Showing 131 - 140 of 304 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
This unusual story, beautiful and overwhelmingly sad, is set in Sicily on the craggy and barren island of Lampadusa surrounded by the bluest of seas. Everyone in the small fishing and canning village may be related; certainly, this is a place where secrets are not possible. Grazia (Varria Golino) appears to be the loveliest and most loving mother and wife, although her carefree, even childlike behavior is foreboding. The camera loves her and so do viewers who are ravished by her beauty and innocence.
With children positioned on the back of her Vespa, she and they escape to a deserted beach where she swims topless with her children; later, she releases hundreds of howling stray dogs from their inhumane confinement. Not surprisingly, spied-upon actions such as these produce critical response from more conservative neighbors whose norms are less capricious.
When signs of instability and manic depression become apparent, the community joins together to suggest hospitalization to her very supportive and heart-broken husband (Vincenzo Amato). She, like the caged-up dogs, seems to deserve the kind of freedom epitomized by her trips to the beach and will not, we sense, survive medical "imprisonment."
At this juncture, just as her wings are to be clipped, the story’s unexpected turn forces the mourning village to wonder about human frailty and reality. The ending, ultimately unclear and haunting, is a celebration of imaginative madness and ephemeral beauty. Visually stunning.
The story is based on an actual 1950's trip by two university friends, Ernesto 'Che' Guevara (Gael Garcia Bernal) and Alberto Granado (Rodrigo De la Serna). Guevara is studying medicine, Granado biochemistry. They plan to travel from Buenos Aires across the Andes Mountains to Chile, Peru, and, then, to Venezuela. Before too many miles their derelict 1939 motorcycle fails, and the two young men continue by whatever means is available. The journey intent is one of adventure--drinking, meeting women, seeing the world.
The young men do discover South America's impressive natural beauty but more strikingly, their eyes and sensibilities are directed to abject poverty and shocking injustices. These blatant inequities, as well as an extended period of time in a leper colony, contribute to the reframing of their original happy-go-lucky adventure and explain, in part, the impulses that eventually would shape Guevara's role in the Cuban Revolution.
Oscar, the narrator of this fresh fictional gem, is ten years old. Because his form of leukemia has not responded to treatment, he has been living in a French hospital for a very long time. His parents, who bring him gifts and surely love him, are uncomfortable during their infrequent visits. Dr. Dusseldorf and the nurses are kind, but indirect and distant in their communications with him. Because no one talks to him about his illness or what is likely to happen, he feels isolated, alone, and miserable.
When Mamie-Rose, a very elderly hospital "pink lady" (hospital volunteer) with an exotic past, enters Oscar's life, she brings honesty, warmth, and comfort to the lost child known as Bald Egg. Guided by this incredible person--a blunt-spoken, irreverent woman who touches him, kisses him, and tells him wondrous stories of her wrestling feats--the boy grows stronger. Who wouldn't under the influence of the Strangler of Languedoc?
Of course Oscar is going to die. In addition to her generous companionship and her introductions of him to other children in the hospital, Mamie-Rose suggests letters to God as a way of feeling less lonely. "So God, on the occasion of this first letter I've shown you a little of what my life in the hospital is like here, where they now see me as an obstacle to medicine, and I'd like to ask you for clarification on one point: Am I going to get better? Just answer yes or no. It's not very complicated. Yes or no. All you have to do is cross out the wrong answer. More tomorrow, kisses. P.S. I don't have your address: what do I do" (65).
With Mamie-Rose treating him like a real kid, "move your but . . . we're not ambling along like snails" and Oscar scripting very candid letters to God, the first-person story about loneliness, love, and compassion is presented with spirited imagination. Oscar's story is quite extraordinary--and unforgettable.
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.