A couple days later, the bottom fell out. I was working at my desk when I began to doubt every single thing that I was writing. I was certain that I was already losing my ability to think, to put together a simple sentence. Later that night, lying in bed, I was gripped by a terrible, souring sense of dread, a feeling that everything in my life was useless, meaningless. I had never experienced anything like it before. I am a person of faith and optimism, at least when it comes to my personal outlook, but all that gave way before this wrenching, physical sensation of despair. This feeling came over me several more times during the week after my test. Nothing, not even the most soothing and optimistic thoughts I mustered, could ameliorate it. I wondered if this was what true, clinical depression felt like.
Then it would fade away and I would feel strangely exhilarated, just as one does when a fever passes. I learned to ride these moods out, just try to get through them, and soon they largely disappeared. I was, I suppose, building a new wall. All that brave confrontation, just to escape behind a new layer of denial! Nonetheless, everything did seem more intense, more edged. My moods were more mercurial, I was angrier, more sympathetic, even more apathetic about things—always aware that these very mood swings, too, were symptoms of Huntington’s.
I made predictable resolutions. I would live more in the moment. I would hone my life to the essentials; read more great books; stop wasting so much time on newspapers, the latest catastrophe from Africa or China, or the op-ed pages. Who had time for it? Instead, I would write and write and write, build a legacy of work.
Yet this soon created its own sense of panic. I had easily twenty, thirty, maybe more good ideas for novels, histories, screenplays—how would I ever get all that done? What I really wanted was to live like I always did, taking little care of myself, wasting time worrying over politics, or how the Yanks were doing, or even the banality of other people’s opinions. As a novelist I learned long ago to pace myself, building something day by day, rewarding myself along the way with all the sweet distractions of modern, urban life. I wanted my trivialities. I kept thinking of the title of that self-help book, something like Don’t Sweat the Small Stuff—and It’s All Small Stuff. But of course it’s the small stuff that we crave. That’s what gives us the illusion that life is infinite, the only thing that saves us from the terror of consciousness, the root of which is that uniquely human knowledge that we are going to die. My mother’s denial did indeed make everything worse for her, and at times it tormented those of us who loved her. But now I found her stubbornness, her desire to cling to the life she had known, understandable, even admirable.
I started to tell people about my test results, what they meant. This made my wife uncomfortable, but I couldn’t help myself. I had some kind of compulsion to tell friends, family, even professional acquaintances. I wasn’t sure why I felt this need. Was I trying to solicit their pity, their admiration? See how brave he’s being!
Probably. But I think I was also doing it out of sheer incredulity, or even as a cry for help. Here I am dying. Do something!
My friends duly praised my courage—as if I had any choice. They spoke about all the great things going on in medicine today. I nodded and smiled, told them yes, I would pursue every cure. But there are no cures, at least not yet, and I doubt that a nation bent on spending three or four trillion dollars on the grand task of making the Iraqi people learn to love one another is ever going to devote much more to solving my little brain ailment. For that matter, I can’t honestly say that my disease should have any priority over the likes of breast cancer, strokes, heart disease, or any number of other maladies that affect many more people.
All things considered, I knew that I had already had a phenomenally good life. Even when it came to the Huntington’s, I had been lucky enough not to live with the disease hanging over my head. I was never somebody who worried about death or thought about it much at all. My wife and I had fortunately decided not to have children, a decision we reached more or less by inertia over the years and which meant that, thank God, I didn’t have to worry about having passed this on to someone else.