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This Lovely Life

Forman, Vicki

Last Updated: Jan-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

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.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This volume of new and selected poems was compiled during the last year of Jane Kenyon's life, while she was suffering from leukemia. It includes generous selections from her four published volumes of poetry, as well as 20 previously uncollected new poems. The book ends with an Afterword written by Kenyon's husband, poet Donald Hall, and the last poem she wrote, The Sick Wife (see annotation).

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Ghosts

Ibsen, Henrik

Last Updated: Dec-29-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Plays

Genre: Play

Summary:

Oswald Alving has returned home to visit his mother on one of the occasional visits he has made since leaving home as a young boy. He was sent away to prevent him from becoming morally contaminated by his father, Captain Alving, who subsequently died of syphilis. This time, however, he intends to stay and marry the maid, Regine; he is unaware that Regine is his half-sister, sired by the profligate Captain Alving.

Parson Manders, the mother's former lover, also visits and reprimands Mrs. Alving for not living a more conventional life and rearing her son. In the play's climax, Oswald reveals that he, too, is suffering from syphilis and will inevitably develop dementia. To make up for the past and to prove her love, Oswald asks his mother to give him a fatal dose of morphine when signs of dementia appear. At the end of the play it is not clear what she will do.

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The Alienist

Carr, Caleb

Last Updated: Dec-29-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story begins with Theodore Roosevelt's funeral. The narrator, a reporter with the New York Times, decides to tell a story that happened more than 20 years earlier in 1896 when Roosevelt was Police Commissioner of New York City. A serial killer is murdering young male prostitutes.

Roosevelt invites the infamous Dr. Laszlo Kreizler to form a special unit to track down the killer. The unit also includes the narrator and three members of the police department. Kreizler's qualification is that he is an alienist who champions the radical new concept of forensic psychiatry: the belief that one can predict a criminal's behavior by reconstructing his personality based on evidence in the crimes themselves. This concept smacks of determinism. Thus, Kreizler was violently opposed by many, including the religious establishment, who believed Kreizler was denying that people were morally responsible for their crimes.

Because of the sensitivity of their mission, the small investigative unit operates secretly, but runs into powerful opposition. Over several months Kreizler and his colleagues perform the seemingly impossible job of identifying and tracking down the killer, using Kreizler's psychological methods.

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Annotated by:
Kohn, Martin

Primary Category: Literature / Plays

Genre: Play

Summary:

Struck Dumb is a collaboratively written play based on the firsthand experience of stroke by one of the authors, Joe Chaikin. Chaikin, when about 50 years old, suffered a stroke during an operation for a faulty heart valve, which left him aphasic. Co-author van Italie, stated that this play "is a theatrical metaphor for the aphasic character's mind: his written thoughts literally come flying in at him from all sides of stage in full view of the audience." In this way an actor who is aphasic and can read, can play the role.

The main character, Adnan, is a "50ish" Arab-American living in Venice, California who has suffered a stroke. The "scenes" in the play revolve around a day in the life of Adnan beginning with "waking up," ending with "sunset," and in between with "practicing words," "my house," "the mall," and other everyday, yet extraordinary, concerns.

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In the Land of Pain

Daudet, Alphonse

Last Updated: Dec-29-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

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)

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

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.

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The Metamorphosis

Kafka, Franz

Last Updated: Dec-29-2009
Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Novella

Summary:

First published in 1915, this is the story of Gregor Samsa, a young traveling salesman who lives with and financially supports his parents and younger sister. One morning he wakes up to discover that during the night he has been transformed into a "monstrous vermin" or insect. At first he is preoccupied with practical, everyday concerns: How to get out of bed and walk with his numerous legs? Can he still make it to the office on time?

Soon his abilities, tastes, and interests begin to change. No one can understand his insect-speech. He likes to scurry under the furniture and eat rotten scraps of food. Gregor's family, horrified that Gregor has become an enormous insect, keep him in his bedroom and refuse to interact with him. Only his sister Grete demonstrates concern by bringing his food each day.

When Gregor breaks out one day and scurries into the living room, his father throws apples to chase him away. One becomes embedded in his back. Eventually the apple becomes rotten and infected; Gregor wastes away. When he dies the cleaning woman throws his remains into the garbage.

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Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction — Secondary Category: Literature / Fiction

Genre: Short Story

Summary:

The narrator is confined to her bedroom in a summer house as part of the rest cure for her "nervousness." A nursemaid takes care of the baby. Her husband John is a physician who insists that she remain completely inactive, not even picking up a pen to write.

The bedroom was formerly a nursery. It has ugly yellow wallpaper with a recurring pattern that begins to obsess the narrator. Given her loneliness and lack of emotional support, she begins to see a woman confined in the pattern of the "repellent, almost revolting" wallpaper. Eventually she decompensates and has a complete emotional breakdown.

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Summary:

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)

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