Stanford University, Palo Alto, California, United States
David Michener is a psychiatrist. He is also the father of three children, each of whom has a progressive, incurable neurological disease that results in loss of cognition, uncontrollable, involuntary movements, erratic emotions, and bizarre behaviors. The malady his children acquired is the result of a single dominantly inherited gene mutation. A parent with the gene mutation has a fifty-fifty chance of passing it on to each of his children. A child who inherits the malignant, mutated gene will get Huntington disease (HD), become progressively impaired over time, and eventually die of complications from the disease process.
David is divorced from the woman who carried the gene and unknowingly transmitted the fatal DNA; she died of Huntington’s disease after many years in a nursing home. His separation came before he learned of the disease in his wife’s family. As a Quaker, a pacifist, a conscientious objector during World War Two, if David had known, he would have neither left his wife, nor had children.
David’s children have been supremely unlucky. Each offspring entered life from the exit, got the wrong side of the coin. They, wanting to know, have all tested positive for the gene mutation. Knowing what is in store for them, how does David manage to get through each day without flagellating himself? How does he deal with guilt, anxiety, depression? Does he spend time maligning the magnet of fortune, so fastidious, always favoring the darkness? Does he wake and sleep and wake wondering where happiness was? Not David Michener, the father who moves through his tectonic life as if he had Virgil to guide him through purgatory.
My wife and I come to a gathering of the local Huntington disease support group, which meets in the basement of a local church. My long-time interest in HD is a result of the annual seminar on HD that my medical school humanities course sponsors. That seminar is run by Andrea Zanko, the brilliant genetic counselor at the University of California at San Francisco, who also leads this evening’s gathering of patients and their families. The group is relaxed, dressed in jeans, sports shirts, and is surprisingly happy. The mood is hopeful. A few moments after the start of the session, David Michener arrives, attired as a professional prepared to see patients. He wears a pale grey suit, white shirt, a gentle tie. My old Nike running shoes contrast with his polished black shoes. He is the epitome of a confident doctor, a psychiatrist.
I talk to him after the meeting, ask why he attends. He tells me about his children with a tender voice, without hesitation. Dry, calm as an oak on a windless day, David tells me that he has three children with HD. I could not imagine, under that avalanche of despair, telling the story without tears. He is eighty-seven, looks sixty; standing, his spine straightened by rigid inescapable memories, he works yet as a volunteer in a group therapy session.
Now 56, his daughter Katherine, formerly a physician, is burdened by episodes of explosive anger and depression and resides in a nursing facility. His older daughter, Teresa, 58, is troubled by abnormal movements and loss of memory, but still manages to write for a local paper. His son Jacob, 63, has retired from his occupation as a carpenter because of tremors. None of the children have had offspring. David’s children have developed HD somewhat later, which allowed them to have productive lives. Now they rely on Social Security disability payments and face an uncertain future. Their mother had a clinical diagnosis of HD at 52 (1972), and her symptoms progressed for twenty years before she required nursing home care. She died at age 77 while residing in the same nursing facility.
How can Michener not be dysphoric, melancholic every hour of every new sun? I ponder to myself, “You who have helped hundreds of patients resolve their marital problems, guided many to a better relationship with their children, eased men and women through loss and phobias, you must bear this unhealing ulcer, this gnawing at the gut, brain, heart.” David, an astute physician and a practicing psychiatrist, realizes the implications of Huntington’s disease. He knows the prognosis, supports his children financially, stays in touch, attends HD meetings with them. Others would have become progressively more despondent and withdrawn. But David is accepting and is grateful for his children’s accomplishments, for their love and support for him, for each other. His astonishing attitude is: “I’m glad I have had them and hope that I can share effectively in meeting the many challenges of HD yet to come.”
Where can his calmness and acceptance come from?
Perhaps, growing up, he became accustomed to hardship. David was reared in the Mid-west as a farm boy, a life without amenities. Long walks to school and the work of farm life—heavy-hauling water, firewood—characterized his days. Living without electricity, indoor plumbing, he ended up at Harvard Medical School, trained to practice psychiatry. Does being a psychiatrist help? Does dealing with the pain and suffering of others, soften, immunize him from his own burdens? David neither accepts these explanations, nor does he deny reality, for from the beginning he has been realistic in viewing this awful disease in his children.
Of course he has been distressed as each child tested positive, but he does not need psychotropic drugs, denies a clinical depression, and has never considered suicide. He has no anger and doesn’t know with whom to be angry. Keeping busy helps; he volunteers as a staff psychiatrist in a County Mental Health Clinic and records books for the blind. As a Quaker and a Humanist he takes solace in attending Unitarian services. His wife of thirty years, Dorothy, and a few friends are his support system. David, in facing adversity, reminds all doctors of Sir William Osler’s Aequanimitas. He is an admonition on the advantages of calmness to both patients and physicians.
LARRY ZAROFF, MD, PhD has had five careers following his residency and two years in the U.S. Army Surgical Research Unit. He focused for 29 years on cardiac surgery, including a stint as director of the cardiac surgical research laboratory at Harvard. There his work centered on the development of the demand pacemaker. He spent the next 10 years concentrating on climbing and did a first ascent of Chulu West, a 22,000-foot peak on the Nepal-Tibet border. His third life has been at Stanford, where he received a PhD in 2000, and where he teaches courses in medical humanities. His fourth career has been as a writer for the New York Times science section. He now works one day a week as a volunteer family doctor. He has received awards as the outstanding faculty advisor for the Human Biology program and in 2006 was honored as Stanford’s Teacher of the Year. He also serves on the editorial board of Hektoen International.