Showing 51 - 60 of 273 annotations tagged with the keyword "Illness Narrative/Pathography"
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.
Summary: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.
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.
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).
Summary:Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred. One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story. He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes. In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion. The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.
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.
Summary: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.
Summary: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."
Summary: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 20th 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).
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.