Showing 51 - 60 of 276 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
At five years old, Willow O’Keefe has lived a life rich in love and exceptional learning; she reads beyond her years and has memorized a startling compendium of unusual facts. She has also sustained over 50 broken bones, two of them in utero. She has osteogenesis imperfecta, a congenital defect in the body’s production of type 1 collagen that leaves bones very brittle. People with the disease generally suffer many fractures and often other conditions—exceptionally small stature, hearing loss, and bowed limbs. Willow’s parents and older sister have organized their lives for five years around protecting her from damage and helping her heal from her many broken bones. Though Amelia, her older sister, loves Willow, her parents’, Charlotte and Sean’s, intense focus on Willow’s condition often leaves her jealous and disgruntled. Things go from bad to worse when their mother learns that a lawsuit for “wrongful birth” is legal in New Hampshire, and could bring them the money they need to cover Willow’s many medical expenses. Such a step, however, means losing a best friend, since the obstetrician who oversaw Charlotte’s pregnancy and Willow’s birth, and who ostensibly overlooked signs of the disease and failed to warn the parents, has been Charlotte’s best friend for years. A “wrongful birth” suit is based on the claim that medical information about a congenital defect was withheld that might have been grounds for a decision to abort the pregnancy. Though Charlotte insists this drastic step is the best thing they can do to insure a secure future for Willow, Sean finds it repugnant enough finally to leave home. It is clear that even a win will be a pyrrhic victory, and indeed, the outcome is ambiguous, costly, and life-changing for everyone concerned.
This collection of 16 short stories focuses on doctors and patients in San Francisco, where a wide variety of wealth and culture impact the delivery of medical care. Further, there are many restrictions—financial, bureaucratic, ethical, and legal —that limit what doctors can do, especially in cases of patients near death.
The author, Louise Aronson, is a geriatrician who knows this terrain very well, having trained in San Francisco and worked as a physician there. A skilled writer and close observer, she has created dramatic and often funny stories that reveal social and bioethical complexity. About half the stories describe end-of-life issues for the aged and the dilemmas for their physicians and families.
In ‘The Promise,” Dr. Westphall orders comfort care only for an elderly patient who has suffered a massive stroke, but a hospital gives full treatment because there was no advance directive and the daughter told the attending to do “what he thought best.”
When Dr. Westphall sees this barely functioning patient in a skilled nursing facility seven months later, he tenderly washes her face and hair—although the text teases us that he might have been prepared to kill her.
In “Giving Good Death,” a doctor is in jail charged with murder; he has fulfilled the request of Consuela, a Parkinson’s patient, to help her die. When it appears that she may have died for other reasons, he is released, his life “ruined.” He leaves San Francisco, and, we surmise, medicine. In three other stories, doctors also leave the profession: the cumulative stresses of work and family and/or a sense that it’s not the right path bring them to that choice.
On the other hand, one of the longer pieces “Becoming a Doctor” celebrates the profession, despite all the rigors of training including sexism against women.
The stories bring multicultural insights; we read of people from China, Cambodia, Latin America, India, Russia, and the Philippines. Some are African-American; some Jewish, some gay. These different backgrounds color notions of health, death, and medical care. There are also pervasive issues of poverty and, at another extreme, professionalism that is hyper-rational and heartless.
Indeed, a recurring theme is care and love for people, no matter their background or current health status. A surgeon realizes (regrettably too late) that the secret of medical care is “caring for the patient—for anyone—just a little. Enough, but not too much” (p. 135).
Summary:The first person narrator of this debut novel is a young pathologist, a woman who relates the story of her family over the course of the book. The story is bleak: a young German woman marries an Austrian soldier in WWII, moves to Austria with him and has three children - two sons (one of whom dies as a youth following abdominal surgery) and the narrator-daughter. In a running commentary, almost hallucinatory at times, the narrator offers brief descriptions of a traditional preliminary internship year during which she acts as a pathologist, cares for in-patients, and even makes a futile ambulance call to a fatally injured man in a freight yard. Yet, virtually the entire novel revolves around her family:her father (whose tuberculosis is briefly described), a factory worker with dreams of inventing an electronic security relay (never realized); intermittent holidays of evanescent family happiness; and a long threnody about her father's eventual death at the end of the book from a hopeless and domestically abusive alcoholism. Her detailed description of his death traumatizes everyone around her and leads to a rupture in the family.
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: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: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 19th-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.
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.
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: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).