Showing 171 - 180 of 676 annotations tagged with the keyword "Illness and the Family"
Poet and essayist Floyd Skloot gives us his third memoir; each of the three concerns a somewhat different facet of his attempt to recover from and live with mental and physical damage resulting from a viral illness that struck him in 1988. This book, written approximately 15 years after the initial insult, "is a memoir of the reassembled life" (ix). Life for Skloot is different than before, but a kind of order--Skloot calls it "harmony"--has been constructed out of memory loss, mental disorder and incoherence: "I have learned to savor the fragments themselves, and to live in the moment" (xi). A World of Light is perhaps more a collection of essays than a memoir.
Most of part one and some sections of parts two (Ch. 5, "1957") and three (Ch. 15, "Taking Stock") concern Skloot's interaction with his aged mother as she slides further and further into dementia. Anyone who wants an idea of what it is like to interact with a person who has Alzheimer's disease should read these sections. Skloot masterfully reproduces the often bizarre conversations that occur--the sometimes maddening repetition of comments during attempts at conversation.
Skloot's mother admires his wife, Beverly, and repeatedly instructs them to marry each other, no matter how often they assure her they are already married. She forgets their previous visits to her in the nursing home, although they visit regularly, and becomes anxious when they leave, even though she isn't certain who they are. Skloot writes about how receptive his mother is to music, which delights her, and how she sings snatches of old songs triggered by the words of any offhand comment--phenomena that have been noted in some other descriptions of Alzheimer's patients.
The essays in part two look back on Skloot's childhood, his family's background, and on his development as a writer. Part three centers on his current life with his wife, Beverly, whose home in rural Oregon provides a refuge for them both (although they are now in the market for different surroundings).
This is a vivid, partly autobiographical tale of clinical depression and the struggle for selfhood, written by an early feminist. The story is told by means of a journal which the narrator secretly keeps against the orders of her physician-husband, who believes this intellectual effort is contributing to his wife-patient's nervous condition. The narrator, a new mother, has been brought to a country house for a "rest-cure" by her husband; he selects for her the room with the yellow wallpaper, the (former) nursery, where the "windows are barred for little children" and the bed has been nailed to the floor.
Forbidden to write and think, prescribed for and infantilized, the narrator becomes increasingly dysfunctional. She obsesses about the yellow wallpaper, in which she sees frightful patterns and an imprisoned female figure trying to emerge. The narrator finally "escapes" from her controlling husband and the intolerable confines of her existence by a final descent into insanity as she peels the wallpaper off and bars her husband from the room.
Bessie, who has been caring for her invalid aunt and her father who is helpless after suffering a stroke, discovers she has leukemia. While this does not seem like a subject for comedy, this warm-hearted play really has some funny moments. Laughter is good medicine in this caregiving household. Bessie’s sister, Lee, who has been out-of-touch for years, arrives with her two sons in the hopes that one of them might be a bone-marrow match for Bessie. For Lee the idea of devoting her life to caring for helpless aging relatives would be wasting it.
One reason Lee doesn’t want to take over the caregiving for her father is that she has plenty of trouble trying to be a mother to her two sons, particularly Hank who has been committed to a mental hospital because he burned down the family home. She tells the hospital psychiatrist "Hank is something I cannot control, so what is the point of my visiting?" While Bessie will not find a cure for her leukemia, an important start on healing does occur in the play as Bessie helps both Hank and Lee to care for each other.
This great literate novel is the tale of Hans Castorp, the "delicate child of life" whom we first meet at age 23, ambivalently embarking on a career as a ship-building engineer in his home city of Hamburg, Germany. Before beginning his professional work, however, he journeys on what is intended to be a vacation and a pro forma visit to see his tubercular cousin, Joachim Ziemssen, at a sanatorium in the mountain town of Davos, Switzerland. Yet as the train pursues its course through the alpine scenery, Hans and the reader become aware that this is no ordinary journey. The impressionable Hans is transported away from the life and obligations he has known, to the rarefied mountain environment and insular community of the sanatorium.
At first uneasy, he soon becomes fascinated with and drawn to the routine established for the "consumptives" and to the social scene which flourishes there. Ordinary life seems increasingly unreal to him; his perceptions are heightened and he becomes aware of his physical, spiritual, and emotional vulnerability, as well as of his own sexuality. He is greatly attracted to one of the patients, a married woman of Slavic background, Madame Clavdia Chauchat. She reminds him of a schoolboy to whom he had been strangely drawn as a child. The turmoil brought on by this romantic obsession seems even to be reflected in his physical state, which is unstable and feverish.
As his intended stay of three weeks nears its close, the director of the sanatorium advises Hans to stay on to recuperate from a heavy cold, which appears to reveal an underlying case of tuberculosis. Hans is almost relieved at this news, for it provides him with a reason for remaining near Madame Chauchat as well as the opportunity to continue intriguing, profound discussions and cogitation about illness, life, time, death, religion and world view initiated by another patient, Herr Settembrini.
Settembrini is an Italian man of letters and humanist who believes that reason and the intellect must and will prevail, in daily life as well as in world affairs. He is contemptuous of the foolish flirtations and empty talk in which most of the sanatorium inhabitants indulge, and warns Hans repeatedly of the dangers inherent in cutting off all ties to real life and responsibility.
Nevertheless, Hans remains at the sanatorium for seven years, freeing himself from the constraints and conventions of life "in the flatlands" and instead engaging in a prolonged "questioning of the universe." This questioning includes a critical flirtation with death, stunningly described in the chapter, "Snow." Hans does not return home until the outbreak of World War I, in which he fights and survives.
The author, who writes and teaches nonfiction writing, began research on the lawsuit that forms the fascinating subject of this book in February, 1986. While the book focuses on Jan Schlichtman, the lawyer for the plaintiffs, and on his strategy in the case, there is much here that is relevant for health care professionals.
The lawsuit, which lasted nine years, concerned the tragic consequences of exposure to toxic waste: deaths from childhood leukemia; skin rashes, nausea, burning eyes, and other ailments. It was brought by eight families who lived in Woburn, Massachusetts against two companies, W. R. Grace and Beatrice Foods. The lawsuit claimed that these companies were liable for illnesses and deaths attributable to trichloroethylene (TCE) contamination of the water supply.
The story of how the families and the lawyers pieced together the fragments of the puzzle to determine cause and effect is gripping. One gains an appreciation for environmental epidemiology and the difficulty of reaching conclusions when only a small number of individuals are affected. Medical experts, public health specialists, geologists, civil engineers, government agencies, and the intelligence and driving motivation of the affected families and their lawyers were all necessary to establish the credibility of the claim.
In the end, however, the financial power and stonewalling of the companies, and the partiality of the presiding judge for one of the defense lawyers resulted in a verdict that favored the defense. Jan Schlichtman, the plaintiff's lawyer, was forced to declare bankruptcy.
Only when the Environmental Protection Agency (EPA) decided to launch a clean-up and filed suit against W. R. Grace and Beatrice Foods to pay a share of the cost, was any semblance of justice obtained. The EPA project will take 50 years, and even so, "all parties agree that it will prove impossible to rid the site of TCE and perc [tetrachloroethylene] completely . . . . " (Afterword; p. 494) Nevertheless, most of the families have not moved.
Joe Egg is the nickname Bri and Sheila have given their severely brain damaged child, who is 10 years old at the time of the play. Since she cannot function as a normal human child, they make up conversations for her and invent personalities, though Joe never actually says anything, or even shows any ability to crawl or reach for something.
Her parents make up all kinds of little scenes which they act as if they recounted the history of how Joe got to be so damaged and how many useless therapies and "magics" they had tried to cure her. At one point Bri tries to "let" his daughter die, by not giving her medicine and by exposing her to winter cold, but he doesn't succeed. By the end of the play, he has left Sheila and Joe to themselves.
In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."
Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).
Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).
The poet's daughter suffered from Guillain-Barré Syndrome and was in a rehab institute. The mother, who narrates the poem, observes several of the other children there, all of whom seem either abandoned by their parents or orphaned. Each stanza describes a different child with a different disability (and no family there for him or her).
The only mother who appears stays far away from her child. "When he goes home, Frankenstein with cane, his mother / clicks her high heels quickly away, as far ahead / of him as she can get."
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.
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.