Living With Or Without Huntington’s Disease


My fourth chromosome is mutated. I am a defective human being. I do not have the test results in my hand to wave, outraged, at the sky; I do not have the uncontrollable shaking and the bleeding gums. But I have blood on my hands and on the crotch of my underwear, Ben’s blood somehow coming out of my body. I have the mood swings and there, right there, the terrifying knowledge that someday I will die an ugly and demeaning death.

I am drinking room temperature water through a bendy straw and reading a shitty poem written by a classmate when I remember I will die. I hate her poem and I hate her and I want to write angry things all over poor Linda’s poem. Things like “I hate horses” or “your French makes me vomit.”

Let’s wait, Ben says. Don’t get too hasty. Just wait.

Get tested, my father warns, his reading glasses reflecting light and hiding his eyes. Get tested before you decide.

My mother stands in the hallway and leans against the door jam. Do you want something, she asks. Blueberry, on the rocks?

But I do not want to wait to be tested. I do not want to wait for science to save me. I want to know right now how my life will end. I want some solid proof, something real; I want to be able to cut my fingers on the edge and bleed, profusely. See, right there, I would whisper. My blood is good, solid blood that bleeds just like yours. But of course I already know that I bleed well.

I am already standing in line for coffee when I feel the the blood seeping out of me. I want to smash the head of the woman in front of me on the counter top and then compare our blood and pretend that what I did was not just stolen from American Psycho and that I am, in fact, original and I do not have to pretend I am okay.

Sometime in my late 30s, I will start to show signs of a lifetime drug addict. Ben will be the first to wonder what is wrong with me, being the first one who is startled by it — my parents both dead. I will become paranoid, angry, and restless. I will hallucinate that there are people coming to kill me. I will start twitching, and will stop running. Slowly, in my mid-40s, Ben will notice me forgetting things and losing my hair. I will disintegrate right before him.

But right now I only show the emotional unstableness that can pass as the appropriate emotional unstableness for a girl her second year into college and seriously debating dropping out. For now I can blame all my mood swings on my apparently faulty birth control, which is a relief, because, no, I do not want to talk about it.

I called Patrick seven months ago, when his father took me to Red Lobster and casually, over the cheesy biscuits, mentioned that his son had Huntington’s. I went home and cried for 20 minutes before calling my mother. She promised that everything would be okay, but all I can remember is the Huntington’s website and the three bullet points talking about various drugs that had shown some inconclusive evidence of help. They sat there, flowing seamlessly after “There is no cure for Huntington’s disease” and “There is no known way to stop the disease from getting worse.”

The next paragraph warned of depression and suicide. In big bold letters: Need help? In the U.S., call 1-800-273-8255. Of course I need help. I’m dying. Instead of my fourth chromosome repeating the normal 10-28 times, it will repeat 36-120. The higher the number, the sooner I’ll get sick. The gene is passed down from parent to child. Every time the mutation is transferred, the greater the number of repeats. Patrick has it. His mother has it. She had to get it from someone.

But instead I call the rape victim hotline and say nothing. Finally the woman on the other end gently hangs up, her voice soft and apologetic.

What are you really afraid of? Ben asks as we trade secrets in the back of his car. Dying, I say. But I know deep down I’m afraid of not actually having Huntington’s. I am afraid, for the same reason Patrick is afraid — that we will be whole and perfect humans that have no reason to be horrible people. Without a disease, I am just bad. He holds the back of my neck while I cry into his shoulder. I’ll never leave, he promises. We’ll be okay.

I’m not entirely sure if I want to be okay. Can you love something, even something evil and bone-chilling and family destroying, because it describes you and gives you the excuses you’re looking for?

My mother is leaning against the kitchen counter, dirty dishes stacked behind her. She’s talking about something, and then accidentally calls me Heather. I don’t even bother to correct her.

Ben forgets to pull his jeans out of the washer and they start molding. I’m adding more detergent when he walks up behind me.

Thanks, he whispers.

It’s here I want to die.

My father holds my hand, his skin soft and still strong. He will be 70 this coming April. I want to get married before he dies. I want to get married before I die.

Sometimes, if I lie very still in bed, I can feel my genes dividing all wrong. My finger twitches and Ben mistakes it for a touch. He twitches back and I’m crying. Again, he forgets that I am breakable and that someday I will twitch and he will know it’s not out of love.

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