Showing 201 - 210 of 845 annotations tagged with the keyword "Patient Experience"

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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Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Poem

Summary:

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."

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Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

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.

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Autobiography of a Face

Grealy, Lucy

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

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."

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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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Illness as Experience

Volandes, Angelo

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

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.

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dialysis

Clifton, Lucille

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The speaker was treated for cancer but afterwards "the kidneys / refused to continue. / they closed their thousand eyes." Now she is in the dialysis unit, a patient once again, with other patients. She thinks her body rebelled against the cancer surgery by refusing to lose "even the poisons" that the kidney eliminates.

She thought that when the cancer was treated she would be well, but instead, there was more illness--a chronic disease. She knows that she is expected to take the situation in stride ("we are not / supposed to hate the universe") but she is "furious"--all her gratitude for being saved from cancer has been nullified.

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The Broken Column

Kahlo, Frida

Last Updated: Jan-09-2010
Annotated by:
Aull, Felice

Primary Category: Visual Arts / Painting/Drawing

Genre: Oil on canvas

Summary:

A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal.  She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset.  The center of her upper body is vertically torn open from neck to pubic region to reveal an Ionic column that is split horizontally in numerous places.  The column pushes up against the figure's chin.  The expression on the woman's face is serious, stoic.  Tears trickle from her eyes and carpenter nails penetrate the skin of her face and the rest of her exposed body, as well as the sheet.  Her long dark hair hangs loosely behind her head, her left ear exposed. Behind the woman stretches a fractured greenish-brown earth, reaching to a strip of sea, which meets the dark blue sky.

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Endpoint and Other Poems

Updike, John

Last Updated: Jan-09-2010
Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Endpoint is an extraordinary sequence of seventeen poems John Updike wrote near the end of his life.  Beginning on his birthday in March,  2002, he wrote a poem every birthday for the next 6 years.  Then after his 2008 birthday he wrote several more poems, mostly focusing on his dying from lung cancer.  The last poem, "Fine Point," was dated 12/22/08.  He died in January, 2009.  The poems also include memories of his mother writing and cranking out manuscripts, but never getting published; of childhood friends who became models for characters in his novels; of getting lost in a department store as a three-year-old; of Jack Benny and FDR, Mickey Mouse and Barney Google, as well as five wars. The memories are both personal and international in scope.  His attitude toward them varies from distress to appreciation and gratitude.

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