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Emily Rekstis
May 30, 2018 4:46 pm

May is Huntington’s Disease Awareness Month.

At 21 years old, I was living the dream life I had made for myself — working in New York City at a national magazine by day and socializing with friends by night. I felt proud, happy, and fulfilled. At 24, I decided to leave the full-time grind and walk away from my dream job. Not because I didn’t love it — I truly did — but there was something deeper that pushed me out the door: My 50-percent chance of inheriting Huntington’s disease.

Huntington’s disease (also known as HD) is a fatal genetic disorder that deteriorates a person’s ability to think or move. Symptoms range from psychological disorders — depression, cognitive impairments, difficulty organizing thoughts, and involuntary movements called chorea. Its side effects are like a combination of ALS, Parkinson’s, and Alzheimer’s. And just like all of those diseases, HD has no cure.

HD isn’t really talked about, but not only because it’s rare (only 50,000 Americans have it); it also only affects those with a parent who has HD. So if one of your parents carries the gene, you have a 50/50 chance of inheriting it. This leaves about 200,000 Americans at-risk — myself included.

I never wanted this reality to affect my life or define who I am, but as I get older and my life choices become more difficult, I’ve started realizing how unrealistic that is. My knowledge of my impending diagnosis constantly sits in my subconscious and dictates my decisions, whether I want it to or not. The possibility of HD became especially prevalent when I hit my quarter-life mark.

As I topped off a year at the magazine, I felt overwhelmed by the drive to do something important with my time. It’s not like I was sitting around all day being lazy — I had more than enough to do on a daily basis — but most of my time was spent writing short articles I didn’t actually feel passionate about. I always knew that I had to pay my dues in such a competitive industry, but with four unpaid internships and two low-paying contract jobs under my belt, I felt like I had met the requirements.

Before, I kept grinding because I could picture my future as a top editor with influence and respect. As I approached 25, though, I began grappling with the reality that there’s a 50-percent chance I won’t make it to that point.

I might not have the same amount of time that everyone I’m competing against in this industry does. If I continue to climb the corporate ladder, by the time I finally hit my career’s peak, I could be unable to hold a meeting, pitch ideas, or even walk through the big glass doors on my own.

I began feeling like the track I was on wouldn’t result in anything more meaningful than the paycheck I received at the end of each week. For a lot of people, that’s life — and that’s okay. As long as you earn your money, take care of who you need to, and enjoy yourself along the way, that’s not a bad existence — at all!

I wish that was all I wanted to do.

Instead of just enjoying my life in an industry I’ve always admired, I had to face my mortality. I was suddenly compelled to create something that would last — that would matter — and I had to do it now.

Chevanon Wonganuchitmetha / EyeEm

Maybe I feared that I wouldn’t be around long enough to be remembered, so I needed to create something that would be. Maybe writing and storytelling was my life’s passion and I needed to pursue it. Either way, I decided to follow my gut. I went full-time freelance so I could write real, substantial, thought-provoking content that could spark conversations.

It’s been a year and a half since I’ve taken this route, and I’ve been able to work on a few passion pieces. Still, the majority of my income relies on writing service articles that I don’t particularly care about. As I churn out these assignments, I often think to myself: What am I doing with my life? Does the world really need me to do this? Is this why I’m here?

Nearing 26 years old, I’ve found this panic to be a shared experience among my friends.

The wtf-am-I-doing moment — a quarter-life crisis — isn’t uncommon at this point in a young adult’s life, but on top of that, I also sense a ticking clock timing my progress.

And unfortunately, my clock might only tick for half as long as my peers’. So this confusing time is made even more difficult by the 50/50 odds that may determine that I’m not a quarter of the way through my life — I’m halfway done.

My dad was 57 when he died, but he lost control of his body and mind long before then. If I share his same fate, this doesn’t leave a lot of room to make mistakes and adjustments.

I could take a not-so-simple genetic test and find out whether or not I have HD, but I’ve already strongly decided against doing that for many reasons. For me, I’ve realized that knowing I have only a 50-percent chance of getting Huntington’s disease is better than knowing I have a 100-percent chance. Sure, you could say, “Isn’t a 100-percent chance of not having HD better?” You might also say those test results would be the ideal tool for someone in my situation, but it’s not that easy. I also have two sisters at risk; I’d still have to worry about them even if I test negative. I’d rather continue through life as I already have been, and until I change my mind, I’ll stick with my 50/50 odds. Even if that’s not “ideal.”

***

Every time I hear myself stumble over my words, every time I momentarily lose control of my hands, panic immediately washes over me. “It’s starting,” I think to myself. That fear only worsens my mumbled words or clumsy disposition. It’s somewhat irrational, but it’s my reality. There are certain things I just can’t take lightly, and that includes my career aspirations.

On one hand, I feel fortunate to recognize that the cliché “life is short” is a reality. I think and hope that my 50/50 odds push me to take advantage of my time, to use my energy in ways I find constructive and personally important, like writing. But is racing against an imagined clock really the best way for me to figure out the life I want? Since that’s what I’ve been given to work with, I guess it is.

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