MY MOTHER'S brother, Uncle Paul, died when I was in 12th grade. While my mother was away at the funeral, my father took me out to dinner in Beverly Hills and tried to tell me about my uncle's illness--all my uncles' illnesses. My mother's three brothers had the same rare disorder, he said. It was hereditary: Huntington's disease. Then, perhaps fearing to tell dire news to someone so young, he assured me that our family would be fine.
Five years later, in 1968, I was vacationing in France when I received a phone call from my father asking me to come home for his 60th birthday. I was suspicious; my father was not sentimental about birthdays. He met me at the airport; my sister Alice arrived shortly.
He took us to his apartment--by this time my mother and he had divorced--and told us a story. It seemed my mother had been on jury duty in downtown Los Angeles. She was a fastidiously neat person, well-dressed and law abiding. She rarely drank. Yet a little before 9 a.m., as she was walking from her car, a police officer stopped her. "Aren't you ashamed of yourself, being drunk so early in the morning?" he yelled. My mother's world dissolved.
As gently as he could, my father finally told us the truth about the secret so long hidden in my mother's family. Mother was dying of Huntington's disease. It was genetic; Alice and I each had a 50-50 risk of having inherited it. There was no test to determine if we had the gene--only time would tell. If we had it, we could pass it on to our children.
I remember very little of the conversation. Just that my mother was dying and that I had decided I should not have children. I remember that we talked in my father's bedroom and that we all hugged each other. I know now that my father was terrified that Alice and I would give up our studies in the face of this monumental uncertainty. He says we told him that a 50% chance to be healthy wasn't so bad. We don't remember.
ABRAHAM SABIN must have been ill when his youngest child, Leonore, was born. When she was 6, he went to live in a state hospital on Long Island. Seven years later, at age 55, he died. Leonore heard the doctor say he had Huntington's chorea (as it used to be called). She went to the library and looked it up. Huntington's chorea, she read in a medical text, was a fatal hereditary neurological disease that destroys the mind and body, causing its victims to writhe uncontrollably, constantly. There was no treatment. The text went on to say, incorrectly, that the disease afflicted only men.
Leonore Sabin was my mother. When she was 15, she went to college, the only one among the children in her family to have done so. Her brothers, Paul and Seymour, started a band that played at the Tavern on the Green and the Hotel Delmonico in New York City. Her oldest brother, Jesse, was a salesman. But Leonore--with her proud brothers' financial help--earned a master's degree in biology, with a specialty in genetics, and taught high school in Harlem. In 1936, she met attorney Milton Wexler, who would become her husband and my father.
In 1939, with my mother's encouragement, my father left the law to earn a Ph.D. in clinical psychology. He became a psychoanalyst and joined the staff of the Menninger foundation in Kansas, where he researched schizophrenia. I was born in 1945, three years after my sister. My mother immersed herself in caring for us. Nothing much disturbed our lives until 1950.
That year, rumors ebbed from New York that Jesse, then 48, was acting oddly. My uncle Jesse had entranced us with fabulous tricks--spinning coins around his fingers and making them magically appear out of his ears, his nose, his pockets. But now the coins dropped to the floor while his fingers danced and twitched.
Paul, age 44, was also having balance and memory problems, and Seymour, 43, had "abnormalities." Huntington's was diagnosed at the same time in all three brothers.
The news was catastrophic. My father had known nothing of the disease in my mother's family. Believing that it only attacked men, my mother had never mentioned it. (I am certain she was also warned to keep it a secret if she wanted to marry.) When my father checked into it, he learned men and women were affected equally.
My mother subsided into depression. My father took action. He realized that he had to support his brothers-in-law financially and plan for the eventuality of illness in his own family. We left Topeka, and he established a private practice in Los Angeles.
When I was little, I adored my mother as someone who gave me unquestioning love and warmth. But as I got older, I knew that something was vitally wrong. She was sad, silent, listless, vague. It was as if some dark subterranean river was taking her away from me. In retrospect, I do not know if her decline was psychological, neurological or both. Perhaps the ominous gene was already beginning to take hold.