Vol. 13 No. 2 Volume 13 Issue 2 on the Cover: the Gateway by Antar Mikosz

Vol. 13 No. 2 Volume 13 Issue 2 on the cover: The Gateway by Antar Mikosz

The cover image on this issue of Ars Medica is used by permission of The American Museum of Visionary Art, Baltimore.

Please view alongside the poem “At the American Museum of Visionary Art: The Gateway” by Marjorie Maddox Hafer, appearing in this issue of Ars Medica.

We are grateful for the generous ﬁnancial assistance of the Departments of Psychiatry at the University of Toronto, Mount Sinai Hospital, and Centre of Addiction and Mental Health, and to the Munk School of Global Affairs. Published in partnership with CISP Press, Simon Fraser University.

For subscription information or to submit a manuscript, contact [email protected] or visit: http://ars-medica.ca

ISSN 1910-2070

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Contents Volume 13, Number 2

eDITorIAl Moving Together from our Past to New opportunities Tom Rosenal, Sarah de Leeuw Treasurer, Ayelet Kuper, & Brett Schrewe I – VI

FeATUre PIeCeS

How to Befriend a Cadaver by Maggie Hulbert 36 – 40

Doctors as Patients: An Interpretative Study of Two literary Narratives by Jonatan Wistrand 5 – 22

ProSe

Disease of Dignity by James K.A. Stevens 23 – 33

The Perfume of the Dying by Kim O'Connell 41 – 45

Philip larkin’s Myxomatosis and the Problem of empathy by Michael D. Shulman 47 – 56

Writing His own ending by Rebecca MacDonell-Yilmaz 59 – 65

Mortality Knocks by Pamela Walker 76 – 84

PoeTry

For the old Man on His Death Bed by Anne Rose 34 – 35 recipe: refractory Status Migrainosus by Jennifer R. Wolkin 46 Volume 13 Issue 2

Inheritance by Judith O'Connell Hoyer 58

Semmelweis to Szent rókus by Daniel Galef 57

The Professor by Cheryl Hindrichs 66 – 69

on Grieving by Simon Perchik 70 – 71

The lunger in the Attic/The Dead Abandoned at Crest Sanatorium, 1935 by Lisa Alexander Baron 74 – 75

of Unknown origin by Ali M Tahvildari 85 – 86

Transplanted/At the American Museum of Visionary Art: The Gateway by Marjorie Maddox 87 – 90

V o I l s u s u m I e e

T n n i t c h t U h j f n h r o o i i e e e h a i n t

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i x n e l r h & n :

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u e n n s l i h d - s o - - - e - erous grant from Associated Medical Services (AMS), was officially launched in Halifax in April 2018. The CAHH is rooted in the lessons and work of the Canadian community of practice that has coalesced over the past decade around the an - nual Creating Space meetings as well as other local health humanities associations. That community’s work has clearly established the health humanities as a growing and international field of inquiry and practice, a field that recognizes that arts (e.g., po - etry, painting, theatre) and humanities (e.g., philos - ophy, literary studies, history, ethics) are means of expressing and promoting human health and well- being and of understanding and ameliorating suf - fering. The health humanities do not, of course, work against health sciences; instead, health hu - manities investigate and extend an understanding that factual, objective, or positivist knowledge about human health can be strengthened with knowledge that focuses on the experiential mean - ing, emotion, aesthetics , and values of well-being. As one of the first summative papers about hu - manities in Canadian medical education observed some years ago, the health humanities are present in many places, often with all good intentions; there is not, however, a great deal of consistency about what is meant by the health humanities, nor is there consensus about their utility (Kidd & Connor, 2008). The CAHH can neither solve fun - damental uncertainties about the utility of humani - ties to human wellness and illness nor eliminate the ambiguity that accompanies the experience of being human. What the CAHH can do, and is com -

II mitted to doing, is build on the strong initiatives developed for many years in many places by delv - ing into that ambiguity and promoting the ex - change of knowledge, ideas, and critical dialogue about the health humanities among scholars and practitioners in Canada. The CAHH can and will foster collaborative explorations of the health hu - manities nationally and internationally, especially by hosting and supporting meetings, publications, and related activities. At present, our key confer - ence is Creating Space, at which we will hold our annual meetings. We are pleased to continue to the support begun by the AMS of this journal, Ars Medica . Fundamentally, the newly established CAHH seeks to facilitate initiatives and interdisci - plinary, cross-professional inquiry into research, education, and clinical practices relevant to the health humanities. What, some readers might well be asking, does this look like on the ground and in practice? How, others might wonder, does this impact me? How can I help? In other words, Canadian health humanities? So what? The good news is that many concrete examples exist in Canada of actualizing the health humani - ties. Documenting and disseminating these exam - ples is part of what the CAHH will do. Clinicians and healthcare professionals across the country are increasingly turning to humanities-based ap - proaches in efforts to thwart burnout or increase patient-centred care (Fraser, 2018; Wald, 2015; yoo, Matos, Bota, Schrewe, & Armstrong, 2019).

III Similarly, we have seen the rise of narrative med - icine, a practice that foregrounds stories and empa - thy about the illness experience, as practitioners look for efficient, socially accountable ways of un - derstanding patients (Charon, 2001). Growing numbers of health researchers and practitioners gather every year at the Creating Space conference to share their innovations and ideas about the health humanities. The desire and need for the health humanities have percolated into medical edu - cation, with undergraduate and postgraduate med - ical learners increasingly being asked to engage in creatively informed reflective practices. Patients, their families, and others who wish to explore in - stances of illness and health are also demonstrating desires to express their ideas creatively. The fact is that we live in a rapidly changing world, a place in which pluralistic, transformative processes such as the Truth and reconciliation Commission of Canada have emerged at the same time as intolerance, demagoguery, and populism are seemingly spreading like a brushfire across lib - eral democracies. The humanities offer not only in - tellectual space to explore empathy and advocacy in creative ways (Gaufberg, 2017) but serve as a firewall against the collapse of that respectful, con - sidered space itself. How, then, might we best use the health humanities to inform ourselves and oth - ers, in the service of building and maintaining strong, inclusive communities? As with anything new, there are challenges as - sociated with the unknown, with uncertainty, with a lack of set-in-stone or evidenced clarity. yet all of

IV these question marks are equally accompanied by exclamation points indicating the tantalizing prom - ise of this unknown. How can—or should—the health humanities be tailored to a Canadian con - text? Can the health humanities be used to think through uniquely Canadian realities, such as our strong and growing Indigenous population or our huge and varied physician geography? How can the health humanities be adapted to reﬂect the dis - tinctly Canadian realities of delivering a universal healthcare plan amid inter-provincial/territorial jurisdictional tensions? Why and where might Canadian health education take up the health hu -

manities in a more robust, integrated fashion? Why should Canadian healthcare professionals care, and if they do, what is to be done?

It will be the role of the recently established CAHH to assist in answering these (and so many other, as yet unidentiﬁed or unclear) questions. Members of the CAHH’s inaugural executive will be looking for answers and expertise from people interested in the health humanities from coast to

coast to coast. We hope you will be among them.

Website

Canadian Association for Health Humanities, www.cahh.ca

References Bleakley, Alan. (2015). The medical humanities and medical educa - tion: How the medical humanities can shape better doctors. london, UK: routledge. Charon, rita. (2001). The patient-physician relationship. Narrative medicine: A model for empathy, reﬂection, profession, and trust. Journal of American Medical Association, 286 (15), 1897–1902.

V Fraser, Sarah. (2018). Art of family medicine: Art for the sake of medicine. Canadian Family Physician, 64 (10), 760. Gaufberg, elizabeth. (2017). Mapping the landscape, journeying to - gether: The Gold Foundation’s model for research-based advo - cacy in humanism in medicine. Academic Medicine, 92 (12), 1671–1673. jones, Anne Hudson, & Carson, ronald A. (2003). Medical humani - ties at the University of Texas medical branch at Galveston. Academic Medicine, 78 (10), 1006–1009. Kidd, Monica G., & Connor, j.T. (2008). Striving to do good things: Teaching humanities in Canadian medical schools. Journal of Medical Humanities, 29 (1), 45–54. Wald, Hedy S. (2015). Professional identity (trans)formation in medi - cal education: reﬂection, relationship, resilience. Academic Medicine, 90 (6), 701–706. yoo, jaeyun, Matos, Meghan, Bota, Melissa, Schrewe Brett, & Armstrong linlea (2019, in press.) Bye to burnout: Intergenerational narratives break barriers. Medical Education.

ofﬁcers of CAHH/ACSHS President: Tom Rosenal

Vice President (President elect): Sarah de Leeuw Treasurer: Ayelet Kuper Secretary/Communications: Brett Schrewe

V o I l 2 s u s 0 5 u m 1 e e 8

a d d p a t o D b t b M A w f t a p w H t h o e h i b s l o e a f y e a o b r l h i o o

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. ) n l n d a a i i r i u l e - - s t , f s y a - - , - dr ridgeon: The most tragic thing in the world is a sick doctor. dr Walpole: Yes, by george: it’s like a bald- headed man trying to sell a hair restorer. The doctor’s dilemma – george Bernard Shaw (1906)

In contemporary studies based on questionnaires and interviews, doctors’ management of their own illnesses is described as a greater challenge than treating patients in their daily practice (Kay, Mitchell, clavarino & doust, 2008). extensive self-medication and hasty corridor consultations, resulting in imprecise diagnoses and blurred med -

ical responsibility, are well-documented phenom - ena (campbell & delva, 2003; Fridner, Belkic, Marini, gustafsson Sendén & Schenk-gustafsson, 2012; Ingstad & christie, 2001). The plight is

complex, but one contributing factor seems to be

an uncertainty as to how the role of the patient might be combined with the doctor’s own profes -

sional identity (McKevitt & Morgan, 1997a).

The aim of this article is to explore the sociolog - ical understanding and personal experience of the ill physician through hermeneutic analysis of liter - ary testimonies. Subsequently two narratives are in - terpreted: A Leg to Stand On (1984) by Oliver Sacks and A Country Doctor (1919) by Franz Kafka. These works have been chosen since they both describe, in a particularly illumining manner, different and complementary aspects of the events and emotions unfolding when doctors themselves

6 become patients. Furthermore, these two narratives together span a spectrum from the autobiographi - cal to the fictional. drawing on the notion of paul ricoeur that “fiction, in particular narrative fiction, is an irreducible dimension of ‘self-understanding’” (ricoeur, 1991, p. 31) , it is presumed that both fic - titious and biographical descriptions might guide us to a more profound understanding of illness ex - perience among physicians. In that sense this article follows a methodological tradition from recent decades, advocated by scholars such as rita charon and Arthur Frank, to use literary stories and narrative analysis as tools to increase our com - mon understanding of practical medical issues (charon, 2006; Frank, 1995).

Oliver Sacks: From reluctance to the enrichment of patienthood The British-American physician and neurology pro -

fessor Oliver Sacks (1933–2015) mostly wrote case

histories based on his clinical practice, including the acclaimed The Man Who Mistook His Wife For

a Hat (1985). But in the illness narrative A Leg to

Stand On (1984) Oliver Sacks also describes in de - tail his own personal and overwhelming experience of becoming a patient (Sacks, 1998). In 1974, during a hiking trip to norway, Oliver Sacks falls and severely injures tendons and nerves in the quadriceps of his left leg. After a short stay at a norwegian dispensary he is trans - ported to a British hospital for surgery followed by a period of rehabilitation. “Well, I have been a doctor for ﬁfteen years. now I will see what it

7 means to be patient” (p. 29), Sacks thinks to him - self on arriving at the hospital. However, the stay turns out to be a more challenging experience than he had ever imagined. It takes time for Sacks to ac - cept that he is now at the other end of the stetho - scope, subject to the routines and regulations of the hospital. Tucked in a hospital bed he envisages the upcoming round as an explanatory act in an enigmatic drama. At the round he will ﬁnally have the opportunity to discuss with his doctor—be - tween colleagues—the odd symptoms he experi - ences and the treatment options available. But when the hospital round has passed swift and efﬁ - cient, without paying any particular attention to Sacks as a doctor (or even an individual), Sacks is

left wretched and resigned. “I became all of a sud - den desolate and deserted, and felt—for the ﬁrst time, perhaps, since I had entered the hospital— the essential aloneness of the patient” (p. 65).

What Sacks describes on being admitted to the

hospital is a ritual ceremony following an invisible script, intended to convert him into a patient. In a

series of depersonalising events he is deprived of

his professional and personal identity and ex - pected to subordinate himself to the implicit rules of the medical drama. However, dr. Sacks’ physi - cal transformation to the patient role is consider - ably faster than his mental passage. The reason is partly his own resistance, but adding to the confu - sion are also the hospital staff, physicians and nurses, who do not know how to respond to this “doctorpatient.” Oliver Sacks writes about the ﬁrst encounter with his surgeon, dr. Swan:

8 Both of us, in a sense, were forced to play roles—he the role of the All-know - ing Specialist, I the role of the Know- nothing patient. And this was sharpened and made worse by my being, and being seen as, and partly act - ing as, his peer, so that neither of us re - ally quite knew where we stood. (p. 81) In her book Reconstructing Illness: Studies in Pathography (1999), Anne Hunsaker Hawkins shows that literary narratives of illness often dwell on a limited number of recurring themes; organisational metaphors that are shared by our cultural history and rooted in our human con - sciousness. One of these metaphors is the under -

standing of illness as a journey, and as an example of a literary narrative making use of the journey-myth, Hawkins specifically mentions Sacks’ book A Leg to Stand On . Oliver Sacks de -

scribes his recovery as “a ‘pilgrimage’, a journey,

in which one moved, if one moved, stage by stage, or by stations” (p. 132). For Sacks, it is

mostly an inner journey through mental nooks

and crannies to which he has never before had ac - cess. But it is also a physical journey into the hos - pital and further on to the convalescent home where he eventually learns how to walk again. Along this route, it turns out to be not primarily the medical actors and professional colleagues who guide him back to a complete identity. They do indeed provide the surgical procedure restor - ing the anatomy of his leg, but it is on the other side of the medical dichotomy that Sacks finds a

9 way to incorporate the experience of illness into his understanding of life. regarded as a mental journey, Sacks’ story could be divided into a number of stages. Immediately after the accident he primarily relates to the incident as a medical event. His body is broken and it needs to be ﬁxed. At this point, he takes little notice of the fact that his injury and the long period of convales - cence ahead of him will also become a personal ex - perience. desperately, he clings to his accustomed medical perspective and only reluctantly conforms to the expected behaviour pattern of a patient. From the previously unknown perspective of the sickbed, he is slowly aware of a new kind of medical drama.

The posture, the passivity of the patient lasts as long as the doctor orders, and its end cannot be envisaged until the very moment of rising. And this mo -

ment cannot be anticipated, or even

thought of, even hoped for. One cannot see, one cannot conceive, beyond the limits of one’s bed. One’s mentality be -

comes wholly that of the bed, or the grave. until the actual moment of ris - ing, it is as if one were never to arise: one is condemned (so one feels) to eter - nal prostration. (p. 107)

In the next stage of Sacks’ mental journey he seems to accept the translocation from doctor to patient. But he also sets off on an active quest, for solace and strength beyond the truths of medicine. guided by the psalms in the Bible, the poetry of

10 john donne, and the concertos of Mendelssohn, personal and healing perspectives of his illness ex - perience appear. perspectives he did not allow him - self to see from his previous medical position. Music, poetry, and later the kinship of his fellow patients open up a mental passage between the biomedical and personal experiences and enable him to gradually regain a sense of control over body and soul (p. 85). The music seemed passionately, won - derfully, quiveringly alive—and con - veyed to me a sweet feeling of life. I felt, with the ﬁrst bars of the music, a hope and an intimation that life would re -

turn to my leg—that ‘it’ would be stirred, and stir, with original move - ment, and recollect its forgotten motor melody. (p. 93)

Finally, when returning to his profession,

Oliver Sacks once again assumes the position and external attributes of the doctor. But in his new

medical identity Sacks has also incorporated the

experiences from the sickbed. The doctor who re - turns to work is a different one. His illness has been overwhelming, but the role of the patient has not permanently deprived Sacks of the ability, nor of the desire, to serve as a doctor. On the contrary, he seems to be more motivated than ever before, spurred on by his newly acquired insights. One must oneself be a patient … one must enter both the solitude and the

11 community of patient-hood, to have any real idea of what being a patient means. (p. 142, emphasis in original) From his new point of view Oliver Sacks is able to reach a deeper understanding of the subjective experience—illness—along with the biomedical ap - proach—disease—which previously dominated his thinking. He has discovered, and to some extent bridged, the ontological gulf between the objectiv - ity and subjectivity of modern medicine, and he is determined to carry this insight with him into his resumed and revitalised medical practice. I would listen to my patients as never before—to their stammered half-articu -

late communications as they journeyed through a region I knew so well myself. (p. 168) In many ways, the testimony of Oliver Sacks bears

signiﬁcant similarities to other autobiographical ill -

ness narratives by doctors from the 1980s. For ex - ample, the gastroenterologist’s robert Kravetz

who, in the anthology When Doctors Get Sick

(1987), describes his initial experience as a gastric ulcer patient. even now I am amazed at how tena - ciously I clung to my role of physician when I had, in fact, become a patient, both acutely and critically ill. (Kravetz, 1987, p. 429) And like Sacks, robert Kravetz, on his return to medical practice, carries with him a less dualis -

12 tic and more holistic approach to his medical practice. I am so much more aware of the ‘art of medicine’ and realize how the art has been almost lost to, and overshadowed by, the ‘science of medicine’ these days. (Kravetz 1987, p. 436)

Franz Kafka: The coalescence of roles in the medical drama From Sacks’ autobiographical testimony, we move to Kafka’s ﬁctional short-story A Country Doctor (1919). Franz Kafka (1883–1924) wrote this story in the winter of 1916–1917, and it belongs to the minor group of stories he decided to publish dur - ing his lifetime. The plot is dreamy and full of sur - realistic features. Still, in its depiction of a doctor’s encounter with his patient, the setting is familiar, and it has been described as “an early (perhaps the

ﬁrst) modernist story about doctoring” (Manson,

2006, p. 297). As the narrative opens, a senior physician is

called for with great haste to a young man’s

sickbed, ten miles away. It is a snowy winter night and already in his courtyard the doctor confronts his first dilemma. The horse had “succumbed the night before to its over-exertions in this icy winter” (Kafka, 1992, p.156). By chance, two magnificent horses appear out of the doctor’s pigsty, led by a previously unknown groom. The doctor departs, tormented by inner doubt realising, just as the horses take off, that the groom intends to violate his maid rosa. Terrified, she has taken refuge in

13 the interior of the house, and as the howling of the wind ﬁlls his ears the doctor hears how “the door of my house burst and splintered under the groom’s assault” (p. 157). At the residence of the patient, expectations are high. The family place their faith in the doctor. Friends drop by to see the medical authority at work. But the doctor’s visit is a failure. In his thoughts he is torn between his professional obli - gations towards the help-seeking patient and the moral responsibility towards his neglected maid. “How can I drag her out from under that groom, ten miles away from her, uncontrollable horses be - fore my carriage?” (p. 158), the doctor ponders while twiddling with a pair of tweezers. perhaps, partly due to his absent-mindedness, the doctor at ﬁrst does not even manage to perform a proper ex - amination. Then, when upon closer inspection, he discovers a large wound in the patient’s side, he

fails to provide any alleviation.

And this is where the story takes an unexpected turn. Because the moment the doctor proves un -

able to cure, his character merges with that of the

patient. In a Kafkaesque scene of dreamlike ab - surdity, the family undress the doctor and place him naked in the bed, next to the patient. There I stand stripped of my clothes, re - garding the people calmly with my head bowed and my ﬁngers in my beard. I am perfectly composed and su - perior to them all, and so I remain, though it doesn’t help me, for now they

14 take me up by the head and the feet and carry me over to the bed. They lay me down against the wall, on the side of the wound. Then all leave the room; the door is closed; … “You know”, says a voice in my ear, “I have very lit - tle faith in you. You’re just another one who’s been wafted in from somewhere, you didn’t get here on your own two feet. Instead of helping you’re cramping me on my death-bed.” (p. 160) like most of Kafka’s stories, A Country Doctor in - vites various interpretations. There are reasons to believe that the story uses the real-life dilemma Kafka struggled with between 1916–1917 as a point of departure: the choice between devoting his life to writing, or to marriage with his ﬁancée Felice Bauer. From this interpretation, the forsaken home and neglected maid symbolises the desirable life as

a married man. The doctor’s medical work, on the

other hand, represents what Kafka regarded as his true vocation, namely his writing (ekbom, 2004).

Throughout the short story, the physician struggles

to choose between fulﬁlling his professional duty and retreating to his private responsibilities. But from a medical perspective, it is far more reasonable to read A Country Doctor as a story about a general practitioner performing his tasks. What emerges from such a reading is a different story, the depiction of a doctor anguished by the discrepancy between the high levels of expecta - tions of the lay people and his own sense of inade - quacy. The family and the villagers expect the

15 doctor to perform miracles as a representative of modern medicine. “They have lost their old faith; the priest sits at home and picks his vestments to pieces, one by one; but the doctor is expected to accomplish everything with his sensitive surgical hand” (p. 159). The features of doctor and patient in the ﬁrst part of the story bear the hallmark of the classical medical drama: the doctor as a patriarch and up - right authority, the patient as a fragile being lying in bed. The story thus follows the traditional plot, approaching its expected climax, as the doctor is to pronounce a diagnosis and provide an effective treatment. But when the physician fails to meet these expectations, he is bereft of his external at - tributes and placed next to the patient. Standard- ised dramaturgy breaks apart. patient and doctor coalesce. It is tempting to interpret these merging roles

as a forced demotion of the doctor who has

proven himself unable to cure his patient. In Kafka’s short story there is equality between the

powerless doctor and the “doctor as patient.” In

an article from 2006, Aaron Manson expresses this plight in the form of a question, but the an - swer seems, in fact, already given: “In the narrative the identities of patient and doctor merge. Is the doctor also a patient” (Manson, 2006, p. 302)? In the new setting of the story, the doctor no longer understands his role. “What am I to do? Believe me, it isn’t easy for me either” (p. 160), he grumbles, tucked down in his patient’s deathbed. As he ﬁnally has to escape through an open win -

16 dow, his professional pride is demolished. “never shall I reach home like this; my ﬂourishing prac - tice is done for” (p. 161), he laments while the horses start off with inﬁnite slowness. The doctor has literally and symbolically been delegitimised and equated with the patient he has failed to cure. He has proven himself unworthy of the attributes of the doctor and been forced to accept the posi - tion of the patient in the medical drama. The doc - tor in the short story is, to quote Sander gilman, “as much victim as is the patient … wandering through the snow, unsure of his direction, of his calling, of his identity” (gilman, 1995, p. 85).

From classical scenarios towards a new approach In the traditional medical drama of the twentieth century, the norm has been to present the doctor as an elevated expert and the patient as a compli -

ant layman. In other words, a paternalistic and di -

chotomous approach, regarded as both natural and appropriate, has regulated the relationship be -

tween doctors and patients (McKevitt & Morgan,

1997b). In its turn, this approach has engendered stereotypes and a behavioural repertoire where doctors and patients have taken shape as two im - miscible actors. However, to quote sociologist erving goffman “a performance is a delicate, frag - ile thing that can be shattered by very minor mishaps” (goffman, 1959, p. 56). As the doctor becomes a patient, both caretakers and caregivers are bereft of their charted course of action and “the minute social system created and sustained by

17 orderly social interaction becomes disorganised” (goffman, 1959, p. 242). In the world of fiction, the “doctor as patient” has most often been presented as a deviation from normality. This applies in the case of Bernard Shaw’s The Doctor’s Dilemma and Kafka’s A Country Doctor , where the doctor in the sick bed is associated with qualities such as inadequacy and failure. It also applies to the first chapters of A Leg to Stand On , where the author, Oliver Sacks, by clinging to his medical perspective, denies himself access to a more profound understanding of afflic - tion and recovery. In his ambitious compilation The Doctor in Literature (2006), Solomon posen shows how fictitious doctors who suffer from ill - nesses are, in fact, seldom presented as patients. On the contrary, they are expected to handle their own ailments as professionally and rationally as they handle those of their patients. The doctor in

ﬁction thus continues, despite illness, to present

“the attitudes and behaviour patterns appropriate to his former calling. His medical training remains

with him until he dies. ‘Once a doctor, always a

doctor’” (posen, 2006, p. 238). Seen in this light, the initial unwillingness by Sacks to accept the role of the patient is not sur - prising. eventually however, he becomes emanci - pated from his professionally assigned and restricted position in the medical drama. He then approaches a position where the objective and sub - jective perspectives as a doctor and a patient are able to co-exist. As historian Andrew Hull has ar - gued, this strive towards a holistic understanding

18 of the clinical encounter was one of Sacks’ major aspirations; he wanted “to create an ‘intersubjec - tive’ medicine, in which the ‘human’ and the ‘scien - tific’ were integrated as equal partners” (Hull, 2013, p. 105). As a portrait of an initially very disconcerting experience, A Leg to Stand On also illustrates what is equally visible in contemporary studies, based on questionnaires and interviews, of help- seeking behaviour among ill physicians (Kay, Mitchell, clavarino & doust, 2008). However, while these studies seek to structure fragments of an experience, Sacks’ testimony provides us with a fully-fledged story. In that sense, the literary story that mediates a more nuanced experience than sta - tistical analysis, no matter how scientific, is able to capture with similar lucidity. The sick physician’s experience of patienthood is complicated. After recovery, however, valuable

lessons for an enriched clinical practice seem to

have been learned. The Swiss psychiatrist carl gustav jung (1875–1961) is said to have coined

the term “the wounded healer” (daneault, 2008).

For jung, a doctor’s experience of illness was not only a potential threat, but also a valuable re - source in his/her continued care of patients. A simi - lar argument was presented as early as antiquity. As plato writes about the social construction of his utopia, in the oeuvre Republic , the characteristics of a good doctor are also touched upon. And plato’s words are considerably more hopeful than those by george Bernard Shaw from the introduc - ing quote of this article.

19 In order for doctors to attain perfect skill, they must not only have learnt their trade. In addition, from childhood onwards, they should have come into contact with as many bodies as they possibly could, in the worst condition they could ﬁnd; moreover, they them - selves should have contracted every sin - gle disease there is, and should be constitutionally rather unhealthy. I mean, it’s not their bodies they use to treat other people’s bodies, of course; if that were the case, it would be out of the question for their bodies to be bad or to get into a bad state. no, it’s their

minds they use to treat bodies. (plato, 1993, p. 109) Illness among doctors as an opportunity for ex - perience-based medicine in the deepest personal

meaning of the word.

Acknowledgements

The author is grateful to peter nilsson (Md, phd)

and Anders palm (Mdhc, phd) for valuable com - ments during the writing of this article, as well as the comments from the peer reviewers.

References campbell, Suzanne, & delva, dianne. (2003). physician do not heal thyself: Survey of personal health practices among medical resi - dents. Canadian Family Physician, 49 , 1121–1127. charon, rita. (2006). Narrative medicine: Honoring the stories of ill - ness . new York: Oxford university press.

20 daneault, Serge. (2008). The wounded healer: can this idea be of use to family physicians? Canadian Family Physician, 54 , 1218–1219. ekbom, Torsten. (2004). Den osynliga domstolen: En bok om Franz Kafka . Stockholm: natur & Kultur. Frank, Arthur W. (1995). The wounded storyteller: Body, illness, and ethics . chicago: univ. of chicago press. Fridner, Anne, Belkic, Karen, Marini M., gustafsson Sendén, Marie, & Schenk-gustafsson, Karin. (2012). Why don’t academic physi - cians seek needed professional help for psychological distress? Swiss Medical Weekl y, 142 , w13626. gilman, Sander. (1995). Franz Kafka, The Jewish patient . new York, nY: routledge. goffman, erving. (1959). The presentation of self in everyday life . new York, nY: Anchor Books. Hawkins, Anne Hunsaker. (1998) . Reconstructing illness: Studies in Pathography . West lafayette, In: purdue university press. Hull, Andrew. (2013). Fictional father?: Oliver Sacks and the revali - dation of pathography. Medical Humanities, 39 (2), 105–114. Ingstad, Benedicte & christie, Vigdis Moe. (2001). encounters with illness: The perspective of the sick doctor. Anthropology and

Medicine, 8(2), 201–210. Kafka, Franz. (1992). A country doctor. In M.pasley (ed. & Trans.), The Transformation (Metamorphosis) and Other Stories , (pp. 156–161). london, uK: penguin Books. Kay, Margaret, Mitchell, geoffrey, clavarino, Alexandra & doust,

jenny. (2008). doctors as patients: A systematic review of doc -

tors’ health access and the barriers they experience. British

Journal of General Pract ice, 58 (552), 501 –508. Kravetz, robert. (1987). Bleeding ulcer. In H. Mandell & H. Spiro

(eds.), When doctors get sick , (pp. 429–440). new York, nY:

plenum Medical Book co. Manson, Aaron. (2006). A theology of illness: Franz Kafka’s “A country doctor.” Literature and Medicine, 24 (2), 297 –314. McKevitt, christopher, & Morgan, Myfanwy. (1997a). Illness doesn’t belong to us. Journal of the Royal Society of Medicine, 90 (9), 491–495. McKevitt, christopher, & Morgan, Myfanwy. (1997b). Anomalous patients: The experiences of doctors with an illness. Sociology of Health & Illness, 19 (5), 644–667. plato. (1993). Republic . Oxford, uK: Oxford university press. posen, Solomon. (2006). The doctor in literature, volume 2: Private life . Oxford, uK: radcliffe publishing.

21 ricoeur, paul. (1991). life in quest of narrative. In d. Wood (ed.), On Paul Ricoeur: Narrative and interpretation , (pp. 20–33). london, uK: routledge. Sacks, Oliver. (1998). A leg to stand on . new York, nY: Touchstone Books. Shaw, george Bernard. (2011). The doctor’s dilemma . Auckland, nZ: The Floating press.

Jonatan Wistrand (M.d.) is phd researcher at the department of Medical History, lund university, Sweden. email: jonatan [email protected]

V o I l 2 s u s 2 0 u m 3 1 e e 8

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d m a - b o e s o a n i n d e k s s y e k t r - n d y e . - e whatever time in the afternoon, after my mother had already gone to sleep herself. I was always tired. When I did make it to school, I’d fall asleep, head on desk, in most classes. I’d stumble off the school bus steps around 3:00 p.M., drop onto the bed or couch or ﬂoor, and wake up around eight or nine or ten the next morning. I sucked down coffee, a taste I hated. I downed energy drinks and energy shots until I shook. Then I bought pure caffeine on the internet to mix into everything I drank. But I still slept en - tire days away. I chalked it up to my workload, at ﬁrst. I had taken ten Advanced placement (Ap) classes and played two sports. My grades had put me at the top of my class in sophomore year, though that class rank plummeted by the end of the next. I had always been academically successful, moving up classes, skipping a grade. even with my sleeping

problems, I would graduate high school at sixteen,

so part of me ﬁgured daily exhaustion was par for this course.

My voice lowered and became monotone, and

my gait slowed. I lost weight, because I ate only once every two or three days, and I wore the same clothes, dusty gray thermals with fat wool socks, for weeks without showering. no one who no - ticed, no teacher, classmate nor coach, neither my mother nor any other family member, ever asked me, “Are you alright?”. no one inquired about my health or suggested I see a doctor. Instead, I heard jokes, rumors, and accusations, even from my mother, that I must be skipping school on purpose.

24 Maybe I just wanted to lounge around all day, suggested my Ap chemistry teacher. Or maybe I was on drugs. I mentioned to my Ap Biology teacher how tired I was. he scoffed, “You’re clearly smoking a lot of weed.” The vice-principal called me down to her ofﬁce to discuss my absences. I explained that I felt tired all the time. She said, “look, I know it’s hard to get up in the morning, but we’re all tired.” When I conﬁded my exhaustion to my mother, she said, “You’re just lazy.” little bits of me still showed up in standard - ized tests, even though my grades tanked. I could cut through a two-hour-long Ap test, even if I couldn’t function for a seven-hour school day. They gave me awards: national Merit Scholar, Ap Scholar with distinction. I had 99th percentile SAT scores. Some schools mailed me offers of full scholarships, despite my grades. I was approached

by faraway schools—Florida State, uc San

diego— and I received a generous offer with a for - eign travel stipend and a free ipad from the

university of Arizona.

I accepted their offer. coming from chillier new jersey, I ﬁgured the sizzling Tucson sun would spark me awake. But at the u of A, my sleep trouble persisted. I overslept entire days of classes. Then I started to wake up nervous. In my dorm room I had little breakdowns, feelings like bones snapping, when I shot up every morning to check the clock. Was it 6:00 a.m., 8:00 a.m., 2:00 p.m.? Would I trudge to class, exhausted enough to cry, or silently hate myself for waking up too

25 late? If I saw something like 6:15 on the clock, my brain zapped itself. I refocused my eyes to see whether it was A.M. or p.M. I couldn’t trust what day’s half I woke up in. Again I showered as if they were rationing water. I bought a burger maybe once every other day as my only food. My classmates, high-achiev - ers in the u of A’s honors college, gave me funny looks and passive-aggressive insults. Angel from down the hall twisted his face and spoke slowly to me, to mock how distant I was, how detached, stu - pid, or high I must have seemed. After my second semester, the university rescinded my scholarship. I failed my favorite class, a senior-level honors psy - chology seminar that my adviser had recom - mended me for as a freshman. My professor wrote me a thousand-word email, describing how “unmo - tivated” I seemed, how my “priorities seemed to be elsewhere”. After I’d had three poor semesters and

a 10-day trip to the psychiatric ward, my mother

bought me a plane ticket back to new jersey. For the next three years, I bounced from thera -

pist to therapist for depression and anxiety. These

people, who were always old, foreign to me, and soft-spoken, laid it out: it’s problem with sero - tonin, obviously, or dopamine. no one mentioned sleeping too much as its own disease, but they were right about the mood disorders. I had gotten into cutting my arm with razors and, after I came back from Arizona, attempted suicide, hanging my - self with a belt until I lost consciousness. Then the belt gave and I woke up, as usual, in a daze.

26 every therapist I met said it must be due to my depression. If I could patch my mental state, then I would smooth over my sleeping problems. however, even in spots where my depression im - proved, when I felt motivated enough to work or return to Arizona, I still averaged almost sixteen hours a day asleep. In january 2014, my primary physician re - ferred me to a new psychiatrist. however, I was certain my problems originated in my sleep, rather than my mental outlook. I had been reading about different kinds of brain problems,including in - juries that could lead to sleeping all the time. So I called my physician’s office and finagled a referral to another specialist, a neurologist. After two ap - pointments, this neurologist, recommended three sleep studies. One of these was a polysomnogra - phy, an overnight sleep study. My mother drove me to the sleep lab. A technician fitted me with

electrodes and a ﬁnger pulse monitor, and ran

through what must have been his usual “It might be hard to sleep in a new place” speech. I zonked

out in their bed before I knew it.

Most adults spend about twenty percent of their sleep in the reM stage, the deepest stage, where most dreaming occurs. The healthy range is seventeen to twenty-three percent. If you wake up during reM sleep and need more, you might enter “reM rebound” next time, where you fall into reM sleep faster than normal. reM rebound is evidence of how biologically important reM sleep is; it’s necessary for cognitive function. My polysomnogram, the charted result of my

27 polysomnography, told me I only spent 4.8 percent of my sleep in the reM stage. My body delayed entering reM sleep for more than three hours after I had fallen asleep. The neurologist suggested that my sleep failed to restore me, as if I were con - stantly sleep deprived even after being out for twelve or more hours. The neurologist and the test - ing physician who ran the polysomnography both agreed with a diagnosis of a rare sleep disorder called “idiopathic hypersomnia”. hypersomnia is sleeping too much, the oppo - site of insomnia, and idiopathic means there is no known cause. Idiopathic hypersomnia has an esti - mated prevalence of one in twenty thousand. remission occurs in about ten to ﬁfteen percent of cases. The hypersomnia remained regardless of the medications I was taking. I had no history of head injury or anything else that might have caused ex - cessive sleeping. There was some strange neurol -

ogy, something interfering with my sleep. But there

was nothing we could ﬁnd as a cause. There’s no FdA-approved treatment, so my

physicians and I went through off-label medica -

tions by the boatload. They prescribed antidepres - sants: citalopram, escitalopram, bupropion. Then there were stimulants: modafinil, armodafinil, and Adderall. I didn’t feel anything from the first two, and the Adderall gave me headaches that felt like little buzzings, or beads of sand whishing around my brain. There was lorazepam, because I also had panic attacks, and levothyroxine, to increase my levels of thyroid hormone, even though my tested levels were within normal range. I contin -

28 ued to see therapists for depression and anxiety, trying to ﬁght the two-fronted battle. I wore down my mental gears more, ﬁghting sleep prob - lems and mood problems, with therapists, psychia - trists, and neurologists. I wanted all the tools, weapons, and resources I could gather. There’s still, on top of my dresser, a sheet of sleep hygiene “tips and tricks”, describing how I should force myself to sleep at certain times, wake up at the same time every morning, and not use my bed for anything other than sleeping or sex. But this was advice for a person whose problem originated in behavior, not neurology. I could sleep at almost any time, anywhere, in cars, or on park benches like a bum. It had been a joke in school that I could sleep standing up, just leaning on walls in the hallway. Waking up at the same time every morning was impossible as far as I could tell, be - cause I had always slept through every alarm

clock. My mother even put ice cubes down my

shirt once to wake me up. She told me later that I had screamed and knocked the ice out my shirt,

and that I screamed so loudly that she would

never wake me up again, not for anything. She’d rather just let me sleep. She still wanted me to be active, however. My single mother had grown up poor and angry in the ghetto, in Atlantic city, and had fended for herself for most of her life. When I asked her for food money, she told me, “don’t come asking me for money. I’m not giving you anything other than a room, and you should be grateful I’m giving you that at all.” So I needed to work for my own

29 money, pay my bills, buy my food. For my part, I also ached to work. I saw being able to work full- time as a measure of functionality. If I could get up, shower, get dressed, and work for eight hours a day, without passing out the second I got home, then I would be healthy enough to return to uni - versity studies. From 2013 to 2016, I took on and lost more jobs than I can remember. I worked for two Walmarts, five pizzerias, a shoe store, a flower shop, a bookstore, a gutter repair contractor, a flag football league, and more. I lost all of these jobs, except one, due to oversleeping. I overslept some shifts entirely. The shoe store manager, who lived nearby, offered to give me a ride to work. On the first day he stopped by, I slept until noon and woke up with five missed calls and seven text mes - sages. he had pulled up to the house, honked his horn, knocked, called, and texted me on my un - muted, full-volume phone. I snoozed through the

whole thing.

I tried to mitigate my shame by being obsessive about the time I spent asleep. I recorded every

hour I spend in any activity on an excel spread -

sheet. I recorded the times I fell asleep and woke up, in an effort to keep them consistent. I wrote down times on sticky notes, and later typed them in excel. I recorded the times I spent working or looking for work, reading and studying, going to the gym, and so on. Sleep dominated, with an aver - age of 13.9 hours a day spent asleep. After three months with no change, I slipped into another stay-at-home depression.

30 My mother berated me, in some way she thought was galvanizing, about how “worthless” and “useless” I was becoming. When that effort failed, she kicked me out the house, an attempt at “tough love”, to motivate me into keeping a job. I spent four months on friends’ couches, then the county homeless shelter, then the psych ward again, before my mother took me back in. I was crippled, non-functional. I spun into a mental cycle of fear, embarrassment, anger, and self-loathing over both my inability to do any - thing and the abandonment I felt from people I had believed were my support. My mother, I fig - ured, only kept me because she was obliged. She gave me a room, because she couldn’t have peo - ple calling her a terrible person if I wound up homeless again. Then my hypersomnia went away. I don’t have an explanation of how it improved. I didn’t

change my diet or start taking a miracle plant ex -

tract. I just started sleeping less. I remember the first week I spent sleeping

fewer than ten hours every day. It was the last

week of April, 2017. On May 2, I slept nine hours, a cool nine, like a normal person, not twelve or sixteen or twenty. Then on May 3, I slept eight hours. When I woke up, I felt fine, not tired, not dazed, not in a weird stupor like before, where I’d be falling over if I managed to wake up with this little sleep. That afternoon, I realized something was up, and I started jotting down my hours again.

31 It was just sleep, but that week I was on a roll. every night gave me a restful eight or nine hours, without an alarm, without any drugs. And when I did set an alarm, it actually woke me. Then a week of normal sleep spun into a month. That summer, I found a job working at a local tennis center, at - tending to the courts and teaching tennis (I had played the sport competitively). I was late to work a few times, but I never had a problem with stay - ing awake or with oversleeping entire days. My improved sleep transformed my health. I took care of the normal things, showered, and ate at regular times. I gained healthy weight. I stopped having panic attacks. My hypersomnia diminished spontaneously. It was a downright miracle. now I’m 23, picking up my life where I dropped it at 19. My social network died: no one has kept in touch with me from high school or from Arizona. My frozen academic life is thawing

out through community college classes.

My old depression has left, but now a new one comes when I think of how many people judged

me as being stupid or lazy or drugged out. If I had

not been my own advocate, and insisted on seeing a neurologist who brought up sleep studies, I have little doubt I would have ended my life. The an - guish of being teased at school and reviled by my mother, the lack of support I needed at such a vul - nerable time was closer to killing me than hyper - somnia ever had. And though I’m still getting along, working and studying, something has left me. The people closest to me accused me of being a lazy, stupid person who probably smokes a lot of

32 weed, with the same blind, mobbing ostracism as if they had accused me of committing a robbery. Because of that, I lost a trust in people in the same manner as a person wrongfully convicted of a crime. I might sleep well now, but I think I’d feel most rested if I could ever ﬁnd people to rebuild that trust.

James K. A. Stevens is a student at Atlantic cape community college in Mays landing, new jersey. he is writing a book about his hyper - somnia. email: jamesKAStevens @gmail.com

V o I l 2 s u s 3 0 u m 4 1 e e 8

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b e t o , d c s u l s e u t b o a a o e

? i b n o

t t B

u m a g n b r y l y o s o

u e i D e e o r e s r o e l O t l g b

p f

f d

n d a e

i e b u b y s n e

n s d l o s s t t

n o l l g e c

l e o n o

t s h i s a

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r ’ l h h u l i , i s t n t e

e r g w e e

e g e i n

I r

s a a

s n o a w e b R h t t h n g M

M A n a n d r o e s c k e i e b e s v i g

h n

p h

g s 9 , n d y o o a p r e s g a

s i h 0 o e g t u c l n n r n d u t e e o u a r

n e i r r

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t c . n s f e e

e o i e u

o R g n s

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d w o f w d

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H i , s s y h n n r e o i

d i l … u s e

R t D o i g e h a t t h

B e d Can you take it with you or can you once again defy death by Marinating in good wine? Is good wine better than the IV line Dripping out what’s left of the Running out and down of Time?

Anne Rose is a poetry lover, writing from Central ontario. Email: [email protected]

V o I l 2 s u s 3 0 u m 6 1 e e 8

b F s a t w Y c s w k i t p T c w t f c t h i a e t e h a u n a l n i

n o h r i e d i m a n r t e u e m t p

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n i o l h p s s s T s N ﬂ e o

i k w

r e t b e k

r t s l

s , t r , o

h u c i w

s s a a w

e h ,

c e

a r t .

. a f t w t e s s t x n

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g .

d t e e c

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ﬂ

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s i Y t e e

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m u o c s h l v

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e u i e e o v i e k m h l n u e I n s e o n r u

H e r t t

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f k

v g

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e s

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n l f o

f y a e i

l o i

n Y r n e e

a n s M m i d b u r e i l i b h s t

u o d t l o k b a l t m a f r a t - l s

e l o a y r

e b

u w i y i

s l

a n

k r

B n s n n o i p t n

c f w . s a e

i g t g

e u i h c t o . i f g e o

D e f n r l l g

e m

a w i

f l h m o f l s

a I t s o l f i s

r i

o y r n o t

g a e , b r e a v

e o u l l

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i o n o t

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t h e w v e n d e r t l , H f

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r f e n

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e a w h

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C l o i s n i

d i

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t w t h t e c v u

t a i t i e

n i e k s o n u e w a a n l t n

i : o f l d

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d a

p r

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a e o u r

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d h r e f t o n b l s a u r e

o u l

o t e t r

a h h s p

d a n l l

a o ,

h e , w u r

h i w y

n s e o

i g t . d i s k e n a

a t n o r t o

d m o c . e x

e f h v e

g k f u w w k , o a o R m m u

r i

e e o p

b n i k r f o n o a o i d e o t n o u e f e t f e g n o m r r c s

e n t , - i 5 t l r r i a e k

h n l l s n

s o

b e t s y 7 n i i

t u h n g - s s o t u h . d - . c s g f t e . - sembles muscle, and you will cut into it under con - stant threat of severing arteries. Your cadaver will remain indifferent as you unwittingly remove the entirety of the main coronary blood supply. During teaching sessions on this subject, you will sheep - ishly bring forward a plastic model, admitting the ignorance to which your cadaver bears witness. You have lost to your cadaver, and should learn to be more humble. There is so much you don’t know. During the lung dissection, you will consult an old anatomy textbook flecked with dried pieces of flesh from its lifetime of use in the cadaver lab. Your cadaver will reward you with pulmonary vessels shaped exactly like the pictures; you are learning. Admire how the lungs fit snugly into the chest, and for a second, let yourself feel a strange pride in the size of your cadaver’s heart. Think about what once made that heart race, and consider how similar that heart must be to your own. Try to entertain these

thoughts for only a moment, but be warned that

they will pervade. During the evenings you spend at home with your head on your partner’s chest, you

will no longer hear his heartbeats as reassuring.

Instead, each one will be a reminder that the only thing between life and death is the absence of this sound. The abdominal dissection will reveal your ca - daver’s deepest secret, disclosed only to you and the surgeons who left those stitches in the abdominal wall. The tumors clustered around the vessels, intestines, and liver will be so large in number and size that they make identifying structures near impossible. The sticker on the table will impassively remind you that 37 the cause of death was pancreatic cancer. You will be the only one surprised by what you see. With every structure found to be obscured by tumours, you will silently curse your luck and look on with jealousy at the others at their tables, easily locating gallbladders in the cadavers of those who died of heart disease. each of these thoughts are accompanied by guilt. Who are you to judge what qualiﬁes as a good death? The hours you spend painstakingly separating metastases will be your penance for not appreciating the gift your cadaver has given you. When you come to the pancreas it - self, look for a tortured and enlarged organ, rid - dled with growths and partially eroding into the main abdominal artery. Appreciate that your ca - daver could not survive this, and it was these very tumors that took your cadaver’s life. If you feel overwhelmed by the burden of mortality at this point, take a break and go outside. call your fa -

ther, who is your cadaver’s stated age. Tell him you

love him, and that everything is ﬁne, but will he please stop smoking? Then go back inside.

leave those tumors intact and recognize what

is really meant by the caution “treat cadavers with respect.” Your cadaver has fought and lost more than you ever have. To remove those tumors would do a disservice to this battle, even if your students will gripe about missed learning opportu - nities and seek out other cadavers to learn from. highlight the mass on the pancreas and use this chance to remind students of the mortality rates of pancreatic cancer. privately, think about how you would feel if your death was equated to a statisti -

38 cal fact, but suppress the urge to apologize to your cadaver out loud. leave the face for last, to ensure you have suffi - cient skill to remove facial skin and tissue without damaging the delicate web of vessels and nerves that runs right underneath them. You will not think you have this skill, but do it anyway. Feeling nervous as you dissect the face is entirely natural. Remove the plastic wrap and cloth to reveal a kind, albeit sunken, face. observe the strong jaw - line and cloudy blue eyes, and don’t be surprised if you feel stubble when you put your hand against the chin. Do this final dissection with care, and note how easy it is to be alone with your cadaver. The violent colors of muscle and blood will have softened, and you may forget how many hours you have been in the lab. If you find a tattoo be - hind the ear, smudged little initials of someone’s name, let yourself imagine that special someone

putting their arms around your cadaver’s neck.

Appreciate, ﬁnally, that your cadaver has not al - ways been yours, but more importantly, has not al -

ways been a cadaver. You might feel overwhelmed

by the realization that your cadaver was a person, whose heart once beat as yours does now, who de - cided to give their body so you could learn. You will not be able to comprehend what went into making this decision, but it is a good exercise to try. carry this realization into the remainder of your dissection, and do not be embarrassed to feel concern for what will happen to your cadaver as the term comes to an end.

39 on your last day, look closely at all the wounds you have inflicted, and give silent thanks to your cadaver for absorbing them without com - plaint. Wrap the hands and feet with damp cloth to prevent the structures from drying out in stor - age, and smooth disinfectant on all the muscles you have exposed. Acknowledge how much you have learned, and recognize that the cost of this ed - ucation was a life. You are now finished. If you feel a pang of sadness as you zip up the body bag for the final time, you will know that you have be - friended a cadaver.

Maggie Hulbert is a third-year medical student at Queen’s university. she can be reached at [email protected]

V o I l 2 s u s 4 0 u m 1 1 e e 8

c b i w a g b s t b T l a c F t l o p s p i o s o o i l a o n d o k o n i i e u r z h

i h n n n

t a g e m d d v i e e x

t s t r a i n g h k g a

h T a d

a o

t ﬁ c s l a e i p

t g e

e l t o m n . n h a b u h o a r h ” s k n l r

l g e c y f

i e e n a g

e l

p b M n t E d v , e t

i a n

n g h d

e a a t o n l l a d t a ﬂ

v c e t

r o d u o

n n o k a a p

y c n c

a o e

s n

r u s s t d i

s k e r e

e n i m g o r n g s h t h o t

t g y s s

a a r e

e y

h o h s e t

s e f - l t b T h a l p . x g u o a

f h o m t t

’ a s h i w e y e o d I e

t h t s n h

t e r d i

r i r r a m

e s

. , r

n i y c

d c e e a

c a

r n n m g H a u e l a e —

r o

l s , e

s i s P o F g

d o x e n f h s r

f K

f s i h e t t e w

u e a t e

n o

s d a e q

l h t r m t m o r i , s e b a i s a a o i

e u e f k e s

d w m

r c i s

l r d u n u n o r I e

r e l

e c k u i h

h e y t t

m h s

n e e f y

e O s o . i n a m a

a f e

k o s z

i o n n i

e o t e S A t s

r a r t e ,

i s s w s ’ m t

e r r n e t y

n h

C m

p m k

o h s o u o a e o m , , t t

o g

. i h n n d n e h o s p n w c f f a

e y t

T o i

a o A t i a

a e c n s o a t n z i

t s t

r n d l t y a m l h w h l o o n r h e p d P l u l

y e

n i

- e i h e d w e n f e e l

t e k n t r s i e s

a m

h n h l u o

g e e c i h

p e n D t a l e l i y z o r c

e g r n

g f u t

o e y d l o . f e P e

A e a t u n y

y g o n r t

A t d g i s

t w e e b i a h t t f

h o l

r h r g . n e

w g

o o

s u i l

e a a

o o n a

S a

a e g e

g i m n n c

o n t n o a n r u f , h t . v n b y

t d r a

h s e m e H e t e e ’ o g

t e e s e h

a r

e a h i “ s t

r t d c

i s a

y y e r e

h r t p i

s c ﬂ

e p h e l n m a r

a h a

, e A c d e r o m s i c u p o

n s d s n r

n l I s , e a a w h v a r o e

s d f

. d w n y l s u o p o a n t t

o e u e , . h t h t m k n i p d e r

v - e r t t I e e s , a - a y h r e t e , s k s l d and slow, and mine, way too fast. I will myself to stay calm, so I inhale. All around us is a dense, sweet smell, the telltale scent of the dying. A lifelong smoker, Aunt Peggy wore perfume in part to mask the smell of cigarette smoke, that other smell that I always associated with her. unlike her wanton taste in perfume, she was a loy - alist when it came to cigarettes ; only Virginia Slim menthols, famous for the “You’ve come a long Way, Baby” slogan, would do. My aunt had started smoking as a teenager in the 1960s, back when it seemed sexy and cool. She was deﬁnitely sexy and cool, but the cigarettes only enhanced those qualities. They didn’t create them. In one of my favorite photos of her from that time, she is wearing pedal pushers and patent leather heels, her hair done up in a bouffant and her lips painted bright red, with a cigarette held aloft in her ele - gant, manicured hand.

By the 1980s, my aunt was a middle-aged, child -

less divorcée with a two-pack-a-day habit. Accord- ingly, her voice had taken on a gravelly timbre that

somehow matched her brassy, fun demeanor. My

parents had divorced by then, with my father awarded sole custody. Straining under a high-pow - ered government job, he invited my aunt—his only sibling—to help take care of my younger brother and me, offering her a room in our house, a weekly stipend, and a built-in family. In her free time, she sold encyclopedias door-to-door. She became fast friends with the local Avon lady, and they would light up together in my father’s kitchen, poring over makeup and perfume samples.

42 We made room for both my aunt’s perfume bottles and her cigarettes in our lives. My aunt loved to dance around the house singing songs. The Everly Brothers’ “Bye Bye love” was one of her favourites. She would sing, “ Bye bye love … bye bye happiness … ,” ﬂinging ash on our carpet. She once burned my forearm with a cigarette as she swung me around, horrifying my father. I rubbed some cold water on it. What was a little burn when there was dancing to be done? My aunt was awfully partisan when it came to my brother and me. When my dad wasn’t looking, she would sneak me cans of soda and bags of doritos. later, when I lost my virginity, she was the ﬁrst person I told. Her eyes widened, but when I begged her not to tell my father, she agreed. She was not my mother; she was my accomplice. When I met the man who would become my husband, she bought me my wedding dress. When I walked

down the aisle, I could smell her perfume before I

could actually see her, and when I did, she had tears in her eyes.

A few years ago, when we found my father

dead of a heart attack on his living room ﬂoor, my aunt helped make all the arrangements, negotiat - ing with the funeral home like the tough-cookie saleswoman she was. She smoked a lot of ciga - rettes then. There was a time in my know-it-all twenties when I tried to get her to quit. In fact, I was down - right judgmental about her smoking habit, sending her preachy cards and emails. I asked her to smoke outside my house, even when it was unbearably

43 hot or cold. I wrinkled up my nose when she gave me a birthday gift and a smoky odor wafted up from the tissue paper. I wasn’t always very nice. In those moments, I told myself that I had her best in - terests at heart. now I realize that I really only had mine. I wanted her to stay with me, and for our lives to remain as they were, full of perfume and dancing. She knew before I did that that was impossible. As the years went on, Aunt Peggy’s voice grew hoarser; her breathing raspy and strained. She began to have bouts of coughing and confusion. After she’d fainted getting out of bed one morning, she finally visited the doctor, who confirmed our worst fears—Stage 4 lung cancer, with a poor prognosis. “That’s what I get for fifty years of smoking,” Aunt Peggy said matter-of-factly, with - out tears or self-recrimination. She began chemotherapy. When her hair fell out, she bought

pert wigs (“I have brown hair again!”) and

spritzed cologne on the diaphanous scarves she tied around her head. She wore her trademark red

lipstick to her chemo appointments. She lived one

day at a time, the way we all ought to live and al - most never do. She kept smoking. one day, a brain scan revealed a large mass. The oncologist immediately ordered a round of ra - diation, but I heard the tone of last resort in her voice. Eventually, our options ran out. And so I sit in this hospital room, surrounded by the perfume of the dying. I have heard that our bodies have myriad ways of informing us when or - gans are shutting down, and this peculiar scent is

44 one of them. It has been described on medical fo - rums as a “sickly, fruity smell” and is often associ - ated with lung and other cancers. Physicians going back to Hippocrates have made the link between disease and certain odours, and so none of the medical staff attending to my aunt seem concerned about the strange smell. What’s surprising is that I’m not bothered either. It reminds me of hiking through apple orchards in Pennsylvania in the fall, when they are thick with the scent of fallen apples, often split open by opportunistic animals and left to ferment in the sun. My aunt falls into a sleep from which I know she will never wake. I notice her purse, sticking out of a half-open drawer. I lift it out, carefully, and unzip it quietly. The purse contains a single, small bottle of perfume— Sung for Women . I take off the cap and inhale, catching citrus and ﬂoral notes and musky undertones. I desperately want to

spray the perfume on my aunt’s thin wrists. I long

to paint her pale lips red and offer her a cigarette. I wish she would dance and sing. Bye bye love …

bye bye happiness … .

Instead, I take her translucent hand in mine. I try to thank her without actually saying the words, Kim O’Connell is a writer based in Arlington, because that feels too ﬁnal, but I believe she Virginia, whose work has knows. Her breath slows. I inhale the strange per - appeared in newspapers fume, this last, intimate expression of her human - and journals. She is also ity. The scent lingers long after she’s gone, and in a professor in the science writing program at johns this one vital, glorious way, nothing has changed. Hopkins university. Email: kim@ greenquill.com

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V o I l 2 s u s 4 0 u m 7 1 e e 8

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k a e e e i i 4 n n d y y t ? f s s : d t . l r , . e i h g l - t e t his “unrelenting atheism and pessimism” (Vendler, 2014, p.20), especially as revealed in his posthu - mously published letters. “Myxomatosis” is an early poem, written in 1954 when Larkin was 31 years old. It displays the more amenable side of Larkin’s complex personality, and its sentiments conform to the elements of his biography that are easiest to embrace. It also touches on themes that are of great interest to anyone who believes that the practice of medicine might absorb lessons of value from the poetic sensibility. In middle-age, Larkin wrote a never-published autobiographical fragment in which he recalled the “dominant emotions” of his childhood to be “overwhelmingly, fear and boredom” (Motion, 1993, p. 13). The atmosphere of the parental home he remembered as both “drab” and “intimidating.” one result of these fraught human connections seems to have been a deep regard for animals, with

a special place reserved for the most hapless speci -

mens. When Larkin began to publish novels and poems, ultimately achieving considerable distinc -

tion, his perplexity over relationships and his con -

cern for animal suffering were preserved in equal measure. It is likely that this concern for neglected or damaged animals hid an element of perceived psychological kinship. Larkin never married or had children. Bald and bespectacled, some might have considered him plain (among them, the po - etry critic Helen Vendler (2014), who writes of his “lack of good looks” (p. 20) as if it were a biogra - phical detail as ﬁxable as his birthplace. unsurpris- ingly, then, when animals entered his poems, it was

48 on a note of commiseration. “The Mower,” for ex - ample, was written after a lethal encounter be - tween Larkin’s lawn mower and a hedgehog he had been supporting with table scraps. “[Philip] came in from the garden howling,” Monica Jones, his long-time (and long- suffering) lover recalled (Motion, 1993, p. 475). In the poem “Ape experiment room,” Larkin characterized vivisec - tion with a palpable shudder as “putting questions to ﬂesh” (Larkin, 1988, p. 160). rabbits were an especially privileged species in Larkin’s universe. He admired Beatrix Potter, the author of the Peter rabbit books, and referred to the devoted Monica as Bun (short for Bunny rabbit), addressing scores of letters to her in what his biographer calls a “private language of rabbit- tenderness” (Motion, 1993, p. 459). growing up in the english Midlands, Larkin would have been ac -

customed to sightings of feral rabbits, whose number

circa 1950 has been put at 100 million (Sheail, 1971,

p. n202). Despite their cuddly appeal to children, in rural England rabbits were widely regarded as pests.

Myxomatosis was written in response to an effort to

exterminate the rabbit population wholesale by expos - ing it to the myxoma virus, a pathogen previously un - known in Europe. The ensuing controversy is of interest for the light it throws on the constituencies then asserting themselves—farmers, furriers, sports - men, lovers of animals and lovers of meat (meat in that post-war period was still rationed) all in con - tention. But for admirers of Larkin’s verse, the contro - versy is also of interest. It led, in Myxomatosis , to what is perhaps an inadvertent exercise in soul-baring 49 that can be better understood with a bit of historical and biological background. In 1896, a uruguayan research laboratory dis - covered that a mysterious febrile contagion had gripped a dozen or so rabbits previously imported from europe, killing all of them within weeks (Kerr, 2012). The course of the illness was grimly predictable. Tumors of the skin and underlying connective tissue (called myxomas, after the greek word for mucus), with an ugly predilection for the head and genitals, were its earliest manifestation. Within days, the flesh became swollen and empur - pled. The skin bulged grotesquely, as if the rabbits were being misshapenly inflated with air. fever, anorexia, and lethargy then followed, leaving the animals stupefied and inert. These symptoms were accompanied by a purulent ocular discharge and marked engorgement of the eyelids. The animals were then helpless. opportunistic bacterial infec -

tions—typically pneumonia—mercifully took root

as the end approached. When death did come— and it came in every instance—the animals were al -

most always blind.

Later experiments established several key facts. The source of the rabbits’ illness was shown to be a pox virus (a Leporipoxvirus of the Poxviridae family) usually transmitted by blood-sucking in - sects such as ﬂeas and mosquitos (Villafuerte et al., 2017). The myxoma virus, like the serial murderer in a generic thriller, was found to choose its vic - tims fastidiously, striking down only one species of rabbit—oryctolagus cuniculus—and an occasional hare. squirrels, ferrets, and guinea pigs were unaf -

50 fected (Chaproniere & Andrewes, 1957). More in - triguingly, myxomatosis could not be induced in human subjects. When study volunteers were in - jected with tissue from moribund rabbits, they emerged unscathed (Hobbs, 1928). seeing one’s volunteers in robust good health after being in - jected with a virulent pathogen naturally closes the book on one publishable line of research. It is the kind of result an ambitious investigator greets with mixed feelings. The story then leaps forward to 1952, when Paul delille, a retired physician living in france, weary of the despoliation of his carefully tended cultivars, injected a suspension of myxovirus into a rabbit and released it onto his estate. european rabbits, having had no prior exposure to the virus, lacked any resistance to it, and mortality was 100 percent (fenner & Marshall, 1957). Less than a year later, on the other side of the english Channel,

a few dead rabbits were discovered on a farm in

Kent. The infection then spread exponentially, abetted by “rabbit destruction squads” composed

of British farmers who viewed wild rabbits as a

pestilential swarm of Biblical proportions. opposing the farmers were “mercy squads” that roamed the countryside putting stricken rabbits out of their misery. The sight of dying rabbits— starving, disﬁgured, and blind—grew familiar to tender-hearted British citizens who, after a child - hood spent in the company of Peter rabbit, viewed with alarm the disappearance of his real- life cousins from a large swath of rural england (Bartrip, 2008).

51 Larkin’s Myxomatosis memorializes the poet’s encounter with one dying rabbit. Like a medical practitioner caring for a close family member, the poet vacillates between professional detachment and horriﬁed identiﬁcation with the object of his ministrations. The affectless title of the poem could serve as the chapter heading of a textbook. But prodded by the grisly image before him, the emotional current in the poet rises. He imagines— in fact shares—the experience of being caught in an invisible snare. The interminable hours, “hot” and “inexplicable,” refer to the animal’s fever. But they could apply as well to the fury and consterna - tion of the poet as his nature walk is transformed into a dantean passage through a limbo of crip - pled innocents. The word “suppurate,” with its Latinate and clinical associations, signals another poetic volte- face —a return to the anaesthetizing distance avail -

able to the poet at the start. In this moment of re -

stored equanimity, the poet delivers his bloody coup de grâce : “I make a sharp reply, then clean

my stick.” The language is spare—no mention of

the unavoidable spattering—and by allowing the reader to conjure his own image, the effect is mul - tiplied, disquietingly so. The decisive mindset that brings the stick down upon the stricken rabbit does not last very long, however. The poem closes by restoring the pathos of a sickened creature in torment—the tor - ment not of physical pain, but of anticipated ex - tinction. It is the same anguish evoked so bril- liantly in Larkin’s “Aubade,” where it is also pro -

52 voked by the specter of death, “the anesthetic from which none come round” (Larkin, 2003, p. 190). Caught in extremis, Larkin’s rabbit is revealed to be a mid-twentieth century Christian of lapsed faith, aspiring to salvation, but knowing that merely to “keep quite still and wait” is hopeless. Things will “come right again” to be sure. And it will be in the form of a ﬁnal, annihilating blow from above. That Larkin should look upon a wild rabbit in its death throes as a fellow sufferer of existential dread illustrates the distinction, so often blurred, between empathy and sympathy, two responses that are not only divergent but can lead to oppo - site results. sympathy is closely allied to compas - sion and kindness. It calls forth feelings of tenderness and the wish to protect its object from harm. empathy is, in contrast, an involuntary, in - ward-turning process that recreates in the observer

the suffering witnessed in others. Yale psychologist

Paul Bloom deﬁnes empathy as a capacity “ to ex - perience the world as you think someone else does”

(Bloom, 2017, p. 16) . This closely follows the great

primatologist frans de Waal, who called empathy “the ability to be affected by the state of another … creature” (de Waal, 2005, p. 184). nothing in ei - ther deﬁnition leads one a priori to believe that em - pathy results in a charitable or moral impulse. Indeed, empathy with members of our own tribe may encourage murderous resentment for anyone outside it. But if empathy is ultimately an internal matter—if unlike sympathy, it is an unsought state of private distress—there is a possible outcome

53 that is even worse than violence against tribal ene - mies. empathy might actually give rise to violence against the creature provoking it. once that possibility is raised, Myxomatosis can be seen in a new light, one that produces an off-putting sense that the dying rabbit of the poem is oddly dispensable. If it is true that the poem is offered as a protest against animal abuse, it is also true that it is offered without the faintest breath of tenderness. “I clean my stick” cannot strike the rabbit-lover as a terribly fitting epitaph. But then Larkin, while he was sometimes maudlin, was not a very tender-hearted man. A poet who fills his let - ters with expressions of contempt for women and inferior races, and yet recoils howling when his mower strikes a hedgehog, has perhaps confused love of animals with love that finds its true object closer to home. It is precisely in that confusion—that intermin -

gling of unworthy motives with charitable ones—

that the problem with empathy lies, for unlike sympathy, empathy is inseparable from self-regard.

Myxomatosis is a very good poem, and it is terri -

bly moving in its way, but who does not perceive that it is first and last a poem about Larkin? The dying rabbit is a morbid figment, its corpse a simu - lacrum constructed from the poet’s dread of illness and death. This is because the essential nature of empathy is to turn our thoughts from the suffering of others to the torment it produces in ourselves . But if this is true of empathy, what hazard is cre - ated for the empathic medical professional who must absorb the horror of human affliction daily?

54 How much of the case for mercy killing, for exam - ple, disguises a wish to dispatch the patient and put an end to a misery that must otherwise be shared? And what is true in medicine is true else - where. If empathy turns the suffering of others into a source of personal anguish, how tempting to seek relief, as the poet does, by extinguishing the source. And perceiving clearly that temptation, how tragically but singularly human seem the all- too-familiar stories, both in art and in life, of men and women who kill the thing they love.

References Bartrip, P.W.J. (2008). Myxomatosis in 1950s Britain. Twentieth Century British History. 19 (1), 83–105. Bloom, Paul. (2017). Against Empathy: The Case for Rational Compassion . London: random House. Booth, James. (2014). Philip Larkin: Life, Art and Love . London, england: Bloomsbury. Chaproniere, d.M. & Andrewes, C.H. (1957). Cultivation of rabbit myxoma and ﬁbroma viruses in non-susceptible hosts. Virology ,

4(2), 351 –365.

de Waal, frans. (2005) Our Inner Ape: A Leading Primatologist Explains Why We Are Who We Are. new York, nY: The Berkley Publishing group.

fenner, f. & Marshall, I.d. (1957). A comparison of the virulence for

european rabbits ( Oryctolagus cuniculus ) of strains of Myxoma virus recovered in the ﬁeld in Australia, europe and America . Journal of Hygiene , 55 (2), 149-191. Hobbs, J.r. (1928). studies on the nature of the infectious myxoma virus of rabbits. American Journal of Epidemiology, 8 (5), 800 –839. Kerr, P.J. (2012). Myxomatosis in Australia and europe: A model for emerging infectious disease. Antiviral Research , 93 (3), 387 –415. Larkin, Philip. (1988). Collected Poems . London: faber and faber. Larkin, Philip. (2003). Collected Poems . new York: nY: farrar, straus giroux. Motion, Andrew. (1993). Philip Larkin: A Writer’s Life . new York, nY: farrar straus giroux . raban, Jonathan. (1987). Coasting: A Private Voyage . London: Picador.

55 sheail, John. (1971). Rabbits and their History . exeter: david and Charles. Vendler, Helen. (2014). Why aren’t they screaming? London Review of Books , 36 (21) , 18–22. Villafuerte, r., Castro, f., ramirez, e., Cotilla, I., Parra, f., delibes- Mateos, M., recuerda, P., & rouco, C. (2017). Large-scale as - sessment of myxomatosis prevalence in european wild rabbits (oryctolagus cuniculus) 60 years after ﬁrst outbreak in spain. Research in Veterinary Science , 114 (oct), 281–286.

Michael Shulman is a Canadian physician with a Phd in clinical psychol - ogy. He resides in Bucks County, PA, and is the father of three physician daughters. email: mdshulman89 @gmail.com

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d - a l n d b u b n t t y i a n - g o i r u m s - y e , d o l . - given the choice between ventilator dependence and transfer to inpatient hospice with removal of the BiPAP and impending death, he chose the latter. By the time our paths crossed during my hos - pice and palliative care fellowship, Lon was barely able to speak due to the mask constantly present on his face, in addition to the weakening of his vocal cords. Yet I could imagine his voice as strong and deep. I could see him holding court in a board - room or at the head of a dinner table, wearing a blazer and loosened tie, even though I had seen him only in a hospital gown. “Harris tweed,” he wrote on a dry erase board by way of greeting when one of my colleagues entered his room wear - ing exactly that. Lon had little patience for the process of dying; while he clearly cherished time with his wife and adult children, who set up camp in his room and stocked every corner with snacks, beverages, lap -

tops, even a printer, he asked me every day how

much time he had left. And every day I told him that I didn’t know.

Lon, it turned out, was able to tolerate around-

the-clock BiPAP surprisingly well. When the skin on the bridge of his nose grew raw, he tried a dif - ferent mask that relieved the pressure to his nose and also allowed his glasses to perch on his face so that he could read notes from friends and peruse the daily paper. And so Lon simply went on living. I learned from the ﬁrst time I entered his room that Lon could communicate only via messages written on dry erase boards. Meniere’s disease had damaged his hearing even before the ALS wreaked

60 havoc on his central nerves and impaired his speech. He grew irritated when others conversed around him without transcribing their discussions so that he might follow and take part. the day that I met him, I scrawled a feeble-seeming “Hi” on the board that his family handed me, followed by my name. “I’m going to be your doctor,” I wrote, then turned to him for a cue, unsure just how we might proceed. I needn’t have worried; Lon took it from there. We grew acquainted. I learned tidbits of his Irish catholic upbringing and found that we shared a love of poetry. He distributed copies of a salty lim - erick to each member of the staff. It might have been crude, but for the fact that each was adorned with a personalized message of thanks. Mine read: “doc, thanks for always being honest.” It truly was the only thing I could offer. He had little in the way of emotional or spiritual symp -

toms, other than an honest curiosity about what

the future would hold. I talked and wrote through the pathophysiology of the disease with Lon and

his family, explaining as clearly as I could that his

muscles, especially his diaphragm, would continue to weaken, impeding ventilation, and that carbon dioxide would once again build up in his brain. It would happen despite the use of BiPAP, I told them, though I couldn’t predict how quickly. the only way to truly keep it at bay would be to initi - ate invasive ventilation via tracheostomy, which Lon adamantly refused. So we focused on the things that he could do and enjoy. once he learned that taking nutrition

61 through his feeding tube would be unlikely to alter the course of his disease, he had no desire to use it. With no significant appetite, and understanding his risk of aspiration, Lon chose instead to take sips of the beverages whose tastes brought him some joy. coffee: as hot as possible. Smoothies: al - ways mango, always cold. He took visits from family and friends, and during long “talks” with his wife and children, expressed sentiments that they captured by taking photographs of the dry erase boards, preserving his words written in his own hand. though he usually greeted me with a list of prepared questions, on some days he seemed to have nothing further to discuss. “go take care of someone who needs you, doc,” he wrote one morning with a smile, waving me away. “I’m fine.” Had he been asked a year or even a month be - fore we met how he would like to spend his final

days, I doubt that Lon would have described sit -

ting in bed tethered to a BiPAP machine, communi - cating with his family by scrawling his every

thought and need with a dry erase marker. It

hardly sounds like what most of us would call a good death. But, then, what is a good death? I confess that I entered my fellowship training with the belief that a good death required a code status of dnr/dnI, cessation of all cure-directed treat - ments, and a sole focus on management of pain and spiritual and emotional symptoms. I can now appreciate the naïvet é—and, frankly, the paternalism—of my earlier beliefs. A good

62 death, I have learned, is one in which the circum - stances adhere as closely as possible to the pa - tient’s wishes and goals at that time, whatever they might be. While not all wishes can be brought to fruition, the actions and interventions taken by a family and medical team can and should be in - formed by the patient’s desires, even if the ultimate outcome cannot match what the patient hopes for. I cared for one young boy who declined precipi - tously after his cancer metastasized and though his parents would have preferred to have him at home, they felt unable to manage the caregiving that would have entailed. the team outﬁtted his hospi - tal room to mimic the comforts of home, replacing the plain hospital linens with plush bedding pat - terned with his favorite cartoon characters and adding posters, matching pajamas, and a few toys. Another patient chose to continue receiving inten - sive inpatient chemotherapy for her widespread

disease but put a dnr/dnI order in place because

she wanted to avoid transfer to the Icu and inva - sive, potentially painful, interventions. By contrast,

many of my patients have continued to seek cure-

oriented therapies and have maintained a status of “full code” even in the face of illnesses that cannot be cured. If a patient truly understands that there is a slim likelihood of recovery, but still prioritizes extending his or her life by every possible minute and knowing that every available intervention has been tried, that, too, can be a good death. these goals can shift as a disease progresses, as symptoms change, or as patients’ understandings of, or feelings about, their illnesses evolve. the

63 chance to help patients identify what is most im - portant to them and to engage as a team in devel - oping a plan of care consistent with these wishes—even if they are the polar opposite of what I value and would choose for myself—is one of the distinct honors of working in hospice and palliative care. My goal remains to help provide, to the best of my ability, a good death for every pa - tient. only now I recognize that a good death can take many forms. the day eventually arrived when Lon’s hand - writing began to grow sloppy. In his list of daily questions, inquiries appeared that didn’t make sense and that he couldn’t explain further when one of us drew a question mark in the margins. “Is it the carbon dioxide?” his children asked guardedly and I nodded. they whispered, but he seemed unperturbed by the conversation taking place around him. this was the progression we had

expected to see, only we hadn’t known when it

would start and still had no idea how long it would take. We had talked, for a time, about discharging

him from the inpatient facility to receive hospice

care at home or in a nursing facility, but it was be - coming clear that Lon’s time was growing short. gradually, Lon grew less and less alert and spent more of each day asleep. His pain didn’t in - crease, but he, who had once—even in these dire circumstances—been a robust and notable pres - ence, began to wilt away. He used the dry erase boards less, and was not as irritable when people had conversations without translating their spoken words into writing. And while his family contin -

64 ued to grieve, they also felt great relief that the in - patient hospice facility was where he would stay. Lon passed away in the early morning hours of St. Patrick’s day with his family by his side. When I arrived later that morning, the funeral home had already collected his remains and his family had packed away all of his belongings and the accou - trements that had made his room feel so much like a home. In their wake, they left a note of gratitude thanking us for the care that Lon had received. It was written, most ﬁttingly, on a dry erase board.

rebecca Macdonell- Yilmaz is a physician liv - ing in rhode Island with her husband and two sons. She is currently training in pediatric hematology/oncology. email: rmacdonellyilmaz @gmail.com

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t k

o b e w p o

d r r a g u b

r a m

n t n i e n

o s v h

i f z u i n h h n d l

e o

t e e e r u e z i

s e s s b n i e

h i w s e

r r u e n i . s J

t s W e o r t e i

u e t n n

m e o l e B

a o a f , t e p m e

d n o .

d g f h o n t e f s t d y i

i y c

o h c s r e i a f d n m

n e

e k l

c o

p y t g f m h d g b a e h e . s

, r

t v , r e e o o c g C t i

e s

l l n n l m s p o e r l o T h k i o o n n i r a s a t e u t e

o c s R n h a g B o l y n h r u e l t a e n a

y o

c e t s z w w r

e o i d

l i o P n n c

n n i

h h H n e g m r e

i s e s

o g t s j , t s e i

u r f t n t

4 e h s e t d e t t 3 s a i c e c s r t 3 h t

e o i h e e c , d r d h d

s b y e n e a t h

h e r . Judy, of course, is ubiquitous elbowing around corners, there when I’ve dozed and the nurses come through. perhaps others are comforted by the theme with variation? Black robes and white jackets. Red halter tops and blue smocks.

We each have our nightstands of sorts, practical—space for a cup with bendable straw, the vomit bag like a coiled snake, but also a bit of space left over, and here we place our totems. this is how we know them, the others, like planets, or skiffs, that come and go the orbit of the ward. A vase of tulips, color yellow,

for the woman who hums the ice cream truck song,

incessantly, A stuffed cat with stripes and sleepy eyes, for a man who hugs a pillow all day and night.

A bowl with fruit-shaped candies like faded gems,

for the woman who dials hospitality several times a day, “no calls? no calls?”

And, finally, and most improbably the nightstand with the fly swatter, Although in all my time here I have seen neither fly, nor cockroach. once I thought I saw a white cabbage moth dancing at the window pane, as, often in the garden, I recall

67 that ghost dancing its own melody over the hollyhocks. But it was a trick of the light or my eyes. not even a spider of the smallest sort, not even a fruit fly! And here where fruit is hauled in, basket piled, waxed, enormous, impermeable, impossible as the cut-glass candies. surely some fruit fly might crouch in the paper grass? they must have a man just for flies, an emperor of insects, escorting them out, under Judy’s righteous intonation. could a swatter keep her at bay? or slap at solemn pronouncements, a thwap at death.

on my table, a book.

A young man, once my student, placed it there

delicately, in the empty space. Inscribed probably. But I haven’t lifted the cover.

despite the long empty hours,

the high windows. I haven’t sought the release of the “M,” gigantic, wonderful, trumpeting across the ﬁrst page. to do so now would mean to return to look, merely look at, the passionate imagined intimacy that was him (behind the “M”) and me. It would mean a return, not to the ﬁeld itself

68 to wrestle and embrace, as once I tumbled headlong, full of passionate intensity, experience multiplied by the voice of my own Virgil who led me, deeper, always deeper. Is he, too, on this other side? does he look, merely? I believe he’s still alive, his children professors themselves now perhaps. If I were to raise a feeler, test the air, as once I did, the thread, invisible, unreal, would be still, limp, let fall. But I’ve done my mourning already, waited out in exile, without cunning or guile. the green cover with its harp has proven useful for impressing the doctors, the nurses, of course, see through it,

and, so,

it stays shut.

cheryl hindrichs is an associate professor of english at Boise state university teaching twentieth century literature and theory. email: cherylhindrichs @boisestate.edu

V o I l 2 s u s 7 0 u m 0 1 e e 8

— b t T Y * f t t a w g t a w i s i o h i h s r n e * l l o

h h h w l l l a k i o t c d

l n u * e h e e t t t o o i u h

n d

h h n r * e e n w m g l e a e

g i i e e a

h m e n f

t t

y d

c e t t h

v s b f

g h

e y e o m e e a g a e

o a e l

o d r r r

a h

t b r o d s u

c e u , o g l a e i r

m h

e n

m w

w e

a s c i a w i e b d a a p n m g a n a

v a l t

l i t a a

n a a k l e h s

t w u n

i s t

s i s n

h o r

n e h h n f

h t k n n t

y u e n o e o o g a a h e o s -

a r

t n m

n w t t s

e t n t h r r b

w e h h

d o p o

e e i o g

l y e n e

o o a a , r e o r S a b o

g e c s d o m n g O s o g

i e u s p

k a r n

m a e d f e r f t

o w o e o l i n i o o s

b s n n u t r o

r w r p a e

e y f g s e n

G o . n y e e i w r d d t r s o

h r

e e P w d i e e i n r v r t c i n h g i k scraping the dust with ﬂowers cut in half, were still alive helping you remember

though once your hand is empty it opens the way these dead were gathered from dirt

each year higher, are listening for rising air and mourners used to so many steps :her grave

knows how lovingly the ashes fell cling to the ground as nights side by side still counting the grass

by twos though you come here for work, ask for work

with rags and dried-up brushes.

****

They still cling to your ﬁngers

as pieces :this cemetery

is all that’s left from an empty shell

that became the earth, patched with wooden tools and tears to lower the ground—by themselves

take this dirt by the hand already an endless breeze warmed by your soft blouse

unbuttoned each spring to show what emptiness looks like from inside where you point 71 as if step by step sharp picks are cracking open your gravestone not yet amber or gravel.

**** Though it’s late for the sun

once you add sand the extra weight lets it take hold

where the chimney could be would cover your hands with ashes when there’s no smoke left

—not yet built and already you hear the ﬁsts banging from inside

to show what the door looked like

once it’s shut and the next morning no longer comes by, was melted down

for the sea now crammed between this shore

and the other—you dig and you dig for salt, want to keep the water fresh

close to the schoolroom bell you hear

—no! a heel-click is what and barefoot you grasp for shoes the children will never outgrow

that wait till nothing moves not their feet, not the laces, one by one pulled out by the hand, heavier and heavier.

****

72 not with linen—stone works better

lasts the way you dead still gather as if the sun not that long ago

had a twin who died in the night became this hill kept warm for you, your mothers, fathers

and the brightness that was left to tell them what’s going on to close your eyes, that that’s

why you’re here, move closer hear who still loves you wants you step by step to stay.

simon perchik is an attor - ney whose poems have appeared in Partisan Review, Forge, Poetry, Osiris, The New Yorker, and elsewhere. for more information, please visit www.simonperchik.com . email: simon@hamptons .com

V o I l 2 s u s 7 0 u m 4 1 e e 8

E T a a H l a t o o I D t v b I e

h h t n n o n f e w c v v r h

e e

e l a d d i t e

a i e o r

i c a t e h f n r w r

e h t e w i t t

r y e

t w s h h L g e e s n i i

n n s

f t d e e e

m u g i b n o i o a A s y

d t

t s n r e h t r n l r u i

e o h o

u e o n a

b g

. d h n g t w i a

t n r r s

h s B e

a e h d e a e e k h e g I

r a e t u s e r n

n — t f s s e a o h

o h

a t d

i s

a d t

f o a

j n o s e t m r o r

n L s u

a t v o o f y e m a m

o m

r t t e u y e

t u i t

n h b h t w L d r y e

t l n p t t b a e v u e

e e

o o o

h i t o y y y r e g

d i t

s o

p l A o o

f n m t e t a t m

s r t l

a t s a r t

l f y

h a a o y l o t l y A o

t e

k e n i

u i t

c w

r e a c r n s o . y C l c a

s r i e m

s r

e c

b i r x t a t n a m

o e h e i e m f n l a a r . u r r l a s

d e d t

n e g n t i g s

s g . o

h l s A d i

i , i S m n

g i n s d s e t h a , e

t e

e r t

e t n s n i

, r

c B t a t s e h

t a / d r o

r o T r o u i h g n u h e m

D ,

1 e a 9 d 3

5 The Dead Abandoned at Crest Sanatorium, 1935 (to be read in the round by different voices) patients, nurses, doctors, gardeners, cooks, potters, weavers, and all visitors gone. the wind is the only rattle-like cough now drifting through the broken, airy windows and the hollow halls of the sanatorium. We were dropped off. Abandoned— To take the air , to try the cure . We fought, but we did not heal. We were never picked up. now we are just a row of stones untouched— as we were untouched in life. Even a single lily

dangerous,

too dangerous

to lay at our feet.

lisa Alexander Baron’s latest poetry collection, While She Poses, was prompted by visual art. she is a professor from philadelphia who teaches advocacy in writing and speech to health professionals. Email: [email protected]

V o I l 2 s u s 7 0 u m 6 1 e e 8

I t t a m k s s p o n h l M a n i f n c b a n

h r o t t o t n i r f o o i a a h a u r t o

l a

o e a m e r c t o e l r w t a h g p

, t s e h h d y M y u t m

c v k h e e s e e e d i t e

e o e . a r d e d u r h e s

s e i r

y I u g

f y

i i r i b r s o d e C n b f o a a s n t e

s e m s r e r f y u m w o

e s

t e r t

, l t a a o g a

: a

: m i e g e

s i a c 7

t n g a s o i e s t m

M s h M t h l n . c h o

0 i s e s i l o u

l c e

a t

n M d

e t f t

i e i r r o w y o g y

r b m h

r n , r i . i

d d d

n n

c f

e “ i y h a t p v g a

l u w a a n e i i T l e g c i h

n d n e r i c a y v a m r g m k s a l

o a h s c e M d . t i e

e o e t t i u

i n

1 e n i

n r h i i e .

I n

o f P d j l n

k r s l d g g n 0

“ d

u g o

y t o g a u n e b t e i e e r

s h

f s r n h

o m n n y

. t a a h , o o e a a s t t e

e h r o g p n t l

S w a h

a d t f b m r e n

w T

a h u l i d g

d G w e a y l h o a d e i n d a h y t e

r a e r t f f

e u

g r h i r n y r a a t

e d n o m e W a e f f e e c d e

t e n

o a i a d t d l f o

K r a r o v p h

e n ’ m s y u d

m m t

h a i

t u e u u l

s n y e

s m o o y l a e h y o r r u D l l d i k i

e o t f o d a m n f

l l l M o e o r r

d o

s w e y e

y c e s l u

g t o

g o u u , y r . d t

t n o k w e a p

e i t i e r h f h l n T k c p p

d t o n s l o d

r r a a y i c e s a m g a e e s

h w y

a t

r u r s

ﬁ l

t r i e a y s v a

l r “ e t o

s a o h s e m f , r i g g i d 1 e y b r

v l o n i k t

s n a a r h r e e e

o i 9 b c o e b t r g s e e e i p e n a .

t h

n . o r s u

y w ﬂ e

d e s s y

T k s a d o

b T ,

s s

d t t r . i ” e

” w o y o e

c t h n t l o t

c h

p u o

h d e r h

r l f a s c e T t f t h h e e e n m f s t o h e i o

e i k t

i r g r e a . h n e c

e r

d c e

, o e t

n k e a

o o u e g

b h w

s s s r

i r u

w m e e m l i t a o t o l s a r - ” e i a n o - s y d r s - is cancer, diabetes, or Alzheimer’s. What I am com - ing to terms with is that all of these death options share inflammation as their cause. You know inflammation. let’s say you’re walk - ing at a good clip when you trip on an uneven sidewalk. If you fall and scrape your knee, the point of contact will become inflamed. It will grow painful and red, swollen, and perhaps hot as blood rushes to the injured site to repair tissue. It’s no surprise that the word derives from the latin in - flammo, “I ignite.” This is inflammation at its best, intense but short term, the immune system fighting harmful stimuli, such as damaged cells and bacte - ria, and beginning the healing process. Inflammation at its worst is chronic, resulting when the immune system attacks healthy tissue, mistaking it for harmful pathogens. This type of in - flammation is at the heart of a wide variety of seri - ous disorders, including health conditions that end

in “itis” (arthritis, colitis, dermatitis, sinusitis)

(Aronson, 2009) as well as AD/hD, migraines, thy - roid issues, depression, and even autism (Khansari,

Shakiba & Mahmoudi, 2009). In addition, inﬂam -

mation begets inflammation. Women with inflam - matory autoimmune disorders like Crohn’s and celiac disease are at greater risk of giving birth to children with autism (Atladóttir, pederson, Thorsen, Mortensen, Deleuran, eaton & parner, 2009). While it’s a pity that inflammation is the culprit behind visible signs of aging (Giacamoni, 2018), I accept crepe-like skin and the loss of youthful beauty. What confounds me is that my medical his - tory has led inevitably to a health crisis I did not

77 recognize for years. It appears to have begun a few years after we relocated to Southern California. I was walking with my neighbor Sue around a duck pond when my body grew warm, my eyes began to smart and itchiness crept down my body from scalp to ears, neck, and arms. I am a scratcher with lifelong eczema and adult onset allergies to the usual ﬂora, fauna, mold, and dust. naturally, I scratched. I am a world-class scratcher. Then as now, I scratch mercilessly - angry red ridges rise on the back of my hands. My legs are pocked with scabs. I scratch because it hurts to itch. That day I felt a mysterious prickling at my lips. Back in Sue’s car, I was shocked to see that my face had transformed into a mask of welts; it was a hideous face with bulbous lips, one I had never before encountered. My internist diagnosed hives and prescribed adrenalin injection pens, in the event my throat closed shut, which it never did.

As long as we lived in California, these swelling

episodes occurred at the beach, the park, a hot tub in Santa Barbara, and once in the middle of a four-

hour class I was teaching. I didn’t cancel class; I

reasoned the result was unsightly but benign, a mere inconvenience. I hid my bulging eyes behind sunglasses. our ﬁrst year back in new York, retired in the city of our dreams, I was allergy free, enjoying a whirlwind of all the exercise I love, but had no time for when I was working - walking, swimming, lifting weights, riding my bike along the hudson, and meeting friends for yoga. Smugly, I thought new York was the answer, as it always has been

78 for my husband and me. The allergens that had made me miserable in California did not exist back east, a notion I gladly subscribed to until one autumn day, following a reunion with my child - hood friend Donna at a Chelsea restaurant. After lunch, we walked the high line, where I ran my hand through tall grasses that shimmered in the hot sun. Donna and I bid good-bye on 23 rd Street and I was standing on the subway platform when my breathing grew ragged. I had not had an asthma attack in years. It had been so long, in fact, that I could not remember when I had last renewed the prescription for the inhaler I retrieved from my purse. I attempted to breathe in on the pump, but I wheezed with whistling breath to no avail. By the time I reached home, my face had exploded to alien proportions and I was heaving lunch on our apartment door as I fumbled for the keys. I

thought the restaurant had served me rancid mayo,

and that asthma with hives was some new intrigue in a sensitive autoimmune system ignited when I

ran my hand through the high line grasses. My

internist recorded “allergy-induced asthma attack” and wrote prescriptions for a more powerful in - haler and new adrenalin injectors. I felt fortiﬁed. over the next six months, the attacks gained in frequency and severity. It happened in yoga, and the doctor said to stop doing yoga in an old Soho factory. It happened at the gym, and I let my mem - bership lapse. It happened indoors and out on cold days and hot. The pulmonologist was perplexed and unhelpful until I took a picture of my bloated

79 eyes and crooked mouth at George Washington university hospital, when my husband and I were on a weekend get-away. We had walked about two miles from our hotel in Georgetown and had just entered the park between the lincoln and Vietnam Memorials when I lost my air. I am always aston - ished by the rapidity with which attacks arrive. on one side of the street, I was walking whole and on the other side, I was doubled over on a bench near a concession stand, clammy and suffocating. “This is not asthma!” the doctor exclaimed, re - ferring me to an allergist who took one look at my data collected over seven episodes and congratu - lated himself on diagnosing my problem in a split second: exercise-induced anaphylaxis, a rare disor - der with no cure. Symptoms usually follow vigor - ous activity, though mild exertion can trigger attacks in cascading levels of severity: warmth, itching, and nausea precede angioedema, what my

doctors mistook for hives. Although hives are also

a symptom of an allergic reactions, they appear on the surface of the skin. Angioedema is swelling of

mucous membranes below the skin. Anaphylactic

shock occurs if soft tissue in the throat and larynx swells, narrowing airways and producing shortness of breath similar to acute asthma. Within minutes, blood pressure falls, heart rate accelerates, and car - diovascular collapse will occur without urgent medical treatment that includes adrenalin (lewis, lieberman, Treadwell & erffmeyer, 1981). “You have to slow down,” the allergist said.

***

80 I am nine years old, on the exam table in Dr. Gibbs’s office overlooking the Mississippi river and the bridge to Illinois. I have come with my mother for a checkup because I am recovering from rheumatic fever, a rare but potentially deadly disease that typically develops after untreated group A streptococcal infections, such as tonsillitis and scarlet fever. Dr. Gibbs surmised that I had contracted scarlet fever but my parents mistook the rash for eczema. rheumatic fever would rob me of three consecutive winters. I could only watch as my younger brother learned to ice skate, etching figure eights frontwards and back, gliding around the rink at great speeds, right boot lithely crossing left, hands clasped behind his back like drawings in our hans Christian Andersen book. rheumatic fever is an autoimmune disorder. The body produces antibodies to fight strep, but for unknown reasons, they attack the body’s own

tissues instead, inﬂaming the heart, blood vessels,

and joints. Complications of rheumatic fever killed Bobby Darin in 1973. like me, he suffered three

bouts, beginning at the age of eight, but he was 12

years older, way sicker, and not as well cared for as I. The fact that rheumatic fever develops in only a few cases with an identical precipitating infec - tion suggests differences in genetic susceptibility (Acheson, 1965). one summer my mother fell ill with rheumatic fever and was hospitalized. My brothers and I, ages four, ﬁve, and six, were cared for by a stranger in the Manor, a development of dull yel - low cinder-block rentals erected during the War to

81 house an inﬂux of workers at the Army Ammunition plant. Because the duplexes were identical, it was easy to get lost, escaping the park, where the local rufﬁans fought us for the swings. The babysitter served canned peas, while our mother served the bright green frozen variety, only recently available. Summer had just begun when my nine-year-old self was looking at the river and thinking how I would learn to slalom with my brothers. We’d jump the wake with knees to chest like Wisconsin Dell performers. I felt cured; my joints weren’t sore. Still, the doctor said I was not so well. I could not ski or ride my bike. I had to walk, not run, even when my brothers peeled off a block ahead, and I had to nap. I hated naps; I hated sleep altogether. I would never learn to slalom. The doctor prescribed a pill to slow me down. In the car, tears streaked my sweaty face. “I don’t

want tranquilizers!”

“They’re not tranquillizers, just sedatives,” Mom offered. I knew I could not believe her.

***

Despite childhood illness, I have lived an incredi - bly healthy life. I rarely have a cold or ﬂu. I rank in the bottom 20 percent of women my age for the likelihood of developing arteriosclerosis. I do have a mitral valve murmur, which indicates scarring on the left side of the heart, but it requires no treat - ment. I still ride a racer bike, sleek and light, de - signed for quick handling and optimal power with

82 drop handlebars that put you in a more aerody - namic position and clipless pedals, which anchor your feet so that you are literally one with your cycle. recently, monthly shots of an antibody that decreases incidences of hives and severe asthma have been successful in ameliorating my an - gioedema and anaphylaxia. I have ridden my bike for the first time in 18 months. I cannot ride far, just far enough to feel free of illness and fear. I still have attacks, but for nine months, they haven’t af - fected my breathing. This inflammatory crisis did not begin in California. Inflammation has been my constant companion, active at times and in remission at oth - ers, a distant whisper easily ignored. I sought to outrun it as long as I could through the practice of perpetual motion, but you cannot outrun yourself.

References

Acheson, r.M. (1965). epidemiology of acute rheumatic fever 1950- 64. Journal of Chronic Disease, 18 (8), 723–734. doi: 10.1016 /0021-9681(65)90016-0

Aronson, j. (2009). Coda. Quarterly Journal of Medicine, 102 ,

895 –896. doi: 10:1093/qjmed/hcp039 Atlad óttir, h.o., pederson, M.G., Thorsen, p., Mortensen, p.B., Deleuran, B., eaton, W.W., & parner, e.T. (2009). Association of family history of autoimmune diseases and autism spectrum dis - orders. Pediatrics 24 (2), 687–694. doi: 10.1542/peds.2008-2445 Giacomoni, p.u. (2018). Aging of human skin. In j. ram & p.M. Conn (eds.), Handbook of models of aging (2 nd ed.). new York: Academic press, 993-998. doi: 10.1016/B978-01269391-4/50083-7 Khansari, n., Yadollah, S. & Mahdi, M. (2009). Chronic inﬂamma - tion and oxidative stress as a major cause of age-related diseases and cancer. Recent Patents on Inﬂammation & Allergy Drugs Discover, 3 (1), 73-80. doi: 10.2174/187221309787158371

83 lewis, j., lieberman, p., Treadwell, G. & erffmeyer, j. (1981). exercise-induced urticaria, angioedema, and anaphylactoid episodes. Journal of Allergy and Clinical Immunology, 68 (6), 432 –437. Theoharides, T.C., Asadi, S. & patel, A.B. (2013). focal brain inﬂam - mation and autism. Journal of Neuroinﬂammatoin, 10 , 815. doi: 10.1186/1742-2094-10-46

pamela Walker has pub - lished in multiple genres, including the novel (Twyla) and short ﬁction. her essays have been an - thologized and her poetry has appeared in Tiferet . email: pamelawalker8 @me.com

V o I l 2 s u s 8 0 u m 5 1 e e 8

T a y s y t a w m t m A o s a y e o t l I a e

o h h a t a t o o n n o

v f s h a a f f h

o y l

e c t r u u d e d u t e t u t r n e a

a h t r h a e h r v c c c r r

n i e n t

a m d i b

e y

h r e e n o t

d h

j f d t d g

a w r , o h

t e a e e h g n n y

i h e

a c

a w t d e u i d u

o i ﬁ a

e o r s h k a a i n d b ﬂ i

’ i n s n

c f

d h t n f l n g n a e c f

l t i r c l d o p e u e e m e d a d a

t g

o h o s y i n a

r r a n n i n

o c y b e s

n s e c b o f r c r b s k d e

s w e o

y o

r s c o e e u o s

d n o

e n

u t f d h

w h m p n s m w r m l

l o r f o ’ i o y s m a s i

e l o l l e t n u e w k

y h s l e

l c w r h m a

o e d

h i k i s c n i s n t O t n

r n e

n k a i

e e y a o o

n y c t e

p o

g n m o l A

p f o b u c

o g l g

s r o

u o a c l e r , u b o

i U l l w r f g

a i d a i e

l s w n o

u a i n t c

s h n n n M t a r n t n a n

. t k g e l o o c e h l a . l e a n o u r

d r i

i T s i w n r o o g s v i

: l

a f i s w e

y n

n a h c . k e n o v c e n

i k O t l r d o r a l i r g i i n as a conﬁdence man , dismayed that with all our advances we can remain so uncertain. I brush the coarse strands of your auburn wig from your shuttered eyes— a favor of unknown origin.

There lie the roses that you will never smell the apple that you will never taste and there in the corner ﬂoat the red balloons that you might have liked to release to the sky in a fervor of unknown origin.

Ali M. Tahvildari is a radiologist based in northern Virginia and a clinical Assistant professor (Adjunct) at stanford university school of Medicine.

V o I l 2 s u s 8 0 u m 7 1 e e 8

T T i t f t i t t h i c n o a f f h t e h t n n n h a h o e o e h h o x f e o l u i h r n l c t s

d s e e w r i a

m c t t b t m e s a i , o e t

h e h

d a

r m d a l a r m a ,

t u n s p p i m

l w e i n e i h k t e r k t l i n g g o

a t s i

a i f r d T a

e e d e v h

a m i h g h e o a n s p n i n

d s

e e s . n i

e o r t l

n r h

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Heart Speaks, Is Spoken For by Karen Elias (usA). contemporary

88 At the American Museum of Visionary Art: The Gateway — Artist Antar Mikosz

Even with 3d glasses, all you can see are trees swaying in a breeze of blood beside a swampy pond murky with nightmares. A rapist lingers somewhere in the periphery. I, too, hear him breathing, his damaged heart heaving inside your terror that clings to thick vein-like trunks patterned with geometric tastebud recipients of bitterness—the ones in all our bloody pumps. This is the way of perception. fear steers me toward the portal of your forest, but all I can see

is the inside of my father’s heart where, from a deep hole, his donor’s car careens into scream that bubbles up now from the pond of your words

into my father’s aorta,

pulsing a rhythm of red that remembers foggy dreams

painted by a young man

detouring an icy life into accident

or gift, this gateway mysterious in its pathway of give and take, in the perception of breath we can not swallow, the visions we see daily vibrating between now and here, between lovely, dark, and deep.

89 The Gateway by Antar Mikosz. courtesy of American Visionary Art Museum.

An English professor at lock haven university, Marjorie Maddox has published 17 books. please see www.marjorie maddox.com