Showing 131 - 140 of 704 annotations tagged with the keyword "Illness and the Family"
The narrator of this novel, fifteen-year-old Christopher Boone, is autistic (or, more accurately, probably, has Asperger's Syndrome). He lives with his father and believes his mother died two years before. Christopher is extremely good at mathematics, seems to have a photographic memory, but does not like novels (other than detective stories, which are about observation and logic), because he cannot empathize with human emotions or make sense of the indirect or figurative. For Christopher, metaphors, like fictions, are lies. He is very fond of dogs, and hates to be touched by people.
When a neighbour's dog is killed, he decides to investigate and, with the encouragement of his teacher, to write a book about his investigation. He quickly makes some very disturbing discoveries. He learns that his mother is not dead after all, but living in London with the husband of the dead dog's owner. The fact that his father has lied to him devastates Christopher. He runs away to London to find his mother, and his courage and tenacity allow him to solve not only the mystery of the dog's death but that of his family's past and future.
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).
Professor Samuel D. Gross of Jefferson Medical College is demonstrating an operation for osteomyelitis of the femur in the surgical amphitheater in 1875 in this highly dramatic, powerful scene. Light glints off his forehead, and his visage is stern, calm, and surrounded by a halo of gray-white hair. The bloody fingers of his right hand hold a blood-tipped scalpel. He appears to have just made an incision and is turning away to demonstrate his work.
To the surgeon’s left is the patient, lying in right lateral decubitus position, with exposed leg and buttocks. Assistants are retracting the wound, further dissecting within it, and holding the patient’s legs. Blood is on their hands, instruments, and the patient’s leg. The patient’s face is obscured by the chloroform soaked towel that the anesthetist is using to administer general anesthesia. The white of this towel and the operating table’s sheet are the only other bright white values besides the surgeon’s head in this mostly dark painting.
Adding to the drama is the stricken pose of the patient’s female relative--to the surgeon’s right. For charity cases, a family member was required to be present during the surgery. She averts her head and raises her hands, clenched in a claw-like fashion, to block her view.
In the gallery are variously interested and disinterested observers--mostly medical students--in casual poses and dimly seen. The exception is the artist’s self-portrayal--he is studiously drawing in the front row. Dr. Gross’s son (also a surgeon) is standing in the entry tunnel.
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.
In his preface to Amazing Change, Robert Carroll speaks directly about the power of poetry to heal. At a time of great personal loss, he says, "I began writing as a way of dealing with the inchoate, yet overwhelming, feelings I was experiencing... hopefully, to facilitate a healing process for myself." The poems collected in Amazing Change, which bears the subtitle "Poetry of Healing and Transformation: The Wisdom That Illness, Death and Dying Provide," reveal the depth and power of that healing process. They show the reader that poetic healing not only engages a person in self-discovery, but also in sharing that discovery with others. Wholeness is a community project.
While Amazing Change deals with serious subjects, many of the poems approach the subjects with humor and a light touch of irony. This is particularly true in "Dr. Bob's Psychomedical Poetics--Infomercial 1" (pp. 78-80) and "Dr. Bob's Psychomedical Poetics--Infomercial 2" (pp. 109-111). "Spiritual Soup" (p. 93) is another example of the value of humor in the good life, along with other core ingredients like marriage, prayer, hospitality, blues, hope, and pot luck.
Among the finest poems in this collection is "Kaddesh for My Father" (pp. 47-53). Written in filial homage to the poet's father, in artistic homage to Allen Ginsberg, and in spiritual homage to the Judaic tradition, "Kaddesh for My Father" seamlessly integrates personal detail and anecdote about his father with ritualized expressions of prayer and emotion. In this and many other poems, Carroll employs poetic form and/or historical exemplars to enhance the meaning of his work, but never allows them to constrain or dilute his personal vision.
Summary:The book's chapters derive from a conference entitled "Representing Autism: Writing, Cognition, Disability" held in 2005. Contributors are scholars of English, communication studies, psychology, and other disciplines; some are on the autism spectrum themselves or are parents of autistic people. The book attempts to address what editor Mark Osteen in his introduction cites as a deficit in the field of disability studies, namely that the field has ignored cognitive disabilities. Osteen notes that autism is a spectrum not only among people but within individuals: "any given autistic person's abilities will occupy different locations on [the spectrum] at different times" (7) but a severely autistic person is not merely "different." The editor also addresses the question of self- representation, arguing that "we must strive to speak not for but with those unable or unwilling to communicate through orthodox modes" (7).
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).