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Living with the problem you choose
I’m 22, and I’m unsingle.
I’m supposed to love me. Check. Love him. Check. Then no more single. It’s math math math.
I wasn’t always frozen. I used to have more search. I wasn’t always “unsingle.” I wasn’t always a 100 percent undiagnosed Huntington’s disease patient.
I wasn’t always stuck on the word chance.
Like, what are the chances?
What were the chances that volcano in Iceland, named Eyjafjallajökull, would erupt for the second time the week I was trying to get back to home-base England during my junior spring abroad. From Rome. Ash clouds seeping through the atmosphere across Europe. Planes grounded. People stuck in between.
My junior spring.
I knew my mom was sick but I went anyway. I was 20. My mom had been sick for a long time, but I’d only known about the Huntington’s for two-plus years (I hate counting).
Going abroad meant seeing things I’d always heard my mom talk about. Side trips to places like Salzburg.
There was a lot at stake. A lot of crazy dragged overseas. A lot of black-hole feelings.
Genetics isn’t about deserving. So those people can stop feeling like they are questioning “God” in the right way, saying, “He works in mysterious ways,” when in fact we’re staring at a way that he works in exactly proportionate probabilities. In this case, Huntington’s disease, we’re working with a 50-50 split. The gene that causes HD is dominant. That means that each child my mother has carries a 50 percent chance of also having this incurable thing. In our case there are four candidates: My two brothers. My little sister, Angela. And me. And please, whatever you do, don’t give me the “sometimes bad things happen to good people” line. Because we are not “good people.” We’re just people. It’s my mom, me, my sister, my brother, my other brother, my dad (but he isn’t at risk here). And “we,” the people we’re talking about here, don’t actually use the word “deserving.” I’m not saying there aren’t times when my mom hasn’t been severely depressed (which happens to be a symptom of Huntington’s disease). Like, for instance, the time she asked what she’d done to deserve this thing. But that was around the same time that she stood outside our house in the middle of the double-yellow-lined road, with my brown-haired, freckled, big-hazel-eyed 7-year-old sister watching from the bedroom window before school, and begged for someone to end her life.
Maybe my mom was thinking about “deserving,” but she was also doing things like that.
We don’t talk much about that time. How she acted was a symptom. It can be treated (luckily) with drugs. Also, we don’t talk much about genes. When I have a questions, I email premed kids I knew at school, making sure I understand my chances. My siblings’ chances. If you ask the question a different way, maybe you’ll get a different answer. Maybe this is my way of extending the conversation, bringing others in, making more people uncomfortable.
Grandma Marcia, my mom’s stepmom, always told me that if everyone put their problems in the middle of the table and they each got to choose which ones they would keep for themselves, everyone would end up picking the same ones they started with. So here we are.
I’m a patient for something we don’t know. And I don’t know if I’m a patient.
Is anyone surprised when I can’t stay tied to one thing?
People say, You are what you are.
The cereal box says, You are what you eat. Girl, you’re worth it! Worth what? Worth something in life. How can you say what makes a life worth living?
How prepared can you be to find out the $5,000 life you thought you’d been saving up for years, earning interest and thinking, Wall Street better not sear my solid-money-life into something I don’t want, actually turns out to be a $3 life that no one wants?
So what is this thing about testing?
It goes one of two places, equal shares likely. It’s a fairness game really. In all fairness.
It’s a question of how many letters. CAG. On chromosome 4. And 4 has always been my lucky number.
If I get tested, I’ll get a number: 0 or 100.
Sometimes the name of a thing is more frightening than the thing itself. Like 9/11. Maybe someday, somebody will find a word for the gaping tear that day left. Numbers aren’t exactly names, though. Fifty percent isn’t a name, or 0 percent, or 100 percent. When I was four, in preschool, we had to write how old we were in our books About Me. Next to our handprints. I remember wondering why the number 4 said something as important about me as my handprint did.
We made handprints everywhere. Tracing our hands. Painting out palms. Pressing them to paper. So many handprints, smooshed, over and over again in that warm paint.
But really there’s just one of me. I’m just one person with too many CAG repeats. Five too many.
I don’t have too many repeats. Or maybe I do. I don’t know. All I have right now is my handprint.
Take it. (My hand.)
Nope. Give it back.
I need it.
I need it to pick one of those problems sitting in the middle of the table, waiting.
This is the one I drew.
It’s genetics. It’s time. It’s life. It’s love. It’s a disease in my family. It’s mine. Or (maybe) it isn’t.
Kelly Cupo ’11 is a product manager at a Web-based entertainment startup in Los Angeles. Her essay was adapted by permission of Johns Hopkins University Press from The Story Within: Personal Essays on Genetics and Identity (2013), edited by Amy Boesky. Boesky is a member of the English faculty.