Showing 181 - 190 of 287 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
This thought-provoking book is a collection of readings which the editors have found to be particularly useful for a course they teach, "What’s Normal?" It is their intent to facilitate consideration of how the world is experienced by those who are socially marginalized because of their physical appearance. The title of the anthology derives from an article written by the literary critic, Leslie Fiedler, and reproduced as the lead-off essay. Fiedler argues that the propensity of cultures throughout history to define the normal and to make political decisions about physical "abnormality" has reached a point where the rich will perpetuate the cult of normalcy (by paying for medical treatments that ensure it) while "the poor . . . will be our sole remaining Freaks."
The anthology is divided into several sections: Part I contains nonfiction articles, essays, and excerpts from books. Part II reproduces fiction, poetry, and drama and is further subdivided into "Abnormal Weight and Eating Disorders"; "Abnormal Height-Dwarfism"; and "Deformity and Disability." Many of the pieces have been annotated individually for this database (e.g. Fat by Raymond Carver, annotated by Carol Donley and also by Felice Aull and Irene Chen; Skanks by Rennie Sparks; The Fat Girl by Andre Dubus; Weight Bearing by Patricia Goedicke; Dwarf House by Ann Beattie; The Song the Dwarf Sings by Rainer Maria Rilke; The Dwarf by Ray Bradbury; The President by Donald Barthelme; The Birthmark by Nathaniel Hawthorne; The Elephant Man by Bernard Pomerance and others).
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.
This is a collection of stories from Dr. Remen’s own life and from her practice as a pediatrician and psychiatrist. She works with many cancer patients and others who are terminally ill as well as with the chronically ill. Her stories record patients and their families finding what is authentic and meaningful in their lives when they have been forced deeply into their own vulnerability. She also speaks from her lifelong struggle with Crohn’s disease.
Editor Helman is a physician and anthropologist as well as a published author of short stories, essays, and a medical anthropology textbook. For this anthology he has selected short stories, case studies, memoir and novel excerpts whose purpose is "to illustrate different aspects of [the] singular but universal relationship" between doctors and patients (1). In the introduction he discusses how these selections illustrate storytelling in medicine; the unique experience of individual illness; differences between fast-paced contemporary technological specialized medicine, and an older more leisurely medicine where the physician employed all his/her senses to diagnose illness, doctors made house calls, and patients recovered over time, or died.
The anthology is subdivided into three parts: "Doctors," represented by the work of Mikhail Bulgakov, Franz Kafka, Sir Arthur Conan Doyle, and Rachel Naomi Remen; "Patients," represented by authors Renate Rubenstein, Ruth Picardie, Rachel Clark, Clive Sinclair, W. (William) Somerset Maugham, and O. Henry; and "Clinical Encounters," with work by Oliver Sacks, Cecil Helman, William Carlos Williams, A. J. (Archibald Joseph) Cronin, Anton P.Chekhov, and Moacyr Scliar. (In total there are 16 selections.) Each piece is preceded by a paragraph of biographical information about its author and an introduction to the text.
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).
In short, episodic chapters that move unpredictably and unchronologically through the years between 1956 and 2003, Nick Flynn tells us about his father, Jonathan Flynn--a man of many trades, a writer, an alcoholic with a prison record, a homeless person--and of his own life, which sporadically interweaves with Jonathan's. When Nick was six months old, his 20-year-old mother left Nick's father and made a meager life for herself and her two young sons. A string of her live-in boyfriends and one more failed marriage wound their way through Nick's young life, which was in the seaside town of Scituate, Massachusetts, "the second most alcohol-consuming town . . . in the United States" (77).
At 12, Nick is drinking beer; at 17 he is drinking to get drunk, sometimes with his mother, and smoking marijuana (and later doing other drugs). For years Nick's father "had been manifest as an absence, a nonpresence, a name without a body" yet, "some part of me knew he would show up, that if I stood in one place long enough he would find me, like you're taught to do when you're lost. But they never taught us what to do if both of you are lost, and you both end up in the same place, waiting" (24).
The place where Nick and his father "end up" is the Pine Street homeless shelter in Boston where 27-year-old Nick is a caseworker and Jonathan Flynn appears, a few months after being evicted from his rooming house. Reluctantly, Nick gradually acknowledges his father's presence in the shelter, and gradually, during the next 15 years, reconstructs the lost years through conversations with his father and his father's acquaintances, letters, and manuscript excerpts. The title of the memoir is what Jonathan Flynn mutters at night, when he is looking for a place to sleep (205).
Angels in America is really two full-length plays. Part I: Millennium Approaches won the 1993 Pulitzer Prize for Drama. This play explores "the state of the nation"--the sexual, racial, religious, political and social issues confronting the country during the Reagan years, as the AIDS epidemic spreads.
Two of the main characters have AIDS. One, Prior, is a sane, likeable man who wonders if he is crazy as he is visited by ghosts of his ancestors, and selected by angels to be a prophet (but the audience sees the ghosts and angels too). The other main character, Roy Cohn, based on the real political figure, is a hateful powerbroker who refuses the diagnosis of AIDS because only powerless people get that sickness.
A rabbi opens the play, saying that in the American "melting pot" nothing melts; three Mormons try to reconcile their faith with the facts of their lives. Belize, an African-American gay nurse, is the most compassionate and decent person in the play, along with Hannah, the Mormon mother who comes to New York to try to untangle the mess of her son and daughter-in-law’s marriage. In contrast to their commitment, Prior’s lover, Louis, abandons him in cowardly fear of illness. The play portrays a wide range of reactions to illness, both by the patients and by those around them. Included is the realization that much of the nation’s reaction is political and prejudiced.
The second play, Part II: Perestroika (winner of a Tony Award), continues the story, with the angel explaining to Prior that God has abandoned his creation, and that Prior has been chosen to somehow stop progress and return the world to the "good old days." Prior tells the angel he is not a prophet; he’s a lonely, sick man. "I’m tired to death of being tortured by some mixed-up, irresponsible angel. . . Leave me alone."
Ironically, Belize is Roy Cohn’s nurse, as Cohn--even as he is dying in his hospital bed--tries to manipulate the system to get medication and special treatment, and to trick the ghost of Ethel Rosenberg into singing him a lullaby. Meanwhile, the Mormon mother, Hannah, manages to help save the sanity and integrity of her daughter-in-law, Harper; and she also is a good caregiver for Prior.
At the end of the play, we see Prior, Louis, Belize, and Hannah sitting on the rim of the fountain in Central Park with the statue of the Bethesda angel. They say that when the Millennium came, everyone who was "suffering, in the body or the spirit, [and] walked through the waters of the fountain of Bethesda, would be healed, washed clean of pain."
These four characters represent Jews and Christians and agnostics; homosexuals and heterosexuals; blacks and whites; men and women; caregivers and patients; two generations--the American mix, in this case, caring about each other. Somehow, although the real angels in this play seem inept and reactionary, these folks together at the Bethesda angel fountain seem competent contributors to the future.
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.