Showing 71 - 80 of 274 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Tinkers

Harding, Paul

Last Updated: Jul-06-2010
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

George Washington Crosby is dying from kidney failure. The eighty-year-old man has a crumbling body - Parkinson's disease, cancer, diabetes, and previous heart attacks - and a murky mind. He is hallucinating and his memories are disordered. George occupies a hospital bed in the living room of a house that he constructed himself. His family keeps him company as they await his imminent demise.

Some of George's thoughts revolve around his passion for clocks and his skill in repairing them. Most of his memories center on his father, Howard Aaron Crosby. About seventy years earlier, Howard owned a wooden wagon and a horse and scratched out a living as a tinker and a peddler of household goods. Howard's father had been a Methodist minister who exhibited worsening signs of mental illness. The man was eventually escorted out of his home. Only a young boy at the time, Howard would never see his father again.

Howard suffered from frequent and violent epileptic seizures. His wife and the family doctor thought Howard should be admitted to the Eastern Maine State Hospital, an institution housing feebleminded and insane individuals. Howard had a different opinion. One evening, he left his wife and four children and headed to Philadelphia. He took a new name and a new wife. He found work in a grocery store. The frequency of his seizures decreased dramatically.

George's final memory before death is a vivid one. He recalls a Christmas dinner in 1953. Someone is at the door. It is a surprise (and brief) visit by Howard to George's house. It is the first time that he has seen his father since George was twelve.

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

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Summary:

Sixty-year old Martha DeClerq cares for her mentally disabled sister, Pauline (Dora van der Groen), in a small town between Brussels and the seaside. Pauline cannot feed herself, tie her shoes, or speak in full sentences; she is stubborn, loving, occasionally mischievous, and particularly devoted to her sister, Paulette (Ann Petersen), who owns a small, tidy shop in town. Cecile (Rosemarie Bergmans), the youngest sister, lives in Brussels with a French intellectual, Albert, and has little contact with her siblings.

When Martha dies, her will stipulates that her estate be split equally between the three sisters, only if Paulette and Cecile care for Pauline themselves. They agree to share Pauline’s care. Although the sisters are fond of Pauline, their relationship with her is awkward and tentative. Initially, Paulette brings Pauline home, and they negotiate the new living arrangements with a mixture of embarrassment and kindness, frustration and delight. When the burden of caring for her sister becomes overwhelming, Pauline is deposited in Brussels at Cecile’s tiny, meticulously kept apartment. When these arrangements become unworkable, Pauline is eventually institutionalized.

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Annotated by:
Clark, Stephanie Brown

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

Co-authored by a Professor of English Literature and her physician husband, a Professor of Medicine, this is a readable interdisciplinary commentary on fourteen operas (19th and 20th century) in which particular diseases are represented, including mostly epidemic infectious diseases such as tuberculosis, syphilis, cholera, and AIDS. The analysis of each opera combines solid literary analysis of language and metaphors with fascinating historical information on the contemporaneous medical understandings of the diseases, and a sophisticated discussion of the social, sexual and cultural representations of these diseases.

The most persuasive chapters include "The Tubercular Heroine" in La Boheme, and La Traviata; "Syphilis, Suffering and Social Order" in Parsifal; "The Pox Revisited" in 20th century operas, Lulu and Rake’s Progress; the final chapter, "Life-and-Death Passion" compares theatrical representations of AIDS in Angels in America (see annotation) with cholera, TB, and syphilis.

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The Odds of Recovery

Friedrich, Su

Last Updated: Jun-01-2010
Annotated by:
Aull, Felice

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

This is an imaginative documentary film by director-producer Su Friedrich, of her experiences with health problems, physicians, the health-care system, and how these affected her relationship with her female partner over a period of more than two decades. The narrator-subject takes us through her numerous surgeries, hormonal (prolactin) imbalance, and her growing disenchantment with the traditional health-care system.

She films herself: getting dressed into the "humiliating" paper garb prior to being examined by her physician; in exchanges with her various physicians; reading from medical texts and self-help books as she tries to understand her condition(s); taking t'ai chi classes and preparing herbal potions; gardening and doing needle work. As the film ends, she is grappling with the prospect of menopause, but she feels that she has taken charge of her body and of her own care, that she tends herself as she tends her garden.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

In 2008, editor and physician Paul Gross launched a new online publication, "Pulse--voices from the heart of medicine" (published by the Department of Family and Social Medicine, Albert Einstein College of Medicine and Montefiore Medical Center). This anthology contains every poem and first-person narrative published during Pulse's first year, arranged in five sections corresponding to publication date and not to theme: Spring, Summer, Autumn, Winter, and Spring.  Paul Gross, in his introduction, states "After more than a decade of practice as a family doctor, I came to appreciate that the science I'd learned in medical school, though powerful and useful, was also incomplete . . . . it contained much truth about illness and healing, but not the whole truth" (xvii).  Like many other caregivers, Gross discovered "that writing and sharing my healthcare stories with others was therapeutic" (xviii).  He looked to "Sun Magazine" as an example of how first person narratives, both prose and poems, could turn "hurts and triumphs into something potentially beautiful, funny or moving" (xviii). 

The poems and prose that arrive every Friday online to Pulse's thousands of subscribers (and the selections in this anthology) are carefully screened by the editors according to these guidelines: the stories have to be first-person, and they have to be true, recounting the writer's own experience.  Submissions are accepted from any person involved in healthcare.  The language used must be "clear, simple language.  No medical jargon. No arcane literary devices" (xx).  Gross and his editors decided that Pulse would not be a medical journal nor a literary magazine--its purpose fell outside the perimeters of both genres--and so Pulse, and this anthology, offers work that is, in a refreshing and honest way, different from the slick or more polished poetry and prose that might be found elsewhere.

In reading this anthology from cover to cover, and so from season to season, I found that the poems and prose seemed to fall into several categories: Personal musings, in which authors relate healthcare experiences that engender intimate and revealing narratives about their own lives--among the best of these are "Well Baby Check," p.3; "Finding Innisfree," p. 31; "First Patient," p. 39; "Losing Tyrek," p. 45; "Carmen's Story," p. 62; and "Chemo? No Thanks," p. 106.  Other pieces are commentaries on the other side of healthcare, the one that cries out for reform and affects both patients and caregivers.  Among the best of these are "Redesigning the Practice of Medicine," p. 9; "A Brush with the Beast," p. 22; "Rx," p. 60; "Halloween Horrors," p. 69; and "Brain Cutting," p. 136.

Other pieces are humorous ("Aunt Helen Sees a Ghost," p. 6) or political ("My War Story," p. 11), and many poems and prose pieces speak of patient encounters or about being a patient, some more anecdotal, relating a specific incident that affected the author ("Once," p. 41) and others multi-layered, some relating medical student or intern experiences ("Jeannie," p. 48; "A View from Nepal," p. 87; "Ripped from the Headlights," p. 90; "Snowscape," p. 97; "First Night Call," p. 100; and "Wounded Messenger," p. 114.)  The "category" I found most interesting and most unique are the selections I will call "confessions."  These writings--demonstrating openess and bravery on the part of the authors--tell of regrets, mistakes, sorrows, wrong calls and other mishaps that occur, daily, in the practice of healthcare.  In these, the most human face of caregiving is revealed.  Although most of the pieces in this anthology contain elements of "confession," the most specifically revealing include "Mothers and Meaning," p. 14; "Physician's Exasperation," p. 44; "Confidential," p. 53; "My Patient, My Friend," p. 73; and "Apologies," p. 104.

Editor's note: Coincidentally, a recent relevant paper on confessional writing by physicians expounds further on this topic:"Bless Me Reader for I Have Sinned: physicians and confessional writing" by Delese Wear and Therese Jones (Perspectives in Biology and Medicine, Vo. 53, No.2, Spring 2010, pp. 215-30).

 

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Summary:

Some 40 years after a ceasefire that ended the Cylon wars, the 12 human colonies across the galaxy have been lulled into a state of calm complacence.  This is abruptly interrupted by a Cylon attack that annihilates billions of humans, leaving only 50,000 survivors in a small fleet of ships, led by the one remaining ship from the Colonial Fleet, the Battlestar Galactica.  Fleeing the Cylons, they set out to find the legendary 13th Colony: Earth.

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The Unnamed

Ferris, Joshua

Last Updated: Mar-29-2010
Annotated by:
Henderson, Schuyler

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Tim Farnsworth is a well-regarded lawyer at a fancy, cutthroat midtown law firm in New York City, with a devoted, if occasionally uncertain, wife and a rebellious teenage daughter.  Their comfortable marriage has survived her bout with cancer and his earlier bout with a strange condition: he will suddenly be compelled to walk, setting out on foot regardless of where he is or what he is doing, unable to stop himself until he eventually curls up asleep, whatever the weather and conditions around him.  He is about to lead the defence of a prominent businessman charged in the slaying of his wife when the condition abruptly returns.

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Annotated by:
Aull, Felice

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The film opens on the Coeur d'Alene Indian Reservation -- called "the rez" by its inhabitants -- in 1998. Immediately there is a flashback to July 4, 1976 when the community was celebrating "white man's Independence Day" in drunken abandon. Accidentally Arnold Joseph (Gary Farmer) sets an uncontrollable fire to his neighbor's house, killing the couple who live there. But Joseph catches the baby, Thomas, when he is thrown out of a second story window from the burning house. The rescued Thomas (Evan Adams) is brought up by his grandmother and along side of Victor (Adam Beach), Arnold Joseph's son of about the same age. Joseph keeps on drinking but is in despair about the conflagration and its consequences.

12-year-old Victor watches sullenly while his parents drink until one night he smashes all their beer bottles. This action is a wake-up call for Victor's mother, Arlene (Tantoo Cardinal), who insists that she and Arnold both stop drinking. She chases Arnold out of the house; he leaves, never to return, while Victor watches, sobbing. These elements of the story occur in flashbacks while the 20-year-old Victor and Thomas travel by bus to retrieve whatever they can of Arnold Joseph, who has died outside of Phoenix. The remaining story unfolds in that forsaken spot where Joseph lived in a trailer and befriended Suzy Song, a young Indian woman originally from New York.

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Love in the Ruins

Percy, Walker

Last Updated: Mar-22-2010
Annotated by:
Wear, Delese

Primary Category: Literature / Fiction

Genre: Novel

Summary:

First published in 1971 and subtitled, The Adventures of a Bad Catholic at a Time Near the End of the World, the novel is a satire of the limits of technology, the medicalization of the human spirit, and the trivializing tendencies of 20th century medical science. Dr. Tom More is an "impaired" psychiatrist: an alcoholic, a womanizer, and a half-hearted clinician. He develops the lapsometer, a kind of stethoscope of the human spirit with which he plans to cure humankind’s spiritual illnesses. Living daily with the contempt of his colleagues, he tries to prove himself and runs into all kinds of mischief, allowing the author to spoof the ills of medicine as it is practiced today.

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