Double Helix (8 page)

I love this, I thought. I love being an adult.

I was so happy that it even crossed my mind to try to talk to my father, to let him know how good a decision this had been. But there was no sense tampering with the silent truce at home. No, it was enough that my father had wordlessly agreed to just let me do what I had decided to do. I wouldn't ask for more—wouldn't risk more conversation—and, maybe, neither would he.

If I also kept wondering what my father was concealing about Dr. Wyatt, what he had against him, I didn't let myself dwell on it. I was well practiced in not dwelling on things . . . and despite my father's denial, I continued to believe this had something to do with my mother.

I cleaned out rabbit cages with zeal, and created a new computer report that sorted the historical data over animal generations and was easier to read.

“All this youthful enthusiasm,” Larry said to Mary Alice. “It will wear off. Please, tell me it will wear off.”

The only thing keeping the job from complete perfection was the fact that I hadn't seen Dr. Wyatt. I routed my steps past his office three or four times that week, but his door was always closed, and I didn't hear from him.

I tried to reason away my disappointment. He was a busy man, and he'd already done so much for me. It was ridiculous of me, juvenile, to have expected anything more, no matter what he'd implied about seeing more of me, having more conversations, even—did I dare hope for it?—acting as a mentor.

Judith Ryan in Human Resources made that perfectly clear on Friday afternoon, when I went there to drop off signed employment forms and to watch a video for new employees about retirement savings and stock option plans. On my way out—even though I knew better—I stuck my head in her office, said a tentative hey, and waited for her to raise her cobra head. Which, eventually, she did.

I'd been planning to be offhand and casual, but under her stare it was not possible. “Remember me? Dr. Wyatt brought me down here to meet you? I'm working with Larry Donohue now. I just started this week . . .” I had an impulse to add that it turned out that Larry liked to make jokes about microbes, but managed to restrain myself.

“You have a question?” said Judith Ryan.

“I was just wondering if Dr. Wyatt had left a message for me down here. Welcome to the company or something, or—or maybe he wants to have lunch one day and couldn't find me . . .”

“I assure you that if Dr. Wyatt wants to see anyone who works here, he can find them.” Without waiting for a response, she turned and reached for the lower drawer of a file cabinet.

I slunk away.

And then it was Saturday. Nursing home visit day. And yes, I know a good son would have gone daily, but I couldn't bear to, lately. I had hit some kind of emotional wall last winter, and couldn't make myself visit her any more often than once a week. My father could have insisted, and we both knew it. But he did not. He said it was my decision. In a secret, irrational part of my soul, I hated him a little for that. I hated him for it - every time he went to see my mother, while I went to Viv to hide.

If Viv ever met my mother, she—even she, even sweet, generous, intelligent Viv—would stiffen in horror and revulsion.

“Hello, Mom,” I said. I found her with an aide on the airy screened porch of the nursing home. She was sitting in the big padded expensive wheelchair that protected her somewhat as the muscles all over her body and face twitched erratically. “It's a beautiful day,” I said with that falsely cheerful note in my voice. “The lilacs are blooming. There's a big set of bushes just outside. They smell incredible.”

I pulled out the three-ring binder that I'd retrieved from her room. I opened it to the laminated page of photos of me. Me as an infant; me as a toddler; me at ten, twelve, fifteen. Beneath the photos we had printed my name in large letters. I held the page up before her. “Eli,” I said. “It's Eli visiting you, Mom.”

I had no idea if she recognized me, or the photos, or the word
Eli
anymore. I didn't even know if she'd recognize the page of photos of herself.

“She's just been unfortunate,” the neurologist had told us. “The—” He had paused for a second, searching for a word other than
insanity
. “—final deterioration associated with Huntington's disease doesn't always happen this rapidly.”

I remembered staring at him, wondering if it would actually have been better to have more years with my mother in which the so-called early stages of HD dominated our lives. I remembered something I'd read in the HD literature.
Intellect is not affected in the early stages, only access to the information
.

Better or worse, to have things happen so fast with her? Better for her, worse for us? The reverse? I didn't know.

Or maybe I did. Maybe I was glad she couldn't live with us now. Maybe I was glad it would be over—relatively—soon. Weeks, or months, at best.

I knew I was glad that her rages had slowed and softened, becoming sad rather than dangerous. Glad that, because of her total inability to keep her balance, she could no longer walk at all. Glad even for the stupors she fell into now, in which she was totally alien, totally unreachable.

Evil thoughts. I know. I know.

I know.

The mass of twisted muscles that was my mother twitched and jerked beneath the soft blue cotton wrap dress she'd been put in that day.

“Shall I leave you two alone for an hour or so?” asked the aide.

“Okay,” I said, as I always said, even while I wanted to scream
no
. “I know where to find you if I need you. All right if I wheel her out into the garden?”

“Good idea,” said the aide. Her name was Patty, I recalled as she walked away. It was too late to use the name to her, of course.

I could never easily remember the names of anyone who cared for my mother, even in the early days, back when we lived in a big house near Harvard Square, back when my mother was only experiencing clumsiness . . . then having weird, frightening mood swings . . . and walking so oddly, as if she were drunk. Then, one time, she pulled every glass out of the cabinets and threw them violently at my father and me.

I was thirteen.

After that, a nurse had moved in with us for a while, until a nursing home could be found. I could never even remember that live-in nurse's name. Felicia? Francesca? I had some kind of mental block about it.

Unless the memory problems were an early symptom of HD in me. Early onset or juvenile HD. It wasn't supposed to happen so early, it was highly unusual, but . . . it could. It was possible.

In my regular life, I tried not to think about it, but when I visited my mother, it was impossible to escape the disease's shadow, its questions. I even sometimes believed that I could tell that the nurses and aides and doctors were thinking about it as they looked at me. I could hear their voices, whispering.

Imagining their voices, imagining what they were thinking—knowing that it was really what I was thinking myself, the beginning of what I was thinking, deep down, deep down in the places I didn't want to go—made me feel . . . well. It made me feel insane.

I thought about my father's HD-negative test letter. Someday I would ask him about it . . . someday. I found that I was not feeling so angry about it anymore. He, like me, like my mother, had been at risk. Now that I had absorbed the shock of that, it was easier to accept. Maybe their vulnerability and uncertainty about the future had been something he and my mother had shared, something that had made them feel closer to each other, love each other. Maybe it was why he had been able to remain with her and take care of her when she began to be symptomatic. Maybe, for my father, it had been,
There but for the grace of God, go I
. I could respect that. I could respect his privacy and his choices—even if I didn't yet know why he'd made those choices, or even why he'd used Dr. Wyatt as an intermediary when he took the test.

Maybe it was easier, too, to accept others' actions if you believed, as Dr. Wyatt did, that there was no free will.

My head cleared a little in the open air. I wheeled my mother down the path into the garden. Pushing her chair was good; I felt active, and I didn't have to look at her much as I talked. I told her the plot of a movie I'd seen on TV the other night. I told her about a new building, a skyscraper, that they were putting up in Boston. She used to be very interested in architecture.

I didn't say anything about my father to her, or about Viv, or about me. I didn't mention my new job, or Dr. Wyatt, or anything real in life. What was the point? What was the point of pretending that Ava Louise Lange Samuels was someone who meant anything in my day-to-day life?

Nowadays she was kept very much in a drugged state anyway.

I parked her wheelchair next to a bench and sat down beside her. I took out the three-ring binder again, planning to open it to the page of pictures of food. For a second, as I flipped through the binder, I saw the page of pictures of her when she was well, when she was beautiful.
Ava,
it said at the top of the page.
You,
it said at the bottom. In the middle was a picture of her on her wedding day—and one of her holding me on a bicycle. My first two-wheeler. She looked very serious. I could even remember her explaining the principles of propulsion to me.

I found the food page.
Sandwich. Pizza. Chicken. Cookie
.

“What do you think?” I pointed to the picture of a slice of chocolate cake. “Should I run over to the bakery and get some cake for us to have after lunch?”

I watched her face closely. I thought she nodded, but I might have imagined it. It hardly mattered, though. I was only pretending to be a caring son. I was not.

I wished she were dead. I wished she were no longer suffering. I didn't know anymore if I wished this for her sake, or my father's, or my own.

“Terrific, Mom,” I said. “Cake it is.”

AS USUAL, AFTER leaving my mother, I began to run the three miles home rather than take the bus. Passing one of the middle schools, though, I got lucky: A bunch of men in their twenties were playing basketball on the playground court. I joined them for a while, and I must have been even more agitated than usual after a visit, because for once I found myself playing nearly as aggressively as I could. One of the guys fell backward onto the asphalt when I jumped in front of him to snatch the ball.

For a second I thought he was really hurt—there was a bemused look on his face. But it was okay; he got up and laughed and asked me where I played college ball. “I was a guard at BC,” he said with a proud little jerk of the chin. But then, just as I opened my mouth to say that was cool, he added quickly, deferentially, “But I wasn't a starter.”

The other guys had gathered around. They were regarding me with interest.

“You're a center, right?” said this guy. “Where do you play?”

The back of my neck was prickling with warning. All I'd wanted was a pickup game. A little exercise. A little forgetfulness. I looked around at the group of men. They seemed assured, confident—young lawyers and medical students and computer guys and businessmen, I guessed. Well-educated, healthy, well-off; the world open before them.

I thought of the basketball coach at my high school; he'd bugged me pretty much continually, freshman and sophomore year. But I kept telling him no and finally he gave up.

“No,” I said easily to these guys. “I'm not in college. I don't play for anybody. I just like a casual game now and then.”

There was a pause. Then: “Oh,” said the man who'd fallen, a little over-heartily. “Well, what a shame. I mean, you're a natural, and when you think of all those scholarships, it's just too bad . . .”

I shrugged. I dribbled the ball, backed up to pass. “Right. Let's go, okay?”

We got back into it. I was more careful now; making sure to pass the ball often, jumping less, not dominating the game. At the end, they asked me to come back next Saturday and I smiled, shook hands, said maybe.

But I knew I wouldn't. I think they knew, too. I think they were glad to see me go.

I started walking home again.

Much as I liked playing team sports, I usually just didn't. Somehow things always got strange.

I remembered way, way back, when I was six or something, playing soccer. My realization that the other kids made mistakes—and that I didn't. And the way people began whispering, looking at me. The admiration and anxiety of the other kids. The interest from the coaches and the other adults. I ought to have liked it, maybe, but I didn't. I couldn't. Little as I was, it made me afraid. Somewhere in me, I thought it was a bad idea to draw too much attention. To have people watch me too closely. And so one day I told my parents that I didn't want to play sports anymore.