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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The story is based on an actual 1950's trip by two university friends, Ernesto 'Che' Guevara (Gael Garcia Bernal) and Alberto Granado (Rodrigo De la Serna). Guevara is studying medicine, Granado biochemistry. They plan to travel from Buenos Aires across the Andes Mountains to Chile, Peru, and, then, to Venezuela. Before too many miles their derelict 1939 motorcycle fails, and the two young men continue by whatever means is available. The journey intent is one of adventure--drinking, meeting women, seeing the world.

The young men do discover South America's impressive natural beauty but more strikingly, their eyes and sensibilities are directed to abject poverty and shocking injustices. These blatant inequities, as well as an extended period of time in a leper colony, contribute to the reframing of their original happy-go-lucky adventure and explain, in part, the impulses that eventually would shape Guevara's role in the Cuban Revolution.

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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 play in eight scenes presents the fictionalized character of Alice James, sister of Henry and William James, who after a sickly childhood, succumbed at 19 to a variety of vague and recurrent illnesses that made her a lifetime invalid. She died at 43 of breast cancer.

In a series of encounters (with her nurse; her father; her brother, Henry; several Victorian female figures: Margaret Fuller, Emily Dickinson, and mythological figures from Victorian fantasy fiction and from Parsifal; and a burglar), as well as a long dramatic monologue, her various forms of internal conflict are hilariously and poignantly articulated. They converge on the implications of her recurrently deciding whether or not to get out of bed and do something, and her confusion, often discussed by biographers and critics, about her place in her brilliant family, her vocation as a woman, and her own desires.

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Richard (Kenneth Branagh) is assigned alternative service as a consequence of a misdemeanor. A social worker connects him with the mother of a young woman, Jane (Helena Bonham Carter), who is suffering from Lou Gehrig’s disease. Feeling reluctant and unequipped for such responsibility, he starts taking her on tame outings suggested by her mother. Initially she is hostile and resistant; gradually he gives way to her insistence on unpermitted activities: he takes her on a carnival ride, drives her around in his jeep, makes her dinner at his shabby rural cottage, about all of which the mother remains clueless.

Jane acknowledges that he is the only one who treats her like an adult. In a rare moment of vulnerability, she asks him to help her lose her virginity, not necessarily to "do the awful deed" himself, but to help her hire or find someone who will give her an experience of sex before she gets to the point where it’s impossible. He refuses, she won’t see him, and for a time her mother tries to find another caregiver--a hopeless failure--a woman who talks down to her.

Richard attempts other community service and runs into comic difficulties attempting to help old women, clean toilets, and finally retreats to his outpost where he is building a plane out of scrap metal and junk in a barn. He’s insolvent, but determined to carry through his project, if only, like the Wright brothers, to keep it aloft for 12 seconds. His landlord announces that he’s selling the place and Richard and his airplane will have to clear out within a month. This impels him to try his biplane.

In the meantime, Jane searches internet dating agencies, advertising herself as a "hideously crippled woman" seeking sex, but gives it up. Missing her, Richard finally comes to her home and consents to take her to "get shagged" if she won’t blame him for any of the consequences. They go to London and seek agencies for the disabled that are willing to help her experience sex. The only positive response she encounters is at a nightclub specially for the disabled. She’s horrified.

They go upscale, to a hotel where "gigolos" might be available. Richard hilariously serves as her go-between. He finds one who, alas, charges 2000 pounds. Finally she says, "Okay, then, you’ll have to do it, Richard." This brings him to acknowledge that he’s "a cripple," meaning that he’s been impotent for some time. Instead of offering her himself, he offers to rob a bank. He doesn’t, however, go through with the robbery, but returns to take Jane home with him where she remains as she’s dying.

Ultimately, Jane and Richard both discover that love and friendship are what matter. He takes her up for the one flight his plane is capable of: a few glorious minutes over the sheepfields. The experience caps her life and seems to promise a beginning of his. She tells him, "You have a future, Richard. Either take it or switch bodies with me." She leaves him a final message on the voice machine which is the only way she can communicate, encouraging him to claim his life, and reflecting, "The only life you can have is the one that is available to you."

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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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When Gwen is twelve, her parents, suspecting her failure to show signs of normal adolescent development may be more serious than they had thought, have her tested and learn that she has Turner syndrome, a chromosomal disorder that frequently manifests in short stature, broad chest, low-set ears, amenorrhea and sterility. The diagnosis brings a new source of discord into an already somewhat dysfunctional New England family.  Gwen's mother, Paulette, prefers not to talk openly about Gwen's condition, or even, for a time, to admit it is real.  Her father, a scientist at MIT, is deeply interested in finding out more about it, but the clinical nature of his interest offends his wife.

Eventually the parents divorce, each to cope with different kinds of loneliness and alienation from Gwen and her two brothers.  One of those brothers, the designated achiever, is gay, but remains closeted for some years, in keeping with his mother's family culture.  The other, after a somewhat rebellious youth, marries a girl from blue-collar California, takes a teaching job, and eventually finds himself identifying with his son who receives a diagnosis of ADD not available during Scott's own youth.  The novel follows the individual stories of the five family members, each of whom carries his or her own burden of suffering, and brings them together during an unusual holiday gathering at the end, not for magical closure, but for a remarkable moment of retrospective understanding and opportunity for each to do some self-assessment and self-disclosure.

At the heart of the story is Gwen's "condition," recognized by all of them as the sadness that lies at the core of their family's chronic discomforts with one another.  Gwen herself finds her way into an authentic love relationship in her mid-thirties with a Caribbean diving guide she meets on a chartered excursion.  Though her mother is horrified and suspicious, and the rest of her family bemused, the experience of authentic love and friendship liberates Gwen from a history of self-defeating presumptions about her own limitations.

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This memoir purposefully intertwines a personal and professional coming of age with the chronic illness that shaped it. Roney's stories of her adolescence, college years, and beyond (she is now a graduate student approaching her fortieth birthday) integrate the story of her diagnosis with juvenile diabetes around age 12 and her changing approaches to living with, rather than simply "managing," her illness.

How diabetes inflected Roney's development as a woman, including such issues as body image; food, eating, and weight; and sexuality and love relationships, is a recurrent focus, with her unsatisfactory relationships with men often taking center stage. One chapter addresses her decision, in the face of fears about blindness, to become a writer instead of a visual artist. Other sections address travel and exercise, both explored as solo experiences and as struggles negotiated in the company of friends and strangers. Roney's experiences with family members and medical professionals in the context of her illness are an occasional focus.

While in most of the memoir Roney positions herself as an ill person in relationships with healthy people, in two sections she explores her relationship to others with diabetes: a woman her own age whose illness has made her completely blind, and her aging cat. Throughout the memoir, Roney moves from her own experience to broader philosophical reflections on the social construction of illness, especially the way that interpersonal relationships shaped by "invisible" disabilities like diabetes reflect cultural beliefs about illness and how it changes personhood.

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