Showing 251 - 260 of 273 annotations tagged with the keyword "Illness Narrative/Pathography"
This remarkable collection of essays, both personal and scientific, is written by a remarkable man, Stephen Hawking, theoretical physicist and Lucasian Professor of Mathematics at Cambridge University (a chair once held by Isaac Newton). Unlike Hawking's earlier bestseller, A Brief History of Time, which was written for the lay public to explain current theories of the universe, this book is a mix of essays, speeches, and even a radio show transcript that were originally produced from 1976 to 1992 and whose intended audiences were varied, although none of the works are purely technical.
Hawking was diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease in the USA, motor neuron disease in the UK) at the age of 21 during his first year of graduate school at Cambridge, though he had already noticed weakness the prior year at Oxford. As he describes in "My Experience with ALS," Hawking experienced a rapid deterioration of function and hence depression.
However, during his hospitalization, he also saw a boy die of leukemia, which made him realize that things could be worse. Hawking married, finished his dissertation, fathered children, and went on to develop innovative theories in physics, such as thermal emission by black holes.
The book begins and ends with personal topics-–the first two essays concern his childhood and education, and the last is a transcript of the BBC radio show, "Desert Island Discs," in which the celebrity is asked to name and describe 8 musical selections and one book he or she would choose to have if stranded on a desert island. Hawking describes how important communication is to him, and the computer program designed by Walt Woltosz, which enables him to have an artificial voice (albeit with an American accent), since he lost his natural ability to speak due to the tracheostomy that was required in 1985. Hawking's incredible will to live and his sense of humor come through in this broadcast, as they do in the scientific curiosity so evident in the essays about physics.
The narrator describes his chronic illness of two or more years duration. He likens his former good health to "an island / going out of sight behind you." His days are filled with visits to the doctor, medicine, and a loss of interest in "wanting to make love . . . . " He describes going through stages: feelings of being punished, which generate "an enormous effort to be good"; anger; fear of death; "a lake of grief"; "neurotic vigilance"; and finally, "only a desire to be done." In the end, he is still en route.
Anne Finger, a writer and disabled activist whose childhood polio left her with a disability, tells the story of her pregnancy, her birth experience at home and in the hospital, and the serious health problems her newborn son experienced.
Dr. Pensack writes in the first chapter of his memoir: "Through a lifetime I have been in the process of dying, consistently surprised when reminded that life is appallingly brief, and briefer still for me. The prospect of an early death has amounted to little more than embarrassment and loneliness, even though the routine of living can be, and usually is, just one goddamn thing after another. A new heart was somehow supposed to be my bloody-red carpet of victory." (p. 7)
At age 4, Pensack's mother died of IHSS, Idiopathic Hypertrophic Subaortic Stenosis--now known as HCM, Hypertrophic Cardiomyopathy, a genetically inherited, progressive disease of heart muscle that results in early death. At age 15, Pensack receives the terrible news of his own fate--the disease afflicts both Pensack and his older brother--and thus launches a life of near death experiences, numerous hospitalizations, early experiences at the National Institutes of Health with early investigators of the disease, pursuit of his own medical training and eventual specialty training in psychiatry, marriage and children, and ultimately, the waiting and eventual transplantation of a younger man's heart into his chest at the University of Colorado Health Sciences Center when Pensack was 43.
Raising Lazarus tells of Pensack's journey through much of this, including his descent into madness, his fury and anger with medical colleagues, his poignant relationship with the heart surgeon who eventually performs the transplant, and the importance of his family in his refusal to die. While much of the book tells of the events leading to the transplant and post-operative period of Pensack's life, the reader learns of Pensack's early losses, including the death of his mother, and how these experiences shape the values of a gutsy and determined survivor, a man who continually returns to the struggle.
Sidney Winawer is a New York physician specializing in gastrointestinal cancers. When his wife, Andrea, is diagnosed with stomach cancer, he is made to see his own work from a new perspective, that of the patient and her family. The experience gives him new insights into aspects of health care he had not considered before, such as the alienating effects of some hospital routines on patient and family, the patient's need to find hope from any source, regardless of its intellectual provenance, and, encouragingly, the life-enhancing effects on his family as they join Andrea in her determined struggle to prolong and enrich whatever time remains for her.
For the first time, Winawer explores alternative and complementary approaches to cancer treatment, including meditation, antioxidant therapies, hyperthermia, and other attempts to stimulate the immune system. At first resistant, he comes to recognize the need for the terminally ill and their families to have access to as many resources as possible, and eventually it becomes his "mission" to emphasize the need for practitioners of conventional medicine to learn as much as possible about integrative medicine.
An interesting subplot is the story of Dr. Casper Schmidt, Andrea's psychiatrist, whose remarkable knowledge of new treatments for terminal illness is explained when he dies of AIDS. As another physician led by personal experience of disease to explore beyond the boundaries of conventional therapies, Schmidt forms an illuminating counterpoint to Winawer himself.
In 1996, George Delury was sentenced to four months in jail for assisting in the suicide of his wife, Myrna Lebov. In this book, Delury tells the story of his marriage, his wife's struggle with multiple sclerosis, her decision to end her life, his own role in helping her achieve this, and the subsequent legal and media ramifications that culminated in his indictment.
The author narrates this account of the death of her husband, Miecu, a Polish physician, from cancer of the esophagus. The couple meet in 1954, marry in 1962, and in 1966 Miecu is found to have "heart trouble" and some "gastric problems." A gastrectomy is performed, but the cancer has metastasized and, after more surgery, his wife takes him home, and cares for him until he dies.
Summary:This book is a collection of photographs of patients and their family members, caregivers, administrators, and others in an Oregon nursing home. Photographs are accompanied by commentaries by the subjects, who talk about their lives, their suffering, their work, their survival.
At the age of 21, shortly after moving to Ithaca, New York, to begin a new life with her fiance, the author experienced a stroke that left her aphasic and partially paralyzed. She returned home to Altoona, Pennsylvania, where she underwent months of physical therapy and rehabilitation.
This memoir takes us through the process of self-discovery by which Barbara Newborn learned first to understand and cope with her disabilities and then to overcome them. It recounts her depression and determination, her disappointment and exhilaration. Return to Ithaca ends about nine months after the stroke when the author had indeed returned to Ithaca to begin (once again) a new life.
In 1984 Handler was a moderately successful 23 year old New York City actor, when he developed acute myelogenous leukemia. Strongly supported by his girlfriend and family, Handler underwent induction and, later, consolidation chemotherapy at Sloan-Kettering Memorial Hospital, where he also began his long experience (the "comedy of terrors" or, perhaps more appropriately, the "tragedy of errors") of a harsh, hostile medical environment populated by arrogant physicians, condescending nurses, and a host of unhelpful minor characters.
Handler carries us briskly through his first remission, the impact of his illness on his family and personal relationships, his experience with nonconventional healing (Simonton Cancer Center), his return to work on Broadway, his relapse, and the agony of a second round of induction chemotherapy at Sloan-Kettering.
Subsequently, he goes to Johns Hopkins Hospital to undergo the rigors of an autologous bone marrow transplant. At Hopkins he discovers to his surprise a medical setting far different from Sloan-Kettering: communicative, compassionate physicians and a patient-centered healing environment. Even the two hospitals' sperm banks reflect this radical difference in approach.
After surviving his transplant and a subsequent round of serious infections, Handler resumes his life. He realizes that most of the time nowadays he is not in touch with the sense of joy and gratitude for each moment that the illness taught him. Yet, these feelings exist below his consciousness; sometimes he steps through "a little doorway near the floor of my consciousness" and experiences his life in a simpler, more profound way.