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Symptomatic

I stand at the starting line alongside the other competitors, stretching and jogging in place, contemplating the race ahead. Just shy of six miles long, the course winds through the desert relentlessly, pulling runners further into the heat until every ounce of moisture is drawn from their bodies. This is easily one of the most difficult runs in the area, but I am always ready for a challenge. Past successes confirm my knowledge that I am stronger than everyone else.

Out here in the middle of nowhere it is easy to get lost. The trail we will follow, lined with mismatched rocks of various shades of reddish-brown, offers no comfort or guidance in the face of this lifeless climate. Without obvious landmarks or pretty scenery to keep one company, runners have to rely on the fortitude of their minds to push through.

In spite of the bleak road ahead, or perhaps because of it, I am excited. This stretch of land off of Highway 62 is familiar to me and I thrive in the heat in a way that my coastal counterparts can not. When you say “Southern California,” most will immediately conjure up images of the beach and palm trees, 70-degree weather, and vibrant cities full of beautiful and interesting people. That is not the case for my small town. Here, the drought is old news and most people live lives about as full as the reservoirs. But I have hardened myself against the harsh conditions of such monotony and after suffering through this place for years, I anticipate a landslide win in my territory.

My thoughts continue to wander and, willingly or not, I land on my favorite topic—Carley. I secretly hope that she will make it from work in time to see the race, though I would never consider asking her to come. Thankfully, despite my stubbornness, she always knows when I need her and shows up anyways. Carley is the one distraction I appreciate and winning feels better when she is there to see it.

I have often wondered if it is wise to allow myself to care so strongly for her, but despite efforts over the years, I have never been able to distance myself. We both have college dreams and stand a damn good chance at achieving them — I run fast and she is smart as hell. But I constantly worry that I will be forced to choose between her and my dreams. If we are split up, or God forbid one of us ends up stuck here, long-distance is definitely not an option.

Shaking off my anxieties about the future, I try to refocus. I need to stop letting myself be so easily distracted, especially during races. Senior year is my last chance at recruitment and I need to dominate. I take a deep breath of dry desert air, clear my head, and ease into my pre-race routine.

Preparing myself, I block out the rest of my thoughts and focus on the race specifics. Seeing the twists and turns of the path in my mind, I make a plan for the run. First, a smooth and strong takeoff, launching into the race with perfect form. Then I will settle into a comfortable speed at about 6th or 7th place for the following four miles. At around the two-third mark I’ll kick it up a gear and move ahead a few spots. Finally, in the last stretch of the race, I’ll take the lead and win by a solid 50 to 100 meters. It’s the perfect formula for victory.

With a couple of minutes to go, I systematically begin flexing and relaxing my muscles in preparation. The temperature makes loosening up easier, but I still have some trouble shaking out my calves— a chronic issue that my coach claims is due to not weight training enough. Since I am the strongest runner as well as team captain, he feels the need to give me advice, warranted or not. I have never exactly trusted his judgment though, given his status as a mediocre former jock and my old man’s long-time drinking buddy. When neither of them made an appearance this morning, one not invited and the other abandoning his coaching responsibilities, I was forced to organize the carpool and bring all the food and drinks for the rest of the team. I suppose I shouldn’t be shocked at the incompetency of someone put in charge of minors — after all I lived with it for about a decade with dear old dad.

Dammit, my mind is wandering again. But I can’t help being bothered by the whole situation. Although I care for my team, I am frustrated by anything that pulls my attention away from my own needs, my own race. I can’t afford to be distracted.

                    Focus.

I know I will win. I see the course in my mind again and am certain. Victory is not a question but an expectation. Not just because I know I am better than everyone else, but rather because I have to win. Barring death, few ever leave our town. Caught up in young marriages or family-owned businesses, there is never any encouragement to work for better, to hope for more.

People tell me my mom was smart, I wonder if she ever had an escape plan. I guess even if she did it was foiled by her pregnancy with me. My plan is to make a run for it, literally. Victory is a standard I have set for myself ever since I realized that running could be my ticket out. The goal is an elite Division I school. A place where I can take advantage of the countless opportunities that will be laid out for me in a neat little row, one after the other.

          The gun goes off.

                I trip.

I am embarrassed beyond belief but hastily regain my footing and launch into the first phase of the run. What the hell just happened? I’m not concentrating and it ruined my start. A rookie mistake, I need to do better.

I steady my breathing and lengthen my stride, working to make up the lost ground. After a few minutes I find 6th position and resist the urge to take the lead of the pack in retaliation for my earlier blunder. Instead, I find a comfortable pace that will keep me poised to overtake those ahead of me while simultaneously conserving energy. Self-control is the key to my wins. Even in a pre-season training race such as this one, I never stray from my mantra.

                    Focus.

          Start slow and steady.

                    Focus.

          Beat ‘em to the finish line.

I always find a certain sort of pleasure in that final surprise. As I run, alert for anyone creeping up behind me, I visualize myself pulling up to the front of the pack, still calm and breathing steadily, perfectly in control. Feeling me on their heels, others will quickly lose morale and I know that I have won.

The desert passes by unremarkably for the next couple of miles, the pounding of my feet and the sound of my breath all I can hear, the puffs of dirt with every step all I can see. My mind is the clear, still surface of a seemingly endless lake and I feel strong.

About three miles in I wobble and almost fall, a rut in the dirt my feet do not react quickly enough to. I lose no time but my meditation is broken, and the slight error strikes me as odd. I typically respond to the irregularities of the dirt path reflexively, without thought. I am not paying attention again. I must be letting myself become too relaxed.

                    Focus, focus, focus.

My ability to command my body to continue, to push further despite the screaming of every muscle fiber, is my greatest pride— complete self-control.

My father used to tell me that the key to success in life is power. “Powerful people can have what they want, do what they want, control their own destiny.” I now know this for what it was: the angry rants of an unemployed alcoholic with absolutely no authority over anyone or anything. However, there is a certain truth to the old bastard’s words, and I value my power over myself extremely highly.

Almost five miles in now. I am still towards the front of the group, hovering just behind the current leaders and feeling strong. My shoulder feels weird though, stiff and sore as though I had slept in an odd position. I try to rub the ache out.

The final stretch is my favorite part of a race. Most runners feel a rush of exhilaration as the finish line approaches, but I feel a rush of almost inhuman energy. My body filled to the brim, I feel as though I have been given a good scare and all of my basic instincts are yelling, “run!”

I throw myself forward, ready to strike everyone in that last half-mile. I at my strongest, they at their weakest. I pass a few runners, briefly indulging in the looks of exasperation that flash across their faces before I move onwards. About a minute later though, with just over a quarter-mile left, something odd happens— I can feel my legs weakening. Suddenly, they feel as though they are made of lead, drained of all the power they contained only a moment ago. Despite my best efforts, I cannot will them to run any faster and I know I am falling behind. Looking forward, I see that there are still two runners ahead of me and not enough dirt left. Steeling my mind, I practically scream in my attempt to catch up and manage to pass one of them, but seconds later the other cruises across the finish, a full 10 seconds ahead of me.

The spectators are cheering as my teammates pat me on the back, saying how great I ran and that I had State in the bag this year. I’m not listening to any of them. I look down at my legs and they shake, as though the shear effort of holding me up is too much for them anymore. The post-race exhaustion hits me like a wave. Usually a bearable feeling, this is much worse than anything else I have ever endured. It is the sensation of all my dreams crashing around me, pushing me down into the dry desert ground. I stare at the earth as though I am afraid it will swallow me whole. Looking up I see people cheering, including Carley, who managed to make it to the end of the race. She looks at me with concern, but I find no comfort in her gaze. Slowly, I sink to the floor and grab my ankles, too drained to move any further. I ran my race and I lost.

Second place.

Why did my body disobey me?

 

Something is wrong.

 

My usually infallible confidence fails me and suddenly I am afraid.

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The Bar Exam

I get an odd rush out of telling people how nervous I am about the Bar results coming in today. And it’s true, I suppose I’m somewhat antsy about them and it’ll be great to know officially. But I’m not actually worried: I do well on standardized tests. I studied for months and I felt fine when it was over. Yet here I am, refreshing the results website every two minutes, frantically dissecting with my colleagues what we can remember of the exam questions, feigning more nervousness than I have. It took me until 2:53pm today to realize why:

I didn’t get to do this the last time around.

Years ago, during a summer break from college, I worked as a lowly intern at a small newspaper. I didn’t get to do much substantive work (again, intern), but I enjoyed the office and my co-workers and the blueberry danishes they sometimes brought in. But as the summer crept along, tension and frustration churned in my stomach. I knew what was coming. Before the job started, I’d made the first appointment to get tested for Huntington’s. I respect people who make the decision to hold off on testing, to let it go until there’s a pressing reason for it. I wish my brain could work like that. But it has to know more, has to keep asking questions, has to know more than it has earned and more than it should. It was a surprise to exactly no one when I chose to get tested almost immediately after finding out about being at risk. I also knew myself well enough, however (at least I thought I did), to postpone getting the results until the day after my summer job ended in case things went poorly.

From the moment the phlebotomist walked away with my sample, the summer turned slow and agonizing. For all my confidence in the psychiatrist’s office about my support network, I didn’t trust myself enough to talk to any of them. I didn’t want to burden my family about it, so I tried not to let out more than small snippets of my anxiety to them. My friends were on the receiving end of slightly larger bits of crazy, but there was only so much stressing I could do over e-mail before I knew that their eyes might be glossing over or they might just skip reading my epic, five-page and completely self-absorbed email entirely. (How dare they, I know.) My boyfriend, a truly wonderful person who played a key role in this support network, wasn’t my boyfriend anymore. I’d picked fights and pushed him away ever since learning about HD, and even when I realized I wasn’t being fair to him, that I was projecting my fears about what was happening and what might happen onto him and our relationship, I couldn’t stop myself from deciding I was finished.

That left my co-workers, the people I spent most of my waking hours with. Of course I couldn’t talk to them. Those were the people from whom I’d be seeking recommendations, the people with whom I wanted to work in the future, and to let them know that my mind wasn’t entirely on work so much as it was on the degenerative illness I might have that would destroy my brain function? Not a great idea. Looking back on it, I was probably underestimating their empathy (and overestimating the impact that co-workers during one college internship would have on the rest of my career), but not talking about it at all to them did help me maintain a professional facade in the workplace when I felt nothing but nerves inside.

The waiting seemed endless, of course, until it ended. My best friend sat next to me holding a box of tissues and the genetic counselor looked so somber and the neurologist was direct when he told me I fell on the wrong side of 50/50. For a moment, I wanted to be back in the waiting, but then I felt the knot in my stomach dissolving and was grateful that, no matter what was in store, at least I’d made it through this part.

The pass rate for the Bar exam I took is a little over 50%, unfortunately and eerily symbolic of that summer a few years back. But this time I’m waiting on results that I put a great deal of effort into, gave myself the best possible chance on, and frankly, did well at. (If I failed, I take this all back.) So I’m not nervous today, not by how I’ve started defining “nerves” since I took my HD test. But everyone else seems to be, and I’m happy to make a show of it for my co-workers, for my friends, and for my parents. My parents have called and e-mailed often, wanting to talk about what the waiting is like and how excited and nervous they are. My mother even told me about a nightmare she had about waiting for Bar results. (I wouldn’t be surprised if, a few years ago, there were lots of nightmares about the waiting that she didn’t and never will tell me about.)

And when I get my results back, I will post them on Facebook, because there’s no one in the world I have to hide it from.

 

The author who submitted this story to HOPES wishes to remain anonymous.

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NEW! Stories Section

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HOPES is excited to present a new Stories section on the website! This section is meant to be an open space in which individuals affected by Huntington’s disease (patients, caregivers, and friends) can share their experiences with HD in the form of anonymous text excerpts. We believe the sharing of narrative can have healing qualities and promote connectivity within the greater HD community.

Stories can take the form of submitted text or transcribed, in-person interview. We are open to all forms and styles of writing. If you are interested in submitting a story or setting up an interview, please contact HOPES member Annie Rempel (arempel@stanford.edu).

 

 

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