Showing 71 - 80 of 278 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
Summary:Perillo's essays offer a lively, variegated view from the wheelchair of a woman with multiple sclerosis who is also a naturalist, an outdoorswoman, a wife, and an award-winning writer. Not all of them focus on her condition, though observations about living with the disease occur in most, and are thematic to some. Most are also laced with wry humor. One comes to see in these sketches from the Pacific Northwest how full and rich a life it is possible to live while also fully acknowledging and even lamenting the loss of mobility. She invokes Thoreau several times, and her work may be easily situated in his tradition of personal, reflective essays on the natural world. For her, the natural world extends to the world of the body, linked as it is with the bodies of all living things.
Summary:As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
Summary:In Chronic Progressive, a collection of 151 short poems divided into three parts, Marion Deutsche Cohen, a well spouse, continues her startlingly candid account of caring for her husband Jeff that began in her previous collection, Epsilon Country (1995, see annotation). Part I of Chronic Progressive describes Cohen's frustrations during the last of the 16 years that she cared for Jeff at home, as multiple sclerosis left him almost completely dependent on her. Mother of four, a prolific writer, a poet, and a mathematician, Cohen describes unrelenting stress when family services and insurance providers fail her, when she feels she must protect the sanctity of her home as health care aides and agencies treat it like a hospital or nursing home, or when she's exhausted, which is most of the time. "It's a state, a / chronic state, a chronic progressive incurable state," she writes (55).
Summary:This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease. It does just that. Brilliantly.
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.
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.
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.
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.
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.
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).