Showing 131 - 140 of 297 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
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."
The narrator, who has been a counselor at a summer camp, brings a friend home to meet her computer-wizard older brother, Eric, but finds him acting very strange--overprotective, defensive, and aggressive. Later his inexplicable behavior shows up at the dinner table. He is unreceptive to parents' inquiries. Readers learn some of the delusional thoughts from italicized passages interspersed with the narrative of a family recognizing mental illness and making treatment decisions.
Eric is hospitalized after an episode in which he threatens the family with a kitchen knife. He is released on medication in a matter of weeks, but continues to behave strangely if not dangerously--he asks his sister at one point if she knows any "secret numbers"--and she realizes his new condition is not simply going to go away, but has opened a whole new chapter in family life and requires new and careful adaptations.
Geneva Jordan, a successful stage actress in New York, reluctantly agrees to stay for a month with her thirteen-year-old nephew who has Down syndrome so that his parents can take a long-postponed and much-needed vacation. She is unmarried and has no children herself, has always found herself a little intimidated about close interaction with the boy, and leads a complicated personal and professional life in New York which the requisite month in Minnesota will interrupt.
Nevertheless, she takes on the job and gradually finds herself adapting to rural life, substitute parenthood, and the special needs of her nephew. She makes friends with the mother of Rich's best (and only real) friend, Conrad, who has cerebral palsy. After the month is over, she returns to New York, only to realize that her life lacks a dimension that caregiving gave it.
She also realizes she left a good man behind in Minnesota--a local divorced father who has become an unsought love interest. Nevertheless, she remains on stage and in the city until the death of her nephew's friend calls her back to Minnesota, and to the man with whom she can finally imagine taking on a family life of her own.
Keely, whose three "best friends" are a dominant clique in their class, notices that a classmate, Anya, appears to be wearing a wig. The girls confer about it at lunchtime, wonder whether to ask about it, and theorize that she may have cancer and be undergoing chemotherapy. Stef, long the most aggressive among the four friends, suggests that Keely talk with Anya and find a way to determine whether it is a wig, but Keely refuses, recognizing in Anya, whom she rarely notices, a quality of loneliness she hadn’t seen before.
Their curiosity is satisfied when Anya’s wig comes off during a gym exercise and she runs out and remains absent for several days. Keely decides to visit Anya and learns that she has a rare disease, alopecia areata, which is painless and otherwise harmless, but causes hair to fall out, sometimes all over the body. When she asks if she can help, Anya replies, "Not unless you want to give me your hair."
Keely researches the disease for class and finds that there is a foundation that collects long hair for wigs for patients suffering from Anya’s condition, so she cuts off her own long hair and encourages classmates to do the same in a gesture of solidarity with Anya, in the process defining a new independence from the clique of friends who have too long shaped and confined her judgments of others.
Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.
One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."