Showing 71 - 80 of 205 annotations tagged with the keyword "Institutionalization"

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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Annotated by:
Duffin, Jacalyn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

A beautiful elderly couple are forced to confront Fiona’s (Julie Christie) problems with memory. Always stylish and active, she begins to neglect her appearance and do odd things. She loses her way while cross-country skiing in a familiar terrain; at nightfall, Grant (Gordon Pinsent) finds her frightened and frozen. She decides that she must go into a nursing home, but Grant is horrified to learn that, in order for her to adapt, he may not visit for an entire month. When he finally returns, bearing a bouquet of flowers and hoping for her warm affection, he is stunned to find Fiona pleasant but indifferent to his presence. Instead, she is preoccupied, even infatuated with Aubrey (Michael Murphy), who silently occupies a wheelchair. Fiona is able to interpret Aubrey’s moods and desires.

At first, Grant is hurt and jealous, but gradually he accepts Fiona’s need to be important for someone. Haunted by guilt over an affair with a student years ago, Grant wonders if Fiona is somehow retaliating. When Aubrey’s wife Marian (Olympia Dukakis) brings Aubrey home because she cannot afford the care, Fiona is despondent. He approaches Marian about returning Aubrey to the center. Thrown together by their absent yet present spouses, Marian and Grant indulge in a half-hearted affair. By the time, Aubrey returns, Fiona may have forgotten him, but she still knows Grant and appears to recall his distant infidelity though so much else is lost. But he still loves her and together they can find reasons to laugh.

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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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The Cloud Chamber

Maynard, Joyce

Last Updated: Oct-08-2007
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Nate, 14, comes home to his family's Montana farm one day to see police cars. His father, whose head is bloodied from a gunshot wound, is taken away in an ambulance. He and his 7-year-old sister are whisked into the house and cared for by an aunt until their mother, shocked and withdrawn, returns home. In the weeks following Nate finds it hard to get any adults to level with him about what happened, though he overhears conversations that make it fairly clear it was a suicide attempt. The kids at school withdraw from him and his sister; parents in the area tell their children not to play with them, as they always suspected there was something strange about the family. Only one girl, herself something of an outcast because of her father's aggressive fundamentalist preaching, befriends him, and becomes his partner in a science project.

Nate throws his energies into the project--creating a cloud chamber in which radiation from distant stars can be seen--and into pitching for the baseball team. Both are enterprises his father would have helped him with. His father, a dreamer and scientific visionary, is in a mental hospital, recovering. The police fail to find the rifle, but Nate and two friends do find it, and so exonerate his mother, who has been under suspicion in the inconclusive case.

After the contest, in which a disgruntled student sabotages what is actually a remarkably successful and well-made project, he takes Junie and the family car and drives several hours to find his father who, it turns out, is lucid and recovering, but blind. Their mother is selling the farm, they are about to move, but there is hope of some recovery on all sides, though not what any of them would have foreseen or chosen.

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The Village Watchman

Williams, Terry Tempest

Last Updated: Aug-14-2007

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This is a short piece, a scant twelve pages, in which Williams remembers Alan, an uncle who had mental deficits. During his breech birth, Alan’s brain was starved of oxygen. In the dominant American culture, Alan is called “retarded, handicapped, mentally disabled or challenged.” Williams concludes, “We see them for who they are not, rather than for who they are.” (p. 29) The title of the work refers to an Alaskan totem pole figure whose expression reminds her of Alan. In Tlingit culture, there’s a story of a kidnapped boy who lived with the Salmon People. When he returned twenty years later, he was seen as a holy man, not an “abnormal.”

To the young Terry Tempest, Alan demonstrated enthusiasm and spontaneity, for example bowling with reckless glee, regardless of where the ball went. When she asked him how he was feeling, he said, “very happy and very sad,” explaining that “both require each other’s company.” (p. 31) She liked his direct answers, those of a person we sometimes call a wise fool. Later, he lived in a “training school,” a joyless, ugly, and smelly place where abnormal children in Utah were sent and warehoused. Suffering from epilepsy, he wore a football helmet to protect him from sudden falls.

At age 22, Alan made the choice to be baptized into the Church of Jesus Christ of Latter-Day Saints. Williams describes the ceremony and how the family supported him through it (including yet another violent epileptic episode). When Alan died at age 28, Williams was 18. Looking at the totem pole, she remembers Alan, seeing him for who he truly was.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Author Diedrich investigates ("treats") mid-late 20th century memoirs about illness (illness narratives) from an interdisciplinary perspective drawing on the disciplines of literature, social sciences, and philosophy. Her analysis uses the theoretical frameworks of poststructuralism, phenomenology, and psychoanalysis to consider "what sort of subject is formed in the practice of writing . . . illness narratives," the kind of knowledges articulated by such writing, whether and how such writing can transform "expert medical knowledges," how language operates in these memoirs, and "what sort of ethics emerges out of such scenes of loss and the attempts to capture them in writing" (viii).

The book is divided into Introduction, five chapters on specific memoirs, and Conclusion. Chapter 1, "Patients and Biopower: Disciplined Bodies, Regularized Populations, and Subjugated Knowledges," draws on Foucault's theory of power to discuss two mid-20th-century memoirs of institutionalization for tuberculosis. Betty McDonald's the Plague and I is compared with Madonna Swan: A Lakota Woman's Story. Dividing practices and regularization are shown to serve different functions in these two incarcerations, figurative in the case of Betty McDonald, and literal in the case of Madonna Swan.

Chapter 2, "Politicizing Patienthood: Ideas, Experience and Affect," draws on Foucault's approach to the subject and on his discussion of "practices of the self" in contrasting Audre Lorde's The Cancer Journals with Susan Sontag's Illness as Metaphor and AIDS and Its Metaphors (see annotations). Diedrich also brings into her analysis Eve Sedgwick's theory of queer performativity and Sedgwick's own illness narrative, White Glasses. Diedrich views all of these as counter narratives to the clinical medical narrative of illness but she shows how they differ in stance.

Chapter 3, "Stories For and against the Self: Breast Cancer Narratives from the United States and Britain" looks at "the arts of being ill" as they are represented in two cultures, two "conceptions of the self in these countries at a particular historical moment" (61). The narratives discussed are Sandra Butler and Barbara Rosenblum's narrative, Cancer in Two Voices and Ruth Picardie's Before I Say Goodbye (see annotations). Diedrich associates Cancer in Two Voices with an American notion of self-improvement and Before I Say Goodbye with a British "emphasis on the cultivation of an ironic self" (55). The author works in this chapter with Freud's idea of the uncanny, Benedict Anderson's concept of "imagined political communities" and Elaine Scarry's discussion of pain, language, and the unmaking of the self.

Chapter 4, "Becoming-Patient: Negotiating Healing, Desire, and Belonging in Doctors' Narratives," treats Oliver Sacks's illness narrative, A Leg to Stand On, Abraham Verghese's autobiographical My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS, and Rafael Campo's book of essays, The Poetry of Healing (see annotations). Here Diedrich considers "the possibility that doctors, especially AIDS doctors, might become patients through desiring-and writing-productions" (83) and she utilizes the rhizome model of Deleuze and Guattari to make her case. She discusses how Verghese and Campo are each both cultural insiders and outsiders and how they each "bring the body into language through their writing" (88).

Chapter 5, "Between Two Deaths: Practices of Witnessing," focuses primarily on Paul Monette's writing about the loss of his partner to AIDS, and on John Oliver Bayley's books about the loss of his wife, Iris Murdoch, to Alzheimer's, and her ultimate death (see annotations in this database). In this chapter Diedrich invokes Lacan's concept of the real and his formulation of "the ethical possibility of being between two deaths" (117). She draws also on trauma theory and the work of Kelly Oliver, a contemporary feminist philosopher who has written on witnessing.

Finally, in her "Conclusion: Toward an Ethics of Failure," Diedrich returns to Elaine Scarry's "phenomenological discussion of the experience of pain" and brings in Jean-François Lyotard's concept of incommensurability and his suggestion between the two poles of what is seemingly incommensurable one might search, in Diedrich's words, for "new rules for forming and linking phrases between . . . subject positions" (150). In that context she analyzes physician Atul Gawande's discussion of medical uncertainty and error in his book, Complications (see annotation) and philosopher Gillian Rose's book, Love' s Work. Diedrich concludes that the basic incommensurability between doctor and patient can be a starting point for a new ethics, an ethics of failure and risk "because by taking such risks [of failure, of relations], we open up the possibility of new routes, new treatments: in and between art, medicine, philosophy, and politics" (166).

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Because She's My Friend

Sirof, Harriet

Last Updated: May-29-2007
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

Serving as a summer hospital volunteer, fifteen-year-old Teri d'Angelo meets Valerie Ross, a girl her age who has damaged a nerve in a fall, and lost the use of one leg. Valerie's anguish over her partial paralysis takes the form of anger; she manages to keep most of those who try to help her at a distance. But Teri finds her intriguing, and Valerie's condition evokes a kind of sympathy and interest in her that overcomes even the patient's most strenuous rebuffs. Gradually, and with much caution on Valerie's part, they become friends. Valerie finds herself welcomed into Teri's large, warm Italian-American family. Teri's compassion for Valerie grows as she recognizes her loneliness; Valerie's parents are divorced, her father rarely visits, and her mother keeps up a hectic work schedule.
      
Teri also benefits in ways she didn't expect from the friendship; Valerie's bravery, even when masked with anger, inspires her to speak up more clearly on her own behalf, to ask for what she needs, and even to circulate a petition at school when she feels she has been discriminated against in the judging of a science project.
     
When Valerie is taken to a "sanitarium"-a mental health facility-for depression and apparently psychosomatic involvement of her good leg in the paralysis, Teri visits her patiently, despite Valerie's apparent lack of interest. But finally, when she watches Valerie rejecting the grandmother who traveled from England to see her, she acts in uncharacteristic anger, and in the shock of the moment, Valerie stands up, proving to herself and others that her good leg does, infact, function.  It is a turning point in her healing.

In an interesting twist, the book ends with the girls drifting apart.  They are, indeed, very different. Valerie is planning to attend City College in engineering. Valerie is going to live with her grandmother in England and attend Oxford University, hoping later to become a writer. In a final phone call, two years after Valerie's accident, the girls part with some affection and gratitude on both sides, but also with an acceptance of the fact that their friendship may have been for a season. They gave each other important gifts, and now life is taking them in very different directions. 

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When the Emperor Was Divine

Otsuka, Julie

Last Updated: May-25-2007
Annotated by:
Aull, Felice

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This short novel tells the story of a Japanese-American family’s internment during World War II. They are living comfortably in Berkeley, California, when their nightmare begins. Soon after Pearl Harbor the husband/father is arrested by the FBI--taken away in his housecoat and slippers. We learn of this through the narration of the eight-year-old son, his ten-year-old sister, and their mother--who are rounded up several months later and sent to a camp in Utah. The father remains shadowy--a figure of memory, wishful thinking, and censored letters stamped "Detained Alien Enemy Mail." The reason for his arrest is never explained, as if there is no reason to question the man’s loyalty.

After her husband’s arrest, the mother is left to take care of her children and the house. A few months later she must pack up the household belongings, give away the family cat, kill and bury the family dog, tell her daughter to let loose the pet macaw. They are allowed to bring with them--where to they do not know--only what they can carry. They take an endless train ride through the Nevada desert to reach an internment camp in Utah, "a city of tar-paper barracks behind a barbed-wire fence on a dusty alkaline plane high up in the desert" (49).

Here they remain until the war ends, some three and a half years later. They learn to live in one room with a single light bulb; to stand on line for everything; to eat in the mess hall; to avoid rattlesnakes, scorpions, and the sun; and to "never say the Emperor’s name out loud" (52). They are unable to avoid the desert dust that covers and gets into everything. The children attend makeshift classes, play cards, are bored, lonely, and confused. The boy misses and has fantasies about his father, the girl reaches adolescence and becomes cynical, the mother is too depressed to eat or read.

At the end of the war, the three are allowed to go home "with train fare and twenty-five dollars in cash" (117). Their house has been vandalized; neighbors, teachers, and classmates either ignore them or are openly hostile. Finally their father is released from detention in New Mexico, a changed man both in appearance and spirit.

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