“No matter what the result is,” my genetic counselor warned me, “nobody is the same person they were when they walked in here.”
I was pretty sure that if the results were negative I would be the same person I was in about five minutes. On the other hand, the 50-50 chance that I had the gene had already begun to unravel any peace of mind about my future. Bravado or not, I had to know. I had them draw the blood. They told me it would take two to four weeks for a result, depending on how crowded the lab was. No matter what the verdict was, I would have to come back to the clinic for the counselor to tell me in person.
During my trips to the Columbia Center, Ellen and I would sit in the plain, institutional waiting room and watch other outpatients coming and going. Some displayed no outward signs of having the disease; others clearly had the telltale movements. Some of these people carried themselves with remarkable bravery, others were so young that it was almost unbearable to watch them. I knew that, in a very short time, I would either walk away and never see them, never see this place again, or that I would join their small fraternity.
The two to four weeks that I had to wait seemed to stretch out like a lifetime—in the best sense of the words. I put the possibility of having the gene out of my head again, and was more sanguine about my chances than I had been in months, still buoyed by the revelation that all my twitching had been, so to speak, in my head.
Only one afternoon, while I was working in a library, did the full understanding of what I was doing sneak up on me. What if it really is positive? I thought to myself, out of the blue, and I realized that I had no answer. I was stepping over a cliff, into a state of mind that I had no real way of even imagining. I quickly went back to my research, shutting this idea safely away again behind my own walls. But it was still there.
“Once you know,” the clinic’s counselor told me before I was tested for the mutant gene, “you can’t not know.”
When the call came two weeks later to set up my appointment, I wished for more time. I had two days to wait. I joked with my wife that our appointment was on an auspicious day—the anniversary of Hitler’s invading Russia. But I also couldn’t help wondering, “If it’s negative, wouldn’t they tell you over the phone? I mean, even if they say they won’t? Just to give you peace of mind, as soon as they can?”
“No, they have a whole procedure,” my wife insisted. “It’s going to be fine, you don’t have this.”
“But I’m just saying. Wouldn’t you tell the person? Wouldn’t it be sadistic to let you wonder for the next two days if the news was good?”
“It’s a procedure!”
We took the subway up to the center and got there a little early, seating ourselves in the waiting room again. Almost as soon as we arrived, my genetic counselor came out to see us—and we had our answer. When she walked into the waiting room we could both see that tears were welling up in her eyes, and that her mouth was set in a tight little smile, like someone trying to pretend there’s nothing wrong. It was like being on trial and having a jury come back that won’t look you in the face. After that, it was all over very quickly. The counselor sat us down in her windowless office and told us at once that the number of my CAG repetitions was 41—one number higher than my mother’s. I had the defective gene, and my brain, too, would begin to die.
I can’t say that I was immediately stricken or horrified. I didn’t even feel as upset as I have sometimes when an editor hasn’t liked a manuscript. It felt, as bad news often does, as if I’d known what it was going to be all along. Outside, it was still a sunny early-summer day. We got back on the subway. Ellen tried to be consoling, but I wasn’t in need of any, not just then. What was there to say? When we got home, I got a call from a podiatrist wanting to move up an appointment for a minor foot problem I was having. I hustled over to the East Side and there I sat, in another doctor’s waiting room, not an hour later. It all seemed unreal, like some weird simulation of what I had just been through. I thought about how giddy I would have been feeling if the results had been negative. I felt like blurting out the news to anyone I encountered, I just found out I will get a fatal disease. But I didn’t. The doctor prescribed some egg cups for my shoes, and I went home.