Showing 31 - 40 of 258 annotations tagged with the keyword "Illness Narrative/Pathography"

Epileptic

B., David

Last Updated: Nov-10-2013
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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Syndrome E

Thilliez, Franck

Last Updated: Aug-26-2013
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

A movie buff in northern France goes blind after watching a short anonymous horror film. He calls on Lucie his ex-girlfriend and a cop in Lille, to take the film to an expert film analyst. The expert demonstrates that the film, made in Canada in 1955, contains subliminal images and a whole other hidden movie of little girls torturing rabbits. He is soon found brutally murdered and the film stolen.

Four bodies missing part of their skulls, their eyes, and hands are found buried by a crew laying a pipeline and the profiler Sharko is brought in to explore the crime. They make a connection to a triple murder of girls in Egypt in 1994—the three girls who did not know each other were found in different places with their brains and eyes missing.

Sharko and Lucie begin to unravel the mystery by tracking the people in the film and those who made it. Sharko goes to Egypt; she goes to Canada –both nearly lose their lives as a result. Their research brings them closer to linking the seemingly disparate murders to occult military operations, involving the French Foreign Legion and the CIA.

They solve the crime, but the ending is disturbing.

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Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

The writer opens the volume by discussing the ways in which the poetry created by the affected person differs from the narrative form of describing the experience of illness—the classic “pathography.”  The essays in the collection demonstrate, by using examples, some of the unique qualities of the poem as an alternative to a prose narrative progression as well as the ambiguities introduced by the language of poetry. The discussions of the poetry presented provide the reader with guidance to the acceptance of poems in their “own terms” in order to understand the poet’s internal sense of the meaning of illness.  By allowing new and different information to become available for consideration the careful reader may gain new insights into the lives of those who are ill or disabled.

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

The author was the first blind physician to be licensed in Canada. Her autobiography is also an autopathography.

From her anger over developing severe diabetes as a teenager, through her relentless pursuit of a scientific degree and medical school, through a brief failed marriage – followed by the tragedy of completely losing her sight while still in training, to a rewarding and responsible career as a palliative care physician and educator.

Sustained by her religious faith and by loyal family members and friends, Poulson explains choices, compromises and supports that allowed her to continue studying and working in Montreal and later in Toronto.

Her complications from diabetes were numerous, and included heart disease for which she required surgery. Then she developed breast cancer, which eventually metastasized. In closing her narrative, she knows it will likely take her life.

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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In 1904, the 19 year-old Russian Jewish Sabina Spielrein (Keira Knightley) is admitted to Burgholzi clinic under the care of Dr. Carl Jung (Michael Fassbender) who is beginning to adopt the talk-therapy methods of psychoanalysis promoted by Sigmund Freud (Viggo Mortensen). 

She is hysterical and difficult to control, but she is also bright and has been studying to become a doctor. Jung slowly breaks through her resistence using dream interpretation and word association; eventually she reveals that her mental distress has its origin in her relationship with her father. He would punish her physically and she found it sexually exciting. 

The married Jung is obsessed with his patient and seduces her. They conduct a heated affair that entails sessions of bondage and beating, that they pursue almost like a scientific experiment.

On this background, Jung is becoming the protégé and anticipated heir of Freud—but they disagree over whether or not psychotherapy can cure. Spielrein recovers and goes on to become a physician and psychiatrist who develops her own methods of therapy. Freud comes to admire her and Jung is torn by jealousy. 

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Open Heart

Wiesel, Elie

Last Updated: Feb-01-2013

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Elie Wiesel, 82-years-old, has pain that he thinks is in his stomach or esophagus, perhaps caused by his chronic acid reflux.  After tests, however, doctors diagnose cardiac illness and insist on immediate surgery. Reluctant to go to the hospital, Wiesel dawdles in his office. When he does go, doctors believe a stent will do the job. Instead, the intervention becomes a quintuple bypass.

This brief memoir—a scant 8,000 words—presents the “open heart” of a gifted writer as he contemplates his open-heart surgery, his past life, and the future. He asks himself basic, even primal questions about life, death, and the nature of God.            

Although a man with an extraordinary career—prizes, fame, honorary doctorates, friends in high places, professorships—Wiesel experiences and describes ordinary feelings of anxiety, pain, and doubts about his cardiac emergency and possible death. His stylistic gifts describe frankly and vividly a patient’s fears. As many have observed, patients with a serious disease have two difficulties, the disease itself and their emotional responses to that disease.  As Wiesel is wheeled into the OR, he looks back on his wife and son; he wonders whether he will ever see them again.            

He writes that his “thoughts jump wildly; I am disoriented.” He recalls a friend undergoing similar surgery; she died on the table. He says he can’t follow the jargon of physicians. The texture of the prose is rhapsodic, jumping from the present to memories, many of them about war, his past surgeries, or important family events. This short book has 26 “chapters,” some just half a page; they are like journal entries.

As he slowly recovers, he feels pain and has visions of hell, including the concept of ultimate judgment. “Evidently, I have prayed poorly…; otherwise why would the Lord, by definition just and merciful, punish me in this way?” (p. 38).  Because he has a “condemned body,” he feels he must search his soul. In the longest chapter of the book, he reviews several of his writings.

Wiesel asks some of the questions from his famous novel Night (La nuit, 1958).  If there is a God, why is there evil? Auschwitz, he says, is both a human tragedy and “a theological scandal” (p. 67). Nonetheless, he affirms, “Since God is, He is to be found in the questions as well as in the answers” (p. 69).

At the end, he still has some pain but feels much gratitude for his continuing active life and for his grandchildren.

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Summary:

This book describes San Francisco’s Laguna Honda Hospital, where Victoria Sweet worked as a doctor for 20 years. In the tradition of the Hôtel-Dieu in Paris (literally “God’s Hotel”), Laguna Honda cares for the sickest and poorest patients, many staying there indefinitely because there is no alternative for them. Sweet learns from her long experience at Laguna Honda that “Slow Medicine” has benefits, that a holistic or unified view of patients works best, and that the reductionism and specialization of modern medicine has limitations and costs. During these years Sweet becomes fascinated by the medieval abbess Hildegard of Bingen and earns a Ph.D. focusing on medieval medicine. At the same time (and increasingly) various forces—economic, legal, political, bureaucratic—cause many changes at Laguna Honda, mostly contrary to Sweet’s vision of medicine.

            Part history, part memoir, part social criticism, the book is informative, entertaining, and important for its discussion of the care of our least-well-off citizens and for its perspectives on modern, Western medicine.         

            There are three intertwining strands to this engaging book: Sweet’s medical evolution as a physician, the changes in Laguna Honda, and her investigations of Hildegard of Bingen and other spiritual matters.

            Sweet joins up with Laguna Honda initially for only two months, but she finds the hospital and her work there so fascinating that she stays for 20 years. As an almshouse, Laguna Honda takes care of indigent patients, most with complicated medical conditions, including mental illness and dependencies on alcohol and/or drugs. Many of these cases come from the County Hospital with continuing (but not carefully reviewed) drug treatments. Every 15 or 20 pages, Sweet describes the dilemmas of a particular patient, and her medical (and personal) attention to that patient. The cases are vivid and instructive.

   Clearly Laguna Honda is a major figure on the book; we can even consider it (or “her”) a beloved character and a teacher to the young Dr. Sweet, who learns three principles from her work there: hospitality, community, and charity. 

Because Laguna Honda is old-fashioned in many ways, Sweet reads her own X-rays, goes the to lab to see results, and spends large amounts of time with each patient. Laguna Honda has an aviary, a farm with barnyard, and a solarium; such features help to heal the whole person. While respectful of modern medicine, Sweet slowly learns that a careful review of a patient through Slow Medicine is more accurate and more cost-efficient than standard, reductionist, high-tech medicine. She comes to respect approaches from “premodern” medicine, including that of Hippocrates and Hildegard.

  The second strand is the evolution of Laguna Honda itself. Sweet describes a variety of pressures: the recommendations of consulting firms, rulings from the Department of Justice, a lawsuit, financial difficulties (including fiscal mismanagement), administrators focused on a narrow concept of efficiency, a utilization review board, forms and more forms, and a pervasive sense that modern (including Evidence Based Medicine) is always good. All these and more create a “relentless pressure squeezing the hospital’s Old Medicine into the New Health Care” (p. 322). Sweet demonstrates that her Slow Medicine can actually save money in the long run. Confident that her way is better, she proposes an “ecomedicine unit” that she would match against the modern, “efficient” units in a two-year experiment. (For more information on her concept of ecomedicine proposal, see http://www.victoriasweet.com/.)

            As the hospital is “modernized,” many important features of the old place are gone and many “new and improved” aspects don’t work. Somehow there are no rooms for physicians in the new building while there is plenty of space for administrators and managers. A sophisticated computer system doesn’t work. Sweet doesn’t say “I told you so” directly, but we get the picture.

            The third strand is Sweet’s investigations of spirituality and pilgrimage. She is fascinated by Hildegard’s notions of the healing power of nature, the ability of the body to heal itself, and wholeness as an aim for a person and for a community. Sweet attends a Swiss conference on Hildegard. She hikes the pilgrimage route from France to Santiago de Compostela in four installments and considers notions of pilgrimage. She feels called to pursue her ecomedicine project and to write this book.           

            By the end of the book, both Sweet and Laguna Honda have changed and are now headed in different directions. 

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Our Cancer Year

Pekar, Harvey; Brabner, Joyce

Last Updated: Oct-17-2012
Annotated by:
Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

The year is 1990; a lump in the groin which Harvey had ignored has enlarged and his wife convinces him to have it checked out. It turns out to be a lymphoma and thus begins the yearlong chronicle. Intertwined with the couple's struggle with diagnosis and treatment is their decision to buy a home, and Joyce's work with an international group of teenagers who have survived war. However, the bulk of this unconventional work depicts in a stark and straightforward way the energy necessary to survive not just cancer, but cancer treatment.

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Annotated by:
Poirier, Suzanne

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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