Unwell

A doctor writes about coping with illness
By JOHNETTE RODRIGUEZ  |  April 18, 2007
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Michael Stein

In combining the dual careers of novelist and physician, Michael Stein has honed his skills of observation of characters and patients; sharpened his analytical faculties for plot or diagnoses; and developed a crisp but fluid style that displays wit and intellect for resolutions or consultations. In his newest book, he lays the dual tracks of his professional life on top of each other as he writes about what it’s like to be a doctor.
 
The Lonely Patient: How We Experience Illness is Stein’s first non-fiction book, and it grew out of a series of lectures he gave at Brown University Medical School, where he is a professor of medicine and community health. The other impetus was the terminal illness of his brother-in-law Richard, a man 20 years his senior, whom Stein regarded with great affection, as an argumentative uncle, engaging colleague, and dear friend, all rolled into one.
 
It was Stein’s own reactions to Richard’s diagnosis of a rare form of sinus cancer that jolted him into the realization that as a young doctor he had been trained to keep an emotional distance from his patients and that posture had not allowed him to recognize the internal journeys into the alienating land of illness upon which they were embarked. Once he thought about what he’d heard from patients, however, he came up with four strong feelings experienced by most of them: betrayal, terror, loss, and loneliness.
 
These define the four sections of the book, in which Stein distills marvelously apt metaphoric descriptions — of pain, suffering, fear, health, illness. His images give us a clearer, more vivid understanding of the emotions he is describing. He also weaves through his own ruminations the words of others who have written about illness: Oliver Sacks, Susan Sontag, Reynolds Price, and Flannery O’Connor, and less well-known writers, such as Lucy Grealy, Dominique Bauby, and Jennifer Estess. The pithy quotes he chooses deftly underscore and elaborate the points he is making.
 
The most memorable and distinct parts of Stein’s book are the narratives of particular patients, carefully laid out to create a dramatic arc to their stories: What first brings them to consult him? What are possible treatments for their problem? What is the outcome? As in most medical tales, not all endings are happy ones — i.e., a complete return to health. But Stein uses his interactions with these patients to inform and advise his readers — be they patients, family caregivers, or medical providers — about the inner turmoil that overtakes anyone who becomes ill.
 
First is Joanna, an energetic and athletic thirty-something, who has become debilitated and depressed by constant pain in her feet. Tests are inconclusive; treatments are unsuccessful. Joanna feels angry, out-of-control, betrayed by her body, but eventually she finds her own methods to cope, including a support group. Next comes Luke, with a strange bump on his forehead that definitely needs surgery, which he persistently refuses. Stein recognizes Luke’s terror but not its true source — the anesthesia — until several conversations bring that out of him.
 
The chapter on loss is illustrated by 18-year-old Leila’s situation: a salivary gland tumor and, although it is benign, Leila, a shy teenager, must cope with a disfiguring scar on her neck. Stein knew Leila as a soccer player, and he hopes her competitive spirit can pull her out of her sadness, though it’s actually a new boyfriend that is key to her recovery.
 
The book’s last section on loneliness, which is fed by all the other deep emotions of illness, is crucial to Stein, both because it involves an AIDS patient whose loneliness he wishes he’d picked up on and because it crystallizes an evolving issue between patient and physician. Patients need to talk and physicians must encourage them to so by showing a strong measure of empathy and active listening.
 
Stein addresses this concern in a twofold manner: he shares his careful observations and thoughtful analyses of the distress in which people with illness find themselves; and he opens his heart to the reader about his last visits to Richard’s dying bedside. In so doing, he gives us his humanity, and that’s all any patient really wants from a doctor.

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