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(5) Resistance

I wake up to a dark sky, having slept through most of the day.

Looking over my shoulder, I smile to see Carley sleeping soundly.

Slowly, I get up, trying to move as little as possible so as not to wake her.
I note that my roommate is not home and then remember that she is at a conference for the weekend. Well that’s convenient, I’m not sure how I could have explained to her the state that I was in yesterday.

Thirsty, I grab my water bottle and chug, focusing on the feeling of cool water running down my throat, trying to keep the thoughts flying around my head at bay.

What are you going to do now?
Is there any point in staying at school?
Maybe it would be better to just run away.
What about Carley?

Looking at her, my heart hurts. I can’t put into words how grateful I am for her love, and her loyalty. I really do think she means it when she says she’ll be with me until the end.

But I’m still afraid.

Not knowing what else to do, and unable to cry anymore, I grab my running shoes.
As familiar as breathing, I pull them on and tie the laces tight.

Outside, the cold air hits me like a wave and I regret the thin layers I am wearing. Facing into the wind I take a deep breath in and swan dive forward, stretching out my legs. It takes longer and longer to get loose nowadays, and I can’t tell if it’s a symptom or just a function of not running as much.

Quitting the team had been tough, but also a relief, and now I’m glad to already have it out of the way. I just couldn’t handle not being at my best, being less then I was capable of. Most days, I was the worst on the team.

That day I cried and cried, feeling like I was losing bits and pieces of myself and there was nothing I could do to stop it.

And I know it will be completely gone soon. If I progress the way Dr. Miller thinks I will, then in a year or two I won’t be able to run and not long after that I’ll lose the freedom of walking.

Rising up from my stretch with another deep breath, I decide to try and enjoy my autonomy while I still have control over my body.

I squat down and feel my quads engage, enjoying the warmth emanating from them as I hop up and down. I feel strong. Last, I make small circles with my feet, working out the stiffness in my ankles. I admire their dexterity as I spell first Carley’s name and then my own with each foot.

Putting my back to the wind, I take off down the sidewalk, going slowly at first to get my bearings. As I warm up I push myself faster, enjoying the pull at the back of my legs as I lengthen my stride. I feel faster than I have in a long time and relish in the experience, easily finding my rhythm and only just noticing the tightness in my lower legs, the desire for them to fall out of line. The mental effort it takes to keep myself moving gracefully is intense, and I feel it begging me to stop, or to slow.

At that moment, I look up from my feet, which I had been carefully studying to help me focus and I see a flurry of birds take flight from a nearby tree, soaring into the sky all at once. The sight is beautiful and I run to them, sprinting, jumping, and flying to be right underneath them. I run along in the same path they fly, picturing myself in the air, free of the shackles that HD is forging for me. Restraints that will keep me here, on the ground, never to feel the rush air beneath my wings or wind in my face as I sprint down a hill.

The birds turn suddenly and I am forced off my path, onto uneven ground covered in the layers of decaying and freshly fallen leaves of late fall. They give way beneath my feet as I work to keep up with the birds overhead. Suddenly, I feel my right foot sink in further than expected, and the groundcover wraps around my calf as my knee buckles.

Then I am falling, first slowly and then all at once. Unable to react quickly enough, my face hits earth with a hard thump, only lightly cushioned by the leaves that had pulled me down.

Looking up, I see the last of the birds flutter away.

Rolling over, I feel my body protest, my ankle and head in pain from the fall. I stare up at the clear blue sky visible through the bare branches above me. Exhausted, I cannot find it within myself to do anything. I cannot cry. I cannot yell. I cannot move.

I want to do all of these things. To sob until my lungs scream for air, protesting at the suffocating grasp of my prognosis. To shout at the injustice of a world that would threaten to take away the decades more I could have spent with Carley. And to run, as fast and as free as I have ever been— far, far away from anyplace that has ever heard even an uttering of the words Huntington’s disease.

I grasp a handful of mulch and throw it angrily, explosively. Hitting the earth with my fists in a futile attempt to fight back. I want to fight back.

Burrowing deep into my mind I think about all the things I could have done. Graduation, a fulfilling job, pets, marriage, children, and a peaceful death — old and wrinkled in my bed, surrounded by loved ones. No matter what I do, my life will not look like that, and I don’t know how I am supposed to just accept that.

Rolling onto my side, I grunt as I prop myself up and then carefully wiggle my right foot to check its status. Definitely not sprained, just a little bit sore. I feel relieved, knowing that I will be able to run again soon.

But for how much longer?

Standing up slowly, I gaze in the direction of my flock of birds, wishing I could just spread my wings and fly away from it all. Turning back, I gaze towards home, towards where Carley is likely still sleeping soundly, hopefully able to forget the horrors of reality for a few more blissful hours.

Thinking of her I can’t help but feel guilty — guilty that I would ever consider leaving, even if it were merely a daydream.

She deserves better than a dying girlfriend who runs away. She deserves to be happy.

And that’s when I see it: I see how I can fight back against HD, futile as the effort may be. I can’t fight my symptoms, and I can’t stop the progression. I may not even be able to control how I will behave through all of this. But I can do one small thing. I can love, and I can be loved.

And it won’t fix anything. But at least for today, it will carry me through.

Taking a step, I start my journey back towards home, towards hope. And in this moment, I feel strong again.