Constructed Bodies, Edited Deaths: the Negotiation of Sociomedical

CONSTRUCTED BODIES, EDITED DEATHS: THE NEGOTIATION OF SOCIOMEDICAL DISCOURSE IN AUTOTHANATOGRAPHERS’ WRITING OF TERMINAL ILLNESS by TASIA MARIE HANE-DEVORE Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Dissertation Adviser: Dr. Kimberly Emmons Department of English CASE WESTERN RESERVE UNIVERSITY May 2011 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the dissertation of ________Tasia Marie Hane-Devore_________________ candidate for the __PhD_______________degree*. (signed) _____Kimberly K. Emmons_________________ (chair of the committee) ___________Kurt Koenigsberger___________________ ___________William Siebenschuh__________________ ___________Thrity Umrigar_______________________ ___________Vanessa M. Hildebrand________________ ______________________________________________ (date) ___21 January 2011________________ *We also certify that written approval has been obtained for any proprietary material contained therein. ii TABLE OF CONTENTS Acknowledgements ............................................................................................. iv Abstract .............................................................................................. v Chapter One The Editor’s Mark: Autothanatography and Sociomedical Discourse .......................................................1 Chapter Two “When will my release come!”: Writing Consumption/ Writing Tuberculosis in The Journals/Journal of Emily Shore ........................................................................ 43 Chapter Three A Difficult Entanglement: Negotiating the Discourses of Disease in Eric Michaels’ Unbecoming.............................. 78 Chapter Four The Myth of Irresistibility: Harold Brodkey’s This Wild Darkness .......................................................................... 120 Chapter Five Auto/thanatography and Interpolation in David Wojnarowicz’s Close to the Knives: A Memoir of Disintegration.................................................................. 162 Epilogue New Challenges in Print and Online: Autothanatography, Community, and Editorial Control .................................. 198 Appendix A Hospice of the Western Reserve Documents ................. 216 Appendix B Transcript of Doctor-Patient Encounter ......................... 227 Appendix C Transcript of Online User Post ........................................ 232 Bibliography ......................................................................................... 235 iii ACKNOWLEDGEMENTS This project would not have been possible without the support of Professors Kimberly Emmons, William Siebenschuh, Thrity Umrigar, Kurt Koenigsberger, and Vanessa Hildebrand. I appreciate their guidance and encouragement, especially in the later phases of my dissertation writing. I am particularly indebted to Kim for helping me organize the chapters and to Kurt for pointing me in the direction of Emily Shore’s journals. Thanks go to the graduate students on the fourth floor, most especially to those folks who not only helped me see the bright side of difficulty, but who also made me laugh on a regular basis. I am also grateful for Susie Hanson, who, despite working with me for three years, still thinks I’m smart, and tells me so. I will spend my life trying to be as kind as she is. My unbounded gratitude goes to my wife and kids for spending time with me during the day and for allowing me the space to write and think in the middle of the night. Thank you for brightening every moment of my life and for making it possible to live. You are my best teachers and friends. I would be remiss if I did not acknowledge the inspirations for this dissertation, my writing professors, all dead too soon, though I hear their voices and see their faces, still, when I write: Reginald Shepherd, Laurie O’Brien, and Caroline Dreyer. Without their faith in my abilities, their friendship, and their encouragement, I never would have tried this PhD thing. Reginald, I haven’t figured out what to do without your fluttering eyelashes and glorious lunchtime dinnertime anytime hugs. I hope you’ve found your “palmful of Persian peaches.” Laurie, you were wrong just once: I was ready for your bald head. (Okay, maybe twice, because I still use colons in poems.) Caroline, just one more midnight cappuccino and flan at Jackson’s and then a drive around town, for old times’ sake. I’m glad you asked. (PS: Cancer and AIDS can suck it.) Thank you to Advanced Practice Nurse Karen Vekasy at Hospice of the Western Reserve for the generous gift of her time and for sharing portions of Hospice’s Legacy Videos and educational documents. Earlier drafts of dissertation excerpts were presented at the Northeastern Modern Languages Association (NeMLA) and New York College English Association (NYCEA) conferences, presentations made possible through generous financial support from the Department of English at CWRU. The Arthur Adrian Dissertation Fellowship provided much needed time and financial support to complete the first draft of this project. Thank you. iv Constructed Bodies, Edited Deaths: The Negotiation of Sociomedical Discourse in Autothanatographers’ Writing of Terminal Illness Abstract by TASIA MARIE HANE-DEVORE Bringing together life writing and medical sociology, “Constructed Bodies, Edited Deaths: The Negotiation of Sociomedical Discourse in Autothanatographers’ Writing of Terminal Illness” interrogates the relationships among autobiographical writing practices, identity, and the cultures of illness in the nineteenth through the twenty-first centuries. Using texts by Emily Shore, Eric Michaels, Harold Brodkey, David Wojnarowicz, and Eva Markvoort, I argue that autothanatographies, or authors’ writings of their own terminal illness, explore issues of subjective loss that occurs through bodily deterioration and under external forces of concomitant social and medical stigmatization, often operating in the guise of risk management. Such stigmatization arises from medicine’s attention to pathological physiology and categorization rather than to holistic treatment of the ill subject. This study remedies gaps in theories of the genre by going beyond assertions that autothanatographical texts engage with extratextual influences that propose a shared and thus mutually expansive narrative, as proposed by theorists such as Suzanna Egan and Nancy Miller. Rather, I assert the ways in which the multiple external discourses surrounding disease, or sociomedical discourses, alter the actual illness experience and recorded expressions of the author as demonstrated through editing practices and control, thereby illustrating the challenge of representing the self in autothanatographical writing. v CHAPTER ONE The Editor’s Mark: Autothanatography and Sociomedical Discourse Sharon sits up in bed, two pillows propped behind her to keep her back straight while she recites a poem to the camera, “Litany” by Billy Collins: “You are the bread and the knife / the crystal goblet and the wine. / You are the dew on the morning grass / and the burning wheel of the sun” (1–4). The first lines of the poem are taken from a Belgian poet’s obscure love poem, she explains, Jacques Crickillon’s “Vous êtes le pain et le couteau, / le verre de cristal et le vin.” Her Archer Heights accent and now-raspy voice send the syllables thudding, and she laughs at her own pronunciation. “My mother used to tell me that I sang through my nose.” After a few moments, she says that the Collins poem reminds her that we are—that she is—the images projected into the world, open to interpretation by others. “[T]he moon in the trees,” she recites, “the blind woman’s tea cup” (25–26). She tells her imagined audience that she identifies with the speaker’s wavering between self-mockery and conceit. She views her body as another metaphor and a reminder of the precarious balance in which she lives. She tries to make us understand: “Litany,” like her body, reminds her of the Zen paradox of being many things at once and yet one thing all the time. Now finished with the poem, its long list of metaphors and attributes, its final, poignant return to the first lines, she turns off her oxygen tube, reaches for a cigarette, and flicks the striker on her lighter. She turns to the camera. The hot heart of the cigarette gleams. “I’m not supposed to smoke?” She smiles. 1 Like many people with terminal illness, Sharon has a story to tell. She does not deem herself a writer in a strict sense, though she is in the habit of writing frequent letters. When she mentions how much she hates the hospital trips and the chemotherapy and the radiation, her friends, ever supportive, focus on what she has to live for and how they admire her strength. They are trying to make her feel better, she says, to reduce the mental ache they imagine must be present in her deterioration. Why, then, she wonders, does she feel stifled by the five stages of grief1 and her lack of spiritual revelations? She is trying to make sense of how she got here, how she arrived at this dying. When a staff member at Hospice offers Sharon the chance to make a video in which she can express her thoughts on death and dying, she hesitates for only a moment before accepting. When provided the means, the dying often have a desire to tell their stories. Sharon has seen Silverlake Life: The View from Here (1993) by Tom Joslin, filmed entirely with a handheld camcorder. She understands the power of visual and spoken text, especially in the instances in which the

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