Summary:

The year is 1990; a lump in the groin which Harvey had ignored has enlarged and his wife convinces him to have it checked out. It turns out to be a lymphoma and thus begins the yearlong chronicle. Intertwined with the couple's struggle with diagnosis and treatment is their decision to buy a home, and Joyce's work with an international group of teenagers who have survived war. However, the bulk of this unconventional work depicts in a stark and straightforward way the energy necessary to survive not just cancer, but cancer treatment.

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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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Jerome Lowenstein is a nephrologist, author, and founder of the Bellevue Literary Press and the Humanistic Aspects of Medicine Education seminar program at the NYU School of Medicine.  In this thoughtful and illuminating book of essays he explores the patient/physician relationship in a world where medicine has embraced technology and scientific advances in the laboratory at the risk of neglecting the humanistic underpinnings of the field.

Dr. Lowenstein graduated from medical school at NYU in the late 1950s and spent nearly his entire professional career at NYU Medical Center and Bellevue Hospital. When he was a resident, long before work hour limits were instituted, the house staff gathered in the cafeteria at midnight to dine on the days’ leftovers.  This communal meal “provided a fine opportunity to communicate with colleagues directly, rather than by beeper and phone, about many of the days ‘medical leftovers,’ ” (1) sharing information as well as the frustrations and rewards of caring for patients.  “The Midnight Meal” poses the challenge of retaining the core of relationships, both between patient and physician and among colleagues in the rapidly changing world of medicine today.

In the essay, “Can You Teach Compassion,” Dr. Lowenstein tells his readers about the student who responded to the question with “I don’t know if you can teach compassion, but you surely can teach the opposite.” (13) The student was referring to how students become “desensitized” during their clinical years to the suffering of their patients, sometimes to the point of using derogatory terms to describe them. Dr. Lowenstein argues that teaching attendings can and should encourage students to learn about their patients. He writes how he once interrupted an intern who began to present a case by stating: “This is the first hospital admission of this thirty-five year old IVDA.”  Dr. Lowenstein asks: “Would our thinking or care be different if you began your history by telling us that this is a thirty-five-year-old Marine veteran who has been addicted to drugs since he served with valor, in Vietnam?” (17) Learning about the lives of their patients, Lowenstein emphasizes, does not detract from the clinical picture, but rather enhances it.  

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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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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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It started with a faint. Javier Miranda, a generally healthy 69-year-old man living in Venezuela, attributes his episode of dizziness to the summer heat and humidity. His only child, Andres Miranda, is a physician whose intuition tells him something is seriously wrong with his father. The doctor obtains blood work and schedules a CT scan and MRI of the brain for Javier. The medical work-up reveals rapidly progressing lung cancer with metastases to the brain. Violating his credo of complete honesty with patients, Dr. Miranda lies to his father and reassures him instead. Dr. Miranda's mother died when he was just 10 years old. Now his father's remaining lifespan has dwindled to a couple of months. The doctor must find a way to break the bad news to his dad.

Meanwhile, Dr. Miranda receives multiple messages - phone calls, e-mails, and letters - from a difficult and persistent patient. Ernesto Duran suffers from dizzy spells and multiple other symptoms. It could be panic disorder or maybe Ernesto is a hypochondriac. Dr. Miranda instructs his office secretary, Karina, to deal with these communications and remind the patient that there is nothing more that can be done for him. When Ernesto admits he is stalking the doctor, Karina worries. Pretending to be Dr. Miranda, she begins corresponding with Ernesto via e-mail. Before long, Karina develops symptoms similar to Ernesto's and experiences empathy for him.

When his physician-son finally summons the courage to announce the terminal diagnosis, everything changes for Javier - his mood, personal relationships, and awareness of his body's metamorphosis. He perceives the smell of rot associated with his physical deterioration. Dr. Miranda's frame of mind also changes as he copes with his father's impending death. Javier's deathbed request is simply for his son to shatter the terrible silence by talking about the two of them.

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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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Dr. Jennifer White, age 64, is read her rights in a Chicago police station. But how much does the retired orthopedist who specializes in hand surgery really understand? Dr. White has Alzheimer's dementia. Her score of 19 on a mini-mental state examination (MMSE) is consistent with a moderate degree of cognitive impairment. She is questioned about the death of a neighbor, 75-year-old Amanda O'Toole, who lives 3 houses away. Amanda happens to be Dr. White's best friend and the godmother of her daughter. Amanda died at home, the result of head trauma. Four fingers of her right hand were cleanly and expertly chopped off. It seems that Dr. White is genuinely incapable of recalling whether she committed a murder or not. The physician is not charged with the crime but remains a suspect.

Dr. White's memory and mind are no longer reliable. In her lucid moments, she jots down notes in a journal. She dubs the notebook her "Bible of consciousness" [5] and it assists her in filling in the blanks of her past life. Her husband James has died. She has approximately $2.5 million of financial assets. Her two adult children - Mark and Fiona - squabble.  Throughout the course of her disease, family secrets are revealed and intimate details are exposed. Relationships fray.

Despite a slew of prescription medications (galantamine, an antipsychotic, an antidepressant, and a benzodiazepine as needed), Dr. White's mental status and behavior deteriorate. Her confusion, wandering, forgetfulness, and episodes of agitation worsen. The story is structured in four sections, based on the residence of the protagonist: First is Dr. White's time in her own home aided by a live-in caregiver, Magdalena. Next is her stay in an assisted living facility. Then she briefly escapes from that place and has a 36 hour adventure of sorts. Finally, Dr. White is incarcerated in a state mental health facility.

Ultimately, the circumstances of Amanda's death are made known. And while Dr. White did not kill her best friend, the surgeon was present at the scene with a scalpel in her hand. Another character was there too.

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