Summary:

Artist Sue Coe's mother Ellen was 64 years old when she was diagnosed with terminal cancer. The artist and her sister went to Liverpool to be with their mother at home, since Ellen did not wish to spend her last days in hospice. Sue Coe documented her mother's last days by drawing her, producing the series, "The Last 11 Days: July 20th to July 31, 1995." In the first drawing, dated July 20 (first drawing, right side), Ellen was still at the hospice. The drawing concentrates on face and hand, which are also the main features of other drawings in the series. The hand is large and bony as it is brought to Ellen's mouth, which is partially covered by the hand. Ellen's eyes are wide open and express anxiety and fear.

In a drawing dated July 31 (last drawing, left), the last day of Ellen's life, the artist's face and hands loom large in the right foreground while in the left rear the mother lies in bed, a small thin figure, barely awake, mouth open, her large skeletal hands resting on the blanket. The artist's face is thoughtful, sad, resigned--her thoughts seem to be drifting.

Another drawing, dated July 29 shows the artist's sister cradling Ellen in her arms, supporting her head. The mother's eyes are closed and she appears peaceful, comfortable. Of this scene, Coe writes that her sister was "reading a Stephen King novel behind the pillow. That's the only way she could survive, reading a Stephen King novel that just made her mind go blank." (National Museum for Women in the Arts Magazine, Holiday, 2005, p.20)

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First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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In 1849, Jane Johnson is on a ship headed for Quebec City with her two children. She has had a relatively uneventful crossing – only one old man died and a child was stillborn. She cannot wait to be reunited with her husband Henry. Having left a year earlier, he is waiting for her eagerly. They both now think that they should not have separated. They each clutch the handful of barely literate letters. She has sternly told him that he must be at the ship to greet them. Fully intending to be there, he suddenly falls ill with uncontrollable vomiting and diarrhea and is dragged to a hospital. It is cholera and he realizes that he will die without seeing his little family again. As the boat docks, she thinks she sees him in the crowd.

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A big believer in evidence-based science, Australian Professor Don Tillman is 39 years old, “tall fit and intelligent with a relatively high status and an above average income.” He should be attractive to women and succeed in reproducing. Yet he is alone. Dating is a disappointing waste of time.

After he is asked to give a lecture on Asperger’s syndrome, Don decides to solve his problem scientifically. He develops his Wife Project – a massive questionnaire designed to weed out incompatibles and identify women most likely to be a match. Intelligence, punctuality, shared tastes, and no use of tobacco or alcohol are high on the list of desirables. His only friends, geneticist Gene and psychologist Claudia, humor and support him. Gene and Claudia have an open marriage, which means that Gene’s “research” involves his bedding many women of different nationalities.

Into his life comes Rosie—a wild, disorganized bartender who smokes. She is totally incompatible. Curious about her biological father, Rosie inspires Don to develop the "father project" as a way of identifying all possible candidates and then eliminating them one by one using DNA. Circumstances force them to work together at various other schemes—running a one-off bar for which Don, the non-drinker, becomes a walking encyclopedia of cocktail recipes. A trip to New York City results in more hilarity, further destabilizing Don’s equanimity. His stereotypical assumptions are challenged when he discovers that she is completing a PhD on the side. They have fun. But Rosie cannot be the right one because she would fail the questionnaire.

Eventually and predictably Don realizes that it is Rosie whom he wants and needs. He develops the Rosie project to win her back. He also shows Gene that the wonderful Claudia is about to leave him and that open marriage is for the birds—or is it the bees? Happy endings all round.

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In 1877, the widowed Sarah Bell writes to the New York Children’s Aid Society to explain that poverty has driven her to leave her daughter Lily May in its care. Mr Bassett writes to the same office that he and his wife would like to adopt a little girl. They are given Lily May and change the baby’s name to Mabel.

Over the years, Sarah keeps writing to ask for news of her child; when she remarries she begs to have her daughter back. With evident alarm, the Bassetts tell of the good care they have given the girl; they love her and will not relinquish her. Lily/Mabel has no idea that she is adopted and will never be told.

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The protagonist-physician, Dr. Aira, is an almost 50-year-old sleepwalker who resides in Buenos Aires. He's nearsighted, introspective, and paranoid. Dr. Aira's fame stems from his "miracle cures" - even though it's not clear that he's ever actually performed one. Dr. Aira does not believe in God.

His initial encounter with "paranormal medicine" occurred during childhood when dog owners in his town were led to believe that by submitting themselves to a lengthy set of penicillin injections their pets would be painlessly neutered. Acknowledging the absurdity of that situation, he remained intrigued by the "possibility of action from a distance" (p10) and the lure of magical healing.

Dr. Aira's nemesis is Dr. Actyn, Chief of Medicine who tries to ridicule Dr. Aira and debunk his claims. Dr. Actyn sets elaborate traps including one with a "dying" actor on an ambulance who Dr. Aira refuses to cure.

Dr. Aira obtains enough money to devote 10 months solely to writing his secrets and eventually self-publishing his knowledge in the form of pamphlets. His plan is interrupted by an urgent request to perform a miracle cure on a terminally-ill cancer patient. He consents and makes a house call to treat the wealthy man. After one hour of intense deliberation and theorizing, Dr. Aira's work is complete. Laughter erupts. The "patient" is a fake. It's his archenemy Dr. Actyn in disguise. Dr. Aira's failure is captured on camera.

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This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Where many writers about illness have raised questions about the widespread and often unexamined appropriation of military metaphors to describe how doctors and patients have "struggled with," "combatted," "fought," or "defeated" illness, Dreuilhe embraces it and plays it out to the far reaches of its logic.  Part of the brilliance of this AIDS narrative lies in the way it brings new dimensions of meaning to a metaphor that has become so conventional as to be cliché or so imbedded in the language of illness and treatment, it simply fails to be recognized as metaphor.  Beginning with the "simple skirmishes at the frontier garrisons," Dreuilhe chronicles the progression of his own illness with the sharp eye of a good war reporter who sees through the chaos of the battlefield to the strategies being played out.  "Whenever I take an experimental drug," Dreulhe writes, "—and people fight desperately to be among those privileged to risk their lives—I feel as though I belong to a unit of shock troops parachuted behind enemy lines: already written off as a casualty, I'm entrusted with the task of spearheading the advance."

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In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illness—and their inclusion in medical school and other humanities courses—multiplied from the later decades of the 20^th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers age—Stephen Greenblatt, Michel Foucault, Judith Butler—they have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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Unfortunately,the archive as described and annotated here is no longer available on line. The quotes, summary, and commentary below are nevertheless worth reading. Some images may be found as noted in Miscellaneous below.

Powerful series of self-portrait photographs documenting the artist’s fight against breast cancer, accompanied by a narrative describing her responses to the medical community. In early images, Spence undergoes mammography, lumpectomy, and finally, mastectomy (images 1-3, 5). These "clinical" images provide a temporal narrative of the course of Spence’s "illness," while concomitantly tracing the inter-relationship between the corporal/medical and the artistic body. In so doing, Spence calls into question medical notions of autonomy and ownership, while re-claiming her "right" to the representation of her body-parts.

In later images, Spence rejects Western medicine, in favor of alternative therapies such as acupuncture (image 4) and phototherapy (image 6). As Spence writes: "Women attending hospital with breast cancer often have to subject themselves to the scrutiny of the medical photographers as well as the consultant, medical students and visiting doctors. Once I had opted out of orthodox medicine I decided to keep a record of the changing outward condition of my body. This stopped me disavowing that I have cancer, and helped me to come to terms with something I initially found shocking and abhorrent."

Supporting text by Terry Dennett (Curator, Jo Spence Memorial Archive) at the end of the series of images provides additional excerpts from Spence’s writing, and several useful links to breast cancer awareness sites.

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