Showing 111 - 120 of 286 annotations tagged with the keyword "Illness Narrative/Pathography"
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:Endpoint is an extraordinary sequence of seventeen poems John Updike wrote near the end of his life. Beginning on his birthday in March, 2002, he wrote a poem every birthday for the next 6 years. Then after his 2008 birthday he wrote several more poems, mostly focusing on his dying from lung cancer. The last poem, "Fine Point," was dated 12/22/08. He died in January, 2009. The poems also include memories of his mother writing and cranking out manuscripts, but never getting published; of childhood friends who became models for characters in his novels; of getting lost in a department store as a three-year-old; of Jack Benny and FDR, Mickey Mouse and Barney Google, as well as five wars. The memories are both personal and international in scope. His attitude toward them varies from distress to appreciation and gratitude.
Frank argues that the modernist conception of illness is a form of "colonization" in that the ill person hands over his or her body (and life narrative) to biomedical expertise. In a post-modern conception, however, the ill person reclaims the authority and ability to tell his or her own story, and to construct a new life narrative from the "narrative wreckage" of serious illness or injury.
Frank identifies four dimensions by which one's relationship to the body may be understood: control versus contingency, self-versus other-relatedness, dissociation versus association with the body, and desire versus lack of desire. Frank presents a diagram (p. 30) in which he sketches four "ideal typical bodies" that arise from various combinations of control-contingency, etc. These include (a) the disciplined body, (b) the mirroring body, (c) the dominating body, and (d) the communicative body. While the first three lead to problems in constructing a satisfactory illness narrative, the last is an "idealized type" in that it is not only descriptive, but also "provides an ethical ideal for bodies." (p.48)
Frank then categorizes patients' illness narratives into three main themes: (a) restitution narratives, in which the plot involves returning to one's previous state of health; (b) chaos narratives, in which all life events are contingent and no one is in control; and (c) quest narratives, in which illness is seen as a spiritual journey. This understanding serves as a starting point for a narrative ethic of illness.
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)
Dr. Thomas Graboys is an eminent Boston cardiologist who developed Parkinson's disease in his late 50s. Shortly after his wife died in 1998, Graboys noticed unusual fatigue and mental sluggishness. He attributed these symptoms to grief, but they continued and he later experienced episodes of stumbling, falling, and syncope. During 2003 Graboys confided to his diary that it was "increasingly difficult to express concepts." ( p. 30) He also noticed tremor, problems with dictation, and frequent loss of his train of thought, symptoms "typical of Parkinson's." (p. 24)
While Graboys recorded these concerns in his diary, outwardly he denied that anything was wrong, even to family and close friends. In fact, his denial continued until the day in 2003 when a neurologist friend accosted him in the parking lot and pointedly asked, "Tom, who is taking care of your Parkinson's?" (p. 27) Dr. Graboys faced an even more difficult challenge in 2004 when he developed the vivid, violent dreams and memory lapses that led to a diagnosis of Lewy body dementia, a form of progressive dementia sometimes associated with Parkinson's disease. With the cat out of the bag at last, the author finally began to confront the issue of professional impairment. In mid-2005 Graboys's colleagues seized the initiative and told him that "it was the unanimous opinion of my colleagues that I was no longer fit to practice medicine." (p. 36)
Writing now with the assistance of journalist Peter Zheutlin, Graboys reviews these events with unblinking honesty. He confronts his anger and denial, but also reveals the thoughtful, generous and passionate side of his character. "What will become of me?' This is the question that now lies at the center of Dr. Graboys' personal world. He knows that his loss of mental and physical control will worsen. With almost superhuman effort and his family's strong support, the author has been able to adapt to his limitations and maintain a sense of meaning in his life. Will that continue? In a chapter entitled "End Game," he addresses the question of suicide. Reflecting on his condition, especially the dementia, Graboys asks, "Will I lose myself, my very essence, to this disease?" (p. 161)
In the last chapter, Graboys acknowledges that he has no "simple prescription that will help you or someone you love live a life beyond illness, or tell you how to tap the hope that lives within." (p. 181) However, he then goes on to make several suggestions of the advice-manual variety: "Use your family and friends as motivation to live life with as much grace as you can muster." "Find a safe place... to unburden yourself of anger." "Acceptance is key to defusing anger, stress, and self-pity." "Use your faith in God, if you believe in God." (pp. 181-182)
A thirty-five year old English professor (and brilliant writer) diagnosed with ALS (Amyotrophic lateral sclerosis, Lou Gehrig’s disease) is told he has less than five years to live. Nine years later he publishes a series of 12 personal essays that chronicle his remarkable journey from diagnosis ("Getting Up in the Morning") to being mindful, "cultivating the eternal present" ("Living at the Edge"). He shares with us the interim of conundrums, spirituality, and the quotidian by reflecting on his New Hampshire life: Unfinished Houses, Wild Things, Mud Season, Winter Mind.
In almost every essay Simmons reflects on the rewards of "mystical seeing". We all have "within us this capacity for wonder, this ability to break the bonds of ordinary awareness and sense that though our lives are fleeting and transitory, we are part of something larger, eternal and unchanging." (p. 152) "Most of us have found that a line of poetry or scripture, a passage of music, the turning of a leaf in sunlight, or the sight of a child splashing in a stream can suddenly become a doorway through which, as William James writes, ’the mystery of fact, the wildness and the pang of life, steals into our hearts and thrills them.’" (p. 101)
Aging, Jewish-Canadian gum-shoe, Benny Cooperman, awakes in hospital from a coma to discover that he has forgotten many things about himself and his recent past. He has also lost the ability to read, although he still can write: alexia sine agraphia. The therapists give him a memory book as an aide to functional recovery; he must record vital information for later deciphering. He learns that he was found unconscious in a dumpster with a blow to the head; beside him lay the corpse of a woman professor.
Leaving the hospital only once (without permission), Cooperman uses dogged determination and ingenuity to unravel the complex academic homicide. Adapting to his own disability proves just as demanding to Cooperman as solving the murder. Without giving away the ending, this "whodunit" involves premonitory dreams, pretty students, rogue professors, a crusty underworld, and drugs. Engel's trademark light touch and vignettes of Toronto and its University colleges and hospitals add humor and credibility to the vivid yarn.
In dire financial straits, the physician-researcher, Dr. Malcolm Sayres (Robin Williams), accepts a clinical job for which he is decidedly unsuited: staff physician in a chronic-care hospital. His charges include the severely damaged, rigid, and inarticulate victims of an epidemic of encephalitis lethargica. Sayres makes a connection between their symptoms and Parkinson’s disease. With the hard-won blessing of his skeptical supervisor, he conducts a therapeutic trial using the new anti-Parkinson drug, L-Dopa.
The first patient to "awaken" is Leonard Lowe (Robert De Niro) who, despite being "away" for many years, proves to be a natural leader, with a philosophical mind of his own. Other patients soon display marked improvement and their stories are told in an aura of fund-raising celebration marked by happy excursions.
Gradually, however, problems develop: patients have trouble adapting to the radical changes in themselves and the world; Leonard grows angry with the imperfection of his rehabilitation; the horrifying side effects of L-Dopa appear; and Leonard’s mother (Ruth Nelson), initially happy for her son’s recovery, is later alienated by the concomitant arousal of his individuality, sexuality, and independence. The film ends with "closure of the therapeutic window" and marked regression in some patients, but not before they have awakened clinical commitment and a new ability to express feelings in their shy doctor.
A series of approximately 175 short fictional monologues or "postcards," each less than a page, in the voice of an alcoholic--the view from "the bottle"--describing the obsession, rationalization, pain, dissolution, and toll that alcoholism takes on career, body, friends and family. Each "postcard" is written in a different voice: sometimes old, sometimes young; male or female; reformed or not. In few words, they capture intense moments that vividly evoke the misery and folly in the rest of alcoholic existence. There is humour and despair.
This anthology of 38 autobiographical works by women with HIV/AIDS is edited by two women who are HIV positive. The introduction summarizes how the editors solicited writing or other expressions from HIV-positive women in order to publicly recognize the stories of women living with HIV/AIDS. Although most of the works are from Canada and the USA (including some from native populations), 12 other countries are also represented, including many African and European countries. Most of the pieces are prose, but poetry, art and photography are also included.
The pieces are very diverse and reflect multiple perspectives: activist, feminist, mother, teenager, drug addict, prostitute, lesbian, heterosexual, victim of abuse, etc. The stories are personal, introspective, direct and specific. Yet, throughout the anthology, universal themes of loneliness, isolation, hope, love and love lost recur.