Showing 201 - 210 of 273 annotations tagged with the keyword "Illness Narrative/Pathography"
Summary:This story of one exceptionally accomplished family's discovery of their past and future relationships with Huntington's Disease (HD) is also the story of how the Wexler family changed the cultural narrative of HD for other families at risk for this genetically-transmitted and currently incurable disease. The HD diagnosis of Leonore Wexler (the author's mother) inspires Milton Wexler, a psychologist, to create a major foundation for HD research, which develops critical mass and influence as Leonore Wexler's condition deteriorates, and after her death. The book interweaves the story of the Wexlers' emotional and other negotiations with HD and the story of their efforts to create an HD community comprised of those with active symptoms of HD, family members, advocates, and researchers.
Patrimony relates the final illness and death of Philip Roth's father, Herman Roth. It begins as a misdiagnosis of Bell's palsy, which is eventually diagnosed as a brain tumor. Further tests reveal that it is cancer, operable only with great effort and little promise of cure or even significant palliation. The family (including Herman) decides against surgery and remains in close contact with him until his death.
Roth recounts his father's increasing weakness and helplessness, his own emergency quintuple bypass surgery, and his dreams of his father speaking to him from beyond the grave. Writing this book, he concludes, is the natural and necessary process in bearing witness to his father's life and death.
This book, a sequel to It's Not About the Bike: My Journey Back to Life, chronicles five-time Tour de France winner Lance Armstrong's personal and professional triumphs and agonies from late 1999 (after he won his first Tour and after the birth of his son Luke) to mid-2003, the 100th anniversary of the Tour. Armstrong defines himself by his cancer experience and survival; he devotes himself to both one-on-one connections with fellow cancer patients as well as his public persona to raise awareness and funds for cancer programs and survivors' needs.
There are many medically related themes in the book. Descriptions of cycling sports injuries and illnesses include a severe concussion, a broken cervical vertebra, dehydration, road rash, tendonitis and exhaustion. Armstrong experiences the loss of friends and acquaintances to cancer and trauma. He is the subject of an intense investigation into the possible use of recombinant erythropoietin and finally cleared of suspicion after nearly two years. As a world class athlete, he is subject to frequent, random drug testing.
His wife experiences a failed in vitro fertilization cycle, though a subsequent successful treatment leads to the birth of healthy twin girls. The Red Cross invites Armstrong to visit NYC firefighters soon after the devastation of September 11, 2001 in a successful effort to boost morale. Armstrong, though, describes encounters with some cancer patients in which he felt he did not succeed in providing the desired inspiration.
Despite reaching his five-year cancer-free milestone, Armstrong, like many other cancer survivors, wonders if the cancer will return. He is hyper-vigilant of his body not only because of his elite athlete status, but also because of his cancer history. Nonetheless, he is reckless and jumps from a steep cliff to sense the rush of fear and freedom.
Armstrong trusts and believes in modern medicine and technology, as well as the physicians, nurses and other health care practitioners dedicated to cancer treatments and health care. He also lauds complementary practices, particularly the team chiropractor who uses a variety of techniques to support the riders during the grueling Tour.
When Dan Shapiro was 20 years old and a junior in college, he was diagnosed with "nodular sclerosing Hodgkin's disease." Thus began a five-year ordeal of chemotherapy, radiation treatments, and a bone marrow transplant that failed. But this memoir, which recounts diagnosis, treatment, and two relapses, is more than a narrative of illness. Woven in and out of the subjective experience of physical and emotional trauma is the author's life as an adolescent, a family member, a young man who falls in love with the woman who eventually becomes his wife, a graduate student learning to be a clinical psychologist.
Sequences of ordinary life are carefully juxtaposed with sections on illness and treatment, emphasizing the author's determination to incorporate his illness into his life, all part of one continuous fabric. Even though disease was enormously disruptive, "[l]ife doesn't stop when something horrible happens" (158). Part of that life was a mother who decided to grow marijuana plants in her backyard ("Mom's Marijuana") so that her son would have an antidote for the terrible nausea that accompanied his chemotherapy. It is Mom who learns in a waiting room conversation that it might be advisable for Dan to bank his sperm for the future-- and who then proceeds to make the arrangements. As the memoir ends, Dan's mother finally disposes of the dry marijuana leaves that have been hanging in her attic for several years.
In this documentary film about euthanasia in the Netherlands, a man--Kees van Wendel de Joode--with amyotrophic lateral sclerosis (ALS, Lou Gehrig's disease) requests death in his home, to be performed by his doctor, Wilfred Sidney van Oijen. The film mostly consists of what appear to be unscripted discussions between Kees, his wife Antoinette, and the doctor; however, there are also interviews with the doctor and views of the doctor seeing other patients. The film shows the doctor performing euthanasia: we watch him inject a barbiturate and then a muscle relaxant and we see him supporting Antoinette during the bedside deathwatch.
Kees has had a rapid deterioration of his ability to function: he is unable to move his legs and right arm, he can no longer speak coherently, and he is having difficulty swallowing. His wife cares for him in their Amsterdam apartment. The film documents the legal requirements for euthanasia in the Netherlands: Kees's repeated requests for euthanasia, confirmation that he has an incurable disease, the second opinion doctor's visit, and reporting the death to the municipal coroner and public prosecutor.
The film's strength lies in the sensitive treatment of the impact of this request on the patient, his wife, and especially on his doctor. Dr. van Oijen is an introspective man who cares for his patients--he makes house calls, explains medical terms to his patients, touches his patients, and asks what they are concerned about. He allows his patients (Antoinette is, in many ways, his patient too) to weep and be emotional.
The religious and moral dimensions of euthanasia are explored mostly with the doctor, who does not view himself as a wanton killer, but rather a doctor whose duty includes the alleviation of suffering. The film concludes with a voice-over stating the doctor will not sleep this night, but still has a clinic full of patients awaiting him in the morning.
In this tightly organized study of the relationship between creativity and manic-depressive disease and its variants, the author asks and attempts to address some interesting questions. Is there sufficient evidence in the histories of well-known artists and their families to demonstrate a genetic linking of creativity and depressive disorders? Are there phases in classic bipolar cycles that are particularly conducive to bursts of, or sustained, creative productivity? Does treatment (be it chemical or psychotherapeutic) of his or her psychiatric symptoms blunt the ability of the artist to work successfully?
In an attempt to answer these and other intriguing questions, Jamison explores in some detail the personal, family and creative histories of writers long suspected of being depressed with or without alcohol or having periods of mania. She opens by defining for the novice the parameters of the disorders in question, examines some of her subjects' family history of "madness," and discusses evidence for relationships among the waxing and waning of depressive disorders and creative productivity.
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)
In this novel the narrator travels by train from the present into the past and back again. The narrator boards a train in Soviet Moscow; travels to Leningrad in a compartment with some not too friendly people; stays overnight in a relative's run-down, crowded apartment; and rambles through the streets of Leningrad, stopping to visit Dostoyevsky's last place of residence, which is now a museum.
However, this framing story occupies very little of the book. During the train ride, the narrator re-imagines a much earlier trip in April 1867, as Fyodor Dostoyevsky and his young wife, Anna Grigoryevna, travel by train to Baden-Baden in Germany. They will remain abroad for four years, as Dostoyevsky indulges in his passion (and later obsession) for gambling.
In Baden-Baden he loses all their money; he pawns their belongings and loses; he begs and borrows money from friends and publishers, and loses. Each time he loses, he comes home to their rented apartment and throws himself at Anna's feet. He protests his love, berates himself, and promises to do better in the future; and Anna forgives him.
In this dream-like story, repentance and forgiveness, memory and desire, hope and despair revolve like electrons around Dostoevsky's addiction to gambling. Fyodor and Anna recall earlier events in their lives; for example, Anna remembers herself as a hesitant young secretary arriving for the first time to take dictation from the famous man; and Fyodor, the former convict, Slavophile author of Crime and Punishment, remembers being scornfully dismissed by the smooth and sophisticated Turgenev.
Within the 1867 framework, the story seems to be stuck, unable to move forward, although we know from our late 20th century perspective--as Tsypkin recalls (and invents) the events while on his train trip to Leningrad--they are part of a larger story which moves inexorably forward through time and ends at the Dostoevsky house in Leningrad (St. Petersburg), with the moving scene of Fyodor's last days. And the two stories converge as Tsypkin visits the Dostoevsky museum where those last days took place.