Showing 41 - 50 of 271 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Far From The Tree

Solomon, Andrew

Last Updated: Dec-20-2013
Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).

'Far From The Tree' explores the challenges children face in being raised in families where one prominent feature in their identity is forged by something out of their parents' control and generally not part of the family's experience until then. These identities are not 'vertical' (passed down from generations of parents to their children), but 'horizontal', springing up between those who share in that identity at any one time. Solomon begins by wondering about his own relationship with his parents when he was a child discovering his sexuality and ends with his own role as a father, 'the terrifying joy of unbearable responsibility' (702); between the two poles of his own experience, he meets parents and children who have experienced deafness, dwarfism, autism, schizophrenia, severe physical disabilities and diverse gender identities, prodigies, children who were concieved by rape and children who became criminal.  

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Epileptic

B., David

Last Updated: Nov-10-2013
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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A Diary Without Dates

Bagnold, Enid

Last Updated: Oct-24-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

"A Diary Without Dates" is Enid Bagnold's World War I memoir of her experiences over roughly a year and a half as a member of the V.A.D. (Voluntary Aid Detachment), or what we would today call a nurse's aide. Assisting the Sisters (both lay and religious nurses), the author attended to the day-to-day (mostly non-clinical) needs of wounded soldiers (almost entirely British) recovering from often horrific wounds in the Royal Herbert Hospital in Woolwich, 8 miles southeast of London. These poor men often stayed in the Royal Herbert for many months. It is a slim volume which the author wrote at the age of 28 and published in 1918. Divided into three arbitrary divisions ("Outside the Glass Doors", "Inside the Glass Doors", "'The Boys ...'") of roughly equal content (the last devotes, on the whole, more detail to individual "Tommies", referred to as "The Boys"), the book recounts the author's observations and fairly critical views of the relationships between nurses, physicians, V.A.D's, and visitors. Apparently the book was not well received by war authorities, leading to Bagnold's dismissal from her position.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

The writer opens the volume by discussing the ways in which the poetry created by the affected person differs from the narrative form of describing the experience of illness—the classic “pathography.”  The essays in the collection demonstrate, by using examples, some of the unique qualities of the poem as an alternative to a prose narrative progression as well as the ambiguities introduced by the language of poetry. The discussions of the poetry presented provide the reader with guidance to the acceptance of poems in their “own terms” in order to understand the poet’s internal sense of the meaning of illness.  By allowing new and different information to become available for consideration the careful reader may gain new insights into the lives of those who are ill or disabled.

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Black Bag Moon

Butler, Susan

Last Updated: Apr-19-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

Black Bag Moon is a collection (one is tempted to say a "mixed black bag") of short stories (but not clearly "short fictions" - clarified below) about medical patients. The reputed authors are identified as these patients' physicians, who recount these stories in first person. By my math, there are nine authors who narrate stories about 37 patients in 29 chapters. Most chapters have two patients in unrelated stories that sometimes share a theme. Several of the authors know each other as colleagues and two are a married medical couple. Most of the stories occur in Australia or New Zealand but some are in places are as far flung as England, Scotland and unidentified, possibly fictional, islands in the South Pacific. The practitioners are, for the most part, family physicians and care for people of all ages, providing care for everything from breast masses to congestive heart failure to trauma to occupational health to - almost overwhelmingly - mental illness threatening severe violence. The last - serious mental illness -  is, as are all the patients and their illnesses in this volume, almost exotically different from anything most readers of this database are likely to encounter as health care providers or readers. Think Crocodile Dundee or perhaps television's Dr. Quinn or ‘Doc' Adams of Gunsmoke. Or all the above but in the late 20th Century Outback.

Since most of the stories involve working men and women - mainly men - there is a decided flavor of  A. J. (Archibald Joseph) Cronin's The Citadel to the stories; but the peculiar aspect of Australia's frontier pervades each encounter with the patients in this book, whether they are being treated over the radio for breast lumps, being airlifted to the hospital for a badly broken elbow, or becoming demented from environmental toxins in a land and time wherein OSHA and DEP (and the principles underlying them) might as well be acronyms from Mars.

Curiously, for fiction, there are intermittent footnotes to literary (Honore de Balzac, Soubiran) sources, historical figures (Hippocrates) and relevant texts on subjects covered in the stories, e.g., petrol-sniffing, tropical diseases, and physical diagnosis. 

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Handle With Care

Picoult, Jodi

Last Updated: Mar-16-2013
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

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.

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Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

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). 

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Night Duty

Breznik, Melitta

Last Updated: Feb-27-2013
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

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.

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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. 

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

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.

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