Summary:

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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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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The Hawaiian lawyer Matt King (George Clooney) has two big dilemmas. His large, extended family is thinking of selling their inherited 25,000 acres to a developer—and he must help the consortium decide what to do for the benefit of all. Worse, his wife Elizabeth is in a coma on life support following a severe injury from water skiing. He is trying to parent their two daughters, aged 10 and 17, but the girls are unruly and sulky. He thinks that they are acting out because of their mother’s absence.

The doctors tell Matt that Elizabeth will never recover. According to her living will, she does not want to be left on a machine; they must pull the plug. Matt confides in the older daughter who then informs him that Elizabeth had been having an affair. Her sullenness is sublimated anger with her mother for—among other things—how Matt had been treated. Other family friends know of the infidelity and identify the lover as Brian Speer (Matthew Lillard) a real estate agent living on Kaua’i.

Amazed by his wife’s secret, Matt overcomes his sense of betrayal and resolves to respect her feelings, find the lover and give him a chance to say goodbye. The little family flies to Kaua’i looking for Brian and to deal with the sale of the family estate.  Matt meets Brian’s beautiful wife Julie– who is sympathetic to his situation, not knowing of the connection with her husband. When Matt confronts Brian, he is surprised that Brian has no interest in saying good-bye to Elizabeth. What, for Elizabeth, had been a life-changing relationship, for Brian, was a fling that “just happened” and which he wants to forget. He is terrified that Julie will discover his infidelity and leave him.

Matt contends that “things do not just happen.” Everything happens for a reason. Wondering what his own role had been in Elizabeth’s reasons for taking part in the affair, Matt goes home for her death. But he also decides not to sell the family estate and keep it as a nature preserve over the opposition of many cousins.  Brian never appears, but Julie has learned of his infidelity and she comes to the hospital out of duty and horror. It is not clear if her marriage will survive.

In the final scene, Matt and his daughters are in a little boat off Waikiki where they spread Elizabeth’s ashes.

 

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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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The foreground of this painting is dominated by a "pieta" type grouping. One woman hovers closely over what appears to be a dying man, while another comforts a small child. This part of the canvas is underlighted. The colors are rich earth tones. The figures are non-Caucasian.

In the background, in harsh light, is a group of identical looking starkly white men. In fact, their faces are almost skeletal. All are in suits, three are seated, with four others standing behind the seated figures. They look very much like a "tribunal."

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This is an aerial view of a comatose patient being force-fed by a funnel leading directly into her stomach. Surrounding the consultation table are six (identifiable) black-robed supreme judges gleefully pouring nutritious foods (grapes, fish, Quaker Oats, peanut butter, water and 7-Up) into her. Two tiny symbols, the scales of justice and a red-white-and-blue eagle contribute to the otherwise empty courtroom decor.

In the upper right corner, barely visible, is an open door with a "Keep Out" sign dangling from its knob, through which a doctor and nurse peer in. Four tiny red paper-doll figures holding hands, symbolizing the family, are also by this door. Hanging precariously over the patient and consultation table is an ugly, large, bare 25-watt light bulb.

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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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This documentary is a film biography of American artist, Alice Neel (1900-1984), directed by her grandson, Andrew Neel. The film utilizes interviews with art historians; comments and interviews by Alice Neel herself; comments by her two sons and other family members; interviews with some of those that the artist painted; still photographs and other archival materials; and most spectacularly, displays of many Neel paintings. There are annotations of several important Neel paintings in this database. This film or sections of it would make a good accompaniment to discussions of those works.

Neel was a complex person and the film pays attention to this complexity. She lived what was considered to be a "bohemian" life, not following social conventions of the times and determined to pursue her art. There was early tragedy: marriage to a Cuban artist eventually disintegrated but produced two girl children, one of whom died as a baby and another who was kept in Cuba by the father and his family. These events were catastrophic for Neel and resulted in psychiatric hospitalization. For many years her life was one of poverty. In the 1930s she was funded to paint by the Works Progress Administration and later survived on welfare in Spanish Harlem while raising two sons born "out of wedlock". There she painted neighbors, and others who lived in that community. During the McCarthy era in the 1950s she was under investigation by the FBI for her occasional association with the Communist Party. She struggled to have her work recognized: although her paintings date back to the 1920s, it was not until 1974 that a retrospective exhibit of her art was presented by an important museum, the Whitney Museum of American Art. By that time she was painting portraits of well known individuals like Andy Warhol.

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In 1953 Alice Neel created a series of ink and gouache drawings depicting the last weeks of her mother's life, which were spent in a New York city hospital. One of these is at the Robert Miller website linked to this annotation. In the drawing, a black nurse comforts a prone elderly lady. The pale hues of the painting--blue, black, white--evoke a somber mood and imply sickness. This sense of despair is augmented by a harsh cityscape background beyond a dark river, which the viewer sees through a window.

Compassion counters these desolate surroundings, however, for a bond is apparent between the nurse and elderly patient. The nurse's hands rest on the patient in a partial cradling gesture, and the trajectory of the lines made by the nurse's arms and hands and the elderly patient's flowing hair establishes a visual and emotional link. The connection between the two figures is supplemented by the thin smiles on both women's faces.

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A few years into their marriage, while their children are still young, Sara and Phil discover that he has an aggressive form of cancer.  He undergoes grueling surgery, but the cancer returns.  For Sara the prospect of Phil's death reawakens the trauma of losing her father when she was twelve.  Phil does his best to live a normal life between chemotherapy treatments and further surgeries, and even enters an experimental treatment in hope of seeing his children grow up.  His greatest pleasure in life is sailing, and one of his deepest hopes for his remaining time with his family to enjoy sailing with them in the ocean near their New England home.  But Sara finds it scary, even though she gamely learns to crew, and the kids never take to it.  So Phil sails with friends, and sometimes alone.  After learning that the cancer has continued to spread despite every medical effort, Phil decides to take one last sailing trip, this time alone, on the ocean.  There he has to make a decision:  his intention is simply to sail until his body gives out and die on the boat he loves, sparing Sara, he thinks, having to watch him die a slow and painful death.  But he begins to realize that letting her see him through might, after all, be a better way to go.  As the novel ends, he turns the boat, now quite far from land, toward home.  

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