Summary:

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).

View full annotation

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.

View full annotation

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. 

View full annotation

Summary:

Eric Calhoune is known to his classmates as "Moby" because of the extra weight he has carried since grade school.  Though his mother is young and athletic, he has inherited the body type of the father he's never known.  Now, in high school, the fat is turning to muscle under the discipline of hard swim team workouts.  But that transformation has been slow in coming, since for some time Eric has taken on a private commitment to "stay fat for Sarah Byrnes."  Sarah, whose name is a painful pun, was severely burned as a small child not, as we are given to believe early on, because of an accident, but because of a cruel and crazy father who stuck her face and hands into a woodstove in a moment of rage.  She has lived with him and his threats for some time; that and her disfiguring scars have made her tough, smart, and self-protective.  Eric and she became friends as social outcasts.  Well-matched intellectually and in their subversive wit, they write an underground newspaper together.  Sarah, however, lands suddenly in the hospital, speaking to no one, making eye contact with no one.  Eric faithfully visits her and, per nurses' instructions, keeps up a running one-sided conversation as if she could hear him.  As it turns out, she can.  She is faking catatonia because the hospital is a safe place, and she has chosen this as an escape route from her father.  Eric and a sympathetic coach/teacher go to great lengths to find Sarah's mother-who, it turns out, can't bring herself to be involved in her daughter's life because of her own overwhelming shame.  Ultimately the father is apprehended, and Sarah, nearly eighteen, is taken into the coach's home and adopted for what remains of the childhood she bypassed long before.  In the course of this main plot, other kids enter the story and in various ways come to terms with serious issues in their own lives, some of which are aired in a "Contemporary American Thought" course where no controversy is taboo.

View full annotation

Summary:

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.  

View full annotation

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. 

View full annotation

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 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.

View full annotation

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. 

View full annotation

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."

View full annotation

Summary:

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.

View full annotation