Today’s the day.
Time to flip the coin.
That’s the metaphor that was first used to explain HD to me, and it’s deceptive. Supposedly, heads you live, tails you die — slowly and painfully. But I’ve flipped a hundred coins and the act is too simple to accurately describe what is happening. Any comfort lent by the quarter landing face up is cancelled out by the fear of seeing that same face hit the tabletop.
I want to live.
I read a bunch of stuff about people not wanting to know their gene status, or feeling guilty for being gene negative because they have a family member who is positive. But I think HD already gave me more than my fair share of misery when it took my mom. What sense is there in me dying too?
I look up from the bench I’m sitting on and watch as an elderly couple walks by, hands intertwined. My heart reaches out to them in yearning. The couple turns off from the main road and meanders down a path framed by maple trees, eventually wandering just out of view. No matter how much I strain, the trees obscure them from my sight, as though the world is trying to tell me I will never see such a scene again.
Sighing, I look the other direction in search of Carley. I wouldn’t be able to face today without her. I can’t imagine facing any day without her, especially if the odds are against me. She has been so much stronger than I have, staying calm in my sea of chaos.
But I’m afraid.
What if she doesn’t want to take on a dying girlfriend? And even if she will, I can’t ask that of her. She’s here now, and has been amazing. But I can’t ask her to go through this hell with me. My genetic counselor, Andrew, made us talk about what this disease looks like at the end — and it’s my worst nightmare. I’ll likely lose control over my body, as though I’m possessed, unable to ever be still. Eventually, I won’t be able to feed myself. I’ll be in a wheelchair. Then I’ll be bed ridden. And then, less than 10 year from now, I’ll die.
One of the most common ways HD patients die is from choking on their food, and not being able to control swallowing. If I wanted to have a feeding tube it could extend my life, but at that point I won’t be able to make my own decisions.
Arguably even worse than the physical torture, are the behavioral changes — the list of psychiatric symptoms is long enough to make anyone break: anger, impulsivity, depression, and compulsiveness to name a few. And much as I deny it, I think it’s already happening. I can it in the rollercoaster that is my moment-to-moment emotional state, and in the way I lash out at those around me. I’ve never been a particularly sweet person, but never have I as cruel as I have been in the last 6 months. When I look in the mirror, I hardly recognize the person I see anymore. I try to convince myself that it’s just the sleep deprivation, but my reflection looks back at me knowingly, unmoved by my protests.
I watched a documentary about HD and all I could see was this new face of mine in the writhing, pained looks of those affected. The world tells me my results are just chance but I can feel that something is wrong.
I think I have it.
I see Carley walking towards me, and it brings me back to the present. I can tell she’s working hard to stay calm through the layer of worry that has enveloped her all week.
Ever since my last appointment, we have both been on edge. The neurologist said that I had showed some indications of symptoms, but they were slight enough that it was not yet possible to confirm. She also said that HD presents differently in younger patients, and the usual tests are not always completely accurate and I would need to get the genetic test to be sure.
But deep down… I already know. I’ve devoured literature on HD day and night, and at this point I’m informed enough to consider pursuing research on the topic. In every science review and patient narrative I can feel the truth of my fate, I can see myself. But I have to hope — for Carley, for myself, for our future.
Why is this happening?
Looking at the clinic, I imagine seeing through the walls, straight into Andrew’s office. And I see the envelope on his desk. Waiting. My results are in there. A single sheet of paper holds my entire fate.
I look down at my feet, willing them to never lose their ability to carry me for miles, free and swift as a bird.
“Hi there” says Carley.
Looking up, I offer my best attempt at a smile, and so does she, mutually acknowledging each other’s feelings in this moment.
She sits down and holds my hand. “Are you sure you want to go in there?”
“Yes. I’m sure. I feel like the only thing worse than knowing would be not knowing.”
“Okay, if that’s what you want. Either way I’m here, I hope you know that. Through everything, I’m here.”
Looking at her, my eyes water— in love, in fear, in guilt. My whole self wants only to fall into the warmth of the comfort she’s offering. But I can’t put this weight on her. I just can’t.
Sensing my resistance, Carley looks me in the eyes and says, “Hey I mean it. I know what you’re thinking and I’m not going anywhere. You can’t make me. And you know what, if it’s bad news, we’re getting the hell out of here anyways.”
I laugh bitterly, “Where exactly are you proposing we go?”
“Well, we both have a lot left to see of this world, and I want to see it with you. Let’s blow our savings and live out our daydreams. We’ll go to all the places we talked about growing up—New Zealand, South Africa, Brazil— we can even do the touristy stuff and make some stops in Paris, Rome, and London.”
“I don’t know about making it to all of those, but I guess if I’m dying, what do I have to lose?”
“We’re not going to go because you’re dying; we’re going to go because you’re living. So focus on now, focus on what’s left. Whether that’s seven or seventy years, we both have so s lot to look forward to. Whichever way this goes, we’re going to make the best of it. And I will be here. Do you hear me? I’m not leaving you.”
Crying now, I embrace her and sob freely.
“I’m so scared. I’m just so scared.”
“I know, I know”, she breathes, holding me tighter.
We enter the clinic hand in hand.
The receptionist recognizes me and smiles. But I see her hesitation. She knows why I’m here.
Trying not to tremble, I approach and give her my name “Michelle Thompson.”
“Hi Michelle, please wait just outside Andrew’s office, Dr. Miller will also meet you there.”
“Alright, thank you.”
Carley and I walk down the hall to the office of my genetic counselor, the hallway seems to lengthen as we walk, Andrew’s door getting further and further away. I walk faster.
Last time I was here, when they did the blood draw, they asked whom I would like to deliver the results. I surprised myself by asking for both Andrew and Dr. Miller.
We sit in the chairs just outside of Andrew’s office, still holding hands, refusing to let go for as long as possible.
I stare out a window at the now bare trees that once sheltered the building. I try to imagine the new buds of springtime emerging along with the sun, and watching as the once empty trees fill back up with life, only to be lost again to the winds of fall. What seems like an eternity later, seasons coming and going during my wait, Andrew emerges from his office, smiling softly and beckoning us inside. I try not to read into his behavior — I know that he has not opened the envelope yet either. However, I can’t help but hope that his small smile is a sign of good news. Hope is all I can do.
“Patricia is on her way right now, sorry for the delay.”
I’m surprised by the first name reference to Dr. Miller, and wonder if it’s meant to be comforting. As though to say that the impending reveal of my fate places us at an intimacy level that calls for at least a momentary respite from formalities.
“No problem, I know we’re a little early.”
Our hands separate as we sit in the chairs opposite Andrew. I grasp at empty air, feeling suddenly alone.
Sitting quietly for a few moments, I appreciate that Andrew doesn’t try to ask any routine questions. Even a gentle “How are you?” might tear down the wall I’m trying to hurriedly build around myself.
Dr. Miller walks in no more than a minute later and pulls up a chair from across the room.
“Hi Michelle, hi Carley”, she greets us both.
“Hello,” we say in unison. Carley reaches back over for my hand.
I had agreed at my last appointment to being asked about my desire to hear my results one more time before getting them. But I’m still a bit surprised when Andrew addresses me.
“Michelle, do you want to know your Huntington’s gene status?”
I pause for a moment.
I hadn’t harbored much doubt before this. I had been sure I wanted to know. So much was hidden from me growing up that I didn’t want anything else left unknown. But it could be nice to pretend I’m okay… To just go on, hoping that my symptoms never progress.
And there it is.
I know it’s happening, I know something is wrong. I can feel it deep down in my core.
I remember the falls — rare and spread out, but happening nonetheless.
The tightness in my calves as I attempt a sprint.
The angry outbursts I try to tell myself are normal. My emotions constantly laid bare for the whole world to see.
Looking up from my lap, I clearly state, “Yes. I need to know.”
“Okay,” he says as he opens the envelope.
Dr. Miller reaches over to rest her hand on my shoulder. Carley leans closer to me.
Knowing exactly where to look, it takes only seconds for Andrew to read the paper and clearly say, “You’re gene positive. Your CAG repeat is 62.”
I have Huntington’s.
The world fades out and I feel as though I’m falling.
Carley and I walk out of Andrew’s office a little while later. I didn’t hear anything they had said. An apology. Support. Something about making an appointment with Dr. Miller.
As we exit the clinic, I ignore the receptionist. Carley leaves her number and asks her to call tomorrow.
Everything is numb. The world feels blurry and indistinct, like a camera unable to focus.
I’m afraid to move. As though the horrors of my disease will descend upon me all at once if I show any sign of life. Carley urges me forward, and carefully, trying not to disturb a single leaf, I put one foot in front of the other. I’m not paying attention to where we are going. Not paying attention to anything but the sound of my footsteps and the feeling of Carley’s hand in mine.
At home now, I curl up in my bed, Carley holding me tight.
I still haven’t cried. That’s weird.
“I don’t want to move,” I explain to Carley, realizing I hadn’t said anything since we left the clinic.
“Okay, then we won’t”
I roll over to face her.
“You don’t have to do this. I won’t ask you to stay,” I tell her again. I have to give her a chance to leave. This isn’t fair.
“I’m not going anywhere. And I’m not being selfless. I can’t lose you yet. You’re stuck with me for as long as possible.”
Looking in her eyes, I pray that she means it. But I also pray that she doesn’t. I don’t want her to suffer with me.
I manage to choke out a “Thank you,” before burying my head in my pillow and finally crying— wracked sobs that fill up my lungs and claw at my chest. Everything hurts.
Eventually my tears run out, and I’m tired. Just so tired. I close my eyes, and allow myself to drift away. The last image I see before slipping into a dreamless night is of a single bare tree, begging for the beautiful shelter of its now lifeless foliage.