Summary:

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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Eric Calhoune is known to his classmates as "Moby" because of the extra weight he has carried since grade school.  Though his mother is young and athletic, he has inherited the body type of the father he's never known.  Now, in high school, the fat is turning to muscle under the discipline of hard swim team workouts.  But that transformation has been slow in coming, since for some time Eric has taken on a private commitment to "stay fat for Sarah Byrnes."  Sarah, whose name is a painful pun, was severely burned as a small child not, as we are given to believe early on, because of an accident, but because of a cruel and crazy father who stuck her face and hands into a woodstove in a moment of rage.  She has lived with him and his threats for some time; that and her disfiguring scars have made her tough, smart, and self-protective.  Eric and she became friends as social outcasts.  Well-matched intellectually and in their subversive wit, they write an underground newspaper together.  Sarah, however, lands suddenly in the hospital, speaking to no one, making eye contact with no one.  Eric faithfully visits her and, per nurses' instructions, keeps up a running one-sided conversation as if she could hear him.  As it turns out, she can.  She is faking catatonia because the hospital is a safe place, and she has chosen this as an escape route from her father.  Eric and a sympathetic coach/teacher go to great lengths to find Sarah's mother-who, it turns out, can't bring herself to be involved in her daughter's life because of her own overwhelming shame.  Ultimately the father is apprehended, and Sarah, nearly eighteen, is taken into the coach's home and adopted for what remains of the childhood she bypassed long before.  In the course of this main plot, other kids enter the story and in various ways come to terms with serious issues in their own lives, some of which are aired in a "Contemporary American Thought" course where no controversy is taboo.

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Tora lived happily on a mountain farm in Norway until her beloved mother's death  and her own subsequent diagnosis with leprosy, an illness common in early 19^th-century Norway and one that drove her mother to suicide.  Upon diagnosis (at the age of 13) she is taken to the leprosarium in Bergen, from which very few emerge.  Most are left there by families whose fear of the disease leads them to abandon even much-loved children, parents, and spouses.  There, despite the misery of living among many who consider themselves the living dead, she finds a friend in Marthe, the chief cook and general caregiver, a woman of almost boundless kindness; and the "Benefactor," a pastor who is remarkably unafraid of the disease from which most flee, and who befriends Tora as she grows into an unpromising early adulthood.  Another unlikely friend is a noblewoman who has languished, embittered, behind a closed door with a trunk full of her old gowns and several cherished books, including the Bible, The Divine Comedy, Gulliver's Travels, and a popular Norwegian epic about the adventures of Niels Klim at the center of the earth.  She gradually softens toward Tora, who cares for her tenderly as the older woman teaches her to read.  Reading becomes not only Tora's consolation, but that of many of her fellow inmates.  Near the end of her own short, but surprisingly rich life, Tora's father shows up after years of neglect.  Forgiving him, almost against her will, she reaches a new level of acceptance of her own mysterious fate.  The book includes a short afterword about the actual leprosarium in which the story is situated and about Gerhard Armauer Hansen who in 1873 discovered the bacillus responsible for leprosy, the first bacterium proved to be the cause of a chronic human disease.

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In this collection of "clinical tales," to use Oliver Sacks' term, Sue Hall, an experienced neonatologist who spent some years as a social worker before medical school, tells a remarkable range of stories about newborns in the NICU and their parents.  As memoir, the stories record moments in a life full of other people's traumas, disappointments, anxieties, and hard-won triumphs where her job has been to hold steady, find a balance point between professionalism and empathy as young parents go through one of the hardest kinds of loss.  Each story is told with clarity and grace, sketching the characters deftly and offering useful medical information along the way on the assumption that many who read the book will do so because they are facing similar challenges and decisions.  Each story is followed by a two- to three-page "Note" giving more precise medical background and offering further resources for those who have particular interest in the kind of case it was. 

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This remarkable memoir/natural history chronicles the author's observation of a snail that occupies the flower pot at her bedside during a long immobilization due to chronic fatigue syndrome.  For months of relative isolation, she observes the habits of the snail and begins to research the lives, habits, species, and idiosyncrasies of snails by way of getting to know this one in greater specificity.  As she puts it, "When the body is rendered useless, the mind still runs like a bloodhound...," (p. 5) and her mind certainly does.  Peering into poetry and story as well as biology, she discovers both facts and lore about the lives of snails to complement her intimate curiosity about the life of this snail.  Along the way, and very much by the way, she reflects on the nature of her own complex illness, the likely brevity of life she has now to expect, and how to learn from another species how to live in time differently. 

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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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Adam, nine and diagnosed with autism spectrum disorder, wanders into the woods outside his schoolyard with a new friend, Amelia, who is ten and diagnosed with pervasive developmental disorder.  Worried parents and teachers wait until the police discover Amelia's body with a stab wound and retrieve Adam unharmed.  Adam, unable to communicate very directly with anyone, inadvertently provides key clues to solve the mystery, which involves an old friend of his mother's, confined to a wheelchair since an accident he suffered in elementary school.   In the course of recovering from the trauma the whole community is changed, and Adam finds a new friend who will very likely be able to cross bridges into his world and accompany him on his mysterious journey for a long time to come.

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Jacob, a teen with Asperger's syndrome, has long been obsessed with the details of crime scenes and crime detection.  He tends to show up when local crimes are reported, and is sometimes able to offer unnerving insights to forensic analysts.  He works closely with an empathetic, intuitive young woman tutor whose controlling boyfriend has more than once tried to taunt Jacob out of her life, but she and Jacob have a strong, healthy connection that ridicule can't touch.  When she is found murdered, Jacob becomes a suspect, partly because of his proximity to the crime, and partly because the symptoms of Asperger's-avoiding eye contact, twitching, and hesitant or repetitive speech-resemble guilty behavior.  Though he has valuable information to offer as to who actually committed the crime, the process of making himself heard by those disinclined to take him seriously and uninformed about his syndrome, takes time, during which the disrupted lives of those around Jacob, especially his mother, become stories in their own right.

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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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