Showing 171 - 180 of 281 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Annotated by:
Aull, Felice

Primary Category: Literature / Fiction — Secondary Category: Literature / Fiction

Genre: Short Story

Summary:

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.

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Marvin's Room

McPherson, Scott

Last Updated: Jan-14-2010
Annotated by:
Donley, Carol

Primary Category: Literature / Plays

Genre: Play

Summary:

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.

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Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

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.

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Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The poet considers pain as a place she inhabits, from which she could (hope to) escape, " . . . returned magically to life . . . ." But it is inescapable, "like your softest skin . . . a room no one else can come into . . . . " Finally, it is "only feeling" that defines this place, a place of silence, suffering, and separateness.

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

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).

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A Civil Action

Harr, Jonathan

Last Updated: Jan-14-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

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.

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Joe Egg

Nichols, Peter

Last Updated: Jan-14-2010
Annotated by:
Donley, Carol

Primary Category: Literature / Plays

Genre: Play

Summary:

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.

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Summary:

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.

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

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.

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On Being a Cripple

Mairs, Nancy

Last Updated: Jan-14-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

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).

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