The Lonely Patient:
How We Experience Illness
The Lonely Patient: How We Experience Illness
by Michael Stein, M.D.
Morrow, 222 pp., $23.95
The most significant word in the full title turns out to be “we.” Although written in the first person, The Lonely Patient is an impassioned personal statement intended for the medical profession and the general public as much as it is a confession of “failure,” a kind of apologia for those whose serious illness – and death – prompted the writing of this extraordinary book. Dr. Michael Stein, a professor of medicine at Brown University Medical School, brings to his inquiry a lyrical expression and narrative drive more commonly associated with fiction than with nonfiction. No surprise, then, to learn that the eloquent author has written several award-winning novels (the latest, just out, is In the Age of Love). The Lonely Patient appropriates elements of creative writing as it explores what Dr. Stein calls the four emotional stages of terminal illness, an overlapping sequence that constitutes the journey each patient takes from relative health to what Hamlet alludes to as “the undiscovered country from whose bourne no traveler returns.” Dr. Stein describes these stages as betrayal, terror, loss and loneliness. Each stage gets a separate chapter and is linked to descriptions of conditions of actual patients with, respectively, chronic pain, cancer, surgical complications and HIV/AIDS.
Of all the main and minor characters evoked here, however, none stands out more than the author’s brother-in-law Richard, a sculptor, an irascible, larger-than-life, sardonic older presence in Michael Stein’s life, whose diagnosis of a rare sinus cancer—and eventual death—is the main motive for the writing of this book. Though he seems unduly harsh on himself, as he thinks back on his relationship with his sister’s husband, the fact that Dr. Stein confronts his behavior as an internist, relative and friend is reason enough to hope that this book receives wide attention. In an era of managed care and mismanaged or unmanaged patient fear – not to mention bookstore shelves clogged with paperbacks of soppy therapy—The Lonely Patient offers an impressive critical view of the medical profession. Its concluding paragraph is compassionate as it is sobering. Dr. Stein acknowledges the “reeducation” he underwent as he watched his chronically and acutely ill patients try to handle betrayal, terror, loss and loneliness. For the patient, “illness is as unshareable as a book read alone on the last train out of town.” We should all know this, act on this knowledge—“we” doctors, caregivers, relatives, friends, patients. We should all read this book before the train leaves the station. “Illness is never simply a technical problem to be solved. It is personal business. It involves unease and decent concern, jargon and gesture, but never should it include turning aside from need.”
Did Dr. Stein turn aside? He feels that he did, even if he was misled by youthful ignorance, medical training that urged him to keep his emotional distance, exhaustion or fear, rather than by a busy schedule or indifference. In this regard, The Lonely Patient, is itself a kind of surgery, a laying bare of the heart that should be part of all medical school curricula. If some sections seem repetitive, they should be regarded as incremental emphases, declarations supported by mounting evidence of how difficult it is for many people —including doctors!—to talk about illness. A recurring metaphor Dr. Stein invokes for the confusing and terrifying physical and psychological changes that attend those who are diagnosed with serious illness or debilitating pain is that of a challenging journey whose prospect renders patients mute: the country is unknown and far away, the map of the terrain is faded, the chance of returning slight and nonnegotiable.
Filled with a wealth of literary references, The Lonely Patient testifies to the benefit of immersing oneself in many disciplines. It was “probably the experience of writing novels that finally allowed me to recognize my failure,” says Dr. Stein, but it was also that experience, and reading widely in the humanities and social sciences, that caused him to reevaluate his role: “Doctors have a supply of emotions and insights about body and mind, and to offer access to this storehouse is the gift, the art of medicine, just as memories are the gifts we receive from loved ones.”