Sleep Disorders Research. 5 Siegel, “Narcolepsy,” 77. 6 Ibid. 7 Ibid.; Dauvilliers, Arnulf, and Mignot, “Narcolepsy with Cataplexy,” 499. 8 Kryger, Walld, and Manfreda, “Diagnoses Received by Narcolepsy Patients in the Year Prior to Diagnosis by a Sleep Specialist,” 36. 9 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 156. There are cases of narcolepsy Type 2 being attributed to medical conditions such as tumors or sarcoidosis of the hypothalamus, autoimmune or paraneoplastic disorders, multiple sclerosis, Parkinson’s disease, head trauma and others. At my first support group meeting I met a woman whose doctors believed her narcolepsy was a result of a head trauma. 10 Thorpy and Krieger, “Delayed Diagnosis of Narcolepsy,” 502. 11 Dauvilliers, Arnulf, and Mignot, “Narcolepsy with Cataplexy,” 499. 12 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 149,157. 13 Siegel, “Narcolepsy,” 77. 14 Ibid. 15 Ibid. 16 Ibid.; Dauvilliers, “Narcolepsy with Cataplexy,” 500. The tests for narcolepsy includes the multiple sleep latency test (MSLT) which involves having a person take naps during the day while monitored by a polysomnography. The genetic test is only supportive of a

23

narcolepsy diagnosis because the genotype is neither necessary nor sufficient for a diagnosis. In the dissertation, I will specify who has narcolepsy with cataplexy when it is appropriate. 17 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 145. Narcolepsy type 1 and narcolepsy type 2 replaced narcolepsy with cataplexy and narcolepsy without cataplexy because of the concept that the absence of hypocretin (orexin) is a more precise way of differentiating between the two types of narcolepsy. I am using simply “narcolepsy;” “narcolepsy” will also be used when referring to both forms of narcolepsy throughout the dissertation. Some of the academic journal publications have discussed both types of narcolepsy using this convention. 18 Ibid., 157. 19 Ibid., 145. 20 Ibid., 146. 21 Siegel, “Narcolepsy,” 76. 22 Krahn et al., “Characterizing the Emotions That Trigger Cataplexy,” 45. 23 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 147. 24 Krahn et al., “Characterizing the Emotions That Trigger Cataplexy,” 45, 49. 25 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 147–48. 26 Won et al., “The Impact of Gender on Timeliness of Narcolepsy Diagnosis,” 93. 27 Ibid. 28 Krahn et al., “Characterizing the Emotions That Trigger Cataplexy,” 46. 29 Ibid. Other likely positive emotional triggers that may cause cataplexy are: hearing a joke, feeling excited, feeling elated, remembering a happy moment, or experiencing an unspecified emotional event. 30 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 148. 31 Dauvilliers, “Narcolepsy with Cataplexy,” 437. 32 Ibid., 338. 33 Ibid. 34 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 143. I take issue with the language of “sleep attacks,” for several reasons. I have rarely experienced sleep without a sense of sleepiness that proceeded it and the literature on narcolepsy tends to phrase the condition in dramatic terms ignoring the more mundane yet disabling experience of excessive daytime sleepiness. The language of “attacks” relies on military metaphors of disease and illness and belongs in the same list as words like “suffers from” “victim of” which is used less in contemporary literature but can be found in publications about narcolepsy written before in the earlier part of the century. People with cataplexy, on the other hand, might agree with and use “cataplectic attack,” and I have less of a reservation in that context. Nevertheless. terms like “episode” are preferable. 35 Merritt, Cohen, and Smith, “Learning Style Preferences of Persons with Narcolepsy,” 24

115. In describing the topic of narcolepsy and learning the authors state, “For example, during a sleep attack, people may concentrate on trying to stay awake rather than on the learning at hand.” There is ambiguity about the meaning of the term “sleep attack” and therefore it is rarely used in literature about narcolepsy. I also note my reservations in endnote 34. 36 Dauvilliers, “Narcolepsy with Cataplexy,” 338; Dement, The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection between Health, Happiness, and a Good Night’s Sleep, 14. Dement describes a vivid scene that instigated his life-long interest in sleep research where a test subject was sleep deprived and experiences microsleep episodes while monitored by a EEG. 37 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 143. 38 Ibid., 144. 39 Ibid., 143,156. 40 Mayer, Bassetti, and Dauvilliers, “Treatment Options in Narcolepsy,” 987. 41 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 148. 42 Ibid. 43 Ibid. 44 Ibid. 45 Ibid., 149. 46 Won et al., “The Impact of Gender on Timeliness of Narcolepsy Diagnosis,” 89. 47 Flores et al., “The Humanistic and Economic Burden of Narcolepsy.,” 401. 48 Dauvilliers, Arnulf, and Mignot, “Narcolepsy with Cataplexy,” 499. 49 Marín Agudelo et al., “Cognitive Behavioral Treatment for Narcolepsy,” 30. 50 Barker and Snape, “Pandemic Influenza A H1N1 Vaccines and Narcolepsy: Vaccine Safety Surveillance in Action.,” 227; American Academy of Sleep Medicine, International Classification of Sleep Disorders, 149. 51 Lundgren, “Narrating Narcolepsy—Centering a Side Effect,” 150. 52 Kapella et al., “Health-Related Stigma as a Determinant of Functioning in Young Adults with Narcolepsy,” 6. 53 American Academy of Sleep Medicine, International Classification of Sleep Disorders, 157. 54 Broughton et al., “Life Effects of Narcolepsy in 180 Patients from North America, Asia and Europe Compared to Matched Controls,” 299. 55 Ibid. 56 Ibid. 57 Dodel et al., “Health-Related Quality of Life in Patients with Narcolepsy,” 733. The health-related quality of life domains are: (1) physical functioning, (2) role limitations due to physical problems, (3) role limitations due to emotional problems, (4) social functioning, (5) mental health, (6) energy/vitality, (7) bodily pain, and (8) general health perception. 58 Ibid. 59 Won et al., “The Impact of Gender on Timeliness25 of Narcolepsy Diagnosis,” 92.

60 Ibid., 93. 61 Ibid., 92. 62 Wilson et al., “Original Article: Psychosocial Adjustment Following Relief of Chronic Narcolepsy,” 255. 63 Jones, “Perceptions of Employed People with Narcolepsy,” 2. 64 Ibid., 65. 65 Ibid., 66. 66 Ibid., 68. 67 Ibid., 73. 68 Wolf-Meyer, The Slumbering Masses, 43. 69 Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 10. 70 Ibid. 71 Japp and Japp, “Desperately Seeking Legitimacy: Narratives of a Biomedically Invisible Disease,” 114. Japp and Japp note that the term “syndrome” is used to denote the “invisibility of causal agents.” 72 Young, “Transcript of FDA Narcolepsy Public Meeting on Patient-Focused Drug Development.” 73 Wendell, The Rejected Body, 122. 74 Wolf-Meyer, The Slumbering Masses, 76. 75 Ibid., 76–77. Wolf-Meyer highlights William Dement, Nathanial Kleitman as being the two who most laid the foundation for sleep medicine while also highlighting the pre- scientific literature on sleep hygiene that promoted sleep practices that were expressly Protestant. 76 Ibid., 77. 77 Ibid., 78.

26 Chapter 2: Theoretical Framework

When I first approached the question of what narcolepsy means in everyday life I had to choose between the health communication framework typically deployed to research chronic illness (i.e. concepts of stigma, label management, privacy management) and a disability studies approach to examining how bodies are marginalized and oppressed. I chose the framework of disability studies because it offered language to critique the concepts I am using. However, where does narcolepsy fit into discourses on disability? In some ways, it is invisible/hidden, but experiences of cataplexy are very visible. And how can I approach my experiences and the experiences of others as valid epistemic sources of information about the meaning of narcolepsy? Lastly, can I define disability in a way that recognizes how some people with narcolepsy are disabled by it while others are not? This chapter outlines the theoretical framework used in my study of narcolepsy in everyday life.

I will first discuss the development of disability studies before exploring the problems inherent to focusing exclusively on issues of visibility. Next, I will define hidden disabilities as being context bound. Conventional understandings of sleep are involved in how narcolepsy is experienced; therefore, I will review research on the social and cultural dimensions of sleep. Performance studies offers a way to approach a subject in relationship to its context, and so I will discuss the research and ideas from performance studies that inform this project. Lastly, I will share examples of research that also takes an in situ approach to researching hidden disabilities before turning to discuss how a performance studies approach to hidden disabilities facilitates an attunement to the

27 contexts that hide, reveal, construct, and define what it means to live with a condition like narcolepsy.

Introducing Disability Studies and Neurodiversity

People with disabilities are the largest minority group in the U.S., and it is a group that anyone can join with little notice or choice in the matter because everyone is vulnerable to debility.1 People who have different embodiments—disfigurement, medical conditions, etc.—have been the subject of poking, prodding, disciplining, distrust, and dismissal throughout history. Until recent years, people did not identify with the label

“disabled,” rather it was crudely assigned to a person to designate a devalued social status.2 Ervin Goffman was one of the earliest researchers to study the social process of stigmatizing in Stigma: Notes on the Management of Spoiled Identity, and, in some ways, he was a proto-disability studies scholar. Goffman’s work spoke to the experience of navigating a world that saw people with disabilities as less than. According to Rosemarie

Garland-Thompson, in her biographical essay, “The story of my work: How I became disabled,” the U.S. civil rights movement and the Black Power movement provided a framework for people who were labeled as inferior and wrong—the disabled—to speak back to “this accusation of wrongness.”3 Lennard Davis breaks the disability movement into two waves: in the first wave, in the 1970s and 1980s, people were in solidarity against the oppressive regime of ableism. In the second wave of the 1990s, the solidarity was fractured and the movement was plagued with internal conflict.4 In both waves the goal was to put an end to how medical language characterized disability and replace it

28 with a language that recognized the social process of putting restrictions and limitations on what and how people achomplished things in everyday life.5

The social model of disability was created to address how restrictions put on people with disabilities originate in social attitudes and structures and not with the physical state of a particular embodiment.6 The social model challenges the legitimacy and the tyranny of the medical model of disability, which was used by non-medical professionals and non-disabled people to justify denying privileges, assistance, and voices to people labeled disabled, incompetent, feeble, mad, and the like. Wielding the social model of disability, the disability rights movement and the disability pride movement brought about the passage of the Americans with Disabilities Act in 1990, while also raising the profile of people with disabilities in various aspects of culture and everyday life.

Disability studies also took root in academia during this period. In 1982, the

Disability and Chronic Disease Newsletter was founded and eventually became

Disability Studies Quarterly, a major source of interdisciplinary research on the topic of disability.7 In 1986, the Society for Disability Studies (SDS) was created, and this was a significant resource for creating community and legitimacy as an area of study. The social science core of disability studies scholarship was soon joined by humanities-based scholars who joined SDS and contributed to understanding disability as historians and cultural critics.8 The humanities scholars brought a focus on narrative, aesthetics, and representation to the discussion of the social construction of disability. Prior to the 1990s, educators relied the medical model, but after several conferences that focused on the

29 intersection of education and disability, researchers and educators began to work on addressing the ways that education can approach disability in new ways, and this ongoing effort is called Disability Studies in Education.9 Currently, there are numerous opportunities in various sectors of society for disability studies scholars and activists to continue to transform the way disability is represented, treated, and constructed.

Disability and Identity

Identity is a complex and contentious issue in disability studies. While the disability pride movement, and its various offshoots, encourage people to claim their disability and to find community in being a person with a disability, there are many writers who have developed different positions on the issue. Rosemarie Garland-

Thompson, an Emory professor who was born with a limb difference, embraced disability as an identity because feminism taught her to be critical of messages that she was less than or inferior.10 In other words, feminism introduced her to positive identity politics and demonstrated how embracing a marginalized identity could serve academic and activist objectives. Similarly, Nick Walker, a leading voice in the neurodiversity movement, embraces autism as an identity category, contending that as a minority group,

“people with disabilities” does not compute. He points out in the case of race and sexuality we say, “she’s black” or “she’s a lesbian.”11 Yet, as he further explains:

If we use phrases like “person with Autism,” or “she has Autism,” or “families

affected by Autism,” we’re using the language of the pathology paradigm—

language that implicitly accepts and reinforces the assumption that Autism is

intrinsically a problem, a Something-Wrong-With-You.12

30 Nick Walker enthusiastically embraces his autism and wants to be called autistic. To him, people-first language legitimizes the devaluation of difference when disability activists and people with disabilities should be encouraged to value their embodiment and difference. Meanwhile, Lennard Davis argues that if disability is socially constructed and therefore is an unstable category, then instead of reifying the social construction of disability, scholars should try to move beyond identity politics and amplify the instability of the category.13

Furthermore, people with disabilities that entail living with physical pain chafe at the suggestion that they should embrace their disability as an identity. This would be tantamount to embracing the bodily pain. Narcolepsy is at the intersection of conditions that impose unenviable experiences that are not easily embraced and the neurodiversity conditions that challenge conceptions of normal brains. On good days, I embrace narcolepsy as a neurodiversity condition and then there are rare days when I chafe. The nature of narcolepsy requires a stance towards disability that is flexible and can appreciate the diverse stances people with narcolepsy may take towards issues of disability and identity. I use both person first language (e.g. person with narcolepsy) and identity language (e.g. narcoleptic) in recognition of the multiple stances people with narcolepsy may take towards the topic of language.

Rather than focusing on identity, many people who research disabilities are more interested in researching and theorizing about the choice to “pass” as able-bodied or to identify as disabled through disclosure, requesting accommodations, or everyday practices.14 While this project began as an inquiry into the ways people with narcolepsy

31 navigate these types of issues, it became clear at an early stage that, as Walker suggests, it is essential to recognize language that implies that something is wrong with human variation.15 To access the lived realities of people with narcolepsy, I had to critique and abandon ideas that would lead to replicating the voice of medical discourses on narcolepsy.

The Hope of Seeing Disability

For a few months now, I have received Google alerts for references to “invisible disability” and “hidden disability.” It did not take long before I saw a pattern; one type of story gets told time and again on the internet and in the news: the story of people with hidden disabilities being harassed for using handicap parking16 and the trouble they have with accessing other public areas that are designated for people with disabilities.17 These stories of harassment challenge and critique self-appointed vigilantes18 and neighborhood organizations19 who thought that law enforcement officials were not doing their job and therefore started to publicly police these spaces by confronting people who seemed to be using such areas illegally. Unfortunately, these spaces are designated with the iconic blue and white handicap parking sign—a sign that too often is interpreted as indicating that the space is for people with wheelchairs—which only obfuscates the meaning of the space and the meaning of disability. People who recently underwent surgery, are experiencing mobility impairments, have brain damage,20 live with neurological disabilities, or deal with a number of other conditions are told by the poor design of this sign and by the fanatical policing of these spaces that a concealed disability is not as legitimate as a visible disability.

32 There have been a number of responses to these handicap parking feuds, which include: one person created a handicap sign for invisible disabilities;21 news outlets circulated stories about these confrontations to national audiences;22 public officials increased fines for people who park in handicap spots;23 a company launched an app to help volunteers police handicap spots;24 one person produced a blog that, until 2012, was singularly devoted to shaming people who illegally used handicap parking spots;25 and, of course, others told insightful accounts of how they eventually learned the inherent fallacy in this form of disability-policing.26 In a CNN blog post, journalist and disability activist, David Perry, discussed a very public example of learning about the limits of visibility in which the rapper Kanye West refused to start his concert until everyone in the audience stood up. Upon seeing someone still sitting, he stalled, complained and eventually sent security out to see if the fans that were saying he was in a wheelchair were right. Once he learned that the sitting audience member was in a wheelchair, he started the concert.

Perry’s point of telling the story is to call attention to how problematic requests to prove disability continue to be viewed as legitimate questions in everyday life.27

Presumptions researchers have about what they should have access to and what they can see can be similarly problematic. In approaching a condition like narcolepsy, I sought to interrogate assumptions about the relationship between visibility, knowledge and disability. After outlining the role of visibility in discussions of disability in everyday life

I will then start to build a framework that focuses on context to access meanings of disability.

33 The Problem with “Seeing” Disability

In Western traditions, the history of human physiology is a history of how healers have seen the body.28 The multiple editions of the physiology book now known as Gray’s

Anatomy exemplifies how mechanisms for seeing the body reflect shifting conceptions about the body, health, and life.29 Going back further, a litany of now defunct concepts such as craniology, bodily humors, and vapors from digestion each made appearances in the drawings used to train healers.30 Like the Orientalism that Edward Said traces, all facets of the body have histories, ontologies, images and vocabularies that give them presence.31 Just as the act of representing another’s culture implicates self-congratulation, hostility and aggression, there are significant effects of representing bodies and pathologies. Investigations into unseen disabilities, like the investigations of unseen far- off cultures, both tax distinctions between pure knowledge and political knowledge without intimating that all forms of knowledge exist within systems of power.

Knowledge contains ideologies and is never neutral. By exploring the relationship between visual culture and disabilities, I argue that the intellectual interest in the visibility of a condition may at times work to obscure the lived reality of having a disability.

Western traditions of art and communication are steeped in a culture of representationalism where bodies represent and are represented in ways that reflect deep moral beliefs about society.32 Such practices predated the rise of empiricism but have flourished ever since empiricist modes of research came into vogue. For people who live with what I call hidden disabilities, the implications for being seen are tremendous.33

Seeing a body occurs within overlapping systems of power.

34 The act of passing as an able-bodied person may grant benefits and privileges that also may be revoked when their relationship to disability requires accommodation or explanation. While the act of disclosing a hidden condition may encourage social support and intimacy, disclosing can also invite assessment and scrutiny that carry potentially dire consequences.34 Moreover, to receive benefits such as assistance in education, employment accommodations, access to health services, and to qualify for supplemental income, a person’s disability must be laid bare and made available to scrutiny and assessment. Thus, there are apparent benefits and material consequences to being seen and to not being seen that go far beyond interpersonal information management and privacy.35 Yet, the concept of seeing simplifies the vulnerable act of disclosing and flattens the way consequences, language, assumptions, ignorance, material needs, and other aspects of life are a part of what can and cannot be “seen.”

The process of verifying an impairment or an illness—making it seen—may not end messages and behaviors that undermine or contest disability. As my chapter’s introduction suggests, experts and lay people alike still may read bodies that appear able- bodied with an expectation that this outward appearance corresponds to concepts of wellness and fitness.36 Researchers interested in contributing to knowledge production processes about disabilities should recognize how assumptions about representation distort the process of seeing at multiple levels of inquiry.

The expectation that all disabilities be translated into objective knowledge is not a neutral appeal—a body’s ability to produce knowledge via measurements, tests, exercises, and observation occur in socio-historical cultural landscapes.37 In other words,

35 must researcher seek out bodies that have been medically diagnosed and therefore seen under the right conditions by the right people to reflect the right medical constructs?

Alternatively, resisting acquiescence to social, personal, and political forces that obfuscate and distort bodies into silence also has troublesome implications. That is, to render a person in a way that lifts them into an abstracted argument about the way bodies are reflections of discourse enacts a different type of misrepresentation. Even so, I would like to argue that this is a false dilemma. Knowledge production about disabilities does not need to choose between the language of biomedical sciences and the language of the humanities or social sciences. Many researchers seek to develop descriptions of disability in situ—amidst the experiences of everyday life. Such work labors to see disabilities on their own terms—to see the interactions between bodies and their physical and social environment requires grappling with the dilemmas of such an attempt.

Like making a diagnosis, “seeing” is often characterized as an impartial and innocent act; on the contrary, what is seen is partial and the act of seeing is tainted by the material context and epistemic context where it occurs. To see a body is to see an empty canvas that has been filled stroke by stroke with a history of meanings with the brush of perceptual processes. There is nothing simple about seeing. To see something—an atom, a body part, a smile, a wrinkle—denotes a specific way of processing perception that occurs within a singularity. However, simplistic understandings of sight and knowledge guide how society and many researchers distinguish and define disability—slicing the category with this flimsy concept of visibility into physical and invisible.

36 Defining Disability and Hidden Disability

To engage in this type of critical research project, I must be willing to scrutinize the language used to define my subject of investigation. Like the language of visibility, the act of definition can either enhance or flatten understandings of a lived reality. When hidden disabilities are defined by a list of pathologies, it ties the experience of having a hidden disability to the medical model of disability in ways that reveal unchallenged assumptions. An uncritical reliance on medical definitions to validate and to name impairments naturalizes pathologies. Wendell claims that the social and cognitive authority of medical descriptions of the body validates and invalidates how society supports or fails to support how we experience our bodies and selves.38 The consequence of investing so much into medical authority, according to Wendell, is that it legitimates the treatment of people differently based on perceptions of social and cognitive authority—compounding the vulnerability of people who poor, disabled, female, non- white individuals.39

Overreliance on pathological categories also contributes to discursively delegitimizing people who have idiopathic conditions that lie beyond the grasp of medical knowledge, and it ignores those who live with yet to be diagnosed conditions.

The presumed universality of medical language to discuss bodies in society casts those who have limited treatment options as aberrations in a system where names and practices are presumed to be parallel—for example, a cancer diagnosis is presumed to accompany medical treatment. Such medicalization of hidden disability research can be read as an

37 implicit endorsement of medical regimes disregarding the nuances involved in healing and treatment.

Pathologies are abstractions that come into being through a long process that is influenced by political forces, economic forces, and are always limited by the technology of the day. People who assign pathologies are ascribing an abstract construct to bodies; pathologies map onto bodies, lives, and contexts in ways that may have unforeseen consequences. Symptoms, on the other hand, are observations, behaviors, and signs that do some of the abstract work of naming illness. The subjective meaning of symptoms will vary based on a myriad of facets in everyday life. For example, persons with narcolepsy who are prone to sleep only while sitting could have resigned to working while standing and therefore are not as disabled as those who have the same type of sleep latency but work in sedentary positions. This focus on context also cues a pivot towards performance to describe how individuals navigate a world that has trouble seeing who they really are.

Parking lot vigilantes that have difficulty seeing people who can walk as legitimately disabled are no different from any other person who may have difficulty believing someone has a hidden disability. In both situations, an incompatibility occurs between the nature of the object under question and the language used to assess it.

Problems with seeking to see disability inevitably arise because disability is not a visual entity. The two-dimensional language of optics will only ever be able to capture a tiny sliver of the multi-dimensional reality of disability. Nevertheless, as Dwight

Conquergood puts it, “dominant epistemologies that link knowing with seeing are not

38 attuned to meanings that are masked, camouflaged, indirect, embedded, or hidden in context.”40 A visual culture calls for a visual language even at the expense of understanding and depth. The incompatibility between the two-dimensional language of seeing and the complex reality of disability occurs at various levels of communicative interaction. While the issue of visibility is salient to the topic of hidden disabilities, it is crucial to also move beyond two-dimensional concerns to develop a way of communicating about the complexity inherent in living with a condition like narcolepsy.

As a researcher who identifies as having a neurological disability, it was imperative for me to grapple with the implications of researching my own condition. A specific diagnostic category is neither a neutral designator nor an apolitical object of investigation. By choosing to delineate an area of investigation along diagnostic lines, as a researcher, there was also a concomitant choice to critically engage the institutions, the languages, and the procedures that have brought diagnostic criteria into existence, along with the discrete and diffused benefits of their deployment. Lastly, advocates for neurodiversity argue that individuals should have access to language that describes their constellation of mental processes without subjecting oneself to a pathology that often involves material and social consequences.41 If hidden disabilities are not sufficiently described by a list of pathologies—i.e. autism, Parkinson’s disease, post traumatic brain injury, bi-polar disorder—then what is a hidden disability?

To approach hidden disability in a way that encourages language about the specific context, I have defined disability in similar terms to the World Health

Organization (WHO). WHO defines disability as “the interaction between individuals

39 with a health condition (e.g. cerebral palsy, Down syndrome, and depression) and personal and environmental factors (e.g. negative attitudes, inaccessible transportation and public buildings, and limited social supports).”42 Note that the key word here is interaction. This way of defining disability minimizes tendencies to judge ability and disability in a more cursory manner. In the definition of disability put forth by WHO, environmental factors refer to things that can either be a facilitator or a barrier.

Environmental factors include: products and technology; the natural and built environment; support and relationships; attitudes; services, systems and policies. These contextual factors interact with a person with a health condition in a way that creates a disability or enables the individual. Personal factors reference things like motivation and self-esteem that influence how much a person participates in society,43 while also including factors such as, “gender, race, education, occupation, and hard-to-quantify human factors such as past personal experiences, individual temperament, and other intrinsic characteristics such as state of mind.”44 This definition, and the International

Classification of Functioning and Disability it draws on, turns disability into a continuum and abandons the tendency to regard it as a category. By looking at how narcolepsy interacts with contextual factors of a specific place, I can approach narcolepsy as a disability without imposing that label onto participants. This definition of disability also encourages an investigation of the role of place in the everyday life of people with narcolepsy.

Like the WHO definition of disability, hidden disabilities are about an interaction between bodies and place. By not defining hidden disabilities by the existence of a

40 diagnostic category, we can focus on the interaction of disability—bodies in social contexts and physical spaces. It is this willingness to define interaction as a site of interaction that allows researchers to approach these interactions as a source of heuristic insight. It also allows researchers an ability to work in a way that is attuned to, “meanings that are masked, camouflaged, indirect, embedded, or hidden in context.”45 For the motivating issues behind an in situ approach to hidden disabilities are the many intricacies of how knowledge processes create places where some disabilities are self- evident while others are not.

To create a space for representations of hidden disabilities that disrupts unexamined assumptions about knowledge and visibility, I will define hidden disability using a specific disability context. A hidden disability is an impairment that occurs in specific contexts and spaces that impinge on an individual’s ability to fulfill social roles and responsibilities. Take for example, narcolepsy is a neurological condition and it affects nearly all aspects of the patient’s life. Accordingly, the pathology of attention deficit hyperactivity disorder (ADHD) and narcolepsy may seem quite different at face- value, but in a specific context the disability may be identical, if only for a moment. This is because excessive daytime sleepiness may affect a person’s ability to focus. Therefore, a student with narcolepsy and a student with ADHD might both be at a disadvantage if they are in the back of the classroom, or near windows and doors that offer an endless parade of potential distractions. These two very different pathologies can yield similar experiences of disability.46 As a result, teachers, pedagogies, texts, activities, spaces, and interactions that expect these students to have an implicit capacity for attention and focus

41 may similarly disable both students. In other words, context may be more significant than nuances of pathology.

A Note on the Language of Invisibility

Before proceeding further, I would like to note that the operable word here is

“hidden” and not “invisible.” While many researchers, activists and practitioners tend to use these words interchangeably with little sustained attention to the rhetorical significance of the category, it is imperative to differentiate the two words and justify why hidden is more appropriate for this research project. Alternatively, invisible is also used to describe the taboo surrounding disability as opposed to the nature of the disability itself. In other words, invisible may refer to, “the absence of disability from the conversations and activities that establish the way a society functions, encompassing social relationships, intellectual and artistic work, and politics.”47 Clearly, situating an absence within an argument that typically requires proofs, descriptions, and evidence is a problematic use of logic. While the essence of such language is laudable, it would be unwise to rely upon the logical fallacy of invisibility. Putting this issue aside, I would like to offer an alternative understanding of invisible and hidden that is attentive to their different effects and etymologies.

The Oxford English Dictionary notes that the first recorded use of the word invysible referred to God.48 Here invisible means, “that by its nature is not an object of sight.”49 As an adjective, invisible references people and objects that are not objects of sight. Hidden, is also an adjective, but rather than seeking to describe inherent traits, it gestures towards context, as in, “concealed, secret, occult, etc.”50 —that which is kept

42 from knowledge and observation.51 The word hidden is derived from the Greek verb

κεύθειν “to hide,” meaning “to hide, cover up, conceal.”52 The etymology of hidden is a genealogy of attempts to protect property, body parts, and family members, as well as emotions.53 Exercising control over knowledge is the main means for protecting such possessions. These objects, body parts, family members, and emotions exist in a context where seeing them is an effect; it is the knowledge that seeing produces. Thus, hidden does not reference inherent traits, rather it recognizes knowledge’s potential effect within systems of control, surveillance, and power.

Hidden disabilities can be hidden at multiple levels of interaction. Interpersonal communication and/or nonverbal communication can hide a disability; but more importantly, systems of organization and modes of interrogation may directly or indirectly hide persons and their differences. To call a condition or disability hidden is to situate it within a context that conceals a phenomenon. And it is this attention to context that unites all lived experiences for they all retain a potential for concealment. In other words, hidden disability, as a category, includes more apparent—physical—disabilities because in the right context they too may be concealed. Again, this attention to etymology is rooted in an appreciation for how meanings are fixed to an archeology of utterances and an acute appreciation for how names have discernible effects.

In contexts that rely solely or primarily on vision as a mode of communication, such as comics and movies, invisible appropriately denotes a trait that lies beyond the field of sight. Outside of such two-dimensional representations of life, the term invisible threatens to transform the complexities of embodied perceptions, multimodal

43 interactions, and fluid identities into flat caricatures. Furthermore, the term invisible implies that seeing is neutral and simple; however, as I have argued here, bodies are most appropriately described in accordance with the contrary assumption that seeing is always and at once a part of a larger system of complex intersecting patterns.

Labeling a phenomenon/body/illness as seen or un-seeable is no simple proposal.

Rather, such designations reflect the position of the speaker and the systems of knowledge such labels maintain. Anatomists saw veins and arteries for hundreds of years, but since conceptions about how the body functioned did not understand their role and function, this part of anatomy—the circulatory system—was hidden until prerequisite gestalts rendered visible the functions and effects of veins and the heart. In other words, they could not be seen until they were discovered.54 Histories of the body, mental illness, disease, mathematics, physics and science provide numerous examples of how discoveries require a particular gestalt—a comprehensive change in perception—because the ability to see one fact may be obstructed by abstract concepts that guide how we make sense of sensory stimuli.55 Seeing the circulatory system required a set of assumptions, and these assumptions necessitated a renunciation of previous incommensurate concepts.

Hidden disabilities exist in contexts that hide lived impairment through a series of interpretive frameworks that inform and thereby restrict perception.

Contexts that hide how bodies differ may entail a set of tendencies, social positions, systems of thought, and pragmatic constraints. Taken together, these overlapping contexts may collude in obfuscating significant dimensions of human experience. Contexts that hide difference and deny the possibility of difference create the

44 ontological experience of being hidden. As a person with narcolepsy, I exist within these interlaced contexts and therefore have access to interpretive frameworks that inform how

I write about and see other people with narcolepsy. In my work, I seek to orchestrate a presentation of narcolepsy that situates it within everyday attunements and among the accumulated sensitivities that a life of performing a hidden disability makes possible.

Accordingly, I write about such matters while also attending to the shifts between showing, knowing, and learning that are incumbent to this medium of exposition.

Social and Cultural Research on Sleep

Norms about sleep make up the discursive context that shapes how narcolepsy is perceived or hidden. What sleep means, how it should happen, when it occurs, where it should happen, and other aspects of sleep are aspects of everyday life that many people take for granted. Like eating, sexual behaviors, and clothes, sleep varies widely from culture to culture and may vary within a culture based on social identity, age, and other factors. For example, sleeping in public spaces might be taboo and uncomfortable places to sleep in Western cultures where sleeping in private rooms and personal beds is associated with feeling protected while sleeping. However, in other countries, like in

India, communal sleeping is quite normal because sleeping near trusted others provides a sense of protection and belonging.56 According to Brigitte Steger and Lodewijk Brunt, in their introduction to, Night-Time and Sleep in Asian and the West, there are three types of sleep cultures that societies may adopt to organize sleep. The monophasic sleep culture is where people have adopted the ideal of an eight-hour nocturnal sleep phase.57 In the

United States and in Northern Europe monophasic sleep is commonly regarded as a

45 physiological need, and daytime sleep is discouraged and avoided.58 Other socieities may reflect the siesta culture of sleeping or the polyphasic sleeping culture where daytime sleep is more prevelant.59 To understand the experience of having narcolepsy, it is crucial to also investigate sleep as a social and cultural practice that exists within a sociohistorical context. This section will argue that when, how, where, and why sleep occurs is prescribed through social and cultural norms. It is this interaction between bodies and environmental factors that make narcolepsy disabling.

According to William Dement, the father of sleep medicine and author of The

Promise of Sleep, people cannot know that they are sleeping while they are asleep.60 The experience of non-dreaming sleep, by definition, is not possible. That is because, Dement defines sleep as a state that is characterized by two traits; sleep is “a perceptual wall between the conscious mind and the outside world” and it is “immediately reversible.”61

From the perspective of a person with narcolepsy, his description of sleep is elegant in that it makes it easy to see how pieces of this perceptual wall may intrude during the day in various forms. However, according to Dement, most people understand sleep as a shutting down, a switching off, a cessation of all activity, or a turn towards oblivion.62

Nevertheless, as I described in Chapter 1, during sleep the opposite is occurring—sleep is a place where a lot happens. During sleep, brain activity peaks, reaching levels that exceed what occurs during waking hours; hormones are released that repair and rebuild the body; muscles are paralyzed; and dreaming creates an alternative consciousness.63

Sleep is also an vital time for the immune system and the digestive system.64 Unable to

46 know sleep based on first-hand experience, people must rely on input from others to understand what sleep means and how it should unfold.

In his history of night in preindustrial England, A. Roger Ekirch uncovered what life was like before the proliferation of artificial lighting. His book, At Day’s Close, details how people embraced a distinct way of being at night with patterns and practices that were different from the visible world.65 Preindustrial readers of literary journals and newspapers enjoyed topics about sleeps mysteries including accounts of narcolepsy and sleepwalking.66 People were very concerned about the quality of their sleep and went to enormous ends to create a safe and tranquil place for families to sleep.67 Beds were often the most expensive piece of furniture a family owned and in a modest household it represented over one-third of domestic assets.68 A preference for the practice of sleeping in individual beds emerged by the eighteenth century out of contempt for poorer families who shared beds.69

One of the most significant discoveries Ekirch’s research revealed about preindustrial night was that sleep was not consolidated. Ekirch’s research discovered numerous references to “first sleep” and concluded that, “Until the early modern era,

Western Europeans most evenings experienced two major intervals of sleep bridged by up to an hour of more of quiet wakefulness.”70 Starting in the late seventeenth century, when increases in indoor and outdoor lighting made tremendous gains, sleep started to become seamless, or consolidated.71 Ekirch ends his journey through night’s past by reflecting on how, in the U.S. one third of adults get six or fewer hours of sleep a night because sleep is distained as a waste of time.72

47 Wolf-Meyer’s work picks up where Ekirch’s history of night concludes because his ethnographic research on sleep medicine not only explains why Americans desire consolidated sleep patterns, but it also offers an analysis that critiques the way norms around sleep marginalize people whose body rhythms and sleep patterns fall outside of their culture’s norms. Sleep is a type of spatiotemporal social formation because it regulates and coordinates individuals and society.73 Normative spatiotemporal regimes occur at the level of individuals, organizations, populations, or across a society.74 For many people with sleep disorders, medication is a way of controlling an individual’s body in relationship to the spatiotemporal expectations of everyday life.75

Dement’s conception of consolidated sleep became a clinical model to determine which sleepers were aberrant and who were normal sleepers.76 The idea of 8 hours of consolidated sleep is a normative spatiotemporal regime that people measure themselves against at the behest of institutionalized use of time in the form of a standard workday, school day, and needs of the family.77 The concept of the consolidated sleep model of sleep was exported from the sleep labs to society aided by tendencies to interpret sleep based on cultural values and personal norms.78 Since the industrial revolution, U.S. institutions organized individuals’ days and weeks in a way that has no basis in nature.79

Rather, the inability to operate within the social arrangement of the workday, the school day, recreation, or family life is problematic because it is a departure from hegemonic patterns.

48 Research on and in Contexts that Hide

The Americans with Disabilities Act has made significant advances since it passed in 1990, however, it has failed to integrate people with an array of impairments into economic and social life. This failure invites new and innovative projects that examine the barriers that keep people with disabilities unemployed and underemployed.

80 My investigations of living with narcolepsy unite the humanities’ contributions to disability studies with the knowledge production mechanisms of qualitative research to examine hidden disability as a enactment that is enmeshed within numerous dilemmas of representation. Moreover, hidden disabilities, like any other type of disability, are an instance of what Rosemarie Garland-Thomson calls misfitting.81 Misfits are bodies that must operate within environments that were built to fit a different type of body.

Misfitting occurs, “when world fails flesh in the environment one encounters.”82 Facets of these environments include social, physical, geographical and temporal placements.

Misfits develop and deploy a range of strategies and capacities for coping with the misfit, and these responses to misfitting become the area of focus and not the intricacies of the embodiment or condition.83

I would like to extend Garland-Thomson’s conception of misfitting to explicitly include the whole body—its brain, cognitive functions, emotions, and memories—that can either fit or misfit. Hidden disabilities—neurological conditions, psychological conditions, sensory conditions, immunological conditions, and others—are too often left out of discussions of how built environments may enable some bodies while disabling others.84 The concept of misfits is useful for hidden disability studies because it shirks off

49 the less than useful attention to social/environmental deficits as well as the equally unproductive attention to impairments and deficits.

In Situ Research on Hidden Disabilities

There are exemplars of research whose approach to embodiment reflects an in situ description of how bodies misbehave, misfit, disrupt and become disabled in relation to a specific arrangement of social and physical constraints. Such work fills the gap in research on the relationship between disabilities, spaces, and places, while also offering representations of hidden disabilities that disrupt and challenge unexamined assumptions separating hidden disabilities from other disabilities.

Here I would like to highlight two multimedia and performance based projects that capture the in situ spirit of life with a hidden disability. Jenny Nelson’s Parkinson’s disease narrative project (PD Narrative Project) sought to solicit accounts of life with

Parkinson’s disease in a media context that showed the interviewee’s ability to engage in everyday life.85 As a person with Parkinson’s disease, Jenny and her graduate student assistant wanted to give people with Parkinson’s disease a voice while not subscribing to the aesthetics of health documentaries where people sat and talked to a camera. It was appropriate for people with this movement disorder to be captured doing the things they cared deeply about—where they were most themselves. For example, the first video of the project captured someone wrestling with the compulsion to gamble, which developed as a side effect of the medicine he takes for PD, while another person is filmed jogging through the woods. For both videos, the visual story being told is just as salient as the

50 verbal story. The PD project has been presented at dozens of universities and conferences and can be accessed on YouTube or on their blog.86

As I explained earlier, structures hide bodies and disabilities, and there is another example of how researchers have accessed these knowledge structures as a facet of interactions that disable. The innovative ethnographic book, The Spirit Catches You and

You Fall Down, reveals how the family of one young Hmong boy sees his symptoms through cultural concepts and historical traditions that the medical practitioners misunderstand and cannot access, leading to a number of incongruences between treatment and adherence.87 The family and the doctors saw the boy’s body in dramatically different terms, and this misfit of ideas more than his pathology created an environment where the boy’s condition worsened.

An in situ approach to research on the lived experience of having a hidden disability opens a plethora of possibilities for researchers interested in developing qualitative and quantitative descriptions that make meaningful contributions to a range of areas of inquiry. The issue of how hidden disabilities are communicated can be addressed when researchers approach the relationships among language, knowledge, and representation with a nuanced appreciation for the way context is involved in how ability and disability operate. Furthermore, in situ research enables communication about hidden disabilities that has implications beyond academic papers and books. Being able to speak about hidden disabilities in a way that refuses to be entangled in the dilemmas of not

“seeing” a condition provides a model for people who, as discussed earlier, expect disabilities to be visible and therefore penalize people who have hidden disabilities.

51 While there are several urgent issues around how disabilities are represented and seen, disability is not defined by its optics and visibility. Disability is about the implications that emerge from the way bodies differ. Therefore, communication research on hidden disabilities should continually strive to move beyond the issue of seeing or not seeing— and the superficial information that vision presents—to contend with the discursive ways impairment, capability, pain, and difference are communicated and/or silenced in interpersonal, group, organizational, and mediated contexts.

Performance and Performative Writing about Hidden Disability

Performance studies offers a way to speak about hidden disabilities that takes visibility seriously while also moving beyond concern with optics. Performance offers a framework for understanding disability in a way that is attentive to ways context shapes how disability is experienced. This section will provide an overview of theoretical insights that performance studies is able to offer to the project. Performance studies offers a pathway into the absences that characterize narcolepsy in a way that recognizes the ongoing absence/presence it has in the lives of those who live with it.

Modernism silences people with narcolepsy through conventional understandings of ideas like awareness, action, consciousness and sleep. Narcolepsy challenges conventional understandings of these concepts, and when presented with such a challenge, many people choose to cling to modernist concepts that delegitimize the narcoleptic. To illustrate the way a story about a condition can challenge conventional understandings, I will turn to the story of a man who had a condition that resembled the opposite of narcolepsy—he had persistent consciousness even through sleep. Raymond

52 McDaniel, a lecturer at the University of Michigan, wrote about his condition in first person to illustrate this lived condition in a special issue of Anthropology of

Consciousness. In his story, he wrestled with ways to communicate what he was experiencing. He explained:

So here is what it is like:

Waking alertness is singular. I perceive what I perceive, remember what I

remember, know what I know. It’s like you, except with me. Sleeping alertness is

doubled. I know what I know, but I know what he knows too. He doesn’t know

what I know, however. Thank goodness: that’s a hall of mirrors from which

neither he nor I would never emerge. . . . Now imagine you can never cease

watching television. Imagine that all you can do, in lieu of electing no television

at all, is to change the channel. If that doesn’t resonate, try this: imagine you

cannot blink. Imagine that all you can do, in lieu of darkness, is to shift your

attention.

If each of these metaphors fail—if all suggestive, subjective descriptors fail —

finally I can perform tricks. Set the alarm for any minute an hour, set the alarm for

randomness, and whenever it goes off I can tell you what time it is, to within five

minutes’ accuracy.88

These descriptions fail and the tricks fail because what he is experiencing is foreign by nature of the utter singularity of his experience. McDaniel describes how doctors are not able to say what is happening and can only rule out possibilities. Even the drugs used during a dental extraction failed to eclipse his conscious awareness of what was

53 happening. This is a person who only has his story to communicate about his unique neurological condition, and he wields this tool quite effectively—slaying modernist concepts along the way. His account calls for people to abandon conventional and medical understandings of consciousness, and because his plea takes the form of a story, he succeeds in making readers aware of his unending awareness.

Performance studies provides the theoretical framework for this project because it asks people to put aside familiar preconceptions for the sake of following a story through to its conclusion. Preconceptions about awareness, action, consciousness, and sleep tend to undermine attempts to describe everyday life with narcolepsy. Like Raymond

McDaniel’s utter isolation as the only person who has ever had this condition, people with narcolepsy struggle and fail to communicate about their brains despite the preponderance of people with narcolepsy and the extensive medical literature on narcolepsy. Unlike McDaniel, sleep doctors can, to an extent, explain what happens in the brain of someone with narcolepsy—but their objective language fails miserably in comparison to performative narratives like McDaniel’s.

Modernist concepts have failed many people who are silenced by their marginality. Performance studies has emerged in response to subaltern and marginalized stories that exist despite their impossibility. In his essay, “Performance Studies:

Interventions and Radical Research,” Dwight Conquergood explains, “what gets squeezed out by this epistemic violence is the whole realm of complex, finely nuanced meaning that is embodied, tacit, intoned, gestured, improvised, coexperienced, covert— and all the more deeply meaningful because of its refusal to be spelled out.”89 To capture

54 these descriptions and moments that empiricism and modernity dislocates, performance studies scholars must also be willing to challenge, dismantle, dissect or dismiss the concepts and techniques of conventional inquiry. They can do this by trafficking in different ways of knowing and by dissolving superficial distinctions like the one between theory and practice.90 Richard Schechner describes performance studies in these terms,

“Performance studies is ‘inter’—in between. It is intergenetic, interdisciplinary, intercultural--and therefore inherently unstable. Performance studies resists or rejects definition.”91 It is a pathway into the liminal space that people with narcolepsy inhabit— between aware and unaware, between awake and sleep, between consciousness and unconsciousness, and between action and inaction.

Performance studies scholars seek out the missing pieces of the world by not overlooking the way meaning oozes out of the body, interactions, silence, intentionality and unintentionality.92 Soyini Madison and Judith Hamera explain that in performance studies, “We enter the everyday and the ordinary and interpret its symbolic universe to discover the complexity of its extraordinary meanings and practices.”93 This approach to research is attuned to the way symbolism is multimodal and fluid. According to Victor

Turner, social performances occur in ordinary day-by-day interactions as individuals move throughout life; people are not aware that their enactments are culturally scripted.94

This explicit recognition of unconscious performance allows me to approach the syncope of narcolepsy through a performance framework. Furthermore, Schecher argues that,

“Any event, action, item or behavior may be examined ‘as’ performance.”95 My research

55 stretches this statement to include the inaction and non-event of sleep and sleepiness central to the experience of narcolepsy.

Performance studies is also a way to move beyond the impasse of not being fluent in neurology, cognitive science, pharmacology, and medical jargon that usually discuss narcolepsy solely in physiopathology terms. As Conquergood describes it, performance studies recognizes that, “For many people throughout the world, however, particularly subaltern groups, texts are often inaccessible, or threatening, charged with the regulatory powers of the state.”96 Researchers in performance studies are not interested in passive detached investigations that approach participants untouched and unengaged—they value writing in a way that speaks to the people they are researching. In his essay, “Performing as a Moral Act,” Conquergood describes the moral and ethical stance of performance studies and his commitment to strive for dialogic performances, which is, “one path to genuine understanding of others, and out of the morass and ethical minefield of performative plunder, superficial silliness, curiosity-seeking, and nihilism.”97 Further, dialogic performance is more like an intimate conversation with other people and cultures than an extraction or exhibition.98 He ends his essay discussing how it is the responsibility of the ethnographer to create texts that are accessible because the future of the discipline rests on being able to bring others to the conversation.99 By writing performatively, I strive to bring people to the conversation about narcolepsy and neurodiversity because my future also rests on my ability to write and do research in a dialogic stance.

56 The medical realities of narcolepsy and the social construction of disability are at odds in disability studies because individuals are constructed as both object and agent in these competing discourses. Similarly, attitudes about narcolepsy are also diverse. The goal of the dialogic stance is not to get to a neat and yet tenuous state of harmony. Rather, it aspires to bring differences together so that they can have a conversation.100 One of the larger goals for the present study is to develop a greater understanding of distinct ways of being in the world, and for people with narcolepsy these ways of being straddle the medical and social model of disability.

Performance studies’ most radical intervention is its willingness to embrace both rigorous research projects and evocative creative work—“papers and performance” as

Conquergood puts it.101 This hybrid abolishes the hierarchy that organizes types of knowledge production. In its place it adds another imperative, “the romance of performance for the authority of the text.” My stage of performance is two- dimensional—the written text of the dissertation. While in other contexts I am a visual artist, a poet, and a musician, this project is a written performance of the lived experience of narcolepsy.

Performance Studies and Hidden Disability

There is a long and rich history of performing debility on screen and on stage. The intersection of performance studies and disability studies tends to highlight issues of representation, gaze, movement, and monstrosity. When bringing these two perspectives together to look at how bodies may be different in less visible ways, there are number of possible routes researchers have taken to examine hidden disabilities and chronic illness.

57 I have identified three types of approaches to exploring hidden disabilities through performance studies: live performances, textual and rhetorical analysis, and analysis of personal narrative. These are not the only ways hidden disabilities can be examined in performance studies, rather, they reflect how I group the work that I hope to contribute to.

These approaches are often blended together.

Live performances have a live audience or mediated audience and make the hidden disability performative through performances. Julie Cosenza’s performance,

“SLOW” argued that performance is a dyslexic form of learning and knowing while also challenging dichotomous concepts of able-bodied and disabled.102 Brian Lobel’s “BALL” is a one-man performance that spans three different shows, taking the audience from the moment he was diagnosed with testicular cancer to all the places he found himself navigating a medical system that poked, poisoned, and probed him, all while also critiquing and making fun of the cancer martyr genre.103 Arseli Dokumaci’s dissertation, publications, and forthcoming book approach the subject of everyday life with rheumatoid arthritis from a performance approach to emphasize how the experience of pain is not as hidden as many often think.104 A performance scholar, Dokumaci performed her body’s impairment when she adhered to a dance instructor’s movement exercise and noted some of the moments when her body failed to follow.105 Further, to look at everyday life, she used Gibson’s concept of affordances106 to examine how people with rheumatoid arthritis interacted with everyday objects like a chair and a teacup in ways that make the limitations and pain of their body visible.107

58 Another approach to performance studies and hidden disability approaches the body as a text or rhetorical message that can be analyzed to reveal how it accomplishes passing, disclosure, membership or other aspects of everyday life. Lindemann’s study of wheelchair rugby demonstrates how hiding can be a strategy players used to conceal knowledge about their body to help their team and to maintain membership on the team.108 This also is an example of how bodies and specific abilities can be selectively hidden and revealed even if these bodies are using a wheelchair. There are many other studies that examine particular bodies in specific contexts in ways that reveal how systems of knowledge and institutions participate in rendering part of a player’s ability and/or disability as strategically hidden. Margaret Quinlan and Benjamin Bates’s examination of reactions to Heather Mill’s performances on the reality TV show Dancing with the Stars found both empowering and disempowering themes in how her body was read and understood by bloggers and journalists.109

Nicole Defenbaugh’s book blends live performance with analysis of her personal journey with inflammatory bowel disease in her “autoperformance,” structured as a series of narratives about doctor’s visits, surgeries, bathroom visits, and daily reflections on life with the condition.110 Julie Ann Scott’s work with women with physical disabilities who pass as able-bodied examines their personal narratives and reveals how their performances of passing rely on their ability to demonstrate cultural norms of White femininity.111 Autoethnography is also one of the ways that disability and chronic illnesses are performed and therefore contributes to creating rich and evocative stories about a bodies and pathologies.

59 To review, this chapter recounted the history of disability studies and situated my research in the crisis of representation that is central to both disability studies and empirical research. To research narcolepsy as a hidden disability, I defined disability as an interaction and developed a performance oriented theoretical framework to support bringing the stories of narcolepsy to life through performative writing. I now turn to my methods for collecting hidden stories about living with narcolepsy.

Chapter 2 Notes

1 Baglieri et al., “Disability Studies in Education,” 268. 2 Goffman, “Selections from Stigma,” 141. 3 Garland-Thomson, “The Story of My Work,” para. 9. 4 Davis, “The End of Identity Politics and the Beginning of Dismodernism,” 231. 5 Ibid., 232. 6 Shakespeare, “The Social Model of Disability,” 197–99. 7 Baglieri et al., “Disability Studies in Education,” 269. 8 Garland-Thomson, “The Story of My Work,” para. 17. 9 Baglieri et al., “Disability Studies in Education,” 269. 10 Garland-Thomson, “The Story of My Work,” para. 14. 11 Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm,” para. 18. 12 Ibid., para. 19. 13 Davis, “The End of Identity Politics and the Beginning of Dismodernism,” 232–33. 14 See, for example Valeras, “‘We Don’t Have a Box’”; Cox, “Passing as Sane, or How’s It Get People to Sit next to You on the Bus,” 100; Carey, “Sociopolitical Contexts of Passing and Intellectual Disability,” 142; Samuels, “Passing,” 135. 15 Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm,” para. 12. 16 “Here’s How to Spot a Fake Disability”; Blahovec, “Basic Myths about Disability I Can’t Believe We Still Have to Debunk”; Williams and Media, “Disabled Parking Shock.” 17 I have come across similar confrontations around areas designated for people with disabilities that take place in public restrooms and in public transit. For examples see Hallett, “Saving Seats”; Dell’Antonia, “The Other Bathroom Wars.” 18 Huffpost Ltd, Guy Who Parked His Car In Handicapped Parking Space Gets What He Deserved; “VIDEO”; “Video of Confrontation over Toronto Handicapped Parking Spot Goes Viral.”

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19 Murphy, “Volunteers Keep Eye on Disabled Parking Spots.” 20 Flesher, “Parking Lot Vigilantes Abuse Woman with ‘Invisible’ Disability.” 21 Gordon, “Hidden Disability Symbol May Be the Key to Raising Brain Injury Awareness.” 22 Gingold, “People With ‘Invisible Disabilities’ Fight For Understanding.” 23 Sexton, “Fines Increased for Parking in Handicapped Spots”; Canales, “Phoenix Police Target Disabled-Parking Violators.” 24 “Become a Volunteer with Parking Mobility.” 25 “Handicap Parking Violators Pictures and Video.” 26 Perry, “Kanye West and Proving Your Disabilities (Opinion)”; Perry, “Hidden Disabilities; Or, You Have No Idea What You Are Seeing.” 27 Perry, “Kanye West and Proving Your Disabilities (Opinion).” 28 Montgomery, The Scientific Voice, 142–46. Montgomery’s historical account of biomedical discourse notes how military metaphors and terminology for disease and medicine has been replaced with the language of bioinformation continues to reflect military parlance. 29 Standring, “Preface,” ix.; The editor notes how the size of Grey’s Anatomy has increased dramatically and how the area of anatomy has become a bigger field than the original illustrator and author imagined. She also notes how the technologies for seeing and measuring bodies has contributed to this change. 30 Gould, The Mismeasure of Man., 73–112; Porter, Blood and Guts, 28–29. Gould’s chapter on measuring heads is followed by a chapter on measuring bodies. Craniology was guided by poor methods and the biases of comfortable White men of the 1800s. Porter’s history of medicine includes images of the bodily humours and images of the 4 temperaments. Humoral balance, doctors thought, was responsible for wellness and for many ailments. 31 Said, Orientalism, 5. 32 Berger, Ways of Seeing, 139. 33 Newheiser and Barreto, “Hidden Costs of Hiding Stigma,” 58; Yee, “Lived Experiences of Women with Hidden Disabilities,” 97. Newheiser and Barreto discus how although people prefer to hide in doing so they miss meaningful social interactions because choosing not to disclose a potentially stigmatizing condition also decreases general disclosures. Yee’s dissertation includes a discussion of the marginalization of women with hidden disabilities during their diagnostic period. 34 Ameri et al., “The Disability Employment Puzzle: A Field Experiment on Employer Hiring Behavior,” 3–4. This study sent identical resumes with different cover letters to employers. Some cover letters disclosed no disability while one disclosed a spinal cord injury and another Asperger’s syndrome. Employers responded to the disclosed disability submissions 26% fewer than the nondisabled submission. This study suggests that discrimination against people with disabilities has persists despite the ADA and EEOC policies and legal actions. 35 Ibid., 4.

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36 Fitzgerald and Paterson, “The Hidden Disability Dilemma for the Preservation of Self,” 13. In this study of women with TMJ & MS the author found that revealing their condition for both groups meant taking on a socially devalued self-identity. 37 Haraway, “A Cyborg Manifesto,” 290; Silberman, Neurotribes, 273, 463; Chesler, Women and Madness, 30. There are countless examples of ways in which cultural attitudes are involved in diagnostic processes. For one example, see Silberman for a discussion of how underdiagnoses of minorities with autism. Haraway discusses the way women integrated into cyborg circuitry at the level of the clinic-hospital is a site where control of information translates into systems that impoverish vulnerable populations. Chesler discusses the role of feminist psychiatrists in countering creating healing spaces for women who are victims of violence and trauma. 38 Wendell, The Rejected Body, 119. 39 Ibid. 40 Conquergood, “Performance Studies: Interventions and Radical Research,” 146. 41 Baker, The Politics of Neurodiversity, 21–22; Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm,” para. 17. Baker defines neurodiversity in a way that requires the individual to be formally diagnosed for the purposes of making an argument about how policies and political discourse. In defining the subject in this way she notes that a fundamental aspect of the concept of neurodiversity is the right of individuals to choose or not choose to identify as having a neurological difference while simultaneously also not supporting procedures that encourage people to pass or face consequences. In Walker’s essay he argues that embracing the pathology language is tantamount to embracing the oppression that is imposed on people who are regarded as abnormal. He encourages people with neurological conditions to regard themselves as minorities and to reject person first language that suggests that an individual has a condition. 42 World Health Organization and World Bank, World Report on Disability, 4. 43 Ibid., 5. 44 Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 4. 45 Conquergood, “Performance Studies: Interventions and Radical Research,” 146. 46 Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept.,” 591–92; Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 5. 47 Mintz, “Invisibility,” 113. 48 Oxford English Dictionary, “‘invisible, Adj. and N.’.” 49 Ibid. 50 Oxford English Dictionary, “‘hidden, Adj.’.” 51 Oxford English Dictionary, “‘secret, Adj. and N.’.” 52 Oxford English Dictionary, “‘hide, v.1’.” 53 Oxford English Dictionary, “‘hidden, Adj.’.”; Oxford English Dictionary, “‘hide, v.1’.” 54 Kuhn, The Structure of Scientific Revolutions, 85; Porter, Blood and Guts, 61–62. Porter argued that something similar to a visual gestalt occurs for scientists to be able to see something. Prior to a new paradigm information was like marks on a paper indicated a bird but the new paradigm allowed them to see the lines as another animal. In Porter’s 62

chapter on the body, he discusses the discovery of the purpose of the heart and the existence of a circulatory system. Prior to this, the pulse was considered to be a type of shock wave emitted throughout the body. The theory of the circulatory system explained the spread of poisons throughout the body. 55 Kuhn, The Structure of Scientific Revolutions, 85; Brockman, This Idea Must Die, xxi; Harari, Sapiens, 250.; Brockman’s book is an edited collection of essays on ideas that contributors believe are blocking progress. The Preface asserts that new ideas are only possible when we abandon old ideas. Harari, in his chapter on the scientific revolution, claims that scientist’s reliance on observations to discover new truths means that when a new observation challenges old tradition scientists choose the observation. 56 Steger and Brunt, “Introduction: Into the Night and the World of Sleep,” 12. 57 Ibid., 15–16. 58 Ibid., 16. 59 Ibid., 17–19. 60 Dement, The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection between Health, Happiness, and a Good Night’s Sleep, 13. 61 Ibid., 17. 62 Ibid., 15–16. 63 Ibid., 18–23. 64 Wiley and Formby, Lights out, 56,82,108. 65 Ekirch, At Day’s Close, 119. 66 Ibid., 267. 67 Ibid., 268. 68 Ibid., 274–76. 69 Ibid., 280. 70 Ibid., 300. 71 Ibid., 334. 72 Ibid., 338. 73 Wolf-Meyer, The Slumbering Masses, 13. 74 Ibid., 8. 75 Ibid. 76 Ibid., 38. 77 Ibid., 11. 78 Ibid., 76. 79 Ibid., 225. 80 Riviera Drew, “Disability, Poverty and Material Hardship since the Passage of the ADA,” para. 2. Riviera Drew calls for more research on 81 Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept.,” 600. 82 Ibid. 83 Ibid., 603. 84 Silberman, Neurotribes, 430; Baker, The Politics of Neurodiversity, 22. Silberman’s chapter on Autistic space describes how a meeting between Temple Grandin, Oliver

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Sacks and Mr. and Mrs. B. When in Grandin’s home, which was turned into a haven for people like herself, people who are on the autism spectrum are in an environment that was designed for their comfort. Here they do not feel disabled. Baker’s definition of neurodiversity implicates the way environments are built in without consideration of people with hidden disabilities. She defines neurodiversity as: atypical functionalities found in individuals who have identifiable neurological differences and to their interactions with individuals considered neurologically typical in the context of public infrastructures built around the presumption of neurotypicality. 85 PDNarrativeProject and Nelson, EPISODE 01. 86 PDNarrativeProject, The PD Narrative Project’s Animated History. 87 Fadiman, The Spirit Catches You and You Fall down, 29. 88 McDaniel, “Ever Present: Attention and Alertness in the Unawake,” 210. 89 Conquergood, “Performance Studies: Interventions and Radical Research,” 146. 90 Ibid., 145. 91 Schechner, “What Is Performance Studies Anyway?,” 360. 92 Conquergood, “Performance Studies: Interventions and Radical Research,” 146. 93 Madison and Hamera, “Performance Studies at the Intersections,” xii. 94 Turner, From Ritual to Theater: The Human Seriousness of Play, 32–33. 95 Schechner, “What Is Performance Studies Anyway?,” 361. 96 Conquergood, “Performance Studies: Interventions and Radical Research,” 147. 97 Conquergood, “Performing as a Moral Act,” 9. 98 Ibid., 10. 99 Ibid., 11. 100 Ibid., 9. 101 Conquergood, “Performance Studies: Interventions and Radical Research,” 151. 102 Cosenza, “SLOW,” 6. 103 Lobel, “BALL: Introduction.,” 15; Lobel, “BALL & Other Funny Stories About Cancer.” 104 Dokumaci, “Misfires That Matter: Habitus of the Disabled Body,” 92; Dokumaci, “On Falling III,” 107; Dokumaci, “Performance as Evidence in Chronic Disease,” 15. 105 Dokumaci, “Misfires That Matter: Invisible Disabilities and Performances of the Everyday,” 25. 106 Gibson, “The Theory of Affordances,” 129. of Gibson’s ecological psychology theory of affordances refer to the interaction between subjects and objects in a way that breaks the dualism of the system of representation and action. As Gibson describes, “But, actually, an affordance is neither an objective property nor a subjective property; or it is both if you like. An affordance cuts across the dichotomy of subjective-objective and helps us to understand its inadequacy. It is equally a fact of the environment and a fact of behavior. It is both physical and psychical, yet neither. An affordance points both ways, to the environment and to the observer.” The concept of affordances has been used in a wide range of social disciplines, including

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action network theory, ecological psychology, disability studies, social media analysis, study of technology and science, and rehabilitation, to name a few. According to the theory of affordances, each body perceives the environment based on the possible actions a context or object affords a particular body. 107 Dokumaci, “Misfires That Matter: Invisible Disabilities and Performances of the Everyday,” 74; Dokumaci, “On Falling III,” 108. 108 Lindemann, “Masculinity, Disability, and Access-Ability,” 433; Lindemann, “‘I Can’t Be Standing up out There’: Communicative Performances of (Dis)ability in Wheelchair Rugby.,” 98. 109 Quinlan and Bates, “Dances and Discourses of (Dis)Ability: Heather Mills’s Embodiment of Disability on Dancing with the Stars.,” 64. 110 Defenbaugh, Dirty Tale, 106. 111 Scott, “Almost Passing,” 227.

65 Chapter 3: Methods for Engaging Hidden Stories

In one sense, this project began twenty years ago when I was diagnosed with narcolepsy at the age of 16. The letter the sleep specialist wrote to my primary care doctor memorializes this day beginning with these words: “Thank you for asking me to see this interesting 16-year-old black female with daytime somnolence.” The letter, dated

October 15, 1996, goes on to explain that the sleep test and genetic test confirm the diagnosis of narcolepsy before moving on to describe the prescribed treatment that would be adjusted monthly until the appropriate dosage of stimulants was found. During those first months after my diagnosis, I recall going to the encyclopedia we had and looking up narcolepsy and musing at the way the author could be so negative about what life with narcolepsy means while praising the intelligence of people with narcolepsy. Like many newly diagnosed people, I was thirsty for information about the condition and was rarely satisfied with what I found—until I asked my mom buy the book by Marguerite Utley,

Narcolepsy: A Funny Disorder That’s No Laughing Matter.1 This self-published book combined research with narrative to provide people with narcolepsy needed information and companionship. As I flip through the thin paperback now, I see descriptions of symptoms that lack the cultivation and meticoulous citationality that book publishers and editors might have provided, but I also see the highlighted areas that I carried with me during those twenty years—literally, and in the ways it shaped my view of narcolepsy.

Her book changed my life, and I suspect that it positively affected the lives of many others in the pre-smart phone, pre-2.0 internet, and pre-social media world.

66 For a long time, Utley’s book was the only one written by and for people with narcolepsy. However, when Julie Flygare published her memoir, Wide Awake and

Dreaming, in 2013, which quickly became the most popular book on narcolepsy, the world had changed. As I write today, there a number of blogs, video blogs, books, social media pages, and online forums for people with narcolepsy to learn about this strange and debilitating condition. With all of these highly visible narratives of narcolepsy, why do I still feel like only narcoleptics and sleep specialists understand it? Why is narcolepsy so difficult to understand both for a person living with the condition as well as for people who do not live with it? Moreover, are there better ways to communicate about narcolepsy that help others empathize, understand, and assist—is there a way to communicate about this hidden disability that does not hide the struggle? The present project goes beyond the search for voices and information into a quest to better understand how narratives about everyday life with narcolepsy can create an account of narcolepsy that pays attention to contextual factors shaping the meaning of narcolepsy and its symptoms. By blending methods of inquiry and by experimenting with performative writing, I approach both the absences narcolepsy creates and the presence it has in everyday life in a way that respects and legitimizes both dimensions of the condition.

Narratives, Performance and Sensory Ethnography

My work with the Surviving Katrina and Rita in Houston Projects with Carl

Lindahl at the University of Houston introduced me to the world of narrative from the perspective of folklore.2 Folklorists are interested in the stories of ordinary people but not

67 to apply theories and to make models, rather they listen and examine stories because quality stories provide insights into the human dramas that bind all people together.

Lindahl also taught me how to listen to my interviewees, to get lost in their worlds, and to go where they would like to go. He also introduced me to the peer interview model that also operated as a type of intervention in which people who are experiencing a unique hardship are granted the company of a fellow voyager on their own hardship journey.3

There is a clear possibility that one of these people can pull us both under the current.

However, my experience with the process of peer interviewing showed me that instead, we helped each other and affirmed each other’s resilience and sense of belonging.

Health communication and social support research in the area of disabilities and chronic illnesses tends to cluster around the concepts of disclosure, stigma, and label management. Therefore, in preparation for my dissertation research, I did an exploratory project in which I conducted email interviews with 49 people with narcolepsy and asked them questions designed around health communication concepts of stigma, disclosure, and label management. This research revealed that while these are useful concepts, they tended to limit my inquiries to textual and oral representations of health information and did not provide insights into the complexities that characterize efforts to communicate about narcolepsy.

This preliminary project was fruitful in other ways. For example, my initial questions—about what narcolepsy is and how narcolepsy affects interviewees’ lives— were intended to build rapport before asking the more difficult questions about disclosure, stigma, and label management. However, for some people these questions

68 were approached as rare opportunities to textually perform their narcolepsy. In other words, in addition to receiving conventional answers, I also received poetry, reenactments of their day, metaphors, and biographical sketches. My thirteenth interviewee, Mary, provided a memorable answer to the question, “Please tell me a little about what your life is like as a person living with narcolepsy.” Mary gave me the short version first, “Short version: Its painful and you feel guilty for not being able to do everything that everyone else does. Your body hurts and you forget a lot. You can’t trust your body or your mind.” Then she went on for nearly two pages describing a longer answer to the question, beginning with:

Very long description of a day in my life: The alarm goes off at 5:30 am. I wake

up and get ready for work and make my lunch 3-5 times each morning before I

realize I am still in bed.

6:00 am. But I can’t get out of bed yet, I am in too much pain and freezing.

6:05 a.m I am able to sit up and walk to the bathroom, I keep the doors open

because my hands don’t work quite yet.

It’s 6:15 a.m? Did I just fall asleep peeing? I don’t remember falling asleep.

Better hurry, I am going to be late.

6:20 a.m clothes on hair brushed, now where are my keys? Never mind I’ll use

the spare set.

6:22 a.m Wait, what am I wearing? I can’t wear this to work.

6:25 a.m change clothes, I have to go NOW.

6:27 a.m check on the baby…accidently wake up the baby. Oops, sorry honey. 69 6:30 a.m Oh! I need lunch! *open the fridge* There’s my car keys!!

6:32 a.m Start my car, exit the neighborhood…

6:48 a.m How did I get to work? I don’t remember driving.

This excerpt ends with a reference to automatic behavior. Mary’s account provides a vivid struggle with getting up in the morning. Her description of making lunch refers to the way dreams and thinking about the morning tricks people with narcolepsy into mistaking sleep for wakefulness. She goes on to describe the various ways narcolepsy can affect aspects of executive functioning like memory and attention. As a whole, her story highlights how describing symptoms in the context of a multifaceted life during a demanding day shows how the meaning of narcolepsy unfolds in relationship to the intricacies of everyday life. Accurate, objective, and medical descriptions of the symptoms or the physiopathology pale in comparison to this vivid passage. Mary’s description is a small glimpse into how her day begins and provides just enough context for readers to decipher the ways in which narcolepsy is disabling.

Eve was my first interviewee out of the sample of 49; she was a married woman who had narcolepsy with cataplexy. Once I was at my computer when she sent her response so I was able to read her answers immediately and ask follow-up questions. Our email exchange was similar to a conversation because it was occurring in real time and the depth of our exchange reflects this. Even though laughter is a cataplexy trigger for

Eve, she works as a part time professional comedian. Curious about why she would put herself in a situation where cataplexy was likely, I asked, “Can you tell me about your

70 relationship to humor? It seems to be a trigger and a way to make hard discussions fun.

Also, how did you come to embrace humor the way you have?” To which she replied:

Allow for a bit of a free flow here, as it’s a complicated and paradoxical

relationship. My relationship to humor is like an emergency room doctor or [a]

mortician’s relationship to humor. It’s gallows humor. Humor is therapy to help

the soul cope with pain. The clown is the saddest of all behind his makeup, and

Robin Williams killed himself. To laugh can cut my puppet strings and make me

fall, and I am the puppet master causing audiences to laugh. Laughter is the best

medicine, but in my case it can be bad medicine. They laugh with me, they laugh

at me, I control it I provide it. I am a practitioner of that which causes me pain.

This interview showed me how powerful internet interviews can be when you are able to quickly ask follow-up questions like the one I posed. It also hinted at something that I could only decipher later once I had decided to take a performance approach to researching narcolepsy.

By deciding not to share my identity as a person with narcolepsy I hoped to model interpretivist and post positivist research on stigma and label management in health communication research. After analyzing these and other interviews focusing on issue of disclosure, as I had planned, I realized that I also was performing. By hiding my narcolepsy I was performing as an objective non-narcoleptic researcher. This was not the type of researcher I envisaged becoming when I joined the PhD program. Or was it? This project reminded me of the type of research I came to value while in Houston. Instead of collecting data I wanted to collect stories and listen to people the way I had been trained

71 to listen. The objective researcher role was a lot of work because when someone shared a story that I saw myself in, I had to fight my instinct to bond with a fellow person with narcolepsy, and nearly lost. It felt dishonest and wrong to act like I was not an empathetic fellow on the same sleepy voyage. Despite this tension, I learned a lot about others with narcolepsy; moreover, I learned what type of research I did not want to do for my dissertation. For my dissertation I wanted to be able to listen to the ways Eve and Mary performed their lives with narcolepsy, and I wanted to be able to do peer interviews where I could help the people I was speaking with. This way of engaging with interviewees is informed by my work with Lindahl but it is also informed by my commitment to critical and feminist research. Performance studies is a way to bridge the space between the embodied accounts of life with narcolepsy and the goals of conducting research in a way that allows me to be a researcher who is engaged with participants in a meaningful manner during and after the interview.

Performance studies offers theories, methods, objects of investigations, subjectivities, ways of writing and ways of distributing products of research—it is a buffet. It willingly offers itself up and invites researchers to take only the parts of performance studies that will best suit their projects. As a result, for this project, performance studies provides a way of writing about my experiences with narcolepsy through autoethnography, while also providing a way to write about my interviews and observations. Like Christopher Poulos and other autoethnographers, I have chosen to narrate portions of interview transcriptions as conversational dialogue.4 Geertz refers to autoethnography as a blurred genre.5 It seeks to “make a text present” by demanding the

72 participation of the reader, and by refusing closure or categorization.6 I blended this blurred genre with sensory ethnography. I used the details from sensory ethnography notes, artifacts and photos to transform the interview into a story.

Sensory ethnography has two schools of thought: the Harvard Sensory

Ethnography Lab’s approach to using digital and aural technology to explore aesthetics, and the multisensorial and experiential ethnography approach associated with Sara Pink.7

Sensory ethnography, according to Sara Pink, focuses on, “questions of perception, place, knowing, memory and imagination.”8 It also facilitates an attunement with the way environment and knowledge are intertwined through our interactions with and through place and space.

Critical Feminist Research

Communication researchers who rely on a critical paradigm invoke a wide array of intellectual traditions that promote ethically and politically sensitive study of relationships between power and knowledge. According to Lindlof and Taylor, the commitments of critical researchers can include but are not limited to: an understanding of phenomena as mediated by power relations that are socially and historically constricted9, power relationships as developed in discourse, and this creates “subject persons, and related Self, Other, and World as meaningful objects.” They observe that“the facts of research can never be isolated from its values. For critical researchers, research is not—and can never be—’innocent.’”10 Moreover, they recognize that the influence of the political economy is not determinative; identity structures associated with political economy interact with other identities. It is the goal of critical researchers

73 not only to study the ways in which oppression is created, reproduced and transformed, they also are interested in changing the conditions of those they study. 11 Critical researchers should also be willing to consider their complicity in reproducing oppressive conditions, and in doing so strive to adopt dialogic methods that encourage the development of authentic and collaborative relationships between researcher and the researched.12 The feminist disability studies perspective, and the materialism it is grounded in, provided the critical lens I used in conducting my research and in maintaining contact with the research participants and the support group.

Support Group Participation

I joined the Facebook group “Narcolepsy in Columbus” on November 8, 2014. I would visit the page a few times that year, and in 2015 I responded to one post about exercising. At that point in time, I saw that they held meetings, and so I began to plan on using the support group to help recruit people for my dissertation project. In 2016, after my dissertation proposal was approved, I began to become more active in the Facebook posts by posting information I thought was interesting and by beginning to comment on posts. The group meets the second Saturday of each month. In February of 2016 I added the administrator of the group, Jane, as a friend so our accounts were linked. My

Facebook settings are set so few things are viewable by people who are not my friends. In

March I messaged Jane to see if there was a meeting planned for March, since nothing was posted on the group and the second Saturday was a few days away. She replied with,

“yes. yes. thank you for the reminder... i will set it up on the events page. busy busy month over here. hope to see you there!” The morning of Saturday, March 12, 2016, a

74 few people mentioned going to the meeting on the page, so I drove up to Columbus to attend my first Narcolepsy in Columbus meeting. I arrived a little late, having underestimated the time it would take to drive from Athens, OH to the Strongwater restaurant, located in the heart of Columbus, OH.

As I walk in, I quickly spotted the “Narcolepsy Not Alone” sign that signaled the support group meeting and joined them in the room. There I meet Jake, Theresa,

Theresa’s young daughter, and Aurora. They were chatting when I took a seat at the table. After I introduced myself and started to tell them about my interest in doing research, Aurora, a petite black woman who looks to be about my age but is actually two decades older, turns to me and says, “You know, I can hear it now. Some people say that they can hear my narcolepsy, and I never knew what they meant.“ Now, over a year after that first meeting, I can listen to the interviews I conducted over the summer and I can hear it too—the sleepiness just beneath perception, the unorganized sentences, the thoughts that refuse to keep still. But I am getting ahead of myself—this first engagement with fellow narcoleptics pointed towards something only co-presence could point to. In joining this meeting, I started my dissertation fieldwork. Little did I know, I also started a new chapter in my life as a person with narcolepsy.

The support group meetings are more like get-togethers because there is no agenda, no schedule, nothing official or formal. Eating is optional, although I tend to eat as a way of acknowledging the symbiotic relationship between the group and the restaurant—they give us space and time, we give them customers and business. During the first meeting, I learned about Jake’s narcolepsy with cataplexy and Theresa’s

75 narcolepsy, which is thought to have been caused by a traumatic brain injury. Theresa’s daughter ordered the mac and cheese served with manchego cheese, sautéed onion aji amaillo crema, but ordered without the jalapeno and arugula. When it arrived, the elementary school aged girl took one bite and frowned. After plying her a few times to eat, Teresa let her daughter return to the smart phone she brought. I ordered a handmade ginger ale served with a lime, and after asking the server about recommendations. I decided to take my chances with the Jackfruit cake—she said it was her favorite. Jake informed us that he was going to help Jane with the group since she had been going through a hard time. After the meeting, I was both invigorated and soporific. I was excited because the online Facebook group is real and because this was a promising start for the dissertation. I was sleepy because food tends to make me sleepy—especially when mixed with the stress and worry of the day. Once in my car, despite my noted ambivalence, the I unintentionally fell asleep while thinking about whether I should take nap.

On the second Saturday in April, I drove for 90 minutes to Strongwater in the heart of Columbus. Jake created an event for this month’s meeting on Facebook, and I indicated that I would be attending. Jane and Jake posted on the event page in the weeks leading up to the meeting, five people indicated that they were going and four people selected maybe. Nevertheless, I arrived at Strongwater and put up a sign that said

“narcolepsy not alone” in pink highlighter only to sit in that familiar room alone with only the occasional company of the server and the comfort of the handmade ginger ale.

At the time I blamed Jake for posting that he was not going twenty minutes before the

76 start of the meeting. I thought that he was metacommunicating to others not to come.

After getting to know the group more I do not blame him anymore. As discussed in the

Chapter 1, the irony of a support group for people with an extremely debilitating sleep disorder is that they may often lack the energy and ability to attend the meetings.

According to the groups’ Facebook page, Jane created the “Narcolepsy in

Columbus” page in 2013. She continues to be the main person responsible for the existence of the group. However, the group existed long before Jane joined the group and eventually started running it. Prior to Jane joing the group, this support group was a part of a larger group that had members with narcolepsy and sleep apnea. This sleep disorder support group met at a local hospital and had guest speakers and a psychologist, who would help organize events and meetings. Since sleep apnea is much more common than narcolepsy and is very different from narcolepsy, the people with narcolepsy decided to start their own group. Sable and Nancy, two people who I interview in my project, started this other group for people just with narcolepsy. They had a group of people who came and met regularly, but they had difficulty getting new members. This is when Jane came along and started posting meetings on Facebook. In August 2013, Jane posted a potluck as the first event for the group on Facebook; twenty people were invited because only twenty people were in the Facebook group. That year the meetings they held were

“Monday Meetings” and they met at a coffee shop during happy hour. The Facebook presence brought people who were newly diagnosed to the meetings which is something

Sable and Nancy struggled with; the Facebook page also has moved a lot of the communication between people in the group online in the form of posts, comments,

77 messages and surveys—likely weakening the need for face-to-face dialogue. As of May

2017 the group has over 200 members on Facebook and new people ask to join the group monthly.

The story from the beginning of Chapter 1 was the second time I drove to

Columbus to find that no one showed up for the meeting. That day I messaged Jane and told her about no one showing up. Jane apologized for that and explained how people mean well but, “we still have a big interest in the group but unfortunately are just a big group of sleepy people.” This experience was very instructive; my most immediate concern was whether I would able to do my dissertation but I also wanted to find out what was happening. That day I offered to help host meetings if she needed help. Jane added me as an administrator meaning I could create events and add members on the

Facebook page. I later learned that Jane has a major depressive disorder in addition to narcolepsy with cataplexy, and when her grandmother passed away earlier that year, her problems started to compound. Jane also has had transportation issues and is reticent about asking for a ride.

In April 2016, I completed all of the updates and changes requested to the dissertation proposal, and the study was approved by the Institutional Review Board.

Once approved, I created a Facebook post about recruiting people with narcolepsy to interview and posted it to the group (See Figure 1). The post linked to my personal webpage, which had a link to download the letter of invitation that included all the information necessary for informed consent (See Appendix C).

78

Figure 1. Screenshot of my post on Facebook introducing myself and my project to the group. “PWN” is short for people with narcolepsy.

For May’s meeting, I created the event on Facebook and drove for 90 minutes, not knowing if anyone would show up or not. Like the first meeting and like several to come,

I arrived a few minutes late. As I walked in, I was happy to see people sitting in the room where the group usually meets. That day I met Penny, John, Cynthia, Jane, Elaine, and

Cameron. Jane did a great job of making everyone feel welcomed. She gave everyone multiple black elastic wrist bands that say “make art. advocate sleep,” and mini-sketch books she made herself while also sharing books and resources with the group. Later,

Jane introduced me to Nancy and Sable and I met Aurora during the March meeting. At

79 the end of the summer I had only one male participant, so I asked Nancy if she knew of other men who might be willing to meet with me. She emailed me the contact information for several men who were once more active in the group, and I interviewed

Grouse and Levi. I have hosted several of the support group meetings when I was not traveling for conferences or presentations. I arranged to have other members host when I was out of town. I have met other people through the group that are not a part of the dissertation project. I also have collected artifacts from my time with people in the support group and about Strongwater to help create a rich account of the space and my time there.

My involvement with the support group is one of the ways that I seek to give back to the group. But it also is a way to keep in touch with the people I interviewed to see how their lives and conditions continue to change over time. Meanwhile, I am able to share ideas about the patterns I see in the interviews as I learn more about narcolepsy. In

September, I presented during a support group meeting a general sketch of what my research looked like at that point in time. I continued to attend meetings and took a more active role in planning the meetings and although my role in the support group changed the group’s role in the project did not change. In other words, although I became central to the support group it was never central to my project. Over the course of March 2016 to

May 2017 I attended 11 support group meetings—for three of the meetings no others attended. There were many months when it was just me and one other person, and there were many where several people attended. After meetings, I took notes about how the meeting went, who came, and what types of things were discussed. The meetings allowed

80 me to make sure what I was hearing in the interviews and analysis were consistent with how others with narcolepsy were managing their daily lives. The meetings also helped personally as I will discuss later in the chapter.

Embodied and In Situ Interviews

After the May support group meeting, where I met the bulk of my participants, I chatted with Cameron about doing an interview. Cameron is 27 with light straight shoulder length hair and bright blue eyes. We got into my car to go to a Starbucks that was nearby. It turned out that the closest Starbucks was not a full Starbucks but a stand inside of a Kroger. We chatted a lot in route to the location and had good rapport. We returned to Strongwater so she could drive to a shopping center where we would go to the

Barnes & Nobles Starbucks to do the interview in the Lenox town shopping center. The

Barnes & Nobles was selected once we discovered that the Target did not have a

Starbucks at all. As we walked in, I saw that the ambient noise was going to be a problem—the space was completely open with nothing blocking the grind of coffee beans and blenders from bleeding past the book shelves into the ears of readers—or the recording. In the ideal spot near a wall and far away from the counter sat a group of large middle-aged people laughing and talking with almost as much volume as the Starbucks machines. I explained my concern about sound to Cameron but what could I do?

We sat across from each other at a table made for two. We were located at the edge of the tiled section of the Starbucks that is separated from the bookstore’s carpeted floor. Our table was beside a square pole and a black and green gate-like space divider.

All the interviews began with informing participants about the informed consent form

81 and letting them know that they can stop the interview or not answer questions at any time. After that I had them fill out a contact information form that also asked for their preferred mode of communication (e.g. phone, email, text, or mail) and for the pseudonym they would like me to use for the project. Before proceeding, I had participants answer questions about their demographics and diagnosis story (See

Appendix B). Occasionally, I recorded this part of the interview, which allowed me to listen to how I framed the interviews and note that it usually took between 10 and 25 minutes to get to the first interview question. Often aspects of their narcolepsy would not be recorded because they were shared before I began recording and were not made explicit in the interview or paper work. With Elaine, for example, she spoke about her current concerns at length during the pre-interview phase of our time together.

For Cameron’s interview, this is when I started recording on my iPhone. Then I discussed how there are three main questions for the interview: what is your diagnosis story? what areas of your life are most affected by narcolepsy? and what relationships help you manage narcolepsy? I also let her know that while I will take notes, I also will share my experience so we can exchange stories, and at the end of the interview we will try to set up another interview. Occasionally, I will recognize one of the songs that are playing, like a familiar Erykah Badu song. The upbeat songs clashed against Cameron’s story like acid jazz.

The first interviews were designed to facilitate dialogue13, develop conversations14, elicit stories15, and help process my observations.16 Depending on the type of conversation we were having and my attention to the interviewee, I would

82 rephrase the questions or ask questions that were not listed on the probes to get more information or to explore a topic that was broached.

Cameron’s interview lasted 79 minutes. About an hour into the interview,

Cameron’s face suddenly started to look fatigued. Her bright blue eyes and pleasant young face broadcasted her feelings, and I wondered if she knows how transparent her face can be—I wonder how transparent mine can be? Around this time, Cameron asked to go to the bathroom. I paused the recording app and went over my notes and questions while she was away. She finished the interview looking awake and alert and so we planned to meet at her place for the next interview. The second interview was canceled.

It was clear from my first interview that her life is so compressed and unwieldy that perhaps I would not get two interviews out of every person. Also, in future interviews I incorporated breaks or offered them to my participants. During her interview,

I learned why my plan to interview people at their homes may not work. Home is a site of mounting tension and unfinished work for Cameron, and I began to suspect that other interviewees will be reticent about inviting me home for an interview. Cameron and I initially agreed to meet there, but when she canceled the second interview, I was sympathetic—her life was very busy and the time she had for it was choked by sleepiness, tiredness and unfinished tasks. Even so, the next day my interview had none of the issues that arose in Cameron’s interview. Penny was happy to do the interview at her home and was flexible when it came to setting up the second interview. She also was eager to initiate breaks. I also interviewed Jane before driving back to Athens. I began recording on my phone and computer so I would have a back-up and a primary recording.

83 I conducted a total of 20 interviews with 11 individuals between the months of

May 2017 and September 2017 (see Table 1). The interviews ranged from 30 minutes to

131 minutes. The first interviews were conducted in a variety of locations (home of participant, at a public library, at a Starbucks, at a hotel or at the workplace of the participant). For the second interview the range of places is wider (at a church, in a car, at a library, at a workplace, at a skate park, at a dance studio, and at a restaurant). I video recorded most of the second interviews except for Sable’s interview in a car. Four of my participants have narcolepsy with cataplexy the rest have narcolepsy without cataplexy.

Five participants have a graduate degree and four have 4-year college degrees. Eight of my interviewees are female and three are male. The average age of my participants was

49 years old with an average onset age of 33 years old. The average age on onset of symptoms is 12 years old.

While the first interview is a semi-structured interview with dozens of probe questions so I can ask to make sure all relevant areas are covered, the second interview is an unstructured interview designed after the walking interview. The walking interview is a way of collecting stories in the contexts in which they occur.17 They can make it easier for participants to take part in the study and can yield context-rich research interactions, while also allowing for serendipitous encounters between the interviewee and the interviewer.18 Walking interviews allow researchers to collect information relating to participants’ understanding of place.19 Few researchers have examined the relationship between what we say and where we say it, and it is essential that researchers recognize the way place can influence what kind of stories can be told.20 From the perspective of

84 Table 1. Participant’s Demographic Information Participant # of Age Highest Relationship Employment Primary Race Interviews Education Status Status Income Penny* 29 Graduate Married Employed No White 2 (28) John 49 College Married Self Yes Black 2 (43) Employed Aurora* 53 Some Divorced Employed Yes Black 2 (44) College Jane* 47 College Single Social Yes White (25) Security Dis 3 Sable* 56 Some Married Disability Yes White 2 (18) College Retirement Nancy* 77 Graduate Married Retired No White 3 (27) Cynthia 42 College Single Employed Yes Black 2 (28) Cameron 27 Graduate Married Employed No White 1 (23) Elaine 35 College Married Employed No White 1 (35) Grouse 61 Graduate Single Employed Yes White 1 (54) Levi 66 Graduate Married Retired No White 1 (37) Note: This table presents information collected from the demographic form filled out before interviews. “*” indicates participants with narcolepsy with cataplexy. Age refers to participants age at time of interview and the age they were when diagnosed is in parenthesis. “Graduate” means they have a graduate degree, “College” means they finished a 4-year degree and “Some College” means they attended college but did not graduate with a 4-year degree.

rehabilitation and disability studies, the walking interview lends itself to a range of affordances in which the power dynamic between researcher and interviewee can be altered, situational behaviors and thoughts are primed for the interview, increased performativity is facilitated, and the interview is engaged as an embodied process (See

Appendix B).21 While I suggested possible places we could meet for the next interview based on salient aspects of their story, sometimes the interviewee suggested a different place. This practice is something I encourage by framing the second interview in terms of

85 telling the story they would most like to tell about narcolepsy and place. Laura Ellingson claimed that 90% of communication is nonverbal and urges us to remember that our self- presentation is a part of the interview experience.22 I tried to video record the second interviews to aid me in reporting on the interview in a way that captures both spoken and unspoken communication. Videos of the second interview were only seen by me and will not be shared with anyone.

Identifying details (e.g. profession, background, appearance, area of town etc.) were judiciously changed in transcriptions and fieldnotes to protect the confidentiality of participants. The names of nonparticipants—like doctors, spouses, and pets—have also been changed to protect confidentiality. Most of the interviews last 90 minutes, but there are some that are shorter and a few that reach two hours. The second interviews, in general, are more relaxed because after the first one, they know a lot about me and are more open to sharing. After Cameron’s interview, I filled out a participant summary form, which asks me to reflect on the interview considering the research questions that guide the project.23 I took several photographs before and after support group meetings and interviews to be able to recreate the sensory experiences of the interview. Moreover,

I noted the weather, my transportation, sounds, smells, and tactile experiences while with the interviewee.24 My notes took the form of voice memos, handwritten notes, and typed notes.

Autoethnographic Reflections

To track how the interviews were changing my understanding of my own narcolepsy, I also engaged in a lot of writing about my narcolepsy and how I

86 communicated about it and how I did not communicate about it. Since I knew that my struggle with narcolepsy, medications, side effects and communication may become relevant to the dissertation, I also began documenting aspects of my medical treatment. I asked my primary care physician at Ohio University for the Epworth sleepiness scales that I filled out each day I came to see her. I also took photos of some of my visits to the doctor and reviewed my medical records to piece together some of my early engagements with doctors around narcolepsy. I also wrote and recorded head notes about my experiences and reflections on the interviews. In addition, during the months prior to engaging with my participants, I wrote two autoethnographic essays that could be incorporated into the dissertation. One of these was developed into Chapter 4.

As the dissertation will reveal, much more than my understanding of narcolepsy has changed because of my engagement with this work. My narcolepsy symptoms and treatment have changed so dramatically that I am able to hear the sleepiness that my participants like Aroura noted because it is no longer something I am forced to live with on a daily basis. The support group introduces people to Sodium oxybate (Xyrem), which is a drug made exclusively for people with narcolepsy that few doctors know about and prescribe. Sodium oxybate (Xyrem) is taken at night to help people with narcolepsy have consolidated sleep, which makes them less sleepy during the day. The group also has a fond relationship with a doctor in the Columbus area, who I will call Dr. Arora, who came to do a presentation with the group in 2013 called “Living with Narcolepsy:

Managing Symptoms and Much More.” Dr. Arora is open to listening to his patients, especially his patients with narcolepsy. In the Fall of 2016, I started seeing Dr. Arora, and

87 in November I started on Sodium oxybate (Xyrem). Over the next few months my symptoms began to improve to the extent that I tend to describe the difference as “having a new brain.”

When I was diagnosed with narcolepsy 20-years ago, I did not have disrupted sleep and so doctors did not ask about the quality of my nighttime sleep. Also, prior to becoming a graduate student, I lived without health insurance and relied on a medication assistance program and pro bono doctors’ visits to treat my narcolepsy. I did not think to tell them about the change in the quality of my sleep, and of course, they never asked.

Over the course of the last decade, my experience of excessive daytime sleepiness, memory problems, and disrupted sleep gradually worsened, but I was largely unaware of this worsening and so were the doctors I saw. I am tempted to try to make sense of how and why I was unaware of something that seems so obvious in hindsight, however perhaps it is better if I offer this part of my story as an example of the types of absences narcolepsy creates in the lives of those it touches. The sleepiness chipped away at my days without raising an alarm—this is how it works in the lives of many people. My work on this project provided the missing pieces of information that led to this new brain and this new understanding of types of obstacles that exist in treating rare yet disabling conditions like narcolepsy.

My self-reflexive story of living with narcolepsy is integrated into the dissertation in a few ways: I offer subjective descriptions that are not a part of observations or interviews; I write with an autoethnographic voice that uses narrative to support assertions and to present patterns; my accounts and feelings show up in

88 conversation with my participants; and I have a chapters that are dedicated to my journey with narcolepsy. As I use writing to map out the journey, I am accompanied by a number of fellow voyagers who have shared their maps in the form of autoethnography. I am accompanied by Lisa Tillman’s forays into the land of bulimia.25 I am also joined by

Rachel Alicia Griffin’s Black Feminist Autoethnography rooted in the desire to “talk back” to systemic oppression.26 Nathan Hodges’s “American Dental Dream,” on the way bodies are marked by socioeconomic class, reminds me how to use autoethnography to present information and stories that other methods of writing and research tend to silence and undermine.27 Devika Chawla’s “Between Solids/Monologues in Brown: A Mystory

Performance” is a map of moving between geographies that mark bodies as (not) belonging or (not) desirable.28 Nicole Defenbaugh’s book, A Narrative Journey of the

IBD Body, maps out how to blend autoethnographic sensibilities with performance and critiques of medical practices.29 Together, with these maps and the guidance of others, I have constructed a way to show readers how to navigate the terrain of my narcolepsy.

Crafting the Narratives

I began creating logs of the interviews, which are brief accounts of what transpired in an interview organized in summaries that included descriptions of everything I suspected could become relevant to the eventual dissertation. I also began transcribing interviews in the summer. I organized the photos and archived materials to be able to return to them after analyzing selected second interviews to highlight the experience of narcolepsy in specific spaces. I decided to organize the dissertation using a case studies approach to highlight stories of narcolepsy in specific spaces. Therefore, I

89 chose to highlight narratives of home (Elaine), work (Penny), driving (Sable), and being active with narcolepsy (Cynthia) because these interviews included moments that punctuated key aspects of what I was learning about narcolepsy.

Interview transcriptions were analyzed using the interpretive phenomenological analysis method (IPA), which encourages case study approaches to qualitative research.30

I used Johnathan Smith and Mike Osborn’s chapter, “Interpretive Phenomenological

Analysis” to guide my exploration of the selected interviews. According to Smith and

Osborn, the aim of IPA is, “to explore in detail how participants are making sense of their personal and social world and the main currency for an IPA study is the meanings particular experiences, events, states hold for participants.”31 I analyzed the first interview by writing on a printed out transcript, and for later interviews I used Microsoft

Excel and Microsoft Word to analyze. The steps of phenomenological analysis began with adding line numbers to transcriptions. The next step was to make note of what was interesting or significant about the interview going line by line.32 After going through the whole transcript, I returned to the top and began noting emerging themes with, “concise phrases which aim to capture the essential quality of what was found in the text.”33 Then

I grouped themes into clusters, and I created a table of themes to allow me to trace particular clusters back to parts of the transcription using the page number and line number. Finally, I organized the table to determine which themes fit with the others and which do not. Since these were fairly long interviews, I also focused on the categories of themes that were the most populated.

90 I approached the task of writing about each space and participant as an active participant in the scenes I crafted. In doing so, I weaved in details from fieldnotes, observations, photographs and other sources to create a rich and immersive story of a person with narcolepsy in a specific location. I tested different tenses in crafting the narratives to help give each chapter its own character. After I present each narrative, I reflect on the story of the interview by elaborating on what it reveals about narcolepsy before sharing stories from other interviewees that nuance or counter the themes in the case study. Each chapter presents an individual’s relationship between place and narcolepsy while also exploring what the place means across different subjectivities.

Ethical Considerations

Credibility refers to the believability of the link between the participants and the analysis, between the interviews and the codes that emerge, and the perceived accuracy of the process and writing about it.34 The credibility of a research project rests on the project’s practices to ensure a high level of consistency throughout the stages of the research project, and through the researcher’s ability to communicate with readers and participants in a clear and effective manner.35 One of the ways to improve credibility is by spending time with participants.36 My ongoing relationship with the people in this project therefore strengthens the credibility of this project. I also manage credibility by including multiple angles of analysis, including member checks, and by including multiple sources of data/information and multiple techniques for data and information gathering.37 Transferability refers to qualitative research results that can be transferred to other contexts and situations beyond the scope of this particular project.38 By striving to

91 paint a full and rich picture of the research context, I allow readers to determine for themselves if the meanings they uncover in the thick descriptions can be transferred to another context.39

This project holds the concept of validity in skeptical regard because it aims to critique assumptions about knowledge production processes. Aside from this critical component, the project embraces a form of pragmatic validity that evaluates studies based on the extent that they produce knowledge that leads to social change-directed actions.40 Self-reflection, member checks, and continual verification of findings are a part of this project’s research design that work to ensure a high level of validity. As an insider,

I never leave “the field” and will not be taxed by the burden of negotiating an exit.

However, I will leave the graduate program and Ohio and ever since increasing my involvement in the group I have also increased discussions of the temporary nature of my role in a support group with many support group members and with Jane. I engage participants as both a peer and as a researcher, and that relationship will be sustained far beyond the duration of this project and its discursive iterations. In the next chapter I narrate further some of my own experiences of living with narcolepsy.

Chapter 3 Notes

1 Utley, Narcolepsy, 22–23. 2 Lindahl et al., “Archiving the Voices and Needs of Katrina’s Children: The Uses and Importance of Stories Narrated Survivor-to-Survivor,” 65; Lindahl, “Legends of Hurricane Katrina: The Right to Be Wrong, Survivor-to-Survivor Storytelling, and Healing,” 139; Eugene, “Bridges of Katrina,” 1509. 3 Lindahl, “Survivor to Survivor,” 1506. 4 Poulos, Accidental Ethnography, 89; Pink, Doing Sensory Ethnography, 2015, 83; Constantino, “Dialogue,” 212.

92

5 Geertz, Local Knowledge, 19–26. 6 Jones, “Performance and Ethnography, Performing Ethnography, Performance Ethnography,” 765. 7 Harvard University, “Sensory Ethnography Lab”; Nakamura, “Making Sense of Sensory Ethnography: The Sensual and the Multisensory,” 123; Pink, Doing Sensory Ethnography, 2015, 4. 8 Pink, Doing Sensory Ethnography, 2015, 25. 9 Lindlof and Taylor, Qualitative Communication Research Methods, 10. 10 Ibid. 11 Ibid., 11; Foley and Valenzuela, “Critical Ethnography: The Politics of Collaboration,” 217. 12 Lindlof and Taylor, Qualitative Communication Research Methods, 11. 13 Lindahl, “Legends of Hurricane Katrina: The Right to Be Wrong, Survivor-to-Survivor Storytelling, and Healing,” 139. 14 Brinkmann and Kavale, InterViews, 109. Brinkman & Kavale discuss ideal types of interviewers and my approach reflects the ideal of a participant where the goal is not to find facts to analyze but to co-produce utterances in the situation of the interview. 15 Pink, Doing Sensory Ethnography, 2015, 80. 16 Rubin and Rubin, Qualitative Interviewing, 36. 17 Dubé et al., “Interviewing in Situ: Employing the Guided Walk as a Dynamic Form of Qualitative Inquiry.,” 1093. 18 Ibid., 1095. 19 Butler and Derrett, “The Walking Interview: An Ethnographic Approach to Understanding Disability.,” 2. 20 Jones et al., “Exploring Space and Place with Walking Interviews,” 3–4. 21 Butler and Derrett, “The Walking Interview: An Ethnographic Approach to Understanding Disability.,” 2. 22 Ellingson, “Interview as Embodied Communication,” 526. 23 Bloomberg and Volpe, Completing Your Qualitative Dissertation, 336. 24 Pink, Doing Sensory Ethnography, 2015; Pink, Doing Sensory Ethnography, 2009. 25 Tillmann, “A Secret Life in a Culture of Thinness: Reflections on Body, Food, and Bulimia,” 78. 26 Griffin, “I AM an Angry Black Woman,” 80. 27 Hodges, “The American Dental Dream,” 943. 28 Chawla, “Between Solids/Monologues in Brown,” 52. 29 Defenbaugh, Dirty Tale, 44–45. 30 Smith and Osborn, “Interpretive Phenomenological Analysis,” 56. 31 Ibid., 53. 32 Smith and Osborn, “Interpretive Phenomenological Analysis.” 33 Ibid., 68. 34 Jensen, “Credibility,” 138. 35 Ibid. 36 Ibid. 93

37 Ibid.; Ellingson, Communicating in the Clinic, 17; Lindlof and Taylor, Qualitative Communication Research Methods, 271. 38 Jensen, “Transferability,” 886. 39 Ibid. 40 Miller, “Validity,” 909; Lindlof and Taylor, Qualitative Communication Research Methods, 272.

94 Chapter 4: Hiding Sleep—Identity, Place, and Communication about Narcolepsy

I handed out two copies of my resume to my students, one was on gold paper and the other was on purple paper. As I gave the last two to Angela, Oliver raised his hand. I acknowledged him and asked for his question. “What’s with all this narcolepsy stuff on your resume? It seems to be something you are really in to.”

As his words passed through my ears, time slowed. I considered the implications in the space of a second that adrenaline stretched out. My brain saw the question as a sign of danger. In the next breath I took, I calculated my options and replied with pseudo- confidence that I had chosen and executed my decision well. I could: (a) admit that I have narcolepsy and then proceed to meander down a detour that required me to introduce narcolepsy and my research as quickly as possible; (b) ignore or deflect the question and therefore risk overtones of defensiveness; or (c) tell a “white lie” or a half-truth. I chose the half-truth.

I offered a response without showing my surprise or fear, “When I was in grad school I studied narcolepsy.” I spoke with an urgency that implied that I did not have time to go over any particulars. I tried to avoid inadvertently signaling my feelings of turmoil by continuing with the lesson.

“One of these is a sales resume and one is used to get a job in education. Can you tell which is which?” I wanted to share my old resumes to show them that even though they might already have a generic resume, an effective resume is one that makes an argument for a specific type of job. Since no one in my group owned a computer, I

95 figured out how to do a resume workshop with borrowed laptops but each day I would discover new things that Oliver and the others made do without.

A few years ago, I had the opportunity over the summer to work with the Hocking

Athens Perry Community Action Program (HAPCAP) as a job coach and helped underprivileged youth between the ages of 14 and 24 get job experience and gain resources to help them in the job hunt. Most of my participants had finished high school or had received a GED and half were young parents with few job prospects. I also was like a supervisor in that I was responsible for collecting hours worked and distributing paychecks. As a person who had more power in the organization, I wasn’t afraid of them knowing about my narcolepsy. Rather, I was afraid of something else.

I had been working for a few weeks as a job coach by then, and this job was full of surprises. Despite my reticence about holding a job that expects me to be awake and alert between the hours of 9:00 am and 5:00 pm, I felt I had everything under control.

When sleepiness made itself felt during the day, I would visit one of half-a-dozen single- user bathrooms to take a short nap for about three to five minutes. Inside one of these spacious bathrooms, it was pitch black when the lights were off because the oversized door was flush with the floor. No one could have seen that after closing the door I turned the light off; no one could have known I sat on the floor where I would set an alarm on my phone and close my eyes for a nap. There was no way for them to know that I was napping—or that I had narcolepsy. Like the people I oversaw, my employers did not need to know that I also found places to nap on the route home when I was exhausted after a full day’s work. The act of sleeping in bathrooms and on commutes pushes against the

96 socially-constructed meanings of these shared spaces, and so, even if I had permission, my difference still marked me by the way I failed to move within these places in the correct way.

I didn’t think anyone needed to know about any of this—most especially my employers. I found freedom in that type of privacy. I had a shared work space and there was no downtime—no moments when I would be vulnerable to suddenly falling asleep where everyone could see. Oliver’s innocent question threatened a fragile truce I forged between the world and me. This was a visceral threat. It was a hanging thread that taunted us both. If my conversational partner or I pulled at it, my dress would be undone and I would be vulnerable in a way that few people can appreciate—or so I thought. I refused to let this question undo me. My past experiences with disclosing my condition to employers, who typically expect individuals to be alert and productive for eight hours a day, taught me to keep my diagnosis secret and that I must guard this secret as if my job depended on it. More than the content of his question, it was this fraught context that transformed the question into a weapon. Not the context of my personal history with disclosure, stigma, and research, but the context of employment and all the baggage that goes along with it.

Ableism, Autoethnography and Place

Like many people with narcolepsy and other disabling chronic conditions, I did not ask for accommodations. Nor did I recognize that the shame and fear that kept me silent was not freedom— and it was not simply an attempt to avoid discrimination. Part of my silence was an expression of self-loathing and a form of internalized ableism.

97 Ableism, according to Simi Linton, involves, “the idea that a person’s abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to nondisabled people.”1 In her essay, “Reassigning meaning,” she goes on to explain that while there is legal and conventional consensus about what can be labeled racism, sexism, and classism - the nature of ableism or the oppression of disabled people, requires more research to better understand it.2 If we approach my story in this way, we can see the improvisational problem-solving skills and sense the emotional labor that goes into passing. Linton explains that a person’s continuous hope of passing and hiding their disability takes a toll that weakens ties to the disability community, creates anxiety, compounds self-doubt while also affecting one’s social position and relationships.3

Therefore, according to Linton, “coming out” for people with disabilities is a way of recognizing how the ceaseless work of passing and trying to fit-in was ultimately not personally fulfilling and was not building meaningful relationships.4 Consequently, rather than approaching my stories from a disclosure and privacy management perspective, I want to approach them from a disability studies perspective to reflect on the ways ableism is at work in the way language, place, and bodies interact.

When autoethnography takes up the task of depicting the complexity of lived experience and the discursive construction of meaning, it can yield rich and insightful descriptions. Accordingly, this chapter will use autoethnographic reflections, phenomenological description, and research to argue that hidden disabilities exist in contexts that obscure how bodies differ—in other places these same disabilities may be perceived, acknowledged and/or understood. My choices to reveal or conceal narcolepsy

98 and the work of hiding sleep and sleepiness reflect the way place is an expression of social relations.

As Sarah Pink explains, ethnographic research is “emplaced in social, sensory and material contexts, characterized by and productive of particular power configurations that they experience through their whole bodies.”5 As an autoethnographer, my racialized, gendered, neurodiverse body is continually emplaced in the configurations of a place and is entangled in the phenomenology of a particular place. As such, my and others’ experiences of hiding or revealing can be analyzed in relationship to the way place is constructed through overlapping, complex and contradictory messages.

Many authoethnographic writers seek to bring the body along with us as we engage the topics we research. Yet, in writing as in speaking, the words do not always come easy. My story failed to implicate my racialized body or my gender, and once I discovered this, I decided to discuss it instead of changing it. By not foregrounding race and gender, I inadvertently erased it. The structural default of whiteness is not unlike the presumption of being able-bodied. For both are marginalized identities that are responsible for bearing the work of diversity—teaching the diversity courses, reminding southerners who lost the civil war, pointing out the biased policing, requesting accommodations, explaining our pathologies, and mobilizing to change minds. Like

Rachel Alicia Griffin’s black feminist autoethnography, in articulating her anger she sought to do the very thing that black women are “discursively disciplined not to do.”6

My willingness to reveal the intricacies of narcolepsy is radical because it can happen only because it is a testimony to my belief in myself—my virtuosity, confidence, and

99 resilience—in the face of a racist, sexist, and ableist world. It is also a way of acknowledging that effort expended on fitting-in and passing was not helping me reach my goals. This autoethnography is seeks to reimagine ways of communicating about narcolepsy by returning to the places that help construct the meaning of sleepiness and sleep.

This interpretive autoethnography is both a process and a performance. As

Norman Denzin describes, these are autoethnographies that:

emphasis on self, biography, history and experience must always work back and

forth between three concerns: the concerns of performance, or process, and/or of

analysis. A focus on performance produces performance texts, the tale and the

telling.7

The telling of stories and the telling of the telling are both subject to analysis and reflection.

Communicating about narcolepsy requires attention to how something as banal as sleep is expected to occur in specific places, and for people with narcolepsy, it is exactly this cultural expectation that they fail to reach time and time again. By revisiting sites where sleep and communication about narcolepsy occur, I suggest that place circumscribes what bodies can and cannot do through the social relations that bring a place into existence.

Using autoethnographic descriptions of narcolepsy and place, I will describe some of the ways place participates in the construction of meaning. The metaphor of an echo is

100 an example of how place and communication can create experiences, meaning, sounds, and understandings that are tied to a specific place and utterance.

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For people with and without medical conditions or disability, communicating about one’s subjective experience of their bodies may at times be difficult. It is especially hard when someone has a condition that is contested8, denied9, and/or meticulously hidden10 in everyday life. Speaking about narcolepsy is perilous. It invites embarrassment, negative feelings, stigma, and a lot of other unwanted happenings.

Therefore, I was initially ambivalent about an invitation to speak about my experiences with narcolepsy, even though this invitation might be an opportunity worth taking despite all the risks it entailed. I deferred to my advisor, who saw this as an opportunity to grapple with my reticence and with all the issues around telling a story about a potentially discrediting and stigmatizing condition. I accepted the invitation to speak at a pharmaceuticals educational event devoted to raising awareness about narcolepsy for health insurance workers and, in the end I learned a lot about the work of communicating about an often-misunderstood condition like narcolepsy.

I chose to frame my twenty-minute presentation around the idea of a paradox. I wanted to tell a story that included heartbreak and hardship, but I also needed to practice crafting a story about narcolepsy that intentionally framed how I wanted people to regard my work and me. In other words, I approached this storytelling opportunity to craft a story that not only humanized me but also framed me in terms that made me seem credible and trustworthy.

101 I spoke about how I was diagnosed and how I excelled in school and college, only to enter a workforce that was eager to fire people for falling asleep. This experience introduced me to a time when my self-confidence was severely injured, and I kept asking myself, “How can I ask others to trust me if I can’t even trust that I can stay awake?”

Many people with narcolepsy struggle with depression and this is part of the reason. Self- employment, in the form of starting a business selling books online, was how I regained much of my self-confidence and climbed out of that dark place in my life. 11 Working for myself showed me that I was valued and could add value to the world despite my sleepiness. I just needed to always make time and space for sleep, sleepiness, and both scheduled and unscheduled naps.

I ended the presentation by pivoting towards my dissertation research, highlighting how the people I interviewed were diagnosed as adults and therefore they did not have the type of emotional and familial support that comes with being diagnosed at a younger age. Hence, they are still learning what I had to learn many years ago: that they are still valued, that they can still add value to the world, but that they will always need to make time and space for sleep, sleepiness, and both scheduled and unscheduled naps.

Only much later did I realize that my choice to try to balance things out likely came from what Annette Madlock Gatison found when she studied how messages about the mythical strong Black woman create a spiral of silence that keep Black women from seeking emotional support or help while dealing with breast cancer.12 The myth of the strong Black woman, which originated as a justification for keeping Black women

102 enslaved, presents a picture of a Black woman who is innately strong, self-reliant, and able to deal with any challenge and any adversity.13 This also means that expressions of weakness and vulnerability are not things that strong Black women do. Talking about trauma and illness should be rhetorically framed as evidence of might and fortitude.14 My hope in balancing the negative sides of narcolepsy with the positive is a habit based on my intolerance of weakness and vulnerability—an intolerance that Black women unconsciously and/or consciously reinforce and reinscribe when we go through hardship.

Also, around this time, I began to think about what most sets me apart as a scholar and narcoleptic. My need for intellectual stimulation to stay awake and the need to research as a scholar keeps me thirsty for new ideas and keeps my brain busy teasing out the workings of salient social and historical problems. My ferocious appetite for books and knowledge keeps me awake. It feeds me and my narcolepsy feeds it. This is, again, another way that I am dauntless in my resistance to discussing the experience of being easily distracted in a positive light. As much as I like to think that listening to audiobooks, podcasts and the newspaper while going about my day keeps me more awake by crowding out space for inertia, idleness, and sleepiness—it also keeps me unable to think about, much less speak about, the toll of excessive daytime sleepiness.

This tendency to frame bodies and experiences in binary terms—as good or bad—is hard to shake. Especially when wrestling with a neurodiversity condition that has some marvelous perks like epic dreams, lucid dreams, and a doctor’s prescription for eight hours of sleep every night. The paradox of being a PhD student with narcolepsy—and an

Assistant Professor with narcolepsy—is that so long as most people think of sleep and

103 wakefulness as a binary, they will also tend to regard sleepiness and sleep in terms that will pull me towards one of two directions: framing narcolepsy as a strong Black woman or not speaking of it at all.

Speaking about narcolepsy when you have a captive audience is quite different from the type of conversations that include impromptu disclosures. Yet, each time I speak about narcolepsy, it is like I am practicing for a future conversation—as if I am building a set of skills that will be used to reach someone who is otherwise unreachable. At the event a pharmaceutical company put together I metaphorically could reach this otherwise unreachable man who was having difficulty with the idea of excessive sleepiness.

During the Q&A session he was one of the first to offer a question, which was,

“What is the difference between sleepiness that I would feel and the sleepiness of someone with narcolepsy?”

Dr. Ramirez, the sleep doctor invited to discuss the more clinical dimensions of narcolepsy, took a stab at answering by revisiting what he talked about when he introduced the physiopathology of narcolepsy—pointing out that excessive daytime sleepiness is not a normal type of sleepiness. The man in the middle of the audience retorted, “Yeah, but how is it different?” The other person with narcolepsy who did a presentation, Michelle, added that, “the normal person would have to stay awake for three days to experience the level of sleepiness that a person with narcolepsy feels.” Yet even this was an abstraction. He needed words that did not obfuscate the difference between narcolepsy and non-narcolepsy. Another person asked a question, and I took my

104 opportunity to speak to address this new question and to weigh in on the prior question embodying the fundamental misunderstanding about narcolepsy.

I explained, “It isn’t sleepiness, it is sleep. People with narcolepsy experience intrusions of sleep in waking life. The way I usually explain it is this: narcolepsy is an autoimmune condition, and so the immune system attacked the part of the brain that regulates sleep-wake pattern so sleep doesn’t occur in a consolidated matter—all at once.

Since this part of the brain isn’t working, they are not getting sleep at night; instead pieces of sleep are scattered throughout the day. It may or may not look like sleep, but that is why it is more than just sleepiness.” I also mentioned that this explanation borders on hyperbole, but it was one the physician seated beside me could verbally agree with.

This answer simplifies the complexities of the brain and overlooks the fact that the exact nature of the physiopathology of one type of narcolepsy is unknown, while there is a lot known about another form of it. Narcolepsy is often spoken about using a language that was designed by and for doctors but often fails to communicate basic ideas to people who are not a part of the world of sleep research or sleep disorders. The term “excessive daytime sleepiness” fails to mean, which refers to terms that fail to provide listeners with the intended meaning.15 While it does describe a symptom of narcolepsy, it does not adequately note what is altered in narcolepsy. Excessive daytime sleepiness obscures the variation instead of clarifying it.

After the Q&A, while we were still sitting at the table, a woman approached

Michelle and me to thank us for coming to speak about life with narcolepsy. This audience member explained how she usually treats health insurance requests regarding

105 narcolepsy in a quantitative manner, asking the doctor to provide information about how many episodes they had, how long they lasted, how often they occur, and how severe they are. She explained how, “now I see that it is much more than that.” This was a pleasant surprise; Michelle was so delighted with the unsolicited response that she wanted to approach lingering guests to see what they thought. Their appreciation was also profuse. They were sitting when we approached, and as they began to head to the door, we shook hands and accepted their gratitude as gracefully as possible. I shook hands by taking a handshake into my both of my hands to express my appreciation for joining us— which is not how I usually shake hands. However, there was nothing usual about this type of event—a time and place where the experience of narcolepsy could be seen, and where attendees wanted to see it from the perspective of the people who live with it. This type of gratitude, the nature of the presentation, the level of understanding, and the relationships that it forges, are possible because someone decided to carve out a place and time for these things to occur. The pharmaceutical company had very pragmatic reasons to recognize how misunderstandings about narcolepsy have material consequences that took the form of health insurance companies making it more difficult for people with narcolepsy to access medication and treatment. However, the event did much more than accomplish this pragmatic goal. It also created an echo.

Echoes reverberate from a starting point that includes a specific place and a specific acoustic event. Like echoes, this event created something new. I had a better understanding of what it takes to be a patient advocate and learned to balance the discrediting memories with information that showcases my talents and how hard I have to

106 work to be so productive. My critique of my approach allows me to make a new sound and create an event that bounces off and lags behind the original event.

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In my classroom, I discovered a way to get outside of the binary by introducing my students to the concept of neurodiversity. My once-idealized hopes about what it could mean to have narcolepsy at a university have tarnished from exposure to research about how universities are structured in such a way as to weed out people with neurodiverse ways of being.16 The 1947 Truman Commission Report on Higher

Education sounds like it was written recently when it declared:

If colleges are to educate the great body of American youth, they must provide

programs for the development of other abilities than those involved in academic

aptitude, and they cannot continue to concentrate on students with one type of

intelligence to the neglect of youth with other talents.17

These admonishments are still relevant because of several trends in higher education that encourage quantifiable assessments, results, measures, and growth. Consider an occurrence in the spring of 2017, in a course I teach called Communication between

Cultures, which takes a co-cultural approach to intercultural communication. In the unit on disability, I used our discussion of neurodiversity as a vehicle for talking to my students about narcolepsy. I had them read and answer questions about Nick Walker’s essay, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology

Paradigm.” The pathology paradigm is the idea that there is a “right” or “healthy” human

107 brain, and if your brain functions in a way that diverges from the dominant “normal” brain, then there is something wrong with you.18

After talking about the concepts of neurodiversity in the reading, I introduce them to the word “neurodivergent” and explain that, “this is the word that I like to use when I talk about how my brain is different.” After talking about narcolepsy briefly, I shared the viral video “This is what narcolepsy looks like, Spoiler alert, it sucks.”19 While usually

I’d make sure I had time for a Q&A, this time I was able to start the next class with a discussion of narcolepsy. The point of sharing this is not to share my story but to discuss how sharing my hidden disability invited discussions and papers in which students spoke candidly and critically about their neurodiversity—anxiety disorder, ADD, ADHD. One student used her final essay to write about how she used to think that there was something wrong with her, but now she is working on accepting herself and her anxiety disorder in a way that recognizes the harm in internalizing ablest ideas. I still have a lot to learn about teaching disability and modeling a healthy relationship to one’s body and pathologies— but as an instructor, over the course of the term, I could teach in a way that transformed the classroom into a space where bodies did not need to be measured and compared. I also am able to be honest with myself about the ways that grades are ableist tools while using them to establish expectations and measure growth.

The act of speaking to others about narcolepsy took a lot of practice because I tend to view vulnerability as a White privilege. In more than a few times, I have found myself listening to moving accounts of vulnerable White men and women, while wondering if these same stories were told by someone of color or Black, would their

108 vulnerability be received as ammunition to attack, devalue or dismiss the minority?

Emily Martin’s ethnography of Bipolar, Bipolar Expeditions: Mania and Depression in

American Culture, includes a scene when she was shadowing doctors who regarded a young Black man and had given an ambiguous diagnosis of bipolar disorder because of the way mania is associated with success and power, “the disallowed combination is to be manic, powerful, and black all at once.”20 Medical categories exist alongside of historical categories of race that sought to define human capacity in racialized terms. The racist history of the IQ test and their collegiate admission offspring are the biggest reminders that education is a place where difference is marked in discursive ways.21 Like the incommensurability of mania and blackness that Martin noted in the way doctors read a

Black patient’s symptoms from the perspective of White doctors, my audience is more often than not, White, and therefore their capacity to see me as vulnerable or strong is contingent on whether they find these ideas—Black, vulnerable, teacher—to be commensurable.

As a first-generation Black female with a neurological disability, I approached graduate school unwilling to talk about my narcolepsy unless absolutely necessary.

Therefore, I instituted an informal prohibition. My scariest memories of being in a classroom was not when I lectured for a class of 400 students, rather it was the moments leading up to the first time I ever told a class about my narcolepsy. At this point, I thought of classrooms as familiar spaces that required the opposite of narcolepsy— vigilant alertness, attention, and action. The act of speaking about it became an opportunity to realize that for a year and a half I had been keeping a big part of who I am

109 outside of the classroom. Parker Palmer’s book, The Courage to Teach, speaks about how many people are unable to bring their whole being into the classroom to teach fully as vulnerable, complex and multifaceted people.22 Speaking about narcolepsy brought the part that was not allowed into the classroom and the resulting wholeness was larger than the sum of these parts. The experience of bringing, what Palmer calls, my “whole self” into the classroom allowed me to see how flat and one-dimensional I was being when I strived to pass as able-bodied. Moreover, it reminded me that college students like talking about sleep, and many of them love sleep—they are exploring sleep, sleeplessness, and everything in between in ways they could not previously do as people whose sleep wake patterns were dictated by their parents.

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This morning I awoke to familiar tingling felt throughout my body. I have come to think of this as the pleasant feeling sleep brings. For me, when sleep goes away it often leaves little pieces of sleep behind—parts of sleep that narcolepsy unbinds. I smiled widely at the feeling of happiness and pleasure, and then I heard my cat give a questioning meow, “Are you up?” This is before the more persistent meows that seem to say, “Now! Now! Feed me Now!” She sits and waits to see what will happen. When I see my white fluffy cat with one blue eye and one amber eye, I tell her, “You are so adorable.” Not placated, she stares back.

I think she can hear me breathe—that must be how she knew that I was awake.

Her confidence slowly builds as she starts to inch further into my bedroom. I forbade her from being in here when I am asleep because her licking and scratching can easily wake

110 me, but she is still allowed to be my immutable alarm clock. I checked my iPhone—two minutes before my alarm. This should feel like a good thing, but it is like those two minutes of sleep were stolen. As I start to think about writing, I notice the brisk air. The alarm goes off. As I sit up my cat bursts out the door towards her bowl only to return for her slow fumbling human.

These days, I generally move slowly in the mornings. Jumping out of bed was a thing I used to do to run away from the sleep and sleepiness that could tackle me if I lingered even a minute too long in bed. Alas, my low blood pressure makes me often blackout or get dizzy when I attempt such stunts, so after I sit up, I linger. Thinking. My cat’s meow breaks through to me and coaxes me out of my bed.

As I walk down the hall I tell her, “Yes, I am coming” while she continues her song while pacing in front of her bowl.

After her feeding, I pick out a pair of pants and a long-sleeved shirt to go for a run. I pause, recognizing that if I sit on my bed I might lay down and fall asleep soon thereafter. I take the risk for the sake of pulling wool socks over my cold feet. I turn to my iPhone again. It is so surprising how my iPhone pulls on me. How the room also pulls me. I pick up the sleep log and note yesterday’s eating times and how long I slept. I put an “M”, for meal, in this hour trying to talk myself into sticking with the plan of getting up to write and eat before going for a run. I also put an “E” for exercise two hours later in hopes that I will be ready for a 3-mile run by then.

Soon I have fixed oatmeal and tea before taking a seat in front of my laptop.

While eating, I look at what I sketched out the night before. The email application was

111 open and I realized that this will be a distraction so I close it. I am compelled to Google something and check something online before I decide to turn off my Wi-Fi to help me focus on writing. This usually works. No Internet means there are no impulses to use it to answer a question that would pull me away from writing. However, this time something else was getting in the way of writing. I couldn’t come up with words. My eyes got heavy and I realized that I was too sleepy. I didn’t want to go back to my bed. I had 7 hours of sleep and had a lot of reasons to not be sleepy, but they mean nothing when you cannot think. After recognizing what was happening, I decide to get up from my desk and return to my bedroom to lay down. Feeling defeated. I also recognize that this is the luxury of the weekend. Who decides to wake up at 5:30 a.m. on Saturday? Yet, I know that pull to get back in bed is not a luxury, it is narcolepsy. It is also yesterday’s choice to lay in bed until 9:00 a.m. coming back because the choice to stay in bed yesterday created a pattern that my body thinks it should follow. Sleep hygiene includes maintaining behaviors that help tell the body when to sleep and when to be awake. I spend a lot of time and energy trying to maintain good sleep hygiene, even if it means waking up at 5:30 a.m. on the days I do not teach at 7:30 a.m. When you have a body that does not naturally separate sleep and wakefulness this part of the day can be difficult.

My run will have to wait. I lay down without changing clothes and let sleep in. I awaken over an hour later to a cacophony of ideas about how good the run will feel and the things I should do today. These thoughts should pull me out of bed; however, too often they have the opposite effect. These are also pieces of leftover sleep. They come with inertia as they compel me to be still and pay attention. This is also the part of

112 narcolepsy that is a gift, one of its gifts—upon waking sometimes my brain is still in overdrive. During sleep the brain reaches levels of activity that exceeds what it is capable of while awake; the porous boundaries between sleep and wakefulness mean that I am often able to use naps to access what I call my committee of sleep. If I have a dilemma that I must sort out I am able to take a nap or wait until the morning to see what my committee of sleep comes up with—it sounds like a joke but it works. While I do not always need a nap to access this heightened state of mental activity, it is not something I can easily create much less control.

My inert body moves into and out of sleep without preamble or warning— especially when this inert body is in bed. If I am lying down, not only am I in danger of falling sleep, but when this happens the only thing I am aware of is awaking. The memory of falling asleep, as for most people, is a memory that gets erased. The urgent thoughts that slow me down are erased. The moments preceding sleep also disappear because the sleep cycle’s process of memory consolidation.23 Perhaps, if people could recall the experience of falling asleep—the gradual loss of perception, thinking, feeling, and action—sleep would seem less appealing. Often my experience of sleep is an eclipse of the Western subject that others think of as akin to death, but either way sleep is an absence that must exist unfelt.

As I sat in bed again, I thought about writing this chapter and realized that this room, my bedroom, is an example of what I am hoping to communicate. The choice to paint the walls a muted yet bright yellow was in recognition of the mutual interdependency I have with this space. Its walls influence me and I influence the walls.

113 It changes me and I change it. The place where I decide, more often than not, to don clothes that overcompensate for my non-male non-white neurodiverse body is also a scene where I communicate about narcolepsy. It is a place where I can interrogate ableist lies or wield them to get me out of bed.

In this most intimate of places, getting up means something to me that it does not mean to others who sleep until 10:00 am, or later, on weekends. My narcolepsy conspires with the room to allow certain understandings of narcolepsy. I know, for example, how too many of these late starts may lead to depression or signal the presence of depression.24 Hence, my daydreaming and roaming thoughts—no matter how fruitful, urgent or insightful they maybe; they also are a Trojan horse. Yet, sometimes my self-talk is pragmatic. Knowing that staying in bed after waking up is correlated with depression means that I avoid this because narcolepsy’s number one comorbidity is depression.25

Over time, I learned that getting up early with a sense of purpose helps avoid lingering.

While in my room, in my bed, sitting still has come to mean that I might be inviting sleep into my morning. This is how the active agent—my alert and aware self—starts to disappear. Is sitting on my bed okay? How can I know that I wouldn’t get sleepy while doing something else? Only in this room is it okay to openly recognize the way that narcolepsy is a force with a great deal of agency and control in my life. In my bedroom, it is okay to strike deals with narcolepsy and to sometimes come out short. These intrapersonal dialogues are okay because sleep and sleepiness belong in bedrooms. It is okay when it is a weekend and I do not have to be somewhere soon. It is even okay if the day begins with this type of defeat—trading in my plans for an unexpected nap.

114 Here in the bedroom, self-talk about choices and graduate student excuses can fail or succeed. Ableist thoughts surface as negative self-talk, and it succeeds when it creates stress and guilt around sleepiness and sleep. Ableist negative self-talk fails when we— narcolepsy and me—have a truce and I am able to start the day without a sense of disappointment in being unable to execute the elementary task of waking up. Resentment, shame and negative thoughts about narcolepsy are not welcome in my bedroom. In this way, the room allows me to start the day before my feet touch the floor. My understanding of narcolepsy and my sleepiness is mediated by the purpose and intimacy of the bedroom.

All the above ruminations were quickly jotted down as I sat in my bed under my teal down-filled duvet. These types of ruminations belong here—on this page, in this place. Such negotiations and truces mark difference when they occur in other places—at work, in the car, or in class. These places require an answerability that does not recognize the way that sleep makes uninvited intrusions in my life. Sleep cannot do anything in these places. Public places require another way of communicating about what people can and cannot do. Health communication can strive to incorporate disability studies language into its research to recognize how some bodies do things that other bodies cannot do. And affirm that such differences are okay.

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The absence of evidence is never evidence of something; this is a basic principle of logic. Despite the illogical nature of efforts that seek to use the absence of an action, object or pattern as proof, arguments like this do persist. The largest one that comes to

115 mind is the issue of finding weapons of mass destruction in Iraq. International search teams kept finding no evidence, and yet this became proof that they were hiding the weapons. Such is the rhetorical landscape we live in. The reason I sought to explore this issue is because one of the objectives of communicating the lived experience of narcolepsy and stigma is to provide the evidence that reveals the nature of life in a space where others will write absences. Consciousness, alertness and action are linchpins for studying social action, and yet the nature of their instability is underexplored and ignored.

Narcolepsy and neurological conditions that are disabling are often considered to be absent of agency, communication, and identity. Yet in these spaces where the body and intentional action are circumscribed by illness and disability, communication persists.

After all, as many contend, we cannot not communicate.26 The expression of these places and spaces are mysteries that researchers and affected individuals themselves must labor to solve.

An attention to the relationship between bodies and place is a way of bypassing the troublesome need to think of people in terms of will, choice, action, and other

Western concepts that were nurtured by a Cartesian absent body.27 Bodies exist in relationship to an environment, and it is this relationship that shapes how a person perceives the environment and their capacities. Narcolepsy is hidden because conventional wisdom says that sleep is a choice or is related to choices such as substance abuse, disinterest, exertions, and for sleep or sleepiness to occur outside of sanctioned places reflects a personal choice at some level. The places people with narcolepsy occupy are tainted with the recognition that sleep, sleepiness, scheduled and unscheduled naps

116 communicate the wrong message to those who see and learn about such departures.

Words further entangle people with conflict when language used to discuss narcolepsy fails to convey the essential difference of narcolepsy—the different brain that does not sufficiently regulate sleep and wakefulness. While a nuanced understanding of place is central to understanding how narcolepsy disables, place also provides opportunities to speak about narcolepsy in a way that is not disconfirming and offers the hope of creating and distributing new understandings of narcolepsy.

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The physical and geographical location of a person inscribes meaning and solicits action. As a person moves, their behaviors are shaped by the existence of structures that contain or allow a specific range of behaviors and interactions. Urban architecture and infrastructure allow or delimit behaviors and interactions that may not be checked in rural landscapes or undeveloped landscapes. Disability, both visible and hidden, is also re- shaped in tandem with the influence of place.

Social location expands these factors to include the complex ways in which location is mapped onto social relationships. Social location also denotes positions within institutions like employment or political systems. Place exists within a system of symbols that were shaped by the needs of the monarch, the warrior, and the merchant.28 Map technology has been nurtured by empiricism and rationalism and like any technology, it is not neutral.29 Accordingly, location, place, and space are concepts that, when taken seriously, have ontological and epistemological suppositions that affect knowledge claims and by extension, circumscribe the possibility of meaning.

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In the summer of 2005, I visited London where my sister was studying abroad.

This was the summer I finished a Master’s program and my Master’s thesis was on the cultural politics of sleep. I found it surprisingly easy to explain parts of my thesis project to the Americans I met in London. The anonymity of travelers freed me from social conventions that would have complicated these dialogues. Each time I told a fellow tourist that I was a graduate student who studied the social dimensions of sleep they responded with questions and intrigue. Eventually, I began to sense an opportunity to dialogue about my life with narcolepsy. Nonetheless, each time I declined the implicit invitation, choosing instead to talk about historical aspects of sleep and culture. Each invitation made the prospect of telling a stranger I had narcolepsy less intimidating until I faced the very last invitation at the end of my trip. These non-disclosures participated in a silent dialogue about sleep and narcolepsy that I was growing tired of. This silent dialogue cross-examined the mixed feelings I had about the risks and benefits of speaking about narcolepsy. I concluded that if ever I was going to experiment with talking about narcolepsy, strangers who I may never see again were perfect interlocutors.

On my flight back to the states, I had the rare luxury of flying across the Atlantic

Ocean on standby in a first-class seat. The charming White American that sat beside me was more than willing to introduce me to all the perks of my unexpected upgrade—the warm towels to wash my hands, the gourmet menu, the endless free mini bar, and the many snacks available on call. Thousands of miles in the sky I took a risk that I had never taken before. I told my graying seatmate about my narcolepsy. At this stage in my life,

118 the few negative responses I had to disclosures taught me to be averse to discussing narcolepsy with strangers. Yet, in this suspended metal tube surrounded by the privilege and comfort that luck awarded me, I shared this part of me with someone I just met. Over ten-years later, as I dust off this excavated memory and place it beside what sleep means in airplanes, I discover how planes are places where the unpredictable sleep narcolepsy fits—it is a place where, if only for a few minutes, rows and rows of awake and alert people find themselves seduced by circumstance to move between states of sleep and wakefulness in unpredictable and predictable ways.

Dialogues about disability are an integral aspect of the experience itself. It is unfortunate that people with hidden disabilities are less likely to talk about their condition because they still communicate about it through intrapersonal dialogues and through the ways they navigate everyday life. The dialogues individuals may have about their hidden disability can allow them to actively construct meaning with the people they confide in.

Dialogue is an essential part of coping and managing conditions within a context of biomedical interventions that view patients as passive receptacles of medicine and tests.

Putting the discursive creation of meaning in embodied and evanescent dialogues and utterances requires attention to place and context. Like maps, whose markings and lines inscribe power relations, claims about information and (dis)ability are also tied to the situatedness of the speaker.

Chapter 4 Notes

1 Linton, “Reassigning Meaning,” 161. 2 Ibid.

119

3 Ibid., 167. 4 Ibid. 5 Pink, Doing Sensory Ethnography, 2015, 38. 6 Griffin, “I AM an Angry Black Woman,” 139. 7 Denzin, “Interpretive Autoethnography,” 129. 8 Swoboda, “The Social Construction of Contested Illness Legitimacy,” 234. 9 Dickson, Knussen, and Flowers, “Stigma and the Delegitimation Experience,” 851; Japp and Japp, “Desperately Seeking Legitimacy: Narratives of a Biomedically Invisible Disease,” 108; Ware, “Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome,” 347. 10 Clair, Beatty, and Maclean, “Out of Sight but Not out of Mind: Managing Invisible Social Identities in the Workplace,” 78. For a generalized theory of invisible identity management based on studies in racial identity, illness, sexual identity. 11 Eugene, “Working While Narcoleptic,” 160. 12 Madlock Gatison, “The Pink and Black Experience,” 136. 13 Ibid. 14 Ibid. 15 Price, Mad at School, 19. Price uses this concept of “failing to mean” to discuss how she and others tried to usher in the concept of psychosocial disability to communicate the social disability that mental illness entails. However, after some time she realized that this was a term that failed to communicate the intended meaning to those who were new to the concept. 16 See, for example Ibid., 54–56. 17 Smith and Bender, “Truman Commission Report,” 87. 18 Walker, “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm,” para. 12. 19 Sleepy Sarah Elizabeth, What Narcolepsy Really Looks Like. Spoiler Alert- It Sucks. 20 Martin, Bipolar Expeditions: Mania and Depression in American Culture, 127. 21 Gould, The Mismeasure of Man., 149; Kaufman, Ungifted: Intelligence Redefined, 185. 22 Palmer, The Courage to Teach, 168. 23 Dement, The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection between Health, Happiness, and a Good Night’s Sleep, 254. Dement discusses how one of the possible purposes of sleep is to allow the formation of long- term memories. During sleep the brain sorts through experiences to make room for new experiences it eliminates other connections. 24 Ibid., 273. Dement discusses how in the research of Dave Dinges at the University of Pennsylvania discovered a link between not getting a full night’s sleep and mood. Also, other researchers claim that insomnia is the only definitive predictor of depression. 25 Zamarian et al., “Subjective Deficits of Attention, Cognition and Depression in Patients with Narcolepsy. [Abstract],” 45. 26 Watzlawick, Bavelas, and Jackson, Pragmatics of Human Communication. 27 Leder, The Absent Body, 13.

120

28 Haraway, “Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective,” 583. 29 Harding, Is Science Multicultural?, 39–54.

121 Chapter 5: At Work with Narcolepsy

People with disabilities face overt and indirect forms of employment discrimination because of reservations some may have about their capabilities.1 I discovered one such person while reading about Nicole Jeray, a famous American golfer who also has narcolepsy. A Golf Digest article about her includes a quote from her doctor saying, “people with a severe condition like hers almost always have a difficult time achieving in life. It’s no accident that through history, there are almost no famous persons known to have suffered with severe narcolepsy.”2 He goes on to praise Nicole’s personality, attitude and determination, oblivious to the possibility that Nicole might disprove his faulty assumptions about the prospects of people with narcolepsy. This doctor gives voice to a major barrier people with narcolepsy face inside and outside of work environments—negative attitudes and low expectations. These negative messages are not limited to the workplace, but they are active in shaping how people with narcolepsy come to understand work and narcolepsy.

Contrary to what the doctor quoted above claimed, there are many examples of successful and famous people with narcolepsy—or, for a more historically accurate label, people who were notably prone to irrepressible daytime sleepiness—throughout history and alive today. There are many historical figures whose proclivity for naps cause some historians to diagnose them as narcoleptic; the most notable of these are Thomas Edison,3

Winston Churchill,4 and Harriet Tubman.5 Thomas Edison turned to naps to help him figure out complex problems.6 The book, The Committee of Sleep, explores many indispensable creations and discoveries that were born during sleep, or more specifically

122 in the twilight of waking up.7 Dante Alighieri’s Divine Comedy includes complaints that resemble the symptoms of narcolepsy, suggesting that he himself had narcolepsy with cataplexy.8

Well-known people with narcolepsy who are alive today include the host of the late-night show, Jimmy Kimmel Live;9 George Church, the Harvard geneticist;10 and

Harold McEwen Ickes, White House Deputy Chief of Staff for President Bill Clinton.11

Danielle Brooks, a college student and narcolepsy advocate, created the website, www.SucceedingwithNarcolepsy.com, to highlight successful people with narcolepsy and to counter the negative and limiting messages about it she was hearing on the internet.12 While in high school, she published her story and the stories of many others who are living successful and fulfilling lives with narcolepsy.13 Julie Flygare is perhaps the most visible patient advocate. Through her book,14 her blog, her Narcolepsy Not

Alone photo campaign, her non-profit organization Project Sleep,15 and through her many opportunities to speak about narcolepsy, Julie represents the public face of narcolepsy for many—the public face of narcolepsy is very active.

Narcoleptics are educated at the rate comparable to that of non-narcoleptics and in

America they marry at comparable rates.16 To dramatize my point, I would like to point out the odds: since 1 in 2000 people have narcolepsy and America is home to over 400 billionaires, there is about a 1 in 5 chance that one of those billionaires has narcolepsy.

Despite these odds, patients and doctors, like the one mentioned above, think we all have a “difficult time achieving in life.”

123 While the anecdotal evidence above is persuasive, the skeptics, like the doctor quoted earlier, have data that support their low expectations. Indeed, people with narcolepsy are twice as likely to develop psychiatric conditions, and their utilization of medical services is many times greater than the non-narcoleptic.17 Yet, such numbers can only tell us so much about the impact of narcolepsy. In a population-wide study of narcoleptics in Italy, after researchers collected and analyzed their data, they mused that,

“It would be interesting to understand why [narcolepsy with cataplexy] had a greater impact on the social lives of patients than on their education and employment.”18 To answer this question, and my own research questions, this chapter presents a rich description of how the meaning of narcolepsy is tied to the specifics of place, personal history, and social resources.

Moving beyond the details of the pathology to reveal how narcolepsy is experienced in everyday life means recognizing how medical knowledge, representations, and attitudes are interconnected. I have experimented with the genre of qualitative and ethnographic writing to find the right voice for my participants and my role as the researcher and peer. I sought to develop an approach to writing that allowed me to approach the task of storytelling in a way that places me, the interviewer and fellow person with narcolepsy, as the conversational partner with Penny. Using the transcriptions, photographs, sensory fieldnotes, and descriptions from recordings, I recreated a rich situation where knowledge is discovered through engagement with both the context and story.

124 My discussion of the themes I identified from the interpretive phenomenological analysis unfold in the telling of the story of the interview. Embedding the meanings within a rich and embodied exchange yields accounts of narcolepsy that are always and at once bound to the specific nuances of the chimerical moment. The narrative form invites readers to discover what I and my conversational partner discovered about each other and narcolepsy by providing some of my analysis in the story. The story of the interview is in italics and is followed by a discussion of the themes and how they shed light on the research questions. The discussions also revisit other interviews to shed light on the relationship between work and place. By sharing the story of the interview, I seek to share not only the information and interpretation of the interview but I also strive to reveal how affect and sensory experiences are central to the way we come to knowledge.

z z z z z

When I rushed into Strongwater, about 10 minutes late, I smiled because I saw that this was not going to be like last month when no one showed up—several people were here already. I met Penny, Elaine, Cameron, John, Jane and Cynthia that morning.

Early in the meeting we learned that Penny, a 28-year-old White woman, is new to narcolepsy—having been diagnosed at the beginning of the year. During our meal,

Penny, introduced her husband to the group by saying, “He doesn’t think it is ‘real,’” in a cadence and tone that was upbeat. No one said anything in response as she continued to explain how he just thinks she is “lazy.” I did not detect any sour overtones that might have indicated sarcasm—I was hoping it was a joke so I scrutinized her for a cue to laugh. Perhaps it was some sort of funny joke between Penny and her husband and she

125 was letting us in on it? I checked to see how others reacted and they acted like nothing happened. I did the same. Like many African-Americans, passive aggressive behaviors often confound me. Penny was describing an experience that I am familiar with; however, her attitude and frankness was jarring because I have become used to hearing people wrestle with issues of legitimacy with despair and discontent.

I arranged to interview her at her home on Sunday. I had no idea what part of

Columbus I ended up in, but I was able to find her house without too much trouble. The stucco house is golden clay-colored with two white garage doors and a driveway that can fit about 6 or more cars. The backyard spills out from the driveway without any clear beginnings or endings between the parts of their property space and the property it buttresses. As I pulled up, I got out my pad folio and the folder that had one of every sheet I needed. I then made sure I had a writing utensil and, after turning off the GPS function instead of putting my phone away, I realized that I could take a photo of something to better recall the details of the day—I forgot to take photos before and after my first interview. This was a second chance. I shyly took a picture of the garage and the backyard, and worried that someone might be able to see me. I decided not to take a photo of the front door.

At the window-less front door, I rang the doorbell and started to wonder about what my plan was if no one answered. Thankfully that question was abandoned as soon as it was taken up when I was enthusiastically greeted by Penny as she reached for her oversized puppy, Adam. He is a golden brown Leonberger puppy and looked like he weighs around 100 pounds. He has not yet learned how to jump and just yesterday

126 learned how to stand on his hind legs to try to get to a higher space. He looks like a mini teddy bear with floppy ears and fluffy tan fur that darkens to black around the face and paws. Unlike most puppies I’ve met, this one doesn’t bark and doesn’t force himself into my space. He seems only mildly curious. Penny is dressed casually in a gray oversized t- shirt and loose cropped jersey material pants. Her dark, shoulder-length hair is down and only her eyeglasses adorn her face.

This chapter will focus on my time with Penny, who wanted to do her second interview at work so she could talk about her struggles of having narcolepsy while at work. A newly-diagnosed woman with narcolepsy with cataplexy, Penny’s diagnosis story came after previous diagnoses of ADHD, anxiety, and depression. It was the fact that she was falling asleep while on stimulants that told her doctor that she may have a sleep disorder. She is a speech pathologist at an elementary school and spent the Fall semester of the previous school year undiagnosed and struggling with narcolepsy without the help a diagnosis and treatment provides. It can take months or even years to determine the right medications and dosages to help control the symptoms, so she still experienced moments of excessive daytime sleepiness, memory problems, concentration problems and had a mild cataplectic attack after beginning treatment for her condition.

Penny’s story highlights three dimensions of experiencing narcolepsy at work: (1) the presence of onlookers should one become sleepy or take a nap, (2) the difficulty of working with sleepiness, inattention, and other impairments, and (3) the inflexible and flexible dimensions of work and its environment. Penny talked with me about several of the strategies she has for dealing with sleepiness. For Penny, work was exhausting and

127 inflexible, but she was enthusiastic in her attempts at educating those she worked with about narcolepsy and had the support of close colleagues that let her nap in their room.

This chapter also provides more glimpses into the work of doing the interviews to put the work of interviewing and the work of managing my narcolepsy in conversation with

Penny’s story of dealing with narcolepsy at work.

Penny’s Diagnosis Story

Penny walks me to the circular wood-laminate table, which I can see was just washed with a wet rag. My nose doesn’t smell the scent of cleaners although I sense that she was straightening up when I arrived. The table still looks wet, so I am reticent about sitting down just yet. I will need a dry spot for my computer, or maybe I should just use my phone. I decide to use my phone to record the interview and took a seat.

During the interview, I learn that her earlier claim from yesterday’s support group meeting—that her husband just “thinks I am lazy”—was not a joke. Still, she maintains an upbeat manner in general and seems to find it funny that the people closest to her do not take her condition seriously. It seemed she was at home alone; halfway through the interview she mentions that her husband is in the other room.

As I get out my papers, she offers me a banana and a cup of water. I decline because I just ate breakfast. Penny helps herself to a banana and water and tells me about Adam. During the interview, Penny gets up a few times to tend to the puppy who likes to put his paws in the water he is given for drinking. When that is tiresome, he dumps it out and contentedly lays in the water. I go over the informed consent form, the demographic sheet, and the contact information form and then Penny picks her

128 pseudonym, before we are ready to begin the interview. My first question for Penny and all my interviewees is, “What is your diagnosis story?” Penny’s diagnosis story starts with being treated for ADHD with stimulants and still needing naps, which told the counselor that something was wrong because Penny should not have been able to nap while taking stimulants.

Penny thought “this ADHD stuff” has been there since she was a toddler. Penny also had memory issues as a kid. She suspects that her discussions of her memory issues are what pointed her psychologist to ADHD. She explained, “I can’t remember anything.

I have never been able to remember, and my mom would yell at me and say you need to make a list. And I’d say I made a list, I forgot to look at the list.” She went on to say “I know everyone at the group said that’s all narcolepsy, but the narcolepsy stuff started later” and she also attributed the executive functioning issues she has been dealing with to ADHD, too.

I was fascinated by her story. As I listened to her, I started to suspect that, like many others with narcolepsy, she was misdiagnosed for years but at this point, about six months after the diagnosis, she did not see this prior diagnosis as a misdiagnosis.19 She then told me about how once she was on medicine for ADHD she could, “take data.” She explained, “I couldn’t take data, and the session with the kid—I couldn’t transition from one thing to the next because they’d all say, ‘Well you need to be thinking about the next thing while you’re doing this, so that your transition is better.’ I said I can’t think about the next thing while I’m doing this; if I’m not 100 percent thinking about this, then I’m not doing it.” In grad school, she learned that she couldn’t transition and had other

129 organizational issues. Yet, once put on ADHD medication, she saw improvements, which is why it seemed to be a correct diagnosis.

I saw an opportunity to help her by sharing what I learned about narcolepsy and mental fog, “I want to, um at times I’ll like share a little bit of my story so that it’s more conversational, but growing up I was ‘ditsy’. My nickname was ‘Blondie’. And before I was diagnosed, it, it there wasn’t like a reason, I was just sort of like you know, I just forgot stuff. I just like said weird things, I was just, sometimes my brain was someplace else. Or sometimes, but, but that’s okay because I was um, had better grades than all my peers and was just, they just knew I was brighter—I just wasn’t brighter all the time, right?”

At this we both laughed. We both were very bright women who excelled in school but had odd and undeniable difficulties from time to time. I went on to explain how narcolepsy is a pathology, and unfortunately the cognitive symptoms are not treated like primary symptoms even though it is a part of excessive daytime sleepiness. What many call “brain fog” gets very little attention and treatment,20 therefore it is difficult to recognize that those early symptoms may have been early signs of sleepiness and not something else.

Penny adds, “But then can you have narcolepsy since from being like a toddler all the way up, but then not the cataplexy until later? I don’t know.”

I respond by explaining, “It’s developmental and so it does progress slowly,” indicating that the onset of narcolepsy symptoms is gradual instead of being an immediate and sudden change in sleep patterns and neurological functioning. I go on to

130 add, “It’s not unreasonable to think that your experiences are um, have, have a long history even though they didn’t result in you falling asleep, because these kind of things you’re describing, that is all a part of narcolepsy.” I paused, unsure if I wanted to take this detour. Penny encouraged me to continue, so I explained how narcolepsy symptoms are moments when the brain is engaging in processes that should occur during sleep but instead are happening while we are awake.

After talking about my post-it metaphor of sleep and narcolepsy she revised her earlier understanding, noting, “So then I almost feel I should change my form, on when did it start: question mark.”

To which I say, “Okay, yeah you could do that. Here,” while reaching for the form. Penny uses the black ballpoint pen to scratch-out what she wrote and beside it she puts a question mark on the form where it asked when they started to experience symptoms.

“Because, like I don’t remember a time when I wasn’t tired.”

“Okay” I reply.

“Even like in middle school or even elementary school, I don’t remember ever not being tired.” She continues, “I guess, like the cataplexy, and the actually falling asleep didn’t start until. . .”

“More recently?” I interject.

“About 22, 23 years old.” Penny starts to think about her past through the lens of narcolepsy and begins to see it differently, realizing, “Um, although I do know that my mom says when I was like preschool, like I don’t remember it, but if I got hit, like bumped

131 my head she said I would pass out.” She is realizing that these memories of passing out could now be understood with the lens of narcolepsy and may have been cataplexy.

“Huh” I say.

She continues, “And then wake-up and be fine, so she’d have to tell people like when they’re babysitting or whatever, like if she turns and she passes out, she’s fine, don’t take her to the hospital.”

To which I could only say, “Wow!” I added that, in my preliminary research in which I did email interviews with people with narcolepsy, there were people who said they are pretty sure they had narcolepsy as a toddler. I share how my family jokes about how I was such an easy baby and toddler, because of all the sleeping I would do, that my parents thought having kids was easy so they had three more babies.

Penny adds that she has always had “really vivid dreams,” otherwise known as epic dreams. She would remember them clearly—even too clearly because, “sometimes

I’ve spent all day going, ‘That dream wasn’t real, that wasn’t a real thing.’ I feel like it gets stored in like this was a real thing that’s happened, and it’s always been like that so.” We went on to talk about deja-vu and the extra work of separating fact from fiction, since dreams can be as vivid as real life.

The confusion we discuss is referred to as dream delusions, which refers to false beliefs that can persist for days or even weeks; they point to unique memory issues in people with narcolepsy that deserve more research and attention.21 Dream delusions are different from hypnogogic hallucinations in that they occur during sleep, but something goes amiss and these dreams are remembered as a story with such detail and complexity22

132 that they may at times seem real. The language of “symptoms” does not seem to fit discussions of dreams, yet prior to a diagnosis, just six months before our conversation,

Penny had very few words to describe her falling down or her endless lack of energy. The work of learning how to speak about her body is accomplished with the help of models like the stories I offer and through practice.

The above narrative shows how many come to understand narcolepsy through memories and communication about experiences that only later come to have a name.

Before her diagnosis, her “passing out” and her tiredness were not a part of a larger physiopathology, and the language used to discuss them reflected this. Many of the conversations with my interviewees caused my interviewee or myself to revisit and revise our understandings of our bodies and our past. By sharing the interview in the form of a story, I am performatively writing and using the performance study concept of performativity. As Kristin Langlier says, “The focus on performance emphasizes the way telling intervenes between the experience and the story, the pragmatics of putting narrative into practice, and the function for participants.” I am showing both the story and the experience of the telling to show how my participants’ narratives serve both the pragmatic and functional purpose of making sense of narcolepsy.

Many of the people I have interviewed and talked with through the group were disappointed with the quality of the information their doctors provided upon diagnosis.

They felt left to make sense of narcolepsy as individuals. The group and online resources help in many ways, but twenty years into having narcolepsy I am still learning a lot of new things about it. This narrative begins with how Penny understood the relationship

133 between narcolepsy and ADHD—she thought narcolepsy came later. Upon diagnosis, many people will look at the descriptions of narcolepsy symptoms and begin to understand previously unexplained memories in terms of the narcolepsy symptoms. This process of telling a new story about one’s body occurs over time and conversations become opportunities to revisit and amend previous understandings, as Penny does here.

While Penny’s story indicates that she has always been tired and she had experiences that suggest that she might have had cataplexy as a young girl, there is no way to verify or disconfirm this story. At a later meeting, Penny told me that the question of when it started, or what came first, ultimately did not matter. Neat narratives about narcolepsy as a pathology and a subject of a research investigation fail to reveal the ways that making sense of sleep is a never-ending project for people with narcolepsy.

In the narratives of dialoging about narcolepsy I seek to present a heteroglosia of voices: the medical jargon, the ethical doctor, the willing interviewee, the pharmaceutical’s promise, the multifaceted person, the embodied interviewer, the cautious writer, the vulnerable researcher, and the nascent relationship.23 All of these voices contribute to shaping how we come to understand ourselves and narcolepsy. They are each present in each story I share about the conversations I had about narcolepsy. The meaning of narcolepsy lies in Bakhtin’s concept of dialogue and “dialogization” in which a culture becomes aware of competing definitions of the same things24. The meaning of narcolepsy shifts and transforms because as voices change the meanings change. In seeking to create an account of the meaning of narcolepsy, I wanted to avoid a monologue where I author a text that reflects a singular perspective. Rather, I wanted to

134 speak with my participants while recognizing the control I have in shaping how they are portrayed. The potential that Penny’s initial position could have been correct, and the vulnerability embodied in my suggestion that I could know her history better than she knows her history are voices in the dialogue that should be heard just as much as the other parts of the narrative.

In Paul E. Phuetze’s book on Martin Buber and Herbert Mead, he declares that, when one is faced with the mystery and uncertainty of illness and mortality, “Either we believe there is meaning in life, or we are engulfed in the tragedy of human existence.”25.

As people with narcolepsy, we are galvanized to make sense of life and illness and we do this through stories. Each chapter presents the diagnosis story of the participant, which becomes part of the context for understanding the meanings of narcolepsy for each person.

During the first interview, I also talked with Penny about seeking disability accommodations and framed this in terms of how she works with children who have disabilities, so they should be open to helping her deal with her condition. She found that working in theater as a producer was invigorating, and she does not think sleepiness got in the way of that type of work. Penny and I decided to try to do our second interview at a local University’s theater, but when this plan fell through we decided to meet at the school where Penny works.

At Work with Onlookers, Inattention, and Inflexibility

My sleepiness was not under control enough for me to plan to drive to and from

Columbus as needed for the interviews, so I spent the night in Columbus several times

135 during my research. Back home, in Athens, I was in the beginning stages of painting my bedroom a soft yellow color, which was inspired by the cheerful walls of one of the hotel rooms I stayed in during my trips to Columbus. The day I planned to interview Penny began in one of these hotel rooms. I was complimented on my outfit as I waited behind a father and daughter for the waffle maker. I had yellow pants on and a black and white striped cotton shirt and a sweater. While waiting for the chance to make a waffle, I took a picture of the fruit water the hotel made that included pineapple, lemon slices and other slices of citruses. I hoped one day I could make it. After breakfast I checked out and headed to meet Penny.

Once I realized my GPS was not helping me locate the school, I pulled into a driveway to make a U-turn. As the cop in my rear-view mirror drove by, I called the number Penny gave me. She described how to find the place, but it took a while for me to orient myself to her instructions. When I finally drove up to the nearly empty parking lot, she was standing outside. The building looked new—it could have been built in the last five or ten years. As she led me to her room I saw no one. I later learned that this was the day that teachers used to organize their rooms or get rid of old decorations and student projects. Penny’s room was just down the hall from the entrance, so I did not see much of the school.

Penny had left her oak door open, but once we entered she closed it. We sat at the trapezoid table she uses to work with students. Once I described how this interview will be different from the first interview in that it would be up to her what she wanted to share, I perched my computer on a short bookshelf that faced Penny and started the video

136 and sound recording. She had worked here for one year, and for half of this year she was undiagnosed. Meanwhile, during the second semester she was working with a doctor to figure out the right medications she could take to help manage her excessive daytime sleepiness and disrupted sleep.

In the second interview, I had better rapport with Penny, and at the end I was really happy because we had learned so much from each other. I made notes about the interview and transcribed it. I used Interpretive Phenomenological Analysis (IPA) to review the transcript to identify ideas that emerged during the interview. I turned these ideas into codes and then organized them into thematic clusters. The largest and most salient clusters became the themes I will explore in the remainder of this chapter. As mentioned before, Penny’s story highlights three dimensions of being at work with narcolepsy: (1) the presence of onlookers should one become cataplectic, sleepy or take a nap, (2) the difficulties of working with sleepiness, inattention and other impairments, and (3) the ways in which work can be inflexible in some respects while being flexible in other respects. After sharing Penny’s account of being at work, I will share some of the stories from other interviewees of working with narcolepsy and reflect on how the narrative sheds light on the research questions.

The Optics of Naps and Sleepiness

After pressing “Record,” I ask, “Tell me again, how is [narcolepsy] a part of being in this space?”

She begins by saying, “I just started here in August, so this is the first time I’ve had a job where I have to go all day, like the 9 to 5, five days a week kind of thing. And so I

137 think that’s actually been kinda difficult. This is a big jump, but,” gesturing towards the closed door that is next to her desk, “it’s a very public spot at my desk, in that there is a lot of traffic back and forth,” moving her arm left to right while pointing, “because the way to the cafeteria is out this door.” She is pointing to the right edge of the door indicating that the cafeteria is down the hall to the right. Her solid oak door has a narrow four-inch window that sits left of the door knob. The desk with her computer sits beside this door.

She continues, “And so every student in the school goes by. And the way from the dorms is—this door. So, in the morning they all come through; then they all go through for lunch, and come back from lunch; then the evening, people meet out here. It’s very public.” She is not able to take a nap in her own room—ever since I stepped into the room I was suspecting that she was able to use this private space to help manage her sleepiness with naps. It turned out to be the opposite because under no circumstances can she block the window. She discloses, “I always feel like somebody’s watching all the time.”

In response, I ask, “When did you start to feel that way? When they showed you the room, did you already know that this was going to be an issue?”

Penny talks me through her realization that onlookers are everywhere, explaining, “No, it wasn’t until I was sitting at my desk, and I laid my head down,” and she puts her head on the table to demonstrate. “And I was like, ‘Oh, man.’” Lifting her head up, “‘Oh I can’t lay my head down, I have to lift my head up’.” Then bobbing her head as if she was wrestling with sleepiness, she adds, “‘Oh, they’re all coming back from lunch now, I have to be awake and doing things.’” Although she can’t nap in her

138 office, she has a friend whose room has giant floor pillows. When Penny needs a nap, she goes to her friend’s room to sneak in a quick nap.

Relived that she has this type of resource, I ask, “But you still live with fear; it’s usually all it takes?”

She explains, “Yeah; it’s the fear of it. Oh my God, they’re all gonna think I’m sleeping on the job. Afternoons get really tough.” Penny goes on to explain how if she gets to school late, not only does the teacher and student first on her schedule know, but,

“Everybody knows when I’m late; if I get here late. All the kids are like already starting to come in, I’m like, ‘Excuse me; unlocking my door.’” Indicating how she would have to squeeze past a line of students parked outside her door.

I empathized with her by adding, “It’s like checking in; like when you get to work, some people—the manager will see you, right? So, there’s no way of sneaking in. But for you it’s not a manager, it’s just like, everybody.”

“Everybody knows; I’m late. Everyday. Except today! I was early. I think like all year I’ve been late; today there’s no students and I’m early. It’s like, really?” For Penny and for many people with narcolepsy waking up in the morning is difficult because spending even a moment in bed can cause them to slip into deep sleep. When I was in college I wrote on a sheet of paper Nike’s slogan, “Just do it,” to remind me to hurry to get out of bed when I woke up or else risk losing hours to the quicksand of narcolepsy.

This quicksand makes waking up tricky and can cause drowsiness, lethargy and tiredness—leading some people to hope that five more minutes might remove these feelings and replace them with what waking up is supposed to be like. I told Penny about

139 the sign and how I have a cat that is my trustworthy alarm clock because she will not stop meowing and pawing at me until I get up and feed her in the morning. If I get back in bed after feeding her, it is just a matter of time before she would start to try to rouse me again. When I asked about what happens in the mornings, Penny explained that after turning off the alarm, she immediately falls asleep and her dreams keep going like they never stopped. She has learned to avoid morning commitments since she is likely going to miss them. For Penny, being someone with narcolepsy at work means being surrounded by people who may become onlookers and witnesses if she were to suddenly fall asleep or experience cataplexy.

These onlookers may take a more active role. Many people find humor in the cataplexy response of people with narcolepsy. In response to a question about whether she still experiences cataplexy, Penny explains that most of her cataplexy is under control because of the Zoloft her doctor prescribed before her diagnosis. She adds that she still has what she calls a “micro sort of cataplexy.”

She goes on to describe, “A student startled me the other day and I dropped—I was eating and I dropped my food and they thought it was hysterical.” Penny shows how slight the cataplectic response was by bringing her hands up and weakening her grasp of an imaginary sandwich while continuing to say, “Then she kept trying to startle me and I had to be like ‘no’, like ‘you have to stop’. They’re like, ‘Ha, ha, ha’, like ‘oh Rebecca, scare her and she dropped her food, oh my gosh.’ I’m like, ‘No. No this is not a thing.

You are not all going to try to jump out at me now. We’re finished.’”

140 Shocked I say, “So crazy!” Her description suggests that the student didn’t take her request seriously because she kept trying to scare her, yet she seems more annoyed than angry. I note, “It sounds like you have a good attitude about the whole thing.” This might be an example of the emotional restraint people with narcolepsy with cataplexy develop to ward off the emotions that invite cataplexy.

“I kept telling her ‘no’, like ‘that’s it’. She scared me like three times in one day, and I finally had to be like, ‘If you do that again you’ll get lunch detention… You’re done’.” She was annoyed that this student didn’t understand. Penny adds that she is glad that her trigger is being startled because falling down is an acceptable reaction to being surprised. The sight of seeing someone fall, drop something, or lose their balance upon being startled doesn’t attract the same type of onlookers that falling because of different triggers does. This trigger may be contributing to her husband’s inability to understand her falls as cataplexy and therefore indicating a pathological condition.

To summarize, Penny’s experience of being at work with narcolepsy accompanies feelings of surveillance even when she has more privacy than most teachers. Students and teachers are also able to see her tardiness and when she falls behind her schedule.

The narrative form unfolds and as it does Penny’s understanding of narcolepsy begins to surface. Mornings at work are precarious because of the way narcolepsy delays transitioning to wakefulness. Penny’s chronotype and the schedule of schools who teach young children is a significant misfit, but Penny is optimistic about her ability to do better. Prior to starting this job, as a graduate student, the inconsistent schedule may have made it harder to see the type of clear pattern that emerged when she had to be at the

141 same place at the same time for five days a week. In one of her interviews with me, another participant, Nancy, discussed how she was a speech pathologist when she was diagnosed with narcolepsy, but she was eventually fired from that job, which is how she started to work with libraries. While Nancy spent a lot of time working as a librarian, her diagnosis was the beginning of a number of job changes. As she put it, “Once I retired, then I started doing different kinds of volunteer work, volunteering in school libraries and some other places, too. Some of those were a much better fit for me, partly because it was a shorter period of time.” The challenge for people with narcolepsy, and for others who might identify as being neurodiverse, is finding the right niche26 where their weaknesses can be balanced with opportunities to build and strengthen their assets and talents. Nancy discovered her niche when she retired, and Penny is at the beginning of her journey with narcolepsy and is optimistic about her ability to find a niche in speech pathology.

The story of a student discovering her cataplexy trigger and then proceeding to try to scare her again to get a laugh illustrates one of the ways that Penny’s vulnerability is visceral. Not only is Penny’s sleepiness and tardiness on display, but while her cataplexy is largely controlled by the Zoloft she takes, it can still happen on a smaller scale. While

Penny was able to eventually put an end to attempts to startle her, the story is a glimpse into how even the most mundane days and places can suddenly transform into a situation that makes it difficult for someone like Penny. The ongoing visibility of sleepiness and cataplexy means that for Penny, at school, hiding this aspect of her body is an ongoing project.

142 The Flexibility and Inflexibility of Space and Time

Despite the inflexibility of the schedule, there are ways that Penny’s needs and the expectations of the job are in alignment. Early in the interview I asked, “Has anybody seen you trying to take a nap, or that moment when you put your head down, did somebody react?”

“No. If I’m taking a nap, I go to my friend’s room down the hall, because she has big pillows. So after school sometimes I’ll go down and take a nap in her room.”

“That’s…” I struggle to find the right word, “awesome.”

Penny adds, “I need pillows for here. But no, nobody’s ever said anything, so that’s good.” Sometimes she doesn’t need a nap, but instead can just close her eyes for a few moments, and after that she feels better. Later she described in detail all of the changes to the room she has made since she started at the beginning of the semester.

Most of the changes reflect an effort to declutter the room and minimize distractions.

I asked, “Does it feel different when you are here with somebody versus here by yourself?”

Penny nodded her head indicating yes while yawning widely before saying, “Yes it does. I tend to stay later than a lot of people and I do like that. When it is quiet—when it is just me. Cause then I can just take my shoes off or play music or things like that and relax instead of having to be ‘on’ all the time.” The room is a hideaway where she can sit with her feet on the table with her shoes off when she is alone.

And when it is not empty, the room means something very different to her and her friends, “Then it is also is nice when my friends—a lot of the time people will end up

143 gathering in here.” To illustrate, she added, “because it is so like ‘Oh, I was just walking to my classroom and look everyone is just sitting here so I’ll join too.’ So, everyone is sitting here and chats away. That’s fun. And, I can sit in my comfy chair and just be there—not have to participate. I’m going to be tired over here” as she gestures to an imaginary group of friends and telling them, “‘You all do that thing’. I still get to be involved but I don’t have to do anything to be involved.” Her office is a coveted space in the era of open classroom spaces where few teachers in new buildings have a space they can fill with peers or with anything else since most classrooms do not have walls and doors. Penny’s room, with a paucity of student seating since she sees students one at a time, has many places for both big and small people to sit.

What I love about this story is the way the space allows her to be involved and included by proximity and ownership. Her contribution to gatherings can be passive, and this mode of engaging with peers allows her to shift from alert to sleepy without compromising her ability to belong and feel included. This aspect of her story fits with the needs of people with narcolepsy. It also illustrates a goal for employers and managers who work with people who have narcolepsy, which is to enable passive and active ways of creating value and productivity. When people with narcolepsy are sleepy, they need to be able to switch to the tasks that require less accuracy and attention to detail; and when they are alert they should be able to engage in the activities that require that mindset.

There are aspects of Penny’s job and space that fit her needs as a person with narcolepsy, and there are aspects of teaching that are less flexible. Instead of attempting to evaluate traits and label them as flexible or inflexible, which are relative terms, I

144 looked at the ways Penny dealt with teaching in terms of congruence and incongruence.

An example of an inflexibility and incongruence is Penny’s proclivity for walking around her office without shoes and socks. When she goes outside of her office like this, it solicits attention. This is a benign example of a misfit, or when the wants and needs of a body do not match what a context will provide. This story will discuss some of the ways her narcolepsy exists in a context that does not provide opportunities for adaptation or accommodation while also reflecting on the ways Penny has been able to make her space and her narcolepsy fit each other.

Many aspects of Penny’s work environment are incongruent with the needs of a person with narcolepsy. As described above, when people pass her window, students, teachers and administrators, all expect to see her and, as Penny put it, “I have to be awake and doing things.” Each moment of her day should be filled with specific activities that she should able to perform at the specified time. Like her tardiness, when she gets off schedule, everyone knows about it. The service she provides is legally mandated, so to get behind schedule, perhaps to finish a lesson or because of a mistake, affects her ability to meet the specified time commitment for other students. As she puts it, “I have to see them for that number of minutes” even if she is tired or in need of a nap or a walk. The schedule demands of working at an elementary school are also difficult because of the need to drive early in the morning.

Everyone occasionally will get behind, be late, or make mistakes, but it would be a mistake to think of her mistakes are things everyone deals with. Not only does this perspective undermine the impact of the disability, but in failing to see the problem,

145 people may also fail to find a solution for Penny in the form of accommodations, help, or schedule changes. During my first interview with Penny, we talked about what she did before deciding to return to school to become a speech pathologist. When reflecting on the difference between working at a theater company and what she does now, the inflexibility of her schedule is a major issue. She observed, “if [I] needed something that was up and active, I would pick that thing off the to-do list. If I wanted to sit and work on something, whereas now I’ve got to be there by 7:30, and the whole day is scheduled out, and I have to follow that schedule and it’s bam, bam, bam, bam all day long and it is exhausting.” The rigid schedule of being a teacher does not fit well with a condition that changes her state of alertness from moment to moment.

However, it would be simplistic to suggest that strict scheduling and narcolepsy are incompatible. Rather, the uncertainty around performance, her unfamiliarity with narcolepsy and issues of accommodation, her probationary status as a new hire right out of graduate school, all create a context where narcolepsy may potentially mean the end of a career that just began. While I certainly hope that this is the least likely way Penny’s story will unfold, this picture is clear. For example, another participant, Levi, found that working part time, four days a week instead of five, was a manageable way to have narcolepsy and a career in computer science. Sable, on the other hand, found that narcolepsy changed her dreams and her personality. After being awarded disability retirement, Sable tried to pursue her dream of becoming a park ranger by taking jobs that let her work outside. As she told me about this she recalled, “Almost every other job— except for when I was a kid—before the federal government, almost every other job, I’ve

146 been fired it seems like. And it’s saddening. It takes you down.” For people like Sable and Jane, who are both either disability retirement of Social Security Disability, narcolepsy and full time employment were incommensurable.

Inattention, Delays, and Mistakes

The symptoms of narcolepsy are easy to read about and known in an abstract sense, but from the person’s perspective, knowing about sleepiness is not so simple. As

Penny and I continued to talk, she explained how one day she had a “narcolepsy type day” in which, “I could barely function I was so tired—falling asleep. If I feel like that’s what’s causing the issue then yeah. But it doesn’t always connect for me. I think sometimes things happen and I’m having a whatever and it doesn’t connect,” moving her hands rapidly around in front of her face indicating confusion.

I ask, “Hindsight?”

“Yeah. Looking back I guess that was really connected with that although it was sort of,” using her hands to signal a single contained situation.

I chime in to tell her about a little error I made in writing an email that haunted me. Later, I wrote a poem about it.27 Penny explains how she simply failed to notice that her license was expired. Then she explains how she made a little mistake on a student’s report that had big consequences, “We were writing progress report data and I completely missed an entire goal for a kid. Completely missed it. And so they were like, ‘I go through and write-out a list of the entire goals’, ‘I did that’. They’re like, ‘I do this and this and that’s how I don’t.’ I was like, ‘No, I did all those things. I did everything

147 everyone else is doing. I checked off all the goals and I completely missed that one. Like I have not touched it. I’m sorry.’ Oh my god!” At this she laughs lightly.

I pause before adding, “These little mistakes. They don’t seem so little when they happen. Like, ‘I know I was supposed to do this, but for some reason it wasn’t working’.”

To finish my initial thought Penny adds, “They have big consequences.”

Earlier in the interview I asked about a specific example of how narcolepsy affected her work. She started by sharing that the kids don’t notice it, but, “There are definitely times when I get to the end of a session and I have no clue what happened in that session because I was mostly asleep for it, and I was sitting there trying to hide the yawn the whole time. I’m trying to be excited about what I’m doing, but really I’m like,

‘What’s he doing, what’s he doing, great, we’re done!’ And then I feel bad because they’re not getting what they need, or what they deserve.” Penny goes on to say how she is always trying to balance her tiredness with making sure she gives them good services.

For example, if she is not functioning well and is late with finishing one student, then it might not be worth going to get the next one if she is not going to do a good job at squeezing his lesson into a smaller spot. When Penny is struggling with sleepiness she has trouble focusing her eyes because she is so tired.

Inattention is a part of excessive daytime sleepiness, so a person with narcolepsy can feel perfectly awake but still be prone to making mistakes. The moments of not being able to “take data” that Penny discussed at the beginning of her first interview is an example of inattentional blindness that is caused by narcolepsy. In addition to inattention

148 there is also a tendency towards hyperactivity in that people with narcolepsy can be prone to moving on to another task before completing the first one.

As I talk about this, Penny chimes in saying that she has a great example of this aspect of narcolepsy, “Until I started medication, I couldn’t make bacon because it was just long enough for me to get bored and walk away. And then I’d burn it because I’d forget about it. So, I couldn’t make it.”

She pauses before continuing, “So then I started medication and one day I actually made bacon and I didn’t burn it; I was like, ‘Oh, my God. I made the bacon.’ I did it right! its edible.’ It was always like I would sit there flipping it and flipping it and the next thing you know I’m like ‘What is that smell? Oh my god! The bacon!’ as I’m half-way across the house doing something else because I just couldn’t attend to the bacon. People are like, ‘It takes two to three minutes’ I’m like ‘I can’t sit there for three minutes.’” Penny is grinning widely and we both start to laugh at the story in a way that shows how we both feel the same way about the story.

While laughing I say, “That is true. I love that story because yeah, that’s the kind of thing that people totally take for granted. Thinking it’s easy, ‘everybody can do it,’ but when your brain has something else in mind. Maybe it’s not too easy when that happens.” To help with issues of inattention, I rely on my Apple Watch to help me remember things big and small. Once I’ve showed her my little helper, she pulls out something that looks like a stop light from behind her computer.

With a teacher’s cadence she explains, “That’s why I got this wonderful timer that I set for twenty minutes because I have twenty minute sessions. It’s fifteen minutes on

149 green and then switches to yellow for three minutes. And then read for two minutes”(See

Figure 2).

I am so impressed that all I can say is, “That’s so cool!”

“I go, ‘Okay, this is for the kid so they know.’”

We both break out in laughs and I clap in delight.

She continues by adding, “that we work while it’s green. And we play when it’s yellow and pick up when it’s red. It’s not for the kids. It’s so I know, ‘Oh, twenty minutes is up now,’ because keeping track of the time was too difficult.” At this she laughs at herself.

I gush, “That is so brilliant. I love that.” Then I explain how I have had difficulty breaking up college classes into smaller chunks because of an inability to feel time. Not feeling time is the consequence of experiencing inattention where in the center of our focus is the only thing our brains are processing. In short, I would have to devote a significant part of my mental attention to thinking about time because of the inattention I experienced because of narcolepsy.

She reiterates, “that we work while it’s green. And we play when it’s yellow and pick up when it’s red. It’s not for the kids. It’s so I know, ‘Oh twenty minutes is up now’ because keeping track of the time was too difficult.”

Referring to my Apple Watch, I suggest that I might be able to get it to help me with feeling time.

150

Figure 2. Penny uses the Learning Resource Timer to manage her time with students and to keep track of time.

Penny adds, “I’ve even set this for if I need to make sure I go home on time.

Because I get lost in things.”

“Exactly, you are totally not alone there.”

The idea that someone might not “feel time” was something that I experienced regularly, and it is an example of a non-experience that comes to have a name and meaning when in conversation with others who are wrestling with the same problems. I was invigorated by this part of our conversation. Over the next few days I told many people, including my advisor, about the timer and the discovery of this way to talk about my inability to feel time. I quickly learned how to silence my watch and have since used it several times to help me feel time—through the haptic pulses it makes when an alarm goes off. Since this conversation, I have used this language to discuss and think about what my brain is able to do and what it at times is unable to do. Together we created or discovered a phrase and it is an artifact we share as people who needed words to discuss the experiences of having narcolepsy. 151 Both Penny and I worked in environments that encouraged or required us to break every encounter with students into smaller components and to be able to do this temporal arithmetic with little or no effort. “Not being able to feel time” also marks our brains as neurodiverse by not moralizing the trait the way that phrases like “loses track of time” or

“flow” create negative and positive intonations. This conversation moves past the exchange of messages and transforms possibilities because we have created something together and the thing we have created has a substance that the other messages lack.

In addition to experiencing issues with inattention, inattentional blindness and memory problems are a part of excessive daytime sleepiness. In Consciousness and the

Brain, Stanislas Dehaene introduces the concept of inattentional blindness by describing how, “Avid readers, concentrated chess players, and focused mathematicians know all too well that intellectual absorption can create long periods of mental isolation, during which we lose all awareness of our surroundings.”28 He then goes on describe Dan

Simons and Christopher Charis’s experiment known as “the invisible gorilla,”29 which is a film that features two teams practicing basketball. When viewers are asked to keep their eyes on one team they are often oblivious to the gorillas that come into the room. This act of focusing causes the person in a gorilla costume in the center of the film to vanish.

There are invisible gorillas littered throughout the day of someone experiencing excessive daytime sleepiness. Penny’s account of not being able to “take data” refers to how when she is teaching a lesson she should be able to make note of whether the student is listening and responding to her explanations in a way that shows they understand or are confused. She was not able to collect this type of data because it was the invisible gorilla

152 and her brain was focused on delivering content. I recognized what she was describing because it is what used to happen when I taught. It is as if my brain stops processing the visual data of the classroom because it is focusing on the content. Not being able to check to see if students are bored, are not taking notes, are disinterested or are distracted was a big issue that I was completely unaware of until I heard her put it into language. Once I was give the concept during my interview with Penny, these non-experiences became a thing that I could address.

Since then, I have continued to mold my description of inattentional blindness and now use a metaphor to describe it. Many people are familiar with the idea that phone numbers have seven digits because it was believed that people can remember up to seven pieces of information at a single moment. The actual way attention and memory works is significantly more complicated, but for the sake of the metaphor we will use the number seven. Now to visualize this concept, imagine that we have seven TV screens in our brains—each one represents a piece of information that a brain can process at a given moment. Line them up like the rows of TVs we see in stores where they are for sale. At any given moment, for most people there are different things on each screen. For example, one screen is on grammar, one on the main idea, one is on typing, another on time, and so on. Inattention means not having seven screens but instead having three or four screens. Fewer screens means someone is making decisions based on less information and engaging fewer tasks in everyday life. It means, while typing an email, losing track of the beginning of the sentence by the time you get to the end of it because there were not enough screens to remember it.

153 To elaborate on this idea, I will offer a phenomenological description of what it means to be an instructor with, inattentional blindness and other cognitive deficits caused by excessive daytime sleepiness and disrupted sleep. In short, it means that there are not enough screens for reading the classroom and tracking time while delivering content. For me, it meant that there were only enough screens for speaking, notes, and maybe transitions to the next slide or question. There is no room for things like student faces, student body language, my posture, my body language, and voice, no room to think about time. These things are there in the room pushing into my body but my brain would need to empty one of the screens to put something else on it. There is only what is right in front of me. I stop and ask a lot of questions because only then was I able to look around and see who looks like they know, who is zoned out, who is taking notes. If a student raises a hand I see it, or so I think I do. It enters my sphere of awareness but so much stays outside of it. Sometimes even these screens are nowhere to be found, leaving me stumbling through a sentence or unable to utilize my notes.

After a lecture, I was able to see students and note what I see. I was thirsty for feedback from students because I could not collect the visual feedback they provided every class. I suspected something was going on, but having Penny’s term and her account of it did not indicate how big of a problem I had. It is only now that I have better medicine and am not dealing with executive dysfunction from sleepiness and disrupted sleep, I can see what I was missing. I had to be able to see my students react to what I said, or “take data,” to know that in the past this type of information was missing. I literally had to become more alert to become cognizant of the many gorillas in my

154 classroom. Again, this is an extreme version of what happens to everyone in any given moment. At any time, there are a number of things that remain outside of our sphere of awareness until they are called upon or are felt. The feel of our clothes on our skin enters our perception in this way, and unless we think of it the sensation stays below our conscious awareness. Inattention is a circumscription of what is perceivable.

Inattentional blindness is not all big scary animals, collegiate or costumed. From the perspective of neurodiversity, it is also an asset. I attribute part of my insatiable appetite for books, paper and audio, to my enhanced capacity to be immersed into the world of the author. Doing long stretches of reading and writing is also amicable to inattentional blindness that makes distractions and restlessness less likely. The benefits are that when you only have 4 or 3 screens you pay more attention to those fewer screens.

Their details and nuances are more apparent and they offer a richer sense of understanding. Penny’s experience of mistakes and inattention were addressed by identifying what her brain was having difficulty doing and then finding a way to compensate for it.

Several participants admitted to having similar issues with concentration, performance, and memory while working. John, for example said that he decided to try

Sodium oxybate (Xyrem) because:

My life was falling apart about to lose – I could have potentially lost my job

because I really couldn’t focus at all. I was all over the place every day. I’d sit in

my office reading through Google News articles and jumping from anything on

the internet that looked interesting and then doing work.

155 However, it took three years to find the right balance between the Sodium oxybate

(Xyrem), his sleep apnea treatment, and the right stimulant. He noticed how certain stimulants would turn him into a monotone speaker, and as a person that does a lot of speaking as a self-employed director of an addiction treatment center, he needed to be an effective public speaker. When people with narcolepsy get together there tends to be a lot of talk about medications, and this was something I did not understand until this project.

Medication talk, like talk about symptoms, is a way of bridging the individual meaning the medication has for the individual with the role it plays in the lives of others.

Medication changes and adjustments are major fixtures in the landscape of people with narcolepsy, and it is only with the help of medication are they able to maintain and excel at work. The need to talk about this part of narcolepsy is only shared by people who have gone through or are in the middle of the search to find the right drugs to let them be their best selves. Prior to embarking on my journey to find the right combination of medicine,

I did not understand why so much of the talk on support group pages and forums was about medication. Medication is the key to passing as not disabled in a world where few people understand what narcolepsy means much less tolerate naps at work.

Penny found support in the friendship of a person who lets her nap in a room that doesn’t broadcast her sleep to the school. She also found it in the way her room facilitated a way to be a part of socializing without having to do the socializing. We talked at length about the issue of accommodations. Since she is in the beginning stages of treatment she is unsure what to ask for and doesn’t know what type of help she may need once the medicine is optimized. I encouraged her to talk to fellow teachers who

156 have received accommodations to learn about how it works and what resources or options they have. I shared how I happily embraced using technology to help with the way inattention, distractibility, and sleepiness can affect reading and writing by getting a computer that will read nearly anything to me. I have even graded papers having the computer read them aloud while I followed with the hard copy. I approach the task of work recognizing that my level of alertness could be at the required level, but if it is not I like to have options that will help mitigate the effects of sleepiness.

Conclusion

This chapter highlights the juxtaposition of the crucial life-sustaining activity of work and a condition that interferes with a person’s capacity to stay awake during the day. For some, these two aspects of everyday life constantly conflict while others have more amicable employers or manageable symptoms. In addition to sharing the stories of those persons I have interviewed, I have also shared insights into my own lived experiences of working with narcolepsy. Accordingly, personal head notes and archival materials have been interwoven here to illustrate the work of writing, researching, interviewing and teaching while managing a condition that is characterized by numerous unscheduled romps in la la land or what is otherwise known as excessive daytime sleepiness.

To grapple with the oxymoronic concept of working while sleepy or while allowing for naps and breaks, we should first discuss the way people with narcolepsy must do more to do less. By doing more to do less I am referring to the extra work of managing narcolepsy that occurs at home and at work that nevertheless recognizes the

157 inevitability of sleepiness, inefficiency, and errors. This leads to more work in the form of checking one’s work or allowing for more time and putting in more effort in general.

This extra time spent working may or may not be compensated. There are other ways people with narcolepsy manage to be productive and valued employees, as the story of

Grouse describes.

Grouse, who is a librarian at a Columbus area university, describes this practice of making time for narcolepsy when he states, “It can be things sort of like the feast and famine phenomena where there are stretches where I lag and struggle and just can’t focus and just can’t get stuff done, and then there are stretches where I can sort of buckle down and go like gangbusters for a while and sort of make it up. There are episodes during the year where I have to do certain things during the period of the year, like the spring, managing budgets and things like that where I have to do it. I just have to force myself to do it. I just have to like brut, brut, you know.”

I offer, “yeah, force.”

He clarifies, “determination to do it.” And goes on to say, “To do certain things but there are other times where I slack off so it evens out. It evens out but it is very inconsistent, very up and down.” I like this description, feast and famine, because that fits some of my patterns.

Penny’s story highlights how she was given a rigid schedule with every moment of her day planned out, but little by little she changed this schedule and the expectation that she will operate in predictable manner. She related, “I feel like all the teachers have learned that I don’t follow my schedule, and they finally just like accept that I send them

158 the schedule and that’s not like, like I don’t even look at it anymore.” She went on to explain how they know that the schedule is really more of a wish list than a plan, “We all know like I’m not following it.” The inflexibility of the schedule Penny must provide to teachers is balanced out by the way people are willing to change their expectations. Like

Penny’s co-workers, changing preconceptions about sleep and productivity is key to understanding and appreciating people with narcolepsy as productive people who have valuable contributions to make.

Penny is reticent about requesting accommodations, especially since she is still learning what narcolepsy means to her and her career. All but three of my interviewees were employed, and each of them were equally committed to working. While the issue of

Social Security Disability came up occasionally in my interviews, it was not something that any of the interviewees seemed interested in. All were making sacrifices to improve their performance at work and saw how narcolepsy was affecting their ability to meet expectations in terms of performance and tardiness. Some of my interviewees shared their condition with their employer and had supportive resources that allowed for naps during the day, while others did not tell employers or were self-employed. Family life, home, friendships, hobbies, entertainment, and fitness were often abandoned or minimized because of the sense that alertness and energy should be reserved for their jobs. For many of the people I interviewed, work became life to the detriment of family, friends, hobbies and other fulfilling activities. The exceptions to this were Levi and

Aurora. Penny described how she could not invite a friend over that was a very neat person because of how many chores are left undone at home. Work is perceived as being

159 worth all the sacrifices she makes to ensure she has energy for it and does her very best.

The configuration of my life also attests to the lengths people will go to continue working allowing it to cut out other parts of life until nothing else exists. Grouse, for example, describes himself as “extremely socially isolated.” And in listening to his story this was never something he pursued, rather it was forced upon him by the overwhelming experience of exhaustion that accompanied efforts to socialize at work-related social events. Many people with narcolepsy pour themselves into work, and the sad thing about it is that no one ever notices.

There are three types of narcoleptic employees: the undiagnosed narcoleptics, the ones that have most symptoms under control, and those who are still working with doctors to find the right medications for their condition. While Penny’s story includes accounts from her undiagnosed status, for the most part I am concerned with the latter two types of employees with narcolepsy. Employers and educators should be aware that the period of working to find the right medicine can take a year or several years, during which performance with be affected by excessive daytime sleepiness and other symptoms. They will likely put a great deal of energy and effort into doing the best they can and still fall short - all while developing grit and a habit of working harder than their peers. Even so, these traits eventually will make them an asset once the condition is better managed. In short, while the errors and mistakes need not be tolerated, they can be easily accommodated by providing extra time and extra flexibility. This is the ideal scenario for people who are diagnosed with narcolepsy. And while of my interviewees Elaine most experienced this type of unequivocal support and accommodation from her employer, the

160 rest of my interviewees and myself face very different attitudes about narcolepsy and accommodation measures that are less than ideal.

In writing about the productivity of people with narcolepsy, I must look directly upon the ugly fragility of human understanding. Many people labor to create a sense of reality in which being wrong is a trait of Others, enemies, and the evil—certainly not a personal trait. Our current government officials are examples of this tendency to disown the possibility of being wrong. However, history attests to all the things people were wrong about, while keeping the evanescent world that nurtured these wrong ideas safely tucked away and out of sight. This orientation towards the past allows us to embrace today naively oblivious to the innumerous ways in which everything is always crushingly wrong, and as time moves forward the world over will someday spend its evenings being amused by the beautiful wrongness of today. This anarchistic and nihilistic declaration is a prelude to acknowledging the unequivocal wrongness of how narcolepsy is often viewed by others. Yet, as a person living with narcolepsy and studying it, the chimerical nature of its wrongness galvanizes me to chase it.

For the moment, let us put aside the amoral lenses of disability studies and physiopathology to establish what is wrong with narcolepsy. Is it simply a breach in social norms and expectations, as Wolf-Meyer suggests?30 For the sake of debate, let us suppose that it is a riddle: there is everything wrong with narcolepsy and yet nothing is wrong with those who live with it. Is it the sleep or the social absence that debases their a position as people who are capable of error? Is it the way the perceptual wall of sleep intrudes while participating in an exchange of employer and employee, between teacher

161 and student? While the exact nature of the breach may be chimerical the material consequences of having narcolepsy are less obscure. For Penny and others, their errors and mistakes are a clear demonstration of what the world disapproves of. At the center of understanding the narcoleptic in a place that resists them is this struggle to reconcile the value-producing activity of work and the value-draining persistence of unawareness.

Most people, that is people without narcolepsy, idiopathic hypersomnia or similar disorders, will experience sleep and wakefulness in a way that allows them to construct unawareness, ignorance, and error in criminal terms that easily moralize the experience of narcolepsy. The task of this chapter, and the task of the dissertation, is to reveal how, for people with narcolepsy, value and unawareness coexist in everyday negotiations and can be seen in narratives of the unending work of living in a world that is organized around the idea that the two are incommensurable. How can a person go moment to moment sliding into and out of sleep and sleepiness all the while caring for children, working, driving, loving, and celebrating life? What keeps them from falling into a hole within themselves, and what things reach into that hole time and again to pull them out? This is the fundamental tension that this research attends to, and by attending to it aspires to enlighten those who might otherwise misunderstand or erase narcoleptics.

Let me now update the idea that there is something wrong with narcolepsy or narcoleptics by instead framing narcolepsy as a type of neurodiversity. To approach narcolepsy as a neurodiversity means that instead of focusing on the deficits people experience, we instead recognize the different way their brain functions and acknowledge both strengths and weaknesses. By describing the subjective experience of someone who

162 will drift between different states of alertness and sleepiness throughout the day, I am describing this difference to help people see both the novelty and the horror. Medicine has a big role to play in helping people with narcolepsy manage their sleep and alertness, but it by no means is able excise the symptoms of narcolepsy with surgical precision.

People with narcolepsy may experience sleep and wakefulness in terms that are vastly different from people without the condition. One of the first major obstacles for people with narcolepsy involves the challenges around communicating about the condition and about what it means. Some people, like John, give up on talking about narcolepsy to his family members; others, like Penny, celebrate the hard-won recognition of the physiological experience of narcolepsy. Months after our interview I learned from

Penny that once her medicine started to improve her level of energy, her husband started to recognize the validity of her condition. A year after our interview Penny explained that her husband not only changed, but he apologized for having called her “lazy.” He now comes to her defense quickly when he thinks that Penny is being too hard on herself.

Describing narcolepsy as a neurodiversity means recognizing that people with narcolepsy are different from many people in fundamental ways. One of the benefits of the neurodiversity framework is it reduces the need to understand the pathophysiology of narcolepsy and lets me and others focus on everyday issues of strategy and techniques.

For Penny and the others I have interviewed, much of the work of managing narcolepsy is left to the individual. Consequently, this work is hidden and remains unacknowledged and there are only few people they can talk to. The next chapter examines what narcolepsy may come to mean at home.

163 Chapter 5 Notes

1 Scheiber, “Fake Cover Letters Expose Discrimination Against Disabled.” 2 Diaz, “A Dream and A Nightmare.” 3 Opie, “Naps for Invention,” 81. 4 Haltom, “A Supreme Nap.,” 40; Brody, “America’s Falling Asleep.” 5 Crewe, “Harriet Tubman’s Last Work,” 229. 6 Opie, “Naps for Invention,” 81. 7 Barrett, The Committee of Sleep, 169–70. 8 Plazzi, “Dante’s Description of Narcolepsy,” 1221. 9 Gross and Kimmel, “Jimmy Kimmel on Dealing with Narcolepsy.” 10 Guturu et al., “Erosion of Conserved Binding Sites in Personal Genomes Points to Medical Histories”; Herper, “Going To Church.” 11 Lewis, “Bill Clinton’s Garbage Man,” 58. 12 Brooks, “Succeeding with Narcolepsy.” 13 Ibid. 14 Flygare, Wide Awake and Dreaming, 144. 15 Project Sleep, “Narcolepsy: Not Alone.” 16 Flores et al., “The Humanistic and Economic Burden of Narcolepsy.,” 401; Black et al., “The Burden of Narcolepsy Disease (BOND) Study,” 522; Cohen and Mudro, “Social Distance from Persons with Narcolepsy and Other Conditions,” 61. 17 Black et al., “The Burden of Narcolepsy Disease (BOND) Study,” 522. 18 Ingravallo et al., “The Burden of Narcolepsy with Cataplexy: How Disease History and Clinical Features Influence Socio-Economic Outcomes.,” 1298. 19 Kryger, Walld, and Manfreda, “Diagnoses Received by Narcolepsy Patients in the Year Prior to Diagnosis by a Sleep Specialist,” 36. 20 Flygare, “Watch Now”; Young, “Transcript of FDA Narcolepsy Public Meeting on Patient-Focused Drug Development”; “The Voice of the Patient: Narcolepsy.” The 2013 21 Wamsley et al., “Delusional Confusion of Dreaming and Reality in Narcolepsy.,” 419. 22 Mazzetti et al., “REM-Dreams Recall in Patients with Narcolepsy-Cataplexy. [Absract],” 133. 23 Bakhtin, The Dialogic Imagination, 428. 24 Ibid., 427. 25 Pfuetze, Self, Society, Existence : Human Nature and Dialogue in the Thought of George Herbert Mead and Martin Buber, 285–86. 26 Armstrong, Neurodiversity, 16–23. 27 Eugene, “(Un)becoming Mistakes [Poem],” 78. 28 Dehaene, Consciousness and the Brain, 34. 29 Simons and Charis, “The Invisible Gorilla: And Other Ways Our Intuitions Deceive Us.” Their website includes the original video and demonstrations, other videos from their research and information about their book. Simons and Charis refers to the behavior

164

as selective attention instead of inattentional blindness. Both terms have troubling implications in discussions of disability. 30 Wolf-Meyer, The Slumbering Masses, 255.

165 Chapter 6: At Home with Narcolepsy

Figure 3. A picture of the road taken while driving to Elaine’s home located in an isolated area outside of Columbus. Picture shows a strait flat country road on a cloudy but bright day.

My directions take me into a rural area where I am driving down a type of road whose unfamiliarity eluded me at first—unlike the hilly roads that wind up and down the college town of Athens, this road runs straight for miles (See Figure 3). This flat

Midwestern road is surrounded by fields of green grass and green trees. I look around to see if someone might see me before reaching for my iPhone to take a picture. Balancing the phone over the steering wheel, the camera captures this empty straight road while also capturing a piece of what I felt when I first saw it.

About five minutes later, I park outside of a grayish colonial style two-story house painted a silvery gray with white trim. Across the street from the house are acres of

166 golden grass and another long straight road that flows into a lush green horizon. A little boy meets me at the door and his mom encourages him to show me the way through the house. Elaine is holding a baby not too far behind him. On the inside, I see and smell the mahogany accents of the recently renovated home. She tells me that they were trying to put something together. My interest peeks when I see that it is something familiar. Elaine explains that she was trying to put together a tent for them. Putting my purse down, I recognize the tent/house to be like the one I helped put together for my nieces and nephew in Houston last Christmas.

Elaine puts her baby, Joy, in a bouncer that hangs from the doorway between the dining area and the family room. Joy bounces there happily smiling while giggling and squealing. She has the most adorable bright eyes. We put together a few sections of the round plastic parts of the frame when her son, who is named Dale, discovers it and then endeavors to take it apart. Eventually I ask, “So, how do you want to do this?”, referring to the interview. I was willing to do it in the family room, before I noticed that her 1-year- old is constantly moving to various parts of the room—a moment earlier we turned to see

Dale grab my purse, which was just sitting on the couch. He was about to dump the contents out to see what was inside. Meanwhile, we spent a few minutes on the tent before she began to suspect that we were missing a needed piece. Dale must have hidden it or dropped it someplace. Elaine explains what it looked like, and I immediately see that this would explain the difficulty we were having in making it look like a proper shelter. We abandon the creation to be taken apart by Dale, and she shows me her kitchen table where we talk for the next 72 minutes.

167 This chaotic introduction to Elaine’s world—trying to build something together and failing together—all while not breaking a sweat is a great metaphor for life with narcolepsy. It is also an apt metaphor for what it means to have narcolepsy in a house with two young children.

Elaine’s Diagnosis Story

I met Elaine at the May gathering of the support group meeting in Columbus. She came in a few minutes late with a baby tied to her and with a toddler and a husband in tow. After a few minutes of the meeting, he took the curious toddler out to walk around the restaurant. We all were envious of Elaine when she chimed in to tell us about how her employers let her take naps and were eager to provide other accommodations. At 35, she was diagnosed with narcolepsy without cataplexy earlier this year, but she thinks her symptoms started to show up at the age of 16 or 17. Although classrooms are a place where she often falls asleep, she has a 4-year degree and lives out in Lancaster, Ohio, but grew up in Pickerington where her high school yearbook gave her the superlative of

“class sleeper.”

Even though she was called “class sleeper,” her symptoms were limited to predictable places, and like most people with narcolepsy, she became accustomed to falling asleep in class, while driving and while watching TV or movies. To adjust, she made sure she had a short commute (less than 15 minutes), adding, “But honestly, I guess

I kinda thought that everybody fell asleep when they drove. Like, I didn’t realize how abnormal it is, I guess. You know, falling asleep at lectures.” After she ran off the road a couple of times, she mentioned it to a couple people at work who said, “‘That’s not

168 normal. You need to go to the doctor to get it checked out. You can’t be running off the road every day you drive.’” Elaine had begun falling asleep like this daily. Her pregnancies got in the way of diagnosis because the sleep of pregnant women changes, but during her second pregnancy her doctors decided to go ahead and do a sleep test, and as they suspected, the test turned out to be inconclusive. After Joy was born—four months ago—she went to the doctor and had the sleep study where she was diagnosed with narcolepsy without cataplexy.

This diagnosis story is unique in that her co-workers intervened and not someone closer to her who might have noticed her sleepiness. Yet this story is a great example of how people with narcolepsy come to understand narcolepsy through interactions with others. The nature of sleepiness and sleep itself suppresses self-awareness and cognitive activity, and hence in our ability to recognize a problem is always impeded by the very nature of the condition.1 This is in addition to the long onset of symptoms that allow people with narcolepsy to grow more and more sleepy over the course of years, so they eventually find being sleepy to be a familiar and expected experience. The sleepiness of narcolepsy, prior to a diagnosis, does not feel excessive; rather, on the contrary, it tends to fit with one’s expectations. However, as her story shows, this sleepiness and sleep will, in most times, butt up against a world that has different norms around sleep and sleepiness. This delayed recognition is a common feature of narcolepsy diagnosis stories because often it is only through failing to meet expectations around sleep and wakefulness that people come to realize the possibility of an underlying medical condition.

169 Elaine’s narrative illustrates what it means to have narcolepsy at home. I conducted only one interview with her during which I asked about her home and saw that her story of having narcolepsy tells two distinct stories—one is the story of working while narcoleptic, and the other is the story of being a mother of young children while figuring out what narcolepsy means for her life and her family. This chapter will focus on the latter story but also recognizes that her understanding of what her home affords her is based on comparisons to what her work setting affords. For Elaine, experiencing narcolepsy at home entails moments of fulfillment and moments of discontent. In addition to focusing on Elaine’s story I will also share some of the stories form other participants about dealing with narcolepsy at home.

For many of the people I interviewed, home was simultaneously a site of tension and a reprieve from being at work where narcolepsy can impair productivity in ways that are difficult to explain much less compensate for. To explore the ways a person with narcolepsy is a misfit in their own homes is to explore the way narcolepsy may impair everyday life and intimate relationships. This chapter examines the themes of finding fulfillment and discontent at home with narcolepsy. First, we talk about the way Elaine has a sense of control at home that she cannot find at work. However, work offers a type of empathy she isn’t able find with her husband or mother who compose Elaine’s personal support system.

Next, I turn to the other interviewees and my personal experiences and investigate how these themes of discontent and fulfillment also appeared in our experiences of narcolepsy at home. For many people, home is a place of relaxation and comfort; but for

170 many people with hidden disabilities, home is a site where the intense and indispensable backstage work of managing a chronic condition occurs. Different bodies inhabit and engage spaces differently, and this means that what one’s home affords reflects a person’s perceived capacities. Throughout my time conducting interviews, I saw homes that were quaint and worry-free, and I also saw homes where tension and disorder were just a façade hiding other layers of relationships between bodies and space. More surprising to me than the range of adjustments and fit was the reticence many expressed about inviting me to their home. I grew up in a household that was not presentable to strangers most days of the week; and in the months following my time in the field while juggling new medications, pursuing a job hunt, and preparing for class, my apartment came undone in new and frightening ways. This most intimate of spaces, like every space, allows narcoleptics activities in accordance with our capacities.

At Home with Unpredictable and Misunderstood Sleepiness

As I discuss confidentiality and how she can end the interview at any time, the baby in her arms is wailing. She begins to pat her on the back as I confirm the contact information. The baby—an infant who has visibly grown since the day I first saw her at the support group meeting—stops crying as her back is patted. Instead of having Elaine fill out the demographic form, I fill it in so she can continue to pat the baby to sleep. Joy falls asleep 40 minutes into the interview.

When I ask about her medications, one of the pre-interview questions for the demographic form, our conversation switches from pre-interview to interview as she sighs and says, “You see, that’s what we are still trying to figure out.”

171 Her baby whimpers at the change in pace and tone in her voice. She explains how the issue of medication was tied up with how long she was going to breastfeed, and now that she is done breastfeeding they have to find out what medications she will be on to manage her symptoms. A children’s TV show plays in the background for the older boy.

For a few minutes, it sounds like he was determined to put the tent together on his own.

Dale does not go into the other room until Elaine gets up and closes the toy box near us.

“Stay out of there,” she tells him, as I start to mention the consent form and offer to fill it out for her—except for her signature, of course.

After telling me about how her co-workers told her to go to the doctor to see why she was so sleepy, she abruptly pivots by saying, “And I started falling asleep with patients, like while I was cleaning teeth--while I was like doing the micro sleep thing.

Nobody ever noticed that I was falling asleep but I was definitely falling asleep.”

To better understand what she is describing, I ask what microsleep is like for her.

“I just start kind of dozing I as I’m working, just repeatedly though. Not ever really nodding off completely, I don’t think. Well, I mean, I do because I’m doing things I don’t really remember doing it.” She works as a dental assistant, and as she confides this images flash in my mind of the danger she might be putting herself and others in.

Then I add, “That’s something else, I can’t remember what it is called, but that is, um, automatic behavior.” Automatic behavior is a symptom of narcolepsy in which persons drift off while doing a familiar and repetitive task that has been done several times before. These lapses are perceived as a loss of awareness or consciousness,

172 experiencing a blank moment and some people have reported being partially aware of their automatic behavior during the act.2

To which she responds, “Oh yeah!”

To make sure she understands, I state, “Automatic behavior because you’re present but because it is something you’ve done in the past your self-awareness can check out and you’re like, and suddenly your here. It’s like, ‘Where have you been?’” hoping she is familiar with the concept. She was not falling asleep in the conventional sense of the concept—few of the intrusions of sleep into wake states are conventional experiences of sleep. Rather she was sleepy and experienced automatic behavior, but this correction does little to ease the sense of alarm her confession brought.

At this point, Dale brings his sippy cup and sits it on the table timidly declaring,

“All gone.” Elaine asks him if he wants more but he just repeats himself.

She continues to explain that she does not think her head nods while dozing off because then patients would have noticed and said something. Elaine is describing a sensation that she knows something is happening and is looking for clues to help her understand what it is because her ability to understand her experience of narcolepsy is impinged by the nature of narcolepsy and is further hampered by her unfamiliarity with the condition.

I am familiar with the sense of wondering what just happened after experiencing a symptom. When driving, for example, I could feel a micro sleep happen only through the sensation of waking up that hits me. Otherwise, I explain, there is no evidence of sleep, “because you’re still pressing on the gas.” This is another example of how

173 narcoleptics’ experience of sleep is partial and often bearing no resemblance to non- disordered sleep.

She concurs, “right, yeah. That’s kinda how it is for me too. I don’t really know that I’m falling asleep until I’m coming back, but I’m presuming its really quickly; it’s not happening for very long.”

Our attempt to talk about what happens when our brains are half asleep is one of the reasons why people with narcolepsy need support groups, Facebook groups, more communicative doctors, and do a lot of information seeking behaviors—so much of the language and the experience of narcolepsy sits just beyond the curtain of consciousness.

Our inability to access much less know what is happening is something we can only sometimes admit to ourselves, and then once we do, we are vulnerable because these fragments of non-moments are central to what it means to have narcolepsy. Early in our interview and throughout it we worked to put our fragments together to learn how to tell our own stories more fully.

Early in the interview, Elaine used silence to invite me to say more about my experiences with similar symptoms. This was good because often during my interviews I found myself feeling bad about taking up some of the time we have together. Her insistence on hearing my story told me that she appreciated and needed help making sense of what she was experiencing. There were many moments when we finished each other’s sentences, and at the end of the interview I knew that she needed my stories about narcolepsy just as much if not more than my need for hers.

174 Control and Support at Home

Elaine’s ability to manage moments of unpredictable sleepiness at home became evident once she puts it in contrast to her experiences at work where, despite the generous accommodations, she feels unable to control the environment. Elaine thinks her kids are unaware of her sleepiness and naps at this age. She goes on to explain how she had her mom help her drive to the two appointments she had one day. Gesturing with her chin to where Dale is watching TV, Elaine explains, “The mornings I don’t worry about as much because I generally do fine with my meds in the morning. The afternoon I was pretty worried about after we ate lunch I put—my go-to is Pepo the Pig because he loves it and he’ll sit still for the twenty minutes it’s on or whatever. [Joy] had just eaten and was asleep. I just turned it on and made sure the gates were up and went down and slept for like ten minutes but it was enough to, you know, make me able to drive there and back.” Later she adds, “I feel like I keep up fine here. It’s work where I feel like I can’t.”

She suspects that she should be more active with her husband but otherwise she feels like she gets everything done at home that needs to get done. Elaine’s experience of narcolepsy at home includes strategies that allow her to control her environment and the demands she responds to. This sense of agency and control is what is missing from her experiences at work.

As an example of how narcolepsy leads to a sense of “sinking,” she returns to the topic of her work explaining, “Some days are fine. Some days I feel like I can’t keep up.

Like I’m just sinking. And patients are scheduled every 15 minutes and I’m like twenty minutes behind because I just can’t, I can’t keep up. I can’t process. Sometimes I feel like

175 I can’t communicate with them well some days.” Later in the interview she describes being in tears because she is not able to keep up. This struggle to perform at home and at work became a key theme early in her interview. As she goes on to tell me more about her life at home and the relationship with her husband, I come to understand that her fear of being discontent lies in the way her desire to be competent at work is based on her desire to financially contribute to her family.

Elaine also is satisfied with the type of help she gets at home from her mom. I asked, “Do you think there are other relationships that help you manage . . .”

Before I finished my question, she states, “My mom; she drives me. Whenever I have appointments up at Children’s [Hospital] or I have appointments up in Columbus she’s usually the one that’s driving me around.” I sense an opening and ask about the house by prompting, “tell me a little more about this place because, you know, you talked a little bit about lifestyle adjustments, right, and the commute sounds sleepy, right?

You’re also not in walking distance to anything, right? (See Figure 4) . . . Or does this particular home have a particular story?”

After a pause, she explains that she is from Pickerington and her mom lives 7 minutes away and, before the kids, they used to live closer to where she works—now they are 45 minutes away. They decided to move out near her mom to get help with the babies.

Her son returns to the table and says, “All done.”

176

Figure 4. Field across the street from Elaine's house.

She goes on explaining “We kinda wanted to be closer to family for the help so. . .

We wanted just wanted to get back down this way to be closer to family.” They have been in the house less than two years. While she is a little less than satisfied with the support her husband offers around the house, Elaine maintains that narcolepsy is not a source of tension between them.

At work, there is a co-worker who has dismissed narcolepsy as a real condition and continues to antagonize Elaine. I ask if she ever jokes about narcolepsy, and she says she does not and that it “sucks.” She goes on to tell me about a co-worker who “I think she thought it was funny and thought that I was just a lazy piece of crap, probably. She would just make comments like, like I mentioned, you know, some people end up on disability because of it or whatever and she’s like ‘For narcolepsy?’ And I’m like, ‘You have no idea how terrible this is.’” Then Elaine goes on to talk about how she went to a continuing education course that took place in Los Vegas, and, “Of all people she was 177 the one sitting next to me through the lecture. I mean, I drank so much coffee I was sick to my stomach and I could not stay awake. I could not stay awake. And she’s like, ‘What is your problem?’” I interject, “Oh, and then since it is Vegas, people presume like it’s because of a hangover.” This type of dismissal and invalidation is more disconfirming than any apathy she may experience at home.

Her inability to change the mind of her co-worker allows her to appreciate the agency she has at home around helping her husband understand narcolepsy. As she explains it, she gets, “irritated with him because he doesn’t get that, you know, I need to be in bed on time. ‘You can stay up until 1 and get up at 7 or 6 or whatever, I can’t do it.’

Like, ‘I need you to understand’. But we don’t really argue or fight.” Although her efforts at educating him have, so far, failed, his reaction does not seem to dismiss or invalidate her the way her co-worker does.

I hum in agreement and ask, “What do you think he understands about it? Like, what do you think he understands?”

Elaine describes leaving him paperwork for him to read so he knows about it. To clarify she adds, “He’s not a very empathetic kind of person. If it’s not affecting him he doesn’t really get it. Like, and he knows that.” At this I explain that, as a single person, I have noticed that some guys are good at taking on the caretaker role but other guys are not so familiar with the caretaker role.

To this she says, “Yeah, my husband is not the caretaker role [type].”

Elaine’s busy life with two babies was recently made even more hectic with the diagnosis of narcolepsy. When I interviewed her, Elaine was at the very beginning stages

178 of learning what narcolepsy means to her life and her family. While the people at work are very supportive of her pregnancies and her narcolepsy, she is not able to control the environment there the way she can control it at home. The unpredictable nature of narcolepsy can be better managed at home where she can quickly adapt to what she and her family needs.

Other interviewees spoke about the tensions that narcolepsy creates at home. To support and nuance the meaning of narcolepsy at home I will put their stories in conversation with Elaine’s story. Many people I spoke with felt that their time at home was spent not doing as much as they would like. When I asked Penny about what she would do if she did not have to work, she explained how she said, “Making my home into a place that I felt proud to show people.” However, at the time her husband was convinced that she did not want do anything. Because of the lack of energy and sleepiness, her husband does a lot of the things around the house. As she puts it, “Chores, bills, like any sort of like household thing that needs to happen, he does everything.

Taking care of the pets, um yeah everything. Grocery shopping, cooking, cleaning. I help out a little bit but it’s a negligible amount.”

During my first interview with Cynthia, who has lived several years with narcolepsy, she discussed tensions narcolepsy created at home. Before Cynthia’s narcolepsy worsened to the point of needing medication, her home life was not perfect but her sleepiness made dealing with larger issues more difficult. She explained how once her mother passed away, 13 years ago, she inherited all of her belongings, and so she

179 moved these things into her own home to work on in her free time. However, as she puts it:

I keep procrastinating and putting it aside. And so that’s kind of how I feel here is

like I probably put a lot of things off sometimes. Like I said, I tend to focus more

on work, my personal life, and my home life, and all of that suffers because I

can’t focus on all of these things and get all of these things done. I can only focus

on one.

Sleepiness comes in many forms and Cynthia is describing the way inattention, difficulty organizing, and other forms of sleepiness interferes with being able to take on and complete personal projects.

The Misunderstood Sleepy Self

Elaine’s account of narcolepsy includes several instances in which she expresses discontent with herself and her sleepiness. Managing her narcolepsy competes for her time, and when that happens she is hesitant to make time for sleep, explaining, “Napping during the day can’t really happen anymore. Or I guess it could but I got to get stuff done around here, you know.” I ask which areas of her life are most affected by narcolepsy.

“Well, my husband ends up having to pick up a lot of the work I can’t—mostly on the evenings that I have to work the next day. I go to bed and the house is just a wreck.”

Elaine says, “I’ve never been one that likes to ask people for help. Like I hate to have to ask for help,” adding, “I guess I’m too independent or proud.” Unlike women more eager to call on men for a helping hand, Elaine says she has told her husband “no,

I’ll do it myself.” She continues, “I’m just like that. And I tried to take, I don’t want to

180 disappoint anyone by like—I don’t want to look like a slacker. So, asking my husband to do things that I feel like I should be able to do makes me feel like I’m not pulling my weight. You know what I mean? So, the fact that I’m really struggling to get by at work. I don’t want him thinking that I’m like, that I want to stop working because I don’t want to help out.” Elaine is worried that her need to take naps and manage narcolepsy may be misunderstood as a choice to not spend time and energy on the family and its needs.

Switching back to how things are at home, she explains, “They actually sleep really well, there’s just so much more to do. Napping during the day can’t really happen anymore. Or I guess it could but I got to get stuff done around here, you know.” I wonder aloud how does she do it. I then go on to describe how my sisters have an informal rule that I am not a baby sitter. Her boy starts to cry because he had been putting the tent pole in his mouth and walking around with it and he starts to whine to which she responds,

“That’s why you don’t walk around with them in your mouth.” Later she returns to this topic adding, “It’s hard to manage work and home. Like I’m, like I said before, I feel like

I’m sinking sometimes.” She walks to the sink to put water into the cup.

Aurora has a similar story because she was homeschooling her children when her sleepiness started to become more obvious. As she explained, “during the day, during story time, or whenever, I could not stay awake. That was the biggest thing with the kids.

We had jokes and what not.” Once she is diagnosed with narcolepsy she developed cataplexy but the medicine and treatment didn’t seem to work. As she explains: “But at the time, my husband at the time, ex-husband, he, ‘You just need to get more sleep.’ He didn’t get it. ‘You’re just wearing yourself out. You need to know when to shut down.’

181 He didn’t get it.” Later Auora explains that his inability to understand narcolepsy is, “the straw that broke the camel’s back,” because, “In his mind, even if I wanted to fight, I’m not going to fight anymore. I’m just going to use narcolepsy as an excuse and shut down.

That was happening because I was so stressed out.” Aurora also regrets not being able to do more with her children because of the tiredness that came along with narcolepsy.

Narcolepsy, for Aurora and Elaine, means possibly being misunderstood in fundamental ways while also creating a sense of guilt for having limits that few family members may truly understand.

Conclusion

Elaine finds fulfillment in the roles and responsibilities that bind the family together and create a sense of control and belonging. Meanwhile, home also is a place where we can see that her family’s misunderstanding about narcolepsy leads to guilt, lack of support and creates additional stress. Repeatedly, she reiterated how she felt like she is

“sinking” because she never has enough to achieve to in order to commute to and from work 3 times a week. At home, narcolepsy may mean endless obstacles to fulfilling one’s role as a mother but it can also mean being able to manipulate the environment and situation to carve out time for a needed nap. Elaine’s story also demonstrates how geography plays a significant role in navigating narcolepsy.

According to Arthur Frank in The Wounded Storyteller, Elaine’s story resembles a chaos narrative because of the overdetermination of narcolepsy in her stories and also because of the lack of narrative sequence.3 Elaine must deal with a sleepiness that is not yet understood and is not yet under control of medications. Like the moment of hearing

182 Elaine’s story of falling asleep while working with patients, chaos narratives are hard to hear and can provoke anxiety. Our sharing of each other’s stories helps our stories invite others to recognize themselves within it. It also points to the ways that the true chaos narcolepsy may create is, “the hole in the telling,”4 because so much of the experience of narcolepsy exists in subjectivities that lack speech. While Elaine’s story reminds me of

Frank’s concept of a chaos narrative the next chapter centers around a type of testimony narrative.5

Chapter 6 Notes

1 Zamarian et al., “Subjective Deficits of Attention, Cognition and Depression in Patients with Narcolepsy. [Abstract],” 45; Naumann, Bellebaum, and Daum, “Cognitive Deficits in Narcolepsy. [Abstract],” 329. 2 Morandin and Bruck, “Understanding Automatic Behavior in Narcolepsy,” 1. 3 Frank, The Wounded Storyteller : Body, Illness, and Ethics / Arthur W. Frank., 99. 4 Ibid., 102. 5 Ibid., 137–38.

183 Chapter 7: Driving with Narcolepsy

It is customary to presume that others go about breathing and walking in a way that reflects how oneself breathes and walks. It requires a leap of imagination to recognize that alertness and sleep are not like breathing and walking—that is, we can see if a person is having difficulty breathing or walking, which makes it easy to recognize the differences between people. However, for people without narcolepsy or other conditions that might involve extreme fatigue or sleepiness, it is often difficult to understand the difference. If one’s experience of sleepiness has never been violent then how can one imagine sleepiness as a dangerous force that pressures and pushes people with narcolepsy around. When I try to imagine what sleepiness is like for people without narcolepsy, I see it as a light mist that may or may not proceed a rainstorm—it does not warrant an umbrella and does not warrant worry about danger and car crashes. People without hypersomnia disorders spend several minutes courting sleep and sleepiness with sleep routines, sleep drugs, stillness, and patience. Therefore, I can see how someone could eagerly resist the idea that these coy and reticent bedmates can be cast as pirates and terrorists in the lives of people with narcolepsy. Moreover, the notion that these welcomed bedfellows could be unwanted or are overstaying their welcome requires a great deal of imagination on the part of others.

However, to understand the experience of driving with narcolepsy, one must first understand the chimerical experience of excessive daytime sleepiness. The purpose of this dissertation is to help provide accounts of narcolepsy and the sleepiness; however, there is no getting around the fact that central to the issue of narcolepsy and driving is the

184 question of trust. This chapter does not want to betray the trust placed in people with narcolepsy, rather it seeks to create a nuanced account of what driving means to Sable and others with narcolepsy. Popularized depictions of narcolepsy as falling asleep unexpectedly contributes to the idea that driving for people with narcolepsy is inherently dangerous—even if the person in question does not feel sleepy, is on adequate medication, and takes several precautions to avoid putting themselves and others in danger.

Indeed, there is no shortage of driving simulation research and survey research that suggest that people with narcolepsy are dangerous drivers.1 Additionally, cataplexy is also a symptom of narcolepsy that can impair driving. Some researchers who know about the soporific force of excessive daytime sleepiness and the unpredictable nature of cataplexy argue that people with narcolepsy should have restrictions placed on them by their doctor or the state.2 However, as simple as this argument may appear, the absence of news stories in which people with narcolepsy kill or maim drivers and or pedestrians complicates the idea that people with narcolepsy are more dangerous than other drivers.3

There no reports of deaths by narcoleptics behind the wheel because as drivers, they not only are aware of sleepiness and cataplexy, but these symptoms prevent people who are unable to drive from driving—people unable to keep their eyes open are not able to put the keys in the ignition. While both pictures are easy to believe—narcoleptics as dangerous drivers or as unable to cause harm—the reality is complicated. This chapter hopes to show a more nuanced understanding of what narcolepsy means when behind the

185 wheel. In addition to the salient yet shifting meanings of danger, cultural messages about driving also help construct the experience of driving while narcoleptic.

Sleepy driving is not unique to people with narcolepsy. In the 2012 National

Sleep Poll 80% of drivers admit to driving while drowsy.4 This happens despite 23% of drivers know someone who has crashed because the fell asleep at the wheel.5 The likelihood of being involved in an accident is not only a matter of personal choice and chance, but it is also connected to the circadian rhythm. The circadian rhythms of most humans make around 2:00 p.m. and 2:00 a.m. the times when the body is more prone to falling asleep.6 In Stanley Coren’s book, Sleep Thieves, he reviews the work of Peretz

Lavie, who found that traffic accidents peaked in Israel during the hours the low points in sleep wake cycle create stronger urges to sleep. These peaks were between 1:00 a.m. and

4:00 a.m. and between 1:00 p.m. and 4:00 p.m.7 The morning peak is much more severe even though there are fewer vehicles and therefore less opportunities for accidents.

Driving is a major part of the iconography of the U.S. 8 While getting a driver’s license is still a major milestone in the lives of youth in the U.S. fewer are choosing to get a license and this may point to a change in U.S. car culture.9 While driving represented freedom for previous generations generation, Y-ers see the environmental costs of driving, the danger, and isolation from others and devices as things that make driving less appealing. Knowledge about cars has been considered male province since the first T-

Ford came off the assembly line in 1908.10 While driving is a way to express, follow, challenge or reinvent social identity categories such as race,11 gender,12 age,13 class,14 and ability.15 Driving also represents the freedom of being able to choose where to go at any

186 moment and people’s emotional connection to driving can be seen in the way cars are given names and are talked to.16

The road movie is a genre of American films that built upon the adventure genre of American Literature.17 In movies, however, the journey is a form of cultural critique and traveling is a way to explore one’s self and the world.18 Driving is a site of diverse subcultures,19 a site of protest and activism,20 a site of leisure,21 and a site of innovation and development.22 These and other cultural, structural, historical and personal factors are at play in driving despite tendencies to communicate about driving in terms of individual responsibility and individual choice.

Sable is 56 years old and has narcolepsy with cataplexy. Sable gave up driving many years ago so to explore the meaning of narcolepsy in the context of driving, I conducted Sable’s second interview while in a car. After introducing Sable through her diagnosis story, I will explore the themes that emerged in my interpretive phenomenological analysis of her second interview. Sable’s interview revealed two conflicting meanings of driving: narcolepsy makes driving dangerous, and narcolepsy makes driving necessary. After narrating our discussions I examine how they shed light on what narcolepsy means while also weaving in stories from other interviews. I conclude by arguing that the meaning of driving is tied to the personal and social resources and roles people have. These resources can alleviate the risk and danger of driving, while the roles people play and want to play will continue to pull them to find safe ways to drive.

187 Sable’s Diagnosis Story

I met Sable when I agreed to hang out with Jane in hopes of being able to do another interview or just learn more about the person behind the Columbus support group. I was at Jane’s house while we waited for Nancy to pull up. The plan was to follow Nancy to Sable’s place to chat. Happy to meet others with narcolepsy, I was eager to be included. Sable greeted us at her door and welcomed us in while leaning on the wall to support herself. Inside we sat on a sofa in a smoky dark room facing a large patio window where light poured into the room. I enjoyed meeting new people, but darkness is my kryptonite, so I resisted leaning back onto the chair where sleepiness might be waiting. I was charmed by Sable’s kitten who was shyly exploring the room—staying far away from us but close enough for me to admire her. I have a beautiful cat, and it is very rare that I see a cat that could compete with mine on that metric. Mango is a petite rescue kitten that looks to be a mix between a Siamese and a white and grey American

Shorthair.

When it came time to talk about my project, I remember reassuring myself that I was doing good, despite my fear that the dark room might get the best of me. Both Nancy and Sable were happy to join the project as interviewees. The following week I returned to Sable’s place for an interview, and this time I told her about my aversion to darkness.

After some deliberation we decided to do her first interview in her gated patio at the umbrella table on a bright cloudless day.

Now 56 years old, Sable was diagnosed with narcolepsy in her second year of college, in 1978. Sable married Kevin a few months before she was diagnosed with

188 Multiple Sclerosis (MS) in 1990, which came after having lived with narcolepsy with cataplexy for many years. Sable recalls having problems with reading growing up. She tried standing up and sitting up to read but she tended to fall asleep while reading even at a young age. She explained, “I had a terrible time with reading. I knew how to read; I just kept falling asleep.” In college, she had one semester where she did really poorly because she wasn’t able to stay awake during the final exams. While the sleepiness was getting in the way of all sorts of things, Sable says that, “But the cataplexy is what took me over the edge. I mean, I just—I couldn’t walk down the hall. Somebody tells me a joke, I’m down at work or school, anywhere. I could fall flat down on my butt.” Her cataplexy developed around the age of 22, and for a year she would experience muscle weakness, so if there was a chair or something she could just take a seat. Yet standing up is a strategy to help manage her sleepiness. This progressed to falling. Laughter was her main trigger. She tried several medications to control her cataplexy, and nothing worked for a while until a doctor recommended Prozac. Sable went from having three or four cataplexy attacks a day to having two to three over the course of a year.

Sable’s dad vehemently rejected the idea that she had narcolepsy. To help show him it was a real condition, Sable brought a video of dogs with cataplexy home and he refused to believe it was real. When she told people about narcolepsy, it was greeted with laughter. She recalled, “They thought I was kidding. It was just, ‘Oh, I was just trying to get a good laugh out of all of them.’ ‘No, no, no. This is for real. This is a real illness and a real thing.’” Such reactions have not discouraged her from talking about narcolepsy. In another conversation, she told me that Kevin tries to encourage her to talk about it less.

189 While in college she was in a sorority, and after being diagnosed since they were not able to regard narcolepsy as a real thing, she decided to leave the sorority.

Sable met Nancy, around the age of 19 or 20 while at a sleep convention downtown. As she describes it:

We all went out somewhere to get something to eat or drink after this lecture or

something. And Nancy went and somehow or another, we just started talking.

And she was a local bird like me, and she had the same thing I did. And she was

such a sweetheart, nice person. And I’ve been in touch with her since that day

ever since.

Nancy and Sable ran the Columbus support group when Jane came along much later and was able to put the group on Facebook where people who are newly diagnosed are able to find the group. Sable believed, “I needed it most at first. I needed to accept it and understand it.”

After being fired for her sleepiness from a federal government position, her mother worked with her to find a lawyer to represent Sable and was eventually awarded disability retirement payments. After going months without an income, Sable was able to buy the condo where I met her when she was 22. For some time, Sable was a wheel chair user because her leg refused to bend. Today she uses a walker to get around.

The Life Threatening and the Life Sustaining Meaning of Driving

One of the early lessons I gleamed from my interviews while still in the field was that many people with narcolepsy had car crashes. Even though my own car displays evidence of the last two times my car hit something, I did not suspect that the personal

190 vehicle would emerge as a major site where the meaning of narcolepsy can be examined.

I did a lot of driving for this project which does not sound like a lot, but for many people with narcolepsy, driving is precarious. One day while on I-70 heading to meet Nancy for an interview, I saw a semi hanging off a bridge with the trailer pointing into the air (See

Figure 5). Since I wanted to capture memorable events during my trips to and from

Columbus, I pulled out my phone and took pics as I drove by. People do a lot of unsafe things behind the wheel, narcoleptic or not. I saw a few other drivers doing the same. In the moment, it seemed like a perfectly reasonable thing to do. Only now, as I write this, do I recognize the risk I was taking while driving. Hindsight always offers a lot of alternatives. Hindsight is a major character in this story, always offering value after the fact.

Figure 5. Photo of a truck hanging from bridge.

191 I asked many interviewees about conducting interviews in their car as one of the salient locations that appeared in their diagnosis story. This suggestion was regarded in various ways—sometimes silently, sometimes recognizing the logic of it, and other times

I rescinded the suggestion forthwith, recognizing how their obligations and commitments make being honest about driving difficult. Sable’s reflections on driving come from the perspective of someone who has given up driving, and therefore they serve as a proxy for people, like myself, who are still driving and napping behind the wheel. Her story of driving is an opportunity to examine the practice through the eyes of someone who clung to driving fiercely but eventually decided to give up driving because of her narcolepsy and her MS.

Sable’s understanding of the dangerous choices to drive before her cataplexy was under control or while vulnerable to sleepiness are ultimately shaped by the value placed on the life-sustaining meaning of driving as a way to manage narcolepsy and feel independent. In our interview, Sable uses communication to wrestle with these contradictory meanings of narcolepsy in relation to driving.

The Dangerous Narcoleptic Driver

Sable’s second interview touched on several ways in which driving was dangerous. She began the interview by clearly denouncing the idea of driving with narcolepsy and then went on to describe the many accidents she had before giving it up.

Sable’s stories about driving include many accidents while also reflecting on the paradox of driving as a person with narcolepsy, which holds that it is both life threatening while also being a considerable source of independence and agency. We also talked about the

192 various ways she guarded herself against car accidents by having strategies to promote alertness and keep sleep at bay.

I find her condo with the help of Google maps even though I have been there before. Sable greets me at the door and lets me in where I am happy to see Mango again, but I am less charmed by the little white dog who barks constantly and wants to put his paws on me. I greet her husband before we head to my car to talk about her memories of driving and the reasons she gave it up. Using her walker, she walked to my car and got into the passenger’s side of the car. After getting in my seat I realized that I should be in the other seat. Rather than making an issue of it, we started to chat about the group while

I fidgeted with my phone to turn on the recorder. My Corolla is silver with a light grey interior and black carpet. It is one of the larger makes because it was made in 2010 during a time when many car makers were increasing the size of all car classes. Since it was hot I started the ignition to put the air conditioning on.

After chatting about the support group and not being able to be involved in it any more, Sable says, “but anyway, about driving ... I had just little accidents here and there.”

I follow her lead and say, “So tell me about that.”

Once while exiting a major freeway, she explains, “I was awake enough somehow to get off that exit and then I faded out again I guess. I rear-ended this person, and they rear-ended somebody, and then they rear-ended somebody. Oh, God, it was a mess. I still didn’t give up right after that either.”

193 Going on she claims, “I remember it was snowing. Windows all the way down and my hands were out the window, I was freezing them off to keep me awake; whatever I could do to stay awake. I made it home, no accidents and all that kind of stuff, but a bunch of things have happened to me when I’m driving and I still didn’t want to give it up. If it wasn’t for Jeff, I still think I would probably be driving.” Although she regrets causing accidents and driving for as long as she did, she wants to reassure other people with narcolepsy that she would never insist that they cease driving. She states, “I would never go into a court thing and all that against people with narcolepsy;” adding, “We all have to give up our driving privileges. I think that we should. In my heart and mind.”

Then she recognizes that this is based on her experience of sleepiness and driving noting,

“I feel that there’s so many other people that do it every day and never have a problem.”

Here she takes three positions on driving that I see in the interviews and in my experiences with driving: driving is something that requires strategies and techniques, driving is a site of a lot of occurrences, and driving is contingent on her social resources and responsibilities.

While I was surprised by the frequency of car crashes my interviewees mentioned, this perhaps reflects more on the experience of pre-diagnosed narcolepsy than that of people who are aware of the risks involved and therefore learn to adjust accordingly. As an extremely heterogeneous condition, there are people with narcolepsy that have never had issues with driving and experience the opposite of being sleepy while behind the wheel. John, for example, has never had an issue with driving and considers himself to be the safest driver he knows. Similarly, Grouse provided a rich account of

194 why he is confident about driving. In comparison to watching TV Grouse finds driving to be much more invigorating, observing:

Well, if you were to compare it to driving. Driving, for me at least, there’s more

stimuli. There’s more kinds of stimuli. You got scenery. You see something over

there. You’re looking at the cars, ‘Oh, what model is that’. You got the light, you

have the shades the sky and you got the cars zipping by. You got a lot of things

bombarding you so that tends to keep me awake. But as soon as I pull in the

driveway and come in and sit down on the sofa: I’m gone. That’s the tendency.

For Grouse, driving is a type of safe zone where the enviorment is so stimulating that he is unlikely to be susptible to sleepiness. As a person who has never or rarely worried about sleepiness while driving, the task of driving affords him capacities that it does not offer Sable and others.

All the people I interviewed were diagnosed as adults who had already become accustomed to driving, and so their story of driving with narcolepsy is very different.

Prior to diagnosis, they approached their vehicles with the same attitudes most people have around driving while sleepy—unaware of the danger of irrepressible sleepiness unique to narcolepsy. Many car crashes later they are diagnosed with narcolepsy and given medication to make driving easier. For many people this suffices, however others are dissatisfied because there are no standardized criteria to determine if it is safe for a person with narcolepsy to drive or engage in similar tasks.23 It is important to clarify that the question of whether a person is diagnosed or not is a very big one. People fall asleep and crash and are undiagnosed are not narcoleptic—their sleepiness could be due to a

195 number of conditions that cause hypersomnolance. This chapter is concerned with people who are diagnosed and are under the care of a doctor for managing their condition. Safety concerns arise when an individual’s symptoms are not adequately managed,24 and as discussed previously, it can take years to find the correct medicine and dosage while attaining the medicine remains subject to the discretion of health insurance companies.

Strategies for Managing Danger

Like the discomfort of sticking her hands into the frigid air, there are several strategies for when narcoleptics sense that sleepiness has joined them on their journey.

As someone from the deep south, the idea of making yourself cold to stay awake was novel but ultimately dependent on geography and season. I returned to the topic and asked, “When you were driving, how would you try to stay awake? You told me some of the things like keeping your hand out the window even though it’s really cold. What are some of the other things?”

She told me, “Radio, songs, whatever. If I had a tape player or whatever, some kind of music.”

To clarify I asked, “You would just like put it on, or put it loud, or what?”

“I’d put it on medium loud. Nothing blaring blaring, but just so it could keep my mind activated so it wouldn’t go to sleep hopefully. If I had a song going on in my mind.

Things like that, I guess.”

“Anything else?”

She added, “I can’t really think of anything else. I always made sure I had something to drink with me. I figured if nothing else, usually water I could just throw it

196 on my face if I had to, you know what I mean? I remember getting out and putting snow on my head before.” African American women tend to develop aversions to putting water near their hair, so this idea of splashing water on my face never seemed real. I also tend to wear make-up which also would make it less appealing. I began to wonder if it works.

Out of curiosity I asked, “When did you start doing that?”

Sable answered, “Oh, way back,” using her hands for emphasis before continuing, “I don’t even know if I was diagnosed with narcolepsy yet. Probably was . . .

I must have been 22 to 26 maybe, somewhere like that.”

I ask for a demonstration, and she shows me how she would put water on the tips of her fingers and then flick it onto her face by opening her hand while it faced her. If this didn’t work, she would just pour water on the top of her head. I offer the things that I have done—not leaning back on the seat, singing a song; I even tried calling someone once. On long trips, I would be sure to bring sunglasses because if I needed to nap in a parking lot, the sunglasses might hide my sleep from onlookers.

Moving on to another topic I posed this question, “Were there any kind of thoughts or worries or concerns or anxieties?”

She confided, “Oh, definitely. Always, there would be. ‘I feel good,’ but I never knew because sleep would hit me somewhere between here and my destination. Usually my destinations were within a half hours’ time at the most, but I always just kind of said a prayer to myself and to the Lord and said, ‘Help me get there safely’. Most of the time I did, but not all the time.

197 Once diagnosed, Sable approached driving aware of how narcolepsy placed limitations to how she could safely drive. Like the strategies that Sable mentioned, many people I have interacted with online and in person discussed naps as a strategy for managing unpredictable changes in alertness that may occur while driving. Nancy, the good friend of Sable, has a habit of taking a nap before approaching the task of driving to the grocery store. This is how Nancy chooses to manage sleepiness around driving while not placing limits on her ability to drive. Like Sable, Nancy also is retired so she can take three to four naps a day—an option that people who are employed or in school may not have.

Aurora, on the other hand, has her cataplexy under control, but if she finds that she is driving and starts to sense some sleepiness, then, “I have to pull over.” She elaborated by adding, “I’m really good at sensing, knowing my limitations. If I need to pull over, if I need to stop, I’m going to because I did have a car accident once.” Aurora explained that the accident happened because she was distracted for a second or fell asleep for a second, and before she knew it the morning traffic turned into a three or four car pile-up because she missed when the car in front of her started to stop for a stoplight.

She learned from the accident, and telling me that “Now when I see it, I don’t even try.

It’s like, ‘Okay, you’re starting to have issues, shut it down’. Don’t even ‘Maybe I could press through,’ is not a friend.” Aurora learned the hard way that even if she thinks she feels awake, mornings are not a good time to drive, so she usually has her son drive in the morning.

198 Considering their vulnerability to falling asleep while driving, choosing not to go to an event is another way that people with narcolepsy adjust their driving choices. Penny talked about having to turn down invitations to go places because of the issue of driving.

For the book club she was a part of, she succeeded in volunteering to host meetings, which meant she didn’t have to commute. However, when someone on the other side of town hosts them, she would worry and weigh not going up against the possibility of getting into yet another accident.

Dangerous Sleepiness

Wanting to know how sleepiness affects her I asked, “What would that, ‘Sleep would hit me,’ mean? What do you mean by that?”

She admitted, “I just couldn’t keep my eyes open any longer. Of course, you can’t drive with your eyes closed.”

I wondered, “How would that feel? Would you have a feeling, like a heads up, that you knew something was changing, or would it just change?” In other words, did she get warnings about sleepiness or would she just fall asleep?

Sable stated, “A little bit of both,” adding, “but I think mostly that it would just change. It went both ways sometimes, but I know there were a lot of times where I would just go off the road and lay down and sleep in my car or whatever. Kevin was working at a computer store down at the Easton Shopping Center. I don’t know if you know where that is; but anyway, there’s a shopping center down here and there’s a computer store, and he was fixing computers and doing computer stuff and all that for his job. We had one car and I was just in during the day toward when he was getting off. I went down to

199 pick him up and for some reason I got real sleepy and I just parked somewhere in Easton

Shopping Center’s parking lot, just laid down and fell asleep in the car.” She gestured that she had a car with a bench front seat that didn’t have a console dividing the driver’s side and the passenger’s side, so she was able to lay down in the front of her car. She would nap in her car a couple times a month, “not every day.”

This was a world without cell phones and ubiquitous digital watches, so her naps looked different from the ones I took even in doing my commutes to and from Columbus.

She revealed further, “I just would wake up when I’d wake up. Usually I’d always wake up within two hours, it seems like, from my bladder if for no other reason. I’d just kind of rely on that for the most part.”

Another way that Sable tried to minimize the danger of driving is by avoiding certain types of things. She recounted, “I was trying not to get on the freeway a lot of times, but if I could avoid it, I just thought I would be safer at a slower speed. If I was going to have an accident, I’d rather have it at a slower speed with less chance of me getting hurt, of course, or anyone else or anything else. Like I said, I was always running late for work because I hated it so much I guess, but I’d be racing down that freeway. At the time, I was driving a ‘62 car, and it was a badass car.” Sable continued to use the fact that she didn’t get a ticket for all the speeding she did, ultimately attributing it to the old car.

I wondered, “So did you ever get a ticket, or did you ever feel like you’d get one?

Because when you got in these car accidents, you got a ticket, or did you?”

She admitted, “Oh yeah.”

200 I inquire, “Yeah, so what was that experience like? Did you tell the cops what happened?”

She explained how she got into a car accident while exiting 270 to get on Morse

Road. In her first interview, she described the accident this way, “I rear –ended these people so hard, and they rear –ended somebody, and they rear –ended somebody. And we’re talking – these cars are all like Mercedes, Jaguars, these expensive Aston Martin whatever vehicles. And I just felt terrible.”

After she gave up driving, Sable was still haunted by the accident she caused decades ago and takes full responsibility for it. It is an open wound. Since medicine does not efficiently control all the symptoms of narcolepsy, people with narcolepsy are often left to wrestle with the aftermath of accidents on their own.25 Furthermore, researchers claim that the effects of medication on vehicular accidents has not been studied.26 As

Aurora puts it, after she was diagnosed, “There wasn’t any support. The doctor I went to at the time [was like], ‘You have narcolepsy, here are the pills, bye. Hope you stay awake.’ That was it.” The support group helped Aurora, myself and others recognize how not seeing or having access to a specialist who knows about narcolepsy is dangerous.

While Sable sees herself as wholly responsible for the accident, the preponderance of accounts I heard about doctors who treated participants the way Aurora was treated suggests that perhaps they also are culpable in an indirect way. This is not an argument about fiduciary responsibility, rather I would like to call attention to the way medicine is involved in the interaction between place and bodies. Doctors, insurance companies,

201 pharmaceutical products, the transportation industry, and social support networks are all a part of the complicated interaction between people with narcolepsy and their cars.

Napping in the car is one of the ways that sleeping behind the wheel for people with narcolepsy is not dangerous. This issue of napping in the car is dangerous in another capacity. “Sleeping in a vehicle” is shorthand for a type of homelessness, and many cities have laws against sleeping in vehicles.27 Grouse and Sable have told me about being awakened by officers or troupers for napping on the side of the road. When I posted my concerns about this to a nationwide Facebook group, no one had firsthand experience with getting a ticket or citation for these types of naps. Nevertheless, while the act of napping in the car seems simple and harmless, these types of laws have grown since the recession caused many people to move from their foreclosed homes into their cars.28

Sleepiness is not the only aspect of narcolepsy that can make an unwelcomed appearance while behind the wheel, Sable has also experienced cataplexy while driving. For Sable and Aurora, narcolepsy means placing your life and safety in the hands of doctors that may know little to nothing about narcolepsy, and it is here, behind the wheel of a car, where that trust is tested and could be found to be wanting.

Dangerous Cataplexy

Dealing with narcolepsy on their own does not necessarily mean that they are alone, as I learned when I asked, “Did you ever drive with people, like drive people around?”

She uttered, “Mm-hmm (affirmative), yeah.”

202 Surprised, I inquired, “And people who knew you had narcolepsy? Or how did they regard or talk about [it.] How did you talk about your falling asleep in the car with them?” My family and some friends rarely had me do the driving if we were going someplace together—except if they needed a break on a long trip, even this was a risk they rarely took.

Sable assured me, “I would just say, ‘I’m sick. I got to take a nap,’” whatever, but I do remember one time I was driving and I had cataplexy.”

“This was before you were diagnosed?”

She continued, “No, this is after. There’s a park here in town called Snowville, and I was over there by the park, because I love the outdoors, and I saw some deer and I got just tickled by that for some reason. That threw me into this cataplectic attack, before

I was on medications that worked for that for me. The doctor, Dr. Franklin, tried me on so many different medicines. He goes, ‘I’m out of choices now. There’s nothing else to try.’ Nothing worked, not a thing. He was the one that came up with the Prozac, saying it resembles a class of drug they use in Europe for cataplexy, and it works.”

Returning to her story, I queried, “What happened with the cataplexy? How long did that last and what happened?”

She replied, “I would always fall.”

To redirect her to the specific story I interrupt, “Well, for this particular [story]— the deer. You saw the deer and then you lost the complete muscle control, or just you felt it go and come back, or what happened?”

203 She reported, “No, I felt it go, and the girl I was with, she knew about all this stuff. I just said, ‘Cataple-xy,’ and I was able to point at the steering wheel. I got the car to slow down and stop but I couldn’t steer it anymore. She grabbed the wheel and between the two of us we were able to get the car off to the side of the road and all that.

That was probably one of the only times I heard what a cataplexy was actually driving, and that scared me a lot.” I have experienced cataplexy, and can report that she is indicating that she sensed it coming on and had time to tell her friend.

Shocked, I confirm, “Yeah, that is pretty scary.” We talked further about how she was diagnosed with narcolepsy before she started to experience cataplexy.

I asked, “So, when the doctors learned about the cataplexy, did they ever tell you about not driving or suggest that that might not be safe, or did anybody talk to you about driving with cataplexy?”

She confessed, “Yeah, even with the narcolepsy. Both, yeah. They almost took my driving privileges away one time and I fought it like a dodo. You know, ‘Oh, I still want to be Miss Sufficient and go get ‘em, this that and the other; nobody’s going to hold me back.’ I’m glad I finally have come to the understanding that it’s not safe, not only for me, but God forbid I would hurt somebody else.” Despite the remorse she feels, she also admits that her MS and the support of her husband were a big part of giving up driving, adding, “If it were an emergency, I’m sure I would drive, like if Jeff ever got sick and we needed a hospital or something, you know. I can still drive, especially now that I have the use of my left leg. Because my left leg was just ... It was like I didn’t even have a leg for so long because of the MS.”

204 People like Sable have no shortage of scary memories behind the wheel to make the appeal of not driving very apparent, and this includes me. Yet while the probability of experiencing a sleep attack, EDS, cataplexy, sleep paralysis or automatic behavior can be studied using statistics, the lived meaning of this probability depends exists in the way it occupies our memories and stories. For Sable, she did not regard the story of cataplexy with the same level of regret and danger as the sleepiness.

Sable’s story also reveals that communication is central to dealing with the experience and aftermath of driving while experiencing cataplexy, sleepiness, automatic behavior, sleep or sleep paralysis behind the wheel. Another story about communicating about narcolepsy and driving is one of my own stories of driving while sleepy. Automatic behavior refers to continuous behavior without awareness.29 While behind the wheel after

2 a.m., I once “woke up” from an experience of automatic behavior while I was pulling up to a stop light. I remember looking around to figure out where I was. Then I looked in the rear of the car before searching my memory for the last hour of driving. I could not remember driving across Houston at night while I let my sister lay in the back of the van with her boyfriend. I “woke up” because I needed to drop someone off before going home, otherwise I would have stayed in this state automatic behavior until I arrived home. Once aware of myself and my confusion, I spent the rest of the drive trying to figure out what happened. Automatic behavior occurs when a person with narcolepsy is doing something that is very familiar like cooking, cutting vegetables, showering, cleaning, and a part of their brains falls asleep. Before leaving the car to enter the house, I told her what happened, and she has never tried to guilt me into doing a long drive at

205 night again, and I do not think I ever tried sleepily driving across a city after midnight again.

In both my story of experiencing automatic behavior behind the wheel and

Sable’s story of experiencing cataplexy behind the wheel, a friend or family member was involved in creating that situation. We both could communicate about what happened and was supported in one way or another. My sister had to learn about one aspect of narcolepsy by testing the limits put in place around what type of driving I could do.

Perhaps improved patient and family education about narcolepsy would help ensure that the people closest to the person with narcolepsy are also the ones who are least likely to encourage dangerous choices.

The Isolated Narcoleptic

Why did Sable continue to drive after experiencing cataplexy and sleep while driving? Was she being a dodo, as she claimed or was something else going on? Rather than making claims about causal or influential factors, it is more useful to examine her story to see what she was able to accomplish with driving. As a person who was awarded disability retirement before the age of 30, Sable did not need transportation to go to and from work everyday. In addition to the themes about the how narcolepsy made driving dangerous, I found that Sable’s interview included themes about how driving was a source of freedom in a life that has been curtailed by narcolepsy and eventually MS.

As discussed in her diagnosis story, being diagnosed with narcolepsy meant leaving sources of connection and support in the form of a sorority that did not take narcolepsy seriously. Sable was not the only person who sought to move beyond the

206 isolation that narcolepsy can impose. Jane’s invitations to talk and hang out and my willingness to accept them both reflect how life with a dearth of energy can be an isolated life. By far, the most socially isolated person I met in this project was also the one whose profession most resembles my own, Grouse. A librarian at a local university, Grouse was reticent about talking to his family about his narcolepsy, and when I asked if he had someone he could call on during a medical emergency, he mentioned that he could ask people at the university before admitting that, as he put it, “I’m extremely socially isolated.” As I discussed in Chapter 5, when all the sparse energy and alertness a narcoleptic has goes to work, it can leave very little for anything else. This contributes to a sense of isolation that driving can help alleviate. The themes about the life-sustaining meaning of driving cluster around what Sable was able to do as a person who drove, her resistance to giving up driving, and the impact of accidents on her attitude towards driving.

Driving to Support and to be Supported

Early in our interview, amidst the talk of crashes and regret, I asked why she kept driving. She explained briefly, “Because I loved it. I liked being self-sufficient. I was always a strong person and I never relied on anybody else. I was a self-maker, self- sufficient.” She continued, “Now I do feel like I am relying on somebody. He doesn’t mind it. It doesn’t seem like it.” Towards the end of our interview, I asked, “So how would your life have been different if you gave up driving at a much younger age? . . .

Let’s say if you gave up driving that year after you had the cataplexy attack behind the wheel, how would your life have been different? What do you think would be different?”

207 This is a rewording of a question I ask everyone in the second interview. However, instead of asking what life would be like if she never returned to driving, I had to come up with another way to find out what this space means in terms of what would be missing if it was not a part of her life.

It took a few attempts to rephrase the question before Sable had a clear sense of what I was asking. She mused, “Wow. It would be completely different, completely different, I think. Something just dropped out of my head. I don’t know what I was about to talk about. Hit me one more time with the question.” This used to happen to me a lot.

Only when I see it as text do I fully appreciate her turn of phrase, “something just dropped out of my head” because it reflects how these memory snafus feel.

After I repeat the question, she corrects me, “Well that wasn’t an accident, I think, because like I said, the girl knew”

I jump in and clarify, “I just had to pick, arbitrarily, a time period, so that you can think back and think about the role driving had in your life and how things might be different if you weren’t the driver.”

Sable revealed, “Well, if I wasn’t a driver I wouldn’t have been able to go to as many places and things as I would go to if I were driving. I would have missed out on some things, probably, so to speak.” This was true in one sense, however I told her how I recently spent time with Jane, who had been getting around without a personal vehicle for some time. Jane was now dealing with a car that does not work, and despite the lack of transportation, she manages to keep herself very busy and goes many places. I

208 clarified, “So if you could get around, if you put that aside, how else would it be different?”

She started back in, “I wouldn’t have been ... I’m just trying to think. I probably wouldn’t have gotten the narcolepsy support groups together.”

In confirmation, I say, “Okay.”

Continuing, she stated, “I never would have met Nancy. I would just be confined to my home, for the most part, I think, at that point in time of my life.” In other words, if she gave up driving at an earlier point, as she said, I would not have met her because the support group that Nancy and Sable ran eventually became the one I came to join.

While this type of speculation lacks the type of descriptive function more pragmatic questions provide, it does allow me to witness how she deals with a challenge.

Driving, as it turns out, is a major tool she has used to help cope with narcolepsy, and that realization poses a significant dilemma for people with narcolepsy. My own travels to and from Columbus for my doctor’s appointments, dissertation research interviews, and participation in the support group are all similarly confounding. This is because driving is clearly a means to enhancing my capacity to understand and manage narcolepsy.

Sable’s story and discussion of giving up driving includes several intimate relationships—her husband, the co-worker, Nancy, and her friend that took the wheel during a cataplexy attack. While driving and sleep are often discussed as if people were disconnected from relationships that facilitate, accompany and/or impinge on these activities, relationships are central to developing safe and healthy habits around driving and sleeping. Sable’s companionship—in the form of her husband—supported her

209 eventual decision to give up driving while her need for friendship and belonging is offered as one of the main reasons she resisted the idea of giving up her “driving privileges.”

Continuing to interrogate Sable’s imagination, I posed a question about what narcolepsy would mean if the issue of driving was not a part of living with it. I was surprised to hear that the dilemmas of driving with narcolepsy were so central to her understanding of how this medical condition places limits on people. This unanticipated recognition likely reflects my position as a person who came to know about narcolepsy before learning to drive, and my own experiences of growing up, going to college and to graduate school where long drives and long commutes were things I could easily avoid.

Hearing Sable return to her conviction that people with narcolepsy should stop driving, I probed this by asking her to consider, “If let’s say 5 years from now most people with narcolepsy avoid driving, either because of legal reasons or because of other reasons, how would your understanding of narcolepsy change in that context, if it wasn’t a thing, if people”

She interrupts and asks, “If people were made to give up driving?”

I reply, “Well, if that just wasn’t an aspect of narcolepsy because it was easier. I don’t know, let’s say there could be a number of reasons why people end up not driving.

But if that wasn’t an aspect of narcolepsy, how would you think of it? What would you think of narcolepsy then?”

To this, she said, “It wouldn’t be near as bad. That’s one of the big, big things is my driving with the narcolepsy, I felt.” She looked at me to see if I knew what she meant

210 before continuing, “Every time I drove, I knew it was a little dangerous, probably, because I don’t know when I’m going to fall asleep. If I can fall asleep standing up, it just happens. I can’t control it. I don’t know if all narcoleptics are to that degree or not.”

Her answer seems to downplay the role of medication in treating narcolepsy and making the task of driving a safer proposition. If I put that consideration aside and regard this description of the most disabling dimension of narcolepsy again, I am struck by the simplicity in this assessment of narcolepsy. Yet, its simplicity does not diminish the condition’s widespread effects on quality of life. Rather than taking Sable’s statement too literally, I am inclined to regard her reply as a hybrid of literal and metaphorical understanding of narcolepsy. Even as such, it communicates about limits narcolepsy creates and makes a compelling need for support and understanding seem no more complicated than a lift to the store.

Anything to Keep a Driver’s License

Returning now to Sable’s memories of driving with narcolepsy, her love of driving and her commitment to driving is best illustrated in her story of what happened after the first car crash she told me about. I asked, “So did you ever get a ticket, or did you ever feel like you’d get [one]? Because when you got in these car accidents, you got a ticket, or did you?”

“Oh yeah” she snapped.

I query, “Yeah, so what was that experience like? Did you tell the cops what happened?”

211 Sable recounts, “I would usually make up some other story. Like the one I was telling you: I was getting off the exit ramp of 270 to get to Morse Road, and I just was fooling with my stereo I think or something. My eyes were off the road for a second and that’s how I ended up rear-ending this person.”

Considering this I said, “So you did say that to hide the narcolepsy or hide falling asleep? Because, you know, a lot of people fall asleep. They may not always tell the cop, but they are either undiagnosed or they had avoided sleep for one reason or another.”

Since many people’s ability to report if they are asleep or awake is impaired when they are on the cusp of sleep and wakefulness, these self-reports and fibs should not be taken too seriously.30

More to the point, her previous willingness to lie to keep her license reveals how dramatic her current position on the topic is from the stance she once took. While demonstrating how malleable such convictions can be as time unfolds, it also demonstrates that a younger Sable was willing to invite other types of risk for the sake of maintaining her driving privileges. Eventually, Sable started to carpool to work with a co- worker, and the role of her husband could also contribute to her choices around driving.

As her MS worsened, driving also became less tenable, but once she regained movement in her legs, she did not seek to return to driving. Perhaps it was the way her life forced her to abandon driving that showed her how to live in Columbus without driving.

A couple of my participants brought up the question that is asked when you go to get a driver’s license in Ohio. They ask if you have a condition that causes periods of unconsciousness. Cameron said that when she was diagnosed that was one of the first

212 things she thought about. She feared losing her drivers license and still worries about and thinks that she cannot tell people about her narcolepsy. Narcolepsy is very different from epilepsy, in which states may require people to prove they are seizure-free or that medication controls them before being given a permit to drive. And there are reports that this is unwarranted because people with epilepsy have a crash rate that is half the rate of non-epileptic drivers.31 While Cameron’s fear of losing her driving privileges may never come to pass, these types of stories make me wonder what I would be willing to do to keep my driving privileges.

Conclusion

Although I was literally in the driver’s seat and, as the interviewer, I was also metaphorically in the driver’s seat, this interview is different from the rest of the interviews in the extent to which I am Sable’s passenger in the journey through this space. While I am very familiar with the dilemmas of driving while sleepy, as a person who was diagnosed with narcolepsy before getting a driver’s license at the age of 16, the risk of falling asleep at the wheel was always intertwined. In other words, I have always approached driving aware of the unique dangers driving posed for people with narcolepsy and therefore was always able to proactively manage this risk with the help of others, through planning, or through finding other methods of transportation. My family played a big role in my managing the risk of falling asleep at the wheel by not having me drive long distances alone or at all.

It wasn’t until 2005 when I needed to evacuate New Orleans ahead of Hurricane

Katrina that I did my first interstate drive—just barely.32 The freeway was so congested

213 that most of the exodus was at a 30-40 mph bumper to bumper traffic as most of the drivers in the largest city in Louisiana headed for higher ground. Six hours later, instead of being in Houston I was in Orange, Texas—the first Texas city on I-10 westbound. I called my dad to find out where he ended up going and to let him know that I was able to get the last hotel room in the little motel off the freeway. I was so happy and proud of myself. At the age of 24, this was the first time I drove for so long. Driving long distances has always been a dangerous proposition but one that I have accepted more and more since this first adventure.

My family’s willingness to do the driving is not unlike the co-worker who Sable was able to carpool with and her loving husband who is glad to do the driving. Future studies on how people with disabilities handle personal transportation uncertainties should explore the role relationships and resources play. In her second interview, she began by denouncing this choice to keep driving, but towards the end of the conversation she reflected on the vital role driving played in her life.

Greater understanding of narcolepsy may lead to greater access to social resources like carpooling, family and friends who will offer rides, and virtual options for attendance, thereby providing more social involvement options for people who are at a higher risk of falling asleep behind the wheel. Marketers and engineers who are developing driverless cars should consider targeting people with narcolepsy and others with similar conditions.

I also would like to point out that Sable did not rely on driving to sustain employment like most of the people in my study. This makes her story and her choice to

214 not drive incomparable to those who rely on commutes or live alone. Penny, for example, found that she was falling asleep while driving to training in the morning but felt, “I have to get there. I didn’t have another option; you don’t get sick days from your clinical practicum. You go, or you don’t graduate.” This was prior to her diagnosis and she managed the 20-minute commute because upon falling sleep the rumble strips on the side of the road would wake her up at least once a week. For many people, their ability to maintain health insurance is contingent on their ability to manage the commute and get to work.

Some of Sable’s stories around driving with narcolepsy take place in a world prior to when the seat belt violations became subject to primary enforcement, meaning police officers could pull over cars and issue tickets. While it became illegal to drive without a seatbelt in the 1960’s, attitudes around seat belts had not changed until the 1980s and

1990s when people could get a ticket for not wearing one.33 Attitudes around the risk of driving drunk have also changed dramatically over the last few decades aided by the way laws were enforced.34 One of the major goals of Arianna Huffington’s Sleep Revolution, which refers to her book and her efforts to change attitudes about sleep, includes the goal of making driving while drowsy as stigmatized as driving while drunk.35 While I support this goal in spirit, I cannot support the further stigmatization of people with narcolepsy, who are already highly stigmatized. Instead of punitive measures, each person with narcolepsy should have a surplus of eager and willing drivers in the form of co-workers, family members, friends, neighbors, public transit systems, taxis and Uber-like options for dealing with the ways they get around. However, in the today’s world, narcolepsy is

215 isolating and efforts to communicate about it more often than not fail to foster relationships with altruism, much less empathy. Nevertheless, the meaning of narcoleptic symptoms, in the car and beyond, is tied to the particular resources people have and the roles a person is expected to fulfill. As such, the meaning of narcolepsy is a patchwork of meanings even in this site where the consequences of sleepiness might run the highest.

After my interview with Sable, she showed me a collage she made with the earlier support group (See Figure 6). Like this collage, the meanings are pieced together based on what is available, and in the end, the patchwork still looks a bit scary.

Figure 6. Sable's collage on narcolepsy. She made when she was a part of the other sleep disorder support group.

216 Chapter 7 Notes

1 Philip et al., “Maintenance of Wakefulness Test Scores and Driving Performance in Sleep Disorder Patients and Controls.,” 973; Phillips and Sagberg, “Road Accidents Caused by Sleepy Drivers: Update of a Norwegian Survey. [Abstract],” 138. 2 Mets, Alford, and Verster, “Sleep Specialists’ Opinion on Sleep Disorders and Fitness to Drive a Car: The Necessity of Continued Education.,” 499; Philip et al., “Sleep Disorders and Accidental Risk in a Large Group of Regular Registered Highway Drivers. [Abstract],” 973; Donjacour, Mets, and Verster, “Narcolepsy, Driving and Traffic Safety,” 220. 3 Trotter, “Narcoleptic Driver Causes Concern for Ellsworth Police”; Fitzsimmons, “Engineer in Hoboken Train Crash Had Undiagnosed Sleep Disorder, Lawyer Says.”; Using the NewsSource database, which accesses 40 national and international news papers and over 400 regional news papers I was only able to find Trotter’s piece that reports on a women who is a nuisance to residents because she has often been found napping on the side of the road in her car. Only other news story about narcoleptics crashing vehicles is Fitzsimmons article on a person who caused a train crash and was later diagnosed with narcolepsy. These were to only two that did more than “suspect” narcolepsy and even these stories were rare. 4 National Sleep Foundation, “2012 Sleep in America Poll: Planes, Trains and Automobiles,” 56. This national poll focused on people who drive as a profession and when asked if they drove off the job while drowsy in the last month 8 out of 10 admitted to having driven while drowsy while not working. 5 National Sleep Foundation, “Facts and Stats: Drowsy Driving – Stay Alert, Arrive Alive.” 6 Dement, The Promise of Sleep: A Pioneer in Sleep Medicine Explores the Vital Connection between Health, Happiness, and a Good Night’s Sleep, 81. Dement notes that people incorrectly assume that the afternoon lull is because of lunch when, “In reality, people are feeling their accumulated sleep debt. . . . In many cultures, people cope with this early-afternoon dip by retiring immediately after lunch for an afternoon nap.” 7 Coren, Sleep Thieves: An Eye-Opening Exploration into the Science and Myteries of Sleep, 185. 8 Potenza, “The End of America’s Car Culture? Once a Symbol of the American Dream and Young Adulthood, Cars Seem to Be Losing Some of Their Appeal,” 10. In his magazine article he shows that in 1983 73% of youth between the ages of 16 and 19 received a driver’s license and in 2011 50.9% of youth between the ages of 16 and 19 are getting a driver’s license. 9 Ibid., 11. 10 Lezotte, “Women Auto Know: Automotive Knowledge, Auto Activism, and Women’s Online Car Advice,” 692. Her essay argues that the internet offers a way for women to learn more about cars and car culture to become more informed consumers, engaged drivers and better negotiators in male dominated domains like car sales.

217

11 Julian, “‘I Love Driving’: Alternative Constructions of Hmong Femininity in the West.,” 30. 12 Ibid. 13 Pachana et al., “To Be or Not to Be (an Older Driver),” 1. 14 The Associated Press, “Court Overturns Law That Bans People from Sleeping in Cars”; Cohen, “The Trendiest Law in America May Be a Ban on Sleeping in Cars.” 15 Lee and Molnar, “Driving and Dementia. [Abstract],” 27. 16 Johnson, “Brave New Road,” 30. 17 Laderman, Driving Visions, 9. 18 Ibid., 17. 19 Onion, “Driving off into the Sunset: The California Street-Racing and the Mobile-DJ Scenes,” 275. 20 Loewit-Phillips and Goldbas, “Mothers Against Drunk Driving (MADD): History and Impact.,” 62; Chaudhry, “World Day of Remembrance (November 19).” 21 Bijsterveld et al., Sound and Safe: A History of Listening behind the Wheel, 1–2. This book is about the transformation of vehicles into “mobile listening booths.” 22 Fleetwood, “Public Health, Ethics, and Autonomous Vehicles.” 23 Donjacour, Mets, and Verster, “Narcolepsy, Driving and Traffic Safety,” 219. 24 Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 81. 25 Bayon, Léger, and Philip, “Socio-Professional Handicap and Accidental Risk in Patients with Hypersomnias of Central Origin.,” 421. Their study found that, “medical treatment does not seem to be completely efficient and physicians should pay more attention to the education, work, life and social environment of their patients.” They also argue that in hypersomnia conditions like narcolepsy, sleepiness is far more handicapping than cataplexy although few studies examine this. 26 Ibid. 27 Cohen, “The Trendiest Law in America May Be a Ban on Sleeping in Cars”; The Associated Press, “Court Overturns Law That Bans People from Sleeping in Cars.” 28 The Associated Press, “Court Overturns Law That Bans People from Sleeping in Cars.” 29 Morandin and Bruck, “Understanding Automatic Behavior in Narcolepsy,” 1. 30 Schutz et al., “Intra-Night Sleep Perception in Patients with Sleep Disorders,” 47. People who are asleep or transitioning between sleep and wakefulness frequently misreport the state they were in when awoken and asked. People with sleep disorders have an even lower rate of correctly perceiving and reporting their state. 31 Epilepsy Foundation, “Driving and Epilepsy - a Study Regarding Car Accidents and Seizure as Cause.” 32 Eugene, “Working While Narcoleptic,” 160–61; Eugene, “Bridges of Katrina,” 1507– 8. 33 Insurance Institute for Highway Safety, “Safety Belts.” 34 Loewit-Phillips and Goldbas, “Mothers Against Drunk Driving (MADD): History and Impact.,” 62.

218

35 Huffington, The Sleep Revolution, 31. Huffington criticizes the tendency to applaud sleep deprivation as a badge of honor in the workplace when, “the effects of sleeplessness are largely the same as those being drunk.” She goes on to say that it is endangering ourselves and others. Her book notably has two pages devoted to the topic of sleep disorders.

219 Chapter 8: Active with Narcolepsy

This chapter follows me during my time with Cynthia, first at her place of work, then at a ballet studio, before ending with reflections on seeing her perform with the dance company. Her story of narcolepsy highlights what it is like to have narcolepsy while in a community and space devoted to being physically active. For Cynthia, who is

42 and unmarried, dancing is a place where she is free from most of the ways sleepiness limits. Cynthia’s history and commitment to dancing and her belonging to a dance community socially construct the meaning of her narcolepsy in the context of dancing.

The chapter concludes by exploring other relationships to being physically active and narcolepsy before reflecting on how these stories shed light on the research questions.

z z z z z

During the meeting where I met most of the interviewees in this project, one woman arrived much later than the rest of the latecomers like myself. When she has a chance to speak, she explains to the group how she was determined to make it. I learn that her name is Cynthia, and eventually I sent her a text message to schedule a meeting with her. She suggests that we meet at her office, and after giving me the address, she texted, “And I suppose I should mention that I work at a funeral home. Please let me know if you think that being there will feel in anyway uncomfortable or disturbing for you?” I was not uncomfortable or disturbed before nor during my time there; rather, I thought this would be a great way to introduce Cynthia because I found it charming in an odd way.

220 I reply “thanks for the heads up. Yes, I will be okay,” before adding, “That was funny.” To explain what I thought was funny I text, “I look forward to hearing about the more memorable responses to that disclosure.”

A month after initially meeting Cynthia, I am the one running late from navigating rush hour with a GPS app I have begun to distrust. I pull up to the funeral home where she works and spot a woman waving to me. I try the door and discover it is locked. I am unsure about this person walking towards the glass doors to let me in. Then I see her hazel eyes and am reassured that this is Cynthia. She lost a lot of weight since I met her.

Many months later, I will also lose 20 pounds in the course of a month because of a medication change. Later, when she brings me back to these darkly tinted glass doors, she steps outside and I see hints of blue in her eyes. Delighted, I said, “Do your eyes change color?” Smiling, she tells me about how they sometimes change with the seasons, weather, and/or the lighting. Eyes like that are rare on African Americans.

She is with clients, members of a Black family who came to see the body or for a viewing—which I presume was in the nearby room. They are in the process of expressing their appreciation for the work, saying how good a job the funeral home did. I try to mirror Cynthia to find the right way to act in this unexpected scene. These are the family members of someone who passed away, and all I can do is wait and mirror Cynthia’s relaxed smile and serious eyes. She is wearing a dark dress with a pearl collar that meets her neck. Cynthia is in the process of walking the family to the door—but this isn’t as simple as it sounds. The meaning of this day and moment is so big for these strangers; and yet it means something entirely different for Cynthia, who works at this funeral home,

221 and yet something different to me. As I stand beside Cynthia, a woman shakes Cynthia’s hand and tells me how good a job Cynthia is doing. I offer a subtle nod in agreement.

When she has finished gently corralling the mourners, Cynthia shows me to her office where I set up and wait until she finishes with the people and work she must tend to. I am left to play candy crush and get the computer and out to record.

Only now, as I write this, do I marvel at her performance. I suspect that the right attitude and the appropriate mix of patience and urgency is needed when hosting family members and loved ones. In any job, there is an emotional repertoire one must be able to express and endure, and I have difficulty imagining the repertoire she must master.

After the forms and explanations, we start the interview with me saying, “Alright, now tell me about your diagnosis story.”

I am sitting at a table that is a hybrid of a conference table and a desk. On one end of the table is Cynthia’s desk. This is where she would talk with family members about funeral arrangements. Sitting on the other side of desk, she tells me, “Okay – so about roughly 15 years ago—early 2000s—I really don’t remember how I came to go to a sleep doctor, but I was basically diagnosed with narcolepsy.” She goes on to say, “At that point the doctor kind of explained to me what that meant, and I was told at that time that the only medicine that was available to treat it was Provigil. So that’s what I was prescribed. I took the Provigil for maybe a couple of weeks and I just really had really bad reactions to it.” Cynthia has narcolepsy without cataplexy and suspects that she has had it since being a young child.

222 As someone who just discovered that a year of mysterious pain was a side effect of my medication’s interaction with caffeine, I was very curious about her side effects. I probed, “Okay—do you remember what they were?”

She adds, “It just really made me feel jittery and almost – looking back on it now

I probably was experiencing anxiety.” Then she explains how her doctor was not very helpful, “He was just basically like ‘It is what it is and there is no cure for it’. Take this medicine or don’t take it.’” So, she stopped taking Provigil and tried to deal with narcolepsy without medicine. Two years ago she started to experience different symptoms. She explains, “I started having other symptoms that I didn’t even associate with narcolepsy. I was having the really, really bad memory loss, insomnia so I was thinking like: If I have narcolepsy how could I be having insomnia?” She changed sleep doctors, and this new doctor diagnosed her with sleep apnea and narcolepsy, and she started on the CPAP machine for sleep apnea. She went back to the first doctor to see if they were able to help. It was the counselor she sees for depression who recommended finding a support group which led to her discovering the group on Facebook.

Describing her first meeting, she relates, “So, the first time—I don’t know if it was the first time I went or the second time I went—well, the first time I went I think I left like really excited because I was hearing other people talk and tell their stories, and I was like, okay – I’m not crazy. And then the second time I went I was a little bit more vocal about my own situation, and I was like in tears and just breaking down crying the whole time. And so going to that meeting – a lot of the people there had had my sleep doctor, the sleep doctor I’d had before and they were like, ‘Get away from him. He’s bad

223 news.’” Cynthia listened and found another doctor. The group also was very enthusiastic about Sodium oxybate (Xyrem) —which she had never heard of. Eventually she asked to be prescribed Sodium oxybate (Xyrem). On Xyrem she started to see major improvements in issues with brain fog and concentration, but as a person with high blood pressure she also started to experience a lot of dizziness. She concludes her account by saying, “So, I have had definitely two visits with this new doctor and I’m going to see him again in July.

But basically, I’m just still trying to manage it the best I can and not really doing a good job at it. That’s about it.”

At this I ask, “So, why do you think you’re not doing a good job?

She explains, “Because the whole morning thing.” Cynthia, like many people with narcolepsy, has trouble transitioning from sleep to wakefulness in the morning. Since her dad is her boss, she has been able to remain employed, but getting up and getting places in the morning has been a major issue for her. She points out, “Like today I didn’t have one so I just had to be here at 9:00 a.m. I got here at noon.” She pauses before adding,

“So that’s really my biggest obstacle is trying to pull myself up and out of bed and get moving in the morning. The loss of time, even here working; before I know it something that should have taken me maybe 20 or 30 minutes to do, three hours has gone by and

I’m still doing the same thing.” This is where excessive daytime sleepiness creeps in and takes little pieces of life in the form of not showing up, poor memory, poor concentration and poor performance.

She goes on to tell me about the headaches she is having with Armodafinil

(Nuvigil). I offer, “Okay, yeah – there are side effects and that’s specifically the main

224 one. Some of the times I can nap off some of my headaches.” Before moving on to other questions, I want to make sure I understand her story, so I say, “This is what I’m hearing; so you were diagnosed a long time ago, but there has not been a lot of treatment, and you haven’t found the right treatment, and your relationship with doctors and medicine has not proven to be as beneficial as you were hoping it to be. You’re still hanging in there – does that sound about right?”

Cynthia’s reply is, “Yeah – that’s pretty much it.”

Later in the interview, she tells me how the funeral business is a family business and her father is the second generation of family owners. In college, she studied electrical engineering but she has been working in the family business since finishing school. He hopes to pass the business to Cynthia but, as she put it, “I just don’t feel that

I’m ready to take it on. And it’s mainly because of me like being tired and being – like I can’t stay on top of all the responsibilities and remembering everything that has to be done.” This has gotten worse since her mother passed away 13 years ago since she took on all her mother’s possessions but hasn’t been able to get her house in order because everything is so overwhelming. She continues, “I tend to focus more on work, my personal life, and my home life, and all of that suffers because I can’t focus on all of these things and get all of these things done.” Cynthia is able to go to her parents’ house if she needs a nap during the day. While Cynthia’s dad recognizes her need for naps to manage her condition, Cynthia’s stepmother does not and tends to wake her up from naps to do things. Both her work and her home responsibilities leave Cynthia drained and depleted, which is part of the reason dancing means so much to her.

225 I asked, “So, tell me about the dancing. Do you see narcolepsy appear when you are in that kind of an environment or is that a narcolepsy-free zone?”

She tells me that, “99 percent of the time it’s a narcolepsy-free zone. Well, I take that back. It used to always be a narcolepsy-free zone.” To talk more about her narcolepsy-free zone we agree to meet at the studio where she dances.

Controlling the Body and Losing the Body

Before continuing with Cynthia’s story, I would like to introduce the theoretical lens I am using to understand Cynthia’s experience. Berger and Luckman’s, The Social

Construction of Reality approaches the idea of reality as a question of how subjective experiences become objective facts1. In other words, how does the subjective experience of narcolepsy—a questioned and complex condition that disfigures a hidden and often underacknowledged physiological process of sleep and wakefulness—become real for non-narcoleptics. In other words, social construction allows us to examine how narcolepsy is rendered external through and therefore able to be incorporated into how people see narcolepsy despite all the ways it is hidden.

Life with a condition like narcolepsy means that the struggles and needs we have are often silenced because we are too often surrounded by people who are not able to understand the nature of the condition and its symptoms. My earlier chapters discussed the many ways in which people with narcolepsy must figure out how to deal with excessive daytime sleepiness at work, at home, and behind the wheel. While Sable found help and support for her need for transportation and found understanding in the support

226 group she started with Nancy, the quest for support and understanding is unending for most of my interviewees.

The absence of people who understand and empathize with the experience of living with narcolepsy became a familiar fixture in my life. It eventually became an accepted aspect of everyday life such that when I was first offered an empathetic comment about life with narcolepsy from someone who did not have it, I was moved to tears. Twenty years of talking about narcolepsy taught me that it tended to be regarded as some sort of mental illness, an excuse for being lazy, a weird illness, or as a taboo topic for conversation—it is rarely regarded by others as a disability, a horribly limiting health condition, and a source of constant frustration and curiosity. Over time, people who spend time with a person like me may come to learn such truths about narcolepsy. But meanwhile the available information about the condition fails to communicate what narcolepsy means in everyday life, and in turn these interactions socially construct the condition as hidden and suspect. These experiences compound to work to socially construct the meaning of narcolepsy in everyday life. Since socially constructed realities are fragile by nature2 and vulnerable to breaches, when somebody acknowledged that they could see what narcolepsy means in my everyday life, it breached my sense of reality, and I was, for a moment, not alone in my understanding of my life. In a sense, this also happens for Cynthia at her dance company; when she falls she is embraced by people who are able to truly see narcolepsy and the limits it puts on her life and hopes.

To be clear, narcolepsy is not a contested illness (for example, like post-traumatic stress disorder, multiple chemical sensitivity, and chronic fatigue syndrome) in the sense

227 that the etiology, physiopathology, treatment, and effects of narcolepsy have been thoroughly studied and are not in dispute within medical discourses.3 Rather, it is a rare condition and therefore similar to contested illnesses in the way in which people with narcolepsy struggle to explain their symptoms to doctors and others.4 Another point of similarity is in the way people with narcolepsy may be are treated as if their condition has a moral or psychological basis.5 People with rare conditions frequently do not have their everyday needs met, and this impacts their participation in areas of everyday life and much of this is because of contextual barrier factors.6 Consequently, the goal of my ethnographic descriptions of conversations and narratives of people with narcolepsy is to provide rich descriptions of the nature of these barriers and to create evocative accounts of how they are dealt with. Accordingly, this chapter provides accounts in which narcolepsy symptoms occur in a context where symptoms were experienced, but instead of finding barriers and resistance, Cynthia found support in dealing with the consequences of literally falling.

In Cynthia’s story and in the stories of others I have interviewed, the dialectic of controlling the body and losing the body emerge. Nowhere is this dialectic clearer than in the realm of being committed to being physically active. Cynthia’s lifelong involvement with dance requires assiduous control over her body, and yet narcolepsy creates the need for this type of leisure while also impinging on it. When her dance instructor sees

Cynthia’s struggle for control over her body, the silent struggle of living with narcolepsy is revealed. Finally, someone sees Cynthia as a person who is struggling to control her body, and a rare moment of empathy occurs because she is in a community of people

228 who also are struggling to master their bodies. After describing the themes that emerged during my interpretive phenomenological analysis of our interview discourse, I will discuss my experience of attending the production of the ballet company and discuss how the story of The Wonderful Wizard of OZ sheds light on the social construction of narcolepsy.

Controlling the Body

I arrive to the dance studio at 6:26; finally on time. Cynthia meets me in the lobby and I ask for a tour. The building smells of new maple wood doors and new industrial carpet. Large windows are cut into the studio walls so we can see through to the studio where people in one studio are stretching and chatting before a class. Most people there are white women between the ages of 25 and 50, but there are a few people who fall outside of that demographic in terms of race, age, and gender. I am impressed with the exposed air conditioning ducts that allow for the high ceiling. She tells me about The

Wonderful Wizard of OZ ballet that they are working on putting together. As she shows me where the woman’s bathroom is, I fail to register it as a possible dressing and changing room.

The building is wheelchair accessible with a ramp leading us to the back door.

We head out to find a place to chat.

I mention the drops of moisture I feel while Cynthia and I set up three folding chairs between the cars out back near a handicap parking spot and the loading zone. We face two residential garages and two attached houses facing the nearby residential

229 streets. We chat for several minutes before I turn to the topic at hand, “Why do you think it’s a narcolepsy free zone?”

Looking up towards the sky and the trees shading us and the nearby building, she first says “hh-mmm,” before tentatively starting, “I think it’s a narcolepsy free zone again because it’s my way to, even though I’m physically moving, it’s still a form of relaxation for me. It’s my way to decompress from the day, to burn off energy and stress.” Using her hand to get something out of her eye, she continues, “I can tell when

I’ve been more sleep deprived than usual, I can tell it in my dancing and it actually works in the alternate way. If I haven’t come to dance, like if I get really busy at work and I can’t get away to come to classes and I go more than a week or so without dancing, I can tell in my mood,” gesturing to the building.

For clarity, I ask, “Tell me what do you mean.”

Sitting with her legs crossed with her phone perched on her leg, she goes on to explain, “If I’m busy at work. Usually most of my classes, they’re here in the evening, but if there’s for some reason that I have to work late or something and I miss class.”

Then I say, “Okay, so you say during the day at work, your mood feels different.

You feel like what? What is it like?” Cynthia nods at me and hums in agreement.

Cynthia offers, “It’s just kinda,” lifting her hands and shaking them in to communicate tension, “more, I don’t know. More tense.”

Dancing helps manage her stress and like most exercise it brings a number of benefits. As I continued to talk about her relationship to dancing, I learn that she has been dancing since she was 3-years old. While many people in her family are creative,

230 since she never pursued dance professionally, some people have wondered why she would put so much time into it.

This reminds me to ask her about the downside of this place, “So, is there anything you don’t like about this place or that worries you or creates any kind of anxiety?”

She starts, “There’s nothing about this place per se-”

Then I add, “Or dancing.”

Replying, she explains, “Yeah. That worries me or gives me anxiety. I do get frustrated with myself when I don’t execute things the way I should,” putting emphasis on the word “should.”

Nudging her forward I say, “mm-hhmm, like, give me an example”

Tentatively she starts, “Just certain things, like certain movements that I think—

I’m hard on myself because of the fact that I’ve been dancing for so long, and I feel like I should be a professional at it or something,” She is chuckling at herself.

Recognizing humor in talking about being self-conscious, I add, “Or that your body is—Are you comparing yourself? Because this, talking about how long you did it, are you comparing yourself to the past?” This was something I saw a lot of people with narcolepsy doing: Comparing ourselves to the pre-narcolepsy person.

Cynthia admits, “Yes. Yes, and I try not to do that. I think I did it a lot more. I think I’ve gotten a lot better about not doing it, but yes. I would really, really compare myself to the 18-year-old me,” laughing she goes on, “versus the 42-year-old me, and

231 then that’s another part where the narcolepsy creeps in is because I can’t—she might say, ‘Here do this,’ and I can’t pick it up as fast and retain the combination.”

This is where my two dance classes in college should start to come in handy. I let her know I follow and know what a “combination” means, saying, “Like remember the four things that you’re supposed to do.”

Today the dance instructor was teaching Cynthia the solo for her role as the Lion in The Wonderful Wizard of OZ. They recorded it so Cynthia can spend more time learning it while at home since she is prone to memory lapses. This issue of getting more time to learn prompts me to ask, “But, the classroom environment, how is that different from other ways of learning?”

This line of questions leads Cynthia to paint a vivid picture of dancing as a form of physical activity that emphasizes nuanced control over the body for a sustained amount of time. The picture she paints is later put in contrast to her story of losing control of her body because of medication side effects.

Answering my question about learning, she says, “I don’t know, I think it’s probably—and again, I think this varies. I’m sorry.”

I try to reassure her, “It’s fine.”

She adds, “This varies with the culture of the studio. This studio is relatively relaxed compared to some other ballet studios where they’re doing classical instruction, they’re very strict, they’re very rigid.”

Curious, I probe, “Yeah, tell me about it; what does that mean?”

232 “If you’re taking classical ballet classes, a lot of times there might be a dress code. We were just talking about that because we wanted to”

Jumping in, I exclaim, “Oh, like wearing the same outfit or you have to buy their outfit and wear it.”

She continues, “Yeah like leotard, tights. The studio that I grew up in as a child, everybody had to wear black leotard, pink tights, pink ballet shoes. Hair pulled back in a bun, no what my teacher called ‘junk clothes’. So, no t-shirts, no legwarmers, nothing extra. Just leotard and tights and ballet shoes. Here, she’s not like that. You can basically wear whatever you want. There’s different degrees just depending on the culture of the studio where you are. Then the same thing with the discipline as far as the studio I grew up in, you stood a certain way. If you were in the middle of receiving instruction, there was a certain way you had to stand or if you had to sit down, there was a certain way you had to sit.”

“It’s just T stand?” recalling something from my 5-year old dance classes.

“Yeah like we had to stand in B plus.” My face shows my ignorance, so Cynthia gets up and shows me the B-plus pose—which is way more elaborate than the simple T- stand or first position. Her hands are out to her sides a foot or so from the waist; her weight is on her right foot while her left foot taps the ground behind her and rests there in a tense yet elegant pose. Adding, “like this—the whole time.”

“Oh, wow” I remark.

She continues, “We couldn’t just be like—If you’re standing there on the side of the classroom and she, the teacher is showing you something, you were standing like

233 this.” Now returning to her seat she continues, “If you had to sit down, you had to sit

Indian style, with your legs crossed and very straight up and down and your hands resting on your knees and that’s always, just like with the military, you’re always standing at attention or at ease; we were always standing at attention.” It is very different at this studio where, as she says, “here it’s very much more laid back.”

Returning, at first, to the description of more rigid dance environments, she recalls, “You couldn’t talk without being recognized by the instructor. Well here, at least for the adults, she’s dealing with grown women so she very rarely—now if there gets to be too much side conversation in class, she’ll be like, ‘Okay you guys need to be quiet.’”

I chime in, “Yeah, like I can’t hear myself. “

She confides, “But other than that, people speak out and say things. It’s funny because you can always tell the people who grew up with classes with training versus people who are new to dance because they’re more like, ‘hey!’ Just talking.”

To show I understand, I add, “Because they don’t have the frame of reference that this is liberal, we can’t push this. Just because we can talk doesn’t mean.” I continue to think about the picture of dancing as the meticulous control of the body and share some of my thoughts, “Yeah, I see. That is so interesting. I can’t help but think about that, because the picture you’re painting, a really great picture of an environment where your body is expected to be always in relationship to your will and always under your control, right?. . . Because you don’t have always that kind of rigid control over any given moment.” I am referring to the clumsiness and accident-prone nature of excessive

234 daytime sleepiness, but Cynthia’s inability to control her body came not from narcolepsy, but from the medicine she was given to treat narcolepsy.

Cynthia has a complex relationship to dancing: it is a place where she can escape the double-bind of unending responsibilities at work where she is always on call and the unfulfilling and overwhelming home life. While not being very alert will affect her dancing, sleepiness is not something that happens in the dance studio—which is why it can be called a narcolepsy free zone. This interest in exercising control over her body conflicts with the way narcolepsy undermines it through issues with memory and through medication side effects.

Losing the Body

In Cynthia’s first interview she told me about the dizziness she experienced when she was on Sodium oxybate (Xyrem), which is taken at night to help make sure people with narcolepsy can get deep sleep. All drugs come with the risk of side effects, and this drug is no different. Referencing her side effects, I ask about narcolepsy while not wanting to say the word, “in terms of your unique issue, how did you get to—were you worried about it making an appearance here or how did that unfold?”

At this she smiles, uncrosses her legs and tells me that it came down to needing to give up dancing because of Sodium oxybate (Xyrem) when she had initially turned to the medication to help with her memory, which was beginning to make dancing difficult. She says, “When I started on Xyrem [Sodium oxybate], that had a big effect on my dancing.”

Looking at the trees and the garage, she tiptoes into the story, “It was kind of weird or emotional. I had gone to a class I couldn’t, I couldn’t” she is distracted by a car passing

235 as she searched for the word, “My equilibrium was all off. So anytime I bent over or got ready to do turns or anything” bending forward in her seat to demonstrate and turning her hands, “I was just losing my balance and about to black out. I got very frustrated and

I walked out of class early and was just upset and crying so after class.”

To clarify the timeline, I ask, “And you stayed gone for the rest of class?”

She continues, “Yeah, stayed out for the rest of the class. I was just in my car crying in the parking lot, and she walked past my car and saw me sitting in the car.

That’s when she was like, ‘What’s going on with you?’ Because she had never seen that out of me before. Then I told her about it and basically for me it was scary because dance is something that I’ve done since I was three years old.” She told Sarah, her dance instructor that she had a sleep disorder and that she was on a new medication and that she needed to choose between this medicine and dancing. Cynthia was crying and frustrated with being forced to pick between the two.

Sarah’s response to her was, “Don’t stress about it. Don’t worry about it.” And she told Cynthia that she would do research to see if there is a way to find alternative moves for people with equilibrium issues. Cynthia was on Sodium oxybate (Xyrem) for only a short time, and so the issues with dizziness went away when she was switched to another medication.

This is powerful story for several reasons. This story situates the meaning of medication and treatment—often regarded as universally good and worthwhile—in a context where we can see how this medication affected her life. It created a dilemma—

Cynthia felt as if she was being asked to sacrifice a lifelong passion to get treatment for a

236 lifelong illness. Her visible struggle and her willingness to tell her dance instructor about her narcolepsy and the side effects she was dealing with constitute a rare story about disclosure because instead of being met with confusion, misunderstanding, derision or apathy, Sarah responds to the crisis with what seems to be compassion and empathy for

Cynthia.

These types of interactions around narcolepsy and treatment socially construct an understanding of narcolepsy that is connected to a community of people who are there to support and help each other. The role of family members, friends, co-workers, and educators remains the same when dealing with someone with narcolepsy. Their reaction to and response to narcolepsy socially constructs the meaning of the condition. For

Cynthia, the meaning of her condition is tied to how it is discussed and not discussed at work and with her family—it is the source of her reticence and resistance to taking over the family business. However, in the company of dancers, her memory problems and the dizziness become issues comparable to other non-professional dancers Cynthia’s age, and as such they can be addressed and accommodated. The ballet company works with a few people who are much older than Cynthia, and that means fostering an environment with a certain degree of flexibility so people with different levels of ability and expertise can work together in productive and creative ways.

Active with Narcolepsy

Being active with narcolepsy was central to two other interviews in different yet related ways. I will introduce their stories before discussing my own complex

237 relationship to running, and before telling the story of what I learned when I attended the production of The Wonderful Wizard of OZ ballet and witnessed Cynthia performing.

John is a very busy man with narcolepsy and sleep apnea. He is self-employed and married with most of his children already out of the house. An African American, who went to graduate school, he is very open to telling me that he has difficulty relating to the experiences of the mostly White middle class women who make up most of the

Columbus support group. During our first interview, John’s diagnosis story starts with him breaking his ankle twice while skateboarding, which alerts his doctor to the possibility that his bone density is low and this is associated with sleep apnea in men7.

His sleep test revealed narcolepsy and sleep apnea and he was prescribed treatments for both. He turns to his phone during our interview and describes how, “Because when I’m sleepy – so even right now, you see me on my phone and I’m gonna play a game and eventually I won’t be able to contain it. I already see that. So, I do things to keep me awake.” When we met at a Skate park, he told me about how he thinks about his adventures in the favelas of Brazil, where he met his wife, as being like the skateboarding—they were all ways of self-medicating to become more awake and more alert. Unlike many of the people I interviewed in Columbus, John does not talk to his family about his sleep disorders and thinks they do not understand it. There are many types of activities that John sought to help him keep excessive sleepiness at bay.

I started running in college when I started to get to know a Morehouse alum who was a Yogi—a practitioner of yoga. He taught yoga one-on-one and was some sort of personal coach with an Eastern twist. He thought that I was a “metal,” meaning I had a

238 strong lung and was disposed to depression unless I made a habit of working out my lungs. He galvanized me to run and to do so more and more. When I found myself stressed or overwhelmed, I would go for a run down the brick pedestrian corridor that connects Morehouse, Spelman College, Clark Atlanta University, and Morris Brown

College. I ran without headphones for years because I thought of it as meditative and relaxing—my run is more of a leisurely jog. I have a cluster of veins that grew into a mass in my calf so running stops it from getting tight and causing me to limp—which occurs if I wear heals regularly or have not ran in months. I also think of running as a prophylactic measure to keep depression at bay since people with narcolepsy have such high rates of this comorbidity. It is more of a jogging pace than a running pace. I also like to think it helps with concentration and focus; but the thing that keeps me ready to jog a

5k any day is the way jogging gives me a sense of control over my body. I am able to set a goal: a weight goal, a size goal, a destination goal, a pace goal, a frequency goal; and work to reaching it. As my narcolepsy ate away at my ability to do many things, this ability to set a running goal and to patiently and strategically reach it has helped to keep my relationship to my body a positive and productive one.

Levi, Aurora, and Sable are also participants that enjoy being active. Levi enjoys spending warm windy days on the lake wind surfing. Aurora tended to do physically active jobs to keep her on the move, like newspaper delivery, but is now trying a more sedentary job that is engaging in other ways. Although Sable has significant limitations because of her MS, she still loves to dance. During our first interview, Sable told me about a story that shows why more people with narcolepsy are not so physically active—

239 even these types of things do not always keep sleep at bay. First, she told me about how

Rock-n-Roll concerts are a special treat because the tickets are expensive. At a concert by someone like Stevie Ray Vaughan, a Blues guitarist, where, in her words, it was “loud, loud. People are screaming and yelling. And good ole Sable, fall right asleep. . . I could fall asleep anywhere doing anything at any time.” While some people have safe zones, like dancing, skating, or running, there are others like Sable who are vulnerable to sleepiness everywhere.

The Wonderful Wizard of OZ and the Social Construction of Ability

The day I see Cynthia’s Facebook post about The Wonderful Wizard of OZ ballet

I put it on my calendar and tell her that I will be there. It is November and it has been months since I last saw her. The day of the event is the day after I took my first dosage of

Sodium oxybate (Xyrem), and so I message her letting her know that I will need to play it by ear. In many of my interviews I heard that the first few days on Sodium oxybate

(Xyrem) were bad, so considering all those stories, I was unsure about committing to the three hours of driving.

The morning of the ballet, I woke up refreshed for the first time in ages—I had forgotten that sleep could feel restorative. My body is full of surprises. I jogged a little more than three miles on the bike trail that winds through a park and partially wooded area in town. My Apple Watch awarded me with a workout achievement burning more calories than any previous workout. Half-way through the day I decide that I am going; so, I finish up my work and head to Columbus just a few minutes late.

240 I show up to the mysterious building five minutes after show time. The building has no signs to reassure me that I am in the right location. I drove around the parking lot in hopes of seeing someone else but only cars. As I leave my car, I spot two women approaching the doors I know were not the entrance. There is a sign indicating that this is the stage entrance, but where was the real one? Together we ventured around the outside of the building until we came across the entrance. While walking, we wonder about the high school band noise blaring from the other side of the apartment complex next to the parking lot. After purchasing tickets, the volunteers are off to fetch three folding chairs for us to sit in. There is only one program between the three of us.

The ballet has begun, Dorothy is dressed like the Dorothy in the Judy Garland movie with a blue and white plaid overall dress with a white turtle neck. A little dog makes a cameo and walks on to the stage where Dorothy picks him up. The audience is delighted—for the rest of the show Toto is a stuffed dog. Dorothy then gets sleepy and goes inside the miniature house. The music changes indicating a new scene, and soon women with dark gray sheath dresses and black tights enter using motions that lead with their arms as if pulled and then pulling. They swirl around the house picking up speed and slowing down to dance in place always with long sweeping gestures. An occasional pirouette before they leave and another scene begins.

The ballet included a number of scenes that I have trouble placing in the familiar movie. I later realize that the ballet is based on the book more than the movie. I will not narrate the whole ballet, but I wanted to give a sense of what I saw. Many of the scenes are choreographed as group performances with costumes, music and themes that fit into

241 the story of The Wonderful Wizard of OZ. Then there are solos; each of Dorothy’s friends have a solo, and the wicked witch, and the wizard. Places and things are agents in this ballet. The wind, the yellow brick road, the forest, the poisonous poppies, are all embodied in dances clothed in emblematic costumes. The pale-yellow dresses and

Dorothy’s silver ballet slippers are drowned out by the harsh stage light, but the effect is clear. It is around the time Dorothy meets the Tinman, a man in grey overalls painted silver with a funnel on his head, that I start to see a connection between my project and the ballet. I think to myself, “My interviewees are like Dorothy.” They are both misfits and must navigate a place that is hostile to them. Like Dorothy’s need for help and companionship, my interviewees also need, and in some cases, find, help and companionship in navigating the spaces I highlight in this project.

When it is time for the group to come across, the Lion, played by Cynthia, one of two women of color in the production, I am enraptured in the ballet and the metaphor it offers. Dorothy, the Tinman, and the Scarecrow are having a picnic when Cynthia appears as the Lion, in a golden sequins and tulle that matches her golden curls. The Lion starts to slowly creep towards the picnic, putting her index finger over her mouth to communicate her intention to surprise the picnickers. Her sequin top and tulle-like skirt are gold like her golden skin and golden hair. She befriends them and the stuffed Toto before they mime having a conversation about what to do next. They dance with the yellow brick road before they all leave the stage leaving Cynthia to perform her solo. One of her roar-like moves is when she picks up her knee tucking her foot under her and puts her hands curled into a claw next to her ears while saying little with her face. They

242 pantomime the scene, and once the Lion is accepted as a part of the group, she does her dance solo to a piano cover of Brave (originally released by Sara Bareilles and covered by Piano Tribute Players). Even though it is an instrumental, the familiar words imbue the performance and my viewing with meaning:

You can be amazing

You can turn a phrase into a weapon or a drug

You can be the outcast

Or be the backlash of somebody’s lack of love

Or you can start speaking up

. . .

Say what you wanna say

And let the words fall out

Honestly I wanna see you be brave8

The Lion’s dance has a mix of ballet, African and jazz moves, and is the only familiar cover in the ballet. Her solo is a celebratory dance in gratitude for the forgiveness and friendship she found in three strangers. As I watch, I also am also celebrating what I have found through this project and through the relationships that will outlast it. As Dorothy, the Tinman, the Scarecrow, and the Lion journey on and overcome obstacles like the deadly poppies, the witch, and the wizard, I think of how important the help of others is in living with the challenges of narcolepsy. The voices of the people who have narcolepsy, their brilliance, love and courage are a source of friendship, support and

243 encouragement for those who are in need of it—only now, a year after starting the project can I recognize just how much I needed their companionship.

On the drive home I am invigorated by the performance and what it means to my project. I was so enamored by the metaphor I decide to read the original book The

Wonderful Wizard of OZ, by L. Frank Baum, to see if it held up or was a stretch. After reading the original story, I discovered that the connection between my project and this

American fairy tale was even stronger than I had suspected. I was delighted to learn that

The Wonderful Wizard of OZ was about the social construction of disability.9

The Scarecrow, the Tinman, the Lion were all told that they were deficient by someone they trusted, and as a result they came to view their actions through the prism of this flaw. In the case of the Scarecrow, in the original book he is only two days old when a crow sits on his shoulder and tells him, “‘If you only had brains in your head you would be as good a man as any of them, and a better man than some of them. Brains are the only things worth having in this world, no matter whether one is a crow or a man.’”10 The

Scarecrow had recently been abandoned by his creator, and so he trusts the only creature that came to keep him company, and this outlook shapes his understanding of the world.

Later that day when he meets Dorothy, he is convinced that his naiveté is because of his brainless state and never comes to see it as a feature of youth. Throughout the adventure, the Scarecrow is the first to come up with novel ways to address the issues they encounter, and before the Wizard of OZ leaves, he tells the Scarecrow that he is the wisest and wants him to rule over OZ. Each character’s disability is similarly socially constructed in this way, and they are all utterly unable to see how brilliant, loving and

244 brave they are until the Wizard tells them a different story—providing them with a narrative prosthesis.11

Some cultural critics, such as Alissa Berger, approach the legacy and the original text The Wonderful Wizard of OZ arguing that, “The variations of text and performance which follow Baum’s work must therefore be engaged on the merit of their individual forms and cultural contexts rather than as ‘copies’ of a theoretically ideal ‘original.’”12

However, as a disability studies scholar, it is important to point out how over time the story that was clearly about the social construction of disability has through subtle and dramatic changes over the decades, been transformed into a tale that presents disability in the ways that Baum was critiquing.13 Haller’s review of the Broadway production of

“Wicked” is scathing, pointing out that in the Broadway show, “disability equals evil once again, and the ‘punishment’ for disability is death,” because the wheelchair bound character in “Wicked” is cured by the ruby slippers until she is ultimately crushed by a house.14 While highlighting the social construction of skin difference, the book Wicked and the Broadway production “Wicked” undo Baum’s narrative about the social construction of disability. Today’s era of standardized testing came even despite all the critiques of intelligence testing and the problematic pedagogy of teaching to the test.

Therefore, perhaps Baum’s original story about the social construction of disability has never been more salient.

When I teach about the social construction of reality, I tell my students about the

Scarecrow before asking them if they know any Scarecrows—people who are brilliant, beautiful, confident, brave, or caring, but are unable to see their true abilities because

245 someone they trusted judged them incorrectly. I was humbled to hear them recognizing scarecrow in their friends and family members. The stories I have shared in this dissertation compose a part of the ongoing and unending social construction of disability, and as such, it is important to be clear about the relationships between bodies, the environment, and social construction. The context of being physically active allows narcolepsy to be socially constructed as a disability. Meanwhile, the meaning of this disability is not one that is attached to messages and fears about punishment. Instead of receiving negative messages that constructed her experience of narcolepsy, Cynthia was embraced and was told about the possible ways she could dance despite her side effects and narcolepsy. Like in Baum’s book, both the Scarecrow and Cynthia are offered a narrative prosthesis to extend beyond the story that limits them.15 In other words, the

Wizard offers the Scarecrow and all his friends, except for Dorothy, an alternative story to allow them to see the world and their bodies differently. Cynthia’s narrative prosthesis is the rare construction of narcolepsy as something that is worthy of empathy and support.

Conclusion

This chapter is very different from prior chapters because Cynthia wanted to talk about her narcolepsy free zone and because the difficulties she experienced there came from side effects and not narcolepsy. Side effects are a major part of having a condition that requires that a person to take medicine every day for the rest of their lives. Cameron, who is one of the recently diagnosed participants, recalled her reaction when the doctor that delivered the news, “I’m not going to be completely normal and that I am going to

246 need medicine for the rest of my life.” Like a lot of the other recently diagnosed participants, Cameron also still has the habit of comparing herself to the pre-narcolepsy self while wishing she could do more. Medication is a major asset that helps people with narcolepsy catch up and keep up with others. The medications and the side effects they bring are a part of everyday life with narcolepsy. Although these medicinal interactions are often kept out of sight and may not even be visible, they are not a small part of the work that goes into managing a condition like narcolepsy. It is only fair, that in a dissertation that amplified sensory details that I also amplify this unfortunately ongoing bodily dimension of life with narcolepsy.

To review, Cynthia is 42 and was diagnosed when she was 28, however she spent many of the earlier years without medication and was unhappy with her medical treatment. She works at her family’s funeral home and is expected to take over as the owner despite her doubts about her capacity. Her family knows about her condition and she can take naps during the day when needed. The support group has been a big help for

Cynthia, who felt very alone in her struggle, and encouraged her to try Sodium oxybate

(Xyrem). This drug came with the side effect of dizziness and this caused a lot of problems around dancing. When Cynthia told the dance instructor about her concerns, she was comforted and found that the instructor was very willing to try to make it work.

Cynthia, however, is taken off the medicine and is able to continue preparing for her role as the Lion in the performance of The Wonderful Wizard of OZ. The ballet and the original story of The Wonderful Wizard of OZ is a metaphor for this project and the voices within it.

247 Chapter 8 Notes

1 Berger and Luckmann, The Social Construction of Reality, 30. 2 Mehan, “Five Features of Reality,” 389. 3 Swoboda, “The Social Construction of Contested Illness Legitimacy,” 234. In her argument she focuses on how the emergence of a new illness is a social process in which illness sufferers are involved in the formation and representation of the illness through interactions with medical professionals and large institutional forces. Narcolepsy is legitimated because its interactions with institutions construct it as a valid and therefore not a contested illness. 4 Ibid., 244. Participants in their study thought that the lists of symptoms associated with contested conditions were broader than chronic illness conditions which contributed to difficulty in being viewed as legitimately sick also made diagnosis difficult. This is similar to way people with narcolepsy are often misdiagnosed before receiving the correct diagnosis. 5 Japp and Japp, “Desperately Seeking Legitimacy: Narratives of a Biomedically Invisible Disease.” A person’s moral character is put into question when friends, family members, and medical professionals begin to believe that the symptoms originate in the patient’s mind. Questions about authenticity, exaggeration raise challenges to the ontological integrity of the self and, “The resulting dissonance, shame and self-doubt can be extremely debilitating, as suffers ask themselves: ‘Do I have the right to consider myself ill? Am I lying of deceiving myself and others? Am I taking advantage of others’ generosity and good will.” 6 Jaeger, Röjvik, and Berglund, “Participation in Society for People with a Rare Diagnosis,” 48. 7 Liguori et al., “Physical Activity Contradictorily Affects Bone Mineral Density in Obstructive Sleep Apnea Patients at Different Ages. [Letter to the Editor],” 273; Sforza et al., “Reply to “Letter to the Editor,” 274. In this exchange between Liguori et al. and Sforza et al. both authors discuss why their studies on bone density in sleep apnea patients have had diverging findings. 8 Bareilles, Brave. 9 Haller, “Wicked”; Eyler, “Disability and Prosthesis in L. Frank Baum’s The Wonderful Wizard of Oz,” 319. 10 Baum, The Wonderful Wizard of Oz, 48. 11 Eyler, “Disability and Prosthesis in L. Frank Baum’s The Wonderful Wizard of Oz.” 12 Burger, The Wizard of Oz as American Myth, 34. 13 Haller, “Wicked.” 14 Ibid., para. 11. 15 Eyler, “Disability and Prosthesis in L. Frank Baum’s The Wonderful Wizard of Oz,” 319.

248 Chapter 9: Conclusion

This chapter will first reflect on possibilities for new ways to communicate about narcolepsy. Then I will return to the research questions and reformulate them as answers to reflect on the stories I engaged with about narcolepsy in everyday life. To access the meaning of narcolepsy as a narcoleptic meant experimentally writing about my time with fellow narcoleptics while examining how place affected how narcolepsy was experienced. I believe the success of this performative writing lies in its capacity to help readers access the sensorial and emotional drama of living with narcolepsy while also animating the medical constructs endemic to the condition. This chapter ends by looking forward to explore issues that future research on similar topics with comparable methods may consider when advancing this line of inquiry.

One of the early discoveries in my interviews with people who were newly diagnosed was the way conversations provided an opportunity to put into words profoundly internal experiences of sleepiness. This context of conversation called for creating and hearing new words and new combinations of words to communicate our bodies in a way that reflected how we made sense of narcolepsy. My participants did not explicitly disregard medical language because it also was used by them. But in using the language of symptoms, there often is some measure of doubt conveyed as to whether it is being deployed correctly. Moreover, as I point out in Chapter 1 and in Chapter 4, some of the terms like “excessive daytime sleepiness” and “sleep attack,” which are commonly used to define and describe narcolepsy in medical literature, fail to help people with narcolepsy communicate about their subjective experiences in their efforts to educate

249 family members and friends. The role of language in the social construction of narcolepsy should be to index subjective meanings.1 Therefore the deployment of terms that are more felicitous to the lived experience of narcolepsy may work to remind concerned parties about the dimensions of narcolepsy that are most relevant to fostering relationships of support and encouragement. Discovering new words to describe symptomology is beyond the scope of the present study. However, I have illustrated that ineffective language about this condition participates in constructions of narcolepsy that increase levels of stress for patients.

Patient education and family education should become more of a priority for physicians and nurses who treat narcolepsy. While my research, and the existence of a physician like Dr. Arora, both testify to major advances in the quality of treatment and understanding of narcolepsy, these are exceptions that prove the rule. Most of the participants in the project had physicians like the one Aurora described who knew little about the condition and therefore left most of the patient’s education to the internet. I wonder how many families have been broken because information about the condition fails to reach those who need it the most? Wolf-Meyer refers to narcoleptic patients as the model sleep patient because of our eagerness to submit to the biopolitics of surveillance and medical treatment to regain our capacity to engage with society.2 Medical treatment is limited when employers, teachers, and family members can be resistant to or undermine treatment and behavioral adjustments because they lack the necessary education to allow them to participate in a more productive and edifying way.

250 What Narcolepsy Means in Everyday Life

To further explore narcolepsy using the theoretical framework of social constructionism, I will put my observations and analysis in conversation with Berger and

Luckmann’s book, The Social Construction of Reality to examine how meanings emerge in everyday life. The meaning of narcolepsy in everyday life is different from the medical description of the physiopathology, symptoms, treatment, and tests—which is what narcolepsy means to sleep specialists and doctors. The meaning of something emerges not out of dictionaries and textbooks. Rather, as Berger and Luckmann observe, meaning is in our understanding of reality and, “Everyday life presents itself as a reality interpreted by men and subjectively meaningful to them as a coherent world.”3 The meaning of the world is subjective and is shaped by how people think about it and act towards it.4 Hence, the meaning of narcolepsy is subjective and similarly shaped by how people think of it and act regarding it. This dissertation sought to uncover many of the meanings embedded in the lives of individuals in specific places to highlight how the meaning of narcolepsy and its symptoms vary depending on the context, the individual, severity, familiarity, and other factors. Despite the utter singularity of each possible meaning of narcolepsy, meanings cluster in important ways, and they cluster around different spheres.5 Therefore the meaning of narcolepsy will tend to reflect relations and expectations of a specific context.

In these different sectors, according to Berger and Luckman, there are things that are either familiar, or things that are unfamiliar. Our sense of reality is based on being able to maintain everyday routines. Narcolepsy tends to be perceived as problematic

251 because it emerges as something that is unpredictable and therefore disrupts everyday routines. Even a routine of taking a nap regularly can be perceived as disruptive if it does not fit neatly inside of how the workday should run. Meanwhile, even as a problematic part of a workday, the meaning of narcolepsy is further shaped because the person with narcolepsy might use different routines which will bring about a different sense of reality.

Berger and Luckmann claim that when someone encounters another person who is no longer in a common world where they have a shared sense of reality, the outsider is perceived as “mad.”6 As persons who occupy a spatiotemporal reality that is different from others, people with narcolepsy are in a different world. However, people with narcolepsy can invite others to join them in their worlds where sleep and wakefulness are not mutually exclusive.7 Through performative writing about the everyday life of people with narcolepsy, I sought to immerse readers in the alternative spatiotemporal worlds of people with narcolepsy.

My participants often found themselves in situations where they were a misfit— when their bodies failed and/or did not fit the expectations of a space or activity.8 This misfit often comes in the form of diminished alertness and sleepiness. The concept of a misfit is useful because it allowed me to focus on what people do when they find themselves not fitting the expectations of space or time. In occupying a subjugated position, people with narcolepsy possess subjugated knowledge about their unique embodiment. Consequently, the support group can be understood as a type of community where they can get together and support each other and help each other navigate medicine, work, home, and driving.9 A lot of the coping I witnessed, participated in, and

252 received was both effective and adaptive, meaning that, according to Falvo, effective and adaptive coping behavior reduces stress and enhances attainment of a person’s fullest potential.10 Coping can be encouraged by the social environment where they find themselves, or it can be discouraged by that social environment.11 The case study approach to exploring the relationship between narcolepsy and place allowed me to collect narratives that revealed how people with narcolepsy coped.

There are many ways the people I have interviewed coped with misfitting in their narratives—they adapted, changed, persevered, or took a nap. For example, when Elaine knew that she needed to take her son to the hospital and knew her sleepiness was not yet under control, she took a nap to ensure that she was going to be awake and alert. This is something I was once very reticent to do, but I have begun incorporating naps into my day to better manage sleepiness. When Cynthia found that her dizziness was going to make dancing impossible, at first, she cried and received support, then her medication was changed so she could dance without falling. Sable initially persevered in driving despite several accidents, but as her body changed and once she could get around without driving, she changed her position on driving while narcoleptic. Penny used technology to adapt to the needs of teaching all the while persevering until the doctors found the right dosage for her. When I ran into her at the sleep doctor’s office, she happily reported,

“This is what it is like to be normal.” In my chapter 4, my autoethnographic chapter, I described doing them all: I changed, I adapted, I persevered, and I took a nap. Perhaps that is what narcolepsy means to in our collective everyday life: changing, adapting,

253 persevering, and taking naps. Using writing that shows rather than tells, this text performatively enacts this way of being a person with narcolepsy.12

While meanings will vary widely, narcolepsy means having a brain that does not organize sleep and wakefulness the same way it is organized by non-narcoleptics. This difference gets marked in various ways and may have material consequences in the form of being tardy, being fired, making mistakes, getting into accidents, and experiencing isolation. These types of experiences may construct narcolepsy in negative terms when they occur and empathy, understanding, and belonging are withheld. Alternatively, as

Cynthia’s story shows, misfitting can be a site of empathy, understanding, and belonging.

Having those types of reactions to the absences that narcolepsy creates facilitates everyday meanings of narcolepsy that lack all the doom and gloom of its diagnostic descriptions.

The theoretical framework of social constructionism emerged out of the stories, observations, and analysis I performed. Ethnographic research encourages researchers to let the field experiences guide analysis and sense making, and this meant that theoretical language would emerge during the research and writing process. Social constructionism emerged as key for me towards the end of the project, but it also provides a way of making sense of the earlier stories and problems the dissertation sought to address. That is to say, perhaps medical descriptions of narcoleptic patients as unemployable and uneducable participate in the social construction of narcolepsy. I believe the influence of discourse and language is less influential than our immediate relations and embodied reactions at the same time that medical discourse is amplified and legitimized in ways

254 that interpersonal communication is not. This is to say that although I argue that the meaning of narcolepsy is constructed in everyday interactions, the legitimacy of medical descriptions tend to contribute to the discursive stigmatization and marginalization of people with narcolepsy by failing to adequately educate patients, family members, and others about narcolepsy. This is a concern I am confident the American Academy of

Sleep Medicine is equipped to address with the help of patient advocates and rehabilitation experts.

How Place Affects People with Narcolepsy

A faculty member walks with me from the plane to the terminal. As we take in our first glimpses of the Las Vegas terminal, she mentions, “The airport toned it down—the terminals used to be much brighter and louder.” She goes on to wonder if the environment changed because the noise made it hard for travelers to hear flight announcements.

“Is that right?” I said while nodding. As I follow the other passengers I begin to imagine more lights. Where more stuff would go? As I tried to picture the absences she mentioned, I suddenly realize how more lights and loud sounds would likely overstimulate people on the autism spectrum. This airport used to terrorize people who were neurodiverse. This trip will be full of surprises.

The hotel where our conference is being held is too dark for me. In the hotel lobby, the black ceiling makes the space feel bigger while also accenting the sea of florescent lights atop countless gambling machines. The dim lighting creates the effect of a never-ending dusk. This darkness echoes the airport’s deep gray interior and its

255 gambling gardens planted throughout the corridors. The dark hotel lobby and the dark conference rooms affect me in ways the designers and managers may not have anticipated. My brain starts to get foggy from merely recalling these dim spaces and my inability to turn the lights on to expel the encroaching sleepiness that comes with being in dark places.

Variance between bodies can be seen in how spaces are navigated and in how the material world is engaged. Subjective experiences are often unable to make claims about causality, which is the domain of objective language. Alternatively, storytelling can communicate how place and interactions have an effect. In affecting us, place participates in shaping how reality takes form.13 Stories allow us to communicate about sense making that recognizes the continuous processes of adjustment and transformation.

When I discovered my aversion to darkness was a relationship between my narcolepsy and place, I sought to uncover more relationships between narcolepsy and place. I quickly learned that no one was averse to darkness in the exact same way that I was—no one else seemed to mind the dimly lit Strongwater room as a place to meet or

Sable’s dimly lit condo. Statements about generic places are contingent upon the idiosyncrasies of a person’s narcolepsy. In other words, while narcoleptics may be able to sleep nearly everywhere, every narcoleptic cannot sleep just anywhere. Elaine, for example, avoided watching movies because she is not able to stay awake during them, while I have rarely fallen asleep while watching movies. Place interacts with narcolepsy differently based on the specific way sleepiness manifests during the day.

256 Similarly, being in a car, at home, at work, or physically active presented the people in my project with different situations. As Falvo points out when discussing the meaning of disability:

A health condition that results in a disability for one individual may not result in a

disability for another individual with the same health condition. Therefore, the

degree of disability an individual experiences as a result of a health condition

depends on the individual's goals as well as those facilitators and barriers that are

present in the physical and social environment.14

Many of the barriers that my participants faced emerged from the social environment— the attitudes of co-workers, the others not believing their accounts, the inability to nap, the availability of other modes of transportation, and the isolation that often accompanies narcolepsy. Furthermore, the social resources a person with narcolepsy has may contribute to or detract from their ability to navigate everyday life. Since a disability is defined as an interaction between the environment and personal factors, the social environment (such as social attitudes, norms, services, and political systems) more than the specific symptoms contributes to disabling people with narcolepsy.15

How People with Narcolepsy Occasion Social Support in Specific Contexts

This dissertation is a practicum on incompleteness. It should help people deal with the never-ending state of lack that is not limited to the experience of narcolepsy— not knowing enough, not being active enough, not feeling enough. The ability to control a disorder like narcolepsy is what Wolf-Meyer calls a dual-faced situation. It permits control over the symptoms and offers a sense of self-efficacy, but it also requires

257 “compliance,” which is not a simple request.16 Maintaining health insurance often requires having a job or a source of income, and if that is in place, compliance also requires the care and interest of family members who must deal with side effects, doctor visits, and the financial dimensions of treatment.17 Narcolepsy, of course, threatens a person’s ability to maintain a source of income, trusted family members, and health care.

These are all facts that could be deduced from research on narcolepsy alone. The stories told by my interviewees, and the process of researching, both move beyond accounts of absences to reveal how people with narcolepsy operate in society and relationships.

Through interactions with others narcolepsy transforms from a source of absence into an interaction situated in a spatiotemporal context. When my participants fail to fit into dominant spatiotemporal rhythms, this is an instance of what Garland-Thomson calls misfitting. As a support group, we were able to turn our shared tendency to misfit into a shared identity18—we all can empathize with not being able to make it to the meeting and hence there are meetings where no one shows up. In many ways, the attendance of the support group also waned because of all the support communication that unfolded on

Facebook. This format unfortunately does not replace the experience of hearing someone put an un-named personal experience into words because spoken language makes subjectivity “more real” to both the audience and the speaker. 19 There are many benefits and drawbacks to the centrality of Facebook in the support group, which is beyond the scope of this project. However, future research on conditions that create isolation and involve fatigue, sleepiness, or tiredness should examine how groups navigate the paradox of organizing around a condition that limits social engagements.

258 How Exchanging Stories of Narcolepsy Assists in Coping with Narcolepsy

Prior to researching this dissertation, I did not understand all the drug talk between people with narcolepsy until my relationship with my medication suddenly became more complicated. I discovered that exchanging stories about narcolepsy provided me with language and belonging while also offering pragmatic suggestions about medication, side effects, and doctors. Pharmaceuticals are key to having a sense of self efficacy over efforts to manage symptoms and to being able to establish goals that sleepiness might otherwise sabotage. Perhaps the most promising thing I gained from hearing the stories of fellow people with narcolepsy is an enhanced ability to imagine a fulfilling and happy future with narcolepsy.

In her book, Narrative Imagination and Everyday Life, Molly Andrews explains how asking people to share narratives means putting oneself in a position where one must suspend disbelief to follow the storyteller’s tale.20 In listening to my participants’ stories,

I needed to be able to be open to new possibilities about what narcolepsy may mean in a person’s life. The stories highlighted here as case studies are moments where my travel companions succeeded in taking me to places and meanings that were entirely new to what I was capable of imagining. Andrews argues that our freedom relies on our ability not only to see things as they are, but it also depends on our ability to see things as they are not and therefore begin to imagine a hoped for reality.21 Knowing about the support and care Elaine’s employers offered her should help others imagine nurturing relationships with employers. Discovering that Penny’s husband came to accept and understand her narcolepsy may help others imagine similar transformations in how their

259 family members think about narcolepsy. Moreover, these combined stories of people with narcolepsy should empower sleep professionals to imagine people with narcolepsy as people who are doing incredible things. It also is important that people with narcolepsy be capable of imagining niches of spatiotemporal placements where they are not disabled.

Moreover, these stories should enhance the world’s capacity for imagining people with narcolepsy as productive and valued members of society who may require adjustments in where sleep is expected. In short, this dissertation should help readers imagine a world where it is acceptable for people like me and my participants to sleep everywhere.

Looking Forward

Future research on neurological conditions and hidden disabilities may seek to develop an intricate way of thinking about the role of place. Pink explores how ethnographers approach place as both open and based on human perception.22 Theories of place can offer a novel approach to theorizing disability as an interaction between place and bodies. The places explored in this dissertation each have rich and contradictory histories and usages, and theories about place may contribute to descriptions and analysis of place-making practices.

The absence of people who are from economically disadvantaged backgrounds in this study is not an accident because not having access to health care or minimal access to health care might severely circumscribe their ability to participate in the project.

Throughout my time in the field and while analyzing the interviews and observations, my race, socioeconomic background, sexuality, and age influenced my experience of the research. Similarly, the intersectionality of each interviewee is a part of their story and

260 their experience of narcolepsy. Future research on hidden disabilities may choose to focus more on the dynamics of intersectionality as it is perceived by the interviewees or the researcher. Research on neurodiversity conditions at the intersection of class and race may provide a rich account of the way ableism operates in relationship to these and other aspects of inequality.

While many people with narcolepsy may, at times, be vulnerable to accusations of not being awake enough or active enough, people who are members of minority groups may lack resources and experiences that may assuage such assaults on their character.

The oppression of people with disabilities and the treatment of people with chronic illnesses both unfold in a racialized and gendered world, and efforts to describe or analyze them also reflect the intersecting and interlocking structures that reify the meaning of these categories. Indictments regarding who is aware enough and who is able enough to be a citizen, a student, a parent, a worker, or even alive hinge on the way unexamined norms are permitted to permeate society unabated. In the immediate future, norms about what sleep is and when it might possibly occur will continue to marginalize and discipline people. Nevertheless, narratives of people with narcolepsy and the thankless work of other spatiotemporal rebels will continue to disseminate a vision of life that recognizes, and may even embrace, the possibility of sleeping everywhere.

Chapter 9 Notes

1 Berger and Luckmann, The Social Construction of Reality, 35. 2 Wolf-Meyer, The Slumbering Masses, 108–11. 3 Berger and Luckmann, The Social Construction of Reality, 19. 4 Ibid., 20.

261

5 Ibid., 21. 6 Ibid., 24. 7 Ibid., 25. Berger and Luckmann claim that other’s realities are characterized by modes of experience and are viewed as “an excursion.” That is we are able to leave our sense of reality and join someone’s in an excursion. 8 Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept.,” 592. 9 Ibid., 597. 10 Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 12. 11 Ibid. 12 Denzin, Performance Ethnography, 93. 13 Stewart, Ordinary Affects, 4. 14 Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability, 5. 15 Ibid., 4. 16 Wolf-Meyer, The Slumbering Masses, 11. 17 Ibid., 11–12. 18 Garland-Thomson, “Misfits: A Feminist Materialist Disability Concept.,” 597–98. 19 Berger and Luckmann, The Social Construction of Reality, 37. 20 Andrews, Narrative Imagination and Everyday Life, 15. 21 Ibid., 5. 22 Pink, Doing Sensory Ethnography, 2015, 34.

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277 Appendix A: Interview Schedule

Date:

Pseudonym: Time:

Interview Protocol & Schedule

Procedure Overview: Three primary area questions will be asked. All the other questions listed below are possible directions to probe and guide the interview.

Interview 1: Semi-structured Interview

Interview Objective: Identify possible areas for affordances and to obtain their diagnosis narrative.

Introductory statement:

I want to learn from your experience throughout this interview. At the same time I want you to understand that I also have narcolepsy; so as we go on, I want you to feel free to ask me questions too. First, I will tell you a little bit about my experience so you will know what type of experiences I have. Then I will ask you questions that are designed to give you an opportunity to tell me about yourself. There are three areas that I will want to cover: (a) your diagnosis story, (b) what areas of your life are most affected by narcolepsy, (c) and what type of relationships you have that help you manage narcolepsy and everyday life. I will take notes and may ask follow-up questions. Towards the end of our conversation, we will begin to identify where our next interview should take place and what it might be about.

278

1. What is your diagnosis story?

Pathology Probes:

1. Tell me about how you learned about your narcolepsy. 2. What were the first signs that something was not right? 3. Do you have cataplexy? When did that start? 4. Since narcolepsy onset is very gradual were there any diagnoses before the sleep test? 5. Do you have any co-morbidities, conditions that are caused by narcolepsy (depression, TMJ, obesity, high-blood pressure, infections due to poor immune system, etc.) Tell me about it. 6. Were you diagnosed before the symptoms got in the way of fulfilling responsibilities or roles? Did the diagnosis help? 7. How long did it take between the onset of the first symptom (insomnia, hypersomnia, sleep paralysis, or night terrors) and the sleep test/diagnosis? Diagnosis Narrative Probes:

8. How are the people in your life a part of your diagnosis? 9. What were your first impressions of narcolepsy once you learned of the diagnosis? 10. Are there any dreams or hopes that were changed by your diagnosis? In other words, did the diagnosis change a plan or how you thought about your future? 11. What aspects of treatment and management did you implement first and what things did you learn about later? 12. Who do you share your diagnosis story with? Have you noticed any changes when you tell different people the story? 13. How has your diagnosis story changed over time? 14. What vivid events suddenly made sense after learning about the diagnosis? 15. How did your understanding of narcolepsy change since your diagnosis? Adjustment to Diagnosis Probes:

16. How many medications/medication adjustments did you try out at first? Are you still trying to find the right fit? 17. Who did you feel comfortable telling during those first months? Would you still tell them if you could do it again? Why or why not? 18. Did you joke about it (symptoms or diagnosis)? Did others joke about it? How did that affect you or others? 19. What changed the most immediately after your diagnosis? 20. What types of side effects did you experience since being diagnosed? Doctor-Patient Probes:

21. Did you ever doubt the diagnosis? Many people have trouble understanding the diagnosis and learn the hard way, do you remember anyone being resistant or stubborn about your diagnosis? Did they ever change their mind? How did that affect you? 22. How would you characterize your relationship with your doctor around the time of your diagnosis? 279 23. Are their any unanswered questions regarding your doctor or how you were diagnosed? Social Support Probes:

24. Did you turn to the internet to better understand narcolepsy? What was helpful? How? 25. How does (significant other/ friend/ family member) talk about your diagnosis? Other Probes:

26. Is there any thing else that you want to tell me about your diagnosis?

B. What areas of life are most affected by narcolepsy and why? (education, work, family, friends, leisure, past, future, self-esteem, mornings, evenings, etc.) Spatial/Temporal Probes:

1. Tell me about your day today? What aspects of it did cataplexy, EDS, insomnia, or any other aspect of narcolepsy affect? 2. Where do you find yourself falling asleep or falling lately? 3. Do you keep track of your symptoms and moods? 4. What types of spaces, places or contexts are you most likely to be alert and awake? How did you discover this? 5. Are any of the annual holidays a source of anxiety or tension? What about more personal special rituals like vacations, anniversaries, and birthdays? Aversion & Symptom Probes:

6. Is there anything that you avoid regularly because of your narcolepsy or cataplexy? When did this start? Can you tell me more about this? 7. Which room do you spend the most time in? Where are you most likely to fall asleep or fall unexpectedly? 8. How do you deal with brain fog? Forgetfulness? And other aspects of narcolepsy that are not treated? 9. Which do you think is the most affected by narcolepsy: your attention, your communication skills, or your motivation? Why? 10. Alcohol, caffeine and sugar are common foods that people organize around; do you actively avoid any of these substances? If yes, how do you feel about being left out? 11. Do you have a particular story you can share?

Behavioral Probes:

12. What type of behaviors do you do to manage narcolepsy? (i.e. sleep hygiene, naps, regular bedtime, a pet to force you out of bed, a special alarm clock, special ways of talking about last night’s sleep, lighting, exercise etc.). 13. Have you noticed any patters between your condition and music, smell, temperature, time of day, season, social occasion, elevation, geography, or weather? When did you start to notice this? 14. Do you ever try to pass as non-disabled or hide your impairments? Tell me about it? 15. Do you drive? How is driving and narcolepsy connected in your life? 16. Do you exercise, play sports or have hobbies? How does narcolepsy effect it? 280 17. How does narcolepsy affect your media consumption (reading, audio books, watching TV, reading, listening to the radio, podcasts, etc.) 18. What safety concerns do you have? What safety concerns do your family and/or friends have? Technology Probes:

19. What technologies do you use to help mitigate your symptoms? I listen to audio books, use dictate, and text-to-speech. 20. What technologies, strategies, techniques, diets, did you try out? What worked and what didn’t? What are you going to try next?

C. What relationships help you manage narcolepsy and everyday life?

Disclosure Probes:

1. Do you tell your friends about falling/falling asleep in public? Who and why or why not? 2. Who was the last person you told about narcolepsy and why? Social Support Probes:

3. Do you have any relationships with other people with different sleep disorders, disabilities, or conditions that give you an opportunity to talk with someone who knows a little bit of what you are experiencing. 4. Who do you turn to when you are concerned about your medication or side effects? 5. Who can you laugh at yourself with? Who does not take mistakes too seriously? 6. If you came down with a mysterious sickness and needed to go to the ER at the drop of a dime—during business hours—who do you think will be able to drop everything? What about on weekends or after hours? Why would you pick this person? Tell me about them. 7. How do the people you rely on connect to the spaces/places/and contexts that make you fall/fall asleep? 8. Is there anyone who encourages you to pass as non-disabled or hide your impairments? Tell me about it? 9. Space/Place Probes:

10. At work or at school, do you have someone that you would be the best person to fall asleep/ fall around? Why? How did they react when they first learned about your Narcolepsy? 11. How are the people you turn to connected to the spaces/places and contexts that make you feel most awake and alert? Other Probes:

12. Is there anything else you would like to talk about regarding the people who help you or understand you the most?

281 Concluding Remarks

It seems like ______, ______and ______are places/spaces/contexts that play in big role in your everyday life with narcolepsy. The next time we meet, if you are comfortable with it, I want to meet at a place that will let us talk more about one of these aspects of your life. Which means we can meet ______, ______or ______. Which one is the most comfortable and convenient for you? Can we set up a time right now? I will come with a camcorder and a voice recorder, but it will be up to you (and the space) which one I use.

Notes:

282 Interview 2: An unstructured (walking) interview

Interview Objective: To collect narratives and observations of how their body interacts with a particular place, space or context. People with narcolepsy will have triggers and dispositions that are tied to these places, spaces and contexts. Examples of possible places, spaces or contexts include: the car, a classroom, at work, at an empty entertainment venue, at a library, in their neighborhood park, in their kitchen or another site of domestic responsibilities, at a sports venue, at a furniture store, at a book store, at a restaurant or bar, at their gym, at a lighting store, at a home depot, a mattress store, their bedroom, at a mall or shopping center, an art gallery, a workshop, a flea market, early in the morning, late at night, the middle of the day.

Introduction: This interview will be a little different from the last one. Instead of me guiding the interview, I want to let you determine what is important about this place and how it affects you. I will take notes and ask questions, but the story you want to tell about this space and others like it is up to you. The video will only be used by me and will not be shown to the public without your written consent. If you don’t have any questions, lets get started: Tell me about this place again.

Probes & Follow-up Questions

1. Who do you come here with? 2. Who knows about this? 3. Are their any unconscious behaviors or habits that are connected to this place?

283 4. Does this space create anxiety or any other negative impressions? 5. How is what you do here different from how other people (non-narcoleptics & stranger) use this space/place/context? 6. When your symptoms surface here, does it mean anything different than when they surface at other places? 7. What do you avoid here? Why? 8. What changes do you notice in your level of alertness, clarity, and communication when you are here? 9. Are there things you love about this space? Tell me about them. 10. Is it different to be here alone versus with a friend or with me? How is it different? 11. Does this place/space/context help hide the aspects of your condition that would be more obvious in other contexts. 12. How would your life be different if you could never come here/had to come here everyday? 13. Do you think other people with narcolepsy have similar attitudes about this place/space/context? Why or why not? 14. In the future, if you could come here everyday/get rid of this place, how would your understanding of narcolepsy be different? How would your relationships change? 15. Are you reticent about talking about this place/space/context with others? Why or why not? 16. Did you have any after thoughts once we finished our last interview? 17. Do you have anything else you want to share with me?

Thank you for agreeing to participate in this project. I have learned a lot from listening and watching you. If I have any questions or would like to interview you again, may I contact you again?

Do you have a pseudonym you would like to use in the project?

Do you have any questions for me?

284 Appendix B: Demographics Form

Narcolepsy and Pseudonym: Everyday Life Date: Time: Location: Please take a moment tell me about yourself and your experience with narcolepsy. Demographics 1. What is your Relationship Status? 5. What is your highest level of education? □ Married □ High school/ GED □ Single □ Some College/ 2-year degree □ Divorced/Separated/Widow □ 4-year degree/ Bachelors degree □ Engaged □ Graduate education/ Graduate degree 2. What is your gender? 6. What race/ethnicity to you most identify with? □ Male (Select as many as needed). African American/ Black □ Female □ White/ European American □ Other ______□ □ East Asian or Eastern Islander 3. How old are you? ______□ South Asian or Middle Eastern □ Hispanic 4. Are you the primary income for your □ Native American household? Other ______□ Yes □ □ No Narcolepsy Diagnosis 7. What age were you when you were 10. At what age do you recall first experiencing diagnosed with Narcolepsy? ______symptoms of narcolepsy? ______

8. What year was your diagnosis? ______11. What diagnostic test(s) were used in your diagnosis? Select as many as needed. 9. What was your diagnosis? □ Night sleep test □ Narcolepsy without Cataplexy □ Day sleep test □ Narcolepsy with Cataplexy □ Genetic/blood test □ Idiopathic Hypersomnia □ Other______12. What medications are you currently on? 13. Have you ever attended the Columbus area □ Adderall or Ritalin Narcolepsy Support Group? Yes □ Nuvigil or Provigil □ No □ Other Stimulant (s) □ ______□ Antidepressants/ SSRIs 14. How did you hear about this project? ______□ Facebook/ Support Group □ Sodium oxybate (Xyrem) □ A friend ______□ Email from the researcher □ Other □ Other ______

285 Appendix C: Letter of Invitation

Nicole Eugene, Doctoral Candidate Ohio University, School of Communication Studies 20 E. Union St., Schoonover Center Athens, OH 45701 T: 740.593.3019 F: 740.593.4810 www.NicoleEugene.com [email protected]

Dear Participant,

My name is Nicole Eugene and I am a person with narcolepsy. I am also a graduate student in the School of Communication Studies at Ohio University. I am currently conducting a research project as part of the requirements for my PhD in Health Communication, and I would like to invite you to participate if you have narcolepsy and are over the age of 18.

I am studying the everyday life of people with narcolepsy. To do this I will participate in the Columbus area support group for people with narcolepsy and conduct interviews with individuals with narcolepsy. No recordings will be taken during the support group meetings and any information that I learn about during the meeting will be recorded without identifying information to protect the privacy of those involved in the group. As a person with narcolepsy, I hope to participate fully in the discussions and activities of the group.

If you decide to participate as an interviewee, you will be asked to answer questions about living with narcolepsy in person and/or online. I am interested in asking questions about your social life (work, and leisure), your diagnosis and condition management, and about specific aspects of everyday life. I would like to conduct at least two interviews. The first interview will take place at your home and will be audio recorded. The second interview take place at a location you discussed in your first interview or at your home and may be video or audio recorded. All recordings will be private and will only be available to members of my research team. Please set aside 90 minutes for each interview. You may decline to be video recorded or end any interview at any time.

The recordings will be available to members of the research team only. In research reports and publications you will be identified by a pseudonym of your choosing. Also, potentially identifying details about you life like your hometown, school, place of work,

286 and appearance will be altered to protect your identity. If you feel uncomfortable answering some of the questions, you can decline to respond or end the interview at any time without any negative repercussions. There are no risks or discomforts associated with participation. Although you probably won’t benefit directly from participating in this study, I hope that others in the narcolepsy community and society in general will benefit by learning about people with narcolepsy. Also, discussing hidden disabilities and hidden chronic health conditions can be very important, and these interviews may give you more experience with talking about narcolepsy that can translate into improved self-advocacy and improved health communication skills. No compensation will be provided to research participants.

I understand that some people with narcolepsy are very private about their condition, while others are very open about it. Participation is completely confidential. All recordings and participant information are kept in a secure location at Ohio University. To ensure participant privacy, at no time is this information saved online or saved using cloud services. The results of the study may be published or presented at professional meetings but your identity will never be revealed.

Taking part in the study is your decision. You do not have to be in this study if you do not want to. Again, you may also quit being in the study at any time or decide not to answer any question you are not comfortable answering. My completed dissertation will be published on www.etd.OhioLink.edu and will eventually be available to the public through this electronic thesis and dissertation website. In addition to sharing this with you, I also plan to do a presentation of my research at the Columbus, OH support group.

I will be happy to answer any questions you have about the study. You may contact me at 740-274-2461, or [email protected], or my faculty advisor, William K. Rawlins, [email protected] or 740.593.4823, if you have study related questions or problems. If you have any questions about your rights as a research participant, you may contact Dr. Chris Hayhow, Director of Research Compliance, Ohio University, (740)593-0664 or [email protected].

Thank you for your consideration. I will in be Columbus to conduct interviews before and after the upcoming Columbus support group meetings. If you would like to participate please provide me with your name and cell phone number so I can call to schedule the interview.

With kind regards,

Nicole Eugene,

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