Summary:

This unusual story, beautiful and overwhelmingly sad, is set in Sicily on the craggy and barren island of Lampadusa surrounded by the bluest of seas. Everyone in the small fishing and canning village may be related; certainly, this is a place where secrets are not possible. Grazia (Varria Golino) appears to be the loveliest and most loving mother and wife, although her carefree, even childlike behavior is foreboding. The camera loves her and so do viewers who are ravished by her beauty and innocence.

With children positioned on the back of her Vespa, she and they escape to a deserted beach where she swims topless with her children; later, she releases hundreds of howling stray dogs from their inhumane confinement. Not surprisingly, spied-upon actions such as these produce critical response from more conservative neighbors whose norms are less capricious.

When signs of instability and manic depression become apparent, the community joins together to suggest hospitalization to her very supportive and heart-broken husband (Vincenzo Amato). She, like the caged-up dogs, seems to deserve the kind of freedom epitomized by her trips to the beach and will not, we sense, survive medical "imprisonment."

At this juncture, just as her wings are to be clipped, the story’s unexpected turn forces the mourning village to wonder about human frailty and reality. The ending, ultimately unclear and haunting, is a celebration of imaginative madness and ephemeral beauty. Visually stunning.

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Oscar, the narrator of this fresh fictional gem, is ten years old. Because his form of leukemia has not responded to treatment, he has been living in a French hospital for a very long time. His parents, who bring him gifts and surely love him, are uncomfortable during their infrequent visits. Dr. Dusseldorf and the nurses are kind, but indirect and distant in their communications with him. Because no one talks to him about his illness or what is likely to happen, he feels isolated, alone, and miserable.

When Mamie-Rose, a very elderly hospital "pink lady" (hospital volunteer) with an exotic past, enters Oscar's life, she brings honesty, warmth, and comfort to the lost child known as Bald Egg. Guided by this incredible person--a blunt-spoken, irreverent woman who touches him, kisses him, and tells him wondrous stories of her wrestling feats--the boy grows stronger. Who wouldn't under the influence of the Strangler of Languedoc?

Of course Oscar is going to die. In addition to her generous companionship and her introductions of him to other children in the hospital, Mamie-Rose suggests letters to God as a way of feeling less lonely. "So God, on the occasion of this first letter I've shown you a little of what my life in the hospital is like here, where they now see me as an obstacle to medicine, and I'd like to ask you for clarification on one point: Am I going to get better? Just answer yes or no. It's not very complicated. Yes or no. All you have to do is cross out the wrong answer. More tomorrow, kisses. P.S. I don't have your address: what do I do" (65).

With Mamie-Rose treating him like a real kid, "move your but . . . we're not ambling along like snails" and Oscar scripting very candid letters to God, the first-person story about loneliness, love, and compassion is presented with spirited imagination. Oscar's story is quite extraordinary--and unforgettable.

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Summary:

Because this lucid, rich, and incisive book has not, as yet, been published in the United States, it has not acquired the readership it deserves. For those teaching Medical Humanities or those interested in broader or more global stories and perspectives about physician training, practice, and experiences, Helman’s most recent publication should be considered.

Part One (“Setting Out”) begins in South Africa where Helman’s family, comprised of a dozen doctors, has lived for generations and where his own medical studies occurred. As a child, he accompanied his father on rounds while other children spent holidays at the beach. Before long he discovered how hospitals, during the madness of Apartheid, were to “some extent a distorted mirror-image of the world outside” (3). Appalled by the differences in care and treatment, the keenly aware young man kept notes. His vivid observations of the harsh context of social injustices provide an unequivocal, eloquent, and disturbing critique of medicine then and there. His acute observations of physician behaviors and indigent populations in the city and in the bush contribute, as readers discover in later chapters, to the author’s expanded and compelling interests in cultural anthropology.

Part Two (“The Family Doctor”) leads to London. “After all the heat and light and space of Africa, London—with its low leaden sky and constant drizzle—was like living inside a Tupperware box, one stored deep inside a refrigerator” (47). In the 60s Helman’s migration required an adjustment to a world of technology and order, where as a family practitioner, he had become, in fact, a suburban shaman. In any society, patients wanted “relief from discomfort, relief from anxiety, a relationship of compassion and care, some explanation of what has gone wrong, and why, and a sense of order or meaning imposed on the apparent chaos of their personal suffering to help them make sense of it and to cope with it” (xvi).

Gradually Helman saw connections between the role of family physician and traditional healer: both involved an understanding of “not only a body’s internal equilibrium but also the equilibrium of the patient’s relationships with the world he or she lives in and how treatment should aim not only to treat the diseased organ but also to restore the patient’s life that equilibrium of relationships” (xvii). His encounters with patients and the stories they reveal suggest how important these often overlooked connections are and why they ought to be included in medical training and practice.

By the time readers reach Part Three ("States of the Art”), the author has moved into broader realms of thinking, in which medicine and illnesses are examined anthropologically. After 27 years of clinical practice Helman’s white coat and stethoscope are placed on a hook. Now, as a credentialed anthropologist at University College London, his larger lens allows for sustained scrutiny of the complexities, ambiguities, and nuances in such chapters as “Grand Rounds,” “Hospitals,” “Placebos,” “Third Worlds.” Helman’s range of experiences, multi-disciplinary training, intellectual conclusions, and abundant common sense argues for techno-doctors to learn from holistic practitioners. Whether devastating or humorous, the critiques reflect not just care provision but shared human capacities: the insights are thoughtful and fresh and very worthwhile.

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This story details several months in the life of a thirteen-year-old with incurable kidney disease and of her extended family--the policeman father who has cared for her since her mother ran off, the mother who reappears in time to learn she is the most likely donor, two sets of grandparents and several of the father's close friends. Two women in the father's life find their romantic attachments to him complicated by his role as his daughter's caretaker.

As Mary Grace's health deteriorates, her maturing accelerates. Each of the principal characters has to come to terms not only with impending loss, but with how this crisis reconfigures old patterns of family conflict and dependency. The story continues after her death as focus shifts to the father's grief, mourning, and new empathy with victims of accident and loss.

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In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.

The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.

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Summary:

Dominic Birdsey's identical twin, Thomas, is paranoid schizophrenic. With proper medication he can work at a coffee stand, but occasionally he has severe outbreaks. Thinking he is making a sacrificial protest that will stop the war in the Middle East, Thomas cuts off his own hand in a public library. Dominic sees him through the ensuing decision not to attempt to reattach the hand, and makes efforts on his behalf to free him from what he knows to be an inadequate and depressing hospital for the dangerous mentally ill.

In the process, Dominic reviews his own difficult life as Thomas's normal brother, his marriage to his ex-wife which ended after their only child died of SIDS (Sudden Infant Death Syndrome), and his ongoing hostility to his stepfather. First in Thomas's interests, and then for his own sake, he sees a gifted Indian woman employed by the hospital as therapist. She helps Dominic come to understand Thomas's illness and the family's accommodations or reactions to it in terms of the whole family system.

In the course of treatment, Dominic discovers sexual abuses taking place in the hospital and helps to expose the perpetrators. He succeeds in getting Thomas released, but Thomas soon commits suicide. After Thomas's death Dominic finds out about their birth father--a secret their mother had shared with Thomas, but not with him.

He also learns that the woman he has been seeing is HIV-positive. She asks him to keep her baby if she dies. At first he resists, but later, having found his way back into relationship with his wife, he takes the baby. The book ends with several healing events that leave Dominic able to cope with the considerable loss, failure, and sadness in his personal and family history.

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Eleven-year-old Amy has been hiding cookies beneath her bed, drinking gallons of liquid to slake her thirst, getting headaches, feeling irritable, and failing to grow though she's been eating huge meals for months by the time she faints and is taken to the hospital. There she is diagnosed with Type 1 diabetes. Though she feels disoriented and angry, she is immediately put into a training group with other kids around her age who have been recently diagnosed.

She has to learn how to maintain a carefully balanced diet and how to give herself insulin injections. The male nurse who teaches them is himself a diabetic as well as a competent, cheerful young man who takes the edge off the experience. He makes it clear to Amy and the others that the primary responsibility for their health maintenance routines lies with them personally.

After release from the hospital, Amy begins to deal with the social adjustments her disease demands. Her brother and parents are helpful, but uncertain about how much to change their own eating habits to accommodate her. Her younger sister finds the accommodations trying and unfair. Amy's friends also have learning to do.

It helps her that she knows a few other diabetic kids, including Coby, a boy who has struggled with his own resentment and the consequences of sloppy monitoring of his condition, but has learned how to control his diet for the sake of staying on the baseball team where he's a star player. Their friendship helps Amy transition into "normal" life hopefully.

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Like her earlier collection, Words Like Fate and Pain (see this database), the thread of connection among these exquisite poems is the experience of chronic suffering. However the poems vary widely in focus and content, including those that touch on the intimacies of love found and lost, family relationships, musings on the road, political events, philosophical ideas, and qualities of words themselves. All open doors to an inner life deeply examined and thoughtfully lived. The poems deal frankly not only with the experiences of various kinds of pain, but with pain remembered and feared, with the mental detachment that enables one in pain not only to endure, but even at times to be playful about the business of living life in spite of ongoing suffering.

One is aware of the speaker in these poems as not only a patient, but as a writer who loves words, a woman who enters wholeheartedly into the relationships life puts in her path, and an observer with a wry wit and sharp sense of irony. Poem titles include "Cripple Time," "Trauerarbeit," "Phantom Life," "The Mind, That Ocean," "Pain as Metaphor," "Sleeping in My Notebook," "One, With Egg Roll," and "Waltzing the Gorilla."

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This memoir by Joan Saltzman recounts her marriage, in her forties, to a man whose kidney disease was progressing to a point of choice between dialysis or transplant.  The first half of the book is a lively account of their somewhat stormy courtship, layered with memories of her childhood and reflections on tensions with and loss of her parents.  The second half focuses largely on the difficult decision to donate one of her own kidneys to her husband.  Even undergoing tests to determine she was a match required some wrestling with fear and resistance.  The chronicle continues through bumpy recoveries to a new level of intimacy and understanding of ongoing shared life in new terms.  Her idea of "complete recovery" had to be modified once she recognized that even a successful transplant doesn't restore a former state of health, but does restore a new range of possibilities.

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This memoir of a lifelong struggle with bipolar disorder, complicated by eating disorders and alcoholism, records the internal experiences of mania, confusion, depression, delusion, anxiety, terror, wild impatience, discouragement, and at times clarity and resolve that alternate in her life of recurrent struggle.  Diagnosed somewhat belatedly as rapid cycling type 1 bipolar disorder, her disease drove her to one disastrous coping strategy after another until she was hospitalized for her eating disorder and for cutting herself.  After years of intermittent hospitalizations and encounters with several incompetent psychiatrists as well as a few who were consistently helpful, she has come to understand exactly the kind of help she needs-at times trusting others' assessments of her condition more than her own, accepting supervision, abstaining from all alcohol-a critical factor in avoiding psychosis.

Her doctors continue to recalibrate her complicated drug therapies, and her moods and control remain precarious, but she has learned to live with a disease that seems still to be poorly understood, accept the limits it imposes, and handle it with intelligence, humility, and even at times a wry note of humor.  She has learned to accept help from the husband whose love survives recurrent unintentional abuse, and from parents and friends who remain supportive.  She ends the memoir on this note of acceptance, appending to it a list of facts and statistics about bipolar disorder designed to help situate it for the reader relative to other diseases and disorders.

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