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Editor Helman is a physician and anthropologist as well as a published author of short stories, essays, and a medical anthropology textbook. For this anthology he has selected short stories, case studies, memoir and novel excerpts whose purpose is "to illustrate different aspects of [the] singular but universal relationship" between doctors and patients (1). In the introduction he discusses how these selections illustrate storytelling in medicine; the unique experience of individual illness; differences between fast-paced contemporary technological specialized medicine, and an older more leisurely medicine where the physician employed all his/her senses to diagnose illness, doctors made house calls, and patients recovered over time, or died.
The anthology is subdivided into three parts: "Doctors," represented by the work of Mikhail Bulgakov, Franz Kafka, Sir Arthur Conan Doyle, and Rachel Naomi Remen; "Patients," represented by authors Renate Rubenstein, Ruth Picardie, Rachel Clark, Clive Sinclair, W. (William) Somerset Maugham, and O. Henry; and "Clinical Encounters," with work by Oliver Sacks, Cecil Helman, William Carlos Williams, A. J. (Archibald Joseph) Cronin, Anton P.Chekhov, and Moacyr Scliar. (In total there are 16 selections.) Each piece is preceded by a paragraph of biographical information about its author and an introduction to the text.
Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.
The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.
But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "
Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.
During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."
Summary:The border of this short poem refers to the boundary separating the narrator both from those who are well, and from her own self before she became ill with a painful chronic disease. She is an "exile" who must tell stories about what life was like in another country (good health) in a perhaps idealized past.
This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.
Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.
The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.
These arresting and beautiful drawings of a woman's body through which the interior skeleton is visible represent the art and body of Laura Ferguson, a visual artist who has severe scoliosis. At age 13 Ferguson underwent spinal fusion surgery, followed by one year spent wearing a plaster cast. Years later she began to experience pain and disability due to her condition. This was the impetus to try to understand her body, to visualize its skeleton, to undertake "an artistic inquiry" into the medical condition of scoliosis.
She learned anatomy and the physiology of motion, learned to read her own x-rays and was helped to visualize her skeleton by orthopedists and radiologists, working most recently with radiologists at New York University School of Medicine who provided a 3D spiral CT scan. In Ferguson's words, the latter is "an exciting new technology that allows me to view my skeleton from any angle, rotating and tilting it to match whatever movement or pose I'm interested in drawing." (Perspectives in Biology and Medicine, Spring 2004, vol. 47, no. 2, p. 166)
Ferguson originated her own technique of "floating colors" to produce the layered background (on paper) of these drawings. On top of the complex colored background that constitutes the body's flesh in her work, she uses drawing materials to represent the interior skeleton, allowing the viewer to see both the body and its skeletal interior--but the interior has been exteriorized. Ferguson depicts a body in motion--bending, kneeling, reclining, stretching, twisting--as well as a sensual body--nude, with breasts and long hair; embracing, being embraced. Some of the depictions do not have a skeletal interior at all while some are almost straight anatomical drawings of skeleton parts.
Contrary to what the title might suggest, this is not a memoir of drug addiction. Writer and poet Tom Andrews has hemophilia, and codeine is the analgesic he requires during excruciatingly painful internal bleeding episodes. In this diary, begun while recovering from a leg injury, Andrews reflects on his particular experience of life and hemophilia. He makes clear that " . . . hemophilia is only one of the stories my life tells me . . . " (p. 29)
The memoir interweaves the author's physical, emotional, and existential journey through the convalescent period with flashbacks of childhood and his relationship with his ailing brother, now dead, to whose memory the book is dedicated. Brother John's fatal illness with kidney disease shaped--and continues to shape--Tom's life as much as did the hemophilia.
On the one hand their parents' concern for John took Tom out of the spotlight and allowed him to pursue his own interests. These extended to motorcycle racing, playing in a punk band, and setting a record for continuous hand clapping--at age 11--that was recorded in the Guinness Book of World Records. On the other hand, Tom's guilt over surviving John's early death may account for an almost reckless disregard of his own precarious physical condition. A constant subtext is the deep grief and abiding love of the living brother for the dead one.
But this is not a mournful book. It is an engaging memoir that provides unusual access and insight into the world of hemophilia, especially with regard to the painful "bleeds." It is the sense of exile and separation from others that is most disturbing for Andrews when in the throes of unrelieved pain. He takes us through the mental concentration required to endure this pain and the liberating relief to mind and spirit provided by codeine. Memory, perception, and writing provide the additional resources he needs to re-connect with the world.
Summary:A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal. She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset. The center of her upper body is vertically torn open from neck to pubic region to reveal an Ionic column that is split horizontally in numerous places. The column pushes up against the figure's chin. The expression on the woman's face is serious, stoic. Tears trickle from her eyes and carpenter nails penetrate the skin of her face and the rest of her exposed body, as well as the sheet. Her long dark hair hangs loosely behind her head, her left ear exposed. Behind the woman stretches a fractured greenish-brown earth, reaching to a strip of sea, which meets the dark blue sky.
A little girl is brought to the rural hospital by her mother, who throws himself at the feet of the young doctor, “Please do something to save my daughter!” It seems that she has been suffering from a sore throat and is now having difficulty breathing. The doctor looks into her throat; diphtheria is evident.
At first he scolds the mother for not having brought the girl earlier. Then he suggests surgery: a tracheotomy. The doctor knows this is the only way he might save the child, but he is consumed by anxiety because he has never performed the procedure. At first the mother objects to surgery, but then relents. The tracheotomy is successful and the child survives.
This anthology culls 1,500 excerpts from approximately 600 works of literature primarily written in the past two centuries and representing all major genres--the novel, drama, poetry, and essay. These brief selections highlight how literature portrays the medical profession and also provide ample evidence of many recurrent themes about the doctor-patient relationship and the personal lives of physicians present in the pages of fiction.
The book is organized into eleven chapters devoted to the following subjects: the doctor's fee, time, bedside manner, the medical history and physical examination, communication and truth, treatment, detachment, resentment of the medical profession, hospital rounds, social status, and the doctor in court. Many well-known authors including Anton P. Chekhov, Sir Arthur Conan Doyle, Ernest Hemingway, Thomas Mann, W. (William) Somerset Maugham, Leo Tolstoy, Tennessee Williams, and William Carlos Williams are featured in this anthology but less notable writers are also introduced. A twenty-three-page bibliography of primary and secondary sources is a useful element of the book.
The French writer Alphonse Daudet (1840-1897) developed the form of tertiary syphilis called tabes dorsalis in the early 1880’s. Tabes progressively destroys the structures of the dorsal column of the spinal cord, leading at first to lower extremity ataxia and neuropathic pain, and eventually to paralysis of the legs associated with intractable pain. Daudet sought treatment from the leading neurologists of his time, including J. M. Charcot and C. E. Brown-Séquard, but the disease progressed relentlessly.
At some point Daudet began making notes for a book about his illness. He spoke to several of his contemporaries about this project, but the book never became more than a collection of brief notes, which were collected and published posthumously as "La Doulou" (Provencal for "pain"). This short book, translated here by Julian Barnes, consists of "fifty or so pages of notes on his symptoms and sufferings, his fears and reflections, and on the strange social life of patients at shower-bath and spa." (p. xiii)
The notes are generally in chronological order, beginning with short comments like "Torture walking back from the baths via the Champs-Elysées" (p. 4) and "Also from that time onwards pins and needles in the feet, burning feelings, hypersensitivity." (p. 6) In a long section toward the end Daudet comments on his experience at Lamalou, a thermal spa that he visited annually from 1885 to 1893. "I’ve passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek." (p. 65)