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When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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Emily Bauer, mother of two small children, psychotherapist and teacher, social, smart, athletic, and strong-willed, finds, after a curious series of falls and other accidents, that she has ALS, "Lou Gehrig's Disease," a disease that involves slow atrophy of all muscular control, leading to complete paralysis and then death.  The disease is relentless, and treatments palliative at best. 

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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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This powerful collection by nurse-poet Jeanne Bryner addresses several themes.  She tells very difficult child abuse stories in the voices of children and health care professionals.  Nursing stories emerge from experiences on the surgical floor, in the ICU, labor and delivery, ER, etc.  In one poem nurses take a political stand for healthcare reform; in another the nurse helps a patient die; in another she listens to a patient describe how he endured the colonoscopy prep in his bathroom, then took his shotgun and blasted the plastic jug "to Kingdom Come.  That, he said, felt like justice." A whole section of the collection is devoted to writing workshops the nurse-poet led with cancer survivors, assisted living residents, former patients.

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Open Wound is a novel crafted from the extensive documents of an unsettling, little-known, yet remarkable episode in the history of medicine.

In the summer of 1822, Dr. William Beaumont was practicing medicine at a rugged military outpost on Mackinac Island in Lake Huron, part of the Michigan territory.  His assignment as Assistant Surgeon, US Army represented about the best circumstances he could expect from his training as a medical apprentice without a university education.  In addition to soldiers and officers, Beaumont sometimes attended patients from the American Fur Company, whose warehouses shared the island's harbor.  On June 6, an accidentally discharged gunshot cratered the abdomen of an indentured, French-speaking Canadian trapper.  Fortunately for him, Beaumont served during the War of 1812 and knew how to care for devastating wounds.   With the surgeon's medical attention and willingness to house and feed the hapless trapper, Alexis St. Martin's body unexpectedly survived the assault.  But his wound didn't fully heal.  As a result, it left an opening in his flesh and ribs that allowed access to his damaged stomach.  Through the fistula, Beaumont dangled bits of food, collected "gastric liquor," and made unprecedented observations about the process of digestion.  

His clever and meticulously documented experiments, conducted on the captive St. Martin over several years, corrected prevailing assumptions about digestion.  Once thought to depend on grinding and putrification, normal digestion, Beaumont observed, was a healthy chemical process.  Any signs of putrification or fermentation indicated pathology.  In 1833 Beaumont published his thesis on the chemistry of digestion in Experiments and Observations of the Gastric Juice and the Physiology of Digestion.  Shortly before completing the book, he received a temporary leave from his military service to restart his research in Washington.  But to carry on his project, Beaumont had to persuade St. Martin-who entered and exited his physician-researcher's life several times before-to leave his growing family in Canada and once again become a research subject.  St. Martin does return, with pay, and briefly accepts his role.  But he also confronts Beaumont about whether the long confinement on Mackinac Island was more necessary for the patient's survival or the doctor's research agenda.  Or for the doctor's subsequently improved station in life. 

Although some of Beaumont's academically trained colleagues found fault with his methodologies, the farmer's son and frontier doctor did achieve a gratifying level of professional accomplishment and wealth.  To enjoy them, he had to set aside humiliations he experienced along the way, accept his lot after military service as an ordinary practitioner in St. Louis,  and weather an unforeseen turn near the end of life.    

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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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On the viewer's right, in receding repetition, are narrow, numbered, blue wooden, open stalls.  Inside the stalls, and only partially visible, people are standing, dressed in street clothes, either alone or in couples, their coats still on.  In the most forward stall there are no people--only two coats that hang from coat hooks, their owners no longer "waiting."  The stalls are open at bottom and top and are illuminated by repeating fluorescent ceiling tubes.  In the lower right foreground sits a bald man dressed in a blue jacket and brown pants who looks down the narrow corridor from which the stalls branch off.  In the lower left foreground is a bench on which two men are dozing -- one man leans forward with his head tilted down, his face obscured by the hat he is wearing.  The other man has his eyes closed, his head tilted backwards.  Both are still wearing their coats.

Standing in front of the dozing men, all the way to the viewer's left, is a looming figure -- a man who stares out at the viewer, his thick glasses hiding his eyes, his mouth turned down in a suspicious frown.  He wears a dark blue coat and a brown hat.  Scraps of paper and possibly cigarette butts litter the floor in front of the sitting men. Blue is a prominent color in this painting but some of the figures wear bright red sweaters, shoes, or a dress, and a red scarf hangs from one of the hanging coats.  These individual touches of color seem to represent attempts by the sequestered people to preserve both their individuality and vitality.

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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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This documentary film follows the professional and private lives of the 2004 U.S. Wheelchair Rugby team. Murderball is a highly engaging, informative look at the lives of a group of quadriplegic men who are also elite athletes. The sport of "murderball" combines basketball, hockey, and rugby. It is played in custom-built wheelchairs with angled, shield-like metal side plates that make the chairs look like chariots, encouraging the term "gladiators" that is often applied to the players. Invented in Canada in the 1970s, murderball was renamed "wheelchair rugby" or "quad rugby" to make it less offensive to corporate sponsors, but retains its toughness with any name. The sport is played without helmets, and its players tackle each other through chair-to-chair collisions as they try to move the ball to the end zones.

The documentary begins with the 2002 World Wheelchair Rugby Championships in Sweden, includes team tryouts and competitions with arch-rival Canada, and closes with the Paralympic Games (held two weeks after the traditional Olympic Games end) in Athens, Greece. The film is a fast-paced sports documentary with abundant chair-level footage of action on the court, but also focuses on many aspects of the personal lives of key players, including psychological conflicts and sexuality. While the documentary is focused on the entire team, not individuals, three distinct subplots include the emotional journey of team captain Mark Zupan, including his relationship with the friend whose actions precipitated Zupan's disabling accident over ten years earlier; the passion and resentment of the Canadian team coach Joe Soares, who was cut from the U.S. Team and whose obsession with murderball leaves little space for Soares to appreciate his musically gifted teenage son until his own heart attack; and the experiences of newly disabled athlete Keith Cavill.

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