Showing 171 - 180 of 843 annotations tagged with the keyword "Patient Experience"

Because of Anya

Haddix, Margaret Peterson

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Keely, whose three "best friends" are a dominant clique in their class, notices that a classmate, Anya, appears to be wearing a wig. The girls confer about it at lunchtime, wonder whether to ask about it, and theorize that she may have cancer and be undergoing chemotherapy. Stef, long the most aggressive among the four friends, suggests that Keely talk with Anya and find a way to determine whether it is a wig, but Keely refuses, recognizing in Anya, whom she rarely notices, a quality of loneliness she hadn’t seen before.

Their curiosity is satisfied when Anya’s wig comes off during a gym exercise and she runs out and remains absent for several days. Keely decides to visit Anya and learns that she has a rare disease, alopecia areata, which is painless and otherwise harmless, but causes hair to fall out, sometimes all over the body. When she asks if she can help, Anya replies, "Not unless you want to give me your hair."

Keely researches the disease for class and finds that there is a foundation that collects long hair for wigs for patients suffering from Anya’s condition, so she cuts off her own long hair and encourages classmates to do the same in a gesture of solidarity with Anya, in the process defining a new independence from the clique of friends who have too long shaped and confined her judgments of others.

View full annotation

Losing and Finding

Fiser, Karen

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.

One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."

View full annotation

Mr. Right and My Left Kidney

Saltzman, Joan

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir by Joan Saltzman recounts her marriage, in her forties, to a man whose kidney disease was progressing to a point of choice between dialysis or transplant.  The first half of the book is a lively account of their somewhat stormy courtship, layered with memories of her childhood and reflections on tensions with and loss of her parents.  The second half focuses largely on the difficult decision to donate one of her own kidneys to her husband.  Even undergoing tests to determine she was a match required some wrestling with fear and resistance.  The chronicle continues through bumpy recoveries to a new level of intimacy and understanding of ongoing shared life in new terms.  Her idea of "complete recovery" had to be modified once she recognized that even a successful transplant doesn't restore a former state of health, but does restore a new range of possibilities.

View full annotation

The Resurrectionist

McCann, Richard

Last Updated: Feb-12-2010
Annotated by:
Garden, Rebecca

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

McCann’s essay is an account of his experience of liver transplantation. It describes his physical and psychic experience of liver failure while waiting on the list for an available organ, his experience in the hospital when the procedure was done, and the aftermath, in which he makes conceptual and emotional adjustments.

View full annotation

Madness

Hornbacher, Marya

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir of a lifelong struggle with bipolar disorder, complicated by eating disorders and alcoholism, records the internal experiences of mania, confusion, depression, delusion, anxiety, terror, wild impatience, discouragement, and at times clarity and resolve that alternate in her life of recurrent struggle.  Diagnosed somewhat belatedly as rapid cycling type 1 bipolar disorder, her disease drove her to one disastrous coping strategy after another until she was hospitalized for her eating disorder and for cutting herself.  After years of intermittent hospitalizations and encounters with several incompetent psychiatrists as well as a few who were consistently helpful, she has come to understand exactly the kind of help she needs-at times trusting others' assessments of her condition more than her own, accepting supervision, abstaining from all alcohol-a critical factor in avoiding psychosis.

Her doctors continue to recalibrate her complicated drug therapies, and her moods and control remain precarious, but she has learned to live with a disease that seems still to be poorly understood, accept the limits it imposes, and handle it with intelligence, humility, and even at times a wry note of humor.  She has learned to accept help from the husband whose love survives recurrent unintentional abuse, and from parents and friends who remain supportive.  She ends the memoir on this note of acceptance, appending to it a list of facts and statistics about bipolar disorder designed to help situate it for the reader relative to other diseases and disorders.

View full annotation

The Woman Who Can't Forget

Price, Jill

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir, written with the help of Bart Davis, was published two years after the publication of a study that documented Price's "hyperthymestic syndrome"--the exceptional comprehensive memory of the details of daily life that dates back to her early adolescence.  Price tells of the relief and fascination she felt in working with researchers at U.C. Irvine to arrive at a diagnosis of her rare, and in some ways unprecedented, condition.  The narrative includes both her own account of the testing she underwent for purposes of diagnosis and brain mapping, and her story of growing up with an exceptional, and in some ways burdensome capacity to remember with detailed accuracy everything that happened, by date, including vivid replication of the emotions and sense experiences of the remembered moment.  Her story includes a particularly thoughtful chapter on losing her husband suddenly and the role of memory in mourning.

View full annotation

We Mad Climb Shaky Ladders

Wagner, Pamela

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Each poem in this collection is preceded by brief comments both by the author/patient and by her psychiatrist.  Together the poems chronicle incidents in the interior life of a woman who has lived with schizophrenia for 35 years, been hospitalized, changed doctors and medication, undergone intense feelings of isolation, and also has experienced remarkable support and love from a twin sister and a few loyal friends.  The poems range in tone from matter-of-fact tellings of psychotic episodes to reflections on relationships, both personal and professional, that have been important in the course of treatment.  The book is organized as a chronology that traces the trajectory of diagnosis, illness, treatment and recovery; the final section is entitled "Beginning Again."  Read in sequence, they give a rich sense of the writer's life, struggles, resilience, and unusual self-awareness.  

View full annotation

The Condition

Haigh, Jennifer

Last Updated: Feb-12-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

When Gwen is twelve, her parents, suspecting her failure to show signs of normal adolescent development may be more serious than they had thought, have her tested and learn that she has Turner syndrome, a chromosomal disorder that frequently manifests in short stature, broad chest, low-set ears, amenorrhea and sterility. The diagnosis brings a new source of discord into an already somewhat dysfunctional New England family.  Gwen's mother, Paulette, prefers not to talk openly about Gwen's condition, or even, for a time, to admit it is real.  Her father, a scientist at MIT, is deeply interested in finding out more about it, but the clinical nature of his interest offends his wife.

Eventually the parents divorce, each to cope with different kinds of loneliness and alienation from Gwen and her two brothers.  One of those brothers, the designated achiever, is gay, but remains closeted for some years, in keeping with his mother's family culture.  The other, after a somewhat rebellious youth, marries a girl from blue-collar California, takes a teaching job, and eventually finds himself identifying with his son who receives a diagnosis of ADD not available during Scott's own youth.  The novel follows the individual stories of the five family members, each of whom carries his or her own burden of suffering, and brings them together during an unusual holiday gathering at the end, not for magical closure, but for a remarkable moment of retrospective understanding and opportunity for each to do some self-assessment and self-disclosure.

At the heart of the story is Gwen's "condition," recognized by all of them as the sadness that lies at the core of their family's chronic discomforts with one another.  Gwen herself finds her way into an authentic love relationship in her mid-thirties with a Caribbean diving guide she meets on a chartered excursion.  Though her mother is horrified and suspicious, and the rest of her family bemused, the experience of authentic love and friendship liberates Gwen from a history of self-defeating presumptions about her own limitations.

View full annotation

Summary:

This study examines representations of feminine illness in American culture from 1840 to 1940. It argues that the figure of the invalid woman emerged in the 1840s amid significant changes in "American literature, medicine and culture," including the emergence of a specifically American literature, the professionalization and masculinization of medicine, and the "sometimes complementary, sometimes opposed" ideologies of feminism and domesticity (17).

The book discusses mid-nineteenth-century medical theories that articulated women as "biologically inferior . . . given to disease and pain" (34) before analyzing contemporary literary works by E.D.E.N. Southworth, Harriet Beecher Stowe, Nathaniel Hawthorne (see this database for annotations of The Birthmark and Rappaccini’s Daughter) Washington Irving, Edgar Allan Poe, and works by twentieth-century authors including Ellen Glasgow, Charlotte Perkins Gilman (see this database for The Yellow Wallpaper annotated by Felice Aull and also annotated by Jack Coulehan), Tillie Olsen, Edith Wharton, F. (Francis) Scott Fitzgerald (see this database for Tender Is the Night annotated by Jack Coulehan, also annotated by Pamela Moore), and Henry James. Art, advertisements, and the film, Dark Victory (see annotation) are other points of reference.

Price Herndl examines compliant and resistant uses of women as invalids; the surprisingly small changes in figures of feminine illness in response to changes in women’s rights; the links literature constructs between illness, money, work, and value; shifting theories of cure (from somatic to psychic); and the rise of germ theory in relation to fictional representations of illness. She argues that male and female fiction writers in the period she studies use feminine illness for different purposes: "What that figure signifies is kaleidoscopic, shifting to suit the political needs of its user" (218).

Invalid figures in literature and culture, Price Herndl asserts, can "divert political dis-ease into an overwhelming attention to the individual body and away from the body politic," locating people’s problems in their individual bodies and selves rather than in the oppressive aspects of their culture (220). Recurrent representations of sick women reflected the extreme unease attached to the position of women in American culture in the years 1840-1940. While her study stops at 1940, Price Herndl asserts that after World War Two and at other points when "masculine privilege seems threatened . . . illness is figured more and more often as male" (220).

View full annotation

Annotated by:
Holmes, Martha Stoddard

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

Most of the twenty works in this anthology are first-person narrative essays. They represent a wide range of women’s experiences of embodiment, spanning both the average lifespan and the particularity of individual lives, focusing on puberty and menstruation, weight-consciousness and eating disorders, facial disfigurement, multiple sclerosis, infertility and pregnancy, cosmetic treatments and surgery, breast cancer, and aging. A few essays offer a valuable cross-cultural lens on the experience of embodiment.

Hanan al-Shaykh’s Inside a Moroccan Bath (see this database) explores her dual experiences of being stigmatized in Middle Eastern culture for her thinness, and then having her stigma recast as value when she moved to a European city. Judith Ortiz Cofer’s "The Story of My Body," which begins "I was born a white girl in Puerto Rico, but became a brown girl when I came to live in the United States," (299) offers another perspective on the cultural instability of the criteria for female beauty. Linda Hogan’s "Department of the Interior" positions her experience of embodiment within the intertwined contexts of American Indian culture and the physical landscape of the West.

Some of the contributors are well-known for their texts on embodiment ( Lucy Grealy, Nancy Mairs, and Naomi Wolf, for example), whereas others are well-known creative writers (Margaret Atwood and Linda Hogan). Pam Houston’s Out of Habit, I Start Apologizing is also annotated in this database.

View full annotation