Showing 71 - 80 of 704 annotations tagged with the keyword "Illness and the Family"
Summary:Carol Levine began a roiling odyssey as a caregiver when a car accident left her husband paralyzed and in need of 24-hour care. She regards her husband’s survival as “a testament to one of American medicine's major successes — saving the lives of trauma patients.” But once he returned to their home, Levine encountered a healthcare system that was fragmented, chaotic, and inequitable. Unprepared to address chronic care, it remained oblivious to her needs as her husband’s primary medical “provider,” as they would say. Written nine years after the accident and eight years into her care giving, Levine’s essay recounts the stress and isolation she experienced attempting to navigate that system, to perform unrelenting chores, and to sustain her employment. Her job was, after all, the source of her husband’s managed care insurance, which regularly managed to leave Levine with unpaid bills. Even her work in medical ethics and healthcare policy could not help her locate the assistance she needed to assure the well being of her husband or herself. Or of other care-giving families.
Summary:This anthology is a sequel to Pulse: The First Year (2010). Both anthologies are comprised of postings to the website “Pulse: voices from the heart of medicine,” an online publication that sends out short poems and prose pieces every Friday. As the website subtitle suggests, the topics are from the medical world, the writing is personal (not scientific), and the writers give voice to feelings and perceptions from their direct experience as care-givers, patients, or family members of patients. All the pieces are short (typically one to five pages), usually with a tight subject focus. For example, in "Touched," Karen Myers reports how massage has helped her muscular dystrophy.
Summary:Carol Levine's anthology of stories and poems about the intimate caregiving that takes place within families and among friends and lovers reminds us that the experience of illness reaches beyond clinicians and patients. It can also touch, enrich, and exasperate the lives of those who travel with patients into what Levine calls the land of limbo. This land oddly resembles the place where some Christian theologians believe lost souls wander indefinitely between heaven and hell. For Levine the limbo of familial caregiving is an unmapped territory. In it caregivers perform seemingly endless medical, social, and psychological labors without professional training and with feelings of isolation and uncertainty. Caregiving in this modern limbo, created by contemporary medicine's capacity to extend the lives of those with chronic conditions and terminal illnesses, has become, according to Levine, "a normative experience" (1).
This story centers on Lena, an immigrant teen from Ukraine, whose entire family has been traumatized and uprooted by family deaths during a violent pogrom. Relocated to Chicago, in a tiny apartment on Bittersweet Place, the family struggles to survive in the years prior to World War I. Wineberg’s tale of disrupted life and resettlement is weighted by formidable issues that stretch beyond the ordinary range of family experiences.
Lena, the intelligent, highly observant and resilient adolescent, narrates an unvarnished tale of survival for the extended family clustered together in this strange new world, but especially for herself. While the family’s economic and financial circumstances are difficult, her own life is made worse by an unkind teacher, mean-spirited classmates, and hormonal impulses. Her uncle touches her inappropriately, a favorite uncle goes mad, a cousin dies, and her mother, who is unfamiliar with the new world setting and mores, drives her crazy.
Nevertheless, Lena is a clear-eyed survivor exhibiting a surprising toughness of character and determination. For example, her introduction to sex is far more direct than might occur with most girls of that time. In addition, when her teacher fails cruelly to support her artistic talents, she shows amazing defiance. When she discovers that her father has a beautiful female friend, undoubtedly a lover, her consideration of this circumstance does not render the crushing blow that might be expected. In retrospect she is more adult, more mature than most young women might be in each of these situations. She is a remarkable young woman with a spirited edge.
Although Dr. Helman’s untimely death did not permit a final editing by this prodigious writer, the published edition is not a book-in-progress. An Amazing Murmur of the Heart: Feeling the Patient’s Beat represents a powerful and persistent continuation of observations and themes that grew out of medical education, close observations of physicians and patients, and his studies in anthropology. All of these forge an approach to patient care that is out of the ordinary.
As his previous writings suggest, Helman is passionate about medicine but concerned, equally about the emergence of those who fail to listen and to those who might be called techno-doctors. While professing his appreciation of and attraction to the magic machine or computer, he is mindful of its absence of emotion and ambiguity. “For this post-human body is one that exists mainly in abstract, immaterial form. It is a body that has become pure information.” (p. 11)
Chapters are comprised of stories about patients and their care providers, each representing complex facets that defy precise measurement, answers and conclusions. As Helman steadily notes, the physician must be an archeologist:
Most patients present their doctors with only the broken shards of human life—the one labeled infection, disease, suffering and pain each of these shards is only a small part of a much larger picture….the doctor will have to try and reconstruct the rest. (p.66)
In general, the chapters illustrate first an initial review of medical history, and then specific patient stories. Of the two, the story is most important. “Mask of Skin,” for example, begins with an overview of skin from Vesalius to the present: largest organ, stripped bare by anatomists, penetrated by disease, later scanned and X-Rayed, tattooed, re-fitted by surgeons, etc. That said, Helman the physician-anthropologist, moves from science to specific stories about patients whose skin may cover profound experiences, psychic and otherwise, that might be overlooked by a dermatologist. Although skin is involved in each of that chapter’s stories, the willing physician must dig deeper in his observations and caring manner to make more profound discoveries.
In a chapter entitle “Healing and Curing” the author describes an old friend, a practitioner who provides advice about patient care that ”was not included in his medical texts”. Patients are more than a diagnosis dressed in clothes. Doctors must make patients “feel seen, listened to, alive”. Always patients should be regarded as people who happen to be sick. From his admired colleague Helman learned to be an attentive listener to the "tiny, trivial, almost invisible things" in patient encounters and stories. To truly heal as well as cure requires the doctor to empathise with what the patient is feeling thereby requiring both an act of imagination and of the heart. The chapter, of course, continues with with stories that illustrate the points enunciated by his colleague and accepted by his disciple.
Summary:In the course of sharing her own experience of breast cancer diagnosis and treatment, the writer offers personal reflections on coping with each of a number of specific challenges most American women with breast cancer face: desperation, fear, sadness, anger, guilt, overwhelming choices about treatment, side-effects of treatment, grief, adjusting to a new "normal," shifts in relationship, and rethinking spirituality. She raises hard questions in a compassionate way, encouraging readers to use the experience of illness as an occasion for examining and growing into a new phase of psycho-spiritual maturity.
Summary:In this collection of essays on writers' end-of-life memoirs Berman combines a fine-tuned appreciation of literary strategies with reflections on how writers, who have defined themselves, their philosophies, their voices, and their values publicly, bring their life work to characteristic and fitting conclusions in writing about their own dying. The writers he considers cover a broad spectrum that ranges from Roland Barthes and Edward Said to Elisabeth Kübler-Ross and Tony Judt to Art Buchwald and Randy Pausch. Each essay offers insights into the writer's approaches to death and dying against the background of his or her earlier work.
Summary:A chubby boy with a vivid imagination and a terminally ill man intent on suicide share an adventure in survival on an extremely cold day. Robin plays make-believe as he heads to a pond in the woods. In the distance, he spots an emaciated man who appears to be wearing only pajamas. Fifty-three year old Don Eber is dying from cancer that's in his brain. Surgery and chemotherapy have not prevented its progress. He's come to the woods on this frigid day to die with dignity.
Annie Howard is beginning high school in Tacoma, Washington in 1950, four years after her father returned from World War II, having been blinded in combat. Her mother has opened her own beauty salon as a way of coping with her husband’s disability and the loss of earning power it has meant. Annie loves her father, and maintains a close relationship with him, but is dismayed by his recurrent depressions and his steady refusal to get a guide dog, go out into the world, and respond to invitations to volunteer with an organization that helps other veterans similarly afflicted. As the school year begins she meets two new friends, a Dutch brother and sister—refugees whose parents were killed in the war and who now live with an aunt and uncle. Through them, and ultimately through her father, Annie learns some hard truths about the lasting effects of trauma, about the role of acceptance in healing, and about how a more grown-up love involves willingness to accompany others through some of the darker dimensions of suffering.
Summary:Cartoonist Roz Chast's memoir is a rich, satiric, forthright, and at times deeply disturbing exploration of how she negotiated the decline of her aging parents. Disturbing because the description of all the elements with which she had to deal in easing them toward death highlights the myriad difficulties and complexities many of us will also face. Her account is centered on her relationship with her parents, moving back and forth between her childhood (unhappy) and the more recent past. Chast brings to life her father and mother's disparate personalities and makes no bones about her fraught interaction with them, especially with her mother, and her ambivalence about having to take responsibility for helping them in their final years,.