Monday, October 31, 2011

Six months after we moved in together, Jillian and I became engaged. The next morning, we decided to go hunting for engagement rings.
"Let's check out pawn shops," she said. "It will be romantic." Her parents got their rings from a pawn shop. I was intrigued by the idea of saving money, but I thought, pretty quickly into things, that we would move from pawn shops to jewelry stores, maybe even on the way to the first place.
So we started at the nearest place, Mountain Man Pawn - an overgrown aluminum storage building in a run-down parking lot on the south side of town. Inside, an old man told us, "By the time you get to be my age, if you haven't worked up a good hate for each other you've done something wrong."
We drove all over town, talking about the old man with his odd candor and finally came back to Mountain Man for the ring, and picked up wedding bands there as well.
Later, Jillian called her parents to tell them the news. Her father answered.
"We're engaged," Jillian said.
He was quiet. "Let me get your mother," he finally said.
Jillian repeated the news to her mother and was met again by silence. "Oh my. That was fast," her mother said.
"We've been living together for six months, Mom," Jillian said.
"Don't you think you're rushing? I just wonder if you've thought this through," her mother asked.
"Why can't you just be happy?" Jillian asked.
I was in my office, working. But I could hear the agitation in Jillian's voice.
"What about kids? You're just going to give that up? You're too young to close that door," her mother said.
"I'm the same age you were when you were married," Jillian said.
"But this is different."
After 45 minutes of that:
"I guess the real reason is I can't be happy about you marrying someone who could die a horrible death or need you to take care of him. I think that before you get married," her mother said, "Cortney should get tested for Huntington’s."

"Don't hate them," Jillian said, later. "They're just worried. This is your decision," she said. "No matter what anyone says, even my mother, you have to decide. I'll support whatever you choose to do."
We talked about testing in noncommittal spurts. Mostly, we talked about her parents, wedding plans, politics, anything but testing.
After two days, Jillian called her parents. Her mother quickly broke into tears, explaining that Jillian's paternal grandmother was dying, and Jillian's father was on his way to Michigan to see her.
"Life's too short," Jillian's mother said. "Nobody knows when they're going to die. So if he doesn't want to get tested, he shouldn't have to."
What this meant was that I couldn't be mad at them for trying to force me into a decision. What this meant was that I had to make the decision.

When my mother was diagnosed with Huntington’s there was no definitive test. The gene that produces it was discovered in 1993. The test, at first, was enormously expensive and required multiple testings of family members for comparison, but over time, as more became known, the price dropped to around a thousand dollars. Huntington’s tends to manifest later in life. It is the perfect disease for procrastinators. My mother had three kids and was into her forties before she showed any symptoms. Her father likewise had three kids before he showed symptoms, and his mother was well on in years. This is the norm; symptoms tend to occur during the ages of 45-55, though they can manifest at any time, and my siblings and I had lived our lives as though in the moment of near-sleep dreading the buzz of the morning alarm. When we weren't concerned for ourselves, we worried about each other.
My brother was so sure he had Huntington’s that he never married, never planned for the future, and when he hit his forties, and the disease failed to appear, he suddenly found himself unprepared. He quickly married, became a stepparent and tried to make up for lost time. My sister took the opposite approach. She married young to a man with three kids, and struggled with the decision to have kids of her own and risk passing on the Huntington’s gene before finally giving in and having a son.
I wasn't sure where I placed on the family scale. I tended towards a pessimistic way of thinking, sure that I had Huntington's, but unsure what to do about it. The fear that I might have the disease had made my life swing like a pendulum. Some days, I felt I should live only for that day. What was the point in planning, preparing for the future? If I only had twenty years or so left, I had better live them for all they were worth. This meant that while my friends were settling down with mortgages, I was just starting college. And instead of paying for classes, I was using the loan money to travel.
Other days, I thought that if I didn't have much time left, I had better buckle down and try to achieve something worthwhile. So while those friends were starting careers, I was finishing up work on my first novel and recording demos with my band.
And when Jillian and I met, we settled into something I'd never really had before: stability. We made plans. We talked about children; we talked about careers; we talked about where we'd like to live. We built a mythology for our relationship by seeking out new and strange experiences that we'd both find rewarding and interesting. Instead of going to a movie, we drove around looking in other people's windows. Instead of playing golf, we planted a garden.
But no matter what, my mother's disease was always present, like an image in my peripheral vision that kept coming back.
At traffic lights, I wondered; what if I have it? In line at the grocery store, I pondered it: if I had Huntington's, the big if, what would I do? If my time is to be short, then I'd better do something worthwhile with it. At the fast food drive through, I thought: I'd better make it count.
It sounded good, and yet no decision seemed to be getting made. Jillian stood by during all of this, metaphorically, smiling supportively and trying not to scream.
I had just graduated college and was poised to enter graduate school to study playwriting at the University of Arkansas. I was taking a summer class on filmmaking and not working. And as I got further and further away from making a decision, I got more and more miserable. I began buying books I'd never read, movies I didn't even like, and blowing through my careful summer budget, just to keep myself entertained. I didn't know what to do with myself so I didn't do anything. I floated. I changed the subject. I talked about the weather.
A few weeks after our engagement, I received a letter from the bank. I was overdrawn. The money that was supposed to see me through the summer was gone halfway through the break. I drove all over town, putting in quick applications for a summer job, and then I sat and waited and thought, really thought, about the concept of a future.
Up to that point, I had parceled my life out according to looming deadlines. In nine months, it would be summer, in three months, school would start again. In twelve years, I would graduate with my high school diploma. In four years, give or take, I would graduate college. When I was a kid, I had waited for my father to get home from work. Now, I was waiting for Jillian to get home. All my life, it seemed, I had been waiting. At the Baptist church, they'd taught me that life is a dream and we wake into heaven. We just had to wait it out. When I worked, or even at home, I watched the clock, gauging my actions against the clock. All of these deadlines were tiny reflections of that giant deadline, the moment when I was sure I would wake from this dream of life into the nightmare of the future. All my life I'd been waiting for it, but now, with Jillian, I thought: maybe not. It was too delicate a bird to hold in my hand, fully formed, so I made the decision and didn't think about it anymore. When Jillian got home from work I told her it was time I got tested.

2 comments:

sloopie72 said...

Hi Cortney – I read the first part of this series just before coming across "Oubliette" by David Long in The New Yorker - a story that deals with HD. It was the first time I'd read anything about HD in a long time. I didn't know if "That's Alright" was fiction or non-fiction. Since it said "Part I" I just waited. I figured I'd find out.

Now that I know, all I can say is it had better have a happy ending, because I don't think I could bear it if it didn't. And I hardly know you.

(This is my clumsy way of giving you an e-hug)

Karen (and Zin, especially the ehug part, Zin is big on ehugs)

Glenn Buttkus said...

Incredible sharing, Cort. It seems
in this life we all have our cross
to bear. Never knowing my father
and coming to terms with health
issues and disability in my 40's
really puts one into an emotional
tailspin. Whenever you write of
your mother, it conjures up the
loss of my own; died of cancer
at 39 years old. Enjoyed your
glimpse of the past though;
thanks.