Showing 191 - 200 of 828 annotations tagged with the keyword "Caregivers"

The Body Silent

Murphy, Robert

Last Updated: Jan-20-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.

Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.

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As I Live and Breathe

Weisman, Jamie

Last Updated: Jan-20-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Before Jamie Weisman went to medical school and became a physician she wanted to be a writer. As she struggled to make a career out of writing, she was forced to acknowledge that the obscure, life-threatening condition that had plagued her since adolescence could not be factored out of her plans. Writers don't have easy access to affordable health insurance and her monthly intravenous infusions of antibodies and interferon were very expensive. Yet they were essential to fend off infection, for she had an immune system malfunction.

Of course, finances were not the only reason that Weisman decided to go into medicine. As is often the case, her own experience of illness was an important motivating factor, as was the fact that her father, of whom she is very fond, was a physician. This memoir describes significant stages of Weisman's illness, her interaction with the physicians she consulted, and the issues she grapples with as she pursues her life as a physician, wife, and mother (she graduated from Emory University's school of medicine in 1998 and practices dermatology).

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Summary:

Spoiler alert: for educational purposes, this annotation reveals plot lines and may interfere with some viewers' enjoyment of the film. In the opening scene, Juliette (Kristin Scott Thomas), looking ashen, drawn, and nervous, sits in an airport as her much younger and radiant sister Léa (Elsa Zylberstein) rushes to meet her.  Léa brings an eager, if somewhat forced cheer to their halting conversations during this meeting and in their car ride to the home Léa shares with her husband, their two small adopted Vietnamese daughters, and her mute father-in-law.  From this awkward beginning, the sisters try to cross the chasm of a fifteen-year separation.  The cause and nature of the separation gradually unfold in small, slowly paced scenes of ordinary life at home, at work, in a café, during dinners with friends.  These scenes form the visible surface under which secrets and plangent, unacknowledged emotions lie, sometimes erupting into view, sometimes gently suggested.
    
The cause of the separation is the prison term Juliette has served in England.  We eventually learn that the sentence has to do with the death of her child, with her being a physician, with her child's suffering from cancer, and with the application of her medical knowledge to end his pain.  Following the court sentence, Juliette's parents refuse to acknowledge her, her husband divorces her, her sister buries memories of their childhood and chooses not to give birth, family and friends never visit her in prison.  We also learn that Juliette remained inexplicably silent throughout her trial.  She continues to say very little as she settles in with Lea's family and circle of friends, who are baffled by her sudden appearance in Lea's life.  But as Juliette's participation in her sister's circle increases in fitful starts, she becomes cautiously more communicative and brighter.

During a confrontation with Léa at the end of the film, Juliette reveals that, more than avoiding a shameful appraisal from others, she remains silent because there are no words to express her pain.  Being in prison made literal the isolating psychological state she inhabited.  "The worst prison is the death of one's child," she says.  "You never get out of it."  With these words, the film places the wound and the pain at the core of its main character in the inescapable vulnerability of motherhood.    

    

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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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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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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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Angels in America

Kushner, Tony

Last Updated: Jan-12-2010
Annotated by:
Donley, Carol

Primary Category: Literature / Plays

Genre: Play

Summary:

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.

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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.

Finally, in "the mother of all experiments," the four promising drug developments were tested against each other in a double-blind trial. After five years of development, the "special medicine" was finally given to the Crowley children. Daughter Megan, a real fighter and outgoing personality, won over the hearts of the researchers. Interesting conflict of interest issues increase the tension in this race for a cure.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

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.

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