Life in the Balance: A Physician's Memoir of Life, Love, and Loss with Parkinson's Disease and Dementia.
By Thomas Graboys, MD, with Peter Zheutlin. 199 pages. Union Square Press 2008
Tales of heroic struggle against progressive disease inspire admiration while reminding us of our mortality. The Last Lecture by Randy Pausch, a computer scientist dying of pancreatic cancer, became a bestseller. Michael J. Fox's Lucky Man raised public awareness of Parkinson disease.
Life in the Balance is Thomas Graboys' firsthand account of living with both Parkinson disease and Lewy body dementia. His story is heartbreaking and cautionary, a reminder of how complicated and contradictory people can be.
Renowned as a cardiologist and communicator, Dr. Graboys practiced “old fashioned doctoring,” talking with patients at length and enlisting them as partners in their treatment. On the clinical faculty at Harvard Medical School and active in Physicians for Social Responsibility, he was also in line to become director of his medical group practice. In his mid-50s, he was at the pinnacle of his profession as well as a devoted husband, adoring father, and avid tennis player.
Then, in 1998, his wife of 35 years died of cancer. Soon thereafter he noticed some trouble with concentration, which he attributed to stress. He developed a slight tremor of the hands and was concerned about his deteriorating tennis serve.
“Being a physician was everything to me,” he writes, and he kept hoping his symptoms would go away. Progressive memory lapses, spatial disorientation, and micrographia were alarming, but the depth of his denial and disregard of the danger he might pose to patients was even worse. In early 2003, a neurologist colleague asked him in passing about who was treating his Parkinson disease, but he still avoided seeking medical advice.
When he finally consulted a neurologist later that year, as Dr. Graboys tells it, he was not given a definite diagnosis. Friends, family, and colleagues were reluctant to confront him directly, but his office staff, increasingly concerned, began to double-check his notes and prescriptions.
As a patient, Dr. Graboys wanted a caring physician in his own mold, remarking acerbically, “I am not a collection of symptoms to be managed.” But he acknowledges that magical thinking and maneuvering to avoid bad news made him “a terrible doctor to myself,” delaying diagnosis and effective treatment. In retrospect he found his own behavior “astounding, outrageous and foolish.”
One can only imagine the discomfort of the office meeting in 2005 when his partners told him he had to retire. Dr. Graboys is “confident I did no harm,” but he admits that he was unable to follow his own advice in dealing with an impaired colleague: “I would speak directly to the physician involved,” and “if necessary, I would speak directly to his chief and his family. The well-being of the patient has to be paramount.”
What leaps off the page is the combination of obsessive self-monitoring, secrecy, stubbornness, and pride. Are physicians particularly prone to react this way to illness? Faced with the loss of income, status, and mental acuity, would any of us have been different? Yet, once he retired, Dr. Graboys felt unexpectedly relieved. It had required enormous psychic energy to maintain his charade.
His concealment had serious personal ramifications, too. Dr. Graboys hid his problems from his second wife, whom he married in 2002, just as he had from the “macho, tough, competitive” world of Boston medicine. That betrayal of trust put serious strain on their relationship when he needed help most.
While distressed by tremor, shuffling gait, drooling, hallucinations, and nightmares, his considerable self-esteem was even more battered by his intellectual decline and loss of ability to communicate. Rather than emphasizing medication, he describes the challenges of losing control and independence.
Extra household help, a personal trainer, and psychotherapists for himself and his wife ease the family's burden somewhat. With his therapist, Dr. Graboys confronts his ongoing anger and special sensitivity to loss. He makes an excellent case for therapy, but this may not be acceptable or affordable for most people. Support groups provide less in-depth analysis but are certainly more available.
For all the insight he may have gained, neurologists will note some distressing and familiar blind spots. At the time of publication, Dr. Graboys still insists on driving locally, even after a couple of minor accidents, and no one seems prepared to take away the keys. Although he could take a cab or afford a driver, this bit of independence remains more important to him than safety. His account of getting lost on the San Francisco bus system with his four-year-old grandson is even more alarming, and he still tries to write checks despite illegible handwriting. Family members try not to infantilize him but have to monitor him closely, because he will not report falls.
In one particularly poignant chapter, his older brother, his daughters and their husbands — but not his wife — describe how his illness has affected them. Dr. Graboys calls their observations of his progressive dementia and diminished ability to communicate a “harsh reality check.” His family seems much more able than many to discuss thorny emotional issues, and he cherishes supportive friends who have dealt with personal tragedies of their own.
While Dr. Graboys doesn't want to be a burden or to be kept alive “with a mind that has been erased,” his discussion of end-of-life care is a disappointment. Despite knowing his prognosis, he makes no firm decisions while he still has the capability, stating that “no matter how much we intellectualize and plan for the day when a critical life-and-death decision will have to be made, when that day comes all bets are off.” Coming from someone who treated countless patients with end-stage heart disease, this is astonishing. Advanced medical directives may imperfect, but they can stimulate discussion and provide crucial guidance to families about the patient's desires.
The final chapter on a “life beyond illness” consists of advice, “simple and practical on the surface but not always easy to put into practice.” Much of this is repetition. He prescribes a management plan for illness and a list of goals for living, however modest, feeling that proactive patients do better.
So, who is Dr. Graboys' intended audience? Although he aims to provide validation and comfort for those afflicted with chronic illness, his book seems mostly cathartic for himself. Not all patients and families, especially early on, may be ready for such frank discussion. Dr. Graboys bravely chronicles himself coming apart, and his struggles with formerly automatic activities like dressing and simple conversation are upsetting and profoundly sad.
Students and house staff, who may have little personal experience, will learn a lot about the emotional impact of illness, something often neglected during hurried office visits. The book also challenges experienced physicians to rethink their approach to patients. Can neurologists do more to help people maintain dignity in the face of inevitable loss? Lurking in the background is the question of whether we ourselves could be realistic, yet hopeful, in the situation of degenerative disease.
As William Osler observed long ago, no two patients are ill in exactly the same way. Life in the Balance is one intelligent, sensitive, imperfect physician's struggle to come to terms with a tragic fate.