A year after we started the testing, Jillian and I were stuck in traffic thirty miles outside of Little Rock. We were supposed to be at the University of Arkansas at Little Rock clinic at eleven to get the results of my test. Then, we were supposed to go immediately to see our psychiatric councilor again. We lived several hours away, but this was the only place in the state that offered the Huntington's test. We hadn't moved in an hour, and it was nearly twelve.
The mood in the car was one of nervous delusion. Jillian was convinced we would get good news. I was convinced we would get bad news. Semis stretched in front of us, down the one open lane on either side of the interstate. Lines of cars intersected the interstate periodically, none of the vehicles moving. The smell of tar permeated everything. Workmen occasionally moved equipment as though trying to appear busy, and then stopped and stood around sweating and talking.
"I bet they go to lunch," I said.
"They better not," Jillian said. "I'm not waiting any longer. Don't see why they couldn't give us the results over the phone."
"That would be too easy," I said.
We were a year into what was supposed to have been a six-month testing period. The first clinic we'd gone to cancelled our initial appointment because their psychiatric councilor refused to work with them anymore. He disapproved of the fact that patients were allowed to leave the testing process without further psychiatric evaluation. We'd fought tooth and nail to have my mother genetically tested, which would have helped clarify the results of my test if mine was inconclusive. Her obstinate doctor strung us along for months, refusing to return long distance phone calls, leaving us on hold indefinitely, before we finally gave up. We'd only talked to an actual doctor once, and spoke with our 'genetic testing counselor' (Sara) only a handful of times.
Sara was an energetic redhead, eager to help us the two times we actually visited her office, but we got the feeling that we knew more about Huntington's disease than she did.
The testing process was hard on me, but it was equally hard on Jillian, who felt that she couldn't burden me with her fears and problems. The only mention made at any point of her needs during this process was by the psychiatric councilor, an odd man we met one time who simply asked her, "How are you holding up?" Before coming back to my mental health, before her eyes could even begin tearing up. At this point, we just wanted it to be over with.
There was no cure, no treatment. It was a win or lose situation. We'd spent a year eating blueberries and trying to go for walks as often as we could. As the testing progressed, we had found ourselves going out to eat because we were too drained to cook. We had both gained weight, and watched TV more and more. I had stopped writing and we both worked longer shifts. We had withdrawn from friends, and the mythology we had hoped to build for our lives was forgotten. We had both hoped that facing the dragon of this disease by undergoing testing would take away its power over us, but it had only made things worse. And as the months dragged on, we'd stopped talking about the testing, about our fears, about our plans. Until it was appointment time.
Sitting there, in the car, I couldn't help but think about the last time we'd made this trip, three weeks before, to have the actual test. It had been a simple procedure; they'd taken some blood and we'd been on our way. Before this, we'd spent a half hour talking to a psychiatric councilor. He was a hawk nosed man who stared at us until we felt like mice, and asked surreal questions to test my cognitive awareness.
"Where are you?" he asked.
"I'm in your office," I said.
"How did you get here?"
"We drove. We took turns. Oh, wait. Did you mean literally, 'how did we get here?' Cause we used Mapquest. I think we took a left on University from the interstate. I don't really remember. Or, did you mean, more in a philosophical sense?" I asked, smiling nervously, waiting for the talons.
"I'm going to tell you three words," he said. "I want you to remember those three words because I'm going to ask you about them later. All right? The words are apple, Ford, Ohio."
He stared at me for a moment and then scribbled furiously on his paper. I watched, growing more confused.
"Draw this," he said, passing it to me. He'd drawn a rough pentagon. "Don't lift your pen. Just draw it."
I drew it and he looked at it appraisingly before jotting something down.
A little while later, he asked me what the three words were.
"Apple," I said. "Ford."
"Do you remember the third one?" He asked. "It was a state."
"Arkansas?" I asked.
"It was Ohio," he said. "Do you know what day it is today?"
"It's Wednesday," I said.
"And the date?"
"Twenty-something," I said. "I don't know. But I never know what day it is. I mean, that's normal for me. "
I was terrified that I had failed the test. Each time he asked a question, I was more nervous, more afraid. The fact that the questions seemed so odd to me didn't help. I thought maybe they weren't odd questions, maybe I was just losing it. Maybe the Huntington's had already started. That could happen. Usually people manifested symptoms in their forties, but it had happened to children, and grandmothers. And the questions just kept getting stranger.
"Have you ever considered suicide?" He asked.
"Yes," I said. Jillian turned and looked at me.
"What happened?" he asked.
"I didn't do it," I said.
Finally, he finished. The psychiatric councilor told me that he thought I was okay to take the test.
"One in four people commit suicide immediately after getting the results," he said. "I'm telling you this so you are ready for it. I think it is imperative that you come here immediately after getting your results. You might even wait and open them here."
"Ohio," I repeated on the trip back. "Apple, Ford, Ohio."
I had started graduate school during the testing process and in order to see our psychiatric councilor and give a blood sample, I had missed my acting class. I was a terrible actor and was only taking the class because the head of the playwriting master's program in which I was enrolled felt that I needed to broaden my understanding of actors. I was the only graduate student in the class, but it was a mixed bag, ranging from a grandmother auditing the class for free to a transsexual who showed up, on the days he came, late, wearing a dog collar, acting his scenes in high camp.
When I returned later that week, the class was strangely quiet. The teacher, a graduate acting student, seemed agitated, nervous. He talked to us about "what had happened," never referring to it so that I had no idea what it was. But we must press on, was the gist of his speech.
"What happened?" I asked.
The teacher turned deer-in-headlight eyes to me. Another student told me that Todd, the transsexual student, had committed suicide over the weekend by overdosing on pills. He was found in his apartment. The grandmother suggested that we all sign a card, for his parents.
I hadn't really known Todd; I don't think any of us in class did. I had always been polite to him, or at least not rude. I'd talked to him maybe two or three times for longer than a sentence. That's all I could say, all most of us could say. After class, I waited to talk to the teacher. He was clearly not taking it well. I didn't know what to say to him that he didn't already know. I apologized for missing class, told him I liked the class; I said as much as I could for as long as I could and left.
Later, in another class, someone brought up the suicide. I said what little I knew about it.
"You look like you're about to start laughing," a classmate said, staring at me, puzzled.
"It's a nervous reaction," the professor said.
I don't know how I felt about Todd's death. Suicide had gone from an abstract thought to being the ghost in the chair beside me. I tried hard not to think about it, and when my classmate pointed out my strange facial expression, I knew that the psychic battle had spilled onto the visible plain. This lack of control seemed like the first step down a dangerous path. Stress, the psychiatric councilor had told us, could bring the symptoms of Huntington's disease to the surface. And what would I do, if I tested positive. What would I do?
When I was a teenager, I'd gotten into vicious arguments with my brother about this.
"I will go off somewhere, out in the woods or something, and shoot myself," I said. "If I had any balls, if any of us did, we'd go do the same for Mom."
"Well stay the hell away from me," my brother said. "If I get it, I want all the time I have to live."
"It's not living," I said.
"Just stay the hell away," he said.
I remembered my father and his brothers taking their mother out of the hospital, when she was dying, and taking her home. They'd organized it like a raid, one brother blocked off one hall, another a different hall, and my father carried her out so she could die in her own bed.
My sister wrote letters to Dr. Kevorkian, praising him for the work he did, for the battle he fought. Dignity was what he was fighting for; the reason my father and uncles had taken their mother out of the hospital, against the doctor's wishes, so she could die with dignity. Is that solace? It had to be. If I'd learned anything in life it was that.
We finally reached the clinic two hours late. Sara was waiting for us in the lobby. She led us to her office and, before we could even sit, told us that the test was negative. I didn't have it. Jillian cried, Sara cried, and I sat quietly, unsure as to how to process this information.
We were inside the clinic for fifteen minutes, then back on the road, back in the traffic. We never even considered going back to the psychiatric councilor. It was an unspoken agreement.
Jillian chatted manically in the car. We talked about kids, talked about buying a house. We made plans again and floated through the next few days, fat and happy, and finally settled onto each other one night and fought like dogs, letting out all the tension that had been building over the last year. When the dust settled, we were empty, and waiting to fill ourselves.
Over the next few months, it occurred to me that I had no plan for this happy ending. Like my brother, I had been so prepared for a devastating result that I didn't know what to do. I was like the old doctor in A Tale of Two Cities, unsure how to live without his chains. I had gone from thinking I had a certain future to being just as uncertain as everyone else.
I was also flooded with guilt. How could I live with myself if my sister became sick? How could I be happy after my mother had suffered so horribly? After the tragedy of my mother's life, I felt, on some level, that I deserved to suffer as she had. It seemed like the least I could do. But this feeling passed. The disease had already consumed my mother's life, I wasn't about to let it have mine.
This, I think, is the true tragedy of my mother's life: forty years overshadowed by fifteen. Trying to make sense of her life was like trying to hear a whisper in a room full of shouting. For me, she had always been the stranger dying in the other room. My earliest memories were of playing school with my sister, our mother reading Happy Hollisters books to us, but even then she was shaky and distant. And later, when she required a nurse, I remember stepping off the school bus and seeing my mother leaning on her nurse a little ways down the road, so as not to embarrass me in front of the other kids. When I was very young, I couldn’t go to the bathroom without her banging on the door, asking me if I needed any help. I couldn’t play without her sticking her head in every few moments to ask if I was okay. Though it bordered on smothering, she seemed to be trying to give us all the attention she could in the time she had. She wanted us to know she was there. She worried. She tried. She loved us. This much, I knew. In the end, isn't this all one could ask from a mother?