Showing 71 - 80 of 252 annotations tagged with the keyword "Father-Daughter Relationship"
Summary:This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.
Summary:Knapp describes how she gradually became an alcoholic, drinking more and more, until she couldn't live without alcohol. She found drinking to be the most important relationship in her life; she loved how it made her feel, how it coped with her fears and worries. When family and friends spoke to her about her drinking, she made promises to them she couldn't keep. Finally one time while drunk she was carrying two children accross the street when she fell. She could have killed them. Three months later she checked into rehab and gave up drinking. She used the support of Alcoholics Anonymous to help her stay sober and to gradually learn how to love people, instead of alcohol. Her need for protection and for escape, which alcohol gave her, had to be replaced with an honest facing of problems and with social skills. This memoir also describes her struggling with anorexia.
Summary:Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation. Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another. Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive. Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins. Instead, the line between the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.
The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.
The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.
Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.
Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.
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)
The aged, black nurse, Eunice Evers (Alfre Woodward), testifies before the 1973 Senate hearings into the Tuskegee study. Through a series of lengthy flashbacks, her testimony evokes the 1932 origin and four-decade course of a research experiment to study but not treat syphilis in the black men of Macon County, Alabama. The federally funded project began with the intent to treat the men, but when funds dried up, the project coordinators decided simply to document the course of the disease to discover if blacks responded to syphilis as did whites.
The nurse was deeply attached to the patients and they, to her; a Dixie band named itself "Miss Evers' Boys." Evers and her doctor supervisor (Joe Morton) hoped that treatment would be restored after a few months, but ten years pass. With the advent of penicillin in 1942, her intelligent lover Caleb (Laurence Fishburne) rebelled, took penicillin, and enlisted in the army; the project, however, continues.
Evers is disbelieving when she realizes that the men will not be treated, but she cannot abandon them. Against the advice of her father, she refuses to leave Alabama with Caleb and continues to participate in the lie that encourages the Tuskegee men to remain untreated into the late 1960s. One by one Miss Evers' Boys die or are disabled by the disease.
The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.
Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."
TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.
The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.
Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.
The story opens two years into the writer's undiagnosed hematological disorder, focusing the narrative on the two most significant issues in this young woman's life--her first experience with a love relationship that is to result in a long-term commitment, and the disease that for years is to affect the way she lives her day-to-day life. Breslin describes in considerable detail her encounters with hospitals and health care professionals, none of whom are able to diagnosis nor prognosticate but continue to treat each new symptom as it arises.
In the midst of this uncertainty which pervades the memoir, are the subtexts of the love between the author and her husband and the relationship she maintains with her father. The reader, presumably like the author herself, never learns the name of the mysterious illness that informs the tale.
Summary:A memoir of raising a daughter with autism and an anthropological and historical investigation into autism around the world, Unstrange Minds: Remapping the World of Autism draws upon Grinker's own experiences, those of families of children with autism in the United States, Korea, India and South Africa, and a variety of experts and caregivers. Putting the story of autism into a historical, anthropological, and personal context, the book deals with hot-button topics - the question of an autism epidemic, of etiology, of treatments - with a careful, patient approach.
Summary:This collection of stories offers a sidelong view of medicine from the perspective of a thoughtful, experienced doctor of internal medicine at a teaching institution (UCSF) in an urban setting that brings a wide variety of types of patients to his door. In a context of evident respect and admiration for even the quirkiest of them, Watts admits to the kinds of personal responses most have been trained to hide-laughter, anger, bewilderment, frustration, empathetic sorrow. The cases he recounts include several whose inexplicabilities ultimately require action based as much on intuition as on science. He includes several stories of illness among his own family and friends, and makes it clear in others how his professional decisions affect his home life and his own state of mind.