A 42-year-old woman suffers for years because "the doctors at a world-famous cancer center" screwed up. A physician struggles with a colleague's incompetence. A new mother keeps silent about her post-partum depression, sure no one will understand. The victim of a neurological ailment lives with the twin burdens of his crippling disease and a benefits system that demands he prove he's really sick.
In 2003, the Pittsburgh-based journal Creative Nonfiction published a special issue about patients' rights and medical mishaps. Now the 11 essays from that volume, plus five more, have been reissued by Southern Methodist University as Rage and Reconciliation: Inspiring a Health Care Revolution. In many ways it's a potent collection. But while these essays movingly, and often incisively, diagnose some of what ails our health-care system, collectively they can feel as though they're focusing on flat feet when the patient's arteries are clogged.
Creative Nonfiction founder and editor Lee Gutkind intends to restore individual voices -- complex, curious, human voices -- to patients, doctors and others in a discussion that's typically limited to sound bites, anecdotes and dry policy statements. Some essays succeed beautifully. While everyone has health concerns, for instance, few patients (one hopes) have been as seriously misled as Ruthann Robson, whose "Notes from a Difficult Case" tells how she underwent months of needless chemotherapy and anguish because of repeated misdiagnoses and careless doctoring. And fewer still could muster their experience with the passionate precision of this New York attorney who refused to sue for malpractice, partly because it would have meant surrendering the right to speak out about her case.
Likewise, Pittsburgh writer Deborah McDonald ("The Agony and the Agony") navigates the maze of hope and despair in the life of a sufferer of chronic pain. Los Angeles author Judith Dancoff ("A Merging of Head and Heart"), who has a pituitary disorder, provides a palpable sense of the wretched tricks the human body can play. In "Postpartum," Arizona-based writer Nancy Linnon goes deep inside both her own mind and the mythology of ideal motherhood; "Lessons from the Unlikely," by Erin Newport, of Topeka, Kan., is both clear-eyed and emotionally honest in discussing the parenting of a son with Down syndrome. And in "A Measure of Acceptance," Oregon writer Floyd Skloot, a former marathoner crippled by Epstein-Barr virus, beautifully renders the experience of coping with the social barriers of disease while learning to live with it oneself.
One risk of such a book is redundancy: The plaints of the ill, however genuine, can blur together. Halfway through, we get it -- many doctors are social maladroits, with no more empathy or tact for live humans than for an illustration in Grey's Anatomy. And in a few cases, the subject is not even really something that's "wrong": What health-care reforms, for example, could easily resolve Pittsburgh pediatrician Helen Studer's dilemma of feeling bound to save a full-term infant whom she knows a birthing mishap has already rendered brain-dead?
But while a few of the essays are far less interesting than Studer's anguished account, the shortcomings of Rage and Reconciliation aren't so much literary.
One aspect of the book that needs a transfusion is diversity. The original Creative Nonfiction volume was compiled from a call for entries (competing for a $10,000 prize from the Jewish Healthcare Foundation, which Robson won). That approach might have limited Gutkind's options, and it might be just chance that 13 of the 16 writers are women -- three of whom are physicians, as are two of the three men. But it's more troubling that the prevailing voice here is that of the middle-class-or-wealthier patient. Only a couple pieces -- McDonald's, Skloot's -- make you feel the blood-pressure-cuff squeeze that a low income can put on the ill.
It would seem obvious to address the issue of access to health care, especially in a country where some 45 million people have no health insurance. But here the problem receives scant treatment. The closest the collection gets, perhaps not coincidentally, is in one of its best pieces. In "Burden of Oath," Linda Peeno contrasts two episodes. As a medical reviewer for a health-maintenance organization, she once won employer plaudits for denying a life-saving heart transplant. In her current job as a speaker and consultant, the Kentucky-based physician recounts the death of a 90-year-old man whom an insurance company apparently deemed unworthy of further existence.
Criticizing stingy HMOs is apt, but more importantly, Peeno's essay is the book's lone big-picture critique of the economic side of what she calls "our peculiarly American brand of health delivery, the only health system that rations care for the financial benefit of those who are supposed to provide that care." The notion of health care as a right is otherwise raised only once, and briefly, on an accompanying CD featuring actors reading three of the essays -- and then only by a member of the audience at an appended panel discussion. Universal coverage, the elephant in the room at any debate over health-care policy, is never mentioned by name. Neither is a single-payer system of the sort embraced by every other industrialized democracy.
Universal coverage might not solve many of the problems Rage and Reconciliation addresses, and no book could do it all, either. But in expanding the volume for re-publication, Gutkind might have better addressed more basic issues of access within the creative-nonfiction framework of first-person stories and imaginative journalism. The idea that all of us, and not just the sick, have something to gain might help inspire a real health-care revolution.