Showing 241 - 250 of 278 annotations tagged with the keyword "Chronic Illness/Chronic Disease"
Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.
The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.
The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.
For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.
Summary:A man begins to lose his word-finding abilities, his ability to perform everyday activities and his ability to communicate with his wife. He realizes his growing losses and incapacities. Even as he worries how to make amends to his wife, he grows distant and isolated. The poem ends with a vivid scene: the man stands in front of the woodpile with the axe raised--he looks at but does not recognize his wife screaming behind the closed bay window. "[H]e never / hears what it was she never said."
The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.
Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."
TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.
The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.
Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.
Constructed as a triptych, the novel chronicles several generations of a Scottish family, the McLeod’s, across three Junes: Part I Collies, 1989; Part II Upright, 1995; and Part III, Boys 1999. In the first part, patriarch Paul McLeod assuages his grief and loneliness following his wife’s death by traveling to Greece on a tour. He tells the tour guide about his wife’s lung cancer: "A terrible ordinary death, you might say. Or an ordinary terrible death." (p. 23) Paul’s unrequited yearning for Fern, a young artist, heralds a succession of missed opportunities for expressions of love involving the McLeod’s.
The second part is a first person narrative by Fenno, Paul’s eldest son. Fenno, the gay owner of a Manhattan bookstore, cares for Malachy, a New York Times music critic, who has AIDS. Paul’s death brings the three sons together (Fenno and his younger twin brothers David, a veterinarian who lives in Scotland with his wife Lillian, and Dennis, a chef, who arrives from France with his wife and children).
The family relationships are complicated, and David’s infertility leads to revelations about strengths and weakness of various family members. Meanwhile, Mal’s illness and his decisions about controlling the end of his life, also give Fenno insight into loyalties and family secrets.
The last section, a coda, reverts to third person narration and reintroduces Fern, now widowed due to a freak accident and also pregnant. Themes of parenthood, responsibility and relationships continue to be developed.
It was during a trip to Paris in 1985 to accept a prestigious writing award that William Styron first realized that the melancholy which had been descending upon him for months was part of the onset of a crippling depression. In this brief book, Styron describes his own experience and eventual recovery, and touches upon the history and clinical aspects of depression as he talks about the many writers who have also been afflicted with this disease.
Styron gives both a retrospective account of the beginnings of his illness, and details his own theories (his abrupt intolerance for alcohol, a possible family history, characters in his early writings in whom he described symptoms strikingly similar to those he would develop himself years later) about the origins of his depression.
A new graduate from medical school experiences her first seizure on the eve of beginning internship. Diagnostic workup reveals a mass in the wall of the third ventricle, which, at the time of surgery, is a vascular malformation. The narrative takes the reader through the four years of the author's struggle with her diagnosis, treatment and resultant disability, a seizure disorder.
Laced through the tale are patient vignettes, told from the vantage point of a newly sensitized doctor who is a long-term patient herself. Heymann is gently critical of many of the interactions she experienced with her physicians, attempting to chide her colleagues into being more sensitive to patient-centered concerns.
Summary:Piercy writes painfully and poignantly about the silent and slow death(s) from radiation exposure. In this nine stanza catalogue, she parades the incidents known or suspected to be the source of clusters of disease, disability and demise related to ignorant or irresponsible exposure of humans to nuclear testing and nuclear installations. She juxtaposes the beauties of nature, "The soft spring rain . . . " and the secret poisons with which man has contaminated her, ". . . blowing from the irradiated cloud." And, finally, she muses on the fact that we simply accept our symptoms instead of confronting our murderers.
Summary:This is a series of vignettes involving a small cluster of patients in an early twentieth century tuberculosis sanatorium located in Scotland. The stories are narrated by one of the patients who makes observations and predictions about his peers in the institution. The lives Maugham chooses to have narrated are those of two men, long-term residents, whose daily entertainment is to irritate one another. There is a mixture of humor and pathos in the dialogue between these two. The second story within a story is that of the developing love between a dying man and a moderately ill woman--and the decision they ultimately make about the importance of their relationship in the face of the man’s impending death.
Written by a Jungian psychoanalyst about her own experience with metastatic breast cancer, this memoir is a two year chronicle extending from the day of diagnosis through sequential remissions and relapse, to the remission following stem cell transplant. In the course of this voyage, the author deals with her own fear and anger, the range of responses elicited from family and friends, and her anxiety about the technology and impersonality of the health care system.
The book ends, but Middlebrook's story does not. She is feeling well as she recovers from her transplant. She knows she still has a lethal tumor. The only thing she doesn't know is when it will claim her life.
The story opens two years into the writer's undiagnosed hematological disorder, focusing the narrative on the two most significant issues in this young woman's life--her first experience with a love relationship that is to result in a long-term commitment, and the disease that for years is to affect the way she lives her day-to-day life. Breslin describes in considerable detail her encounters with hospitals and health care professionals, none of whom are able to diagnosis nor prognosticate but continue to treat each new symptom as it arises.
In the midst of this uncertainty which pervades the memoir, are the subtexts of the love between the author and her husband and the relationship she maintains with her father. The reader, presumably like the author herself, never learns the name of the mysterious illness that informs the tale.