Summary:

Elie Wiesel, 82-years-old, has pain that he thinks is in his stomach or esophagus, perhaps caused by his chronic acid reflux.  After tests, however, doctors diagnose cardiac illness and insist on immediate surgery. Reluctant to go to the hospital, Wiesel dawdles in his office. When he does go, doctors believe a stent will do the job. Instead, the intervention becomes a quintuple bypass.

This brief memoir—a scant 8,000 words—presents the “open heart” of a gifted writer as he contemplates his open-heart surgery, his past life, and the future. He asks himself basic, even primal questions about life, death, and the nature of God.            

Although a man with an extraordinary career—prizes, fame, honorary doctorates, friends in high places, professorships—Wiesel experiences and describes ordinary feelings of anxiety, pain, and doubts about his cardiac emergency and possible death. His stylistic gifts describe frankly and vividly a patient’s fears. As many have observed, patients with a serious disease have two difficulties, the disease itself and their emotional responses to that disease.  As Wiesel is wheeled into the OR, he looks back on his wife and son; he wonders whether he will ever see them again.            

He writes that his “thoughts jump wildly; I am disoriented.” He recalls a friend undergoing similar surgery; she died on the table. He says he can’t follow the jargon of physicians. The texture of the prose is rhapsodic, jumping from the present to memories, many of them about war, his past surgeries, or important family events. This short book has 26 “chapters,” some just half a page; they are like journal entries.

As he slowly recovers, he feels pain and has visions of hell, including the concept of ultimate judgment. “Evidently, I have prayed poorly…; otherwise why would the Lord, by definition just and merciful, punish me in this way?” (p. 38).  Because he has a “condemned body,” he feels he must search his soul. In the longest chapter of the book, he reviews several of his writings.

Wiesel asks some of the questions from his famous novel Night (La nuit, 1958).  If there is a God, why is there evil? Auschwitz, he says, is both a human tragedy and “a theological scandal” (p. 67). Nonetheless, he affirms, “Since God is, He is to be found in the questions as well as in the answers” (p. 69).

At the end, he still has some pain but feels much gratitude for his continuing active life and for his grandchildren.

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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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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 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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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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A small stone island sits in the middle of a body of water. No other land is visible. Within the apparently naturally formed stonewalls that constitute the island’s perimeter, vestiges of man-made dwellings are apparent. On the left-hand embankment, the front of what appears to be a white house is visible albeit only slightly. On the other side of the island, doorways or windows have been carved out of the rock itself. Below the front most door some white paint has been added, as though to signify the fading presence of man’s creations on this island.

The center of the island opens up as a bay of sorts. In the middle of the bay and island, large vertical trees similar in appearance to Cyprus trees stretch all the way up past the stone and to the very top of the painting. Nothing of the island is visible through the dense trees. One solitary boat with two passengers makes its way into the middle of the bay. One passenger controls the oars while the other stands erect, as though a statue, and is completely white. At the front of the boat sits a box that looks like a coffin.

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A female figure stands facing us, unclothed, her left side darker than her right, occupying the middle of the frame. She is surrounded with images from the process of human reproduction. The largest of the former is the well-formed male fetus in the frame’s lower left, which is connected by a thin umbilical cord wrapped around the figure’s right leg to a fetus in an early stage of development in the figure’s abdomen, which we see as if by x-ray.

Tear-shaped droplets of blood drip down the figure’s left leg and soak into a dark mass in the earth, where they nourish the roots of several plants. A tear rolls down each of the figure’s cheeks. Just above her to her left is a weeping crescent moon. Below it is an artist’s palette that the figure holds up with a second left arm.

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An empty, old, red chair sits at a three-quarter view. One leg is cut off by the painting's frame. The chair is the only subject visible in the foreground, suggesting that the room it occupies is empty. In the composition's center is a window with a stark black blind pulled nearly halfway down. The view outside the room reveals two windows in a building across the way. These windows are stacked vertically, one on top of the other, and are nearly identical in appearance.

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Helga Crane is a beautiful young teacher in Naxos, a southern American boarding school for black students. She is half Danish on her mother’s side, half African-American on her father’s side. Her only family is an aunt and uncle in Denmark.

Dr. Anderson, a distinguished black teacher professes love for her, but she feels stifled by him and the vision of their life ahead. She quits her job and flees to New York and the exciting cultural life of Harlem.

She thrives in that environment and men flock to her. There she meets James Vayle whom she likes and the Reverend Pleasant Green whom she does not—but once again, when Vayle proposes permanence, she flees to Copenhagen.

There, she spends an extended visit with her Aunt Katrina and Uncle Poul. At first the Danish couple are startled by her blackness, but they quickly adapt and enjoy the elevated status conveyed by having this intelligent, beautiful black woman in their world. Upon receiving another offer of marriage, Helga grows suspicious of her family’s use of her and flees once again.

She returns to America where she marries the Reverend Pleasant Green, although she doesn’t love him.  As babies come in succession, Helga develops severe post-partum depression. 

 

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