Showing 31 - 40 of 226 annotations contributed by McEntyre, Marilyn
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.
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: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.
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: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:Adam, nine and diagnosed with autism spectrum disorder, wanders into the woods outside his schoolyard with a new friend, Amelia, who is ten and diagnosed with pervasive developmental disorder. Worried parents and teachers wait until the police discover Amelia's body with a stab wound and retrieve Adam unharmed. Adam, unable to communicate very directly with anyone, inadvertently provides key clues to solve the mystery, which involves an old friend of his mother's, confined to a wheelchair since an accident he suffered in elementary school. In the course of recovering from the trauma the whole community is changed, and Adam finds a new friend who will very likely be able to cross bridges into his world and accompany him on his mysterious journey for a long time to come.
Summary:Parts of medical history read like detective novels. The discovery of the source of cholera by Dr. John Snow in London in 1854 is one of those episodes. The Ghost Map tells the story of Snow's pioneering work in what have now become standard epidemiological methods. Tracing a cholera outbreak to a local pump in a poor section of London involved many door-to-door visits working with people who weren't always cooperative, incurring the suspicion and/or ridicule of both them and the medical professionals with whom he worked. In the course of the story the author offers reflections on the organization of cities and on public hygiene. Snow, an out-of-the-box thinker, also helped develop surgical anesthesia.