Showing 121 - 130 of 264 annotations tagged with the keyword "Illness Narrative/Pathography"

The Book of Job

Author 2, Unknown

Last Updated: Nov-25-2008
Annotated by:
Holmes, Martha Stoddard

Primary Category: Literature / Poetry

Genre: Poems (Sequence)

Summary:

Job, a prosperous but god-fearing man, is stricken with a series of misfortunes, losing his goods, his sons, and his health all as a result of a wager between God and Satan about whether or not a "perfect and upright" man will remain thus under relentless misfortune (1:1). As he sits in ashes, covered with boils, a group of friends come to mourn with and comfort him, sitting beside him for seven days and nights in complete silence "for they saw that his grief was great" (3:13).

Job proves a good bet by never following his wife's advice to "curse God and die," but he does deliver a series of lamentations and questions about his condition, countering his friends' theories about the possible causes (unacknowledged sin, primarily) for his troubles and finally asserting his desire to speak directly to God and ask Him the reason that a good man has been burdened with a host of sorrows (2:9). Job's friends, including a fourth speaker, Elihu, who was probably added into the text by a later writer, reprove him angrily.

God appears suddenly and speaks to Job from within a whirlwind, ending Job's complaints with his chastening response. Rather than offering a rationale for Job's suffering, God reminds him of the limitations of a human perspective. Ultimately God rewards Job and reprimands Job's friends.

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Dr. Lois Ramondetta was a fellow in gynecologic oncology at M. D. Anderson Hospital in 1998 when she met Deborah Rose Sills, a professor of comparative religion, who had undergone surgery for ovarian cancer the year before and was re-admitted for small bowel obstruction. Ramondetta and Sills "clicked," and their relationship developed over several years from doctor-and-patient to close friendship and eventually co-authorship of this memoir. The women tell separate stories (Sills's are in italics), which interact more and more as the relationship progresses. Ramondetta writes about marriage to a medical classmate, its rapid unraveling under the stresses of residency, her infant daughter, and the complexities of her life as a single mother. Sills' sections tell of a highly regarded professor accepting a life with cancer, but struggling against reinterpreting herself as sick. Some of their interactions take place at MD Anderson Hospital, as Sills returns for a bone marrow transplant and later for management of recurrences and complications.

Their friendship also blossoms at their respective homes in Houston and Santa Barbara. Among the stories they share is that of Ramondetta's courtship and marriage to a local disk jockey, and the rock-solid support of Sills's family.  In addition, they begin to collaborate, first on a lecture and then on an academic paper about spirituality and ovarian cancer. This dialogue eventually leads to the book itself, completed only after Sills's death in 2006.

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Summary:

Julian Schnabel’s film version of Jean-Dominque Bauby’s memoir, The Diving Bell and the Butterfly (see annotation), is a re-imagining of the book that offers new approaches to teaching, even while it misses some of the aspects of the book that are so critical to educating medical and nursing students about the experiences of patients. Like Bauby’s book, Schnabel’s movie tells the story of a high-level editor at French Elle who has a stroke and is paralyzed except for the ability to blink one eye and to move his head slightly. Bauby (Mathieu Amalric) awakens from a coma to find himself in a hospital and unable to move or, at least at first, to communicate.

A speech therapist (Marie- Josée Croze) teaches him how to blink in response to letters as she reads through the alphabet, so that letter by letter Bauby can communicate. Friends and family learn this method, and eventually Bauby decides to write a memoir of his experiences using this technique. His publisher finds an amanuensis to transcribe the portions of the book that he first memorizes and then communicates to her painstakingly. The film portrays the process of writing the book, Bauby’s experiences in the hospital with health care professionals, family, and friends, and also some past experiences, such as caring for his aging father and taking a trip with a girlfriend to Lourdes.

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A Place Called Canterbury by social historian Dudley Clendinen, former New York Times national correspondent and editorial writer, provides readers with an intimate and revealing account of aging in a particular place at a particular time--Canterbury Tower in Tampa, Florida. The story about the author's mother, Bobbie--and so many others--begins in 1994, a few years after the death of James Clendinen, Bobbie's husband of 48 years, and known to the community as the progressive editor of the Tampa Tribune. Although she had been "falling apart, a piece here, a piece there...collapsing vertebrae...bent, frail, and crooked...subject to spells and little strokes...." (p. xii),

Bobbie Clendinen was in reasonably good health. Nevertheless, her grown son and daughter did what most children their age do--they worried. When she finally agreed to move from the home where she had lived for twenty-nine years to Canterbury Towers, room 502, two bedrooms, two baths ($88,000 in cash, $1505 each month), Clendinen and his sister were relieved. She would be cared for and safe in "the small, cream colored, obsessively well-run geriatric apartment tower and nursing wing...across a broad boulevard from an arm of Tampa Bay" (see book cover).  And, so many of her old friends were already established residents!

Clendinen was fascinated by his mother's new circumstance and by what he came to regard as the new old age. As a writer, he could not resist the opportunity before him. Although he lived in Baltimore, he could come and go, but over the twelve-year period of his mother's residence--three in the Towers and nine years in the hospital wing--he spent more than 400 days as a live-in visitor, observer, listener, interpreter. This unusual arrangement provided Clendinen with a close-up view of a 21st Century phenomenon, the comings and goings of aging people in the final setting of their lives.

Canterbury is a well-run camp and life there is a soap opera. Between his exchanges with the witty rabbi and the former jitterbug champs, the enthusiasm generated by a nudity calendar proposal (declined) and the geriatric bib enterprise (thriving), the inhabitants provided Clendinen with an abundance of riches. Whether at lunch in the dining room overlooking the Bay, over daily drinks at 5pm, or in bed in the health center, everyone of this Greatest Generation had a story to tell. This ethnographic page-turner, with its cohort of named characters--the Southern Belle, the Rabbi who escaped the Holocaust, Emyfish, the ageless New Yorker, Lucile, the warm-hearted Fundamentalist, the raunchy Atheist, the crusty Yankee, the horny widower, and the maddeningly muddled Wilber--reads like fiction. Whether rich or poor, married or widowed, Clendinen listened as they spoke and in doing so became a trusted friend and chronicler of small and great events in their collective lives: childhood, Depression, World War II, medical advancements, healthcare costs, 9/11. Because Bobbie Clendinen spent so many years in the hospital wing, much of the story describes the kind of care and staff standards that we would hope for all--including ourselves. Mrs. Clendinen died at age 91.

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Summary:

This is a collection of approximately 45 pathographies-essays, memoirs, biography, autobiography, poems, and reflections on illness experiences -grouped loosely into four categories of related subject matter. These categories are: Illness and Identity: Dynamics of Self and Family; Concealing Illness, Performing Health; Agency and Advocacy; Medicine at the Margins. The majority of the pieces are written by non-health care academics about their experiences with a wide variety of illnesses. A few have been written by or with health care professionals.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Poems (Sequence)

Summary:

This book consists of a series of "found poems" abstracted from transcripts of interviews that Loreen Herwaldt conducted with 24 writers who had previously published accounts of their illnesses. Dr. Herwaldt, an infectious disease specialist at the University of Iowa, began her investigation into the personal experience of illness after having read Mary Swander's Out of this World: A Journey of Healing and Reynolds Price's A Whole New Life, both of which revealed a negative dimension of medical care. These books initiated an "unexpected turn" (p. 1) in Dr. Herwaldt's life, culminating in a sabbatical year during which she interviewed a wide array of writers, intending to investigate the texture and dynamics of their experience of medical care by textual analysis of interview transcripts.

However, as a result of a further (and fortunate) insight, the author decided to abstract and arrange these texts into "found poems" that have "a concentrated emotional power that the unedited stories did not." (p. 5) Among the authors whose stories of illness appear in these poems are Arthur Frank (see The Wounded Storyteller ), Nancy Mairs (A Troubled Guest: Life and Death Stories), Richard Selzer (Raising the Dead), Oliver Sacks (A Leg to Stand On), Mary Swandler (The Desert Pilgrim: En Route to Mysticism and Miracles), and Christina Middlebrook (Seeing the Crab: A Memoir of Dying). In most cases Dr. Herwaldt has crafted two or more poems giving voice to different aspects of the subject's experience. For example, Richard McCann (pp. 82-90) speaks about loving his primary care physician, why patients can't talk to doctors, what he needs from a doctor, and being labeled as a patient with hepatitis C (cf. "The Resurrectionist").

The author includes a section on "How to Use This Book" (pp.9-20) that summarizes her experience utilizing these poems in medical education settings and provides helpful hints for teaching them.

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Cancer Vixen

Marchetto, Marisa

Last Updated: Apr-03-2008
Annotated by:
Holmes, Martha Stoddard

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Cancer Vixen is the graphic narrative of Marisa Acocella Marchetto’s eleven-month cancer experience in 2004. Marchetto, a successful forty-something cartoonist for Glamour magazine and the New Yorker, serialized Cancer Vixen in Glamour while undergoing treatment. As well as the narrative of Marchetto’s diagnosis, treatment, and remission, Cancer Vixen recounts the story of Marchetto’s romance and engagement to restaurateur Silvano Marchetto, a narrative embedded in the graphic novel despite preceding it in actual chronology. The narrative explores fears about the cancer's effect on the relationship and about the loss of the chance to be a biological mother, as well as developing the relationship between the engaged couple and between Marisa and her mother (or "(s)mother," as she calls her).

The culture of cancer is another focus, including the social dynamics of having hair during cancer treatment and thus leaving oneself open to critique for not undertaking a strong enough chemotherapy. While this New York story, full of cuisine, couture (including images of the specific shoes Marchetto wore to each chemo), and cappuccino may recall the episodes of the television show Sex in the City featuring cancer, the brightly colored frames of this “Cancer in the City” tale also engage political issues like environmental causes of cancer and the reduced survival rates of women with cancer and no insurance.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author's mission is to investigate, understand, explain, describe, and puzzle over the nature of phobias -- his own, and that of other sufferers. Allen Shawn is a composer, pianist, and teacher, and is a member of a gifted family: his brother, Wallace Shawn, is a playwright and actor; his father was William Shawn, for many years editor of the New Yorker Magazine. As a musician and academic, Allen Shawn is "successful." And yet, his life is severely limited by agoraphobia, "a restriction of activities brought about by a fear of having panic symptoms in situations in which one is far from help or escape is perceived to be difficult" (13). The author interweaves sections that summarize his extensive readings on the fight-flight reaction, evolution, brain and mind, Freud's theories on phobia--with his personal history, especially as he believes it relates to his phobia.

Shawn's descriptions of how he experiences agoraphobia are vivid and informative, detailing the situations that trigger his physiologic symptoms of panic and disconnectedness: driving on unfamiliar roads, any kind of travel that is unfamiliar, walking across or on the edge of open spaces, traveling across long bridges, being in enclosed spaces (claustrophobia). The agoraphobe, he writes, "feels at risk, as if at risk of sudden death or madness" (14). Shawn tells about what he must do in order to strike out on unfamiliar trips, that is, when he gathers up the courage to take them. He must venture up to the point where panic sets in, turn back, then on another occasion repeat the process but attempt to go further, pushing through the panic, until, one day, he can make the entire journey without turning back. Sometimes he never makes it to the desired goal.

The author points to several different factors that seem to predispose people to phobias: heredity, unconscious imitation of a phobic parent, upbringing. In his own case, in retrospect, his father showed symptoms of agoraphobia. Shawn discusses the underlying repression that was pervasive in his household -- his father carried on a long-term relationship with a woman while remaining married. Shawn's mother knew about the relationship from early on but any discussion of it was forbidden, even after it became common knowledge.

Perhaps more important in Allen Shawn's perception of repression is what happened to his twin sister, Mary, who was born with what is now considered to be autism, and mental retardation. Allen felt close to this girl, even though her behavior was unpredictable and baffling. When he was about eight years old, his parents sent her away to a special boarding school without warning Allen, or offering explanations. From then on he rarely saw her; 10 years later she was institutionalized. The family did not speak much about her and her "'exile' . . . added yet another layer of mystification to an already really mystifying atmosphere. It turned out that even in our temperate environment something extremely violent could occur" (177). Not long after that, Allen began to experience severe anxiety in certain situations.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This is another wonderful book from Dr. Sacks. The subtitle, “Tales of Music and the Brain,” is accurate: we have a charming and informative mixture of stories of patients and the neurophysiology that interprets how music is processed and performed. The book is synthetic in combining cases from his practice, other clinical reports, letters from correspondents, references to medical literature, and even Sacks’s own personal experiences with music.

Sacks finds that humans have a “propensity to music,” something “innate” in human nature, perhaps like E. O. Wilson’s biophilia. “Our auditory systems, our nervous systems,” he writes, “are indeed exquisitely tuned for music” (xi). Although humans have been involved with music for millennia, it is only in the last few decades that medical imaging (functional MRI, PET) has shown what areas of the brain are active when music is heard.

While humans routinely enjoy music, the book emphasizes unusual events and neurological patients, in short, departures from the norm. Sacks—himself a lover of music—reports on his own experiences with hallucinatory music and anhedonia (loss of pleasure) in hearing music. He describes going to hear the great baritone Dietrich Fischer-Dieskau but finding that he could not, on that day, perceive the beauty of the music. Another condition “amusia,” or loss of musical ability, can be chronic, acquired, or temporary.

Some patients have had injuries or diseases of the brain that change how music is perceived. A man hit by lightning is suddenly obsessed with piano music. Another man (who survived a brain infection) has amnesia about many things but can still make and conduct music at a professional level. The concert pianist Leon Fleisher visits Sacks to discuss his dystonia, or loss of muscle function in one hand (with implications for the brain). Rolfing and Botox helped him heal and he returned to two-handed performances.

Sacks discusses other phenomena that involve brain structures, for example, perfect pitch; persons with this ability have “exaggerated asymmetry between the volumes of the right and left planum temporale” (128). People who experience synesthesia (perceiving notes as colors) have cross activation of neurons in different areas of the brain. Professional musicians (and patients with Tourette’s) demonstrate cortical plasticity, that is they have expanded areas of the brain for particular uses. Children with Williams syndrome have brains influenced by a microdeletion of genes on one chromosome; they have some cognitive deficits and also a great responsiveness to music. For some conditions, the brain determines all; for others, behavior components are also important.


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Annotated by:
Duffin, Jacalyn

Primary Category: Visual Arts / Painting/Drawing

Genre: Art with Commentary

Summary:

The basis for this autobiographical essay on the experience of having a malignancy are 92 illustrations, all the work of the author; they include 32 ink or woodcut sketches, 24 charcoal drawings, and many acrylic paintings (16 in full colour). Pope's images evoke the dependence, fear, loneliness, pain, and even the mutilation surrounding cancer illness and therapy.

He describes in plain language the course of his own illness, diagnosis, and treatment; he also relates the experiences of a few fellow patients. Most intriguing is his ready description of the stories behind his pictures: who posed, how he painted them, and what exactly he was trying to convey. When the book was published, Pope was in a hard-won remission from Hodgkin's Disease, but he died the following year of treatment-induced bone marrow failure.

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