Constructed Bodies, Edited Deaths: the Negotiation of Sociomedical

CONSTRUCTED BODIES, EDITED DEATHS: THE NEGOTIATION OF SOCIOMEDICAL

DISCOURSE IN AUTOTHANATOGRAPHERS’ WRITING OF TERMINAL ILLNESS

TASIA MARIE HANE-DEVORE

Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy

Dissertation Adviser: Dr. Kimberly Emmons

Department of English

CASE WESTERN RESERVE UNIVERSITY

May 2011

CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES

We hereby approve the dissertation of

______Tasia Marie Hane-Devore______

candidate for the __PhD______degree*.

(signed) _____Kimberly K. Emmons______(chair of the committee)

______Kurt Koenigsberger______

______William Siebenschuh______

______Thrity Umrigar______

______Vanessa M. Hildebrand______

______

(date) ___21 January 2011______

*We also certify that written approval has been obtained for any proprietary material contained therein.

TABLE OF CONTENTS

Acknowledgements ...... iv

Abstract ...... v

Chapter One The Editor’s Mark: Autothanatography and Sociomedical Discourse ...... 1

Chapter Two “When will my release come!”: Writing Consumption/ Writing Tuberculosis in The Journals/Journal of Emily Shore ...... 43

Chapter Three A Difficult Entanglement: Negotiating the Discourses of Disease in Eric Michaels’ Unbecoming...... 78

Chapter Four The Myth of Irresistibility: Harold Brodkey’s This Wild Darkness ...... 120

Chapter Five Auto/thanatography and Interpolation in David Wojnarowicz’s Close to the Knives: A Memoir of Disintegration...... 162

Epilogue New Challenges in Print and Online: Autothanatography, Community, and Editorial Control ...... 198

Appendix A Hospice of the Western Reserve Documents ...... 216

Appendix B Transcript of Doctor-Patient Encounter ...... 227

Appendix C Transcript of Online User Post ...... 232

Bibliography ...... 235

iii

ACKNOWLEDGEMENTS

This project would not have been possible without the support of Professors Kimberly Emmons, William Siebenschuh, Thrity Umrigar, Kurt Koenigsberger, and Vanessa Hildebrand. I appreciate their guidance and encouragement, especially in the later phases of my dissertation writing. I am particularly indebted to Kim for helping me organize the chapters and to Kurt for pointing me in the direction of Emily Shore’s journals.

Thanks go to the graduate students on the fourth floor, most especially to those folks who not only helped me see the bright side of difficulty, but who also made me laugh on a regular basis. I am also grateful for Susie Hanson, who, despite working with me for three years, still thinks I’m smart, and tells me so. I will spend my life trying to be as kind as she is.

My unbounded gratitude goes to my wife and kids for spending time with me during the day and for allowing me the space to write and think in the middle of the night. Thank you for brightening every moment of my life and for making it possible to live. You are my best teachers and friends.

I would be remiss if I did not acknowledge the inspirations for this dissertation, my writing professors, all dead too soon, though I hear their voices and see their faces, still, when I write: Reginald Shepherd, Laurie O’Brien, and Caroline Dreyer. Without their faith in my abilities, their friendship, and their encouragement, I never would have tried this PhD thing. Reginald, I haven’t figured out what to do without your fluttering eyelashes and glorious lunchtime dinnertime anytime hugs. I hope you’ve found your “palmful of Persian peaches.” Laurie, you were wrong just once: I was ready for your bald head. (Okay, maybe twice, because I still use colons in poems.) Caroline, just one more midnight cappuccino and flan at Jackson’s and then a drive around town, for old times’ sake. I’m glad you asked. (PS: Cancer and AIDS can suck it.)

Thank you to Advanced Practice Nurse Karen Vekasy at Hospice of the Western Reserve for the generous gift of her time and for sharing portions of Hospice’s Legacy Videos and educational documents. Earlier drafts of dissertation excerpts were presented at the Northeastern Modern Languages Association (NeMLA) and New York College English Association (NYCEA) conferences, presentations made possible through generous financial support from the Department of English at CWRU. The Arthur Adrian Dissertation Fellowship provided much needed time and financial support to complete the first draft of this project. Thank you.

Constructed Bodies, Edited Deaths: The Negotiation of Sociomedical Discourse in Autothanatographers’ Writing of Terminal Illness

Abstract

TASIA MARIE HANE-DEVORE

Bringing together life writing and medical sociology, “Constructed Bodies, Edited Deaths: The Negotiation of Sociomedical Discourse in Autothanatographers’ Writing of Terminal Illness” interrogates the relationships among autobiographical writing practices, identity, and the cultures of illness in the nineteenth through the twenty-first centuries. Using texts by Emily Shore, Eric Michaels, Harold Brodkey, David Wojnarowicz, and Eva Markvoort, I argue that autothanatographies, or authors’ writings of their own terminal illness, explore issues of subjective loss that occurs through bodily deterioration and under external forces of concomitant social and medical stigmatization, often operating in the guise of risk management. Such stigmatization arises from medicine’s attention to pathological physiology and categorization rather than to holistic treatment of the ill subject. This study remedies gaps in theories of the genre by going beyond assertions that autothanatographical texts engage with extratextual influences that propose a shared and thus mutually expansive narrative, as proposed by theorists such as Suzanna Egan and Nancy Miller. Rather, I assert the ways in which the multiple external discourses surrounding disease, or sociomedical discourses, alter the actual illness experience and recorded expressions of the author as demonstrated through editing practices and control, thereby illustrating the challenge of representing the self in autothanatographical writing.

CHAPTER ONE

The Editor’s Mark: Autothanatography and Sociomedical Discourse

Sharon sits up in bed, two pillows propped behind her to keep her back straight

while she recites a poem to the camera, “Litany” by Billy Collins: “You are the bread and

the knife / the crystal goblet and the wine. / You are the dew on the morning grass / and

the burning wheel of the sun” (1–4). The first lines of the poem are taken from a

Belgian poet’s obscure love poem, she explains, Jacques Crickillon’s “Vous êtes le pain et

le couteau, / le verre de cristal et le vin.” Her Archer Heights accent and now-raspy voice send the syllables thudding, and she laughs at her own pronunciation. “My mother used to tell me that I sang through my nose.” After a few moments, she says that the Collins poem reminds her that we are—that she is—the images projected into the world, open to interpretation by others. “[T]he moon in the trees,” she recites, “the blind woman’s tea cup” (25–26). She tells her imagined audience that she identifies with the speaker’s wavering between self-mockery and conceit. She views her body as

another metaphor and a reminder of the precarious balance in which she lives. She

tries to make us understand: “Litany,” like her body, reminds her of the Zen paradox of

being many things at once and yet one thing all the time.

Now finished with the poem, its long list of metaphors and attributes, its final,

poignant return to the first lines, she turns off her oxygen tube, reaches for a cigarette,

and flicks the striker on her lighter. She turns to the camera. The hot heart of the

cigarette gleams. “I’m not supposed to smoke?” She smiles.

Like many people with terminal illness, Sharon has a story to tell. She does not

deem herself a writer in a strict sense, though she is in the habit of writing frequent

letters. When she mentions how much she hates the hospital trips and the

chemotherapy and the radiation, her friends, ever supportive, focus on what she has to

live for and how they admire her strength. They are trying to make her feel better, she

says, to reduce the mental ache they imagine must be present in her deterioration.

Why, then, she wonders, does she feel stifled by the five stages of grief1 and her lack of spiritual revelations? She is trying to make sense of how she got here, how she arrived at this dying. When a staff member at Hospice offers Sharon the chance to make a video in which she can express her thoughts on death and dying, she hesitates for only a moment before accepting. When provided the means, the dying often have a desire to tell their stories. Sharon has seen Silverlake Life: The View from Here (1993) by Tom

Joslin, filmed entirely with a handheld camcorder. She understands the power of visual and spoken text, especially in the instances in which the energy to write is spent breathing or moving gingerly from the bedroom to the bathroom, trying not to tangle an

IV. While she knows that her digital video will not be bound and salable, as a published memoir is, she thinks it worthwhile to produce a record of her experience. The Hospice staff tell her that such a video will tell her story in her words after she no longer can.

1 Elisabeth Kübler-Ross’s On Death and Dying (1969) outlines the “five stages of grief,” popularly known as the “Kübler-Ross model”: denial, anger, bargaining, depression, and acceptance. According to this model, the stages may be experienced in any order any number of times, and not all stages are experienced by each individual. This model was highly popular throughout the late twentieth century, though not without challenge. Most recently, clinical psychologist George A. Bonanno argues against the usefulness of the Kübler-Ross model and the static nature of Kübler-Ross’s stages of grief. See The Other Side of Sadness: What the New Science of Bereavement Tells Us about Life after Loss (2009). 2

A story of dying, an autothanatography, is not the documentation of “how I became” or “what I’ve done,” as in other forms of autobiographical discourse, but, rather, an is: this is what I am (feeling) at this moment.2 This dissertation elucidates the inextricable links among sociomedical discourse,3 editorial control, and the related experiences of the autothanatographer in order to explore the construction and problematization of subjectivity in authors’ illness stories.4 Numerous contemporary autobiographical scholars have noted the multifaceted significance and difficulty of narrating the experiential self in autobiography and in autopathography more specifically.5 Although autobiography engages frequently in discussions of the experiential self,6 the writing of these texts is most often distanced significantly in time

2 I do not deny that retrospection and nostalgia play a part in autothanatography; I only assert that they do not play a primary or even wholly significant part in the scope of the text at large as they do in traditional forms of autobiography. Michel Beaujour remarks that “Autobiographers and memorialists want to be remembered for the life they have led, for the greater or lesser deeds of which they tell” (343). See Michel Beaujour’s The Poetics of the Literary Self-Portrait (1991). Trans. Yara Milos.

3 Sociomedical discourse, as I define and use it in the following discussion, contains both social and medical discourses of disease and illness as they relate to the lived experiences of the person with terminal illness.

4 Throughout this dissertation, I adopt the definitions of and important distinctions between “disease” and “illness” as given by Cecil Helman and Arthur Frank, among others. Disease represents a medical perspective of sickness that relies on biomedical interpretation. Illness, conversely, is the subjective and experiential response of the patient and those around her to her being unwell.

5 Georges Gusdorf in “Conditions and Limits of Autobiography” (1956; trans James Olney 1980) defines autobiography quite succinctly as “the mirror in which the individual reflects his own image” (33). “Autopathography” is autobiographical writing about illness or injury, most often not terminal. G. Thomas Couser offers a lengthy discussion of pathography and autopathography in Recovering Bodies: Illness, Disability, and Life Writing (1997). See also Lars-Christer Hydén, “Illness and Narrative” (1997); Lucy Bregman and Sara Thiermann, First Person Mortal: Personal Narratives of Dying, Death, and Grief (1995); Arthur W. Frank, “Reclaiming an Orphan Genre: The First-Person Narrative of Illness” (1994); and Arthur Kleinman, The Illness Narratives: Suffering, Healing & the Human Condition (1988).

6 For lucid explorations of the experiential self in autobiographical writing, see, among many others, Paul John Eakin, especially How Our Lives Become Stories: Making Selves (1999); Laura Marcus, Auto/biographical Discourses: Theory, Criticism, Practice (1994); Robert Folkenflik, “The Self as Other” in 3

from the events related. Because of the necessarily proximal nature of the production

of the text to the events documented, autothanatographical writing emerges as a more

urgent and immediate account than autobiography not focused on experiences of

terminal illness, a key point in the discussion that follows. This proximity is a marked

difference from autobiography, in which the writing subject retrospectively applies his

or her interpretation of acceptable discursive topics to the text. The

autothanatographer has no such luxury as retrospection, but must apply what is in the

moment to the introspective moment of writing. Susanna Egan, for example, notes that

autothanatography “intensifies the rendition of lived experience, the immediacy of

crisis” (200). The processes of dying make urgent the crises of the present, indeed make

urgent their telling, resulting in an “in the moment” rendition of lived experience and

reflecting the ways in which the author understands his or her sense of self—corporeal

and social—within the confines of the dying body.

While other memoirs may explore painful issues of severe trauma such as drug

addiction or abuse, their written recording often benefits from authorial distance to the

experiences being recorded, thus allowing for a more thorough re-visioning of such

experiences. Further, even if these memoirs are written in the midst of experience,

likening them to journals or diaries, the author ostensibly has the later opportunity to

reflect on this experience and revise its record in order to reflect a particular purpose,

point of view, or aim as dictated by the author. This distance provides the author with a

The Culture of Autobiography: Constructions of Self-Representation (1993); and James Olney, Metaphors of Self: The Meaning of Autobiography (1972). For a discussion of cultural influences on autobiographical writing, see Eakin’s discussion of “the narrative culture of memory” in “Autobiography, Identity, and the Fictions of Memory” (2000) (295–297). 4

potential multitude of perspectives and vantage points from which to write, for there is

little doubt that one remembers an event or occurrence with less factual clarity and

with more reflection upon potential meaning, of cause-and-effect, the further in time

from it one happens to be. In autothanatography, there is so little time between the

experience and the writing of that experience that re-visioning the experience is less

possible at best and impossible at worst (most autothanatographies span a length fewer

than three years and are constructed while the author is in the grip of illness).

It is probable that Sharon is not wholly cognizant of how her storytelling is

shaped by editorial factors or of how such deathbed storytelling negotiates temporal

constraints. She has a desire to tell her story, but that story is also co-constructed by

the editors who alter it through questions she is compelled to answer and, after the

story is told, through editing. The average span of time that one spends in the care of a

hospice varies, though because hospice care is often the last stop in medical care for

patients, the time in care is relatively short. Soon after Hospice workers record Sharon’s

story, she dies. Her son props up her head with pillows. It seems simple. But her

beliefs—about dying, embodiment and herself, even about Billy Collins and the thin

edge between satire and vanity—may be things that we will neither hear nor see nor understand. In Sharon’s case, if she were able to produce her video, the record would be edited, perhaps scripted, the product of a series of questions written by medical personnel in order to guide her answers, they in turn meant to fill in the proper blanks.

The whole enterprise would be inspected by an editor, and the problematic portions would be removed. If the video did exist, even in this form, it would be unavailable for

viewing. The Hospice of the Western Reserve does not allow access to its nearly two

dozen “Legacy Videos” (upon which the above example is based), interviews with

terminally ill patients during their final days. The videos are made with the consent of

each patient. However, patients are not permitted to give further consent for public

viewing of their autothanatographical texts.

The videos are the idea of an accomplished advanced practice nurse who is also part of the facility’s education team, Karen Vekasy. During my visit to the Hospice of the

Western Reserve End of Life Library in Cleveland, Ohio, Vekasy allowed me to watch a few interview clips, each no longer than two minutes. In one powerful clip, a man with hair almost white looks away from the camera when questioned about his experiences as a soldier in World War II. He says, frankly, that there are some things he does not want to talk about. He asks the Hospice videographer to turn off the camera. It remains trained on him for a few moments, and we are shown the side of his trembling face; then the camera’s view recedes, and the film cuts to computer-generated text that tells the story the man did not want to share. Put another way, the autobiographical blanks left by the patient are forcibly filled in, whether he wants them filled in or not. The experiential record that he wants to leave is overshadowed dramatically by the interpolated text placed in the video by Hospice staff. Another video clip shows a middle-aged woman who looks straight into the camera and talks, I am told, for over an hour, her Legacy a religious message to no specific audience. The editing on this video is minimal; there are no interview questions as there are in other videos. This woman, unlike the others, “insisted over and over” on being recorded, Vekasy says, “she insisted

6 to everyone she saw” (Interview, 5/10/2010).7 I ask Vekasy why these videos are made, and she tells me they are made on request of the patient as part of Hospice’s “Legacy

Work.” Certain patients are asked by Hospice personnel if they would like to participate

(the criteria by which one receives an invitation was not disclosed). She reminds me that as long as there is equipment available to play them, these video texts will exist after the people in them have died.

The aim of the autothanatographical record is no different in these videos than it is in written autothanatography. Their intended purpose is to allow terminally ill persons who are otherwise without the ability of textual production a way to record their own points of view in their own words. The librarian presented the issue of limited access to me as a way to protect patients from disclosing too much personal information to “unanticipated viewers,” as well as to protect viewers by shielding them from the harsh and unedited realities of dying and death exhibited through first-hand accounts.8 It is important to note that the videos are kept from public view except in regard to “educational purposes,” which are not clarified in any available Hospice documents. The videos’ existence coupled with access to their being closely guarded raises questions significant to the study of personal record keeping and the purpose of such records. Patient rights are to be privileged. But why is there no system of consent regarding educational use outside of Hospice employees? Further, if the purpose of the videos is to record personal experience and keep it private, why are the videos available

7 All information regarding the Legacy Videos is attributed to this interview on 10 May 2010.

8 See “OHPCO Handouts,” Appendix A. 7 as educational tools to be used at the discretion of the Hospice team? Through these videos, the Hospice of the Western Reserve both fulfills its desire to tell stories of dying and furthers its mission of providing nuanced and individualized hospice care to those in need. Hospice is also fulfilling its own need to edit first-hand accounts of dying, to both collect and present accounts that reaffirm its own (and society’s) projected view of “the good death” as the death without pain, the death that brings peace and comes only after the valiant struggle to live has borne out its course.

As their collaboration suggests, both the Hospice staff and the patients believe that there is a need for this documentation. However, the conflict of interest or aim in creating these texts is apparent in even these short clips. The WWII soldier’s story is changed by the insertion of events that he pointedly wants to omit. There is a question as to whether the traumatic event that the text describes has contributed to his current battle with dementia. In fact, that I can refer to this man only as a soldier is indicative of just how in control of his story these medical editors are. In a similar vein, and while not presented to me as discomfort, Nurse Vekasy’s repeated assertions of the religious woman’s own insistence on being left alone for over an hour to record her message demonstrates just how distressing it is for Vekasy that this woman does not participate in the scripted dialogue set out for her by Hospice guidelines. Vekasy argues that the videos are highly diverse, varying in content, as shown above, from monologues without specific audience to personal and private messages aimed at a particular audience such as a granddaughter or friend. Most videos are edited to follow a script by means of a

8 set of questions posed by an interviewer.9 The interviewee answers the questions, and the video is subsequently edited with as much or as little input from the patient as he or she desires. However, the majority of this editing input is concerned with the introduction, musical background, still photos, or individual slide backgrounds on which the video appears rather than with the interview content (Vekasy). The content of the videos is kept within a Hospice-controlled frame as much as possible (through questions, through editing), lest the subject decide to contradict the sociomedically conceived model of the patient, one that dictates a specific set of acceptable questions, answers, and concerns.

As demonstrated in the above discussion of the Hospice videos, this dissertation’s taking up of the theoretical fields of autobiography and sociomedical discourse will allow for a focused and nuanced reading of the complicated texts of self- narrated dying. Overall, the dissertation provides overdue attention to the burgeoning field of autothanatography, whose deeper appreciation is essential for broadening current understanding of autobiographical discourse as it relates to the multifaceted influences of terminal illness on authors’ sense of subjectivity. Autobiographical texts blur and complicate the boundaries between life and death in their documentation and hence literary preservation of the “life” of the writing subject. In other words, in preserving moments previously lived, moments that would, if not documented, dissipate and be forgotten, these texts take “life” from life in order to facilitate its conservation. If autobiographical writing blurs these boundaries, contradictorily

9 See “Conversational Approach to Creating an Ethical Will,” Appendix A. 9

extracting lived experiences from life in order to bring about their permanent record

and thus their immortality, autothanatography complicates these boundaries even

further. Its aim is, in part, to provide an extension of the author’s existence, a way for

him to live on in the text, as any other autobiographer. In other ways, however,

autothanatography’s goal is not to provide the illusion of immortality but to foreground

the illusion itself, to investigate its contours even while playing into it literarily through

the act of recording. This is not merely death documented and packaged in

consumable, readable bits fit for a public audience easily made nervous by the reminder

that all bodies die (autobiographers die, we die) and hence that death is the

unavoidable culmination of life. Autothanatography highlights the dying body, but also

the fragmentation and politicization of the bodily construct in regard to personal and

cultural identity, particularly, though not only, when it is dying from an appreciably stigmatized disease such as HIV/AIDS or cancer.

Autobiographical texts have long been looked to as historical documents,10 and

this muddies the fact that every autobiographical text is written with authorial bias

regarding the situations and events depicted. Autobiographical writing frames the self

through memory-story—the creation of a subjective set of truths, an emphasis on

chosen history, and a bit of writerly imagination—but the authorial self at the time of

writing is what shapes the text. In order to understand autobiographical writing, one

must determine how these surroundings assist in creating the story of experience.

Regarding autothanatography, a logical assumption might be that, because it is written

10 One notable example is Samuel Pepys’ private diary (1660–1669), which has long been held as an important primary source for the English Restoration period. 10 relatively “in the moment” and thus relies less on memory-story than does reflective autobiography, is a more reliable account of personal experience. Dying is, after all, a personal undertaking in which one finds himself utterly alone and unable to share the corporeal experience with the living and ostensibly “healthy” even while surrounded by others. One might expect the writing of such an event to be unmistakably the author’s own. I argue, however, that the writing of autothanatography is just as subjective as other forms of autobiographical writing regardless of its primary non-reliance on memory-story. More importantly, what fulfills the creative function of memory-story in autothanatography is sociomedical discourse. That is, while the event or detail from or about which a writer writes may be a personal one, not applicable to any other human being, it also contains and is shaped by a cultural collective memory of sociomedical discourses. As in autobiographical writing, the author self-edits in the act of writing. In autothanatography, that editing enforces the text’s adherence or challenge to the sociomedical discourses of disease and illness. While a story may speak or write a subject into a specific position in autothanatography, that position is edited and

(re)constituted by sociomedical events and ideologies with which the author interacts.

Autothanatographical texts have at their base the attempt to claim authority over a recorded expression of one’s own terminal illness experience and over one’s own bodily representation. Harold Brodkey summarizes aptly when he remarks, “I don’t see the point of leaving testimony in the hands or mouths of others” (epigraph, This Wild

Darkness). Textual media available for the dissemination of autothanatographers have changed over time. Letters, diaries, and journals have been joined by book-length

works, videos, and, since the 1990s, blogs, which evolved from the online journal

format. While the media of autothanatography have changed or been supplemented,

so, too, have individual reasons for writing terminal illness stories. John Keats, writing in

the early nineteenth century, left a promising career in medicine in order to devote his time to poetry and to live the life of a poet, the demonstration of Keats’ poetic voice overtaking the voice of medicine. However, Keats’ poetry takes up the topics of disease and illness often, as do his later letters when his own consumptive symptoms manifest.

Hermione de Almeida argues that the figures on Keats’ Grecian Urn (“Ode on a Grecian

Urn,” 1820) illustrate the false energy that precedes exhaustion and death. The figures are locked in a state of feverish overexcitement and sexual frustration and demonstrate the physical signs that medics of Keats’ time would have recognized “as the particular terminal symptom of the exhausted but unnaturally excited consumptive patient” (119).

Fewer than twenty years later, the voice of the writer is taken over by medicine.

In the early nineteenth century, Emily Shore, like many other persons of her era, began her numerous journals (1831–1839) as a personal record of her social, natural, and political interests and daily encounters. It was not until she manifested symptoms of consumption that she began documenting her illness experiences in these journals, incorporating their record with increasing frequency into her daily notes on other subjects. Writing of her illness must have seemed a natural enough activity given her already well-established writing habits at the time. The same might be said of Marie

Bashkirtseff, who wrote her French-language journals (1873–1884) in the mid- to late- nineteenth century as a record of her personal, artistic, and political beliefs, only later

incorporating entries that detailed her dying, as did Emily Shore, from tuberculosis, the

curse of that and previous centuries.11 Significantly, both women are aware of the

possibility of publication of their writing, so these journals were written in part with a

public audience in mind.

That these early illness accounts were outcroppings of journals in progress and

not discrete records of illness suggests two things. The first is that much published

autothanatography of any length is written by those who already write and publish, and

this has changed little over the last two centuries. The exception, of course, is blogs, which have only recently begun to change this dynamic, allowing anyone with access to a computer and the Internet to self-publish stories of illness in open-access format,

often for no cost to the writer or the reader. 12 The second is that the cultural environments in which the authors lived and died were not as open to public autothanatography as they are in the late-twentieth and early twenty-first centuries, when autothanatographical memoir has become a well-known and accepted genre of autobiographical writing.

By the mid- to late-twentieth century, autothanatographical writing seems not only accepted, but also widespread, and the reasons for writing have become more particular, the language used more assertive of rather than reflective on the illness experience. Anatole Broyard writes in Intoxicated by My Illness (1992) of his fascination with his body during his dying of prostate cancer. Emmanuel Dreuihle uses the

11 Excerpts of the text have been translated into English as The Journal of Marie Bashkirtseff (see, for example, the entry for 30 December 1882) (1889).

12 For a discussion of illness weblogs, see A. F. Bingley, et al, “Making Sense of Dying: A Review of Narratives Written Since 1950 by People Facing Death from Cancer and Other Diseases” (2006). 13

metaphors of war unrelentingly and on every page of Mortal Embrace (1988), interrogating the processes and dehumanizing experience of dying of AIDS. In

Unbecoming (1990), another AIDS memoir, Eric Michaels tells the reader that the purpose for his diary-keeping is so that he “might serve to keep another set of definitions going” against what he argues are the “quite barbaric ones that were inflicted in these last few days, through the rubber gloves, face masks, goggles, and an inventory of tropes assumed lately by medical practice to deal not so much with disease

(which, after all, is imaginable in some sense as well), but more evidently, no less, with sin and retribution” (5). In short, Michaels writes his autothanatography as a reminder to himself and his readers that he is not the pariah that his social, medical, and political encounters suggest he is. Similarly, Derek Jarman and David Wojnarowicz, both artists and filmmakers, write their autothanatographical texts with a focus on the sociocultural implications of having HIV/AIDS in England and America, respectively. Journalists Oscar

Moore and Ruth Picardie have turned their autothanatographical newspaper columns into monographs, both of them centering almost exclusively on the bodily intersections of physiological and psychological aspects of illness, HIV/AIDS and breast cancer in that order. Picardie’s text Before I Say Goodbye (2000) is supplemented by a collection of emails to and from friends and by entries from readers, a sort of dis-jointed joint authorship. More smoothly written is the joint venture of Sandra Butler and Barbara

Rosenblum and their co-authored story of Rosenblum’s breast cancer and illness Cancer in Two Voices (1991). The text offers readers a glimpse into both the terminally ill person’s experiences with illness as well as her long-term partner’s experience with

14 another’s illness, which engulfs her life, as well (Butler was diagnosed years later with the same disease, which killed her). Many more autothanatographies have been written than those I mention, of course, the list of titles too lengthy to include here.

What is common among many of the texts is that they challenge the parameters of traditional autobiographical self-representation in their focus on individual embodiment. Traditionally, Derek Duncan observes, “Autobiography was the province of those whose lifetime achievement released them from their earthly matter. The successful autobiographer presented himself as a unified figure able to cast a knowing backward eye over his life and its mission” (“Corporeal Histories” 370). Thus, the

“formal constraints of the genre were not simply aesthetic” (370). In fact, historically, the autobiographical author is intended to function in the text as an introspective and constant subject, at once the creator and created “proper” subject, as well as the text’s unifying element. An autobiography is the attempt, most fruitful during the

Enlightenment, to provide a record of one privileged man’s exemplary personal experience. To this end, Paul Smith maintains that autobiography “cannot be underestimated as a privileged form of ideological text wherein the demand that we should consist as coherent and recognizable ‘subjects’ in relation to a particular knowledge appears to be rationalized” (105).

Many studies in autobiography recognize and allow for the integration of historical facts and cultural occurrences into the autobiographer’s tale, given that one accepted basis for autobiography is to reflect the historical and social times in which the author lived. However, these inclusions in no way were meant to step outside of the

15 accepted norms of form or function in regard to the autobiographical mode (Gusdorf).

An autobiography was a life’s story told, and the author’s life was one which the reading public was to admire as extraordinary and, if possible, attempt to emulate. Thus, the practice of autobiographical writing was not only a means of self elevation, but also a practice with substantial pedagogical merit. Enlightenment tradition puts forward the autobiographical subject as inhabiting the spatial and temporal positions of ideal human representation, in the way that, for instance, Benjamin Franklin or John Stuart Mill occupy the representational space of proper Enlightenment subjects. They are pragmatic, self-motivated, exemplary (white) hu(man)s with a desire to pursue scientific and humanistic knowledge through natural exploration. Historically, social marginalization discouraged autobiographical writing by disadvantaged and minority groups, as those outside of the accepted ideal were not contained within the recognized social boundaries of autobiographical discourse. Even confessional autobiographies were written by people who, though they may have made past mistakes, were exemplary individuals in one sense or another.

Entering into the mid- to late-twentieth century, the philosophy of the autobiographer as ideal subject has been challenged as more non-traditional autobiographers pen stories that center not on idealized (Western) representations of one’s ingenuity and achievements, though certainly those exists in great numbers, but on stories that challenge the acceptance of that idealized subject position as the only one from which to write. It makes sense, then, that autobiographers would take up the various forms of Otherhood forced upon them by the historical exclusion of their

autobio-authorial subjectivity. Duncan maintains that for “those born into the wrong

body”—such as persons of minority or lower-class status, women, or those with

disabilities or disease—“life and its writing could hardly avoid confronting corporeality

as a significant and signifying fact of life; it was after all the body that signaled the

difference” (370). An increase in the range of writers asserting their autobiographical

voices prompted an according shift in the focus of many autobiographical texts. As a

result of this shifting focus, postmodern and contemporary critical interest in

autobiography has shifted, too, from concerns regarding the model self of traditional

autobiography toward the examination of embodiment and the ways in which

embodiment shapes and is shaped by social relations and cultural interpretations.13

When engaging autobiography as social and cultural critique, as numerous autobiographical and autothanatographical texts do, there is obvious danger in critics’ tendency toward essentializing the writing subject’s voice and experience. Namely, that in doing so, one may limit textual interpretations to those discourses in which Othered subjects appear to fit easily (e.g., labeling Maxine Hong Kingston’s The Woman Warrior

(1975) a “Chinese-American” autobiographical memoir may limit interpretations of the text that may not fit into a preconceived idea of what it “means to be” Chinese-

American, subsequently calling into question a text’s “authenticity” as it relates to a

13 For discussions of embodiment in relation to autobiographical writing, see Sidonie Smith, “Identity’s Body” in Autobiography and Postmodernism (1994); “Material Selves: Bodies, Memory, and Autobiographical Narrating” in Narrative and Consciousness: Literature, Psychology, and the Brain (2003); and Subjectivity, Identity, and the Body: Women’s Autobiographical Practices in the Twentieth Century (1993). See also Derek Duncan, “Solemn Geographies: AIDS and the Contours of Autobiography” (2000). For discussion specifically related to disease, consult G. Thomas Couser, Recovering Bodies: Illness, Disability, and Life Writing (1997); Anne Hunsaker Hawkins, Reconstructing Illness: Studies in Pathography (1993). 17 reader’s expectations). In accordance with this line of thought, Betty Bergland argues against not only single-voiced discourse but also double-voiced discourse as restrictive, observing that it engenders a discourse of limiting and ideologically fostered polarities—

“oppressor” and “oppressed,” say—that is unhelpful in examining the multiple voices of the writing subject in autobiography. This double-voiced discourse, she argues, fails to problematize experience and “mask[s] the postmodern claim that discourses shape the very way in which we experience the world” (134). She continues, arguing that in a pluralistic society “we must challenge the notion of the humanist and essentialist self at the center of the autobiography and recognize the multiply situated subject in autobiography, socially and historically shaped” (134).

To be precise, the tendency in the perception toward essentialization of the

Othered autobiographical subject works to naturalize her or his experiences, effectively locking her or him into a particular discursive frame. The autobiographical subject in such a construction is consequently limited to assigned roles within autobiographical discourse. Thus, a “Latino” voice and experience is found in a “Latino” autobiography;

“gay” experience produces a “gay” voice in which to articulate a “gay” autobiography; and so on. This naturalization discounts the complex web of interactions and occurrences that make up the autobiographical subject’s voice and experience, as well as makes assuming multiple subject positions difficult for the author (e.g., Audre Lorde’s wanting to write as a woman and/or a breast-cancer patient and/or a feminist activist and/or a Caribbean-American and/or a lesbian and/or a legally blind person and/or a poet, etc.). As one might imagine, this issue becomes especially problematic in

autothanatography. The autothanatographer often already feels quite restricted in the

scope of expressions of daily experience, as does the reader in what she expects to find

in a story about dying.

It follows that Bergland’s critiques of the restrictions imposed by double-voiced

discourse are made all the more poignant when applied to autothanatographical writing, in which the subject is engaged in a constant struggle with a double-voicedness

of sociomedical discourse that reinforces polarities of “healthy” and “ill,” “non-patient”

and “patient,” and “subject” and “object.” Rather than placing health and illness on a

continuum, one with gradations, sociomedical discourse positions these terms and their

practical meanings as oppositional, based, often, on the presence or absence of disease.

The materiality of the terminally ill body and the disease from which the

autothanatographer suffers translates into an often supposed and limiting materiality of

illness experience at the expense of one’s subjectivity. In other words, the body is

treated in discourse and in practice as an object rather than as the corporeal

manifestation of a holistic subject that needs recognition both in and outside of the

boundaries of the body. Autothanatography functions as an attempt to pronounce

one’s own voice and subjectivity as loudly as or louder than the position of object

enforced by the sociomedical discourse that surrounds the autothanatographer, indeed,

that surrounds us all to a greater or lesser degree.

In analyzing sociomedical discourse in autothanatography, as well as how

autothanatographers negotiate its influence through writing and editing practices, it is

necessary to take up a functional definition of the body, one that might usefully clarify

its presence and significance in autothanatography and in the chapters that follow.

Drawing on feminist philosopher Rosi Braidotti’s idea of the body as “an inter-face, a

threshold, a field of intersection of material and symbolic forces . . . a surface where

multiple codes of power and knowledge are inscribed” (Patterns of Dissonance 219),

Derek Duncan contends that the body may be understood as “the material meeting-

point of multiple discourses,” the “mobile and mutable space that charts the real (but

also the symbolic) place of the self” (372). Not merely biological nor, Duncan notes,

“totally subsumed within a culture” (372), the body provides one a base from which to

experience the world and on which the world projects its various cultural codes. More

than just a material site, the body is a mark “of the embodied nature of the subject

[and] thus becomes the site of proliferating discourses, forms of knowledge and

normativity” (Braidotti, “Body-Images” 18). The body of the autothanatographer is thus

the tangible threshold, the borders of the self on which the multiple discourses of disease and illness are applied and about which autothanatographical writing is founded. In conjunction, we might also view the body as a socially and medically mediated site onto which various social, cultural, medical, and political fears about disease and the loss of health are projected. The body is a tangible and, like autobiographical writing, an intertextual field of engagement with the various discourses which surround the autothanatographical subject.

It is from this perspective that this dissertation examines questions regarding what it “means” to write about (or record) a quickly dying body; of what, exactly, is lost in the professed losing of one’s self-identity through deterioration; of the

autothanatographer’s newly acute awareness of the elaborate contours of the flesh, as

well as its textual representation; of who has the ability to explore and explicate—and violate—it through discursive means; and, perhaps more pervasively, of the body’s being subjected to invasive sociomedical and/or textual scrutiny both with and without a person’s consent. Concurrently, the autothanatographer’s concern lies also in the assertion of his storytelling and writing above that of all others. Some or all of these significant concerns are addressed within each chapter as each text under discussion in this dissertation mines the author’s dying body for its subject matter. Moreover, the paradox of autothanatography’s simultaneous denial of and participation in the

objectification inherent in such discourse and practice is one that might be extrapolated

from and applied to the broader context of health and illness in the practical world, not

just in literary autobiographical studies.

The sociomedical constructions of disease and illness (with “health” as the

implied obverse), the concern of this dissertation, deal primarily with the lay experience

of disease and illness as they affect the patient at several interactive levels. The

sociomedical discourse of illness relies on what sociologist Phil Brown terms “a symbolic

interactionist approach” that involves “a multiplicity of social forces” rather than a given

biomedical fact. It includes a “set of understandings, relationships, and actions that are

shaped by diverse kinds of knowledge, experience, and power relations . . . constantly in

flux”; these consist of “the impact of the underlying social stratification system, and the

roles of professionals, institutions, governments, media, pharmaceutical companies,

patients, and people with illness and disabilities as well as their families” (37). As Brown

21 articulates, while the lay experience of illness cannot be completely separated from clinical interactions, it is not one that is formed solely in interactions between the patient and the medical establishment but is shaped in various social and political interactions, as well. In understanding this phenomenon, one might consider issues of disease manifestation and its relation to identification and subsequent action, and who benefits from such identification and action.

Also of import is the way in which a person’s experience of illness affects the disease course and the social understanding of both the disease and the related illness in question. Brown observes that “Studies of the lay experience of illness stem from a

‘bottom-up’ approach in sociology, which places people in the center stage, as active knowers,” suggesting that lay persons assist in the formation of sociomedical knowledge and constructions of illness experience (46). Autothanatographical writing, of course, is a manifestation of the author’s desire to control these illness constructions. Brown bases his statement on three basic premises as espoused by Herbert Blumer’s text of

1969 Symbolic Interactionism: “(1) people act on the basis of meanings that things have for them; (2) meanings derive from social interaction; and (3) meanings are modified by their interpretations in practice” (qtd in Brown 46). This symbolic interactionism depends on social structures, as the interactions which provide the framework for meaning making are defined in large part by ideological structures in society (including class, sexual orientation, race, sex, and familial status and participation).

An example of this exchange between social and medical conceptions of illness is the growing trend in psychiatry toward linking mental illness with biological

phenomenon (colloquially termed “a chemical imbalance”) uncoupled from social

etiology or exacerbation. This link between mental illness and biology has been

explored in numerous memoirs on subjects such as depression and bipolar disorder, as

authors take up the sociomedical discourse of disease and apply it to their own texts

and experiential understanding. In the United States, the result of this link has been an

overreliance on prescription medication for the individual and a movement away from

other therapies that perceive the individual within the social collective. In short, the

medical concept of the biological etiology of illness has translated not only into

particular medical action (e.g., diagnosis followed by the prescription of drugs) but also

into particular social action (e.g., the perception that one, or one’s situation, may be

“fixed” with drugs) that at the same time neglects the social responsibilities and repercussions of such methods (e.g., the prescription of pharmaceuticals relegates a difficulty that contains a social component into the exclusive arena of medical/pharmaceutical science).

One, but certainly not the only, way in which we might interrogate these processes is through a discussion of the bidirectional social and medical exchange inherent in understandings of danger and risk, and how these understandings play out in autothanatographical texts. While perhaps not immediately obvious, the above example regarding mental illness also functions as an example of actions influenced by sociomedical discourses of danger and risk as they converge with discourses of disease and illness. That is, if a person with the “disease” of “mental illness” might be treated with a drug and made “safe,” then, the understanding goes, that person may remain a

member of society without negative social repercussions or social responsibilities. The

physiological and social elements of the illness are viewed and treated as a manageable medical problem. Autopathographies, or self-stories of pathology, suggest as much.

Should a person refuse pharmaceutical treatment, or should that treatment be denied

him (because of lack of funds or access to care), then the problem is viewed by society

as a social one with social repercussions (e.g., the potential for violence, the social and

political untidiness of homelessness). The attempt is one of both privileging medical

treatment for disease and discounting the wider aspects of illness experience in favor of

objectification. Sjaak Van Der Geest and Susan Reynolds Whyte call this reliance on

pharmaceuticals “the charm of medicines,” for in them healing is objectified, and illness

is put in the context of disease/object rather than of subject experience. Further, and

more to the larger point within sociomedical discourse of danger and risk, medical

therapy becomes disengaged from social elements, enhancing the perception of illness

as something tangible rather than experiential. In a practical sense, the perception and

treatment of disease becomes erroneously synonymous with illness, the disease

metonymic for the subject’s experience, and sometimes for the subject him- or herself:

he’s a celiac; she’s a consumptive. To a greater or lesser degree in autothanatographical

writing, authors tend toward identification with disease, calling into question their

assertions of individuality and subjectivity within the confines of their experience.

The interplay between the social and the medical understandings of disease and

illness are significant and, of course, useful to a degree. As anyone who has had the

common cold may observe, there are particular and inextricable links between the

social and medical treatments of a disease and thus of one who has contracted that

disease. When one has an upper respiratory infection, for example, one is informed through both medical and social knowledge to avoid close contact with another person because of the danger of passing the virus along its medically and socially accepted pathways of transmission. This is not to say that medical and social views surrounding a particular disease or condition must always complement one another, but, rather, that one may not be extracted simply from the influence of the other. Just as medical constructions of knowledge influence social action—medicine tells us that the cold virus lives in our moist excretions such as sneezes, so we sneeze into tissues or inner elbows to avoid sneezing on others for fear of disease transmission—social actions and beliefs

influence medical knowledge and perceptions. For instance, society tells us that

homosexuality is taboo and unclean, heterosexuality the gold standard by which moral

and bodily cleanliness is judged. For the first ten years of the HIV/AIDS pandemic, then,

medicine fails to research much of heterosexual transmission of an “unclean” and

“homosexual” disease.

Sociomedical discourse relies on the communication of danger and of the forms

that danger takes, measured often and most understandably in terms of risk, which

itself carries a degree of stigmatization. The intrusion of sociomedical discourse into

accounts of death and dying may be somewhat predictable given that, as Mary Douglas

argues, “anomalous events may be labeled dangerous” (Purity 49). Certainly one would like to think of terminal illness as anomalous rather than routine. This atypical quality appears as a motivating factor behind autothanatographical writing in which the

irregularity of the body manifests in the irregularity of the story being told. The

correlations between danger, in the form of risk, and stigmatized blame are thus salient

in terms of identifying sociomedical concerns in autothanatography.

The concept of “risk” is multifaceted, as is its impact upon sociomedical

discourse. Risk is a classifying device that establishes limits, or categories, within which

a certain disease’s manifestations may be viewed as normal (e.g., blood in the sputum

of a pulmonary tuberculosis patient) or unusual (e.g., a diagnosis of breast cancer in a

woman under forty years of age). In sociomedical discourse, risk also determines by

what route or type of person a disease can travel or by which it can be transmitted. In

other words, risk defines the domains of the sociomedically possible and impossible (a

salient illustration of the implications of possibility is the dearth of medical study

regarding lesbian contraction of HIV/AIDS, even after more than twenty-five years of

HIV/AIDS scholarship). This possibility, in turn, influences all manner of social and medical decisions made about a disease, its projected course, and, quite importantly, the persons who are infected with or carry it.

One way in which risk possibility functions is by way of classifying blame, that is, by way of producing causality through agency. For example, in relation to sociomedical discourse surrounding HIV/AIDS and other communicable diseases, risk dictates “natural causality,” or the idea that one who belongs to a particular risk group (e.g., gay males) is thus one who participates in sociomedically defined risk behaviors. In turn, this individual knowingly leaves open the possibility of disease contraction through behavior so that if infection does occur, the person is to blame, for his “dangerous” or “risky”

26 behaviors have prompted his contraction of the disease. The sociomedical implications are that the disease is not dangerous, particular groups of people are, a notion that results in stigmatization of the individual. In autothanatography, stigmatization can and often does manifest in three inextricable ways: social-, medical-, and self-stigma, each of which influences the author’s accounts of his illness experience. Stigmatization influences interactions in as much as the human desire to steer clear of risk—which is made observable in those stigmatized—influences how one acts and reacts when risk is perceived. In terms of self-stigmatization and medical oversight, such classification may influence how one perceives one’s ability to, for instance, ask for medical care or to question a particular course of treatment. In terms of social oversight, it influences the associations and interactions one allows (the distancing of one’s reputation from gay sexual behaviors, e.g.).

The sociomedical response to risk is thus also a method that accounts for the order it produces (its targeting and classification of particular risk groups) and for the construction of natural causality, or the idea that one may be “deserving” of a stigmatized disease because of one’s actions (certainly a subject of much HIV/AIDS and cancer autothanatography). I am not speaking of proven-transmissible diseases only, as a point of fact, though transmissible disease, especially of a sexual nature, is often the most evident demonstration of these issues, as it is in the texts examined in this dissertation. Multiple cancers, for example, have their numerous agents of stigmatization who act with blame-the-sufferer rhetoric, blame for smoking, for sexing around, for not taking vitamins or eating enough fiber, blame for being too poor (and, it

is implied, lazy or otherwise deviant) and living near a power station or a Superfund site.

The collective desire is to identify a cause of which one can steer clear. Society advocates risk reduction through fingering the other guy’s bad habits or unfortunate— and somehow self-imposed—circumstance. It may be a natural enough desire, but it is one that inhibits our understanding of illness experience as formed in a collective rather than in a medical vacuum. In this context, many autothanatographers write their way through this stigmatization (to explain this “risk”) in an attempt to remedy the lack of understanding that produces it.

Together, risk and stigmatization provide an important link between the concept

of sociomedical danger and its implications. It provides, first, categorization through

difference (non-male, non-gay, non-aged); second, a narrative regarding how a disease

may or may not be transmitted (recall the lack of study regarding female-to-female

transmission of HIV); third, a construction of a past to explain the present (often by way

of showing that the risk of contraction had been present long before a disease’s

discovery in the patient); and fourth, a reconstruction of agency, or blame through

action, from relations of natural causality (routes of transmission, what or who to

avoid). Given these points, it is clear that risk and stigma must play a large role in the

construction of one’s social-, medical-, and personal subjectivity in

autothanatography.14

14 For a broad discussion of risk and its classifications and behaviors, please consult Alex Preda, AIDS, Rhetoric, and Medical Knowledge (2005); David Denney, Risk and Society (2005). Dennis Altman in AIDS in the Mind of America (1986) relays that early reports on HIV transmission “stressed [gay] promiscuity and the need to reduce the number of partners, ignoring the fact that the relevant question was what acts were performed, not where or with how many” (144). See also Carol Reeves, “Language, Rhetoric, and AIDS” (1996) and “Rhetoric and the AIDS Virus Hunt” (1998). 28

Social and scientific criticism that applies literary and rhetorical theory to

discussions of the terminally ill, most especially in expressions of disease in which the

carrier is regarded as somehow deviant or accountable in contraction (in other words,

stigmatized), is crucial in identifying key sociomedical themes and motifs in

autothanatographical memoirs. Sociologists Lars-Christer Hydén and Howard Waitzkin,

who is also a medical physician, provide important discussions of illness in relation to

(auto)biographical writing and medical discourse. As do theorists such as Arthur Frank

and Paula A. Treichler, Hydén prefers to discuss these topics in the context of doctor-

patient and/or social relationship narratives rather than in autothanatography. He

postulates that illness stories are a viable “means of studying not only the world of

biomedical reality, but also the illness experience and its social and cultural

underpinnings” (48). Offering a historical view of narrative medicine, Hydén notes that

initially “The clinical gaze of the medical profession was focused on the inner bodily

world of the patients” (48) rather than on patient disclosures of experiences. The ways

in which patients were able to articulate their illness experiences were at best viewed as

secondary to the pathological observations of disease and the body as made by medical

professionals, and at worst as wholly insignificant. He further notes that when studies

of what he terms the “social reality of biomedicine and illness” were first initiated, the

“biomedical definition and conception of illnesses constituted the natural starting point.

The patient’s views and actions were linked to this conception by means of terms like

‘illness-behaviour’ or ‘lay-perspective’” (48). These terms, it should be clear, reflect an obvious hierarchic structuring of medical control over the body and experience of the

patient. This hierarchy is a point of struggle in much autothanatographical memoir, in

which the author attempts to reclaim the representation of illness.

Hydén also outlines the burgeoning theoretical importance of storytelling in

illness research, arguing that the probable explanation for such growth is the “greater

emphasis on suffering as a point of departure [for analysis] in social scientific studies of

illness” (52). One might also conclude that the greater desire of researchers to study

such a phenomenon also plays a role in increasing concern. What I find troubling is not

Hydén’s statement of growing interest in considering patient stories, but, rather, his assertion that such an undertaking will facilitate study of “the patient’s illness experience and illness world as a social reality apart from the conception and definition

of illness as formulated by biomedicine” (52, emphasis mine), for they are inextricably

linked, as this dissertation will demonstrate. Hydén’s assertion misrecognizes the

shared impact of social and biomedical discourses on the experiences of and struggles

with subjectivity of the patient.

The argument for the separate realms of social and medical discourse is

troubling, yet it is not one unique to Hydén. Howard Waitzkin writes in “A Critical

Theory of Medical Discourse” that in historical terms, medical discourse generally

excludes critical consideration of social contexts. He maintains, however, that medical

encounters—be they directly or indirectly with medical personnel—tend toward the

conveyance of ideologic messages which support the current social order and, as a

result, have consequences for social control. Sociomedical discourse tends toward the

essentialization of a patient’s illness experience based on issues surrounding disease

diagnosis and medical treatment. The result is often the treatment of a subject as

representative of all those with a particular disease, thus dismissing illness as easily

categorized, generic, and without the nuances inherent in individual experience.

Autothanatography is, like other forms of autobiographical discourse written by those outside the accepted narratives of dominant culture, “about the resistance to prevailing ideologies of sameness that attribute a leaden uniformity to less public lives” (Duncan,

“Corporeal Histories” 370). It asserts the individuality of experience, even in the most universal of processes: dying. I will attempt to walk a fine line in the chapters that follow, acknowledging the necessary individuality of autothanatographical texts while suggesting that we might extrapolate from individual stories a larger understanding of the documentation of illness experience and the ways in which sociomedical discourse influences their record.

This purported individuality is met with a paradox within the prevalence of illness stories: their increasing normalization in mainstream society coupled with the degree to which such stories are kept in check by various social and medical editorial methods. These methods include doctors’ presence with patients on talk shows, the keeping under wraps of end-of-life videos, or the posthumous editing of autothanatographical writing. They seem designed to ensure that the illness representations remain within the social and medical bounds of proper or accepted accounts of disease and illness. Understandably, the terminally ill person is providing a story and offering details informed from an experiential, though not coveted, perspective, one that is quite different from that of a medical professional or even (and

especially) of a family member or friend. In fact, medical personnel, family members, or

friends may feel it impertinent to disclose details from one’s most personal experiences

and may seek to disallow their textual record in order to protect the dying person’s

privacy, albeit misguidedly, or to enforce a sense of decorum they see as lacking in the

patient’s (often “uncharacteristic”) need for disclosure. The prevalence and

normalization of illness texts is not a reflection of the increasingly accepted authority of

the ill person to tell her story of illness experience unfettered by outside constraints: the

experience as she knows it. Rather, it is an indication of the public’s desire to hear

reflections of their own thoughts on and views about disease and illness. Ultimately,

viewers and readers seek to confirm or deny their own perceived risk of “catching” a

disease or “coming down with” an affliction, and they do this through comparison of

their own actions and beliefs to the events and circumstances in others’ texts. In sum,

however, audience members engage these tales of illness defensively as well as informatively, thus sociomedical control of content becomes key in securing a story’s readability.

This public desire to understand the processes of dying, albeit at a distance, may be borne out of the fact that the role of caregiver at the end of life has increasingly turned from one filled historically by friends and family to one filled by medical professionals, often in the hospice environment. The resulting challenges surrounding questions of meaning, value, and relationships with the dying in the context of care they receive are almost solely geared toward the physiological dimension of their selfhood.

Significantly, the ever more passive role of family and friends in providing care to the

dying leaves fewer opportunities for patients to reflect on and consider their own

mortality in discussion with non-medical interlocutors. Perhaps for her patients, Nurse

Vekasy’s Legacy Videos are meant to fill that void. Nevertheless, the videos are a reminder of our cultural fascination with death and dying. But just as importantly, they are also a reminder of our cultural discomfort with stories that focus too much on the dying body rather than, for example, on the valorous fight against death so often lauded in the media. There is no doubt that these particular video interviews are socially and medically constructed texts, for Hospice residents are social subjects, interacting with family and friends, and medical objects, their bodies acted upon by medical treatments and interventions, their stories edited and revised by medical personnel.

Access to the Legacy Videos is guarded, and viewing of “educational” parts of the videos is provided only by a representative from Hospice, the representative synecdochic for the medical establishment with which the person with terminal illness is constantly engaged. This guarding is a striking example of the seemingly all-pervasive

attempt to sociomedically control patient stories and voices. Television talk-news

programs often have as guests patients who have survived or are suffering from strange

or heartbreaking conditions. The patient’s doctors are seated firmly beside him, lawyer-

like, their presence meant to validate the strange tale of disease and illness as much as

to prevent or correct any medically conceived patient missteps in the story. The doctors

are as much participants in the dramatic storytelling as the patient himself. In literature,

books of illness stories sometimes have prefaces or forwards written by patients’

doctors or other medical authorities, as if to testify to the plausibility, the verity of the

accounts. Tales of disease and illness appear everywhere, from secondary school

assemblies (Darius Goes West, 2005–present) to reality television shows (Britain’s Big

Brother’s Jade Goody, Season 3, 2002).

Authors of terminal illness stories have struggled against bodily objectifications concomitant with illness in order to assert their status as discursive subjects. The following dissertation concerns itself most with published autothanatographies, or personal stories of terminal illness experience, written by practiced writers. However, the Legacy Videos provide a relevant and pronounced example of the most fundamental issue of concern in this dissertation, the degree to which sociomedical discourses of disease and illness exert a type of pervasive editorial control over autobiographical illness stories. In regard to the Legacy Videos, this editorial control—evidenced in the control over what information in the videos, the autothanatographical record, is shown and to whom—is overt and immediately concrete: a Hospice worker clicks a button to show a selected audience a clip that the Hospice worker has extracted from the whole.

In other autothanatographical documents, the editing is subtler, such that authors may not even realize the degree to which their texts are adhering to the very ideological influences they attempt to denounce in their claims for subjectivity through textual production. Within the struggle against objectification, the autothanatographers under examination in this dissertation call upon accepted social and medical storied tropes— the sensitive, artistic nature of the consumptive, for example, or the inherently infective and dangerous bodies of gay men—and incorporate these tropes into their own texts.

This incorporation complicates the assertion that one can claim a record of dying

34 experience as entirely one’s own.

Terminal diseases such as late-stage cancers, amyotrophic lateral sclerosis (ALS), and HIV are often the subjects of autothanatographical texts, with diseases such as heart disease, multiple sclerosis (MS), or diabetes remaining largely unexplored in autothanatography.15 The reason for this is likely two-fold. The first is that in typical cancer or HIV texts, the body is spoken of as if it were a stigmatized battleground, a metaphor for the staging of illness or the host of a fight in a way that is not traditionally attributed to diseases such as MS or diabetes. There is no rhetorical “invasion” present with heart disease, no “foreign” objects to dispel with diabetes. There is consequently little to nothing to purge. And yet, the body is not a fortress; it is permeable artifact upon and in which disease takes place and leaves its effects, to be dealt with through illness experience. The second is the expected chronology of disease progression. ALS has a common span amounting to eighteen months to five years of survival, enough time for one to feel the pressure of oncoming death while for some time retaining the ability to attempt to articulate one’s story as it occurs. “Significantly,” remarks Egan, writers of terminal illness stories “who know they are dying, insist that they are also living—from moment to moment, in definitely foreshortened time, in unreliable bodies, and in circumstances that are dramatically, often suddenly, altered” (197). Accordingly, if the restriction of temporality is a concern in all autobiography, in autothanatography

15 These and many other diseases are often though not always lived with for many years without continual complication aside from, for instance, the administration of insulin for diabetes or other minimally bothersome daily activities. Multiple sclerosis itself is rarely a fatal condition at even its most severe. While other of these conditions may be fatal, the prognosis is generally fair to excellent and the lifespan of the individual a long one barring irregular complications or accidents. When death does occur, it is often sudden, as from a “heart attack.” 35 its urgency is made all the more apparent in the landscape of a shifting physical- awareness that prompts a feeling of ongoing uncertainty.

I began this chapter with a discussion of the Legacy Videos of the Hospice of the

Western Reserve in order to highlight an obvious occurrence of sociomedical institutional editing and enforced direction of subjects’ storytelling. The pre-scripted nature of the videos, as evidenced in the interviewer/interviewee questionnaire and guide supplied by Nurse Vekasy, is but one of the innumerable ways in which sociomedical discourse influences personal record keeping in times of terminal illness.

Such transparency is less common in other autothanatographical texts, though the directing and objectifying force of sociomedical discourse remains in full effect. The degree to which each autothanatographer subscribes, knowingly or unknowingly, to these discourses within each autothanatography varies, as would be the case regarding ideological adherence in any set of texts. Each of the four body chapters of this dissertation is a demonstration of the autothanatographer’s negotiations of sociomedical discourse within the autothanatographical story.

I have chosen the texts under consideration in this project because they meet certain criteria in addition to the basic criteria of autothanatography (i.e., an autobiographical text about one’s own experiences with dying). Each of these texts concerns a recognizably stigmatized disease, and this stigma adds additional urgency to the storytelling and subsequent editing of the text, as the autothanatographers and editors adopt the need to “correct the record” through writing and editing, respectively.

Changing views about consumption and tuberculosis are made all the more obvious

through readings of Emily Shore’s journals/Journal (1830s/1898), the stigma of

tuberculosis made especially clear through a comparison of the manuscripts to the later

edited edition. Eric Michaels’ Unbecoming (1990), Harold Brodkey’s This Wild Darkness

(1996), and Close to the Knives (1991) by David Wojnarowicz center on vastly different illness experiences with an equally misunderstood and arguably more stigmatized disease, HIV/AIDS. These four authors are also self-conscious about the act of writing, as demonstrated in textual notes about writing itself or about the possibility of publication after death. In conjunction, editorial interference, either through self- editing or subsequent editing by others, is pronounced, as is the related negotiation of sociomedical discourses of disease that assist in story construction. None of these texts is written on the platforms of religious conversion or overt activism or on the metaphors of war. Such platforms and metaphors complicate texts in useful ways but stray too far from this project’s intended purpose.

In narrowing the list of possible texts, I have excluded many well regarded autothanatographies that meet the above criteria but that prove otherwise unsuitable.

Cornelius Ryan’s A Private Battle (1979) is a devastatingly nuanced book, but the transcribed recordings of which it is made were not, as far as Ryan’s wife knows, intended for later publication. Ryan’s wife (co-writer Kathryn Morgan Ryan) found the hidden tapes after Ryan’s death and constructed the text out of the transcribed recordings and her own recollections of events. Ruth Picardie’s Before I Say Goodbye

(2000) contains private email correspondence, which her husband collected and added to a few of Picardie’s newspaper articles as well as condolence emails received from

others after Picardie’s death. That these two authors do not state their awareness of potential publication is troubling to me, as though, in reading their texts, I am trespassing in a textual space each author thought was inviolable. There is another related issue at stake in excluding these texts: each is co-written to an extent that co- writing becomes central to the stories being told. Sandra Butler and Barbara

Rosenblum’s Cancer in Two Voices (1991) is written in a form similar to Ryan’s A Private

Battle: authors take turns to describe the same illness events from their individual points of view, one ostensibly healthy, the other not (though, like Rosenblum, Butler, too, dies of breast cancer). Likewise, to focus on self-editing and control, I’ve chosen texts written by and about the dying, not the partners of the dying who, like Paul

Monette (Borrowed Time, 1988) and Mark Doty (Heaven’s Coast, 1996), live long

enough to write other books or to produce a series of autothanatographies (Monette’s

Last Watch of the Night, 1994; Derek Jarman’s Modern Nature, 1991; At Your Own Risk:

A Saint’s Testament, 1992; and Smiling in Slow Motion, 2000).

What remain are texts rich in content and concerns that in turn highlight the concerns in subsequent chapters. Focusing on two versions of the journals of Emily

Shore, the original manuscripts of the 1830s and the edited posthumous publication of

1898, chapter two grounds the dissertation in a historic and literary trajectory of autothanatographical writing that stretches back to the early nineteenth century.

Shore’s journals provide a significant example of auto/biographical editing and sociomedical shaping of the written record of terminal illness. Written by Shore in the

1830s and spanning twelve volumes (only two of which have been found), the

manuscripts were heavily edited and published as The Journal of Emily Shore by her

surviving sisters long after Emily’s death from consumption at nineteen. The chapter

concentrates on the processes of writing and editing and the ways in which the illness-

centered contents of the journals/Journal’s later entries textually negotiate the

transformation of 1830s “consumption” into 1890s “tuberculosis.” Shore and her sisters

struggle to suppress individual and unique experiences of illness, instead bending the

text to fit each historically common conception of the disease and its accompanying

storied tropes. This chapter further demonstrates the extent to which the lone surviving

sister, Arabella, strove to make sure that the journals remained consistent with

contemporary sociomedical visions of tuberculosis and the constraints of disease

transmission.

The other three body chapters of this dissertation center on the autothanatographies of those with another communicable disease that, like tuberculosis, has charted a new path within the discourses of social and medical knowledge, HIV/AIDS. Chapter three examines Eric Michaels’ engagement with

HIV/AIDS in his autothanatographical memoir Unbecoming. Michaels outlines his shifting bodily condition in opposition to an ever-pervasive and object-oriented discourse of “tidiness,” which Michaels both finds unconscionable and which he textually engages seemingly without awareness. Michaels understands tidiness as a concept that excises elements of individual and cultural history and experience and instead substitutes a system of homogenization and forced categorization. Michaels’ employment of the concept of tidiness to understand and construct his illness story

demonstrates a breakdown in communication between Michaels and medical

personnel, one that forces Michaels’ textual and editorial negotiation of the objectifying

discourses that surround him as he is dying. As in the example of Emily Shore’s Journal,

Michaels’ text is noticeably edited by his survivors, who interject textual evidence and seek to contextualize his accounts of illness experience. These several layers of editorial practices signify the pervasiveness and felt necessity of negotiating sociomedical discourses in stories of dying.

While Michaels writes against the objectifying discourse of tidiness and its organizational principles that come at the expense of his individuality, Harold Brodkey adopts the objectifying discourse of disease. He textually aligns his past gay sexuality with incestuous and pathological acts of child sexual abuse, re-narrativizing his past and present experiences within a framework that releases him from self-blame. Chapter

four analyzes Brodkey’s This Wild Darkness: The Story of My Death and the self-editing

methods by which Brodkey attempts to portray his experience with dying as

normative—de-pathological, as G. Thomas Couser would say—while simultaneously portraying “homosexuality” as pathological. To be clear, I use “pathologize” in the clinical sense of viewing or presenting some thing, state, or action as medically and/or psychologically abnormal. This positioning is fraught with difficulties for Brodkey as gayness becomes his scapegoat, the bearer of blame for his disease. He assumes the voice of sociomedical theories of HIV/AIDS as he takes control of the story through engaging in self-editing that both denotes his distance from his same-sex sexual

relations (and thus from a great deal of stigmatized activity) and reinforces his current

heteronormative relationship as an opposing ideal. Brodkey’s text uses the frame of

conversion in pathologizing gay sex acts in order to narrativize his illness experience and

to regain some sense of embodied subjectivity in the midst of disease and illness.

Chapter five explores David Wojnarowicz’s Close to the Knives: A Memoir of

Disintegration in view of the larger social scope and implications of autothanatography in reference to collective identity. The chapter’s first accomplishment is to problematize theories of the autothanatographical subject as singular and instead argue for

autothanatographical multiplicity. This includes instances in which individual identity is

bound to collective identity by way of an especially pronounced subjective association,

as in Close to the Knives. The second accomplishment is the demonstration of

overriding sociomedical editorial negotiation in relation to communal, medical, and

political concerns of the author. Wojnarowicz’s expression of experiential subjectivity is

entwined within a collective identity rather than in opposition to it, in contrast to

Brodkey’s This Wild Darkness. In particular, Wojnarowicz’s text interrogates sociomedical theories of risk and contagion in relation to the gay male “body” (with the plural implied in the collective singular) and gay behaviors. Within the sociomedical collective, the gay male body acts as a site of risk which must be contained as well as dismissed without the privilege of voice. However, despite Wojnarowicz’s persistent assertions against the sociomedicalized objectification of gay males, his text relies on a self-editing construct that emphasizes the underpinning of the gay body as dangerous and infective, thereby engaging without refuting the sociomedical complex and thus complicating his own claims.

The paradox of autothanatography’s simultaneous denial of and participation in

the editorial objectification inherent in discourse and practice is one that might be

extrapolated from and applied to the broader context of health and illness in the

practical world, not just in literary autobiographical studies. With this project, I engage

the debate regarding the application of literary studies to fields outside academe by demonstrating the concerns and issues that autothanatographers face, and the final chapter of this dissertation suggests additional concerns in autothanatography. As

Weblogs about dying proliferate on the Internet almost as quickly as Websites offering tools for self-diagnosis, the ways in which writers engage both their stories of dying as well as their readers are changing. Traditional methods of writerly mediation—from authorial revision to external editorial control in the form of editors and publishers—are becoming obsolete. The time between personal experience of an event and the dissemination of a public record of that experience is growing ever slimmer, as dying authors post details of their experiences weekly or even daily. Concurrently, readers’ external editing and evaluation of these experiences is more blatant and immediate: they have the ability to pass judgments or to offer support in the form of public commentary. Examining this relatively new form of public discourse in light of terminal illness experience will facilitate a better understanding of autobiographical self- and external-editing practices as well as of patient experience.

CHAPTER TWO

“When will my release come!”: Writing Consumption/Writing Tuberculosis in The

Journals/Journal of Emily Shore

The journals of (Margaret) Emily Shore were composed in the 1830s and span

twelve octavo volumes written from Shore’s twelfth year to the year of her death at age

nineteen. Shore began writing the journals as a personal account of her various

interests, academic, political, and personal. When she became ill with consumption in

her teens, she quickly turned to the journals to record her experiences with illness as

well as her hopes for a cure. Of these twelve volumes, her sisters Arabella and Louisa

Shore published about one fifth of their contents, first in 1891 and then again in 1898

(by the surviving sister Arabella), both editions heavily edited. Ten of the twelve original

manuscript volumes remain lost. Only two of the original volumes have been located

and identified, each marred with blacked-out passages and the sisters’ editorial asides,

whole sections having been physically cut out from the manuscripts. It is difficult to tell

at what point Shore knew she was writing an autothanatographical account of her dying

since volumes one through six and eight through eleven of her manuscript journals have

not yet been recovered. Among the passages that remain, Shore laces the two surviving

volumes, VII and XII, with accounts of her diet, of the “horrid cough [that] seemed nailed

to [her] lungs as if it could never be removed” (manuscript vol. VII, 10 April 1837), and of

her medically driven escapes to warmer and more suitable climes in which she, her family, and her physicians hoped her symptoms might be alleviated and her life

43 prolonged.16

The two surviving manuscript volumes of Emily Shore’s journals and the condensed and highly edited versions of all twelve volumes released by her sisters in the form of The Journal of Emily Shore together offer an early case study regarding the ways in which medical knowledge and accepted treatments for disease influence the composition and dissemination of one’s illness story. Shore’s sisters turned her collective journals from a concentration on learning to a social diary focused principally on her family and on their friends. Specific to disease and illness, Shore’s sisters omit lengthy passages which, they note, discuss her illness in a manner too maudlin for late-

Victorian readers (but all too recognizable and accepted by early-Victorian readers). All autobiographical texts are mediated, and—because the writing subject is absent at the point of publication—autothanatographical writing perhaps relies on mediators to an especially high degree. All autobiographical writing in and of itself is a refereed endeavor, a constructed record of subjective truths altered by an authorial consciousness that mediates experience and composition. Writing, even in personal journals and diaries, is thus performative, the audience ever present in the author’s act of recording. I have already discussed the ways in which autobiographical texts are

16 Text from the 1991 edition edited by Barbara Timm Gates (a re-released edition of the 1891 and 1898 editions of the published journals which were edited by Shore’s sisters) is noted in citation as “Journal” with page number and date. Text taken from the original manuscripts of volumes VII and XII are cited as “manuscript” with the volume number and date.

The two original manuscript volumes of Shores journals, volumes VII and XII, are held in the University of Delaware Library; none of the other volumes has been located. Access to the text of the manuscript material was provided by digital edition, with text as transcribed by Tara Stern Moore and James Webner under the direction of Professor Barbara Timm Gates. Images of manuscript pages are provided courtesy of the Special Collections Department at the Morris Library, University of Delaware and may be accessed at http://rotunda.upress.virginia.edu/EmilyShore/. Transcripts are provided at the same address. 44

indelibly marked by authorial bias regarding the situations and events depicted.

Realizing this bias is important in the reading and analysis of autothanatography. In the case of social, cultural, and historical examination of autothanatographical texts, this bias means that rather than permitting a reader to gain a full and objective understanding of the experience of a single individual—the premise of such writing— autothanatography offers instead a collective portrait, that is, a culturally influenced and subjective depiction of living and suffering with and dying from terminal illness.

This chapter examines the close associations between Shore’s text(s) and the changing sociomedical understanding of consumption and illness during the Victorian era. This chapter demonstrates the degree to which Shore and her sisters struggle to suppress individual and unique experiences of illness and to conform in writing to their respective contemporary cultural understanding of the consumptive body and its ability to transmit disease.

A set of external sociomedical forces bears upon autothanatographical writing, even beyond considerations of authorial performativity. These forces prompt the author either to take up or to write against the dominant tropes provided by sociomedically accepted accounts of illness that are in turn dictated by disease.17 This is

a concept made manifest in all of the texts under consideration in this dissertation as

the authors engage the processes and trials of writing about their experiences with dying. However, the various available iterations of Emily Shore’s journals/Journal offer

17 See the introduction to this dissertation, “The Editor’s Mark: Autothanatography and Sociomedical Discourse.”

obvious examples of these forces at work, not only in Emily Shore’s initial writing, but

also in her sisters’ later editing of Shore’s texts.18

This chapter focuses on these processes of writing and editing and the ways in

which the illness-centered contents of the journals/Journal’s later entries take shape

from handwritten manuscripts to the publication of accounts edited by Shore’s sisters.

It argues for the distinct effects of sociomedical discourse on the (co-)creation of Shore’s text(s). Though Shore is demonstrably precocious and outspoken throughout the journals regarding other areas of her life, seeking out knowledge and forming (and occasionally publishing) her own research and opinions on subjects as far ranging as politics and poetry to ornithology, her own opinions in matters concerning her health and illness are strangely few, at least in print. She appears to submit to others’ demands regarding her treatment. The journals suggest her acquiescence to social and medical advice and directive in light of her desire to regain her health and to return to some semblance of normal daily life. I argue that the composition of Shore’s autothanatographical account is largely dictated by the sociomedical tropes of her particular culture and time period, as are her sisters’ later edits. For, though she continually strays from the expected social focus of Victorian-girls’ diary keeping that her sisters later attempt to enforce through editing, she never veers from the accepted understanding of how a “consumptive” of her day and social class was to act and present herself in writing and, we can fairly extrapolate from her records, in life.

Louisa and Arabella Shore edit the journals with an eye on upholding what they

18 Of course, we will never know what was written in the parts of the text that were physically excised from the manuscripts. 46

believe should have been Emily Shore’s focus, her gratefulness to her family for

upending their lives in order to prolong hers. Barbara Timm Gates, editor of the most

recent edition of The Journal of Emily Shore, comments that the Shore sisters turned an early nineteenth-century autobiography into a late Victorian biography (Shore,

“Introduction,” Journal). The auto/biographical changes made to the journals reflect the historical periods and literary conventions of the times in which the journals were written and, later, edited and published. They also reflect the concomitant changes in

medical knowledge and practice regarding the etiology and treatment of

consumption/tuberculosis, one of the nineteenth and preceding centuries’ most

historically virulent and feared diseases. Let me provide an addendum, then, to Gates’

notation, and, in doing so, outline two somewhat overlapping periods of sociomedical

relevance to the texts at hand, early Victorian and late Victorian.

What news of illness and its companions Emily Shore wrote in her early-Victorian journals reflects the narrative of consumption as understood at the time of her writing, one based largely on Romantic ideas of the union of illness and creative impulse and aptitude. Consumptives themselves were viewed as delicate in frame, often with narrow chests and a pale yet flushed complexion. Their sensibilities were often delicate, as well (hence their propensity toward the arts). Consumption before and in the 1830s was a disease of variable duration and outcome, one that did not necessarily foretell an early death, it was thought, if the patient’s physician was able to find a suitable and successful treatment in time. Such treatments included removal of the patient to the more hospitable climate of Madeira or somewhere similar, the use of complicated

tinctures and creams and vapors of the physician’s own recipe, or a daily draught of

fresh cow’s or ass’s milk. Most often physicians prescribed combinations of these

treatments.19 Shore’s journals presuppose the accepted narrative of, at least initially,

indiscernible outcome, of fluctuations in illness and health as well as in hope. The

journals adhere to this narrative both because of Shore’s personal experience with the

disease and because of the conventions of the consumption narrative as she and her

contemporaries know it. There is everything conventional in Shore’s maudlin and

sentimentalized20 visions of herself and others afflicted with consumption, literarily and otherwise.

Late-Victorian knowledge of the disease and its social implications was vastly different from its early-Victorian counterpart, however, and the later edited versions of the journals were made to mesh with these changes. Medical knowledge advanced. In

1851, twelve years after Emily Shore’s death and the first year for which statistics are available, the mean annual death rate for respiratory consumption per 100,000 living persons in England and Wales was 277 (269 for males, and 285 for females). Sometime later in 1882, Robert Koch gave his announcement in Berlin that consumption, now called “tuberculosis,” is caused by bacilli and is highly communicable, that is, both epidemic, as Shore originally thought, and contagious, a strict reversal of early-Victorian sociomedical conceptions of the disease. This important pronouncement took nearly

19 These treatments were so individual and highly contested that several physicians held patents on them. For more information on the various treatments of consumption, see Rene Dubos and Jean Dubos, The White Plague: Tuberculosis, Man and Society (1952).

20 Sentimentalist literature places emphasis on the senses and emotions in the perceptions of God, nature, and people. 48

ten years to be widely accepted in Great Britain as valid, for there was great resistance

to what many medical practitioners framed as the devaluing of their current therapeutic

practices and an overturning of the traditional structural comprehension of the disease.

Many medical practitioners had invested their reputations in the treatments they

prescribed. Nevertheless, alongside Koch’s pronouncement, the tuberculosis death rate

dropped steadily. In 1891, the year The Journal of Emily Shore was first published by the two remaining Shore sisters, the mean death rate was 156 (173 for males, and 140 for females). This number demonstrates a significant decrease for which specific medical reasons are difficult to ascertain, though seclusion of patients to stop the spread of consumption almost surely assisted in this decline (qtd. from tables in F. B. Smith, The

Retreat of Tuberculosis, 1850–1950, 7).21 However, one might keep in mind that these

early figures reveal only the numbers of dead whose respiratory symptoms and signs

one could read as definitively tubercular only after an autopsy. The actual numbers of

dead from tuberculosis, pulmonary and otherwise, during the nineteenth century were

likely much higher.

Once Koch’s discovery was accepted, however, the terminology not only altered

the course of treatment for tuberculosis, it altered the social and cultural landscape and perceptions of those with the disease, as well: they were infectious, dangerous, and not necessarily a correlate of artistic merit. To illustrate the impact of such news, one need only turn to an advocate of “dry climate therapy,” Dr. J. Henry Bennet, who argued

21 The numbers of dead from respiratory tuberculosis declined further still, until an upswing in 1941 that lasted until sometime before 1961, when the numbers finally fell below ten deaths annually per 100,000 persons. 49

against the adoption of Koch’s theory as it “‘would lead to much that is distressing to

the patients, to their relatives and to society in general.’” Its widespread acceptance

would mean that a person with tuberculosis would have to “be treated like a medieval

leper ‘separated from his family, to be isolated, shut up . . . refused admission into

hospitals and asylums . . . his clothes should be destroyed, and whether he die or

recover, the home . . . should be burnt’” (qtd. in F. B. Smith, The Retreat 49). There was now a clinical reason that tuberculosis appeared to afflict families rather than individual members, and it was not the thin chests and pale skin handed down through generations. Rather, the close and prolonged association that allowed others to breathe in the expelled tuberculosis bacilli of the infected contributed to the spread of disease. The fear expressed by Dr. Bennet, or at least that part of it not concerned with his own practice and reputation, was that rather than be doted upon, as certainly was

Emily Shore, patients would be shut up away from their families and friends, away from the nineteenth-century “Culture of the Invalid” that dictated an innocent frailty.22

Koch’s discovery precipitated a change in culture, both medical and social. Despite reactions such as Bennet’s, the management of tuberculosis did change, and the conception of the afflicted changed with it. The sanatorium, newly in use in the mid-

1800s, became a de facto location of treatment for those infected with Mycobacterium tuberculosis. In 1898, the year that The Journal of Emily Shore was edited further still and published for the second time, the National Association for the Prevention of

Consumption and Other Forms of Tuberculosis was established and a conference

22 For a succinct outline of “invalid culture” in the nineteenth century, see Maria H. Frawley, Invalidism and Identity in Nineteenth-Century Britain (2004). 50 convened on the matter by the Prince of Wales.

Inasmuch as consumption in the nineteenth century was a physical, and lethal, phenomenon, it was also a creative one. Rene Dubos and Jean Dubos in White Plague:

Tuberculosis, Man and Society describe that, throughout much of the century, dying by consumption was thought to accompany increased creativity and intellectual powers

(44–66). There is little denying that consumption acted as a formative influence in art, music, and literature. Thomas Dormandy notes, for example, that “the list of tuberculous artists, poets, philosophers and musicians still reads like a roll-call of genius” (The White Death xiii). Perhaps the most canonical representative of the consumptive Romantics, John Keats wrote many poems that reflect a preoccupation with dying, as do his final letters. Several of the letters detail his failing health, his coughing and expectorations, his desire for release. In a poignant letter to Charles

Brown dated 30 September 1820, Keats writes, “I wish for death every day and night to deliver me from these pains” (475). Many of the century’s most notable British and

American writers were lost to consumption: Keats, of course; Ann and Emily and, later, though it is a matter of some debate, Charlotte Brontë; Elizabeth Barrett Browning;

Henry David Thoreau; and Charles Kingsley, just a representative handful. Not all of their works reflected or included those with consumption, though illness did creep into narratives and verses with frequency. In Wuthering Heights (1847), Emily Brontë’s character Frances Earnshaw dies shortly after giving birth to a son. Says the narrator,

She was not one that would have disturbed the house much on her own

account. . . . [S]he felt so afraid of dying! I imagined her as little likely to

die as myself. She was rather thin, but young, and fresh-complexioned,

and her eyes sparkled as bright as diamonds. . . . [But] mounting the

stairs made her breathe very quick, that the least sudden noise set her all

in a quiver, and that she coughed troublesomely sometimes. (39–40)

Frances’ doctor, recognizing the telltale signs of pulmonary consumption, gives her no longer than the winter to live. A few days after this diagnosis, she dies in a slight, quiet fit of coughing while cradled in her husband’s arms. Dubos and Dubos observe that

“Colds which settled obstinately on the lungs, fits of coughing, all kinds of fever—slow at their commencement, but incurable and rapidly consuming toward the close—were mysterious ailments which appeared frequently in Victorian novels” (48). Because consumption was believed to affect sensitive and gentle natures and, in many cases, to bestow a particular kind of frail beauty to the sufferer, female and male alike, it was used as an almost always painless and poetic but no less relevant way to end a character’s storyline and to enlist a reader’s sympathies simultaneously. Whether consumption itself was the artists’ muse or was the associated result of apparent literary and artistic talent is a point of debate and consequence that need not be taken up here.23 Suffice it to say, as many others have said before, that art imitates life, but at times with a kinder hand.

So pervasive and culturally entrenched was the disease that it also stamped itself on the works of non-tuberculous artists. Several of Charles Dickens’ texts, for instance,

23 See, for example, Lewis J. Moorman, Tuberculosis and Genius (1940). 52

include a pathetic figure who lingers long enough to illicit sympathy before he dies a

sudden death, often of consumption or consumptive symptoms. Richard Carstone in

Bleak House (1852–1853) succumbs to consumption shortly after learning of the failed legal battle over the Jarndyce estate. The disease also features in The Life and

Adventures of Nicholas Nickelby (1838–1839) as a condition

which so prepares its victim, as it were, for death; which so refines it of

its grosser aspect, and throws around familiar looks, unearthly indications

of the coming change—a dread disease, in which the struggle between

soul and body is so gradual, quiet, and solemn, and the result so sure,

that day by day, and grain by grain, the mortal part wastes and withers

away, so that the spirit grows light . . ; a disease in which death and life

are so strangely blended that death takes the glow and hue of life, and

life the gaunt and grisly form of death; . . a disease which sometimes

moves in giant strides, and sometimes at a tardy sluggish pace, but, slow

or quick, is ever sure and certain. (632)

Smike, Nickleby’s cousin, dies of the disease. The passage above reflects much of both medical and lay understanding of consumption. It also, tellingly, contains very little of the body, for all intents and purposes the marker and physical container of disease and suffering. As it “withers away,” the body, or “mortal part,” loosens its grip on the spirit, now grown light. There is a conflation of bodily appearance and spiritual release. The flushed cheek of consumption, the sign of disease, is now the “glow and hue of life,” a sign of physical death that signifies release into spiritual life; the lack of such a sign is

“the gaunt and grisly form of death,” the weight of the body on the spirit, holding it to

the physical form it inhabits. This phrasing suggests the conceptualization of the

consumptive as an innocent, and the physical attributes of decay and disease are never

made explicit. The description in Nicholas Nickelby is, absolutely, a distorted picture of the ravages of the disease that was, and had been for thousands of years, killing scores of children and adults across the world. Dying of consumption often appeared to ravish the body in waves. One day a consumptive patient might appear sound, her cough little present to absent, her energy, appetite, and spirits in sufficient measure; the next, she might suffer a significant arterial hemorrhage, death all but certain. But, with “proper” care, the next week might see her again recovered from the crisis enough to go riding and to eat with relish. This process might and often did repeat itself until the final crisis.

But those waves in physical reality were seldom so perfectly blended, a picture of the soul or spirit purified through the loss of the body necessary to human—but not to spiritual—life, as depicted above.24

These seemingly unrealistic portrayals of consumption and its victims’

experiences more than resemble the autobiographical accounts of consumptive illness.

They are so similar, in fact, that it appears that the same social and medical conceptions

that inform and thus in part construct these fictive texts also inform and influence

personal autobiographical accounts. The social, medical, and artistic dialogues in regard

to consumption are intermingled to the extent that it is often difficult to extract factual

24 And while the processes are similar, herein lies a fundamental difference in dying of consumption and dying of AIDS: in consumption, the body is thought to ebb away in order to reveal a pure and spiritual soul; in AIDS, the body is understood to ebb away as both revenge and symbol of the decayed soul within. 54

representation from fictive experience. Recall the above passage from Wuthering

Heights and compare it to the following passage from the manuscript of Emily Shore’s journal, in which she talks of a visit to a consumptive neighbor in Madeira where her family has removed itself in order to facilitate Shore’s convalescence:

Poor little Clara is no better, and it seems Dr. Renton believes the

complaint to be on her lungs. I should fear there is no chance of her

recovery. She is but two years old, and a most interesting child, far more

so than her sisters and brother [who are not sick]; her uncommon

gentleness and sweetness of disposition struck us all. She is very

prepossessing too in appearance, has large blue eyes with long lashes, a

delicate fair skin, and flaxen curls, altogether there is singular gentleness

and softness in her look and form, while at the same time, what I should

think a very alarming symptom in so young a child, she has a constant

languor quite different from the vivacity and playfulness of that age.

This, though it subdues her spirits, never alters her sweet temper, she is

always engaging, always ready to be pleased. (manuscript vol. XII, 17

January 1839).

Shore’s descriptions of her unfortunate little neighbor are much the same as Brontë’s portrayal of Mrs. Earnshaw when we first meet her in the text. Both Clara’s and Mrs.

Earnshaw’s fragile quietness of character, pale (“fresh” or “fair”) skin, and innocent physical beauty appear as trademarks of those with consumption. We can hardly distinguish the later fictive account from the details of the autobiographical one.

Consumption informs Shore’s text not only because she herself has the disease but also because those in her community are almost wholly taken with the disease themselves through their own illnesses or those of their loved ones and neighbors. Each account, however, appears to draw from popular sociomedical depictions of consumption, calling into question, in the case of Shore’s text, her reliability as an uninfluenced narrator of her own (and others’) illness. The two passages, fictive and non-fictive, share similarities that mark them unmistakably as describing persons with consumption according to the accepted sociomedical descriptions of consumptives’ appearance.

Both also share a resemblance to another non-fictive text—Shore’s to an exceptional degree—this one a published account in the 1830 edition of the widely read and popular Blackwood’s Magazine in an article titled “Affecting Scenes: Passages from the Diary of a Physician.” The doctor describes “Little Eliza Herbert,” who is dying of consumption: “Little Eliza had inherited, with her mother’s beauty, her constitutional delicacy. Her figure was so slight, that it almost suggested to the beholder the idea of transparency; and there was a softness and languor in her azure eyes beaming through their long silken lashes, which told of something too refined for humanity” (qtd. in

Shryock 40). The similarities of description in this passage to Wuthering Heights’s Mrs.

Earnshaw are apparent, though not consistently as bold as the similarities to Shore’s text. Like Mrs. Earnshaw’s “thin, but young” frame quivering at “the least sudden noise,” Eliza has a “constitutional delicacy” borne of someone with a figure “so slight, that it almost suggested to the beholder the idea of transparency.” In a later passage, the unnamed physician remarks, too, on Eliza’s eyes “lustrous as diamonds” (41).

Brontë clearly takes her cues, down to the diamond-like sparkling eyes, if not just from

her own experiences with consumption, then certainly from the many similar accounts.

But the likeness in this passage to Shore’s passage is slightly too close for

comfort, almost as though Shore’s later depiction had been modeled on the other—or that they both had been modeled on the same idealized portrait of the consumptive.

“Poor little Clara” and “Little Eliza Herbert” could be one and the same girl if not for the difference in location and time. Both have marks of innocence, blue, or “azure,” eyes with “long” or “long silken lashes,” a “softness” in look and action, “delicate fair skin” or, again, an “idea of transparency,” and a constant “languor” that denotes their otherworldliness. Each consumptive girl contains “something,” the unnamed physician notes, “too refined for humanity,” or, as Shore remarks in a similar vein, an “uncommon gentleness and sweetness of disposition.” The girls are nearly angelic, at least rhetorically. The imagination behind the two texts appears the same, as well. The physician’s account is unmistakably idealized, not sterile nor strictly medical, though by virtue of his being a physician there is medical support for his statements. Shore’s account is idealized, too, and includes her own medical assessment borne of the same type of visual observations: “I should fear there is no chance of [Clara’s] recovery.” That the physician’s account is idealized does not take away from Shore’s own idealization; rather, it demonstrates the degree of interplay between social and medical views of consumption in accounts of disease and illness. In The Last Crusade, Mark Caldwell argues that

to contract [consumption], conventional wisdom ran, meant a slow and a

certain, but also a dignified, even a radiant death. . . . for consumption,

though thought of as inevitably fatal, was not widely believed to be

contagious. So instead of acute terror, it aroused a pleasing melancholy,

even a pious exhilaration. In fact, during the earlier decades of the

nineteenth century, of all diseases tuberculosis had a reputation more

calculated to draw admiration than repulsion . . . . [It] was seen as the

most spiritual, the most ennobling, a purger of base qualities and a

distiller of lofty ones. Popular opinion ignored, or at least minimized, the

often hideous physical symptoms. (17, emphasis mine)

The diamonds in the eyes, the luminous skin, the uncommon disposition are all

elements of this spiritualization and reification brought about by disease. Shore’s

autothanatographical journals are personal accounts of her and others’ illnesses, yet

they bear the indelible marks of the collective consumptive representations of her time.

As no text is created in a vacuum, this is not surprising in itself. The significance lies in

the omissions within Shore’s text(s) as we know them (volumes VII and XII being the

manuscript examples). The texts appear on the whole to add little to the perceptions of

consumption as it affects the individual author, complicating the idea, espoused by

Suzanna Egan in Mirror Talk, that autothanatography is both focused on the writer and

is necessarily dialectic in nature. The contradictions of the body are downplayed except

in brief moments that have less to do with Shore’s body than with her community association in Madeira. Instead, Shore’s text rejects information that contradicts her contemporaries’ views of consumption and illness. In the journals, the possibility of

exchange is limited by Shore’s reluctance or inability to see past collective sociomedical

depictions of consumption and, indeed, of consumptives—and thus how and what she

can and should write about—in order to note non-typical and specific details, especially

regarding her body (and this possibility of exchange is limited grossly further in later

editions of the text). In order to make obvious the import of this claim to the study of

autothanatographical writing, this chapter now turns more fully to its main text(s), the

journals/Journal of Emily Shore.

In her introduction to the companion website to the recently re-released Journal of Emily Shore, Barbara Timm Gates notes that “With its frequent measurings of the disease and reflections about it, to some extent Shore’s journal was a part of this phenomenon” of romantic and sentimentalized depictions of consumption (“Self

Writing as Legacy”). While Shore’s sister-editors removed or altered a large but as yet unknown number of journal passages that discuss Shore’s failing health, the subject so consumed the final years of Shore’s life that it was impossible to omit them all lest there be little to nothing to publish. The two manuscript volumes so far discovered are almost entirely taken up with consumption-related topics: Emily Shore’s own consumption, others’ consumption, weather and its effects on illness and healthful activities such as riding and walking, diet and its effects, visits paid to Shore out of respect for the ill and by her to others with consumption, travels necessary for consumption, and favors done for the consumptive person. Clearly, suffering from consumption was all-encompassing and unfortunate and known in its more obvious cases to portend death after an

indeterminate period of time. It was less a taboo topic of discussion and writing,

however, than it was a pervasive cloud that hung over households of all social classes.

One reason for the romantic conception of the disease, and thus its acceptability

in polite society, was the contemporary notion that consumption, like influenza, was

epidemic but not contagious.25 There is absolutely no mention of contagion in the journals/Journal. And, at least from Shore’s written descriptions, there appears to be no fear among the natives of Madeira that they, too, will contract the disease merely as a result of living and working within this island-encompassing enterprise of medical tourism. The manuscripts instead reflect the notion of familial propensity of contraction

(though no other member of Shore’s family seems to have manifested the disease26). In fact, so anathema is contagion to the medical and lay conceptions of the time regarding consumption that Shore gives no writing space to the possibility, for example, that an ill acquaintance named Miss Newbolt may have contracted consumption in Madeira by virtue of living in a colony of the afflicted. She attributes what were known as the symptoms of consumption of the stomach to “the dreadful scourge of Madeira, dysentery. She is now, poor thing, shrivelled up like a piece of white parchment. I have seldom seen a girl so manifestly a victim of wasting illness” (manuscript vol. XII, 6 Feb

1839). It is impossible to diagnose the cause of Miss Newbolt’s difficulties by way of the

25 Centuries prior, consumption was suspected of being contagious, though the means of transmission was unknown. Of the influenza, shore writes that “It is not infectious, but an epidemic” (manuscript vol. VII, 27 January 1837).

26 Given the symptoms described by Emily Shore in her journals, it is possible that her mother may have had consumption that infected the liver rather than the lungs, as it did occasionally, but this is purely speculative. See in particular the manuscript entries for 25 February 1839 through 3 March 1839.

60 little information given in the journal, of course, but the point remains. Shore frequently interposes her views regarding the health and conditions of others, and she does so here in the form of a singular diagnosis and leaves room for no other option: dysentery. Miss Newbolt is not in Madeira to engage treatment for consumption, so its appearance after the fact is all but impossible for Shore. Her written records suggest this. One might mark for particular notice in this brief passage, too, that Miss Newbolt is “shrivelled up like a piece of white parchment,” not “pale” or “fresh” or “fair.” It seems, much to Miss Newbolt’s disadvantage, that there is no idealized view of dysentery.27

In contrast, Shore sentimentalizes consumption and, by proxy, her own artistic creativity and impending death. Take as an example her lamentation in Funchal,

Madeira, a popular medical tourist locale into whose climate she, like so many others, has retreated to care for her lungs. She contemplates the foreign cemetery in which she thinks herself likely to be buried,

I gazed round this silent cemetery, where so many early blossoms, nipped

by a colder climate, were mouldering away; so many, who had come too

late to recover, and either perished here far away from all their kindred,

or faded under the eyes of anxious friends, who had vainly hoped to see

them revive again. I felt, too, as I looked at the crowded tombs, that my

own might, not long hence, be amongst them. … It is the first time any

such idea has crossed my mind in any burial-ground. (Journal 300–301, 24

27 I acknowledge that dysentery is a symptom of another condition, not a disease in itself. However, this was not the general understanding among lay people. 61

December 1838)

Such sentiments are morbid, perhaps, and dramatic, but also in keeping with the social

and medical attitudes about consumption prevalent in Shore’s time and society. This

passage again reinforces the idea that consumption strikes down the young and

innocent and slight of frame, overcome, perhaps, by taxation levied on the mind and

body from too much creative thought. Also in keeping with her era’s sociomedical

ideations of travel-based and environmental treatment of disease, Shore believes that

had these “early blossoms” retreated to Madeira earlier, they might be alive still.

Difficulties with diagnosis exacerbate the supposed mistiming of these retreats,

as Shore well knows. In an earlier manuscript entry dated 14 July 1838, a Saturday, she asks her journal, “What is indicated by all these symptoms?” thus commenting on the supposed but as yet unknown naming of her own illness:

this constant shortness of breath, this most harassing hard cough, this

perpetual expectoration, now tinged with blood, this quick pulse, this

painfully craving appetite, . . these restless, feverish nights, continual

palpitations of the heart, and deep, circumscribed flushes? Is it

consumption really come at last, after so many threatenings?”

(manuscript vol. XII, 14 July 1838)

Without the approval of others she cannot ascribe a definitive name—and thus a plan of treatment—to her disease. Though she rattles off each of the tell-tale symptoms of consumption and writes what she supposes directly (“Is it consumption really come at last”), she is unable to write much more than her fears, though she refuses to call them

that (out of deference to the will of God). She is not taken by surprise by the possibility

that her condition is lethal, however, for she has “had it steadily, almost daily, in view for two years, and have always known that my lungs were delicate. I feel no uneasiness on the subject, even if my ideas (I cannot call them fears) prove right” (Journal 264, 14

July 1838). Not long after, her suspicions are confirmed by a physician, and she is sent

along with her mother, brother, and one of her sisters to Madeira. This is where, just

over five months later, she writes about wandering through the graveyard of Funchal,

where she sees the “early blossoms, nipped by a colder climate.” These blossoms, to

extend Shore’s metaphor, might have seen their full bloom had they but come in from

the cold and retired earlier to Madeira’s warmer bosom. This is a warning which Shore

has again taken to heart seriously enough to apply in her journal to her friends’

conditions:

The eldest Miss Page, for whose health [the family] came out, is a

delicate looking girl, fair and blue-eyed; she was subject to bad coughs,

and her brother, taking the alarm, declared that a winter in Madeira

would set her up for life; in my opinion judging very prudently. It too

often happens that this salutary measure is deferred till it is much too

late, whereas at an earlier stage it might have answered. (manuscript vol.

XII, 8 January 1839)

All told, Shore’s manuscripts adhere to the contemporary sociomedical ideations of

consumption and persistently uphold them throughout the known entries of her

journals.

The attention that Emily Shore’s journals give to her illness seems slight in comparison to the autothanatographical accounts of today. Whereas Shore’s journals incorporate her experiences with disease and illness among other issues of unrelated importance, twentieth-century journals are often taken over by such documentation completely. Shore’s inclusion of illness is somewhat typical of contemporary and earlier journals, though she does spend more time in discussions of illness as the journals progress. She draws on earlier literary conventions of travel writing in order to discuss much of her medical treatment as it involves going to Madeira. On a basic level, it makes sense that the travel diary or journal and elements of illness stories go hand in hand, as removing one’s self to a particular location had in Shore’s time already been an oft prescribed remedy for medical ailments for thousands of years. Fewer than a hundred years before Shore began writing of her illness and travels to Madeira, in 1754,

Henry Fielding wrote The Journal of a Voyage to Lisbon as a travel narrative. Suffering from dropsy, Fielding engages in medical tourism. He includes a half-dozen or more references to his being tapped with a “trochar” (trocar) and having water drawn from his body while on the trip. He includes brief passages about how many quarts of fluid are drawn from him in relation to the previous draw, as well as the process by which the fluid is taken and the ease or unease of doing so. For all its focus on other issues, the text is quite particular in regard to bodily matters.

There is no mistake regarding the focus of the story, however; while it includes these detailed descriptions of treatment, it is by and large a narrative concerned with the matters and details of sea travel rather than of illness. The two are by no measure

given equal attention. Richard Gooding remarks that “Fielding wrote the Journal with the explicit aim of encouraging reform of maritime laws that related to the transport of passengers” (“‘A Complication of Disorders’” 387). The voyage itself is one undertaken in large part for the medical purpose of achieving the destination meant to treat, through climate change, Fielding’s dropsy (much as Shore’s changes of climate are meant to effect a cure for her consumption). He interjects his medical treatment as it comes up in the chronology of the trip and the ways in which it inconveniences his voyage agenda rather than making it a primary focus. Notes Gooding, “we witness

Fielding’s restless movements between the public commitments of a civil servant struggling to reclaim some small measure of the influence he once enjoyed, the private anxieties of a husband and head of an economically imperiled family, and the still more private self-absorption of a man whose body is betraying him” (387). As complicated as the tale is, Fielding engages no great discussion of the medical process or of the danger of death from sickness. The omission of such material is unlike Shore’s text, which spends a significant portion of the later journals on the several aspects of Shore’s health and illness and their impact on her ability to write as she would like (though she goes into less personal detail than does twentieth-century autothanatographical writing).

Emily Shore’s journals are unique in that in them there is a nuanced written record of early nineteenth-century experience with an author’s terminal illness. In the edited versions of the journals, we can see how some fifty years later those experiences were distilled and made palatable by her sisters for a late-Victorian audience with very different ideas not only about the proper content and tone of ladies’ journals but also

65 about medicine and social responsibility. The late-Victorian fears of Dr. Bennet were not far off the mark: sanatoriums proliferated in the late-nineteenth century; the practice of keeping one’s tubercular relatives in the home abated. Even before antibiotics, well-meaning relatives sent those afflicted with newly scientific-sounding tuberculosis to hospitals for rest and relaxation, fresh air and proper nutrition (and likely a good dose of melancholia). Many manuscript passages in which Shore contemplates her small and intermittent recoveries from illness have been expunged from the edited text by her sisters in favor of a more linear narrative, one that suggests Shore’s illness trajectory was one of steady if not necessarily expeditious decline rather than one rife with the medical ups and downs she suffered according to her manuscript and that likewise plagued many families with consumption in their midst.

Returning to my addendum to Gates’ assertion of auto/biographical change, then, I suggest that while there is everything conventional in Shore’s description of her illness and its course, there is the same degree of adherence to strict conventions in the severe redaction and editing of Shore’s journal by her then late-Victorian sisters. By the late 1800s, early-Victorian visions of consumption had made way for a scientific framing of tuberculosis, and no doubt the Shore sisters felt it necessary to alter the contents of the journals to fit this new etiology and sociomedical conception. It makes sense, in this respect, that Shore’s more melancholic digressions, however literary, would have been cut in order to impose this more linear illness narrative, in keeping with late-Victorian expectations of girls’ diaries—socially oriented and not reflective of a writer too sure of herself. Arthur Ponsonby, author of More English Diaries, wryly notes that even after

66 being heavily redacted, Shore’s journals present “an almost ludicrous contrast to a social diary kept by young ladies of her age” (204).

The Shore sisters further sought to keep the journal contents within the respectable confines of current medical knowledge as much as possible. Portrayals of the erratic nature of tuberculosis would have been in conflict with current sociomedical ideas of the disease. Moreover, they could have been read by others with distaste as coming from a complaining agent of disease rather than as from a family-loving but stricken and precocious young genius in danger of being cut down before her time, as her sisters portrayed her. Though the path the disease would take may not have been altogether certain, the outcome of tuberculosis was clear once Koch’s discovery was made known to the public: death and, more than that, likely transmission of disease to others. Put in this light, the sisters’ editing seems not only a matter of enforcing storied conventions on the journals, but also one of enforcing sociomedical conventions in order to reinforce a view of their sister as heroine rather than as a maudlin potential transmitter of tuberculosis.

Speaking of another dread disease, syphilis, Sander Gilman remarks that a natural death at one moment in time is yet a pathological death at another (“Two

Deaths in 1900” 41). Surely the same sentiment applies to tuberculosis. The early

Victorians viewed consumption as a natural, even an expected, course of illness and eventual death in 1839. Treatments were nature based and organic, changing with each individual according to his or her seeming need and to the attending doctor’s philosophy. Patients were encouraged to travel, to walk, even to sail for years at a time.

Death from tuberculosis, on the other hand, was pathological; treatments were

preferably carried out in sanatoriums (some, admittedly, still practiced nature-based

remedies, but these were administered within the strict confines of the hospital setting),

and patients’ movements and access to visitors were heavily restricted. While Emily

Shore seemed an unlikely candidate for blame in the 1830s, by the 1890s and the

discovery of tuberculosis’ origins in disease, her sisters sought out, and found,

originations for Shore’s illness, while also lightly censuring her overreaching educational

habits and her embrace of unmediated nature. They note in their “Introduction” to the

Journal that “it was, indeed, in a great degree to her wanderings at dawn of day in the

dewy woods, and her late watchings at open windows . . . that she owed the attack of

lung-disease which terminated so fatally and so soon” (Journal vi). Much later in the

Journal they remark on one of Shore’s outings which gave her great pleasure but which, too, “set the seal on the malady she was recovering from. She caught cold, and from that time may be said never to have really rallied, though no one was aware of the fatal damage that had been done” (Journal 196, 18 May 1837). These statements are no doubt reinforced by what Clark Lawlor calls a later Victorian “medical theory which postulated the dangerous consequences of physiological and psychological excesses”

(Consumption 119). These two passages further demonstrate the Shore sisters’ need to gain control of their older sister’s story, to alter it according to their own purposes and to their own audience’s perceived tastes.

Though Shore’s sister-editors make numerous annotations and editing marks and black out or physically remove whole entries of the journals, they rarely comment

68 on their decisions. Their notion of rightful control over the Journal contents is such that even the original manuscripts bear the irreversible physical marks of their editing. But the process of editing itself is not altogether unusual. Speaking of the control that editors often have over published texts, Suzanne Bunkers suggests, “Although the diarist writes the diary, the editor or editors determine which diary entries (all, some, a few) will be included in the edited text . . . . Not surprisingly, the exigencies of an editor’s personal and professional life have a bearing on her or his preparation of the text of a manuscript diary into a published edition” (“Whose Diary,” para. 11). It was not uncommon for Victorian editors to significantly change the content of authors’ works.

In Innovators and Preachers: The Role of the Editor in Victorian England, Joel H. Wiener notes that the “classic” Victorian editor was one who practiced his craft with a strong hand and imbued his writers’ content with his own personality and tastes (xi–xix). In the case of Emily Shore’s manuscripts and sisters, these exigencies include issues of decorum as well as the desire for textual readability and identifiable narrative arc within the Journal. When the sister-editors remove months’ worth of material from Volume

XII, however, they include a lengthy note intended, it seems, to justify their decision to alter their sister’s writing so drastically, and thus effectively to claim the text and alter the course of the Journal on the whole:

From February, 1838, to the present date, July 20, the journal is very

largely occupied with the return to England, after six years’ absence, of

the very oldest and dearest friend that the writer had. But this return was

under such melancholy circumstances, and the expressions of love, pain,

and pity, during the expectation and at the reunion, are almost

monotonous, and so mixed up with morbid depression from the poor

journalist’s own sinking health, that it has been thought better to omit

the whole of this subject (which takes up pages on pages), save a passing

word or two. (Journal, n.d., 266–267)

The justification given by the sisters suggests that late-Victorian readers’ comfort with and interest in the subject material presented overrides the need to offer a literary portrait of Shore’s experiences as she wrote about them. Not only do the sisters remove “pages on pages” of entries, but with them they remove the “expressions of love, pain, and pity” intermingled with the “morbid depression from the poor journalist’s own sinking health.” In short, they remove what may have proved to be

Shore’s most emotionally charged and lengthy ruminations on health and illness and the ways in which they affect her emotional and spiritual lives, her relationship with her body, and her interpersonal relationships.28 All that remains of the manuscript passages bears hardly a mention of disease or illness but revolve instead around nature or familial scenes of mutual adoration, reinforcing late-Victorian portrayals of the happy and

devoted family.29 Occasionally, those entries that remain hint at the potentially

scandalous nature of the fuller entries (by the standards of 1891 and 1898), though their

much abbreviated forms contain nothing of especial note in the context of the journals:

28 Barbara Timm Gates also speculates that Emily Shore may have had a romantic affection for her friend, an affection about which the sisters thought it improper to write so openly. This supposition is buffered by numerous entries in the manuscript which discuss in great detail the happiness that Shore finds in a later female companion in Madeira.

29 For an in-depth portrait of Victorian conceptions of family life, see Claudia Nelson, Family Ties in Victorian England (2007). 70

June 1, Friday

… I stooped and drank the salt water, for I love everything connected

with the sea. Its sight, sound, smell, even taste, all have charms for me—

of association, at all events. I longed to run and jump about among the

rocks, and on the shingles below.… (manuscript vol. XII, 1 June 1838,

ellipses in original)

. . . .

June 9, Saturday

We sat down on seats overlooking the beautiful bay, Ellen looking

sweetly pretty, with her little slight figure, long ringlets of rich brown, and

beautifully pure white complexion, just tinged with the most delicate

pink. She is a sweet little creature.… (manuscript vol. XII, 9 June 1838,

ellipses in original)

The silence of the ellipses is what speaks most loudly in these entries, the before and after, the idea that Shore’s voice has been muted to a whisper in order to force the text into an ideal storied construct worthy of Victorian readership.

Nowhere is this whim so clear as in the final pages of Shore’s journals. The edited volume ends on 27 May 1839, with the following entry and subsequent editorial comments:

I feel weaker every morning, and I suppose am beginning to sink; still I

can at times take up my pen. I have had my long back hair cut off. Dear

papa wears a chain made from it. Mamma will have one too.

[Ed.] Here end the extracts; but the writer added a page more to

her journal, the last words being written in a tremulous, yet quite legible

hand, on June 24th, a fortnight before her release. (Journal, n.d., 351)

The sisters end Shore’s journal with a final reaffirmation of Shore’s place within the family unit and of their mutually loving relationship. What they remove, however, tells more than what they let remain. Shore lingered for another month, and the manuscript reveals a list of bequests and three more entries, as well as the remainder of the entry noted above, which the sisters retained only partially. All but the last entry reveal

Shore’s desire to live longer, to have “a little more time” (manuscript vol. XII, 30 May

1839), in short, to remain bound to that “mortal part” that Dickens in Nicholas Nickleby suggests “wastes and withers away, so that the spirit grows light.”30 The sisters in their editing remove the sense of uncertain struggle between body and spirit that Shore reveals, finally and briefly, at the end of her life. The final entry in Shore’s manuscript details for the first and only time her exact food intake for the day, as well as her desire for release. With the omission of these final entries, Shore’s sisters effect the disconnect of Shore’s bodily concerns (her eating, her desire for physical release) with her illness as they wish her readers to do, instead enforcing her socially and morally correct bond with her parents. Not wishing to stifle once again Shore’s own voice, I offer the entry in its entirety, as follows:

30 It is here that the dialecticism Egan supposes true of all autothanatographies shows itself blatantly, if only in passing.

What have I got to say? That I live on fruits and goat’s milk. This is what I

have had to day: at 6 milk; at about 11 1/2 breakfast on milk & 2 figs: at 4

1/2 a little boiled apricot and rice, at 5 1/2 a strawberry ice. Milk again at

7—

I should like to have one hour of ease but for this I must not hope on this

side the grave.

When will my release come! but this is wrong. I must wait God’s

pleasure. (manuscript vol. XII, 26 June 1839)

Accounts of last words are dependent on the questions they are supposed to answer, observes Gilman (44–45). Shore’s original text addresses implicit questions of identity in the face of a terminally ill body. “What have I got to say?” she asks her journal, her self. What else does the struggling body have to say to itself? It says what it knows: This is what I have eaten. This is what I want—until cultural demands impose themselves once again, and Shore’s own editorial voice takes over: “but this is wrong. I must wait God’s pleasure” (manuscript vol. XII, 26 June 1839). It is true that throughout

Shore’s text she minimizes her bodily concerns. Her sisters, however, remove them almost entirely, for they recognize that this outer bodily state is representative of the inner state of either innocence or guilt. If there is no wasted body to contend with in the text, then the job of rhetorical transformation into literary heroine is made all the simpler.

I wish to make one final note regarding the journals/Journal and their

73 publication. Shore’s journals seem initially to absorb her illness and physical complaints into their general text, and only later are the journals quite taken up with the tasks of recording her illness experiences in some frequent detail. Her journals were written for a very private audience, one that she notes included herself, friends, and her family.

However, with startling prescience she comments, “I cannot entirely divest myself of an uncomfortable notion that the whole may some future day, when I am in my grave, be read by some individual, and this notion has, even without my being often aware of it, cramped me, I am sure” (manuscript vol. XII, 6 July 1838). She plans then to begin another, wholly private journal (her “Brief Diaries,” unpublished by her sisters and as yet undiscovered) so that she might continue to write in this one’s pages in the culturally aware manner in which she has so far done, with the view that her journals may someday be published. She has, she remarks, “by no means confessed myself in my journal; I have not opened my whole heart; I do not write my feelings and thoughts for the inspection of another” (manuscript vol. XII, 6 July 1838). And yet her “feelings and thoughts” are what are contained therein, perhaps under the guise of views and arguments. By so drastically changing the contents of the journals, her sister-editors may have believed themselves to be adhering to their sister’s request that the journals be presented with a culturally sensitive hand, one that takes great pains to adhere to current views of the topics on which she writes.

Shore’s text(s) demonstrate her writerly struggles to document her physical and emotional decline while still engaging the recognizable tropes of consumption, namely the innocent and artistic sufferer who engages various accepted treatments and cures.

Her observations are heavily influenced not only by the fact of her impending death, but

also by the contemporary sociomedical understanding of the consumptive sick role. The

striking resemblance of Shore’s texts to other texts of the nineteenth century is

testament to this pervasive sociomedical influence. The attention to disease and illness

both in Shore’s original (though altered) manuscripts and the published Journal edited by her sisters is marked and, by some degrees, excessive for the period and cultural atmosphere in which her texts were written and published. This attention, however, is slight in comparison to that given in texts written during the autothanatographical boom of the late twentieth century. These later texts are taken up in discussions of much greater bodily questioning and often grotesque detail, which would have been thought altogether indecorous in previous decades let alone in the previous century.

Sociomedically, tuberculosis may seem incomparable to HIV/AIDS given their vast differences. The gap between the two initially appears wide because the primary historical associations made with the latter are that of intravenous drug abuse, gay male sex, and, sometime later, prostitution and sex-tourism-related xenophobia (against

Haitians), in short, so-called “deviant” bodily behaviors. In contrast, the primary

associations made with the former appear to encompass the reverse, innocent or even

angelic outward appearance and behavior. It is not necessary for the examination of

autothanatography as a recorded genre to draw parallels between the two, strictly

speaking, as the discursive examinations in these chapters may be applied to

autothanatographical writing of other diseases and accompanying illnesses. Drawing

the most important parallels now, however, may assist in bridging the seeming gap in

time of writing between Shore’s text(s) and of the texts in the chapters following, as

well as in their examination.

Several important sociomedical parallels may be drawn between tuberculosis

and HIV/AIDS, each contributing to the sociomedical understanding of disease and

illness and thus to the self-documentation of experience. First, both diseases have etiologies which were highly debated by medics and laypersons alike. For both tuberculosis and HIV/AIDS, this led to initial inability of medics to determine the disease and thus to name the condition it produced, a significant issue in many autothanatographical texts. Second, both are infectious diseases, but making contact with either disease is no guarantee of contraction (i.e., 85-90% of those with tuberculosis bacilli manifest no symptoms, the tubercles sealing them off from further activity (Dormundy, The White Death); coming into contact with HIV-infected bodily

fluid is no guarantee of contraction, as the virus may either pass through the system or

linger and reproduce, for unknown reasons). This variability in both contraction and

symptom manifestation is the reason that, though both diseases are highly infectious,

friends and family members living with or coming into frequent contact with (in various

ways) the infected do not always manifest symptoms of the disease. Relatedly, both

tuberculosis (Caldwell, The Last Crusade) and HIV/AIDS have different strains, some

much more virulent than others, and can affect numerous systems in the body,

seemingly without predictability. As a result, infection with tuberculosis and HIV may or

may not, over an indeterminate duration, cause extreme difficulty and illness depending

on the virulence of the strain which one has contracted and to other mitigating factors

such as environment and personal habits. The significance of this variation is brought to

light in Emily Shore’s manuscript and subsequent edits in the frequency of Shore’s

treatments, sicknesses, and recoveries, many details of which her sisters edited out of

the published Journal. The same is reflected in many twentieth-century

autothanatographies. Finally, both diseases were ascribed to particular groups of

people or to people with particular appearances or habits, and in both cases sufferers

were seen at once to encompass artistic merit and some sort of pathological deviance to

a greater or lesser degree (given the supposed methods of contraction, familial and

habitual).

Shore’s text(s) demonstrate several connections to the later texts to which this

dissertation will now turn as we move from the mistakenly coined “White Plague” of

tuberculosis to the likewise erroneously named “Gay Plague,” or HIV/AIDS. In regard to

writing autothanatography, the sense of authorial performativity found in Shore’s

journals extends to these more recent texts in the same or, politically, greater degrees,

given the even more highly contested views of the disease in question. Added to this authorial performativity is a charged set of external sociomedical forces, which far surpass those in Shore’s day, acting in negotiation with the authorial impulse of the autothanatographer.

WHEN I WAS TOLD THAT I’D CONTRACTED THIS VIRUS IT DIDN’T TAKE ME LONG TO REALIZE THAT I’D CONTRACTED A DISEASED SOCIETY AS WELL. David Wojnarowicz, Close to the Knives, 114

CHAPTER THREE

A Difficult Entanglement: Negotiating the Discourses of Disease in

Eric Michaels’ Unbecoming

Eric Michaels sits alone. It is June 26, 1988, and the camera’s flash invents a shadow on the blank interior wall behind him. His dark curly hair and flourishing beard look twice as wild, twice as big, as their edges blend into the background, making it difficult to see where Michaels ends and his shadow begins. Only his skin is illuminated.

The light catches in the slight wrinkles on his cheeks, in the fleshy bit of skin between his eyes; it lies across his slumping shoulders. He sticks out his tongue, flashing KS at the camera. He is covered with lesions. In this monochromatic Brisbane photograph, the bright burgundy welts are reduced to yet another shade of gray, muted contours that mimic the beginnings of Michaels’ own disappearance into the shadow behind him. Like much of Unbecoming, the portrait that appears in its first pages is demonstrative of a difficult entanglement, a grappling for control through performance. Michaels pulls a face for the camera—and for the friend who is taking the photo—and in so doing he provides himself as defiant spectacle, the half-naked man with Kaposi’s sarcoma, the half-naked man with AIDS. 31 Staring into the camera, he dares the viewer to look, to

31 Kaposi’s sarcoma lesions are known almost universally (i.e., among those in medical and related scientific fields as well as among laypersons) as a metonym for AIDS. There are numerous accounts of this 78

notice, first, the marks of disease, then his expression. The moment appears instructive:

these are not the smart little moustache and close-cropped hair Michaels flaunted in the

early eighties. The chest hair remains, but Eric Michaels’ Freddie Mercury lookalike days

are behind him.

An American anthropologist living abroad, he was diagnosed with AIDS while

teaching and studying the impact of television on remote Warlpiri Aboriginal

communities in Western Australia. Michaels is best known for two monographs on the

subject, The Aboriginal Invention of Television in Central Australia and For a Cultural

Future: Francis Jupurrurla Makes TV at Yuendumu, as well as for a posthumously

published collection of essays titled Bad Aboriginal Art. A lesser known work,

Unbecoming was written as a journal during Michaels’ final year and was edited and

then published, at his request, after his death. In it, he comments on his feeling

displaced within a notably anti-HIV-biased community of Australians to whom he becomes not merely a foreigner, but also an infected—and infectious—gay American.

He struggles with his identity in a non-native land that values his writing and the critical attention it gives to Aborigines, but otherwise shuns him.32 The first entry is dated

September 9, 1987. The last, on August 10, 1988, just two weeks before he died,

exposes the fearful heart of the text:

[I]f I leave Australia, not only do I die, but I do so in some horrible,

widespread knowledge of Kaposi’s sarcoma as a signifier of AIDS, but see in particular Dennis Altman, AIDS in the Mind of America (1987); Diane Goldstein, Once Upon a Virus: AIDS Legends and Vernacular Risk Perception (2004); and Alex Preda, AIDS, Rhetoric, and Medical Knowledge (2005).

32 Michaels is a noted anthropologist who made a name for himself living among and writing about the Australian Warlpiri Aborigines. 79

confused, totally alienated public welfare environment, with no friends,

no confirmation of my life and work—just hysteria, rather than any

possible satisfaction, fulfillment which anyone, any human, I think, is

entitled to at deaths’ door. . . . I still believe something can stop this

madness. . . . But even if it is resolved, the problem . . . consumes what

energy I have for writing and planning, hijacks all my agendas and

otherwise completely overtakes these last days. That people willing to

[attempt to expel me forcibly from Australia while I am so ill] exist

staggers me. That they can represent the official arms of the state

depresses me more than I can say, or think. (126)

As the final entry suggests, Unbecoming reveals Michaels’ loss of subjectivity as a result of the proliferating and, he would assert, de-humanizing discourses of disease. He

experiences alienation at the hands of Queenslanders and the Australian government,

which recognizes him as an intellectual subject and asset to the country until he

becomes a physical and social liability, an infected and infectious body or thing.

Unbecoming voices the events in which this objectification is adopted by the government-controlled medical establishment and by the Brisbane community.

The division of subject and object is one that Michaels delineates repeatedly in

Unbecoming. Most often this delineation appears in his description of and opposition to an ever-pervasive object-oriented discourse of “tidiness,” which he defines as

a process which, while avowedly in the service of cleanliness and health,

in fact is only interested in obscuring all traces of history, of process, of

past users, of the conditions of manufacture (the high high gloss).

Tidiness inhabits and defines a ‘moment,’ but one outside time,

ahistorical, perhaps the ancestral Dreamtime home of all ‘life styles.’ It is

a perfect bourgeois metaphor. The tidy moment does not recognize

process, and so resists deterioration, disease, aging, putrefaction. On this

basis, it justifies its association with health and cleanliness and is

considered an appropriate discourse to inflict on the diseased, the aging,

the putrefying. (Unbecoming 17)

Michaels understands tidiness as disingenuous and inauthentic. It erases individual and

cultural marks of creation and use in favor of homogenization, and it further entails a

system of forced categorization according to a single criterion that erases the possibility

of variation (hence the censure of the term “life styles”). Tidiness is located in a discrete

instant relative to nothing but itself, and it achieves little in the way of authentic

comparisons: a thing is either tidy or not tidy. Michaels’ explication of tidiness in

Unbecoming demonstrates a significant breakdown in communication and patient understanding, one that not only impacts but takes over Michaels’ record of illness and problematizes his sense of experiential subjectivity. Michaels extends tidiness to the treatment of disease and the experience of illness in order to interrogate sociomedical and political instances of objectification and the attendant feeling of incapacity this objectification instills in those objectified. In this chapter, I argue that Michaels’ employment of the concept of tidiness to understand and construct his illness story demonstrates the breakdown in communication between Michaels and medical

personnel. The employment of tidiness as a narrative trope reveals Michaels’ textual

negotiation of this breakdown, one which stems from the objectifying sociomedical

discourses that surround him as he is dying.

The “discourse of tidiness” highlights the discrepancies realized between object-

oriented care that attends to a “disease” (a term denoting a physiological process such

as cancer) and subject-oriented care that ministers to the individual’s “illness” (a term

connoting the subjective response of the patient to related distress). 33 As exhibited in

Unbecoming, disease is a rational discourse of tidiness unbounded by personal emotions that, according to some medical professionals, hinder medical treatment. The patient’s interpretation of this objectifying discourse of disease is at odds with his desire for subjectivity and a degree of autonomy in illness experience. The larger point, perhaps, is that the latter-twentieth-century biomedical model of the body has resulted in a sociomedical concern for disease that outstrips the concern for the patient’s experience.

This model focuses on physical processes such as pathology and biochemistry, and it neglects the fact that diagnosis and treatment are results of doctor-patient negotiation and acceptance. 34 The act of tidying is first and foremost the act of removing traces of

the human subject (e.g., the brushstroke, the footprint, the individual history) in favor of

an ahistorical object-ness and resultant ability toward broad categorization. Michaels

33 I draw Arthur Frank’s distinction between “disease” as physiological process and “illness” as patient stories and experience. This distinction pervades Frank’s writing; however, see in particular At the Will of the Body: Reflections on Illness (2002) (12–15).

34 The biomedical model focuses on physical processes such as pathology, biochemistry, and physiology of disease and does not account for the role of social factors or individual subjectivity. The model neglects the fact that diagnosis and the resulting treatment of the patient is a result of doctor-patient negotiation and acceptance. See Ellen Annandale, The Sociology of Health and Medicine: A Critical Introduction (2002). 82

extends this “bourgeois metaphor” to the treatment of disease and the experience of illness, both within the institutional setting and without, in order to interrogate sociomedical and political instances of objectification and the concomitant feeling of powerlessness objectification instills in those objectified.

Because biomedicalization attends to pathological physiology rather than holistic treatment of the ill subject, it is often reflected negatively in contemporary autothanatography in which, in the very act of writing, the authors assert their position as subjects. Tidiness is concerned with elements, discrete surfaces and naming among them, that shift the focus of care from the storied illness experience of the individual patient to categorical (and impersonal) disease. In Unbecoming, tidiness operates under the guise of cleanliness in the service of health and, in the institutional setting, of patient care. However, “Tidiness, we will discover by analogy, does not assure the cleanliness it promises. Instead,” Michaels writes, “it merely obscures dirt; indeed, all natural (and finally historical) processes” (15). Tidiness thus reinforces object-centered care that tends toward representation of an individual human being as a physical thing

(in short, a disease) deprived of personal qualities, history, and individuality. This representation and resultant treatment is a form of reification of the individual, which in this context posits the individual-as-disease. Such reification separates one from individual characteristics and history at the same time that it reflects a collective cultural understanding (or bias) regarding disease and the diseased, an understanding that favors tidiness.

I return with this in mind to the photograph mentioned at the beginning of this

83 chapter and argue that it contains elements of Michaels as both named and categorized object (in other words, a representation of tidiness at work) and as subject participant.

It therefore demonstrates the problematic nature of Michaels’ easy demarcation of tidiness as automatic and negative objectification without the possibility of subjective overlap. For instance, the photograph offers Michaels to the viewer as an object of disease, his lesions prominently on display as irrefutable markers of AIDS and thus of his definite categorization as an HIV carrier. However, the photo also positions Michaels as a clowning performer taking on the role of a person with AIDS (PWA). He is the photograph’s voluntary subject with his tongue out, a lesion showing in its plump center; the photographer, Penny, is a close friend. The setting is not a clinical one, the photographer neither a stranger nor a medical professional. This is a staged visual text with Michaels as a participant presenting himself as a medicalized object.

Given that he wrote Unbecoming with the same eye toward the self- presentation of what he perceived as medicalized objectification, it would seem that for

Michaels the presentation does reclaim a degree of subjectivity. Tidiness is a means of demonstration. It serves its purpose aesthetically, functionally, and practically.

Contrary to Michaels’ own assertions, his text suggests that tidiness is also a means through which one re-establishes useful boundaries. It is when those boundaries are suspect, defined by those in power in an inherently unequal power balance, that tidiness works at cross purposes in regard to cleanliness and health. This suspect quality is especially pronounced when the balance pertains to a triply disenfranchised individual, an HIV-positive gay foreigner. While the concept of tidiness allows Michaels

to make judgments regarding his treatment, it also acts as a limiting lens through which

he views the interactions documented in the text. Beginning with his treatment in the

Royal Brisbane Hospital, Michaels searches out, collects, and records evidence of his objectification and perceived maltreatment. The tidiness that is essential to the everyday functioning of the hospital is, in Michaels’ view, no longer a component of service both to patients and to medical personnel. Michaels’ experience with the biomedical model of disease is instead at odds with his needs as an ill person. The text therefore argues for a re-conceptualization of patients as participatory subjects in their treatment. In Michaels’ arguing for this re-conceptualization, he charges the medical, political, and social conceptualizations of biomedicine as negative discourses of and on tidiness and disease rather than of and on health and illness.

In Culture, Health and Illness, professor of medical anthropology Cecil Helman identifies the essential difference between medical and lay views of sickness as summarized in a distinction between “disease” and “illness”: “Disease represents the doctor’s perspective because the biomedical version requires an understanding of pathology that is discrete and rational. Within this model, disease is delimited and categorical, an identifiable entity residing in the body of a host.” In contrast, illness “is the subjective response of the patient, and of those around him, to his being unwell”

(91). Helman argues that medical professionals understand disease on a “rational” level, one opposed to the assumed highly unstable emotional level of understanding exhibited by patients and their loved ones. The medical view of disease is objective and therefore objectifying, using a biomedical model that requires expert knowledge in

order to determine ostensibly proper courses of disease eradication. Illness, on the

other hand, is experiential and subjective, the sphere of the un-authorized layperson.

The discourse of tidiness is borne in Unbecoming in terms of examples and discussions of tidiness as being directly in contrast to (though masked as concern for) healthiness, or subject-oriented care, as Michaels conveys the differences. Moreover, the objectification of the patient inherent in the discourse of tidiness relegates patients to the status of non-participants in their medical care. Reification voids the person of point of view and subsequently inhibits the individual’s ability to speak out successfully in his or her own favor in order to add to or to contradict the biomedical model of disease being enforced, whether or not this is the physician’s intent.

Richard Gwyn presents an instance of such reduction, citing a common occurrence in clinical practice: two parents bring their young child into the doctor’s office for treatment. The child has a sore throat and a fever and has been vomiting.35

Once the doctor initiates discussion, the parents report their child’s symptoms one by

one. Gwyn makes a point of noting that the doctor depicted in this instance is a

“professed supporter of shared decision-making strategies” (80). Yet, despite the

doctor’s support for patient participation, at several points he appears not to listen to

the child’s parents, asking questions that elicit responses already given to him by the

child’s father. Because the father offered the details without prompt (other than the

doctor’s generic “okay how can I help?”), the information is given out of the doctor-

enforced order of the interaction and is thus immediately re-processed in the desired

35 See Appendix B for transcript. 86

order by the doctor. In the remainder of the interaction, the doctor examines the child, determining that Ali is “quite hot” (82). He then goes on to check Ali’s throat, first calling it a “sore throat” and then renaming it “in medical terms . . . tonsillitis” (83).

Once the disease is given a properly medical name (“tonsillitis” rather than “sore throat”), the doctor asks for the parents to present ideas for treatment, ideas which they do present and which the doctor rebuffs directly. The doctor then enforces a course of treatment and in doing so negates the family’s experience with illness in favor of a treatment of disease. When the father asserts that his older son has received antibiotics for the same disease and that these antibiotics have lessened the duration and severity of his son’s symptoms and the family’s overall distress, the doctor responds to the father’s request for antibiotics with a faintly derisive “you would like to do that would you?” (86). He further supports his own treatment plan with the unspecific claim that using antibiotics “can cause sickness” at some later unidentified point (86). Rather than connecting with the parents and their concern for this particular illness experience, the doctor suggests that if they do not enact his treatment “advice,” the child’s future disease will be their fault. By this presentation of authority in treatment, one reinforced by the objectifying biomedical model of treating disease rather than illness, the doctor shifts blame onto the parents for a future disease and illness if they fail to follow his prescribed plan. As Gwyn claims, this interaction presents facets of how “a doctor’s decision-sharing strategies can be disrupted both by the inherent power imbalance of the consultation, and by the doctor’s own preferences for treatment” (80).

Medically naming the treatable element of the child’s sickness—disease

(tonsillitis), not experience (sore throat)—does not assist in co-construction of the

illness story. Instead it reinforces the power divide between physician and layperson. In

such physician-patient interactions, the physician has the ability to constitute

importance through naming and to enforce the treatment dictated by that named disease, thereby denoting his subject position. With thus “schooling” the parents, the doctor also implicitly names his ability to identify the disease and therefore to treat it.

The physician uses his authority as medical professional to refocus clinical importance from the illness experience of the patient and family (their reason for coming to the clinic) to the biomedical parameters of disease (the focus of the physician’s treatment).

In the above example, this naming also identifies the balance of power framed by the doctor’s initial and final questions “how can I help?” and “you would like to do that would you?” The progression is one from a directive—meant to elicit both a description of the problem and an implied request for assistance—to an expressive—a derisive dismissal of the parents’ request. The position of patient-as-text(ual object) in disease diagnosis and naming provides the bridge between these two speech acts and redirects the focus of patient care away from illness experience and into disease treatment.

In response to the biomedicalized view of patients, there has been a recent upsurge in the calls for attention to patient narratives of illness and a move away from this categorization and treatment of the patient as disease, or the patient as tidy-able.

With doctoral degrees in both medicine and English, Rita Charon has helped to bring the necessity of medical understanding of patient narrative to the attention of medical

personnel.36 These initial discussions of patient narrative, however, reinforce the position of patient as a text to be read and the physician or medical professional as the necessary and skilled reader. It is an erroneous and unhelpful move in theories of medical narrativity to position the patient as readable text in search of medical interpretation. Doing so serves not to assist in doctor-patient co-construction of illness story, as Charon purports, but to thwart such joint construction in favor of a doctor- mediated construction of pathologic disease (patient-as-object, as “text”) opposite to

the intended result. Anne Hudson Jones in “Reading Patients—Cautions and Concerns”

argues against this positioning of patient as readable text in search of a doctor-reader.

She suggests that when the patient is able to participate actively “in constructing the

narrative of his or her illness, the doctor should engage the patient in a process of

collaborative interpretation and story construction . . . . [I]t is important to seek a

dialogic reading” (194). Jones argues for the participation of both patient and medical

professional in story construction, one that does not rely on just pathologic signs. I

acknowledge that participation in such an endeavor will likely never be made on equal

footing given the unavoidable power imbalance intrinsic to the doctor-patient interaction, and certainly Unbecoming speaks to this imbalance. That Michaels feels it necessary to “keep another set of definitions going” (Unbecoming 5) against those inflicted on him via medicine speaks to the fact that joint participation within the medical context is an ideal. And as evidenced by the above example from Gwyn, the execution is often difficult and the outcome counter to the desired effect, even in the

36 Rita Charon, “Doctor-Patient/Reader-Writer: Learning to Find the Text” (1989); Narrative Medicine: Honoring the Stories of Illness (2006). 89 care of a physician open to such joint participation.

Disease naming engenders the biomedical view of patients both as disease and as conveyors of disease (objects without self-stories) and results in sociomedical actions that do not denote a primary concern for the ill person. Several points in Unbecoming demonstrate the objectification inherent in interactions that elevate concerns of disease over illness. Rather, the primary concern of medical personnel in the text appears to be for the medical institution, which favors a system of risk management, a tidiness control, distinct from illness treatment. This view has far-reaching consequences for patients and contributes negatively to their conceptions of their own health and subject-ness, a circumstance often evidenced in autothanatographical writing. In

Unbecoming, for instance, Michaels recalls spending the weekend of April 30–May 1,

1988, in the hospital receiving a blood transfusion. The nursing staff has permission to insert the transfusion needle and to pump blood into Michaels for sixteen hours but not, he writes, to remove it: the nurses ask if he will “authorize the removal [of the needle] and relieve them of legal responsibility” (86–87). Michaels implicitly critiques both the ordering physician’s oversight and the nurses’ request as an elevation of concern for the bureaucratic functioning of the hospital rather than of the nurses’ concern for treating him. For once the treatment is outlined, any deviation from express instructions, including the performance of logical acts (such as removing a needle after treatment), even for the benefit of the patient, is a legal liability. Bureaucratic tidiness supersedes

Michaels’ needs as a patient and as an individual.

The importance of this implied critique is evidenced in Michaels’ writing of his

90 struggle to remain in Australia despite his AIDS diagnosis, a central concern of the text.

Shades of this worry color each record of Michaels’ interactions, social, medical, and political. The text makes clear his growing panic as each step of his application for

Australian residency is denied and then passed along to another government representative. Unbecoming includes the text of the final letter that Michaels received from the Department of Immigration and Citizenship, supplied by the executor of

Michaels’ estate as an essential political health document to be included in Michaels’ autothanatography (110–116). In this letter regarding Michaels’ final appeal to remain in Australia, Dario Castello, the State Director, notes that the decision to refuse

Michaels’ Permanent Resident Status request has been made by an officer authorized under Section 6A of the Migration Act 1958, designed to regulate the status of persons who entered Australia on a temporary basis. If Michaels were to request further temporary stay in Australia, his request would be denied (110). Among other, less notable legalese pertaining to Michaels’ status as having “‘Evidence of AIDS’” (114)— and that such evidence is grounds for refusal of resident status—is the statement that

Michaels is using the public health care system in Australia.

The Immigration representative, J. Donnelly, admits that Michaels has paid his

Australian taxes including the Medicare levy. It thus “can be argued that Dr. Michaels has a right of access to the Public Health system,” according to Donnelly (115, emphasis mine). He does not fail to note, however, that “Dr. Michaels’ therapy costs for the next twelve months or so,” the longest length of time Michaels is expected to live, will be

“borne by the state” (114) regardless of his payments into the public healthcare system.

One official statement reduces Michaels from tax-paying contributor to unviable non-

participant and sad drain on the public system. But this statement—that the costs will

be borne by the state—serves more explicitly as a buffer for what the government understands is the real threat to Australia, that Michaels is a risk to the health of the nation on the whole. The Commonwealth Department of Health “advises” that “in addition to the very expensive health care costs Dr. Michaels will incur as his disease progresses, there is also the risk that Dr. Michaels could pass on the disease to others”

(114). In regard to ensuring public safety through the eradication of risk, this government concern is valid if one presumes that removing all potential sources of risk, and doing so at the cost of individuals, is to the benefit of public health. The response also conflates Michaels and “the disease,” however, and assumes that Michaels is not in control of related transmission (i.e., that he may willingly and/or knowingly infect others).37

Queensland’s approach to HIV/AIDS prevention in the 1980s and 90s mimicked

the American model, stressing the danger posed by at-risk groups to the general

population. The State government of Queensland, Australia, where Michaels lived and

worked as an American citizen and Australian transplant, did not follow the Australian

federal government’s deviation from the US HIV/AIDS model of risk and blame

associated with marginalized at-risk groups and public services meant to assist them.

Most Australian states and territories chose to include representatives of the

37 I acknowledge that medical accidents occur and that resulting transmission would in fact be outside of Michaels’ control. The phrasing and context of Castello’s statement, however, suggest Michaels’ culpability, not accidental transmission. 92

communities most affected by HIV/AIDS in a partnership with political and medical

experts. Their aim was to determine responses to the emerging pandemic. Queensland

(and Tasmania) did not include such representatives. The result in Queensland was an

approach to HIV/AIDS prevention that stressed the dangers posed by at-risk groups, as

well as the targeting of at-risk and infected individuals through testing and coercive

laws. Contrary to this Queensland policy, the rest of Australia’s public health authorities

sought to instill an understanding of widespread risk of HIV contraction that is

dependent on unsafe practices rather than on group membership (i.e., the message that everyone is at risk, not just marginalized groups), ultimately to great effect.

Queensland’s health authorities and social systems, however, targeted at-risk groups and sought to imply and in some instances emphasize the overall safety of the general population excepting those in contact with or membership in these at-risk groups. In short, HIV/AIDS was presented as a disease brought to Australia by gay male US citizens

(and to some small extent by US intravenous drug users), an assertion that Michaels’ presence and health condition appear to confirm.

The resulting model was one that called on the traditional model of disease prevention as an activity in which only physicians and medical professionals and researchers could engage, a move which translates into a projected lesser disease prevention effort by average citizens. This, in turn, tended, as it did in the US, toward identifying and restraining infected individuals on the assumption that those infected persons were incapable of acting “rationally” and would instead spread disease and perhaps even willfully endanger the lives of others—as is implied in Donnelly’s

statement above. Again as in the US, the model also reinforced the notion that those

with HIV/AIDS were somehow deserving of their infection, as they must have contracted

the virus through knowingly engaging in unsafe sexual practices or injection drug use

with dirty works. It should be noted, too, that no Australian state was willing to act upon all of the recommendations of the AIDS Councils and the Commonwealth’s chief advisory committee, and all states had strict laws against the “intentional” or “willful” transmission of HIV.38

The medical and political view of PWAs as “other” than the general population is

more than merely adopted in popular culture in Australia; it is reinforced by

authoritative presence in popular media, as well. The documentary aired on SBS titled

Living with AIDS is but one example. Michaels finds the documentary disappointing and

“Very Canberra-political” (Australia’s capital city). He notes the presence of various at- risk groups: “lots of hemophiliacs. Poofs at meetings, looking concerned, only one gay victim. It was good to see him, though, poised at the piano with the family snaps on the lid, playing ‘More’ for all he was worth, smiling bittersweetly through his lesions.” This might, in a limited sense, seem a humanizing discourse—the many voices of HIV/AIDS or some such designation. But, comments Michaels, after this bittersweet public service message, “Health Minister [Neal] Blewett comes on to remind me that we (gays, IV drug users, hemophiliacs) are not members of the ‘general public’—a point which gnawed at

the program’s entire text and was hammered home dreadfully in Blewett’s usage,

38 For more information and an inclusive and detailed discussion of Australian governmental and social responses toward HIV/AIDS until the turn of the century, please see Paul Sendziuk, Learning to Trust: Australian Responses to AIDS (2003). 94 despite his overt and explicit sympathies” (Unbecoming 122–123). Making such a statement in a mainstream and purportedly non-political forum reintroduces and reinforces the intersections of social and medical discourses that again, as in State

Director Castello’s letter, adopt the view of the individual rather than disease as the risk to society.

The decree that Michaels is denied residency comes from the highest levels of immigration law in Australia rather than as a product of Queensland State policy. The theory behind the two is the same, however: Michaels-as-disease poses a threat to the health and wellbeing of Australia. The Australian public concern is directed via health policies to a widespread risk of contraction dependent on unsafe practices, not on group identity; yet, the demonstrated political and medical concern includes dangers posed by at-risk groups no matter an individual’s actual engagement in safe or unsafe practices.

The connections between the two are often tenuous. Michaels, in particular, writes of his lack of sexual partners in recent years as well as the absence of desire to have sex with others (43–44). The government letter included in Unbecoming reinforces the government’s belief that Michaels’ status as HIV-positive overrides the possibility of such individual practices or desires. Yet again, HIV/AIDS is understood, this time politically, as a foreign disease perpetuated by members of particular groups, a circumstance that needs tidying, an assertion that Michaels’ presence and health condition appear to confirm according to both these government documents and

Unbecoming.

The most illogical and demeaning of political rhetoric in this refusal to grant

Michaels resident status is buried further in the letter in section 6.7 and again in section

6.13 (almost verbatim). Immigration representative Donnelly slips into his arguments a xenophobic and homophobic diatribe against Michaels as the embodiment of a greedy and undeserving medical consumer: “I have also considered that the treatment being offered to Dr. Michaels may eventually be at the expense of an Australian citizen or resident who may also be suffering from the disease or another patient who requires the intensive care equipment which Dr. Michaels will need at the later stages of his illness” (114). What Donnelly suggests initially is that Michaels is not entitled to medical care as a non-resident. If Michaels were granted residency, he would be entitled to this medical care, but it would come at the expense of the medical care of another HIV- positive citizen or, in a blast of circular logic, resident. Donnelly returns to the fundamental point: that if Michaels were to be given the medical treatment that

Donnelly is certain will require “intensive care equipment,” it may be at the expense of another patient who requires the same equipment in the same hospital at the same moment. The implication of this assertion is that the possibility of Michaels’ needing the equipment outweighs his previous financial participation in the system that is intended to guarantee access to it. Michaels-as-disease is the risk. Michaels is the one who, if he stays in Australia, will be wrestling bureaucratically with an Australian over intensive care equipment in the Royal Brisbane Hospital. Donnelly justifies his decision by arguing that the Department “has an obligation to protect Australian health standards . . . and . . . to allow Dr. Michaels to stay in Australia would be contrary to that obligation” (115). This forced expulsion of the foreigner in favor of the “health” of the

country is in Michaels’ view another facet of tidiness. He calls the letter a “dreadful and

insulting document” and notes that its “illogic seems . . . so obvious, its facts so flawed,

that this would be evident to anyone reading it” (116). Michaels’ remarks imply that

expelling foreign PWAs provides only a tidy appearance, not enhancement of health. He

is reluctant to acknowledge any possibility that Donnelly acts in service to Australians or

to the benefit of the Australian health system. His reluctance indicates again the limited

and inward focus of his autothanatography.

The government letter was included at the discretion of Michaels’ editors after

his death and is presented as an “essential document missing in the diary” (footnote

110). The letter is offered, according to the editors, in order to contextualize the diary

entry which it precedes.39 It also provides rhetorical evidence for many of Michaels’ textual claims of sociomedical maltreatment and objectification, most especially at the hands of the government-run medical complex. That Michaels did not request that the letter be included suggests that he felt its inclusion unnecessary (he makes comparable requests in the body of the text). Specifically, he understands his personal documentation as a sufficient record of evidence and enough to prove his philosophy of socially and, at times, politically motivated medical tidiness.

The letter’s inclusion signifies that Michaels’ editors do not share his

understanding of his own textual authority. For instance, their claims of context are

wholly unnecessary; the diary text itself provides context for the entry in the frequent

allusions to Michaels’ application to remain in Australia. Rather, the letter’s inclusion

39 Note the editors, “The following letter is discussed in the next entry” (110). 97 implicitly argues for the need to augment autothanatographical writing with official and, at least theoretically, less biased and thus appropriate documentation. Emily Shore’s editors condensed and removed portions of her text, for example, but they also supplemented it with their own notations and interpretations of the contents, seeking to (re)contextualize the entries. The editors’ impulse in Unbecoming is similar in that this perceived need for extraneous contextualization overrides the autothanatographer’s own textual design. The less-personal historical or political testimony included by the editors in Unbecoming provides an objective and verifiable

(even a tidy) record of authorial experience. In colloquial terms, the letter demonstrates that Michaels’ perceptions of mistreatment because of disease were not all in his head. One might view including the letter as a necessary rhetorical move on the part of the editors, then, one meant to stave off potential accusations of Michaels’ personal biases or of delusions brought on, perhaps, by AIDS-related encephalitic lesions. Without the letter, the reader would have to rely on Michaels’ written word regarding much of the unfair treatment portrayed in the text, a difficult prospect given its cantankerous tone.

That this inclusion is made solely by the editors is underscored by the fact that

Michaels directly requests the textual inclusion of other letters. These are letters that he writes but never intends to send. They highlight his fractured and politicized experience with AIDS. One letter begins confrontationally, “Gary, you asshole” and ends

“Of course, I will not send you this letter. But I shall include it in my diaries and hope that my editors include it in the posthumous publication so that you will be inscribed

forever in shame and political disgrace” (35, 36). Another letter, this one to a carpet

cleaning company that scented (and damaged) rather than cleaned his carpets, just as

directly remarks that “the legal replies open to me are limited. . . . It would cost more to

seek satisfaction than I could gain, a fact all you shonky penny-ante predators depend

on” (36). Both rail at the inconsistencies of personal and public social contracts and the

skewing of power structures in these transactions, made all the more conspicuous when

one of the parties is a foreign person with a terminal disease. Social contracts in these

cases are meaningless, and the political ramifications are clear for Michaels: he either returns to the US where he no longer has a home or he dies before the Australian government is able to deport him. In contrast to the inclusion of the government letter in Unbecoming, the addition of these personal letters signifies not the editors’ ability to control textual content, but their desire to follow through with Michaels’ wishes concerning the text. Michaels, in fact, seems to foretell this outcome, observing that his

“own posthumous editorial voice keeps resurrecting from a cheaply ironized gallows”

(34). Like the other letters, the government letter provides a rhetorical bridge between objectifying tidiness practices inside and outside of the medical setting, and it constructs this bridge through its blend of the social and medical realms of tidiness discourse. This chapter will now turn to discussion of these two realms and the ways in which they inform Michaels’ writing and understanding of his own subjectivity within a sociomedical context.

Tidiness acts as a guide for Michaels in his own complicated record of his

otherwise personally incomprehensible situation. For example, Michaels adopts the

widely accepted medical theory of Kaposi’s sarcoma lesions as a definitive sign of one’s

having AIDS. Michaels’ memoir focuses explicitly on the body text, on markers available

to pathologic observation and naming. In doing so, he presents his own body as an

object or text open to interpretation by others. This is a type of self-tidying produced

through a mark of disease—KS lesions—that is neither wholly separate from the body

nor intrinsic to its operation. As a result of this self-objectification, Michaels appears

textually preoccupied with object-oriented manifestations of disease. He notes that he

“can’t believe everybody doesn’t have AIDS.” He remarks, “I don’t refer to any abstract

calculations. In fact, I watch people very closely, especially their skin, for signs” (5). This

preoccupation is evident from the beginning to the end of the text. The book opens

with Michaels watching

these spots on my legs announce themselves over a period of weeks,

taking them as some sort of morphemes, arising out of the strange

uncertainties of the past few years to declare, finally, a scenario. As if

these quite harmless-looking cancers might, when strung together, form

sentences which would give a narrative trajectory, a plot outline, at last

to a disease and a scenario that had been all too vague. . . . A moment’s

relief: it’s come to this. The narrative clear and insistent. (3)

Michaels argues that once disease manifests in plain view, the body is a text that deprives the author of narrative control. It is worth noting the explicit nature of what

Michaels is asserting. The “narrative” of HIV/AIDS is a clear one, insistent, he writes, but

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while the narrative of the disease is clear, the story of personal illness experience is not.

He connects the term “narrative” to “a scenario,” a plot outline or script of disease, rather than to the details of illness. Within that plot outline, there may be any of innumerable turns of storied events, many of whose parameters Michaels will not be able to dictate himself. The disease markers present only the outline of what is to come. They cannot in themselves fill in the details of Michaels’ story. As he notes later, he has a disease of a thousand death rehearsals (94), any of them viable, even probable ends.

Significantly, Michaels does not invent his own language of illness. Rather, he assumes the signs and signification presented by the established discourses of disease: the presence of KS lesions on a gay man means there is one possible narrative. A reading of even this brief excerpt suggests that Michaels is applying an object-based sociomedical script to even the beginnings of his illness experience as he knows them.

The script bears a theme of tidiness to which Michaels returns frequently, revising as each new trauma on or in his body announces its presence. What becomes clear to him along with the narrative trajectory of his disease is the inevitability of the death now written on and with his body. At this point in Michaels’ experience, the illness story has yet to occur: it begins in earnest with his stay in “Wattlebrae,” the infectious diseases ward of the Royal Brisbane Hospital in Queensland, Australia. 40

Michaels writes of the relegation of PWAs to this ward, a move which he argues

40 This name, as Michaels hints in Unbecoming, has associations with a particular group of Australian “Wattle Brae” breeding and racing stallions, a euphemistic connotation that Michaels finds strangely deceptive. 101

demonstrates an overarching concern for the maintenance of sociomedical tidiness

rather than for patient health. “The very idea that PWAs are placed in an infectious

diseases ward seems to me criminal insanity,” he fumes, “or extreme malevolence. . . .

AIDS is not an infectious disease [in the sense of airborne, urinary, fecal, or salivary

transmission]. But we are terribly susceptible to disease. . . . I’m terrified to go out of my room into this tidy world” (17–18). The risk the virus poses to medical personnel who might come into contact with a patient’s infectious fluids (i.e., blood, breast milk, and sexual fluids) is equal to that as when PWAs are placed in other wards that pose fewer threats to PWAs’ health. In contrast, HIV/AIDS patients are in more danger of contracting airborne diseases and staph-infections from personnel and other patients when in an infectious diseases ward than when in other wards because of the increased prevalence of readily transmissible (i.e., air- and surface-borne) bacteria and viruses. By

Michaels’ estimation, therefore, the placement of PWAs in the infectious diseases ward denotes a hospital placement based on the tidiness practice of naming and the reification of patient-as-disease rather than one based on concern for patient care.

Michaels charges several interconnected ideas at work in PWAs’ placement in the infectious diseases ward. Each charge relies on medical personnel’s object-centered categorization of disease as a stand-in for the patient rather than the patient as a participant in illness and health experience. The first is that hospital personnel rely on ward categorization when determining risk and danger to personnel as it regards the handling of bodily fluids and tissues. It might be supposed that all care is taken in the management of fluids and tissues each time they are handled by medical personnel no

102 matter their purveyor. However, a primary reason for placing PWAs in an infectious diseases ward, that is, that their fluids and tissues are “infectious,” suggests that this must not be true, that these fluids and tissues are handled with care according to the infectious nature of disease as denoted by ward.

Following the logic of this tidiness practice, from disease to the body (in the form of fluids and tissues) to the holistic self of the patient, I assert that the nameable disease these fluids and tissues carry (or are likely to carry) acts in medical perception as a stand-in for the holistic self of the patient. Of his stay in the hospital, Michaels writes of medical personnel’s acting upon the patient as if the patient were synonymous with disease. That is, the hospital’s focus is on the patient as risk to others. The resulting action (quarantine) is not, then, concerned with treating the patient but with naming the disease. Ward categorization of the patient is intended to limit the spread of this particular type of risk in the hospital environment (as is the related practice of marking tainted blood with labels that say “Danger” or “Caution”). There are numerous difficulties with this categorical arrangement, one of which is the fact that this containment is in no obvious way limiting the spread of HIV/AIDS. The distillation of patients and their illnesses down to the barest and tidiest of fractions (Michaels’ morphemes), the naming and subsequent categorization of disease, impedes the possibility of a larger medical understanding of patients’ needs.

Early in Unbecoming Michaels notes his “reportorial” intent in beginning the text when he does. He has just spent two nights undergoing inconclusive tests in

Wattlebrae:

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Mama, you wouldn’t believe how people treat you there! It’s not the

rubber gloves or face masks, or bizarre plastic wrapping on everything.

It’s the way people address you, by gesture, by eye, by mouth. And yet,

done with the tests, I walk out on the street, go to work, and assume a

comparatively normal interactive stance and distance. What begins here

is a process of labeling, a struggle with institutional forms, a possible

Foucauldian horror show, which must be resisted, counteracted

somehow. (4–5)

In pointing out the treatment that he receives, Michaels notes not only a pervasive

sociomedicalized view of the patient as named and labeled disease, but also the

hospital’s apparent divide between medical and social responsibility. Michaels’

comparatively normal stance is comforting and confusing to him. He can go about his

daily business without encountering the pervasive tangible reminders of his infection in

the form of grotesquely masked surfaces and people. Yet, he implicitly compares the

illogic of his treatment in the ward to his release into larger society, where things and

people are not typically covered in protective plastic. If he does, indeed, pose such a

great risk to others, the hospital is wrong to discharge him. Their reliance on naming

and categorization provides hospital personnel their own script, including their own language of interaction borne through addressing the patient through their masked countenances and rubber-gloved gestures. The question is not “Whom are they protecting?” but “What sociomedical language are they creating and, through exchange, reinforcing?” The language is that which marks the label and the labeled as dangerous.

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Michaels’ problematizes this comparatively normal stance in future journal entries in which he writes of his objectifying interactions outside of the medical environment, such as in the instance with the rug cleaning.

In Unbecoming, sociomedical naming and the practice of categorization prompts medical personnel to rely on pathologic disease manifestation rather than the incorporation of patients’ stories of illness and health experiences. Naming and categorization could therefore have undue bearing on the treatment of the patient, limiting to mere disease control what could, and perhaps should, be something approaching holistic practices. Significant to discussions of autothanatography in general is that a great portion of one’s illness and health experiences can be vastly different or quite similar to others’ experiences regardless of disease difference or similarity. Gwyn acknowledges that “accounting for illness tends to correlate with the psychological, moral and social explanatory models of any given culture; so that the objectively defined disease will not be experienced as the same illness by individuals”

(35). Three of the autothanatographies under examination in this dissertation are written by authors with AIDS; yet their experiences differ widely and are determined in large part by several extraneous factors including but not limited to location, previous life experience, social and financial status, occupation, and quality and quantity of treatment. Their disease is the same, HIV/AIDS, but their illnesses are not. David

Wojnarowicz’s experience with illness is one that he binds with his peers, those others whom he narrates in his text. In contrast, Harold Brodkey attempts to distance himself from a gay sexual past that he is convinced is the root of his disease. Neither author

105 suffers the isolation and resultant circumstances that Michaels does.

The categorization of PWAs to the infectious disease ward for tidiness’ sake (in naming and categorizing patient-as-disease) appears to preclude, or at least to fail to acknowledge, the possibility of illness differentiation. It instead focuses on whether a particular disease is transmissible. The categorical tidiness of the hospital also reflects an overriding engagement with the discourse of risk in various forms, and the next section of this chapter will be taken up in their discussion and examples, before I turn to a discussion of risk and tidiness in the wider social and political struggles of which

Michaels writes.

The categorical tidiness of the hospital reflects an engagement with risk in various forms. Michaels’ examination of hospital practices goes beyond PWAs’ essential classification as “infectious diseases” and alights, too, on the general maintenance of the hospital. In doing so, he exposes the duplicity inherent in tidiness practices related to the upkeep of the hospital environment, one supposed to exist for the care of patients. What Michaels outlines as the tendency of the staff to “tidy” rather than to clean the hospital comes, like patients’ relegation to the generic infectious diseases ward, at the expense of patients’ holistic wellbeing. From Michaels’ point of view, institutional concern is for the appearance of care rather than for care itself.

One of the many examples of this institutional tendency is the obsessive waxing of the hospital floor. Michaels writes, “Twice a day, the floors of Wattlebrae are waxed to the highest possible gloss. . . . But it seems to me that wax has nothing in particular

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to do with germs” (17). In fact, Michaels is convinced that the waxing serves only to

imbed the germs into the cracks, thereby perpetuating their survival and the risk to his

own health. No matter if the waxing gets rid of or, in fact, imbeds the germs, Michaels

realizes that the patient is not the audience for these high-gloss sea-blue floors

stretching down the corridors. The discrepancy between tidy and clean (tidiness and

healthiness, object-centered and subject-centered discursive practice) becomes “all the

more dramatic if you’re actually the one sick and on your back. From the staff’s upright

point of view, the floors must seem quite impressive, but in bed you barely see them.

What you do see is the ceiling, paint cracked, peeling and falling into the water jar,

ceiling fan blades edged in dirt and encrusted with insects” (17). The staff is attentive to

none of these things, for they tend to walk through the halls and rooms rather than be

taken through them on wheeled stretchers or while lying in bed.

Another example is the fuss over cleaning what he calls the dorsal surfaces in his

room, 41 including, in particular, the mobile table that fits over his bed. Michaels comments, “The top is cleaned twice [and the] underside, with which I actually come in contact, hasn’t been swabbed since 1942 as far as I can judge” (17). Michaels’ presentation of these instances—that of the waxed floors and filthy ceiling, the swabbed table top and neglected underside—dictates his awareness of the negation of his point of view. His perspective appears to be of no consequence to the staff of the hospital. Their vision is that of the upright and freely mobile individual walking through the corridors and rooms, the financial donor, the supervisor, or the visitor: the subject

41 Michaels uses the term “dorsal” to mean top rather than top-back, as in the dorsal fin of a dolphin. 107

entitled to a recognized (and recognizable) point of view. The underside of the table

that touches Michaels is not a staff concern, by these measures. Not only does no one

else encounter it, but Michaels is also already dirty by virtue of disease. Of course, he

does come into contact with the top surface of his table while he is eating and typing.

He neglects to mention this, preferring instead to offer examples of his tidiness

philosophy rather than to explore its blurred boundaries and potential places of overlap.

This reluctance to delve deeper into his hospital experiences demonstrates how much

the conceptual lens of tidiness colors his textual documentation.

Michaels, like the hospital staff, attempts to gather his audience closer using strategies meant to reinforce an already established point of view, one that has direct bearing on Michaels’ understanding of medical and social illness experiences both in and out of Wattlebrae. In their actions and text, respectively, the hospital staff and

Michaels construct arguments with a particular, rather than a universal, audience in mind. According to Michaels’ portrayal, the argument of the hospital personnel is that patients are dangerous objects and must be tidied (or put away); they are also to be feared for their potential to contaminate. Contrary to this objectification, Michaels’ argument is that he is, in fact, a subject, albeit one who is being treated as an object.

Yet Michaels’ own lines between the two appear blurred. Take, for instance, his application of the organic term “dorsal” to his table. Michaels uses an anatomical term for inanimate objects in the hospital setting, pointing to his own unfixed line between subject and object, via personification. He takes up the discourse of the hospital, lumping all non-participants together (animate and inanimate alike). Rhetorically, the

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table becomes an extension of his own bodily limits, the visual tidiness that overlies the

internal (or underside) dirt.

These examples again highlight that Michaels’ interpretation of tidiness is one of

object- rather than subject-oriented discourse. That is, tidiness’s focus is on the relegation of all patients to the status of objects, their categorization, appearance, and

ease of management. Tidiness relies on the perspective of the healthy rather than the

ill. It pertains to discrete objects rather than holistic environments. It separates rather

than unites. In short, the action and rhetoric surrounding tidiness cater to those who

are already, for the moment, healthy and so in a position of some control. The focus is

tidiness not health; the audience, medical personnel, staff, and visitors, not the patient whose health is at risk—the patient is the risk that must be controlled by this tidy environment. If all it takes for Michaels is a single look at the ceiling while lying in his hospital bed to notice that whether the floors are waxed makes no difference, it becomes rather clear that he is not considered a participant in his own health. Michaels posits this tidiness as facilitating the comfort of the fit. These other surfaces are not cleaned by the staff because these surfaces bear no relevance to the staff’s endeavors or to the staff’s points of view or to the points of view of those others with whom they are concerned and at whom their tidiness practices are directed. The duplicity inherent in such practice is made all the more clear to Michaels through the hospital staff’s indulgence in rubber gloves, face masks, and plastic wrapping when interacting with

PWAs and then releasing PWAs from the controlled hospital environment with no transitionary process.

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Ultimately, it is not a lack of cure or definitive course of treatment that informs

Michaels’ writing. Rather, it is the depersonalizing discourse of tidiness that becomes

the target of Michaels’ dissatisfaction with his medical treatment in Wattlebrae.

Accordingly, this dissatisfaction consumes the text. Michaels fixates on the duplicity of

what he encounters in Wattlebrae and extends it to social and cultural displays of his

wider world, an aim which points to the reciprocity inherent in medical and social

discourse. Writing of living with a terminal illness, Michaels notes, “The hardest part

really is maintaining resistance to the institutional discourses of the public hospital

system so as to retain some dignity, assurance, and self-definition” (95). Unbecoming

interrogates the object-oriented concern with disease that fails to recognize the

patient’s experiences and perceptions of illness, that is, the discourse of health and

illness in which Michaels desires to participate. Michaels’ stated reason for keeping his

autothanatographical record is so that he may

keep another set of definitions going against the quite barbaric ones that

were inflicted in these last few days, through the rubber gloves, face

masks, goggles, and an inventory of tropes assumed lately by medical

practice to deal not so much with disease (which, after all, is imaginable

in some sense as well), but more evidently, no less, with sin and

retribution. (5)

Though never explicitly stated, one can extrapolate from the text that the “barbaric” definitions of which Michaels writes are those that are concerned with categorization and control of disease rather than with the patient’s health and illness. The “sin and

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retribution,” of course, is that which are levied out of fear against the person-as-disease,

not against the disease as discrete entity (a much less visible target), for “AIDS has been held to be the expression of divine anger against . . . depravity” (Schoub, AIDS and HIV in

Perspective 219). In the above passage, Michaels writes not just of tropes that tend toward othering the patient, but also of the interplay among social and cultural materiality and the practice of medicine. Anthropologist Nancy Scheper-Hughes and medical humanities professor Margaret M. Lock note that “the cultural images and representations of the ‘master’ diseases of our time—cancer, heart disease, schizophrenia, AIDS—are more ugly than sublime, more degrading than elevating, more exploitative than consoling. In short, the societal and cultural responses to disease create a second illness in addition to the original affliction” (137). The stigma, rejection, and fear that attach to particular diseases are transferred to the patient in the form of this “second illness,” a “doubling”:

This happens the moment we say . . . “this person is a schizophrenic” or

“this gay man has AIDS” (with all that this implies for specific historical

and cultural reasons). We begin to . . . respond to . . . the cultural

representation of the disease, knowing full well that schizophrenia

implies a disease “for which nothing can be done,” and that AIDS implies

a “sexual plague.” (137)

The designation “person with AIDS” or “PWA” is one cultural attempt to reclaim a sense of personhood in confronting a depersonalizing disease.

Working in conjunction with this depersonalization, and another troubling aspect

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of this tendency toward reification, are the limitations on medical personnel’s

understanding of illness experience as including and far surpassing the mere diagnosis

and treatment of symptoms. Of considerable importance is that HIV/AIDS in this early

period (1981–1990) was viewed by the public as a disease among members of

marginalized groups including males who had sex with other males, injecting drug users,

and sex workers, so-called “at-risk groups.” Consequently, observes sociologist Jeanine

Cogan, “the stigma attached to AIDS also serves as a vehicle for expressing preexisting

hostility toward members of disliked social groups” (Stigma). Michaels implies that the

zealous wrapping of both medical personnel and hospital instruments (in particular

those that do not touch the PWA) are markers of just this sort of preexisting hostility.

The face masks in particular confound Michaels, and perhaps logically so: the protection

to all those involved is incomplete. Everyone breathes in the recirculated air of

Wattlebrae; once the doctors and nurses leave the patient’s hospital room, they, too,

are breathing it.42 Rather than appearing in the service of health, the masks act as a visible separation between PWA and caregiver.

Such separations are enforced outside of the hospital in social constructions of

patient illness as disease, as well. The autothanatographical memoir At Your Own Risk:

A Saint’s Testament by Derek Jarman (1992) includes a long list of headlines and graphs from the early age of HIV/AIDS. Each offers a clear portrait of social media’s tendency toward scapegoating PWAs so that they, and not the virus, are the real danger. The

42 With the protection of face masks and the almost inexplicable use of goggles when in the presence of PWAs, medical personnel are taking the sociomedical model of risk associated with the PWA a step beyond ridiculous in their need to cover every exposed orifice including their eye sockets. 112

headlines and graphs are taken from the front pages of well-circulated newspapers the

Sun, News of the World, People, Daily Mail, Daily Mirror, and others easily recognized by

Western readers. What I include here is a fraction of what is in At Your Own Risk which itself includes only a tiny fraction of relevant headlines. Still, this small number is representative of a much larger whole:

THE NIGHT I MET MP IN GAY CLUB

GAY SANTA GETS SACK

AIDS MENACE: HE CARRIES KILLER VIRUS YET WORKS WITH SICK KIDS

More than 20 police raided the Royal Vauxhall Tavern in south London on

Friday night wearing masks and rubber gloves.

I’D SHOOT MY SON IF HE HAD AIDS, SAYS VICAR.43 (104–111)

Again, this objectification separates one from individual history at the same time that it

reflects a collective cultural understanding (or bias) that favors tidiness. The aim of these newspaper statements is to substitute the risk posed by disease with the risk posed by a group of people (itself interpreted through “life style”), thereby reducing the uncertainty and untidy possibility that the disease might be more universal and widespread.

Michaels’ perception of the erasure of the individual in favor of the “life style” collective provides another link between the text’s medical and social critiques. Though

Michaels appears to be singling out the hospital setting in Unbecoming, he widens his critique of the object-centered discourse of tidiness to include a larger cultural

43 Leo Bersani gives an interesting analysis of this very editorial in his article “Is the Rectum a Grave?” (1987). 113

understanding. Michaels sees the attempted erasure of historical and individual

characteristics in favor of tidiness in many unlikely places, even, for instance, while

shopping for antiques. The shops in Brisbane are notorious for refurbishing their

antiques. Michaels critiques the practice, arguing, “every sign of age is stripped from

the piece [of furniture]; it is dipped, stripped, sanded, polished, varnished, lacquered, and acrylicked. The result is always an ultra-glossy product, as indistinguishable as

possible from any new wares on the floor of a Myer’s department store. Antique

originals are converted into their own reproductions” (16). The deception Michaels

unmasks is the deletion of history in favor of a show of effort, a tidiness practice that

resembles that of the hospital staff’s scrubbing and polishing the surfaces on display in

Wattlebrae. Michaels continues, “it was their labor, far more than the objects, that they

[the antiques dealers] were marketing. . . . Objects themselves seemed to have no

intrinsic interest . . . . The miracle, and the value, came from the transformation of

something old, banal, untidy, to something seemingly new” (16). Here, Michaels’ points

to the redistribution of individual history into the collective cultural efforts of tidiness

and control, and not just in the hospital, though we find many parallels there.

The objects in the antique stores are still representative of collective history and culture, but they must be made more immediately palatable, disassociated with the individual signs of wear, mistreatment, even age. What people are buying when they buy these refurbished antiques, and what antique dealers are selling, is the erasure of each piece’s individual, importantly visible, history as well as the “cleaning up,” the making tidy of a re-narrativized and thus constructible cultural past. Each piece is

114 lauded for its tidy and therefore acceptable representation of collective cultural history

(a nostalgic harkening back to simpler times), so, too, is the craftsman that has brought the piece back in line with an ideological representation of cultural history. The individual original is reduced to a collective representation that adheres to culturally mediated boundaries of tidiness.

The importance to and the parallel with sociomedical discourse lies in the attempt to erase individual history in favor of a more palatable and/or biased cultural view. This view tends toward a single interpretation regardless of individual circumstance. In medicine, one sees this in the authority of the pathological signs of disease which override a patient’s personal story of illness experience. In Unbecoming, this view is demonstrated in the continual categorization of Michaels as himself a risk to the staff of Wattlebrae and, later in the text, to the entire country of Australia.

Michaels, an ethnographic anthropologist to the last, offers in the midst of his autothanatography an applicable observation regarding cultural practices of the

Aborigines he studied and with whom he lived and worked. He recalls the elaborate mourning ceremonies of the Warlpiri community at Yuendumu. He writes,

upon death, an individual’s property, image, even name, must be

obliterated. The camp is burned, people move away. . . . the name of

the individuals, or more precisely, names associated with the deceased . .

. go out of usage for roughly a generation. So do words deemed to

sound like the name. These are forbidden to the common lexicon, and

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proscribed in discourse.44 (9)

The contradiction that Michaels is pointing out, of course, is that having so much

attention focused on not naming the deceased ensures that the deceased is made all

the more present by the forced absence of his name. The deceased, then, will remain in collective memory for “roughly a generation.” For the purposes of Unbecoming,

Michaels simplifies this practice and deems it only one of keeping the deceased in memory. Michaels does not mention Warlpiri practices in terms of discourses of tidiness or of risk avoidance (in avoiding the accoutrements of the dead). The larger and perhaps unanswerable question that Michaels’ observation engenders, however, is whether the forced absence of naming of the deceased reflects an intended forced absence of memory of the dead, or, rather, if it distills the presence of the dead to a mere name (and naming) that is to be outwardly avoided while inwardly revered. But there is a sort of conditional tidiness at work here, too. The name of the deceased comes to signify not only the person, but the danger the dead can cause if invoked, for, he observes, “it is more than a terrible insult to invoke the dead . . , it means trouble”

(9). In this case, naming is the harbinger of danger, similar to that naming of a patient’s

HIV/AIDS in Wattlebrae. The naming points to a condition which one would like to avoid, death itself or, in a medical context, impending death in the form of terminal

44 Michaels is referring to somewhat outdated practices when he contends that the “camp is burned” and verges on the hyperbolic in his assertion that the individual’s effects are “obliterated.” Warlpiri custom previously dictated that a deceased person’s house was demolished soon after death; however, with the relegation by the Australian government of indigenous peoples to settlement housing, these practices were altered and destruction of the deceased’s living environment was halted. Instead, “the house most closely associated with the deceased was deserted indefinitely and close relatives were required to move. Houses were initially avoided, then swept and cleaned, and finally reallocated to an appropriate person,” generally the deceased’s uncle on the mother’s side (Cathy Keys, “The House and the Yupukarra” (2000) (126)). 116

disease.

Michaels realizes and critiques the impulse toward tidiness, and yet, he has

moments of blindness to his own critiques such as when he relies on the constant use of antibiotics for fevers with no determined cause. He allows the proscribed treatment of the symptom with no attempt to discover the cause of the problem (52). And in the case above regarding Warlpiri mourning practices, Michaels offers no analysis of the physical as well as lexicographical erasure of the dead, what is surely on some level an object-centered discourse of tidiness that seeks, like the infectious diseases ward of the

hospital, to minimize risk, not to the dead or dying, but to the living who are purportedly

not the focus of the ritual. Are these critiques a matter, for Michaels, then, of

contextual evidence? Of simple displeasure of treatment? Of ethnographic

understanding?

The difference in these critiques is that in the Aboriginal example, Michaels

views all members of the family as participants in a cultural practice. Despite claiming

to eradicate an individual’s history, this practice instead calls attention to it, to both the

collective historical and cultural rituals of the group as well as to the specific individual

history of the deceased. The individuality of the deceased is not devalued, but instead,

in a rather circuitous way, celebrated as both discrete and part of the cultural whole.

One does not stand in for nor cancel out the other. Conversely, in the medical examples

given in Unbecoming, Michaels’ argues that tidiness gives attention to the patient’s

named disease rather than to the specific patient’s illness experience. The history of the

patient, like the history of the refurbished antiques, is wiped away, and a collective bias

117 and fear take its place at the expense of understanding. Object-centered discourses of tidiness prevail over discourses of health and illness. Tidiness blurs the details and obscures historical processes. It functions at the service of risk reduction, the risk of the healthy to become sick and of the unwelcome sick to monopolize resources. Michaels insists that tidiness is at the service of appearances rather than of health, though it may operate under the guise of ensuring the latter. Unbecoming identifies this situation as tidiness’s deepest deception as well as a major hurdle in engaging patients in their own self-care. Discourses of tidiness construct their own system of truths regarding disease and illness, those contrary to the written records of many autothanatographical subjects.

Unlike Harold Brodkey’s text, discussed in the following chapter, Michaels’ text takes on the notion that death is considered shameful, taboo, even politically embarrassing in a world in which we do everything to hide its public presence. This is partially a result of Michaels’ being almost entirely alone. With few friends in Australia, he has no one person to lean on consistently in his dying. Instead, Michaels relies on his writing to provide him the much needed support that is absent from his day-to-day existence beyond the text. Superficially, this may seem to be an odd choice of community building, as Michaels’ text can conceivably be termed a “diary” given its dated entries that proceed in chronological order but without narrative continuity.

Dairies and journals are inherently personal items intended for the writing subject’s scrutiny only, and thus Michaels’ Unbecoming fails to fit within this constraint of that

118 particular genre.45 Consequently, what makes Michaels’ account autothanatographical

“autobiography” rather than “diary” or “journal,” in the traditional sense, is his awareness of and desire for an audience, to be precise, his desire and plan to make the text public after his death (as it must be after, since he writes in it until the end of his life).

The following chapter centers on another attempt to construct autobiographical

“truth” in the face of the objectification inherent in HIV-related discourse. In This Wild

Darkness: The Story of My Death, Harold Brodkey makes clear his intention to write about his own illness in an attempt to thwart others’ accounts of his story. Rather than embrace his gay past as he argues for openness in the story, as does Michaels, Brodkey engages a narrative of conversion, one that provides distance from stigmatized sexual activity as it embraces heteronormativity—and thus one that rhetorically negates the need for tidiness practices.

45 The argument could easily be made that those few diaries and journals that have been published were always meant for the eyes of another reader. Jean-Jacques Rousseau , for instance, goes to great lengths to situate his entries within a narrative construct understandable to an outside reader. Further, he gave public readings of his text while he was living. See Sissela Bok, “Autobiography as Moral Battleground” (2000). 119

One of the troubles with the reality of the passage of time is that the past can be lied about. False precedent can be argued. Harold Brodkey, This Wild Darkness, 60

CHAPTER FOUR

The Myth of Irresistibility: Harold Brodkey’s This Wild Darkness

Harold Brodkey is irresistible. This forms the foundation of his death, this sexual

irresistibility, and, he might say, it is also the thread that binds his story together.

Harold Brodkey is irresistible, “The Fuck You Dreamed Of, Maybe,” the handsome,

beaten-down beaten-back orphan, sexy, Christ-like (This Wild Darkness 52, 53). The

obsessive revising of a never-released, always-forthcoming novel—thousands of pages

of notes filling his home-office cabinets—is just another condition of irresistibility. To be

irresistible, one first needs to be male, and, second, to be “by definition without power in the world.” Marlon Brando, Paul Newman, Harold Brodkey: the “American representation of the Good Fuck,” the irresistible “phallic martyr” (53). Brando and

Newman may have been martyrs in character onscreen, but Brodkey, of course, is a martyr in life to AIDS.

Bearing witness to such obvious mortality, such powerlessness, may be difficult for some readers. Einat Avrahami argues that “bodily manifestations and talk of physical deterioration are an unforgiveable affront to polite western society” (“Impacts of Truth” 166). Brodkey’s memoir This Wild Darkness: The Story of My Death (1996) engages a narrative of conversion—from Brodkey as seductive child to gay sexpot to enlightened (and now dying) straight married man—that encompasses and extends the

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confessional mode in order to assert Brodkey’s status as a pious, and thus undeserving,

victim of HIV/ AIDS. The conversion, that is, lessens the affront through, if not a happy

ending, then certainly an illuminated one. However, through this narrative, Brodkey

participates in the support of the homosexual-as-sinner metaphor his text attempts at

times to refute.46 Avrahami insists that through writing his autothanatography,

“Brodkey subverts the authority of the public constructions of AIDS shared by his own audience” and that Brodkey’s “personal, embodied truth of terminal illness . . . stands outside the restricting public discourses on AIDS” (167). Such power relations may indeed be altered through Brodkey’s unwillingness to hide his disease as well as his illness. He is not, after all, playing by the social rules that suggest secrecy and avoidance of stigmatization as the best course of action, rules even his doctor Barry Hartman suggests Brodkey follow, to no avail. G. Thomas Couser regards such open disclosure as a potential means of de-pathologizing illness (Smith, Reading Autobiography 261).

This Wild Darkness begins when Brodkey is first diagnosed with AIDS in 1993 and spans nearly three years, ending when Brodkey becomes too weak to continue writing.

Many of the chapters were first printed in The New Yorker over 1993–1995 against the advice of his physician, Dr. Barry Hartman, who warned Brodkey of the social dangers of

46 Whenever possible, I avoid using the terms “homosexual” and “heterosexual” in this chapter (and indeed this dissertation) because of their overtly clinical—and in the case of the word “homosexual” increasingly defamatory— implications. The issue of terminology arises in this chapter specifically because the context of Harold Brodkey’s use of the term “homosexual” as foundational to several of his points makes occasional use of the terms unavoidable. When doing so does not interfere with the context of a claim and when the word does not occur within a quotation, I have used the terms “gay sexuality,” “gay,” or “gayness” instead of “homosexual” or “homosexuality.” I have likewise substituted the term “straight” for “heterosexual” when possible. 121 disclosure. The chapters make use of both past and present tense, recording recent events and concerns and lacing these with accounts of his abusive past experiences in child- and early adulthood including sexualized abuse47 by his adoptive father and implied abuse by other relatives and friends. He links these instances of abuse to later sexual experiences with other men. The book opens with Brodkey’s outline of the details of his first trip to the hospital intensive care unit with what he thought was the flu but turns out to be an opportunistic disease called Pneumocystis pneumonia. It goes on to explain his subsequent diagnosis with HIV/AIDS, his later treatment for the disease, and his experiences with illness. The book is also peppered with Brodkey’s accounts of discussions with his wife of fifteen years Ellen Schwamm, many regarding worries of how to disclose his condition to their children and friends. Brodkey died on

January 26, 1996.

In writing This Wild Darkness, Brodkey’s subversion may be of the rules of disclosure, but it is not a subversion of “the authority of the public constructions of

AIDS” beyond the rules of disclosure, as Avrahami suggests. For if the “authority of public constructions” refers to the public view of AIDS as a deviants’ disease brought on by pathologized sexual or drug-related acts, then Brodkey’s text upholds this view, irrevocably. That is, the narrative of conversion pathologizes “homosexuality” and strikes it as “sinful,” in the lay sense, through its manipulation of the power structure inherent in such a narrative mode. The power of the narrator lies in constructing his

47 I use the term “sexualized abuse” instead of “sexual abuse” in order to denote the nature of such abuse, its sexual characteristic but foundational abuse of power dynamics. Such abuse is not founded in sexuality but in power relations. 122 story in accordance with a culturally acceptable pattern. The power structure presents

Brodkey as not wholly responsible for his ill-informed actions pre-enlightenment. And, while he must suffer the punishment of AIDS regardless, his enlightened status granted via his marriage to Ellen Schwamm allows him a measure of saving face in regard to the literary peers he so desperately wants to impress. The byproduct of this saving face, however, is that Brodkey directly aligns particular pathological and incestuous sexual acts and power with homosexuality, the past from which Brodkey has converted, in order to suggest his transformation from culpable “homosexual” to transformed heteronormative married man.

To be clear, I use “pathologize” with the definition of viewing or presenting some thing, state, or action as medically and/or psychologically abnormal. Often, the sociocultural view of a behavior or action will make its way into medical literature, for example, into the Diagnostic and Statistical Manual of Mental Disorders. The pathologization of depression is one example of the process in which lay concerns are assumed by medical practitioners and subsequently presented as disease, or pathology.

Pre-menstrual syndrome, or PMS, is another, more recent example. In these two examples, real and discrete symptoms have been grouped together as a requirement for labeling, the authentication of the existence of a condition (e.g., “depression”). To clarify, rather than a series of individual symptoms that need no other qualifications to exist, named diseases have grouped symptoms as requirements for diagnosis. If one’s symptoms fall outside of meeting these requirements—in number, duration, and/or name—one does not have the named condition. I do not suggest that these conditions

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are in any way “made up” or not actual, or that those who have these conditions and

suffer from their affects are undeserving of treatment. I argue only that social concern in these cases brings about medical concern and classification as disease, rather than the other way around. Homosexuality has a history of medical pathologization taken initially from sociocultural, or non-medical, views of the “abnormality” of non- heterosexuality. This pathologization has in turn been embraced and presented in various ways in public discourses of sexuality, often as a paraphilia closely associated with child molestation.48

Anne Hunsaker Hawkins argues that stories of illness have replaced

autobiographical religious stories in which a “sinner” recognizes God, repents, and goes

on to live a God-fearing existence (“A Change of Heart”). Such stories rely on the

concept of conversion, what Sidonie Smith notes is a “narrative mode . . . structured

around a radical transformation from a faulty ‘before’ self to an enlightened ‘after’ self”

(Reading Autobiography 192). Arthur W. Frank, like Hawkins, favors the narrative of conversion in stories of illness, suggesting that “The decisive moment—call it the epiphany—of many illness narratives is when authors realize that they have spent their lives coping, and only as a result of being ill, do they grasp life’s greater significance in all its joy and plight” (“Five Dramas of Illness” 381). Smith gives further credence to the applicability of the conversion narrative to topics other than religion, noting that this narrative mode also supplies the narrative structuring principle in such various texts as

48 This view is still a topic of current concern. As I write this chapter, Vatican Secretary of State Cardinal Tarcisio Bertone has made yet another declaration that “homosexuality” is a “pathology” linked directly to pedophilia (Simon Gardener, “Priest Pedophilia Not Linked to Celibacy: Pope’s No. 2”). Of course, Save the Family has been arguing this for as long as the organization has existed. 124

Frederick Douglass’s Narrative of the Life of Frederick Douglass, an American Slave,

Malcolm X’s Autobiography of Malcolm X, and even Alcoholics Anonymous stories.

What both Hawkins and Smith refer to overall is the ability of a narrator to construct his own story in terms of a culturally acceptable pattern. This pattern is of chronological organization that contains reference to a past from which the author has learned a foundationally transformative lesson, one that has subsequently altered his behavior or views in the present. Most often this is an intellectual or spiritual revelation, though, as

Frank notes above, the process can be brought about through bodily experience.

Brodkey’s use of the conversion narrative is based on established sociomedical conceptions of gayness—of “homosexuality”—as comprised of deviant behaviors and desires that merit negative outcomes such as infection with disease. Such use also demonstrates Brodkey’s attempt to make sense of his currently shifting physical awareness, one that prompts a feeling of ongoing uncertainty in the present and for the future. In order to make narrative sense of his present experience, Brodkey thus recalls past events that he identifies as providing a reasonable explanation for his current illness and resultant sense of disembodiment. The trajectory of conversion in This Wild

Darkness can be summarized as coincident with Brodkey’s pathologization of homosexuality, as follows:

1. Brodkey notes that he is physically “irresistible” as a child, and this

irresistibility follows him through adolescence and into adulthood,

attached to sexuality.

2. His irresistibility leads his adoptive father to molest him sexually

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when Brodkey is a young teenager.

3. This molestation leads Brodkey to “experiment” with gay sex in order

to understand his “relationship” with his adoptive father.

4. He realizes the error of his ways and abandons homosexuality for

heterosexuality.

5. Brodkey’s past sexual encounters with men lead to his contraction of

HIV and inevitable death from AIDS.

6. He rhetorically positions heterosexuality as a departure from his

previous improper and false (and merely sexual) relationships with

men.

In a direct link of his childhood sexualized abuse and refusal to permit this abuse beyond two years duration—or, as Brodkey calls the abuse, his adoptive father’s “feelings”

(61)—and his later dying of AIDS, Brodkey laments, “He accursed me. Now I will die

disfigured and in pain” (61). “In real life,” he writes, “I experimented with

homosexuality to break my pride, to open myself to the story” of his relationship with

his adoptive father, Joe Brodkey (61). Brodkey’s experiences with his father’s abuse and

his subsequent ending of that abuse, as though he were in complete control the entire

time, effects Brodkey’s guilt both as a child, for stopping the abuse, and as an adult, for

letting it continue as long as it did. Further, it suggests that Brodkey’s experiences as a

child have directly resulted in his contraction of HIV and impending death from AIDS.

Brodkey attempts to string these events together into narrative cause-effect

relationships, regardless of these events’ actual connections. Brodkey contends that in

126 the production of narrative associations, “False precedent can be argued” (60). Without asserting outright that his association of childhood abuse and gay sex is false, Brodkey at least calls into question the verity of this cause-effect relationship. In linking the two sets of events in his autothanatography, Brodkey self-edits his own life history. Such linking demonstrates his internalization of the discursive sociomedical strategies of homosexual demonization, which leads, in This Wild Darkness, to a direct shaping of the text through internalized, rather than externalized, sociomedical negotiations.

Because he notes that his present illness is contingent upon acts he considers culturally deviant, his text must also disparage those acts in order to demonstrate and emphasize, before he dies, Brodkey’s enlightened position. This position is one that paradoxically attempts to both refute and accept blame through a re-editorializing of experience. First, it attempts to accept and even perpetuate Brodkey’s personal blame for the faultless crime of “irresistibility,” the temptation that leads the child and, later, the young man astray until he can claim a more sophisticated sensibility. The second is the attempt to release Brodkey from cultural blame by arguing that his early molestation, for which cultural (and legal) blame is placed on the abuser, is the cause of his sexual relations with other men.

Brodkey’s so-called switch from a gay to a straight identity is one that he locates internally. This choice bears no reflection on his external self, as related in the text, until the medical manifestation of his virus externalizes the reality of this turn, as well as its incompleteness. If one takes for a moment, as Brodkey seems to do, that HIV/AIDS is a “homosexual disease,” this turn is, and will remain until death, incomplete. The

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external signs of the virus, in other words, its visible presentation through disease

markers to those outside the self, thwarts Brodkey’s attempt at removing himself from a

gay past. Certainly a complication regarding his self-identity, the visible physical

markers of HIV/AIDS underscore the troubling relationship between Brodkey’s past and

present identities. For instance, the gay body before the contraction of HIV/AIDS is one

that problematizes the relationship between signifier and signified, for, as Eric

Waggoner remarks, “‘the homosexual’ bears the markers of that which looks like one

thing, but is essentially, entirely (an)other” (176). The present outward manifestation of

the virus in the form of its accompanying opportunistic diseases publically negates this

problematization, instead effectively marking the male individual as one who has

engaged in homosexual activities—even further, homosexual activities of a particular

sort, given the virus’s supposed pathways of transmission.49 Assuming that there is as

Lee Edelman asserts a “need to construe . . . an emblem of homosexual difference [from heterosexuality] that will securely situate the difference within the register of visibility”

(Homographesis 11), the external marks of HIV/AIDS fits that bill for a large portion of the Western population.

One way that autothanatographers have sought to reconcile the tensions

between pressing forward and the tangible limitations of terminal illness is by entering a

dialogue with their contemporaries. Issues of community and the critical tensions

49 I offer this statement in the full knowledge that HIV/AIDS is not a “homosexual disease” and is transmitted through various means that both include and do not include sexual relations, let alone M2M sexual relations. However, at the time of writing This Wild Darkness, and today, gay men and men “on the down low” are still sociomedically understood in America as the most at-risk for contracting and disseminating the virus. For a fuller account of both public and medical conceptions of at-risk groups, the restrictions placed upon them, and the rationales behind these categorizations and restrictions, please consult Alex Preda, AIDS, Rhetoric, and Medical Knowledge (2005). 128 inherent in a discussion of communities in regard to their inclusionary/exclusionary practices underscore much of Eric Michaels’ Unbecoming and David Wojnarowicz’s

Close to the Knives, as well, though these are tensions of a different sort than that found in Brodkey’s text. Often, Brodkey enters this dialogue by way of difference through asserting his current (married) heterosexuality and by refuting the viability of the

Brodkey existent before his marriage. And yet, his struggle to come to terms with his terminal condition and the same-sex encounters that likely gave him HIV/AIDS is always there. Significantly, because of the trajectory of Brodkey’s shifting sexual orientation, he has trouble locating a consistent community of “contemporaries” initially. On the one hand, finding a community of HIV/AIDS sufferers in the late 1980s and early 1990s more often than not meant that these contemporaries were men who engaged in same- sex sexual activities (which Brodkey is and did) or intravenous drug-users (of which

Brodkey makes no mention). And on the other, Brodkey appears to want no part of this specific community. His is a particularly difficult situation: he wants badly to assert his identity, yet his body asserts for him the identity of the HIV/AIDS patient, again, an identity that is culturally ingrained in the United States even today as gay. One telling example of Brodkey’s struggle with the notion of selfhood occurs early in the text and serves as a grounding mechanism for the rest of the narrative:

I felt that if I had AIDS, she [his wife Ellen Schwamm] had the right,

perhaps the duty, to leave me; my having the disease suspended all

contracts and emotions—it was beyond sacrament and marriage. It

represented a new state, in which, in a sense, we did not exist. What we

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were had been dissolved, as if by radiation or the action of an acid.

Perhaps the sacrament remained, but it was between her and her beliefs

now; care wasn’t, in my view, owed to me anymore. I wasn’t me, for one

thing. And she had suffered enough. (15–16)

This Harold Brodkey is the Brodkey that fails to exist in his heterosexual marriage, the one that refutes, as perhaps one must, the sexual body that brought about the disease that he believes will surely kill him, and does. There is, of course, no chance of an easy death with AIDS. Brodkey’s assertion that “I wasn’t me”—was not the heterosexual, pre-illness, married Brodkey—is thus telling on the individual level, in terms of embodied experience, as well as on the wider social level. Brodkey’s textual self-editing leads him to shape his conceptions of selfhood and embodiment into this position of non-existence.

On the individual level, this passage speaks, of course, of the rending of the physical self from the conceptual self, the tangible from intangible. As Elaine Scarry aptly observes in The Body in Pain, the “body tends to be brought forward…when there is a crisis of substantiation” (127). The representation of “a new state, in which, in a sense, we did not exist” may be effectively read in terms of the narrowing effect that terminal illness has on the sufferer, recalling Suzanna Egan’s argument that “Terminal illness, finally, posits the primacy of experience to subsequent understanding” (Mirror

Talk 197). Brodkey implies that illness erases so much of his life as to contract it to the singular perspective, the one focused on his terminal condition without understanding it, his body dissolved to disease. His vision of the world collapses into one inward-facing

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and yet not exactly introspective lens. This lens is focused not on Brodkey as he has

come to know and recognize himself—for he is not “me” anymore—but on the physical

limitations of his terminally ill body and what those limitations represent in terms of

social contract. In this sense, the disease’s “suspend[ing] all contracts and emotions”

works to undermine Brodkey's sense of himself as a viable participant in marital and

worldly discourse. Here, too, Brodkey adopts the conception of the social contract of

marriage as one unavailable to the sexualized (and subsequently diseased) gay body.

Understandably, Brodkey’s assertion that he and his wife as a combined “we” do not

exist reflects his inability to view himself as capable of participating in the “we” of his

(heterosexual) marriage. Participation in marriage requires a meaning-making of which he perceives he is now incapable, of one that centers outside of his own body by which he feels trapped and defined, one that harbors a stigmatized disease. Marriage, by

Brodkey’s definition, is a heteronormative union that excludes any association with past gay identity. His bodily state is a reminder of that association.

Autothanatography is open to navigating the despairs of the author’s body. The terminally ill person’s struggle to recognize and accept a new physical self, one limited by the constraints and afflictions of disease, is standard fare for much of the genre.

What is more interesting—significantly so—in Brodkey’s text is that this navigation includes, indeed bases itself on the communal aspect he finds in refuting a conceivably gay identity in favor of a socially accepted straight, married persona. Reading the above quotation in the light of such anxiety produces a wholly new reading, one of self-blame

in which Brodkey articulates his seemingly misguided gay sexual relations as in

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opposition to the productive life he has lived with his wife. His statement “we did not

exist” is thus reliant on a backtracking to a previous gay identity, the one that, he later

notes, caused him to contract HIV (143). In further speaking of his marriage and his

marital participation, Brodkey comments that “this disease makes an even greater

mockery of everything one was before—mentally and physically, socially and erotically,

emotionally and politically” (162). By “before,” it is implicit that Brodkey means both in

the context of his work as well as while married. Again, his conception of HIV/AIDS

reads as of a disease that does not occur within the protective confines of his straight

relationships and thus has no place in them. If his body has decided for him to revert

back to a physical “gay” identity (and that is how he frames his conception of the

situation), that is, to an identity that is directly connected with his having the disease, then his marriage, his life as he has lived it in the preceding fifteen years, is no longer accurate: the disease has “suspended all contracts…it [is] beyond sacrament and marriage.” This passage suggests that Brodkey at the outset views HIV/AIDS as the dissolution of not only his physical, emotional, mental, and even medical identities, but of his social and sacred identities, as well. There is no sacrament left to the body dying of AIDS, in Brodkey’s terms. He loses agency to his illness and to his former subjectivity.

And for him, this body, at least for a time, revels in the temporal and physical disjunction it experiences while in its solitary mental march back to contraction of the disease that will, and does, kill him.

In “AIDS: Cultural Analysis/Cultural Activism,” the art critic and HIV/AIDS activist

Douglas Crimp insists rightly that AIDS is a social phenomenon and thus relies on social

132 actualization. It “does not exist apart from the practices that conceptualize it, represent it, respond to it,” Crimp writes, “We know AIDS only in and through these practices” (3).

Brodkey’s text asserts his breaking away from his childhood sexualized abuse and what he suggests is his directly related past gay identity. The text places the origin of

Brodkey’s terminal disease within this identity, and his text thus may be read in terms of a larger social rejection of gay male identity. Other AIDS-related autothanatographies embrace this sense of fraternity or sorority, a theme that Brodkey rejects, and others envision it as a space in which to find, if not solace, then a particular sort of grim solidarity in the growing numbers of those afflicted. David Wojnarowicz, whom I discuss in the following chapter, not only finds solace with his contemporaries, but also takes on their stories and incorporates them as inextricable from his own autothanatography. I do not make the judgment that either is a “correct” or “incorrect” response in terms of

AIDS-related autothanatographical discourse (and in terms of genre marking it hardly matters in what community one seeks assistance or alliance); only that of the three

HIV/AIDS-related texts under consideration in this dissertation, Brodkey’s is unique in its harsh gay self-blame.

This is, too, a blame that manifests and is articulated because the disease reminds Brodkey of a previous life that he seemingly longs to leave behind in order to fit within the confines of his heteronormative and socially sanctioned marriage. Sex is dangerous, according to Brodkey. And, notes Edelman, “the homosexual subject is represented as being, even more than inhabiting, a body that always demands to be read, a body on which his ‘sexuality’ is always already inscribed” (10). Brodkey adopts

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Edelman’s stance, as the identity and disintegration of Brodkey’s body is one that he ties

irrevocably to his sexual conduct. For Brodkey, his sexual and diseased bodies are

indistinguishable; in his adoption of sociomedical discourses of HIV/AIDS and disease

contraction, he further implies that the sexual body has produced the diseased body. In

a particularly moving illustration of despair and rumination on the harsh reality of bodily

illness, Brodkey comments that “I am stronger for the moment, which is maddening,

since it means I am only stronger for the moment” (144). Brodkey’s sense of identity is

controlled by his unstable body-self, one that influences a sense of personal trajectory

and prompts, as Brodkey’s lamentation shows, disillusionment with the continuity of

selfhood.

In much autothanatography, the present diseased body is disconnected from

one’s previous sense of self, the “self before illness,” and thus the historicity of that

“before-self” becomes strikingly less relevant in autothanatography except in terms of

comparison to the present, diseased body. When spoken of, it is hence regularly framed

as if it were the unobtainable and desirable body-self of another person. Emily Shore’s

journals frequently speak in fond terms of Shore’s bodily abilities before her illness. In

Brodkey’s case, however, there are two “selves before illness”: his most recent persona, that of a loving, married, and successful man with no reason to fear HIV/AIDS; and his past persona, that of a sexually promiscuous man who engaged in sex with other men, the “anal diddling” (28) that he suggests is entirely devoid of any feelings or intents

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other than sexual.50 As the text opens, Brodkey does, indeed, feel alienated from his

recent self, the self he suggests is the viable “Brodkey.” Instead, he identifies

problematically with his past and, in his view, flawed self, the past self he has, until now,

successfully left behind him in his pursuits as a married man reliant, at least in terms of

his public and social presentation, on his wife, whom he calls his “human credential” (8).

This dramatic and sudden corporeal alteration is brought about by the outward

manifestation of disease and the newly named experience of illness. Brodkey’s text

implies that this alteration moves Brodkey conceptually from his recent to his past self,

a move that prompts a deep disgust evident in the way he describes his now-obviously

diseased body.

Brodkey’s own experience of his sick body, his “flesh,” is one he links

metaphorically with that of a frightened and crippled rabbit. This linkage demonstrates

again Brodkey’s internalization of the sociomedical editorial voice: diseased flesh is

repugnant. This rabbit is one that he doesn’t “want to pet, that [he forgets] to feed on

time, that [he hasn’t] time to play with and get to know, a useless rabbit kept in a cage

that it would be cruel to turn loose. It doesn’t have a prayer for survival. Or any chance

of an easy death. It is mere half-eaten prey” (30). He has now, he declares, “the

strangest imaginable tie to my own flesh” (30). This description of his body as “flesh”

coupled with the imagery of the rabbit poses Brodkey as an animal of prey. The self-

imposed physical alienation is obvious: he views himself as less than human. Notably

50 I will refer to the former as Brodkey’s “recent” self and the latter as Brodkey’s “past” self for ease of discussion, as well as to avoid the terms “heterosexual” and “homosexual” self, as these are, in my view, not particularly accurate. The homophobia inherent in Brodkey’s statement surely requires no glossing. 135

these assertions come only after medical diagnosis, after the knowledge that his illness

is terminal, is AIDS, and that he has the hope, according to his doctor Barry, of only a

few “good” years at best (87). These ruminations are not, then, a sole result of his

feelings of being sick but of the experience of illness coupled with the knowledge that

his disease is going to kill him, that it is medically named as “terminal.”

Autothanatographical writing is a means through which one explores the

unresolved crisis that is terminal illness, to understand its impact on one’s conception of

one’s own life in death. It is a story of fragmentation. Brodkey’s own assertion that his

“body” is now “flesh,” distanced in terminology if not in physical reality, demonstrates

the disorientation he experiences in relation to his now unreliable physical self.

Correspondingly, his near abjection is one that reduces his physical being to “half-eaten

prey,” to a state outside of himself, uncontrollable and at the mercy of something

larger, something, notably, carnivorous and in the process of consumption. This

phrasing is reminiscent of the toxic pawing adults in his childhood: “I could just eat you

up” (54). He is being eaten alive in the very act of his bifurcation, of his splitting himself

into a self that tends the body but that is separate from it, a changing physical self that he nonetheless claims with no small amount of disgust as his own. His text, then, speaks to the attempt to understand the occasion of the split and its resultant consequences; his phrasing suggests once again his internalization of the sociomedicalized view of the diseased body.

Here, as well, Brodkey identifies, as he does at key moments throughout the text, the lack of pleasure that he takes in his body currently, and the lack of self-care

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that led him to the state of being consumed by disease and of being personified in the

form of the half-eaten—but still living—rabbit. More than simply not wanting to “pet”

the rabbit, that is, not wanting to take humane and comforting care of his body, this lack

of care began the downward spiral of his corporeal self with which he now has the

“strangest imaginable tie.” Brodkey speaks of his body as little known territory. It is

one that he doesn’t have “time to play with and get to know,” a “useless” self that has

turned its faculties against him and offers him no chance of survival, a traitor. And yet,

uncharacteristically for autothanatographical writing, he often aligns his current body

with a previous physical and social self before disease, the arguably gay self (the

Brodkey that engaged in same-sex sexual activities) that he dares not “turn loose.”

Though he never specifies what danger the body would wreak, and on whom, if turned loose, the implication is that it is the body and not the disease that is dangerous, an argument which parallels Eric Michaels’ theory of the discourse of tidiness which itself displaces the danger of disease onto the body. Sex, Brodkey comments wryly, “is unwise: look at me. The foolish nature of sexual love is there in front of you, always”

(29). The pursuit and ramifications of sexual love form a substantial part of Brodkey’s text (others’ sexual love as well as his own), and they provide the narrative thread to his

dying.

Brodkey’s present writing self does not find its counterpart in his recent self, in

the person that was Harold Brodkey in the years immediately before diagnosis. Rather,

he connects his current struggles with AIDS to a time before he married his wife some

fifteen years prior to the start date of the text. It is a slippery slope, one that negatively

137 implicates “homosexual behavior” and gay bodies in the ravages of disease, an implication in which the text is more than willing to participate.

The self-conceptual boundary Brodkey has constructed between his gay and straight lives is made permeable by the visible signs of disease, and as a result Brodkey feels that he can no longer “pass” among strangers as a man who is now and always was straight. By its nature, autothanatography, like other forms of autobiographical writing, is personal and individual; it additionally reflects one’s intimate struggles with disease and illness and the resulting shifting sense of bodily identity and control. And yet if one takes into consideration Derek Duncan’s assertion that “Like the autobiographical act itself, the body is a social site,” that “Writing autobiography thus becomes a vehicle for cultural criticism rather than self-validation” (23), Brodkey’s metaphor of the wounded and neglected rabbit takes on a complicated meaning-making made all the more slippery by his heteronormative text. One wonders exactly how Brodkey would “turn loose” the body-self against which he struggles to find meaning beyond his present crisis, and what it would mean for him to do so. This Wild Darkness is Brodkey’s navigating a story of illness that is problematized by the stigmatizing sociomedical discourses he has internalized and through which he writes.

Brodkey’s experience with “the nature of sexual love” is one that begins in early childhood through his adoptive father’s sexualized abuse. In searching for a narrative thread to contextualize his story, Brodkey adopts the concept that sexualized abuse as a child leads to deviant sexual behavior as an adult; as a result, these abusive encounters shape his expressions of all subsequent relationships discussed in the text. This abuse is

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nearly always relayed in This Wild Darkness proximate to statements of Brodkey’s perceived physical desirability. “It is fantastically embarrassing to say,” he writes, “that I was adopted illegally and with great difficulty, and the difficulty was accepted because of the infant’s, the very young child’s—the tales agree even if the photographs don’t— extreme beauty” (54). He follows this revelation with another and still another, each equally concerned with desirability. But these subsequent revelations contain an edge of violence that reflects the lengths to which people would go in order to lay some claim to him: “In my childhood, people talked a great deal about me and quarreled over me— and threatened force. And there was violence, some of it directed at me”; “Either of my parents would have killed the other for me” (54, 59). The implication, of course, is that young Brodkey produces these violent, not actions, but re-actions in those around him.

In reacting to his irresistibility, they simply cannot help themselves.

Brodkey’s assumption of the rhetoric of abuse—the rhetoric that positions the child as participant and, perhaps, even antagonist of such abuse—positions these others as helpless in the face of Brodkey’s desirability. The discursive result is the diffusion of responsibility and the transfer of some degree of responsibility onto Brodkey, thereby pathologizing his “irresistibility” that itself effects taboo activity. Brodkey constructs this dynamic, textually misrepresenting the power structures of sexualized and abusive child relationships, to suggest that the child holds influence over the adults in such a way as to present purportedly meek people as capable of great violence, all for their love of him. Brodkey textually constructs this transference of power from his abusers to, in reality, a disempowered and abused child Brodkey. In empowering himself as a child, he

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thus empowers the aged authorial Brodkey now “filthy with AIDS” (This Wild 118). In

short, Brodkey must depict his young self as having some agency in order to avoid

disenfranchising his past and thus his recent selves. To do so would further jeopardize

his assertions of conversion, as he must refute the actions of an empowered and

dynamic self in order to assert his current enlightenment.

The following related passage provides a microcosm in which is contained not

only Brodkey’s understanding of connections between childhood power and

pathologized sexual relationships, but also the relationships between his own childhood

experiences with sexualized abuse and his later male-to-male sexual activities and

subsequent contraction of HIV:

I have seen, as an adult, children of such attention become quite violent

themselves, and hysterical, and strange. I think of childhood and

adolescence as sexual, as filled with the sexual intrusion of others. I was

told that Doris Brodkey first tried to buy me from my real mother when I

was a year old. I would suspect that the fate of irresistibility in the

ordinary world is established in infancy as a condition of existence for

most of us. But that in my case has also partly determined my death.

(54–55)

Brodkey makes no explicit reference to himself in the first sentence of the passage, but it is easy to draw the connections to his own childhood behavior, especially since he otherwise refers to himself as not wanting to be touched, or hysterical (55). Brodkey’s transference of violent and pathological behavior onto children in general denotes his

140 view of children’s internalization of such behavior, and of his own. Perhaps, too, this inclusion of other children is meant as a marker of Brodkey’s not wanting to appear overly self-centered or self-aggrandizing in his statements of “extreme beauty” (though that other extreme—manic ego—is there throughout the text). There is the suggestion of irresistibility being borne out in childhood as a condition of existence “in the ordinary world”; however, nowhere else in the text does Brodkey include the ordinary world in his remarks regarding this particular quality that so imbued with menace his childhood and adolescence.

In fact, the text turns immediately to what is a direct reference to Brodkey’s own childhood, one filled with the abusive attentions of his adoptive father, or “the sexual intrusion of others.” Brodkey makes clear that his adoptive father abused him twice a day everyday for two years when Brodkey was twelve and thirteen (58). This declaration is essential to an understanding of Brodkey’s text. Throughout the passage quoted above, Brodkey places responsibility and blame onto and thus pathologizes the child victims of adult sexual attention through representing them in two contradictory ways: as passive objects, unwilling or unable to resist unwanted attentions, and at the same time as compliant or willing participants in pathologized behavior. This contradiction is typical of the sociomedical language of sexualized assault (Coates,

“Language and Violence” 516). Brodkey’s strategic positioning of the abused child demonstrates how deeply he has internalized the sociomedical discourses he uses to manufacture the narrative connections within his story. The process of writing becomes the path to enlightenment.

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In the context of these statements, if young childhood and adolescence are

“sexual,” as they may be, in fact, then according to Brodkey’s rhetoric the child is a sexual being who is by default a participant in these sexual encounters. I mean to emphasize how Brodkey’s text uses a trajectory of power relations that implicates the child-Brodkey and the abuse he suffered to the adult-Brodkey and the sexual relations in which he willingly engaged. “In real life,” he says, “I experimented with homosexuality to break my pride, to open myself to the story” about “me and my father” (This Wild

61), the story of his sexualized abuse by an adult male. The remark that Doris tries to buy Brodkey first when he is a year old (just as Brodkey’s birthmother is falling ill with infection) follows immediately from the previous statements of “sexual intrusion.” It gives further credence to the suggestion that Brodkey is either speaking directly of himself in the previous sentences or that the sentiments therein recall for him some measure of his own childhood experiences and feelings of sexual intrusion. Doris

Brodkey’s attempted purchase of the one-year-old Brodkey is clearly a facet of the family lore surrounding Brodkey’s adoption, one placed in a pseudo-positive light given the child’s supposed beauty and desirability. The mention of purchase also suggests not only a willing complicity on the part of his adoptive mother, but an eagerness to obtain

Brodkey for a male’s sexual means (here his adoptive father). Significantly, Brodkey writes of himself as an object to be bought. Such a statement functions rhetorically as justification for sexually abusive intrusions brought about by his “fate of irresistibility.”

The final two sentences of the passage quoted above provide the bridge between Brodkey’s childhood sexuality and sexualized abuse and his adult sexual

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relationships. Brodkey’s irresistibility, by his definition firmly established in childhood,

has determined his “condition of existence” as an adult, now a condition that the

authorial Brodkey has to overcome in order to fulfill his conversion from his childhood

and past selves to his present enlightened (and not irresistible) self. Brodkey has

accepted that he is infected with a fatal disease and will soon die, the half-eaten rabbit.

The fate of irresistibility that began when Brodkey was a baby is carried through to

adulthood and into his adult sexuality, which has “partly determined [his] death.”

Young Brodkey’s irresistibility is powerful enough to prompt others to transgress important sociocultural and familial boundaries. Assertions of one’s overpowering desirability are common in childhood recollections of sexualized abuse and incest, maintains psychologist Diana E. H. Russell. Through the projection of the abuser’s sexual feelings onto the child, the child comes to internalize the abuser’s rationalization of the abuse, of the child-as-seducer. Brodkey subscribes to this notion of child(Brodkey)-as-seducer. He emphasizes it in the passage quoted above and at multiple points in the text. Such assaults during his adolescence, he argues, “occurred everywhere, as if by contagion—with the football guys, with old friends, with the mothers of friends, with strangers. I was even half-abducted once, forced into a car, but

I fought and talked my way out of it” (This Wild 60). Assertions such as this one position

Brodkey as both powerless and powerful. He is powerful enough to prompt a response, powerless to control the initial abusive response of his abusers, and then powerful enough to direct the response once it occurs. This issue of power exchange is the

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strange teeter-totter of Brodkey’s PWA51 existence, as a half-abandoned half-abducted child and, later, adult; as a sexually confused individual; and as a PWA struggling with a half-owned half-disowned body; as a half-eaten animal: “I am Death,” Brodkey says,

“Death and Punishment-for-Sin” (102).52

The temptation offered to and by the child is contextualized by Brodkey’s not

moving to halt Joe Brodkey’s incestuous sexualized abuse until two years had passed.

When he finally does tell his father to stop, and we are led to believe that this is the first

and only time Brodkey voices refusal, the abuse stops immediately, giving Brodkey a

sense of ownership regarding the activities which occurred. But there are drastic

consequences to his assertions:

Then, I killed Joe Brodkey. But I didn’t know—scientifically—it would kill

him to talk with intelligence and finality. I stood up and leaned against

the bureau and he lay on my bed, and I said that he would not touch me

anymore at all, not even a handshake, unless he behaved. . . . He turned

his face to the wall, telling me I was a cold fish—because I would not sex

around with him. He was lecherous and strange. (141)

Joe Brodkey is “strange,” like the desirable, sexualized children who are the objects of such adoration and, Brodkey will later say, “love”: “I had to notice that he was heartsick—with feeling, clearly in love, in a way” (58). Importantly, he refers more than

51 Person with AIDS. Eric Michaels uses this moniker throughout Unbecoming. As noted in chapter three, the designation “person with AIDS” or “PWA” is a cultural attempt at reclaiming personhood through emphasizing the person with the disease rather than the disease itself.

52 Characteristically, this “sin” has no stated religious component in This Wild Darkness, only a joint bodily and sexual one. 144

once to adult-male sexualized assault as “love”—with different, complicated meanings

throughout the text. Still, at least in retrospect, Brodkey determines the terms of his

engagement with his father and suggests that he has always had control of the situation

and was thus an active participant. He is able to make the abuse stop with a single

statement, if only because of his intelligence and ability to enforce finality. The text

implies that he was simply too nice, too giving a boy—“‘a young man with a good smile’”

(59)—to thwart his father’s advances prior to this occasion. Brodkey’s assertion that he experiments with homosexuality as an adult in order to understand his relationship with

Joe Brodkey, to “break [it] open,” marks his pathologization of behavior, an assertion that he was a child participant. He wants to understand his abuse, as well as to understand himself, through engaging in sex with other men. I have previously noted the tendency of abused children to accept some responsibility for their abuser’s actions, but it bears further emphasizing. Brodkey internalizes the discourse of the abuser and through it self-edits the story of his past actions—he reads his same-sex sexual acts

through the discourse of the abuser—in order to contextualize his current illness

experiences. Such discourse of the abuser is parallel to the sociomedical

pathologization of homosexuality.

The additional implication of Brodkey’s argument, of course, is that this

experiment has Brodkey engaging in activities just like those in which he engaged with

his father, that the two—sexualized abuse and gay sex acts—are, for Brodkey, the same,

or at least similar enough to make such a direct link. Psychologists have made claims

that male children who are sexually abused by other males may become confused with

145 their own sexual identities, turning to homosexuality or developing “a preference” for gay sexual relations (Dimock; Beitchman, et al; Wilson and Widom). In order to understand the violence perpetrated against them as children, an abused male may

“place himself at risk to taking part in further homosexual activity” (Dhaliwal 632). It is worth noting that this argument, and the phrasing used to put it forth—“place himself at risk,” “further homosexual activity”—is itself a direct linking of male-on-male childhood sexualized abuse with being gay, the perceived “homosexuality” of both the abuser and the abused. Other studies have found no link between child sexualized abuse and gay sexuality, and several psychologists argue that the very studies that do locate such a link do not account for the possibility that the abused children may have already had a propensity toward gayness before the abuse occurred (Bell, Weinberg, and Hammersmith; Gilgun and Reiser; Hunter). Whether or not there is a scientific link between the two, the significance in the context of Brodkey’s assertions is that he is internalizing the discourse of numerous scientific and sociocultural linkages, no matter how faulty, of childhood sexualized abuse and adult gay sexual activity. Brodkey adopts this assertion and uses it to tie together the dissociated parts of his autothanatography into a perceivable narrative arc and, one might assume, to fulfill his own need for explanation. Incestuous abuse is depicted as sexual relations within a pathologized power structure/struggle in which Brodkey is himself pathologically involved. In short, he figures himself an agent as well as a victim.

The pathologization of homosexuality extends to other textual expressions of blatant homophobia in This Wild Darkness, often disguised in terms of self-admiration:

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I was in fashion in New York in terms of this irresistibility off and on for

the last forty years. And it was an insiderish thing to be “in love” with me

at those times. Other people won literary prizes or academic honors. I

discriminated among emotions and suitors—and judged their quality as

people, their odors, their intelligence, their powers of comedy and of

being thrilling, their emotional intelligence. I had always, explosively, a

kind of emotional citizenship, an undeserved welcome. I felt this absurd

irresistibility as a form of comedy. I am trying to describe the nature of

the temptation offered to the child and by the child, then the adolescent,

then the young man in New York who is now the aging man with AIDS.

Another man might “love” me like someone cheating at croquet,

but the croquet court laid out in me, a pleasure ground of a peculiar sort.

(57)

Brodkey never outright addresses the subject of homophobia, even in discussions of stigma, or how his text may add to or subtract from homophobic statements already made toward PWAs. However, the text perpetuates a sense of Brodkey’s own homophobia through recurring examples of “‘love’” from other men, love which presents Brodkey as both object and subject simultaneously, but always in the context of a game. Brodkey likens the attentions paid to him by other men to playing a game by unofficial or illegal (in any case not sanctioned) rules, a cheater’s endeavor.

Furthermore, the field on which the game is played is contained within Brodkey, objectifying his body as a place in which others might enact their desires. Similarly, after

147 a description of his abuse by his adoptive father dying of “heart trouble,” Brodkey notes,

“I had to notice that he was heartsick—with feeling, clearly in love, in a way” (58). Even here he refers to adult-male sexualized assault as “love”—with a similar, complicated meaning. Brodkey’s self-objectification is a claiming of corporeal presence for the sake of another’s pleasure. He calls both the childhood sexualized abuse and the adult sexual attentions of other men “‘love’” with the same obvious disdain, yet another connective fiber between them. In this connection, Brodkey clearly reveals the depth to which he has internalized ideations of same-sex love as inauthentic, as sexual predation masked as a love that is impossible unless between individuals of the opposite sex. The meshing of agency and victimization characteristic to language of abuse(rs) is apparent in the quoted passage, as well, as the language Brodkey uses suggests the strange and simultaneous power and powerlessness of the abused child. It also outlines a recurring dichotomy indicative of how Brodkey understands the simultaneous power and powerlessness he feels as his body ebbs away into death. He discriminates, and he judges others, and yet he has what he feels is an “undeserved” welcome in New York

City’s sexual literary world. Brodkey argues for this specifically undeserved welcome, perhaps because in looking back and constructing his story, he positions himself as a cynical performer engaged in the ruse of gay sexuality, which, according to Brodkey, is devoid of the possibility of “real” love with genuine participants.

The temptation offered to and by the child, then adolescent, then young man who is now—at the time of writing—the aging man with AIDS (and no longer a participant in temptation) is to allow an approach of the unwanted other, to choose

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among suitors who desire, against the rules, his attention. The temptation offered to

and by the child-then-adult is, simply, irresistibility. Brodkey speaks of himself as an

object, then gives the object subjective abilities: he is “in fashion” as though a collector’s

piece or prize, but he is able to choose as though a subject. Once again, he conflates the

objectivity of the abused child with the subjectivity of the abuser. Brodkey fancies

himself ever the cynical seducer. Speaking of the two men he lived with, he says later in

the text, “I would fuck them occasionally, usually one by one, and do ‘romantic’ things”

(143). As when he writes of scenes of abuse, Brodkey decontextualizes situational

details and rewrites them suited to his own declarations of irresistibility, these, too,

filtered through the same internalized arguments of justifications of abuse. Brodkey the

author textually implies that not only can young Brodkey take control of sexualized

situations, but adult Brodkey has also learned to master his irresistibility such that he

need do sexual favors only infrequently and with a degree of flippant dismissal. Such

links between childhood and adult interactions and the inscription of blame and behavioral pathology color the textual relation of each of Brodkey’s sexual experiences,

that is, Brodkey textually forces their connections in order to narrativize his illness

experience.

During his lifetime, Brodkey published numerous stories in The New Yorker, most

of which were collected in his two books of short stories, First Love and Other Sorrows

(1958) and Stories in an Almost Classical Mode (1988). Brodkey also published two novels, The Runaway Soul (1991) and Profane Friendship (1994), as well as a book of

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stories and miscellanea titled Women and Angels (1985). After Brodkey’s death from

complications of AIDS in 1996, three additional books were published, two of nonfiction

and another of short stories. Many of Brodkey’s novels and short story collections have

received sustained attention by critics and academics alike; however, his

autothanatography has been ignored almost entirely. Although in This Wild Darkness

Brodkey presents as moral bravery his public announcement of having AIDS, his desire

not to lie about his disease is in step with his previous bouts of literary disclosure

evidenced in his prolific literary output. Brodkey had a recognized penchant for

disclosing personal information and was often accused by peers and literary critics of

harboring a deep narcissism53 (a trait which is apparent in his autothanatography). He has famously claimed, “I am the Devil in The Witches of Eastwick,” much to John

Updike’s surprise, and that he tends “to be in a number of Updike books” (Smith, “The

Genius” 56, 65). The similarities one may draw of Brodkey’s life events as described in

This Wild Darkness to those of his fictional doppelgänger Wiley Silenowicz are numerous, and their status as autobiographical parallels is clear by Brodkey’s own admission (New York). Much of the material in The Runaway Soul was taken from

Stories in an Almost Classical Mode, both of which detail Silenowicz’s life from the time of infancy and young childhood, when he was ill and separated from his biological mother; to living with adoptive parents and caring, during his adolescence, for his dying adoptive father; and then on to enjoying a writing career, during which he finds both community with and admiration (and disdain) from his literary peers because of his

53 Dinitia Smith, “The Genius: Harold Brodkey and His Great (Unpublished) Novel” (1988). 150

substantial talent. In much of Brodkey’s fiction and nonfiction, there is a unifying theme

of a desire for relationships and a search for acceptance, both personal and literary.

Achieving this sense of belonging is something that Brodkey has struggled with

since childhood, and the impulse to belong has not deserted him in his

autothanatography even as he perches on the edge of death. Early in This Wild

Darkness, Brodkey merges concerns of disease, family, and social communities in order

to make several statements about having AIDS and what it affords and denies him by

way of community as a PWA:

One of the things that struck me when I was first told that I had AIDS was

that I was cut off from my family inheritance of fatal diseases—the

strokes and high blood pressure and cancer and tumors of my ancestors.

My medical fate turned out to be quite different.

I felt a bit orphaned again, and idiosyncratic, but strangely also as

if I had been invited, almost abducted, to a party, a somber feast but not

entirely grim, a feast of the seriously afflicted who yet were at war with

social indifference and prejudice and hatred. It seemed to me that I was

surrounded by braveries without number, that I had been inducted into a

phalanx of the wildly-alive-even-if-dying, and I felt honored that I would,

so to speak, die in the company of such people. (23)

The contradictions apparent in this passage are numerous: Brodkey is perhaps invited, or perhaps abducted; this is both a party and a somber feast; the attendees are enfeebled yet brave, wildly alive yet dying. Brodkey is orphaned but also, significantly,

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companioned. There are echoes of his struggle for power amid powerlessness, but this time it is his lack of irresistibility which appears only when he writes overtly of medical issues. The passage conveys Brodkey’s felt complexity of his position as a PWA who, because of his heterosexual and lengthy marriage and lack of intravenous drug use and other high-risk behaviors, does not at present adhere to the sociomedical model of those who are infected with HIV.54 He notes his feeling of abandonment, of being “cut

off” from a history which he supposes is his, a recurrent theme in the text and in much

of his other writing. This time, however, he is cut off from an inherited retinue of

diseases that for Brodkey carry the marks of masculinity passed down from his biological

father and his biological mother’s father. He laments that his “medical fate turned out

to be quite different” from that of his biological family. Many common treatments and

complications of strokes, high blood pressure, and cancers may engender lengthy

hospital stays, continual medical monitoring, and scores of tests and prescription drugs,

as well as carry certain stigmas in relation to so-called lifestyle choices (such as

unhealthy eating, smoking, or other factors that increase disease prevalence).

Brodkey’s comments thus raise the question of how, exactly, the medical fate of having

HIV/AIDS is “quite different” from the fate he would have encountered if he had

presented with one of these other diseases.

In answer to this question, one might cite HIV/AIDS’ unpredictable trajectory,

one that is formed largely on the basis of the presentation of epiphenomenal

opportunistic diseases, and this would seem a logical answer. However, Brodkey’s

54 I discuss this model in chapter three on Eric Michaels’ Unbecoming.

152 immediate statement of feeling “a bit orphaned” as well as companioned by an alternate group implies that he is speaking, not of disease trajectory, but of the nature and meaning of disease representation as it relates to the supposed genealogical masculinity he so admires in his male forebears. Medical and lay conceptions of cancers and tumors have included the theory that they arise from harboring anger or resentment and lacking emotional release or from being stoic.55 The strokes and high blood pressure Brodkey mentions speak to a masculine bravado brought on, perhaps, by an excess of temper; their mention functions as a thread to Brodkey’s physiological and thus supposedly inherent masculine traits from which he has been “cut off.” In a rare moment of admiration for his family’s bravery, in particular the bravery and sexual prowess of his biological father Max Weintrub, a “semipro prize fighter in his youth”

(21), Brodkey writes that they were “insanely brave” and speaks of their “arrogant sangfroid about their courage and what it allowed them to do” (22). Of Weintrub he boasts, “My father once boxed a dozen men in a row one evening on a bet and supposedly laid all the women under thirty who lined up afterward. Another time, better attested, with two other men he took on a squad of marching local Nazis in St.

Louis, twenty-five or thirty men, and won” (23). These statements of physical and sexual bravado are in marked contrast to those he makes of his adoptive father, Joe

Brodkey. The latter comments identify Joe Brodkey as sickly, weak, effeminate, and, as I have noted previously, sexually abusive to Harold Brodkey as a young man. Brodkey

55 Jackie Stacey offers an in-depth discussion of her own experiences with having a cancerous tumor and the various sentiments of blame that she heard from others, including medical professionals, in Teratologies: A Cultural Study of Cancer (1997). See also Susan Sontag’s Illness as Metaphor (1990).

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contrasts his two fathers, positions them textually as though it is from Weintrub that he gets his sexual irresistibility and Joe Brodkey who takes advantage of the genetic trait

(as indeed he does of Weintrub’s biological son). Instead of entering into the familial record as one who died of an expected disease passed down by his ancestors, Brodkey’s sexual past, his sex with other men, overrides his medical/biological fate and contributes to his disease.

But here, too, Brodkey assumes a sociomedical model that confuses sexuality with unsafe sex. He further mistakes the sex of the person with whom he is having intercourse—male—as the risk in relation to himself and his masculinity, not the

disease.56 HIV/AIDS is a disease whose medical implications are taken up by the social world in order to construct risk management strategies modeled on and modified from medical scripts regarding the continued safety of the supposed healthy rather than the safety of the ill. Conversely, gay sexuality is a sociocultural concern that has, at particular points, been adopted by the medical community as pathological. Brodkey is compelled to construct this connection within his text in order to mesh with his internalized conceptions of disease, as well as to assert his own conversion. Brodkey’s text speaks to the often fluid borders between the two realms, social and medical. The passage above contains the troubling assertion that Brodkey feels as if he had “been invited” or, he corrects himself, “almost abducted” to this strange and somber party inhabited by those (most of them gay) others who have been cut off from health and

56 This is the same error, of course, that Eric Michaels’ text uncovers in its discussions of Health Minister Blewett’s statements of risk reduction to the exclusion of the “general population.”

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must suffer their illnesses with the added burden of social indifference. He also seems

to accept his pathological exclusion from his own familial group while admitting that he

“felt honored that [he] would, so to speak, die in the company of [the seriously afflicted

with HIV/AIDS].”57 Brodkey recognizes the “social indifference and prejudice and hatred” with which PWAs must contend, and yet he suggests that he finds an alternative sense of bravado in this group, the “wildly-alive-even-if-dying.” Perhaps, the text seems to say, these people and this death are not so different from Brodkey’s ancestors and their collection of specific and permissible diseases. And yet, for Brodkey not to admit his infection with HIV would be for him to forego the opportunity to construct his current experience in relation to his past irresistibility. He would be unable to explain that while he was once mistakenly engaged in affairs with other men, he recognizes the error and the cause of this mistake, and he now embraces his heterosexuality, which was there all the time. After all, he maintains as though a point of proof, “I was never accepted as gay by anyone, including someone who lived with me and claimed to be a lover” (29).

This single passage of uncertainty from This Wild Darkness encapsulates the tensions in the text between Brodkey’s struggle to accept his disease and to present his related illness as normative—not quite so different from other illness experiences he and others may have had—and his suggestion that gays are deviant, a group who invites one to bear part of the burden of illness, or worse, a group likely to use abduction.

When taken together, the terms “invite” and “abducted” smack of that well-known

57 It is worth noting that Brodkey makes only a single mention of a high-risk group other than gays, hemophiliacs, and he does so in a single, clipped clause, noting vaguely that some hemophiliacs are brave. 155

homophobic slur meant to denote the coercion of the unsuspecting heterosexual

innocent, “recruitment,” a term which Brodkey makes use of in later discussion about

male sexual advances related to his own irresistible nature: “Every touch verges on

abuse, on recruitment” (56). The sense of being “almost abducted” in this passage is

linked to disease and illness experience, as well as to Brodkey’s recognition of the

stigmatization of PWAs. Rather than linking Brodkey in a morbid camaraderie with

other PWAs, as this passage seems to do superficially, in context the passage serves

through the text as a reminder of Brodkey’s portrayal of gayness as pathological even as the portrayal is buried within what appear to be community driven sentiments.

The counterpoint to gay sexuality and its pathologization in the text is Brodkey’s idealization of Ellen Schwamm as the motherly wife, the partner without whose attentions Brodkey feels he would certainly meet his death in near immediate terms.

Brodkey comments frequently on the love-in-quotation-marks that is possible between men, the “love” that has marked him for death. In opposition to this false love, the love that he receives from his wife sustains him. I mention this love within the bounds of heteronormative discourse as a counterpoint, albeit in brief, to Brodkey’s discussion of male affection and the several ways in which it has wounded and still wounds him. The text discursively positions the heteronormative social/familial effort which Ellen personifies as essential to the medical effort in prolonging Brodkey’s life. When Ellen was there, Brodkey observes, the “medicine came on time, the IV was properly adjusted—and the attention, in its smallest details, had in it an element of respectful

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shoving at the body and the spirit in its fall, a funny kind of summoning . . . not to glory

but to make use of the technology and techniques of treatment, to profit from them”

(45). Her presence effects the buoying up of Brodkey’s corporeal and spiritual selves,

both in terms of enhancing the use of medical technology and in enjoining him to profit

from his treatment more fully.

Even Brodkey’s doctor Barry recognizes the essential healing and sustaining

qualities that Ellen brings to Brodkey’s holistic care. When deciding whether to release

Brodkey from the hospital, where he has been resident with Pneumocystis pneumonia

for several weeks, “[Barry] said I had a number of factors [for recovery at home] in my

favor, Ellen in particular, and he sort of semi-bowed to her. She looked stern and

nurselike” (85–86). The image is a powerful one: the doctor and the wife hovering near to the prone Brodkey, the doctor’s deferring to the wife’s ability to care for her husband, her nurse-like appearance and implied determination sealing the doctor-wife pact of care. In fact, both Barry and Brodkey are confident in Ellen’s curative powers.

Barry sees Brodkey’s treatment “more and more in terms of us, of Ellen and me, to such an extent that he began to tell her what I should do medically, and I could close my eyes and rest while he did it” (83). The authority that Ellen obtains in relation to her husband’s treatment is significantly opposed to Brodkey’s relationships with men in which he seeks protection. Ellen comes to signify the purveyance of wellness and relative health (actual love instead of mere irresistibility), while Brodkey’s past lovers come to signify the giving of death, as in the statement of infection, “[Charlie] died of

AIDS. I think he was the one who gave it to me” (143). It is not unusual to speak of

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one’s disease as a thing gotten from another person rather than as a thing in itself.58 It

sustains the tangible locus of blame, which Brodkey needs and thus constructs textually

through conversion, and further upholds Brodkey’s argument of final enlightenment.

More than a purveyor of wellness and health, though, the text marks Ellen as

reconstituting Brodkey. She, in part, acts as his will to live and facilitates his desire. He

“came alive again, for a little while,” with Ellen’s guidance, and “why not? When other

things are over and done with, when savagery and silence are the impolite, real thing,

you’re not alone. You still pass as human among humans. There are things that have to

be done, family things, literary stuff, things having to do with AIDS” (98). She gives him

a reason and means through which to live and to express life rather than give life up to

the processes of dying: “I do [these things] with her marks of interest and amusement

on my face” (98). If, as he contends, his search through homosexuality was to find a

sense of embodiment, if his writing this text was to grasp it with both hands, then his

lauding of Ellen is to share it and thus to reinforce its reality. Because he trusts her, his

claims to give himself up to her interpretation are in order to facilitate his own sense of

embodiment.

This Wild Darkness: The Story of My Death is the autobiographical account of

Harold Brodkey’s bodily centered crisis and the trauma that underscores his

confrontation of death from AIDS. The text emphasizes the centrality of an irresistibility

58 See, for example, The Gift. Dir. Louise Hogarth (2003). The documentary has some difficulties with attributing the rising seroconversion rate to the younger generation’s inability to distinguish promiscuity and sexual desire from the transmission of disease (or “gifting”), as well as of their searching out infection as markers of their sexual desire. Desire and transmission thus become interconnected in the documentary to the extent that the narrative of promiscuity and gay male desire is at times inseparable from the narrative of deliberate infection. However, the documentary illustrates well the euphemism of “giving” and “getting” a disease. 158

mired in sexuality and engages his dying from what was at the time and still is a

culturally and politically charged disease. With the writing of his text, Brodkey seeks to

normalize his experience and to place his story firmly in the tradition of the self-

disclosure of autobiographical writing. That is to say, he desires to make his text a

palatable read that relies on the verity encapsulated in Philippe Lejeune’s theory of the

autobiographical pact.59 He aims also to make his dying “a death as much like any other as I can,” for Brodkey recognizes that “Culture aims toward death, no matter what it says” (115). This Wild Darkness is his attempt to construct an autothanatographical

“truth” apart from the accepted narratives of HIV/AIDS, to tell his own story of illness before others have the chance to construct one and thus to undermine his agency as recorder of his own history and author of his own experience. Brodkey’s disclosure of having AIDS and the writing of This Wild Darkness are intended, in large part, to save face and to stymie his peers’ gossiping habits. 60 His explanation for his contraction of

AIDS, much of which his peers can already guess given his heretofore open disclosure of personal history, is made all the more significant in relation to his assertions of his current normalcy in his marriage.

Brodkey’s desire to make the story of his death “as much like any other as [he]

can” means, he says, that he will not lie about his having AIDS. Yet, this statement also

59 In brief, the autobiographical pact is a tacit agreement that the reader makes with the author of a nonfictional text that purports to make claims of truth. The reader assumes that the author’s proper name in the world is the same as that on the cover of the text and of the first-person pronouns in the text itself. Further, the reader assumes the contents of the text are authorial truths. Should any of these conditions be unmet, the pact is broken.

60 Brodkey makes a special note that the “New York agreement among people of my sort is that everything about one another’s lives is knowable. You take a few clues, regard them with sophistication, and you know everything” (27). 159

speaks to what I propose is one of the central tensions of the text, one that Brodkey

uses to provide cohesion among disparate phases of his life: Brodkey’s attempt to

portray his AIDS illness experience and dying as normative, de-pathological, while

simultaneously portraying gay sexuality as pathological within his own story. This

positioning is fraught with difficulties for Brodkey, and, ultimately, gay sexuality

becomes his scapegoat, the bearer of blame for his disease and illness. It is easy,

perhaps, to understand Brodkey’s likely motivation for this placing of blame, for such

“anal diddling,” he says, “probably led to the transmission of this virus” (28). But even

as he argues that he’d “rather be open about AIDS and scoff at public humiliation”

resulting from the stigma that surrounds the virus and those who carry it (115), Brodkey

takes control of the story through engaging a narrative that both denotes his distance

from his same-sex sexual relations (and thus from a great deal of stigmatized activity)

and reinforces his current heteronormative relationship with his wife as an ideal. The idealization of the womanly, which Ellen represents, is situated as complimentary and at times as essential to the medical endeavors of Brodkey’s doctor who tries heroically to prolong Brodkey’s life. “Barry and Ellen are going to save me for a while” (49), Brodkey explains. This combination of the heteronormative social/familial effort (personified in

Ellen) and the medical effort (personified in Barry) is essential in prolonging Brodkey’s life, and Brodkey writes it in direct opposition to gay sexuality, further underlining the degree to which he has assumed external sociomedical discourses surrounding conceptions of proper care. Without either component, Brodkey argues, he has no chance of survival.

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The following chapter explores another text in which community and identity-in- disease are inextricably linked. Chapter five examines David Wojnarowicz’s Close to the

Knives: A Memoir of Disintegration and proposes a complicating of the subject in autothanatography to include instances in which individual identity is bound to collective identity through bodily references. In particular, Wojnarowicz’s text is concerned with the space in which social and medical knowledge merge to explicate the dangers of the homosexual male “body” (with the plural implied in the collective singular) and its social behaviors.

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CHAPTER FIVE

Auto/thanatography and Interpolation in David Wojnarowicz’s Close to the Knives: A

Memoir of Disintegration

In 1980, Clifford Geertz identified the significant degree of genre blending in postmodern intellectual discourse. Observing the rise in “philosophical inquiries looking like literary criticism, scientific discussions looking like belles lettres morceaux, baroque fantasies presented as deadpan empirical observations . . . [and] parables posing as ethnographies . . .” (“Blurred Genres” 20), Geertz concludes that the postmodern impetus toward genre blending has made it increasingly difficult to situate authors and their works within particular disciplines and classifications. Eric Waggoner makes a similar argument concerning his difficulty in classifying David Wojnarowicz’s Close to the

Knives. He notes that the monograph is a “singularly difficult book to engage as autobiography, largely because of the resolutely visceral nature of its writing and the

‘pastiched’ construction of its narrative” (“‘This Killing Machine’” 172). The difficulty that Waggoner notes in reading Close to the Knives as autobiography is located, it seems, in what Waggoner implies is the necessary and traditional framing of autobiographical writing as writing of the self-as-primary-performer within a text that follows a distinct and identifiable autobiographical narrative trajectory.

Contrary to this definition, Close to the Knives is a nonfiction collection of previously published and non-published essays and sketches, brief recollections of childhood, discussions of Wojnarowicz’s living in New York, political rants, ruminations

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on his own and others’ dying bodies, conversations about suicide, and thoughts on the

HIV/AIDS crisis. It is notoriously difficult to parse into individual themes. He mingles

these chapters with information about his adolescence and drug use and mentions of

his engagements with prostitution. Only a single thing in the text is absolutely clear:

Wojnarowicz is an angry man in the midst of psychic and physical disintegration. The

text offers readers a glimpse into the broken and depleted world of the outsider in New

York City. The postmodern collection of fragmented social and political commentary

and at times stream-of-consciousness writing about not only Wojnarowicz’s own body, but also about others’ bodies may appear out of reach, or at least a stretch, as autothanatographical writing. Yet, these disjointed and culturally body-centric aspects are precisely what make interpreting this text as autothanatographical so applicable.

Central to the textual composition is the recurring formation and disintegration of both

Wojnarowicz’s corporeal-self and the (members of his) community in which he grounds his text. He writes of himself and others as though he and his compatriots are parts of one and the same physical and sexual composition. I argue that Wojnarowicz absorbs these others into Close to the Knives and writes of them as the same autos, each person constructed and reflected within the other members of the community as though they are one. I propose a discussion that expands the autothanatographical boundaries set by Nancy Miller and Susanna Egan, boundaries that imply that the personal and individual body of the author is and must be the singular subject of autothanatography.

In this final chapter, I explore Wojnarowicz’s Close to the Knives in terms of the larger social scope and implications of autothanatography in reference to collective

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identity. This chapter expands upon issues of collectivity seen in previous chapters of

this dissertation. Emily Shore’s journals, for example, entwine her own identity and experiences with the other consumptives in the midst of recuperation and dying on

Madeira, an island whose primary source of economic sustenance is medical tourism.

Eric Michaels’ Unbecoming chronicles Michaels’ struggles for acceptance in a foreign country where he is dying of HIV/AIDS, while Harold Brodkey is ambivalent about his community ties in This Wild Darkness, viewing other men with HIV/AIDS as socially and sexually repugnant but also brave.

This chapter has two interrelated aims. The first is to propose a complicating of the subject in autothanatography to include instances in which individual identity is bound to collective identity by way of an especially pronounced association in the text, such as it is in Close to the Knives. In other words, I aim to facilitate an expansion of what may be categorized as autothanatography—the writing of one’s own corporeal dying—to include reference to these collective bodies, appearing in the text both individually and in the form of community, to which the author feels that his own body and thus his own bodily death are inextricably linked. In chapters three and four, I discussed the combined discourses of political, social, and medical conceptions of

HIV/AIDS in relation to gay men. These discourses strengthen Wojnarowicz’s sense of community (and outrage) to such an extent that he is compelled to entwine his own experiential subjectivity with this collective identity. In particular, Wojnarowicz’s text aims to work against the sociomedical and political assertion that the gay male “body”

(with the plural implied in the collective singular) is inherently and irreversibly a site of

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risk and contagion. Wojnarowicz takes his argument regarding these negative

assertions further than Eric Michaels does in Unbecoming, not only pointing out the

inequity of the connection between gayness and disease and the resulting

objectification of the gay body, but also proposing another interpretation, that social

and political influences use this conception to alter the course of medical intervention.

This interpretation cannot itself shake off the yoke of such objectification, as

Wojnarowicz relies on its constraints in order to make his own connections with other

persons with AIDS (PWAs). Consequently, the homogenization and categorization of the

American gay male population as inherently infective do their best to strip individuals of

any recognized degree of subjectivity. In the view of the sociomedical and political

machine of New York City, as depicted in Close to the Knives, gay men become objects that are simultaneously contained as well as dismissed as without the privilege of voice afforded to a recognized subject.

Wojnarowicz engages a persistent textual argument against the sociomedicalized objectification of gay men and their supposed infectious nature (one that is also separate from disease). In arguments similar to those made by Eric Michaels in Unbecoming, Wojnarowicz indicts numerous politicians, health officials, and religious leaders for their advancement of discriminatory policies. He lists a fraction of their perceived wrongdoings in “The Seven Deadly Sins Fact Sheet” (Close 124–131), a subchapter of “Postcards from America” in Close to the Knives.61 The numerous details

61 The “Seven Deadly Sins” to which Wojnarowicz refers are people, their designation as “Sins” a form of Wojnarowicz’s own rather devious shorthand objectification for those whom he argues disenfranchise minorities and underprivileged groups. 165

speak to the negative treatment and disenfranchisement of the HIV-positive (primarily

gay) population of New York City specifically and of the United States in general.

Wojnarowicz notes, for example, that in a bid to reassure New York City officials of the

minor nature of the AIDS epidemic, the Office of the Mayor, Edward Koch, released a

statement noting that HIV-positive homeless people “will be dying so quickly from lack

of treatment that there will be no visible increase of homeless P.W.A.’s on the streets”

(125). Outside of New York, Representative William Dannemeyer, a Republican from

California, asked the senior President Bush to “denounce a federal study of suicide

containing research by a san francisco [sic] social worker that links young gays’ and

lesbians’ suicidal tendencies with alienation from a society largely unaware of their

existence.” Dannemeyer argued that such a study “‘adds legitimacy to the heretofore

crime of child molestation’” (Close 127). Here, as in Harold Brodkey’s text discussed in the previous chapter, non-heterosexuality is linked with child molestation and acts of sexual abuse.

In a similar bout of biased rhetoric against gays, Senator Jesse Helms introduced legislation to “Cut out any and all AIDS education funding that relates to gays and lesbians.” He also introduced an amendment to the Supplemental Appropriations Act that denied travel privileges to HIV-positive people wishing to cross the United States’ borders (129) on the basis that not only were they HIV-positive but also likely to be

“homosexual”62 (an amendment which, incidentally, has only in January 2010 been

62 Warren J. Blumenfeld and Diane Christine Raymond, Looking at Gay and Lesbian Life (1993) (335–336).

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reversed by President Barack Obama). Religion, too, plays a part in sociomedical

politicking: New York Cardinal John O’Connor, for instance, served on the NYC Board of

Education’s AIDS Advisory Committee, lobbying against safer sex legislation and condom

use, all the while condoning violence against LGBT youth (Close 125–126). Wojnarowicz

details a long list of injustices, legal proceedings, and medical and political declarations

of gay and HIV-positive inequality, certainly too many to list here outside of a representative sampling.63 In each of these examples, however, there is a distinct sociomedical and political linkage of non-heterosexual orientation with being (or with the expected potential to be) HIV-positive. The early-epidemic outcome of being HIV- positive is the eventual death from one or several AIDS-related opportunistic infections, and thus the expected outcome of being gay is death from AIDS. The result of the above described and similar policies, then, is Wojnarowicz’s feeling of his and others’ being deprived of the legal, social, and medical avenues of recognition and of help that is commonly allotted to non-gays and to HIV-negative persons. In other words, Close to the Knives describes Wojnarowicz’s feeling of being treated as a single, disenfranchised, objectified, gay unit.

This externally enforced meshing of identities is taken up positively in Close to

the Knives by way of Wojnarowicz’s conflation of his own and others’ bodily experiences, to which he gives voice through written record. The creation in the text is cyclical, relying not only on Wojnarowicz’s assumption of responsibility (as the able writer) for the contents of the text, but also on the participation of other storytellers.

63 For a more comprehensive list of American HIV/AIDS medical, governmental, and social policies up to 1986, please consult Dennis Altman’s AIDS in the Mind of America (1987). 167

Arthur W. Frank asserts in The Wounded Storyteller that stories of illness are told “both

to others and to one’s self; each telling is enfolded within the other” (56). Frank

borrows from Ronald Dworkin’s attentions to the concept of the “narrative wreck” (i.e.,

the narrative told under conditions of bodily duress and uncertainty and the pervasive

fear that accompanies illness), arguing that the “self” is “being formed in what is told”

(Wounded 54–55). Through this telling, “Relationships with others are reaffirmed, and the self is reaffirmed” (56). Close to the Knives documents Wojnarowicz’s struggles to form his own sense of corporeal and authorial self in conjunction with his community affiliation and in opposition to what lies outside of his community. If, indeed, his “self” is being formed in what is told as a way out of “narrative wreckage,” as Roy Schafer suggests occurs in such tales, then certainly it is also formed in what is told by and about the others with whom he links his circumstances. The text conflates Wojnarowicz’s personal bodily experiences with those of others, mingling their representations in order to fill the perceived gap between subjectivity and the absence of agency that is reflected in the lack of political and cultural recognition as dying “subject” rather than as sociomedical object of disdain.

Wojnarowicz writes of his body-text with these others in mind. He acknowledges explicitly the degree of his affiliation with the (sometimes presumed) gay men he encounters, some of whom he has no other contact with but the brief instances of mutual and momentary recognition, as in the following passage: “Death comes in small doses . . . . There are dozens of faces I hardly know but who have become familiar over time . . . . Each one of them is a receptacle for some belief or projection of beliefs

168 and each one of them carries a piece of myself” (Close 165–166). In relinquishing these pieces of himself to others, he both creates others’ presumed narrative (that of the HIV- positive gay male) as well as allows others some measure of control over part of his story. His text reflects this joint creation and the extent to which autothanatographers see or locate reflections of themselves (and of their sociomedical predicament) in others. But more than this, Wojnarowicz’s comments also suggest the struggle for control over his body as a readable text that reflects his body. The “self” that he recognizes is physically and psychically bound to the selves of the others he encounters and with whom he finds community membership, people whose individual actions he is powerless to control but whose stories (bound to his own) he wants to give voice through writing.

In metaphorically relinquishing pieces of himself to those in his community of high-risk gay males—those to whom he relates directly—he demonstrates the communal qualities of the body as both readable text and corporeal presence. His dying body, and the threads which bind it to his story, belongs as much to others, he suggests, as it does to him. In return, others’ bodies and their body stories are tied to his through an externally enforced narrative of contamination and eventual death from AIDS that overrides the control of the stories told. Important, too, is that even this brief passage reflects Wojnarowicz’s purposeful conflation of physical recognition and the outward marking of risk and infection with sociomedical belief and issues of negated subjectivity.

Theoretical discussions of autothanatography most often relate to narratives of one’s own physical processes of dying. Rarely do discussions of autothanatography

169 reach out beyond the accepted autobiographical subject to include the dying or death of others whose experience is entwined with the autothanatographer’s sense of self. One notable example exists, however. In the succinctly named “Autothanatography,” Linnell

Secomb explores death as a process of extreme and irreversible change, be it mental, spiritual, or emotional. This change also may, but need not, be reflected in the physical body. The texts that Secomb examines acknowledge the eventual, indeed the inevitable, death of the whole person, that is, the person which includes the physical body. However, in her reading, Secomb emphasizes the notion that within the context of particularly harrowing trauma, one often experiences a very real death long before the body actually expires, calling to mind Eric Michaels’ assertion, years before

Secomb’s article, that AIDS is a disease of a thousand death rehearsals (Unbecoming 94).

Discussing the Holocaust, 64 as well as Aboriginal survivors of massacres and eugenic assimilation policies in Australia, she argues that “If the past cannot be segregated from either the present or the future, then survivors may not be those who have escaped the fatal crucible of events, but those embodying or incarnating the gravity of those events.

64 While I do not make the contestable connection as some others have done that the HIV/AIDS pandemic is parallel in some way to the Holocaust, the comparison in terms of autothanatographical stories and the often slow processes of spiritual, emotional, mental, and physical dying is salient. For instance, Leo Bersani in “Is the Rectum a Grave?” (1987) notes that “At the very least, such things as the Justice Department’s near recommendation that people with AIDS be thrown out of their jobs suggest that if Edwin Meese would not hold a gun to the head of a man with AIDS, he might not find the murder of a gay man with AIDS (or without AIDS?) intolerable or unbearable. And this is precisely what can be said of millions of fine Germans who never participated in the murder of Jews (and of homosexuals), but who failed to find the idea of the holocaust unbearable” (201). In much the same way as Holocaust survivors, HIV/AIDS sufferers are said to have experienced a social death before physical death takes its final hold. See Eric Waggoner, “‘This Killing Machine Called America’: Narrative of the Body in David Wojnarowicz’s Close to the Knives” (2000); and Ross Chambers, Untimely Interventions (2004). Derek Duncan notes in “Solemn Geographies: AIDS and the Contours of Autobiography,” too, that “Like the autobiographical act itself, the [AIDS-stricken] body is a social site” (23).

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The survivor has not eluded death, the survivor lives it” (41, emphasis mine). Survivors in this case are not surviving whole, but living fragmentary lives forever under the leering shadow of death.

In a case in which community affiliation is pronounced, as it is in Close to the

Knives, the same statements may be applied regarding death from HIV/AIDS, the specter that looms over the infected or high-risk body65 and the resultant stories one tells of illness experience. The survivor—however momentary that survival was in the

1980s and 90s—dies even as he or she lives, becoming a physical, political, and cultural embodiment of the destruction wreaked in his or her community. Especially in regard to HIV/AIDS, the past, to use Secomb’s phrasing, cannot be segregated from either the present or the future, not when so much of the illness trajectory remains the same (that unto a grueling process of dying and death which is all but ignored or shoved aside by the “general public” and politicians): “History—understood as the description of past events—is fractured when events cannot be banished to the past; when they continue their work, haunting the present” (Secomb 40). The conflation of past and present is a hallmark of autothanatographical writing—Harold Brodkey re-edits his past to contextualize his present—and even of later editing—Emily Shore’s sisters condense, edit, and contextualize Shore’s journals to adhere to their own conceptions of appropriate content. The autothanatographer often struggles and fails to locate a future, which through the processes of temporal conflation is impossible for the author to fathom. Among its many characteristics of autothanatography, Close to the Knives

65 I describe the rhetoric surrounding the labels of risk and risk behaviors in chapter one, “The Editor’s Mark: Autothanatography and Sociomedical Discourse.” 171

features struggles with issues of temporality. It is in view of these struggles and in the

context of such discussions of mutual story creation, community affiliation, and the

effects of dying and death on the corporeal and social body-in-plurality that I consider

Close to the Knives and the tenuous subjectivity of the (often outcast) PWA.

Secomb’s article lends credence to my argument that autothanatography can

and does include mortal experiences of others. However, it hinges on a metaphorical reading of death, one that does not mention the disease process that physically consumes the author’s body even while the author discusses the experiences of others.

Secomb calls attention to an elimination of important psychic elements, to be sure, but those that are nonetheless intangible. They outline an erasure of the spiritual or cultural self without the physical counterpart that is exclusive to autothanatography.

Her subjects are the metaphorical walking dead, neither physically living nor dying faster than any others. In contrast, Wojnarowicz is dying of HIV/AIDS alongside his brethren, marking his own text with their experiences and vice versa. Close to the Knives, then, fits into both of these categories: Wojnarowicz is one of the specters to whom Secomb alludes, and he is also one of the physically dying.

These theories of communal history and affiliation within autothanatography inform Close to the Knives through the varied inclusions of others’ voices. This inclusion suggests that Wojnarowicz textually groups gay male bodies en masse, subsumed within his own, a positive reclamation and counterstrategy to standard homophobic discourses. It follows the expression of community through illness and the sociomedical construction of homosexual danger conveyed in the supposed inevitability of gay men’s

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contracting HIV, and subsequently dying from, AIDS (the standard narrative of

HIV/AIDS). He thus critiques the position of the outcast PWA and the forces that

prevent his partaking of the subject-building discourse that surrounds him. In turn,

however, he also accepts a central feature of biomedicalization, the representation of

everyday life in terms of medical risks.

The medicalization of the gay “lifestyle” not only removed from the seventh printing of the DSM-II (released in 1974) the classification of “homosexuality” as a mental disease,66 it also offered the reinterpretation of “everyday life in the gay cultures of big cities in medical terms,” according to Alex Preda (AIDS 68). That is, the seventh printing of the DSM-II, and finally the DSM-III released in 1980, discursively restructured gayness into a lifestyle choice rather than a disease, and evaluated gay persons’ actions accordingly. Concurrently, biomedicalization posited a “homosexual lifestyle” association with infectious, often sexually transmitted diseases, effectively paving the way for the association of male gayness with high-incidence HIV infection. Particular risk groups are targeted for blame often through the use of medical models which promote moral positions, as Preda notes of the NIH and related institutions. Such moral-medical models posit the contraction of HIV as merely the long-in-coming medical consequence of supposedly immoral sexual acts and risk behaviors. For once “AIDS was clearly linked to sexual transmission, largely—though not exclusively—through male homosexual acts, it was inevitable that further discussion of the disease would become inextricably connected with fears, fantasies and beliefs about sexuality” (Altman, AIDS in

66 The World Health Organization was not readily convinced and struck homosexuality from the list of mental disorders more than fifteen years later on 17 May 1991. 173

the Mind 140). Linking HIV with so-called immoral behavior provided some measure of comfort to those who considered their own actions to fall well within the norms of sexual moral conduct and outside the boundaries of risk taking.

The first chapter of this project demonstrates that risk is an important link between the concept of social and medical danger and resulting sociomedical actions and policies. The four elements of risk discourse are, again, 1) categorization through difference; 2) the formation of a specific narrative regarding disease transmission (in the case of gay men this is, of course, thought of as sexual); 3) a construction of past events used to explain present reality; and 4) a reconstruction of agency, generally in the form of blame through action, from natural causality (transmission routes, for example, or a list of people or groups to avoid). Inevitably, risk plays a significant role in the construction of one’s social-, medical-, and personal-selfhood within the context of

autothanatography. Sociomedical discourse regarding the ill body injects this notion of

risk into the autothanatographer’s record of selfhood and sociomedical viability,

structuring immediate autobiographical responses and providing context for events and

issues where context is otherwise lacking. That is, sociomedical discourses of risk

structure the living and telling of autothanatography.

Discourses of risk and contagion are implicit in much of Wojnarowicz’s text. The

concepts of natural causality as well as the assumption that gay men inherently carry

the risk of infection and disease underlie the text on the whole. Turning again to the

quotation mentioned previously in this chapter, the “dozens of faces [Wojnarowicz]

hardly know[s] but who have become familiar over time,” “Each one” who, he notes, “is

174 a receptacle for some belief or projection of beliefs and each one of them [who] carries a piece of [him]self” (165–166), Wojnarowicz makes connections not only between himself and others, but also between gay males’ sexual behavior and a sociomedically accepted disease trajectory that begins with promiscuity and ends with death from disease. In illustration of this point, Wojnarowicz discusses “one homely queen I used to see years ago on the streets of the west village on nights when I was on the prowl,” a

“straggly” looking man who was “sometimes . . . alone, sometimes on the arm of a tough-looking street hustler or borderline homeless type” (167). Though they never speak, this “queen” embodies Wojnarowicz and his fears regarding the inevitability of infection with HIV. The man is a piece of Wojnarowicz which he cannot control but which is nonetheless tied to him by way of narrative and bodily scope:

In the last few years I have taken comfort when rounding a corner . . .

and suddenly coming upon this familiar stranger and seeing that he’d

changed very little; he was still looking healthy in the midst of a terrible

epidemic . . . , and each time I’d seen him since the mid-eighties I’d think:

‘Good for you—you’re still around, still alive, still healthy.’” (167)

The mid-eighties, of course, witnessed the initial onslaught of HIV-infection information disseminated into the United States, much of it tainted by media representations detailing high-risk groups and routes of transmission only later proven incorrect and/or discriminatory.67 Such information provided gays who cared to listen, most profoundly

67 For an in-depth commentary on media representations of HIV/AIDS and the gay male community, as well as excerpts from various print media outlets, consult Larry Kramer’s Reports from the Holocaust: The Making of an AIDS Activist (1989). 175 in New York City and large cities in California such as Los Angeles and San Francisco, a collective picture of themselves as inevitable casualties of HIV. More than this, however, this information presented gay men to the whole population as the face of

HIV, thus displacing fear from HIV itself onto the backs of gay men who, in reality, may or may not be at risk for contraction depending on their personal sexual histories and exposure. Information was much less about how to practice safer sex or about the danger of certain unprotected sex acts in particular circumstances (for instance, having sex without a condom with someone other than one’s primary partner) than it was about the inherent risk that gay men posed to the “general” American population. The medical-moral code was in full force, arguing no need to discuss enhancing the safety of already “immoral” sex acts.

The gay community felt the impact of such messages acutely, bolstered by the rise in numbers of those infected. It is thus no surprise that Wojnarowicz takes comfort in seeing that a peer is still healthy, still looking the same aside from ever-yellowing eyeglasses: “Our eyes have met for twelve years and we have never spoken a word, not even a nod, but we have had whole conversations in that brief contact” (167). The topics of the conversations to which Wojnarowicz refers are numerous, but all, he implies, center on gay life, community, health, and conceptions of risk. Of course, the concept of “healthy” or not healthy in this context is based solely on the recognizable outward manifestations of HIV, most recognizably in the form of Kaposi’s sarcoma lesions, just as it is in Eric Michaels’ Unbecoming, the lesions that produce, for Michaels, a narrative frame in which to place the story he tells. In conjunction with the prevailing

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sociomedical attitude toward gays and HIV, Wojnarowicz himself discursively ties the

notion of contagion and risk to markers of filth, the man’s “long straggly hair” and his attire of “salvation army cast-offs”; and behavior, the man’s association with

“borderline homeless type[s]” and the connotation of probable sexual activities associated with calling someone a “queen.” These are the “whole conversations” to which Wojnarowicz alludes.

Immediately following these declarations, Wojnarowicz loses comfort as he discusses meeting the man in the street as they are walking in opposite directions. Here the passage turns, and Wojnarowicz turns with it, facing the man whose countenance he hardly recognizes until their eyes meet and he sees the man’s eyes behind the glasses, wild with fear. “I saw him at the last second,” he writes, “just as our bodies passed among turning cars and the first thing I recognized were his eyes, only now they were wild with misery and panic and it was only then that I realized his face and neck were blurred with Kaposi lesions like a school of burgundy-colored fish upturning around the contours of his jaw” (167). These burgundy-colored fish swimming up the sides of his face, overtaking any rosy glow Wojnarowicz once saw there, belong just as much to the man as to the man’s accepted narrative as established by Wojnarowicz in his continual affirmation, one of anxiety relieved, “Good for you.”

In short, Wojnarowicz already assumes the risk and contagion inherent in the gay male body and asserts this risk throughout his textual exploration of sociomedical discourse in regard to the PWA. The sexual nature of the public’s conception of

HIV/AIDS can hardly be disputed. One need only refer to the FDA’s attempt to curb the

177 spread of HIV through the lifetime blood-donation ban against only men who have engaged in “homosexual acts.” The ban came to a vote and was upheld as recently as

2010 (“Blood Donations”). One may look to Leo Bersani’s “Is the Rectum a Grave?” and its various accounts of public hatred inflicted upon HIV/AIDS sufferers, even a family of hemophiliac boys certainly too young to have contracted the virus through consensual sexual activity. If one prefers to consult statistics, one need go only as far as Dennis

Altman’s well-known early text AIDS in the Mind of America that relays the early reports on HIV transmission which stressed, in numbers and context, promiscuity among gay men (144), or to Alex Preda’s more recent AIDS, Rhetoric, and Medical Knowledge, which outlines these numerous statistics in plentiful detail. Wojnarowicz, in taking up the discourse of the gay male body as an enduring site of risk, reveals the authority of sociomedical narrative as well as its fragile position, a narrative apt to be challenged by those caught in its stories even while they succumb to the confines of its borders.

Wojnarowicz’s autothanatography reflects, too, the tensions produced when different cultural codes—based on conceptionalization of morality, risk, contagion, community, and others—are in apparent support of the objectification of the author and his contemporaries. In Close to the Knives, these intersections are the ever-shifting ground on which PWAs struggle, often unsuccessfully, to (re)claim agency from a sociomedical system that denies them subjectivity as a result of disease and its probable routes of transmission. Wojnarowicz foregrounds this problem explicitly: “Late yesterday afternoon,” he writes,

a friend came over unexpectedly to sit at my kitchen table and try to find

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some measure of language for his state of mind. . . . He’s been on AZT for

six to eight months and his T-cells have dropped from one hundred plus

to thirty. His doctor says, ‘What the hell do you want from me?’ Now

he’s asking himself, ‘What the hell do I want?’ (111)

In a general sense, this passage speaks of one in the midst of suffering from a virus for

which research through the 1980s was focused not on cure or even treatment, but on

testing and immunization (to save the “general” population).68 In this example,

Wojnarowicz textually assumes the accepted discourse of the medical community and its call to be absolved of responsibility in both a medical and a social sense. This friend’s doctor wants no accountability for the patient whom he cannot cure, one who represents a manifestation of the absence of medical control and triumph over mortality, and the doctor implies as much: What the hell do you want from me? In the above context, even comfort in physician-patient dialogue is not an option for the PWA.

He has little or no recourse in terms of bringing about any social (or legal or medical) ramifications against a care-less doctor for lack of treatment and recognition of his humanity. As if to illustrate this point, the language that this friend uses is the doctor’s, the language to which he must turn given his lack of viability as a speaking subject within the context of medical and social discourse. He merely echoes back the doctor’s assertion of helplessness and uncertainty and blameful questioning of what, in fact, he does want. Wojnarowicz presents him as being in no position to say that he wants cure or care or legal protection, and the doctor reinforces this feeling with his callous

68 Again, consult Leo Bersani, “Is the Rectum a Grave?” (1987); and Alex Preda, AIDS, Rhetoric, and Medical Knowledge (2005). 179 questioning. As a person to whom all avenues of discursive control are closed, the friend has no route to desire of any type, desire which in itself is valid in regard to recognized subjects only.

Wojnarowicz’s editorializing of his friend’s aim—to “find some measure of language for his state of mind”—is one that posits the language of a “state of mind” as a necessary complement to expressing a “state of body.” The purpose of this linking is in part so that he may project onto such a state some ability to describe the difficulties of articulating the multifaceted illness experience. This discursive framing suggests, in turn, that these states are linked inextricably and that describing one might assist or even stand in as proxy for describing the other. The friend is able to describe neither in the presence of the doctor, who censures him for questioning even T-cell counts and the toxicity of AZT.

However, this conflation is a slippery one for Wojnarowicz. The full discussion

(or the parts of it that are relayed in the text) conflates, too, his friend’s dying body and mental capacity to comprehend his uncharted death with Wojnarowicz’s mental difficulties regarding his own failing health from HIV. Such a conflation also reflects

Wojnarowicz’s assertion of his friend’s linguistic impotence, and thus his own impotence, regarding his disease trajectory. As the doctor’s comments suggest, comfort for the PWA is not and will not be forthcoming, and neither should it be expected. The friend’s only option is to flounder openly while “unexpectedly” seeking out comfort for the mind through the process of attempting to express his fears and difficulties. There are knick-knacks and other accoutrements and medicines on the kitchen table where

180 they are seated. These are presented as palliatives for the mind, not the body, which is, as Wojnarowicz’s title suggests, disintegrating, the final throes of which process will terminate even the possibility of spoken or written language. There is only the attempt to rein in and express the articulable troubles of the mind, however achingly difficult, and hope that these are sufficient to encompass the state of the body.

Wojnarowicz’s friend tries to take the most minimal control of his situation and seek a safe place to air his grievances (even if they are not met with anything more than a distractedly sympathetic but wandering eye and ear). Wojnarowicz does not, perhaps cannot, offer any comfort to the body of his friend; he observes that “a hug or a pat on the shoulder won’t answer the question mark in his voice” (112). Wojnarowicz implies that there is no sincere or concrete language with which to speak on the PWA’s body’s behalf. There is no language with which to express comfort for what appears as an all- consuming illness. The ability to request such help directly is, in this early era of

HIV/AIDS and gay-shaming, not yet a part of the discursive landscape. Thus there is also no language with which one can confront his doctor and articulate the need for relief.

Here, too, Wojnarowicz has internalized, like Brodkey, the distancing discourses that surround and pass judgments on gay men with HIV/AIDS, and these judgments filter into the textual record of experience.

Speaking of the difficulties of doctor-patient communication, certainly applicable to the sociomedical position of the PWA, Lars-Christer Hydén remarks that “The clinical gaze of the medical profession [has been historically] focused on the inner bodily world of the patients” (48) (i.e., to the biomedical model of disease). The overriding clinical

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gaze of the physician therefore inhibits the patient’s ability to articulate the disease

process as he understands its impact on his illness experience, as well as those

experiences themselves. As mentioned in chapter one, the biomedical model of disease

dictates that patients’ articulation of their illness experiences are at best viewed as secondary to the pathological observations of the body made by medical professionals, and at worst as wholly insignificant to the disease process and to the care of the patient.

This view reflects an obvious hierarchic structuring of medical control over the body and subsequently dictates the relevant experiences of the patient according to disease, points of struggle in Close to the Knives, Unbecoming, and in much autothanatographical

memoir. Minimizing the patient’s perspective is a discursive process that opens the

door to disregard, dismissal, or even patent combating of the expression of patient

concerns, as in the circumstance relayed by Wojnarowicz’s friend.

The fuller passage in which this discussion between Wojnarowicz and his friend

takes place provides an illustration of how Wojnarowicz weaves the tensions of

discursive control into the text. Indeed, by way of interjections to conversations and

glosses to specific occurrences he calls attention to his position as narrator and author and the assumed textual control such a position offers. Simultaneously, he foregrounds the lack of agency experienced by his peers. Through a multi-voiced textual

representation of others’ thoughts and experiences, Wojnarowicz purports to give back

to his peers a degree of empowerment, even as he employs this representation to meet

his own textual ends. That is, Wojnarowicz textualizes sociomedical discourse but does

not register its editorial import. The multi-voicedness of the text is necessarily mediated

182 by Wojnarowicz’s narration, his own deathly artifacts often mingling with the voices he interprets:

I know what he’s talking about as each tense description of his state of

mind slips out across the table. The table is filled with piles of papers and

objects; a boom box, a bottle of AZT, a jar of Advil (remember, you can’t

take aspirin or Tylenol while on AZT). There’s an old smiley mug with

pens and scissors and a bottle of Xanex for when the brain goes loopy;

there’s a Sony tape recorder that contains a half-used cassette of late-

night sex talk, fears of gradual dying, anger, dreams and someone

speaking Cantonese. In this foreign language it says: ‘My mind cannot

contain all that I see. I keep experiencing this sensation that my skin is

too tight; civilization is expanding inside of me. Do you have a room with

a better view? I am experiencing the X-ray of Civilization. The minimum

speed required to break through the earth’s gravitational pull is seven

miles a second. Since economic conditions prevent us from gaining access

to rockets or spaceships we would have to learn to run awful fast to

achieve escape from where we are all heading…’

My friend across the table says, “There are no more people in

their thirties.” (111–112)

Wojnarowicz includes fragments of others’ stories, presented in this passage by means of quotation. However, these inclusions do not alone represent a dialogue between

Wojnarowicz and others because they do not themselves destabilize the text. His

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control over the inclusions’ placement and function, his translation of the “foreign

language [that] says,” and the fact that they do not alter the direction of the story

suggest that there is no doubt about whose consciousness is being represented overall.

Wojnarowicz is adopting and adapting these snippets to suit his textual purpose. Many

of Wojnarowicz’s visual compositions are multimedia collages whose challenge to the

viewer is to identify the various components that make up the whole; his writing is little

different, employing several voices in order to complete the composition of his own

voice and self representation. The polyphony is in this sense incomplete, regardless of

the additional voices offered in this passage, whether the voice of the friend across the

table or the voice of the person speaking Cantonese on cassette. Wojnarowicz takes

editorial control of others’ texts, but his is still subject to the negotiation of sociomedical

discourses. Polyphony, when it does appear, occurs in the iteration of sociomedical and scientific intrusions of information that are announced at various points in the text, even and often especially within the inclusions of others’ voices over which

Wojnarowicz expresses control. He makes some of these more basic intrusions obvious, suggesting a parodic view of the reliability of medical control over his condition:

“remember, you can’t take aspirin or Tylenol while on AZT.” Other medicalized sentiments are mediated by social discourse and read almost as drug slogans: “Xanex for when the brain goes loopy.”

Slightly more veiled allusions to sociomedical and scientific control over expression appear in this passage, as well, buried in the translation from Cantonese that

Wojnarowicz offers, often in metaphors: “civilization is expanding inside of me. Do you

184 have a room with a better view? I am experiencing the X-ray of Civilization.” The civilization of HIV reflects both the community of PWAs inside each individual as well as the colonizing of the body via virus, the proliferation of cells responsible for the dismantling of the body’s barriers, to use a metaphor to explain a metaphor. The virus colony presses against the individual elements of the physical body, whose parts are growing too weak to work together to sustain life. Concurrently, this “room with a better view” expresses the body as separate from the supposed non-physical self encapsulated within its confines. The observer peers from the room of the corporeal self out onto the scenes of the world from which he is forever held apart, as the “X-ray of Civilization,” now with an authoritative capital “C,” tells him he is. The PWA is also seen through this X-ray of Civilization, the body on constant display and the consciousness within the body trapped and lacking recognition apart from blame for one’s disease.

This disconnect of physical body from spiritual self, mental self, whatever one terms the thinking being apart from its outward physical manifestation, mirrors the sentiments of the friend’s doctor, indeed, of Wojnarowicz’s own mental wanderings:

“My eyes settle on a six-inch-tall rubber model of Frankenstein from the Universal

Pictures Tour gift shop, TM 1931: his hands are enormous and my head fills up with replaceable body parts; with seeing the guy in the hospital; seeing myself and my friend across the table in line for replaceable body parts; my wandering eyes” (113). This mélange of images suggests that a person experiencing protracted illness is, just as the doctor’s initial iteration proposes, set apart as an object to be divided down to its

185 individual (and thus implied separate) parts, one whose physical pieces—and the dangers those tangible elements denote—overrides a sense of holistic selfhood.

Importantly, in these imagined fragments, Wojnarowicz has assumed the same language of objectification he opposes. There is an additional focus on seeing and sight, on eyes as tools that settle, as if to make sense of what is being seen, and then, seeing an object, wander off in search of another or a more interesting object. Wojnarowicz’s wandering gaze echoes that of authoritative others, physicians, politicians, even the “general public,” who reside outside of the sociomedical confines of the HIV/AIDS community.

He imagines only diseased parts in need of replacement.

Wojnarowicz offers this excerpt under multiple veils sheer enough to allow reader recognition of the superficial shape of what lies beneath—the translation of one language to another, Cantonese to English; and of one medium to another, recorded voice to printed text—without revealing or calling attention to the methods of translation. However, these veils are still opaque enough to secure the sociomedical messages that drive the text and to guard them from immediate comprehension.

Wojnarowicz authoritatively offers the (hidden) translation from Cantonese into English and allows readers to understand the message of the cassette tape as easily as they do any other part of the text; yet, readers may take for granted Wojnarowicz’s ability to translate the Cantonese and thus to facilitate reader understanding of the actual message. In a similar vein, the discursive authority of scientific “fact” is used to translate and give authority to the language of sociomedical control. For example, one accepts that “The minimum speed required to break through the earth’s gravitational

186 pull is seven miles a second.” The average reader relies on the weight of scientific language to provide the understanding of concepts beyond her or his grasp.

More than this, the reader relies on science to produce a statement that is understandable by laypersons who are precisely without the advanced scientific knowledge required to test the validity of the statement: therefore, It must be true because I can’t prove it otherwise. The authority of such scientific statements is transferred to the sociomedically driven statements that follow it directly: “Since economic conditions prevent us from gaining access to rockets or spaceships”—who could argue that’s not true?—“we would have to learn to run awful fast to achieve escape from where we are all heading.” Where are “we” all heading? In the context of the HIV patient and her or his projected life trajectory, echoed in the helplessness of the doctor’s question, “What the hell do you want from me?” “we” are all heading toward death from AIDS-related opportunistic disease.

Taking into account the intended audience of the cassette in its original form, at least insofar as the text alludes to this audience (David Wojnarowicz), the immediate affiliation surrounding the “we” is gay men. Thus the authoritative thrust of the “fact” that the earth’s gravitational pull has one by the arm (or another, more delicate body part) is transferred to the statement of where “we are all heading”: down into inescapable death from AIDS-related complications. The Cantonese is conveyed in

English by a textually unquestioning Wojnarowicz, thus revealing his collusion in a scientific statement of incontestable authority which one is then to apply to the following “scientific” statements about disease and death. Flavor this language of the

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medical establishment with a bit of literary allusion, and there is no escape from this

room in need of a better view. In short, dying from HIV/AIDS is a necessary correlation

to a “lifestyle choice”; the accepted sociomedical discourse of risk common to gay men is that they—“we”—will die of HIV/AIDS. The imposed sociomedical discourse of risk

and disease overrides their attempts to alter the telling of their own

autothanatographical stories, which must fit into the biomedically understood model of disease outcome rather than of illness experience. This sentiment is made all the more clear by the next declarative sentence, one from Wojnarowicz’s friend, “There are no more people in their thirties,” an assertion that underscores the rampant HIV/AIDS panic felt by those from within the epidemic.69 The friend’s worried declaration is an exaggeration, but also reflective of the hysteria of the times and environment in which he and Wojnarowicz live.

The inclusion of others’ expressions and bodies is seamless throughout the early

chapters of the monograph, each flowing into another throughout Wojnarowicz’s

storytelling. There is only one instance in which this is not the case, and it provides the

textual impetus for the content of the latter half of Close to the Knives. In an “Author’s

Note” included as a preface to the last and largest chapter of the text, Wojnarowicz

writes of letters from a man he calls “Dakota.” The man’s name has been changed in

the text in order to avoid the possibility of legal action brought by his family.

Wojnarowicz wanted to include these letters written by Dakota and addressed to

Wojnarowicz in Close to the Knives but could not for fear of a lawsuit. The lawsuit would

69 Of course by “people” the friend means “gay men,” as there are quite clearly other people in their thirties in New York City. 188

come, not from the letter writer, who had died, but from his parents, the keepers and

editors of familial “reputation” that often in circumstances in which sons have died of

AIDS-related complications refute any existence of both the texts and the writer-in-

context. Occasionally, such a prodigal son is reclaimed into the family bosom, which

denies his gay existence through a process of writing his story for him. They fear calling attention to their son’s disease and the way in which, they are sure, he contracted it.

Of these letters, Wojnarowicz writes, in part, “They were letters pertaining to his

sexuality in early morning dreams, his desires for a structure of his own choosing, . . . I

chose these letters because they were the only surviving pieces of evidence that

allowed Dakota to speak on his own behalf about his humanity, his animal grace, his

own spirituality” (163). Wojnarowicz outlines his own wish to construct a space for

Dakota to speak of his sexuality and humanity, an existence which Dakota’s parents

refuse to allow him within the confines of their familial editing and control. In trying to

get permission to print the letters, Wojnarowicz “spoke to [Dakota’s] brother, who told me that Dakota’s life work . . . [was] destroyed by the parents . . . . his entire identity had been murdered by his folks . . . . it is very emotional for me to have to participate in the process of denying him a voice by editing from this manuscript his personal words to me” (163–164). Wojnarowicz highlights several key interactions here that are integral to the topic of writing as it pertains to the disenfranchised subject and autothanatographical discourse. For, as Couser recognizes, “The questions of authorship and authority . . . are difficult but fundamental: to challenge the texts’ authorship is to ask whether—or how—they can be read as autobiography” (Altered

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Egos 26). Questions regarding who should have intellectual control of a deceased man’s

creative works are too large to fully explore and debate in this chapter. The

circumstance highlighted here, however, dictates that what Dakota’s parents have done

is to refute Dakota’s self-constructed subjectivity (constructed through writing and

other media) because it did not fit into their idea of heterosexual social normativity.

This was not the way they wanted him to be remembered in print or the way they

wanted his life to reflect upon their family and its history.

In the absence of the text, Wojnarowicz effects his own measure of control over

the representation, not of Dakota specifically, because he is presented under a

pseudonym, but of a common sort of sociomedical familial editing of gay men dying or

dead of HIV/AIDS. He levies criticism at the general trend of denial that disenfranchises

gay and HIV-positive men while they are living and denies their existence—legally, textually, otherwise representationally—once they are dead. Dakota as descendent, the body without voice, is powerless to stop the destruction of his life’s work. There is no legal letter-writing from the grave (“true” autothanatography, according to Ivan Callus) that would enforce the rights of another to edit and publish one’s work, unless that gift had been granted before the legal moment of death (for one may die a “subject’s” death long before a bodily one—or long after). Dakota-as-subject has been eradicated by those who do have control within the socially sanctioned legal and medical term of

“next of kin,” which in most cases excludes quite pointedly a “friend” of the deceased.

What the above passage thus interrogates is the erasure of the disenfranchised person’s subjectivity even and especially as a writing subject within the larger legal and

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sociomedical confines of American culture. Just as Wojnarowicz’s friend cannot write

himself a prescription, just as Wojnarowicz cannot write his own story without falling

into the externally mandated script set forth for him by the political and medical foundations of society—scripts that he manipulates self-consciously but nonetheless

falls into—Dakota (and the people for whom Dakota stands in) cannot claim subjectivity

within the confines of an established family narrative. Unwillingly, but necessarily in

order to protect his own work, Wojnarowicz must forego facilitating the visibility of his

friend’s text that the inclusion of Dakota’s letters would have entailed. There can be no

intertextual relationship between the two authors, for that would be yet another

reflection of the disenfranchised person and of the illegal text that must be excised.

Despite his inability to include Dakota’s letters in Close to the Knives,

Wojnarowicz circumvents any legal difficulties and manages to offer a portrait of Dakota

through the texts of others that speak about him. The last chapter, “The Suicide of a

Guy Who Built an Elaborate Shrine over a Mouse Hole,” is a multi-voiced transcription of

taped interviews, anecdotes, phone calls, dreams, and journal entries about Dakota

(again, under the editorship of Wojnarowicz). The aim, as implied by the preface to the

final chapter, is to reconstruct a life. But in fact the text reconstructs, out of friends’

memories of the deceased, a process of dying a death that is sociomedically incongruent

with the life that Dakota lived as a gay man. That is, because he does not die of AIDS,

Dakota’s death does not fall within the confines of the sociomedically proscribed death

of “active homosexuality.”

Dakota’s writing, screenplays, drawings, paintings, collages, photographs, and

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musical recordings have all been destroyed by his parents in an attempt to suppress his

sense of radical heterogeneity from the rest of his family and from mainstream society.

Diane Chisholm suggests that the form of the chapter itself may be read as a

“celebration of difference in defiance of institutions committed to cultural and sexual

uniformity” (“Outlaw Documentary” 88), possibly as a criticism against the

heteronormativity posthumously imposed by Dakota’s parents upon his life. Just as

Wojnarowicz directed the friend and translated the voice on the tape, Wojnarowicz’s text invites and directs the responses of multiple voices of the final chapter. In directing the content of the stories told by other voices, Wojnarowicz, in essence, transforms them into multiple manifestations of his own voice and responses to the leading questions he poses, a circumstance which problematizes the notion of a dialogic foundation of the text in terms of these interactions: these pieces are his voice responding to himself. It is not, as one might expect, the supposed multi-voiced-ness of

the chapter that causes narrative destabilization borne from others’ interjections of

content. Rather, it is the cause of Dakota’s death, suicide, which draws such a

formidable response from Wojnarowicz. He becomes physically and textually flustered

when he reads and recounts the letter from Dakota’s father:

I’m trying to get this fucking envelope open with cold fingers . . . so in

impatience I bent back the top fold in the letter and read:

‘. . . . committed suicide around january . . .’

and I stopped in shock. I’d built the armor well, I thought. I learned how

to freeze out death and the intensity of reactions to it. But the death I

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was freezing out was the death of people who were fighting to live and,

despite that, were killed by a microscopic virus and a conservative

agenda. (240)

This is not the narrative turn Wojnarowicz or society or the biomedical model of disease has proscribed for Dakota, a non-monogamous gay man (to compound matters, an artist, and a poor man in poor rundown New York City). If his behaviors sociomedically dictate his position as a member of a high-risk group, Dakota should have, by all accounts, died of HIV/AIDS.

“The death [Wojnarowicz] was freezing out,” the one from which he has been trying to reclaim authority even as he succumbs to it throughout the text, is that of the gay man dying of HIV infection, not of the gay man committing suicide. Politics, medicine, society, together they have made it impossible to claim a male gay identity apart from the threat of infection with HIV and the narrative arc such infection presupposes. Sociomedical discourses of risk implore the gay male body to contract the disease, if only to prove a valid interpretation of male-to-male desire. In this sense, HIV is a “good” use of the gay male body. It upholds the presupposed moral-medical model of the so-called “homosexual lifestyle.” The sociomedical narrative trajectory does not, however, implore one to commit recognizable—and, importantly, non-sexual—violence on one’s own corporeal self. Suicide is, first, avoidable (at least in theory) if one seeks adequate help early enough; second, an option that is available to anyone regardless of category (e.g., sexual orientation, age); and third, a deviance against a morally sanctioned pleasure, right, and responsibility, that of living.

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Death from AIDS-related illness, while ostensibly avoidable if one has foregone

the “deviance” of male-to-male sexual interaction, is the supposed inevitable outcome of one who has engaged in sociomedically repugnant acts of sexual pleasure. It is a death that comes to non-heterosexuals, drug users, and other sexual outliers such as prostitutes. But “[s]uicide,” Wojnarowicz claims, “is a form of death that contains a period of time before it to which my mind can walk back into and imagine a gesture or word that might tie an invisible rope around that person’s foot to prevent them from floating free of the surface of the earth” (241). Suicide, he suggests, is editable. There is a moment before the narrative arc of suicide begins, and this moment is what

Wojnarowicz is trying to capture in his final chapter. There is no discernible moment before the trajectory of HIV: remember that risk dictates natural causality, which in turn would suppose a moment before the trajectory of sexual desire, an impossibility if we

believe that sexuality exists on a continuum. Yet Wojnarowicz locates a specific—and notably avoidable—chronological point from which a suicidal person might be saved, and from which, in this case, Wojnarowicz might save that “piece of [him]self” that he has instilled in Dakota. Dakota’s death therefore recreates a loss of control for

Wojnarowicz, discursively, textually, and sociomedically. The sociomedical discourses of risk and blame designate the proper and expected death of gay men from HIV/AIDS;

Dakota’s suicide is in violation of that designation.

Dakota’s suicide acts as reclamation of his selfhood through giving in to his own impulses, dictating his own narrative and story, albeit one of extreme loss. And so, insofar as it thwarts the sociomedical model of external objectification, this reclamation

194 might be celebrated, at least in theory. Of course, Wojnarowicz does not celebrate

Dakota’s suicide (as few of us would), but, rather, attempts to revivify him through textual representation. Herein lies the difficulty, however, as in order to re-collect this lost piece of himself which Dakota represents, that is, to incorporate Dakota’s suicide into his own autothanatography and resume the narrative established through sociomedical control, Wojnarowicz must make sense of Dakota’s death as one consistent with the sociomedical borders he has discussed in his text. He does this, finally, through a conflation of his father’s suicide with Dakota’s.

While first arguing that he “can’t let go of Dakota’s suicide” (254), he comes to an understanding: “I see the reflection of [Dakota’s] face in the death of my father and realize that that was the last thought to come to me. Everything else I have written to this point was leading me into an indistinct memory of the day my father killed himself”

(269). Only when Wojnarowicz textually recognizes his father’s suicide and acknowledges his father’s closeted gayness (and its own forms of digression from the bindings of heteronormativity) can he accept suicide as a viable narrative trajectory for

Dakota, and therefore for the piece of himself that Dakota represents. Because he has already acknowledged his father’s suicide as a recognizable path for the struggling gay man thwarted in his interactions with society at large, and because that experience has already been made a part of his own experience, he can absorb into himself the piece that Dakota’s suicide had withheld from him. “He did what he had to do,” Wojnarowicz remarks finally, “and I respect him for it” (271).

Many people view contraction of HIV, or, rather, the “lifestyle” behavior that

195 facilitates the contraction of HIV, as suicidal, yet not suicide. So-called social and medical morality dictates an obligation to distance one’s self from possible causes of disease. Concurrent with this concept is the censure laid upon the medical system, that it should be able to provide a remedy for or relief from the patient’s physical ailment

(especially the “innocent” patient), whatever that ailment happens to be. The actual harm is the disease, however, not the act of contracting it. Close to the Knives, like

Wojnarowicz’s other works, written and visual, suggests that death from HIV-related illness is the fault of a medical and social system unconcerned with their negative impact on the gay community and, by remove, on society at large. HIV thus leads to death because of a faulty medical and social system, not because of the fact of its pathogenic nature.

Close to the Knives attempts to present PWAs as subjects rather than as objects of sociomedical discourse, for objectification is a social marking, as if with Kaposi’s sarcoma lesions, that both precedes and calls ever closer the corporeal death of the body. Wojnarowicz observes, “I think for people to get a sense of mortality is something akin to examining the structure of society. That seems to be the most frightening thing people can do—examine the structure of society” (“The Compression”

51). Despite Wojnarowicz’s sentiment, and despite his obvious aversion to social proscriptions that govern sexuality and the definition of health, his text still aligns with the sociomedical construction of risk and disease as it regards gay male bodies and sexuality. Whether the text is successful at presenting the PWA as subject rather than object is to simplify the content, and the context, of autothanatography. The writing

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subject is necessarily a subject. He writes to control the storied body, if not in reality, then textually. In writing (or painting or sculpting or any number of creative endeavors) he offers an alternative point of view to the objectifying discourses around him, despite his participation in them. Wojnarowicz writes from inside these discourses, pushing at their boundaries even as he uses them to create his text.

Autothanatography is undeniably a process of self-realization that operates within the confines of a changing physical presence, one that is often marked on the body-self to which others bear witness. Autothanatographers reveal themselves in moments of recognition of their physical situation, as well as in terms of the choices they make in representing disease and illness and their effects on authors’ own self- conceptualizations and of the conceptualizations of others. This is a complex claiming of agency, especially in terms of early HIV/AIDS autothanatography in which the search for a lineage of disease and illness is unavailable.

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EPILOGUE

New Challenges in Print and Online: Autothanatography, Community, and

Editorial Control

Nine months after beginning 65 Red Roses: Thoughts on Living with CF (July

2006–March 2010), an online journal that chronicles her daily experiences with late- stage cystic fibrosis, Eva Markvoort receives the first openly judgmental remarks to appear in the comments section of her blog. She describes her reaction three days later under the heading “am i over reacting?”:

after the post where i said i was in hospital again some one anonymously

[left] a very long 2 comments lecturing me about my responsibility to live

healthily and prove my worth of recieving [sic]a transplant. it was well

worded and seems to not to be malicious but it still offended me.

this person doesnt know me at all because if they did they would know

that i am a very positive person and that i have big plans for after my

transplant. but it still doesnt give someone the right to tell me how to

live. they said that by ‘living life’ and ‘tattoos and piercings’ young people

with cf are asking for infection and death. this is ridiculous!!! i dont think

they have cf. they mentioned working in the health care field and

reprimanded me on the monetary cost a transplant takes and how

everyone pays. and that if i am non compliant then i am responsible for

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killing younger cf patients because the economy of transplants will prove

that they arent worth the cost and will no longer be available. this is

bullshit. i cant stand that someone is trying to tell me what my life is

worth. (8 April 2007)70

Cystic fibrosis is a terminal disease. Though this post discusses the consequences and

imposed constraints of life after a double-lung transplant, both Markvoort and the

anonymous user understand that such a transplant merely borrows time for the

transplant recipient. They also understand that time will inevitably run out and another

transplant will be necessary and probably not forthcoming. Markvoort’s is a terminal

illness blog that finds time to discuss treatments, and transplant is a treatment that will prolong life, not cure disease. In many ways, the heading of Markvoort’s post and the assertive exchange within bring to the fore the multiple tensions among sociomedical discourse, editorial control, and experiential subjectivity that this dissertation has sought to examine: What are the relationships among autothanatographical writing practices, identity, and representations of terminal illness? How do writers explore subjective loss resulting from disease, bodily deterioration, and sociomedical stigmatization? Furthermore, how do autothanatographers negotiate extratextual influences, especially those that seek to disempower them, within their own texts? And finally, what part does community affiliation or rejection play in the record of illness

70 The full text of the two posts to which Markvoort refers is located in Appendix C. Journal entries are cited in this chapter by their searchable online data, the entry title and the individual date of posting. All entries are listed in the bibliography under “Markvoort, Eva Dien Brine.”

It is significant that Markvoort is Canadian and thus there is no direct financial cost to her or her family for her medical care within the Canadian health care system, which is publically funded. 199 experience?

The exchanges between Markvoort and her online followers and users of her blog confront these many questions; in some respects, the answers her blog provides deviate from those answers provided in previous texts under discussion in this dissertation. The organization of the preceding chapters is meant to highlight certain differences and similarities in textual and editorial control among the texts discussed, as well as to highlight the construction and availability of communities surrounding the autothanatographer.

There is a particular path one can trace from the texts of Emily Shore to David

Wojnarowicz and, now, to Eva Markvoort. While Shore is surrounded by her compatriots, Shore’s text exhibits the least authorial control over content. She is unable even to give a name to her disease without her doctors’ naming it first, despite the unmistakable symptoms of consumption that plague her and despite the treatments meant to alleviate those symptoms. After she dies, her editors have final control of the texts and their published versions of them, extracting months’ worth of materials and mentioning their doing so in only the briefest of notations. Shore writes about dying and about death, but she is unable to give that experiential process its fullest voice because of the constraints placed upon both her and her journals. In a similar vein, Eric

Michaels can begin to write about his disease only once its accepted signifier, KS lesions, manifests openly. After this sign, he begins his journal knowing that his is a terminal illness. Once this sign is clear to others, however, and his diagnosis given to him and to the government who controls his presence in Australia, he loses much of his experiential

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and textual control. He must contend with the alienating experience of the hospital

environment as well as with a lack of community. After his death, Unbecoming is at the mercy of his editors; Michaels has to ask for his editors to include particular texts, and they do (also tidying the story by including other texts which Michaels does not ask to include) because he has no social power to do it himself.

The dissertation proceeds with this issue of textual control into the latter texts under discussion. I contrast the lack of editorial control in Shore’s and Michaels’ texts with Harold Brodkey’s assertion of control through a re-narrativization of his illness, one achieved through an ambivalence toward and sometimes outright hostility regarding issues of community. Through a trajectory that connects his childhood abuse to gay sex acts and then to his diseased body and thus forces the tidiness of his own conversion narrative, Brodkey disallows others the ability to structure his illness story. David

Wojnarowicz’s text asserts the most editorial control of all in taking up the texts of others—and asserting a highly collective, multiple autos—and claiming them as

Wojnarowicz’s own in order to react against the sociomedical discourses that surround his condition. The textual control is highly enforced, regardless of the text’s slippage into the sociomedical discourses of disease and risk against which Wojnarowicz tries so attentively to work.

Markvoort’s online journal takes this collective autos and fragments it, negotiating extratextual influences through an exchange of writerly and editorial control for a community. She could easily turn off the comments feature of her journal. More drastically, she could make her entries accessible to only a chosen few. Instead, she

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makes herself and her text vulnerable to outside writing not just editing. Markvoort’s

text thus complicates the idea of writing as a means of tidying one’s own illness story, of

cleaning it up and making it reflect the image one wants at the moment to project. Her

text is a community text written by many, unlike Wojnarowicz’s community text written by one. Markvoort’s text is dialogic in its construction and blatant invitation to others to change the content and course of the text and the experience of its primary author (as

evidenced in the above interaction).

Autothanatographies are written in foreshortened time, leaving authors

vulnerable to external discourses that have immediate influence on their records of

experience. Time between writing and publication is minimized even further in regard

to the instantly publishable and accessible online journal, of which Markvoort’s is an

example. Reponses to journal entries are often posted as quickly as the journal entries

themselves. The comments that prompted the above entry from Markvoort were

written in response to a journal entry she posted just two days before the user

commented. In response to this perceived attack of bias, Markvoort implicitly asks

readers to consider what a person’s life is worth and how that worth is determined—

financially, socially, medically, morally—and by whom, issues reflected in the

autothanatographies previously examined in this project. Is a life worth less if the one

living it does not meet another’s standards in some way, if one is somehow supposedly

culpable in one’s disease progression?

The journal entry above also highlights different views regarding the appropriate

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use of medical resources and their supposed proper dissemination to those who are

perceived by others as responsible and worthy of the expenditure. Unlike tuberculosis

and HIV/AIDS, the topics of the autothanatographical writing discussed in previous

chapters, cystic fibrosis, or CF, is a genetic disease. Each person with cystic fibrosis is

born with it. There is no habit, no behavior or lifestyle or exposure that will “give”

someone CF. One might then suppose that “CFers”71 would be subjected to fewer stigmatizing comments or treatment from medical professionals and laypersons. Such comments from “anonymous” posters demonstrate that stigmatization and shaming surpass the boundaries of communicable disease and, in fact, apply to persons with terminal illness no matter the routes or possibility of transmission. The social diagnosis is “dying”; the disease in this regard is irrelevant to diagnosis. However, no one, and most especially not an anonymous medical professional, Markvoort argues, has the right to tell terminally ill people how to live what is left of their lives. Using 65 Red Roses, an unmistakably twenty-first century autothanatographical record, as its basis for examination, this epilogue suggests new concerns and new complications for autothanatographical writing, particularly on the Internet, the newest and fastest growing writing frontier.

Concerns highlighted through editorial control and textual negotiation of sociomedical discourse examined in the autothanatographies written by Shore,

71 “CFers” is a shorthand term used by the cystic fibrosis community to designate those persons with cystic fibrosis. I recognize that the term itself conflates cystic fibrosis with the people who have it; however, I have adopted the usage in deference to those people with cystic fibrosis who prefer the term as a means of positive community building through self-labeling. 203

Michaels, Brodkey, and Wojnarowicz have evolved as the methods of textual production

have evolved and expanded. Within this context, one of the most important reasons to

examine Markvoort’s online journal as representative of new directions and potential

complications in autothanatographical writing is its new view of the audience as participants. It provides space for users to interact with both Markvoort and each other through its focus on open comments and user-generated secondary content: the acceptance of writerly vulnerability in exchange for community. Unlike books and videos, the online forum allows for the possibility of readers to play a direct and nearly immediate part in textual construction as they post comments to the writer and to each other (hence the term “user”), additionally linking to their own or others’ journals, to videos and photographs, or to online articles or web forums. This interactivity distinguishes online journals from other media of autothanatography. The comments become an integral part of the journal, interacting with it and sometimes directing or producing subsequent entries.

The journal also brings the issue of editorial control to the fore. Emily Shore had to contend with her own internal editorial voice as well as with the external sociomedical concepts of consumption, each of which dictated proper etiquette and writing topics, in the event that her journals might be read by others or published after her death (as they were). Her sisters later contended with the journals themselves, wrestling them into a shape recognizable by late-Victorian standards and in keeping with the sociomedical dicta of their own day in regard to tuberculosis and infection. As

Markvoort writes and publishes (with two clicks of a button), her internal editor is

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present, as it would be in each of us, as is an overriding sociomedical negotiation

regarding acceptable content. But the journal’s external editors in the form of informed

users are always already present, as well. Rather than the fifty-two years it took to

publish Shore’s journals, Markvoort’s entries, any online entries, can be published

immediately and without cost or editor approval. The moment an entry is published—

notably while the writer is still alive—innumerable people may access it. Furthermore,

the spectacular ability of the Internet to cache content almost as soon as it is posted and

of users to cut-and-paste that content into their own journals and websites impedes the subsequent editing in which one may engage in other media.

This concept of immediate access exacerbates difficulties of foreshortened time in relation to editorial control as discussed in previous chapters of this dissertation. Eric

Michaels, for example, leaves the editors of his posthumous text some instructions for publication, not all of which are followed. However, he also writes of the removal of several entries from Unbecoming, noting that when included, “the effect isn’t riveting at all”; he leaves “nothing generic for the reader to hang on to. Worse, [his] own posthumous editorial voice keeps resurrecting from a cheaply ironized gallows . . . to confound utterly the cacophony of voices [he] employ[s] throughout” (34). While the span of his terminal illness is brief, just under a year, and thus so is the time available to write and edit the text, the medium of presentation allows Michaels some ability to return to previous entries and alter their content to better advance the story that he wants to tell and the self that he wants to present. The content that he refers to, the content that has been removed, does not appear in the journal or in any other

205 posthumous publication. Such an avenue is not open to an online journal keeper.

Markvoort can redact entries from 65 Red Roses after publication, but a savvy and interested user could easily call them up via a search engine such as Google.72

It is true that Markvoort could restrict the ability of users to comment on individual journal entries. The effect would be that her online journal would more closely represent a printed journal with respect to author-generated content. Doing so would also limit the interactivity that is especially important in online community building. This issue is compounded in instances in which individuals writing journals of terminal illness cannot physically interact because of distance or disease. Cystic fibrosis in particular limits the amount of in-person interaction possible between community members (especially adolescents with cystic fibrosis), not only because CFers have a difficult time traveling when connected to various and typical breathing machines and feeding ports sensitive to infection, but also because CFers often carry different strains of transmissible lung viruses and bacteria that are especially dangerous to others with cystic fibrosis. When Markvoort limits access to some of her posts with personal content about her romantic relationships, she does so with the invitation to other CFers to comment if they would like to be added to a group with access to these posts. Her intention, she says, is to limit access, not to strangers or people she knows only online, but to those people who know her family members (who she claims do not read her journal, an assertion that is complicated by their entries immediately post-transplant

72 Even companies such as (the unfortunately named) SuicideMachine and DeleteYourAccount that claim to reduce a person’s online presence simply move content further down in search results, making it harder to locate, but not disappear entirely. 206 and their posthumous maintenance of the journal) (“confusion,” 19 May 2009).

Markvoort is almost immediately questioned by a commenter, who asks her gently why she has chosen to ask unknown users their ages before allowing them into the access group. She responds that it is partly out of curiosity, but, more importantly,

i identify with people my own age, people in their 20’s. Particularly

people with cf in their 20’s. . . . We are very aware of our age you see,

each year being a rather large milestone against the disease.

And partly because....well... i’ve found in the past that it is difficult having

an open online presence because although the majority of people are

very caring and positive, there are a fraction of people out there who

judge. Who think that they have a right to view how i choose to live my

life and judge whether or not i am living ‘properly’. Especially after

transplant there are people who have told me that i have a responsibility

to the world to live my life according to their ‘idea’ of what is right and

wrong. In my personal experience, most of these people have been older,

usually people who do not have cf and have never had a transplant.

Sometimes people who have worked in the [healthcare] field and think

they have a lot of knowledge about my life. . . . (“an age old question,” 24

May 2009)

The sociomedical pressures that accompany keeping a public online journal of terminal illness prompt Markvoort to limit access to the content that is most personal while

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recognizing the importance of sharing content regarding illness experience. Much like

Emily Shore has done,73 Markvoort begins keeping two parallel journals (within the

same server): a locked one that contains her innermost thoughts and another that is accessible to anyone with Internet access.

These sociomedical pressures also reflect the stigmatization that Markvoort

suffers as a transplant recipient with a terminal disease, stigmatization demonstrated

through others’ importing such moralizing statements directly into the text of her

journal. Stigmatization of disease is implicit in the texts by Shore, Michaels, Brodkey,

and Wojnarowicz that this dissertation examines, and it prompts significant responses

from these authors, as it did from Markvoort. For example, Harold Brodkey narrativizes

his illness story into one that springs from childhood sexualized abuse leading to gay

sexual encounters that he subsequently vilifies. For Brodkey, his illness experience does

not originate from the disease itself, but much further back in time. The suggestion that

Markvoort “live [her] life according to [users’] ‘idea’ of what is right and wrong” alters

not only the story depicted in her entries—for she has to pause and discuss that

negotiation—but also user access to the entries themselves.

The risk that precipitates the stigmatization, in this case, is financial and moral risk under the guise of sociomedical concern for Markvoort’s health and post-transplant success (defined by length of time lived without need for a subsequent transplant, not by cure). The user writes that “The idea is to try to live healthy and making smart choices so you need only the least amount of meds and hospital stays.” On the surface,

73 I reference Shore’s “Brief Diaries,” which have yet to be discovered. 208 this may appear to be positive advice, the type of user input solicited by the community building aspect of the online journal. As the user continues through her 1,217-word pair of linked comments, however, it becomes clear that her input is not without a degree of moralizing common to discourses of risk and stigma: “Each of you [with cystic fibrosis] has a responsibility to those other CF potential transplant patients to do your best . . . or else, the others may not even get the chance for theirs because statistically the risk vs return isn’t there...moneys can be allocated elsewhere.” The user’s suggestion is that simply being alive through following every medical command rather than living her life to its fullest and happiest terms (i.e., that she should do her “best”) should be reward enough for Markvoort. Further, because she has “a good ‘brain’ and can think and read and learn and compute,” the user encourages Markvoort “to work on a spiritual path to look beyond the frailty of the body and develop from within [her] strength” (“yep.....that time again,” 3 April 2007; comment posted on 5 April 2007). The user implies that

Markvoort’s foregoing perceived risky behaviors (such as getting tattooed or pierced) is not merely penance for but obligation as a result of her drain on the medical system that sustains her. Moreover, Markvoort is obligated “to do [her] best” lest she impede or even prevent medical care for younger people with cystic fibrosis (a statement which has overtones of Michaels’ Unbecoming and Representative Donnelly’s moralizing declarations regarding others’ need for medical care). This suggestion and Markvoort’s subsequent reaction to it pointedly unmask the influence that others’ moralizing commentary has on writers’ own stories of illness. In this case, such stigmatizing judgments based on risk assessment succeed in locking down parts of the journal

209 previously available, as well as prompt vitriolic responses from users with cystic fibrosis who read and link to 65 Red Roses.

The landscape of autothanatographical writing is changing, and not because of new diseases or treatments, necessarily, or because of a new wave of stigmatizing discourse. There are old and new diseases and by now tried and tested treatments, as well as new disease treatments to come with stem cells and other technologies. The stigmatization of people with diseases is, in short, here to stay, for there will always be someone waiting to pass judgment on another. In crossing centuries to discuss three diseases—consumption/tuberculosis, HIV/AIDS, and cystic fibrosis—the aim of this dissertation is not to deduce what disease autothanatographers may take up their pens to write about next. Notably, I have not discussed at any significant length in this dissertation autothanatographies of people with cancer. This is certainly not because such texts are difficult to locate. Cancer-related illness is a well-traversed topic of autothanatography and will be, I am certain, for years to come no matter what “new” diseases medical science uncovers.

Rather than focus on the importance of the diseases of the autothanatographers whose texts are under examination in this project, I have focused as much as possible on the illness experiences of the authors and of their means and methods of facilitating their own discourse on the subject of dying while their texts navigate the discourses of society and medicine. Autothanatographical writing highlights the bodies of its authors while they negotiate the landscapes and minefields of illness. From the personal handwritten journals of early Victorians to published typewritten memoirs to Hospice

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Legacy Videos and online journals of the twenty-first century, the fundamental desire to express one’s experience with dying remains constant even as the medium of expression changes. The Internet has expanded the possibilities for writers who otherwise do not have the means to publish accounts of their experiences. A. F. Bingley with the Institute for Health Research, Lancaster University, observes that “The internet offers a medium for those who, perhaps due to worsening health, may not feel either well enough or inclined to write extensively about their experience, and are happier to write short accounts and ‘chat’ with other sufferers” (“Making Sense” 184).

Before the Internet exploded the possibilities for autothanatographical writing, autothanatographies were the province of people who were, for one reason or another, already writers or authors. Emily Shore was a prolific writer, even in childhood, a fact to which her twelve journal volumes and multiple book manuscripts can attest. Eric

Michaels was an ethnographic anthropologist with published articles and monographs when his AIDS symptoms manifested, causing him to begin Unbecoming. Both Harold

Brodkey and David Wojnarowicz were well known literary figures with numerous publications by the time they began their records of terminal illness (and in the case of

Wojnarowicz an artist, as well). Their established reputations made it easier for these authors to publish their books, easier than it would have been for unknown or first-time writers. Autothanatographies are still being written and printed in bound form. Of particular interest for future study regarding editorial practices are co-created texts, several of which I mentioned in the introduction. Even still, the avenues of publication are limited for those who are not already in the practice of writing and publishing.

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Eva Markvoort, for example, had no such literary or academic reputation on

which to build her following; rather, the Internet provided her that reputation, which

eventually expanded to include a documentary centered on one facet of her treatment,

her lung transplant. Her only mention of book making occurs on the 13th of October

2008:

It is going to be a bright, sassy, fun book on how to be a rockstar with

cystic fibrosis.

Not just how to ‘survive’ (i hate that word) but how to LIVE.

from the day-to-day to hospital stays, to growing up to reaching the end.

it will deal with the emotional, the superficial, the practical, the fun stuff

and the tough stuff. (“a new idea”)

She never wrote this book. Perhaps, as Bingley suggests, she did not “feel either well

enough or inclined to write extensively about [her] experience,” preferring instead to

write a little at a time within the confines of her online journal.

Eva Markvoort died in the hospital at 9:30 a.m. on the 27th of March 2010 while awaiting the second double-lung transplant that would have given her a bit more time.

She posted her last message on 65 Red Roses two days before with the help of her sister:

“i can’t breathe”

i’m at that point now

i’m done with the poetics

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asking for help

my sister is helping me write

actually helping me write

the medications have been piling up

they are taking their toll

i am supersaturated with medications

i’ve been medically missing in action for two days the docs started taking me off some of them to see how i would manage

and i am not managing

not managing at all

i’m drowning in the medications

i can’t breathe

every hour

once an hour

i can’t breathe

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something has to change

Something did change, of course. Something changes at the end of every

autothanatography. The inevitable occurs, as the reader already knows it will. And

perhaps this knowing lessens the blow, makes it more palatable, less of Avrahami’s

“unforgiveable affront to polite western society.” Who likes surprises like this? Maybe

it is better to know that the author is dead when one begins. What struck me most as I

was preparing to write this epilogue was the immediacy of Markvoort’s online journal,

the “immediacy of crisis,” as Egan calls it. If ever there was writing that seemed to be

“in the moment,” surely Markvoort’s journal is it. She cannot breathe. She is not

managing, not managing at all. There is one way to end an autothanatography.

What I was unprepared for was not Markvoort’s death, if only because I had

already known she was dead, nor was it the way her parents announced her death in

her journal, with a simple “Our beautiful girl died this morning at 9:30. She is at peace.

Will write more later” (“Eva,” 27 March 2010). Even the barrage of comments seemed

expected (1,811; as of writing this there are 2,458 comments on her farewell video

posted 11 February 2010). Rather, I was unprepared for the realization, as I read

through the user comments and clicked on others’ profiles and through their own journals, that several of Markvoort’s companions with cystic fibrosis were themselves dead. I followed threads and links to others’ writing and tried to determine just when and how these young people died. In most cases I was able to find out, to read the reactions of others in Markvoort’s wide circle of online companions.

This is the realm of terminal illness writing. It is—or at least can be—individual

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and collective, the experiences of one and many together holding each other up, rallying

together against the stigmatizing discourses of the outside world. “Waking teaches you

pain,” Paul Monette utters into the void when his partner Roger Horowitz dies of AIDS,

as he will, too, “this calamity that is all mine, that will not end till I do” (Borrowed Time

342). Like Monette’s memoir, 65 Red Roses showcases a series of quiet departures made cacophonous by their number, as one after another of Markvoort’s young friends dies of CF-related complications. Egan maintains that autothanatographers “recognize the limited nature of personal perspective and the necessary, indeed constitutive relations between self and other selves, personal text and other texts” (203). This overlap is even more profound in online journals, the newest frontier of autothanatography.

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APPENDIX A: HOSPICE OF THE WESTERN RESERVE DOCUMENTS

Conversational Approach to Creating an Ethical Will

Questions to pose:

What have you learned from people in your life?

What are you grateful for?

What important stories or events do you wish to share?

What personal, familial or spiritual ideas do you wish to share?

What challenges have you overcome?

What are the virtues that you uphold?

What do you wish for others to learn from you?

Think about critical decisions made in your life:

Why are you glad you made them?

What would you have done differently?

What positive actions can you undertake now?

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If you only had a limited time left to live, what would be important for you to do with the time you had left?

What will be said/sung/played at your funeral?

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219

220

221

222

223

224

225

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APPENDIX B: TRANSCRIPT OF DOCTOR-PATIENT ENCOUNTER

[D=Doctor; F=Ali’s father; M=Ali’s mother.]

001 D: okay how can I help? 002 F: yeah ( . ) he has a high fever ( . ) 003 since eight o’clock yesterday night 004 and he vomited yesterday night 005 and in the morning again ( . ) 006 he:: doesn’t eat anything ( . ) 007 refuses everything ( . ) 008 and ( . ) he’s weak ( . ) 009 since ( . ) two days 010 D: weak yes 011 F: yeah 012 D: ( . ) has he um had a temperature? 013 F: [M assenting] yes uh thirty eight 014 D: thirty eight 015 F: yeah 016 D: for how long? 017 (2.0) 018 F: yesterday night since yesterday night 019 M: [almost inaudible: all day] 020 F: [quietly] okay 021 D: has he carried on eating or not eating 022 F: not eating anything [ 023 M: [quietly] not eating 024 D: vomiting? 025 F: vomiting that’s right yeah= 026 D: =yeah? ( . ) (qtd. in Gwyn 80–81) 027 F: no diarrhea at all [ 028 M: no 029 D: any coughing? [simulates sound of coughing] 030 F: no at all 031 D: not at all 032 F: not at all 033 M: [quietly] not at all 034 D: okay 035 ( . ) 036 F: not at all not at all

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. . . 048 (18.0) [D examines Ali’s chest] 049 D: yes he’s quite hot 050 F: yeah uh do you know I’ve realized that uh 051 he has uh very big tonsils? 052 (5.0) 053 D: the other side ( . ) 054 let’s have a look in this ear as well 055 (7.0) [D unwraps tongue depressor] 056 F: open your mouth ah:: ah :: ah:: 057 D: very good 058 F: good 059 D: thank you 060 (2.0) 061 right (3.0) it’s very clear what he’s got 062 he’s got some white spots on his tonsils= 063 F: =I see 064 D: yeah? So he’s got um a sore throat= 065 F: =I see 066 D: in medical terms we call it tonsillitis 067 F: yeah tonsillitis 068 D: =okay ( . ) his ears are fine 069 F: yeah 070 D: chest is fine 071 F: okay thanks very much= 072 D: =so that’s why he’s got a high temperature okay?= 073 F: =okay thank you 074 ( . ) 075 D: now (2.0) 076 did you have any ideas as to how we should 077 deal with this ( . ) problem? 078 F: actually I have ( . ) other son [D: mmm] ( . ) 079 six and half years old [D: mmm] ( . ) he had 080 lots of problem ( . ) about his tonsils ( . ) 081 the same problem ( . ) actually he [all come?] now 082 he finished this problem ( . ) he’s coming to age seven 083 ( . ) so ( . ) I think it is better to keep the child from cold 084 ( . ) no cold drinks? something like that ( . ) 085 I don’t know any more 086 D: okay ( . ) the the ways we deal with tonsillitis ( . ) um ( . ) 087 it’s quite normal for children to have this kind of problem 088 ( . ) yeah? D’ya? [ 089 F: yes=

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090 D: =it comes and goes it’s usually a viral infection 091 a virus okay? ( . ) 092 which means that (1.0) I would like you to u::se ( . ) 093 either Disprol or Calpol to keep the temperature down 094 F: I see= 095 D: =and I would like you to use that every four to six hours ( . ) 096 regularly ( . ) plenty to drink 097 an’ it doesn’t matter what really 098 so long as it’s ( . ) cold not too much sugar 099 F: I see 100 D: right? ( . ) now ( . ) some people then ( . ) like to use ( . ) 101 antibiotics as well ( . ) 102 but ( . ) I’m not so keen because 103 antibiotics don’t deal with viruses ( . ) 104 they just ( . ) are no use (1.0) 105 and they also cause some problems ( . ) 106 they sometimes cause diarrhea and vomiting ( . ) um ( . ) 107 and it means that you have ( . ) problems for the future (1.0) 108 so ( . ) those are the kind of possibilities (1.0) 109 which ( . ) way would you like to deal with the problem? 110 (1.0) 111 F: actually if I use antibiotics for my children ( . ) 112 the problem ( . ) is ending in a short time ( . ) 113 which I ha ob observe ( . ) but the the another way ( . ) 114 some paracetamol or things yeah (1.0) 115 it will end but a little bit more than the uh ( . ) 116 D: yes take a bit longer= 117 F: =take longer 118 D: sure I understand ((yeah)) 119 (1.0) 120 F: so it’s it’s uh ( . ) family I mean the uh parents we don’t (1.0) 121 want to see our children ( . ) going down I mean getting weak 122 D: [quietly] sure= 123 F: =so we want to take some ( . ) antibiotics 124 (1.0) 125 D: you would like to do that would you? [ 126 F: yeah 127 D: yeah? 128 F: yeah ( . ) it is too difficult to to explain but (2.0) 129 if we can uh (2.0) can be encouraged by doctors yeah 130 we can do some uh paracetamol 131 D: sure= 132 F: =[we cannot lie]

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133 ( . ) 134 D: my own feeling is that 135 you’re probably better to use paracetamol and fluids 136 rather than use antibiotics 137 because you can cause sickness 138 and also resistance for the future [ 139 F: I see 140 yeah I understand 141 D: um ( . ) but if you feel strongly 142 that you would like to definitely have an antibiotic 143 we can do that as well ( . ) 144 um the other possibility’s for me to give you 145 a prescription for an antibiotic 146 and for you to wait 147 F: I see ( . ) yeah [ 148 D: and and only use it 149 if things get worse 150 you can give me a telephone call or something 151 F: yeah ( . ) 152 D: so which one of these possibilities would you like to do? 153 (1.0) 154 F: okay [slight laughter in voice] let me ask my wife 155 [to M] which one paracetamol or ( . ) antibiotics? 156 ( . ) antibiotics

[After a subdued and brief laugh, M responds to F at some length in their own language, quietly and insistently]

157 F: yeah paracetamol this time please [M still talking quietly to F] 158 D: okay (2.0) Disprol or Calpol? 159 F: yeah 160 D: which one? doesn't matter 161 F: I see uh Calpol is uh eh better than paracetamol or which one? [M whispers to F throughout] 162 D: children like it a bit better than most stuff [laughing] 163 M: yeah= 164 F: =okay 165 D: Ali? [writing] 166 F: [gives family name and spells it] 167 D: and how old is he? 168 F: uh two years and eight months 169 D: okay and the address?

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170 F: [gives address] 171 D: okay ( . ) plenty to drink 172 F: okay 173 D: Calpol every four hours please 174 F: okay thanks 175 M: thank you very much 176 D: no problem and he’s you know he’ll be healthy fine 177 F: okay 178 D: okay no problem 179 M: thanks very much 180 D: bye bye now 181 F: bye bye [ 182 M: bye

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APPENDIX C: TRANSCRIPT OF ONLINE USER POST

(Anonymous) wrote: Apr. 5th, 2007 03:04 pm (UTC) Happy Birthday....sorry you are back in hospital

I found your journal in the CF community. Congratulations on 23! You must be doing something right to get to 23 without a transplant yet. If you need new lungs soon, I hope the match is real strong (getting listed as early as possible is important, due to the wait time) and that you really work with the doctors and nurses/aides doing exactly what they ask you to do; that you exhibit compliancy and good judgment in life decisions. So many young people get carried away "living life" and forgetting that with every contact with germs, bacteria, people can whittle away the immune system opening a shot at rejection problems, or for the need for more drugs to combat infections etc....they all work negatively to the overall health and success of a transplanted patient. I know, I work in the field and have watched too many young people "blow" their chances and take on risks that in some small or big way hinder them. Every small event adds up eventually. The idea is to try to live healthy and making smart choices so you need only the least amount of meds and hospital stays. Avoid the tattoos and piercings, these are ways to whittle down your system and really are not necessary to have a good life. Concentrate on the relationships with others, get involved with being productive with learning and living your life with others, giving back is important. You know these transplants cost everyone some amount of money, we all directly or indirectly "pay" something for every transplant that is done (everyone's premiums for insurance are effected, medicaid is funded by all of us, etc.) So, it is important, that young CF patients are compliant and have success with some length of lifespan after transplant. (In order to continue the process of transplants to CF patients and young people as the success rates are closely monitored--and there really isn't any "moral" or legal requirement that genetically charged individuals must get a transplant when the stats aren't supporting success. There is a "business" decision going on behind the scenes. The CF patient comes in from a very weak and damaged position, where they have already worked through a spectrum of drugs and may even be resistant to many, than someone who's only had more recent lung infliction, the older patients exhibit better common sense, etc.) Each of you has a responsibility to those other CF potential transplant patients to do your best (like the one's before you, like the older one's do) or else, the others may not even get the chance for theirs because statistically the risk vs return isn't there...moneys can be allocated elsewhere. So, once there is enough time for the medical society and insurance companies, foundations, etc. to feel like they have enough data to know what works, doesn't work, to finesse the "ideal" candidate requirements, where the "business" side proves that its time to stop "freely" including some of these "questionable" young patients and CF patients in the transplant process(and the financial givers to foundations say "enough", and "lets put our money

232

to other areas for better success or better impact"). If you think the application process is stringent now, watch what will happen as the numbers, data prove the lack of "success". Help the other CF young people by really doing your part (compliancy, healthy life decisions), building a strong network of support (at home and at the medical facility), be "active" along the way in life (so everyone can see that it was worth our part). Society doesn't "owe" any of us, yes, its horrible to be born with CF (its also horrible to be born with MS, AIDS, autism, and many other illnesses), and yes we try to "better" every life. But, there are so many to help and funding gets tighter and tighter. Beyond that part, you still have a good "brain" and can think and read and learn and compute. I encourage you to work on a spiritual path to look beyond the frailty of the body and develop from within your strength. (I will continue with the next post---system doesn't allow too many words)

(Anonymous) wrote: Apr. 5th, 2007 03:05 pm (UTC) Continued...

I encourage you to work on a spiritual path to look beyond the frailty of the body and develop from within your strength. Prayer and inner strength will help you now and as you go on...helps defeat the stress as you go through the process; I have seen enough to feel there is something with this too. Stress eats up the energy to "fight" to keep alive and combat the infections and rejection. Get with someone (professional, 'religious' person, or a family member or friend with a strong conviction who can help "share" with you their faith or belief and or who can help you in your journey). Loose the “fear” of death or find a way to accept what happens after the body is done, try to remove all the stresses that you can identify and put them in their place where you don’t have to focus or worry on the particular idea. Get help to gain the tools to alleviate stress, hang around only healthy thinking and living people, remember “garbage in, garbage out” which for me, means what I see, hear, experience is what I often do, give, speak, and I want to make sure I exhibit a healthy side of me. We are all so unique and have our own particular and peculiar path to follow, we just have to live within our zones, accept what we do have, make the changes we can (after new learnings). It is important to stop thinking of what could have been or what we can’t have and really enjoy what we do knowing “God won’t give us more than we can handle” and we can show others how to do it…acceptance of people, places, predicaments, institutions, life, etc. We get “conditioned” by what we experience and sometimes need to put input into perspective, you cystics are different than many people in what you are exposed to, but within you are not unique…we all have the same chance within with good, healthy input for development. The physical body is important for life here on earth but I don’t think its necessary for our real life in the universe. Be comfortable with the gifts you have and show others that the “negatives” don’t have to be in constant focus/ So this is a lot to take in, I hope you find some use or value in what I have written. If you don't believe all of what I wrote, that's ok...as adults, we get input from everywhere and look at it

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figuring out what fits and makes sense. We are not all the same, we process info differently, and as adults, we decide our path and speech. I can see by your journal you have much to offer and really hope your 23rd year brings you joy and peace. You are an ARIES I think, which means you are probably a leader, be proud of who you are, be willing to "tweak" (adjust) your journey with good input, and be aware of your impact on others. I will pray that you have success and a wonderful journey here and beyond!

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