- When Illness Goes Public: Celebrity Patients and How We Look at Medicine
In these histories of 12 famous illnesses—not all of them in initially famous people—Barron Lerner weaves three common strands. The stories of the patients are told with great sensitivity, objectivity, and honest attention to the realities of the effects of desperate, mostly lethal, illness on patients, families, and friends. The stories of the illnesses and their treatments are carefully researched and presented in lay, but medically correct, language. And Lerner brings out the stories of the stories—how scraps of information, or sometimes no information, can grow (or be made to grow) into the grotesque distortions in newspapers, movies, television, and recently the Web, that come pouring forth with detail and evidently some relish on the part of the tellers.
Where there are positives, such as the impetus to establish a foundation to study some illness or the closeness that approaching death can bring to families, Lerner brings it forth. Negatives, such as gross invasions of privacy at intensely personal times, or serious breaches of the public's trust, get the same careful attention. Throughout, the professionalism of the historian is just under the surface until the reader, expecting another chapter, suddenly finds 40 dense pages [End Page 295] of footnotes and a meticulous index. Much is missing from or grossly distorted in the public record, often because of deliberate distortion by patients' representatives or the press (and less often, in these stories, by patients).
Most of the stories are not pretty, but then serious illness and death is generally not pretty. Accounts of heroism, stoicism, cheerfulness in the face of adversity—the whole stiff-upper-lip business fed to the public, are often right at the beginning, but mostly wrong at the end. Famous illnesses in famous people are just as devastating as the run-of-the-mill illnesses that will affect each of us at least once.
Lerner notes that the "cases highlight, among other subjects, doctor-patient confidentiality, death and dying, medical errors, consent for experimental treatment, and the question of who—patients, families, or doctors—should make decisions at the bedside." He also notes that "it was often the ordinariness of famous patients—and their loved ones—that made their stories so compelling for nonfamous Americans confronting the same medical and emotional issues." He has picked his cases well for making these points, but the stories illustrate much more.
Lerner begins with Lou Gehrig, he of the eponymous disease. Here Lerner sets the pervasive tone of the careful historian, noting the degree of confirmation that is justified for each part of what is often and necessarily a collection of potentially biased perceptions of his principals and sources. Many questions cannot be answered at this late time. When did the disease begin? What did Gehrig, his wife, his teammates, and others think as progressing disease caused him to become more and more clumsy? What treatment did he receive, and how much did it help? What did Gehrig himself understand about his condition? This is also the starting point for a running account of how public records and perceptions of famous illnesses and famous patients have changed over some 75 years. Secrecy and a reluctance to speak even when facts are available have, over time, diminished greatly. Public coverage of illness generally, of famous patients, and of medical research (much of it not meaningful "progress," despite the breathless tone of news stories) has increased sharply over the intervening decades. Despite the media frenzies we still sometimes see, that is surely a good thing.
Jimmy Piersall's struggle with bipolar disorder was long attributed to high spirits, high energy, or high jinks. It seems that the news media and the public simply could not believe that a highly successful baseball player could have a mental illness. Piersall has published his own story in a major magazine article, a book, and elsewhere, so we know more abut his illness and treatment than we do about Gehrig's decline. As Lerner notes, "Piersall's decision to go...