“I don’t think you do,” she said.
But her assurance was based on wishful thinking, or the sort of baseless conception one often has about someone else’s life. My wife didn’t want me to have the disease, and she thought of me as a lucky person, somebody who just wouldn’t get such a thing. Yet none of this mattered. In reality, unlike fiction, people’s lives don’t run according to some overarching narrative. We never suspected this disease was in my family before my mother was tested, we didn’t think of ourselves as shadowed by some sort of gloomy, gothic fate. But nonetheless, here it was.
I kept surreptitiously doing my little tests. Should I forget me, may my left hand lose its cunning....
Every step of the way, meanwhile, my mother’s denial only made everything worse for her. It now meant the dissolution of the life she had made with Larry—the quiet days in retirement they loved to spend fishing or reading and watching the news together in the evening; going to their favorite bakery every Sunday morning. None of it was enough to appease what was going on inside her brain. She wouldn’t stop sneaking drinks, wouldn’t keep taking the medications the doctors prescribed to control her moods. We would have been happy to let her drink if that had helped her, but the alcohol only stressed the brain and served to dilute the effects of the drugs. My mother now demanded almost constant attention to keep her entertained, to keep her from wandering into disaster. Eventually Larry told us he wanted out. They had been married for 21 years, and my mother had nursed him through a heart attack, cancer, and occasional bouts of epilepsy. But Larry, an émigré from Middle Europe, had seen both the Nazis and the Communists march into his life, and he knew when to head for cover. I couldn’t blame him. It’s an enormous burden for any one person to take care of a Huntington’s victim, particularly someone who is a senior citizen himself, and he had been dealing with it for a decade. Pam and I hired more lawyers to negotiate the divorce, the sale of their neat little house, the overwhelming thicket of bureaucracy that determined where and how she might live now.
Pam managed to find her a nice studio apartment in an assisted-living facility in Beverly, Massachusetts; a converted high school with the pretentious name of “Landmark at Oceanview.” (Just what was the “landmark”? The last leg of the voyage before you ease into the good harbor of death?) There were big school windows that brought in lots of light, and bright, cheery carpeting, and a diligent staff to make sure that she took her pills and to cook her meals and do her laundry—all tasks that she was having increasing difficulty performing.
My mother’s denial tormented those of us who loved her. But now I found her desire to cling to the life she had known understandable, even admirable.
Personally, I wanted to shoot myself every time I set foot inside the place. My mother, on the other hand, thought it was unbelievably “posh,” the sort of home where she had always dreamed of living.
Meanwhile, my father, whom she had divorced nearly 30 years ago, came east with cinematic notions of getting remarried and taking care of her. He disregarded almost everything we told him about Huntington’s and instructed her that she should just try to concentrate on holding her limbs still. Before one ghastly family dinner in a restaurant, he let her have a drink, then tried to cut her off. When his back was turned for a moment, she calmly snatched up his full wineglass and downed the contents in one swallow. I saw his eyes widen. My mother spent the rest of the meal barely able to speak, rolling her head back to try to get food down, until we made her stop out of fear she would choke to death in front of our eyes. My father fled back to his apartment in Hollywood. Good-bye, Golden Pond.
I was determined by this time to face the disease head-on. If my mother had made everything worse for herself by remaining in denial, I would throw it off. I would take whatever medications were necessary, volunteer for whatever experimental programs there must surely be. I convinced myself that this was a purely practical idea. Why go about looking for cures or ways to ameliorate the effects of the disease if I didn’t have the gene? Looking back now, I think my decision may have been more emotional than anything else, a desire to know this and be done with the uncertainty. I told myself I would be stronger than my mom, and take whatever I was given. Early in 2007, I set up an appointment at Columbia University’s HDSA Center for Excellence, located up in Washington Heights.