Showing 121 - 130 of 291 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.
Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.
Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).
Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.
By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.
Summary:Summary: This very welcome poem concerns "twelve older men in shirt sleeves," a group of men with prostate cancer. The narrator, one of the men in this "private brotherhood" suggests the difficulty and reluctance of many men to recognize out-loud their mutual circumstances: "Ever notice how no one parks / in the Cancer Center zone." This line sets the tone; the men are vulnerable and afraid. From time to time they gather for support from one another and from the meeting's scheduled speaker. The reader has little difficulty imagining the collective angst and the grasping of hope shared by the participants leaning together in their mutual storm.
This story details several months in the life of a thirteen-year-old with incurable kidney disease and of her extended family--the policeman father who has cared for her since her mother ran off, the mother who reappears in time to learn she is the most likely donor, two sets of grandparents and several of the father's close friends. Two women in the father's life find their romantic attachments to him complicated by his role as his daughter's caretaker.
As Mary Grace's health deteriorates, her maturing accelerates. Each of the principal characters has to come to terms not only with impending loss, but with how this crisis reconfigures old patterns of family conflict and dependency. The story continues after her death as focus shifts to the father's grief, mourning, and new empathy with victims of accident and loss.
This play in eight scenes presents the fictionalized character of Alice James, sister of Henry and William James, who after a sickly childhood, succumbed at 19 to a variety of vague and recurrent illnesses that made her a lifetime invalid. She died at 43 of breast cancer.
In a series of encounters (with her nurse; her father; her brother, Henry; several Victorian female figures: Margaret Fuller, Emily Dickinson, and mythological figures from Victorian fantasy fiction and from Parsifal; and a burglar), as well as a long dramatic monologue, her various forms of internal conflict are hilariously and poignantly articulated. They converge on the implications of her recurrently deciding whether or not to get out of bed and do something, and her confusion, often discussed by biographers and critics, about her place in her brilliant family, her vocation as a woman, and her own desires.
Dr. Paul Brand, who grew up son of English missionaries to South India, achieved world renown for his research on leprosy and related research on the dynamics of pain. This book, one of several of his reflections on physiology, combines autobiography, stories of research, and reflections on pain and pain management. The three topics roughly correspond to three discrete sections.
It opens with a story of the early death of a child with a rare neurological dysfunction that made her insensitive to pain. Brand's long work with victims of leprosy in India and then in Carville, Louisiana, gave him wide exposure to the consequences of life without adequate pain. Having spent 27 years in India, 25 years in England, and 27 years in the U.S. before writing this retrospective, many of his reflections include observations about cultural variables in perception of pain, how pain is communicated and managed, and how people deal philosophically with the problem of pain.
In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.
The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.
At the age of 72, Lily Maynard finds herself suddenly famous for a memoir she has published about the disintegration of her marriage years before at the height of the civil rights movement, the women's movements, and the religious shifts of the 1960's. The book brings two young women into her life: one a journalist who wants to do a story on her, the other an African-American historian who takes an interest in the connections between her personal history and the pressures of the civil rights conflicts.
Simultaneous with her cresting notoriety is an exacerbation of the Parkinson's disease which makes it necessary for Lily to move in temporarily with her son and his wife while awaiting a place in a retirement home. Half her face is paralyzed; she has difficulty feeding herself; and her extreme fatigue makes it hard to conduct interviews without dissolving into a fog of incommunicable feeling.
Each of the younger people involved in her life is driven to come to terms with his or her own life in new ways, especially her son, who finds complex feelings surfacing after years of emotional estrangement. Ultimately, her story told, Lily quietly exits the family before relocation to a home by committing suicide with an overdose of medication. In the aftermath Alan's grief gives him a new understanding of his mother's life and his own.
Dominic Birdsey's identical twin, Thomas, is paranoid schizophrenic. With proper medication he can work at a coffee stand, but occasionally he has severe outbreaks. Thinking he is making a sacrificial protest that will stop the war in the Middle East, Thomas cuts off his own hand in a public library. Dominic sees him through the ensuing decision not to attempt to reattach the hand, and makes efforts on his behalf to free him from what he knows to be an inadequate and depressing hospital for the dangerous mentally ill.
In the process, Dominic reviews his own difficult life as Thomas's normal brother, his marriage to his ex-wife which ended after their only child died of SIDS (Sudden Infant Death Syndrome), and his ongoing hostility to his stepfather. First in Thomas's interests, and then for his own sake, he sees a gifted Indian woman employed by the hospital as therapist. She helps Dominic come to understand Thomas's illness and the family's accommodations or reactions to it in terms of the whole family system.
In the course of treatment, Dominic discovers sexual abuses taking place in the hospital and helps to expose the perpetrators. He succeeds in getting Thomas released, but Thomas soon commits suicide. After Thomas's death Dominic finds out about their birth father--a secret their mother had shared with Thomas, but not with him.
He also learns that the woman he has been seeing is HIV-positive. She asks him to keep her baby if she dies. At first he resists, but later, having found his way back into relationship with his wife, he takes the baby. The book ends with several healing events that leave Dominic able to cope with the considerable loss, failure, and sadness in his personal and family history.
Eleven-year-old Amy has been hiding cookies beneath her bed, drinking gallons of liquid to slake her thirst, getting headaches, feeling irritable, and failing to grow though she's been eating huge meals for months by the time she faints and is taken to the hospital. There she is diagnosed with Type 1 diabetes. Though she feels disoriented and angry, she is immediately put into a training group with other kids around her age who have been recently diagnosed.
She has to learn how to maintain a carefully balanced diet and how to give herself insulin injections. The male nurse who teaches them is himself a diabetic as well as a competent, cheerful young man who takes the edge off the experience. He makes it clear to Amy and the others that the primary responsibility for their health maintenance routines lies with them personally.
After release from the hospital, Amy begins to deal with the social adjustments her disease demands. Her brother and parents are helpful, but uncertain about how much to change their own eating habits to accommodate her. Her younger sister finds the accommodations trying and unfair. Amy's friends also have learning to do.
It helps her that she knows a few other diabetic kids, including Coby, a boy who has struggled with his own resentment and the consequences of sloppy monitoring of his condition, but has learned how to control his diet for the sake of staying on the baseball team where he's a star player. Their friendship helps Amy transition into "normal" life hopefully.
Richard (Kenneth Branagh) is assigned alternative service as a consequence of a misdemeanor. A social worker connects him with the mother of a young woman, Jane (Helena Bonham Carter), who is suffering from Lou Gehrig’s disease. Feeling reluctant and unequipped for such responsibility, he starts taking her on tame outings suggested by her mother. Initially she is hostile and resistant; gradually he gives way to her insistence on unpermitted activities: he takes her on a carnival ride, drives her around in his jeep, makes her dinner at his shabby rural cottage, about all of which the mother remains clueless.
Jane acknowledges that he is the only one who treats her like an adult. In a rare moment of vulnerability, she asks him to help her lose her virginity, not necessarily to "do the awful deed" himself, but to help her hire or find someone who will give her an experience of sex before she gets to the point where it’s impossible. He refuses, she won’t see him, and for a time her mother tries to find another caregiver--a hopeless failure--a woman who talks down to her.
Richard attempts other community service and runs into comic difficulties attempting to help old women, clean toilets, and finally retreats to his outpost where he is building a plane out of scrap metal and junk in a barn. He’s insolvent, but determined to carry through his project, if only, like the Wright brothers, to keep it aloft for 12 seconds. His landlord announces that he’s selling the place and Richard and his airplane will have to clear out within a month. This impels him to try his biplane.
In the meantime, Jane searches internet dating agencies, advertising herself as a "hideously crippled woman" seeking sex, but gives it up. Missing her, Richard finally comes to her home and consents to take her to "get shagged" if she won’t blame him for any of the consequences. They go to London and seek agencies for the disabled that are willing to help her experience sex. The only positive response she encounters is at a nightclub specially for the disabled. She’s horrified.
They go upscale, to a hotel where "gigolos" might be available. Richard hilariously serves as her go-between. He finds one who, alas, charges 2000 pounds. Finally she says, "Okay, then, you’ll have to do it, Richard." This brings him to acknowledge that he’s "a cripple," meaning that he’s been impotent for some time. Instead of offering her himself, he offers to rob a bank. He doesn’t, however, go through with the robbery, but returns to take Jane home with him where she remains as she’s dying.
Ultimately, Jane and Richard both discover that love and friendship are what matter. He takes her up for the one flight his plane is capable of: a few glorious minutes over the sheepfields. The experience caps her life and seems to promise a beginning of his. She tells him, "You have a future, Richard. Either take it or switch bodies with me." She leaves him a final message on the voice machine which is the only way she can communicate, encouraging him to claim his life, and reflecting, "The only life you can have is the one that is available to you."