Showing 591 - 600 of 874 annotations tagged with the keyword "Patient Experience"
When literature and cultural studies professor Michael Bérubé's son James was born in 1991, he was diagnosed with Down Syndrome. Negotiating various medical, social, and educational environments and the identities each assigns their son, Bérubé and Janet Lyon (his wife, a literature professor and former cardiac-ICU nurse), become effective advocates for Jamie and embark on a course of questions about the social systems that produce disabled identities and administer to those human differences termed significant ones. Bérubé engages these questions with a mixture of family experience (his own, and that of other families with disabilities), historical research, critical theory, and sophisticated critical analysis.
Born in Newnan, Georgia, and raised in Jackson, Florida, Cary Henderson was the first member of his family to go to college. He eventually earned a Ph.D. from Duke University and with his family, settled into an academic career as a history professor at James Madison University. In 1985, at the age of fifty-five, he was diagnosed with Alzheimer's disease.
As his ability to read and write deteriorated, Henderson began using a pocket recorder to tape what he called "the anecdotal career of an Alzheimer's patient" in order to help others "understand the world that they are now forced to live in" (4). His recorded journal spans the fall of 1991 to the summer of 1992. His wife and daughter began the long process of editing his tapes and were ultimately joined in the project by Nancy Andrews, award-winning photographer from The Washington Post, who provided images of Henderson to accompany his words.
Author and Oxford don, C. S. Lewis (Anthony Hopkins), lives a sheltered life as a bachelor, sharing a house with his brother. In 1952 he meets an American woman, Mrs. Joy Gresham (Debra Winger). They become friends when Joy moves to England with her young son, Douglas, divorcing her alcoholic husband; when Joy is in danger of losing her visa, Lewis agrees to marry her so that she can become a British citizen.
The marriage appears to be purely a technicality. This is in part because of Lewis’s emotional frigidity with people, which is contrasted with the profundity and energy of his engagement with books and ideas. Joy eventually confronts him about this, and at about the same time she is diagnosed with advanced cancer.
The prospect of her death disrupts Lewis’s ideas about God, suffering, and human relationships, prompting a crisis that leads him to recognize his love for her. Their legal marriage is consecrated in her hospital room and, after radiation treatment puts her in remission, Joy and her son move in with Lewis. After a few months, she dies. Lewis is left with a new knowledge of the real paradoxes of love, connection, loss, and suffering.
This book's title is from a Goethe poem, "The Holy Longing," translated from German in its entirety by Robert Bly: "And so long as you haven't experienced / this: to die and so to grow, / you are only a troubled guest / on the dark earth." Ten intensely personal essays tell of the suffering and everyday presence of pain of a severely disabled writer who has advancing multiple sclerosis, and of how, "in a very real sense, and entirely without design, death has become [her] life's work." (p. 13)
Beginning with her father's sudden death when she was a child, the essays describe her aging mother's expected death and the family's decision to take her off life support; her caretaker husband's diagnosis of metastatic cancer with uncertain prognosis; her own attempted suicide; death of friends, pets, including her beloved dog; and a young pen-pal executed on death row. If that weren't enough, a coda, her foster son's murder and again the decision to remove life-support, provides "[t]he end. For now." (p. 191)
Abba Kovner wrote these poems during and after his hospitalization at Sloan Kettering for throat cancer. His exile into the world of illness begins as he enters the hospital. "He fell asleep under strange skies" (p. 7) and in the hospital "the silence astounds on all / its many floors."(p. 11) [Throughout the book, Kovner refers to himself in the 3rd person.] He tries to pray: "Is there a prayer for one who prays like him / seething . . . " (p. 15) He decries "the infuriating confidence of the doctors." (p. 21) He celebrates the beauty and magnificence of New York. But then the bad news arrives: "When they told him they were going to cut away his vocal cords / entirely it was merely / a confirmation of what he already knew."(p. 31)
To the brisk, young hospital staff, he is just another patient, nothing but an "ancient shard”: "They could not imagine that this was a man / who had fought the world."(p. 36) Only Norma, the Puerto Rican night nurse, connects with him at a different, more human level. "He blushes / when Norma says: What a lovely / head of hair you have, sir!" (p. 88) As he prepares for the laryngectomy, images from the past invade his consciousness--Christmas Eve, 1941; the Vilna ghetto, where "the lice / got under your skin" (p. 68); and "a shoemaker, his name forgotten" (p. 74). The Holy Guests--the souls of Abraham, Isaac, Jacob, Joseph, Moses, Aaron, and David--also visit the sick room.
After the surgery, the conspiracy of optimism brings him along, carries him forward: "What a healthy recovery, / they said. And patted him on the shoulder / with admiration: You’re doing fine. Wow!" (p. 85) But this is at best a voiceless recovery: "From the wreckage of his voice / there arose a bubble / a tiny bubble . . . " (p. 101) Eventually, the patient leaves the hospital, leaves New York, and arrives home: "Fearful from the moment of arrival: he / watches the landing that cannot / be avoided, into / the arms / of people who love him . . . " (p. 111) He settles into a routine, lives his life as if there is nothing new, but ends at "An Ending, Unfinished" (p. 126), back at Sloan Kettering. "Where now? He asked himself . . . " What next?
This is a rich and diverse anthology of poetry and of prose extracts, both fictional and non-fictional, about becoming a parent. It is organized into three chronological sections: "First Stirrings," about becoming and being pregnant (or of having a pregnant partner: the father’s perspective is refreshingly well-represented throughout), "The Welcoming," about labor and birth, and bringing home the newborn, and "Now That I am Forever With Child," about being the parent of an infant.
Each section contains a cross-section of views, from, for instance, Elizabeth Spires’s languid letter to the fetus inside her to Rosemary Bray’s candid account of her ambivalence about being pregnant; from Julianna Baggott’s thoughts on the Madonna and child, and A. S. (Antonia Susan) Byatt ’s rather frightening description of giving birth in a British hospital in the 1960s, to Hunt Hawkins’s sad poem about holding his dying newborn daughter; and from Jesse Green’s memoir as a gay parent adopting a son to Kate Daniels’s prayer for her children.
The anthology ends with the powerful poem by Audre Lorde that gives its title to the book’s last section. Lorde encapsulates the astonishing change of focus and identity at the heart of becoming a parent.
This collection of 36 poems, some of which have been published individually in various literary magazines, is primarily about dead--or nearly dead--family members: a brother and sister lost to cancer; the speaker's palsied, nearly blind father dying of Parkinson's disease; his mother's struggle with chronic arthritis and heart disease.
The collection is divided into three untitled sections. The first deals primarily with the aging and death of the speaker's parents; the second with a wider range of abandonment and death, lost loves, dreams, innocence; the third almost exclusively with his sister's six year struggle with breast cancer and dying.
One 1970s summer, Madeleine L'Engle brings her mother to Crosswicks, the rambling country house where the extended family has spent extended vacations for many years. At ninety, the elder Madeleine is suffering from the ravages of the now vanished diagnosis, 'hardening of the arteries.' By times she is frightened, angry, or difficult; at night she cries out or tries to wander. Round-the-clock caregivers help with the strain, while the writer's own children and grandchildren figure in her journal with concern, affection, and wonder.
The presence of the dwindling old lady provokes detailed recollections--direct and indirect memories--of the lives of her mother, grandmother, and great-grandmother, all named Madeleine--bringing the span of this narrative to six generations. Despite the grandmother's slow mental decline, death comes suddenly, while L'Engle is away and her son is left to help.
At the heart of this novel is a simple love story. Dr. Bruno Sachs, a slight, stooped, and somewhat unkempt general practitioner in a French village is dedicated to his work and loved by his patients. Sachs is a solitary, self-effacing man who takes his Hippocratic duties seriously and is especially sensitive to the needs of his patients.
In addition to his private practice, Sachs works part-time at an abortion clinic, where he performs an abortion on a distraught young woman named Pauline Kasser. Soon the doctor and his patient fall in love. She moves in with him and becomes pregnant. An editor by profession, Pauline also encourages and assists Dr. Sachs in completing the book he is writing.
The story has many additional layers and dimensions. The reader views Sachs through the eyes of multiple narrators--his patients, colleagues, friends and acquaintances, all of whom write in the first person and present Bruno Sachs as "you" or "he." Thus, the reader gradually builds up a "connection" (empathy) with Sachs by synthesizing multiple glimpses of his behavior and facets of his character. At the same time, Sachs is trying to find his own voice, his own connection, by becoming a writer. At first he jots down random thoughts, then he keeps a notebook, and eventually he produces a complete manuscript.
The book has innovative structural elements that introduce other layers of meaning. For example, the 112 short chapters are organized into seven sections, corresponding with the components of a complete clinical case history: presentation (as in "chief complaint"), history, clinical examination, further investigations, diagnosis, treatment, and prognosis. Similarly, the narratives delve progressively into Sachs' "illness" and follow the "patient" through his course of "treatment."
Another structural element is the cycle of fertility and gestation. The story takes place from September through June, precisely 40 weeks, a pregnancy of nine months, during which Sachs is re-born.
Summary:A patient expresses his anger and frustration with the physicians who are treating him. A recovering alcoholic, he feels particularly sensitive to what he perceives as the doctors' self-righteousness, and imagines how he would get even with them.