Showing 181 - 190 of 278 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
Summary:This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.
Summary:Knapp describes how she gradually became an alcoholic, drinking more and more, until she couldn't live without alcohol. She found drinking to be the most important relationship in her life; she loved how it made her feel, how it coped with her fears and worries. When family and friends spoke to her about her drinking, she made promises to them she couldn't keep. Finally one time while drunk she was carrying two children accross the street when she fell. She could have killed them. Three months later she checked into rehab and gave up drinking. She used the support of Alcoholics Anonymous to help her stay sober and to gradually learn how to love people, instead of alcohol. Her need for protection and for escape, which alcohol gave her, had to be replaced with an honest facing of problems and with social skills. This memoir also describes her struggling with anorexia.
This is an autobiographical novel in which the author relates the emotional life of a childhood and young manhood lived with cerebral palsy. The disease is never named (except on the fly-leaf of the book cover); its impact is revealed through incidents and personal relationships experienced by the protagonist in a narration which reflects by its style, the intellectual maturation from childhood to adulthood.
As a child, Felix spends long periods in a children’s home, to receive therapy and educational training, and to relieve his family of the strain of his care. Felix learns to walk with painstaking effort and surges of determination, but the reactions of others, even of his mother, make clear that he is not normal. His social life is complicated by anti-semitism and by just being from a different religious background. With puberty comes sexual longing and the need for female affection, and eventually the painful recognition that his desire will not be reciprocated. What saves Felix is the life of the mind and a love of literature and writing which a few influential mentors and a clever, similarly disabled friend help him to develop.
Summary:In the sing-song voice of a Latin-American child, with the repetition and rhythm of a nursery rhyme, the poem tells of "my brother/who spins his eyes" and the child-narrator's awareness of the shame the parents feel about having a mentally retarded son. The poem superbly captures traits of mental retardation, and the sibling child's awareness of its impact on the family.
Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.
The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.
But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "
Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.
During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."
Summary:The border of this short poem refers to the boundary separating the narrator both from those who are well, and from her own self before she became ill with a painful chronic disease. She is an "exile" who must tell stories about what life was like in another country (good health) in a perhaps idealized past.
The narrator is an alcoholic who has signed himself into a "drying-out facility." He has been there before and tries to reassure his companion, J.P., that their unpleasant withdrawal symptoms will improve. J.P. likes to talk and the narrator encourages him to do so because he would rather listen to J.P.'s stories than think about his own predicament. After hearing about J.P.'s marriage--infatuation, love, children, drinking, fighting ("who knows why we do what we do?")--the narrator is able to tell his own story.
His story includes a wife with whom he was once happy but from whom he is now estranged, and a girlfriend who has received a cancer diagnosis. Each woman had brought him to the drying-out facility, at each separate occasion. "Part of me wanted help. But there was another part." The narrator's ambivalence extends to his relationship with these two women. He can't face his girlfriend's illness or her son, and he knows that if he calls his wife she will ask him "where I'm calling from" and he will have to explain.
The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].
Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.
The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).
Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.
This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.
Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.
The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.
These arresting and beautiful drawings of a woman's body through which the interior skeleton is visible represent the art and body of Laura Ferguson, a visual artist who has severe scoliosis. At age 13 Ferguson underwent spinal fusion surgery, followed by one year spent wearing a plaster cast. Years later she began to experience pain and disability due to her condition. This was the impetus to try to understand her body, to visualize its skeleton, to undertake "an artistic inquiry" into the medical condition of scoliosis.
She learned anatomy and the physiology of motion, learned to read her own x-rays and was helped to visualize her skeleton by orthopedists and radiologists, working most recently with radiologists at New York University School of Medicine who provided a 3D spiral CT scan. In Ferguson's words, the latter is "an exciting new technology that allows me to view my skeleton from any angle, rotating and tilting it to match whatever movement or pose I'm interested in drawing." (Perspectives in Biology and Medicine, Spring 2004, vol. 47, no. 2, p. 166)
Ferguson originated her own technique of "floating colors" to produce the layered background (on paper) of these drawings. On top of the complex colored background that constitutes the body's flesh in her work, she uses drawing materials to represent the interior skeleton, allowing the viewer to see both the body and its skeletal interior--but the interior has been exteriorized. Ferguson depicts a body in motion--bending, kneeling, reclining, stretching, twisting--as well as a sensual body--nude, with breasts and long hair; embracing, being embraced. Some of the depictions do not have a skeletal interior at all while some are almost straight anatomical drawings of skeleton parts.