Survivors' Tales
An account of how chronic illness changes lives.



"Broken" tells the stories of five people living with chronic illness. Top from left: Larry Fricks, Sarah Levin, Buzz Bay. Bottom from left: Denise Glass, author Richard Cohen and Ben Cumbo. (Mark Ostow Photography)

By Richard M. Cohen



In The Illness Narratives, his brilliant study of chronic illness, psychiatrist Arthur Kleinman recalls one of the first patients he encountered as a medical student, a "seven-year-old girl who had been badly burned over most of her body" and "who had to undergo a daily ordeal of a whirlpool bath during which the burnt flesh was tweezered away from her raw, open wounds." Kleinman had been assigned the job of holding the girl's unburned hand as each day she begged and screamed her way through the terrible procedure. But nothing Kleinman did or said to divert the girl calmed her until one day, frustrated, he asked her what it was like to be so badly burned. For the first time, she quieted. And then she began to tell him her story.

I kept thinking of this as I read Richard M. Cohen's Strong at the Broken Places. A former television news producer who is married to Meredith Vieira of the "Today" show, Cohen is also author of a bestselling memoir, Blindsided, about living with multiple sclerosis and colon cancer. In his new book, based on interviews conducted over two years, he seeks to give voice to "five strong people on the front lines of illness," as he puts it, all of whom are coping with life-threatening chronic diseases: Denise, from California, with ALS (Lou Gehrig's disease); Buzz, from Indiana, with non-Hodgkin's lymphoma; Ben, from Maryland, with muscular dystrophy; Sarah, from Ohio, with Crohn's disease; and Larry, from Georgia, with bipolar disorder.

The strength of these profiles derives from Cohen's focus on chronic illnesses that, as he notes, are not "sexy" and generally "do not resolve themselves." The stories his interviewees tell are neither triumphant narratives of crisis and restoration nor medical adventures, like those TV hospital dramas in which the suffering of patients serves primarily to heighten the moral and personal dilemmas of heroic doctors.

Instead, these are stories dense with quotidian details that reveal how chronic illness repeatedly assaults a patient's identity. At one point, we see the recently married Sarah, who has already had her large intestine and colon removed as a result of Crohn's disease, negotiate the prospect that she will also need a permanent ileostomy that will cause her body wastes to pass directly from her small intestine to an external plastic pouch. "I twiddle my thumbs," she tells Cohen, "waiting for things to fall apart again." Indeed, uncertainty pervades these narratives. "Those who suffer serious sickness," writes Cohen, "know there is an ambulance with their name on it, parked just around the corner."

But Cohen's new book more often feels well-meaning than it does affecting, in large part because his subjects' voices are often submerged within his own earnest and importuning prose: "These are the faces of illness in America," he begins. "Do not look away. The characters may surprise you, even shatter a stereotype or two. They are people, not cases, survivors, not victims." Cohen too often sounds like a TV journalist narrating a feature story, with a broadcaster's penchant for alliteration -- "a death-dealing illness," a "strong streak of self-reliance," "a cocktail of condescension" -- and unearned gravitas. Likewise, he structures each profile as if it were a feature for "20/20" or "60 Minutes": a few intimate scenes of the subjects in their daily lives, some talking-head footage and a sober voice-of-God narration that proves less penetrating than it might.

One wants to tell Cohen to step aside so that the reader can see these desperately ill people without his shadow falling across them. And indeed, when he occasionally does get out of the way the stories assume their true power. He accompanies Denise, for instance, who is still in the early stages of ALS, to visit Neil, a former ophthalmologist whose ALS is so advanced that he's been in "total lockdown" for four years, unable to move or speak or even blink his eyes. Cohen simply watches as Denise slowly steps back from Neil's bed in fear, "seeking distance" from what seems a vision of her own future, "longing to be invisible."

It's in moments like these that I found myself recalling Kleinman's story of the burned girl. I thought of the force that such stories of suffering bear, including those that Cohen tells here. But I also remembered how Kleinman didn't interrupt the girl once she started speaking. He just listened. *

Richard McCann, most recently the author of "Mother of Sorrows," is working on a memoir of his experience as a liver-transplant recipient.

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