Showing 201 - 210 of 515 annotations tagged with the keyword "Disability"

Silvie's Life

Rogoff, Marianne

Last Updated: Apr-01-2008
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This book chronicles a tortured parenthood during the birth and brief life of a severely brain-damaged female infant, Silvie. Doctors predict that the child will live only a few days but instead she survives for seven months. The story is told in first person by the mother, beginning with her arduous labor during a home delivery in the presence of an experienced midwife and the family physician. The baby does not cry when she is born and turns blue even with oxygen that the doctor administers. An ambulance is summoned; "a bigger, better oxygen machine" restores the baby's color and she is brought to a hospital neonatal intensive care unit where she is artificially ventilated and fed.

In the hospital Silvie "fails" all the tests of normalcy. The doctors recommend removing artificial ventilation. "I feared, even more than I feared her death I think (and harder to admit), that they would remove the oxygen pump and the baby would live on and on and never be able to do anything at all" (14). Yet when the child does in fact breathe independently, "I took the fact that she could sustain her own breathing to mean that the baby wanted to live. It was all right to love her" (15). A few days later, however, the medical team concludes that there is nothing further they can do for the baby, that the parents should take the child home, where she will likely die within a couple of days. Upon being prodded, one physician suggests the parents give her an overdose of phenobarbital, which she is receiving for continual epileptic seizures.

At home, the parents feed Silvie by tube, medicate her, change her diapers, hold her, and learn from a friend how to swaddle her. The child never cries, does not focus her eyes on anything, rarely responds to sound or touch, and gains no weight. Whatever random responsiveness there seems to be gives the author a sense of motherhood: "I was able to survive because of my faith in these intermittent chance meetings, believing that Silvie did know when I was here and that I was holding her close in a way that meant love" (37). The parents brace themselves for Silvie's death. The husband's sister visits and councils them to actively put an end to Silvie's life, which they refuse to do. But they do not plan to take extra measures (CPR) if Silvie seems to be dying at home and when they articulate this to a social worker whom they consult to obtain respite care, it becomes clear that she would report them to Child Protective Services.

The husband quits his job as a residential counselor of emotionally disturbed teenagers to do part-time carpentry work -- he is too preoccupied to care about other people's problems. When a friend accidentally breaks the phenobarbital bottle, the parents together with the family physician decide to see how Silvie will get along without the drug. To their amazement, the baby appears slightly more alert and is able to suck from a bottle -- no more feeding tube required. But the husband reminds his wife, "The doctors warned us she might do this. This is the one and only thing she can ever learn. They said when this happened to other parents they started to believe that the baby was getting better" (59).

The parents live in limbo, attempt to live a "normal" life. When Silvie starts to lose weight at age 4 months, the doctor advises to resume tube feeding; they don't see the point, but when hospital physicians use the word, "murder," and threaten to "take over" Silvie's care, the parents relent. The baby lives but "it was the sameness of Silvie that drove you crazy . . . She slept and woke, but was awake that much different? She did not change, she did not change. Her sameness was a stone I wore, an emblem of failure, failed life" (96).

The final act for Silvie begins when the author's mother-in-law is dying of cancer in New York and a decision is made to leave the baby at home in California for several days in the care of a retired nurse. The nurse has been shown how to do the tube feeding, but while the parents are in New York she experiments with spoon feeding, then discontinues tube feeding for three days before the parents return. The parents see that Silvie has deteriorated in their absence and resume tube feeding. For the remaining couple of months the parents wait, investigate institutionalizing Silvie, and finally determine that "the way we loved Silvie meant we loved her enough to let her die" at home, with "a certain amount of fluid and nourishment for comfort, but a gradual withdrawal of excessive food. Replaced with a lot of touching and holding, stroking and whispering" (122). Silvie dies and the author is four months pregnant with the baby she and her husband have decided not to abort.

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The Memory Keeper's Daughter

Edwards, Kim

Last Updated: Mar-27-2008
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Because he can't reach the hospital in a winter snowstorm, Dr. David Henry ends up assisting his own wife in the birth of their twin children at his clinic with the help of his nurse, Caroline. The boy is fine; the girl has Down symdrome. While his wife is as yet unaware, he gives the girl baby to Caroline to take to an institution. Norah, his wife, remains unaware that she give birth to two children, yet is haunted by some sense of loss she can't name. Caroline, unable to leave the baby in an unappealing institutional setting, makes a snap decision to keep her. She leaves town, renewing communication later with the baby's father, and raises her as a single mother until she meets a man who is willing to marry her and love Phoebe as a daughter.

Only after Dr. Henry dies suddenly does his wife discover the existence of her daughter, through photographs sent to him over the years by Caroline, and then a visit from Caroline and Phoebe. Sadly, but with a will to choose life on strange and demanding terms, Norah and her son, Phoebe's brother, choose to enlarge their circle of family to include a loving relationship with Phoebe, clearly her own person, and the woman and man who have cared for her.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author's mission is to investigate, understand, explain, describe, and puzzle over the nature of phobias -- his own, and that of other sufferers. Allen Shawn is a composer, pianist, and teacher, and is a member of a gifted family: his brother, Wallace Shawn, is a playwright and actor; his father was William Shawn, for many years editor of the New Yorker Magazine. As a musician and academic, Allen Shawn is "successful." And yet, his life is severely limited by agoraphobia, "a restriction of activities brought about by a fear of having panic symptoms in situations in which one is far from help or escape is perceived to be difficult" (13). The author interweaves sections that summarize his extensive readings on the fight-flight reaction, evolution, brain and mind, Freud's theories on phobia--with his personal history, especially as he believes it relates to his phobia.

Shawn's descriptions of how he experiences agoraphobia are vivid and informative, detailing the situations that trigger his physiologic symptoms of panic and disconnectedness: driving on unfamiliar roads, any kind of travel that is unfamiliar, walking across or on the edge of open spaces, traveling across long bridges, being in enclosed spaces (claustrophobia). The agoraphobe, he writes, "feels at risk, as if at risk of sudden death or madness" (14). Shawn tells about what he must do in order to strike out on unfamiliar trips, that is, when he gathers up the courage to take them. He must venture up to the point where panic sets in, turn back, then on another occasion repeat the process but attempt to go further, pushing through the panic, until, one day, he can make the entire journey without turning back. Sometimes he never makes it to the desired goal.

The author points to several different factors that seem to predispose people to phobias: heredity, unconscious imitation of a phobic parent, upbringing. In his own case, in retrospect, his father showed symptoms of agoraphobia. Shawn discusses the underlying repression that was pervasive in his household -- his father carried on a long-term relationship with a woman while remaining married. Shawn's mother knew about the relationship from early on but any discussion of it was forbidden, even after it became common knowledge.

Perhaps more important in Allen Shawn's perception of repression is what happened to his twin sister, Mary, who was born with what is now considered to be autism, and mental retardation. Allen felt close to this girl, even though her behavior was unpredictable and baffling. When he was about eight years old, his parents sent her away to a special boarding school without warning Allen, or offering explanations. From then on he rarely saw her; 10 years later she was institutionalized. The family did not speak much about her and her "'exile' . . . added yet another layer of mystification to an already really mystifying atmosphere. It turned out that even in our temperate environment something extremely violent could occur" (177). Not long after that, Allen began to experience severe anxiety in certain situations.

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The Crazy Man

Porter, Pamela

Last Updated: Mar-15-2008
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Twelve year -old Emaline is riding with her father as he discs their fields, when she sees her beloved dog Prince running dangerously close to the blades. In trying to stop him, she falls off the tractor and her leg is sliced almost completely through. In anger, her father shoots Prince and leaves home. She is rushed to hospital where a series of operations and treatments save her limb, although it is permanently shortened and she walks with a limp.

The fields need seeding. In desperation Emmy’s mother appeals to the local “mental hospital,” and Angus, the crazy man, arrives to help. Emmy is warned to stay clear of him, and neighbours gawk, but she begins to notice his special qualities. He quietly sows the fields with blue flax and yellow mustard rather than the unsellable wheat. He helps fit her with a built up shoe, and he is steadfast though frightened when falsely accused of theft. Yet some neighbours, like Harry Record, cannot adapt to Angus and believe that the family is taking risks. Just as Angus is the object of ridicule, Emmy is mercilessly teased for her deformity by Record’s son, Joey.

One night in a snowstorm both Joey and Angus disappear. Angus has been driven out of town and dumped by Harry Record, but he finds Joey lost in the storm and brings him home. Record refuses to accept his guilt and pleads not guilty. As the book ends Angus is more accepted, but a trial is looming, in which Emmy and Joey will have to give evidence against his father.

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Summary:

In his Introduction, editor Thom Schramm puts the themes of this anthology into perspective. He notes that the moods associated with bipolar disorder are familiar to everyone. Moreover, the notion that artistic creativity is associated with psychological instability is widespread; in fact, it is almost a stereotype, ranging in time from Plato's depiction of poets as suffering from "divine madness" to contemporary examples, like Sylvia Plath, Anne Sexton, and Robert Lowell. However, it should be evident that, since we all experience periods of sadness and elation, it is no wonder that poets of all stripes, no matter how "stable" they might be, may evince these moods in their work.

Living in Storms presents an array of contemporary poems grouped to reflect mania and depression from different perspectives. The book has eight sections. In the first three, the poet himself or herself expresses what it is like to be susceptible to mania or depression ("How It Is"), the experience of being there ("In the Mood"), and the experience in retrospect ("Remembering the Episodes"). The next two sections contain poems that approach these moods from more of a distance, either looking at the sufferer from another's perspective, ("Characters") or at the influence of manic-depressive sufferers on those around them ("Family and Friends"). The following section is devoted to poems about artists who suffered from manic-depression ("Artists"). The last two sections contain poems that depict shifts from one mood to the other, either on a daily or general basis ("Daily Shifts") or seasonally ("With the Seasons").

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A Kind of Alaska

Pinter, Harold

Last Updated: Mar-13-2008
Annotated by:
Coulehan, Jack

Primary Category: Literature / Plays

Genre: Play

Summary:

In this one act play, as a result of a new medication, a middle-aged woman named Deborah wakes up after spending nearly 30 years in a "coma." More precisely, she was in a dream-like state of unawareness or altered awareness that Hornby, her doctor, refers to as "a kind of Alaska."(p. 34) Deborah thinks that she has only been "asleep" for a short while, so she asks about her parents and sister, as if she were still the adolescent she remembers. Hornby assures her that her mind has been suspended all that time, although he has been at her side, fighting to keep her alive: "Some wanted to bury you. I forbade it." (p. 34)

 

Uncertain what to say, Pauline, Deborah's younger sister, now enters the hospital room. Hearing Pauline's news of the family, Deborah tries to comprehend what has happened, but it seems just too bizarre. Then Hornby reveals that Pauline has been his wife for more than 20 years. Deborah experiences the walls of her consciousness closing in, "Let me out. Stop it. Let me out. Stop it. Stop it." (p. 38) Suddenly, she returns to the conversation and summarizes everything she has heard. "I think I have the matter in proportion," she concludes.


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Nobody Else Has to Know

Tomey, Ingrid

Last Updated: Mar-12-2008
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Fifteen-year-old Webber hits a young girl, seriously injuring her, while taking a little illegal driving practice with his indulgent grandfather. Webber, himself, is injured, and unlikely to return to the track team he has loved. He has trouble remembering the accident during the first weeks of his recovery, especially since his grandfather has determined to take the blame for the accident. But as memory returns, aided by the bitter insinuations of a classmate who babysits the injured girl, Webber is torn between accepting his grandfather's cover for the sake of a clean record and an unencumbered high school career, and confessing. The technical fact that his grandfather was legally responsible for letting him drive complicates the ambiguity of his dilemma. Ultimately, he makes the decision to confess. The book concludes with his telling his grandfather of his intention--a decision that is sure to be relationally as well as legally consequential.

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Bringing Vincent Home

Mysko, Madeleine

Last Updated: Jan-27-2008
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Within the first few pages of this novel, the reader is thrust into the midst of a family--their past history, their present tragedy, and their future healing.  Kitty Duvall, a middle-aged woman living in Baltimore, Maryland, receives a phone call informing her that her son, soldier Vincent Duvall, has been injured in Viet Nam and now lies, severely burned, in the Intensive Care Unit of Brooke Army Medical Center.  Kitty packs her bags and rushes to his bedside.  Thus begins this straight forward and yet complex story, one that weaves between past and present, one that examines the lives of caregivers, especially nurses; the lives of patients, particularly those young men and women sacrificed to war; and the lives of the parents who must, as Kitty does, find their places alongside their dying or healing children, always wondering how best to help them. 

Although this book is a novel, it reads like a memoir.  Indeed, the events of the novel seem so right and so accurate because the author served as a lieutenant in the Army Nurse Corps at Brooke Army Medical Center during the Vietnam War.  Her own experience as a nurse, her own memories of the burned and wounded men, inform this novel and bring to it an accuracy and an urgency that takes the reader behind the scenes into unforgettable images of war and recovery.  Although set in the Vietnam era, this story is especially relevant today, when once again soldiers and their families must deal with the physical and emotional wages of battle.

 

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Annotated by:
Woodcock, John

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Jon Voight plays Luke Martin, a Marine sergeant who comes back from Vietnam with both legs paralyzed and faces the many challenges of constructing a liveable life. Jane Fonda is Sally Hyde, the wife of Marine captain Bob Hyde (Bruce Dern), who volunteers at a local vets hospital while her husband is overseas and there meets Luke, whom she had known slightly in high school. Sally gets to understand the plight of disabled vets, and she gets emotionally, and then sexually, involved with Luke.

Bob returns with a minor physical wound, but he has been emotionally traumatized by the war. He agitatedly threatens Luke and Sally with a bayonetted rifle, and Luke leaves Sally to Bob, as he knew he would have to do. Bob is much too distraught to be satisfied with this victory, however, and in a near-final scene, he swims out into the ocean surf to what we understand will be his death.

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Annotated by:
Woodcock, John

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Fifty-something Canadian professor of history and lifelong womanizer Rémy (Rémy Girard) lies in an overcrowded hospital with a fatal illness. Family and friends gather, including Rémy’s estranged son Sébastian (a wealthy financier played by Stéphane Rousseau) from overseas, and Rémy’s ex-wife (Dorothée Berryman) and several previous romantic partners. Rémy and Sébastian fight painfully about Rémy’s philandering, but after a plea from his mother Sébastian decides to make things better for his father, even if they have not been reconciled.

This he does in many ways, most of which involve spending lots of money and many of which are highly irregular or illegal. For example, he arranges to have his father taken into the U.S. for an expensive PET scan that would have required six months’ wait to have free in Canada. And he arranges through Nathalie (Marie-Josée Croze), a childhood friend who is now a heroin addict, to provide a regular supply of heroin to control his father’s pain, which the hospital apparently is not able to do with morphine.

These and other extraordinary measures work for Rémy, and the process of caregiving brings Sébastian and his father closer. (Rémy’s only problem seems to be the feeling that his life has been wasted because he has not left his mark--and he gets help with that, paradoxically, through several conversations with Nathalie.) For his last few days, Rémy and ensemble move to a friend’s lakeside cabin, where the conversation is witty, intellectual, and sexually frank, and the mood upbeat and conciliatory.

In the face of Rémy’s imminent demise, all is forgiven, and others seem to gain insight about their lives. Rémy’s last act is peacefully nodding to a sorrowful Nathalie to begin the series of heroin injections that will end his life. In a final dig at the establishment, the heroin is administered through an IV provided on the sly by a hospital nurse.

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