This is a collection of fictional short stories from the perspective of patients with Huntington’s Disease as well as family members of those with HD living in South East Asia. These stories do not reflect the experience of any one individual, nor do they cover the entirety of a HD experience in South East Asia. However, these stories hope to explore themes of social stigma in countries where mental illness is not often talked about. Hopefully, the series of short stories from a perspective of those affected by the illness will help readers to understand the illness and empathize with those affected by the illness.More
The following is a series of fictional short stories from the perspective of someone with Juvenile Huntington’s Disease. These works do not represent the experience of any one individual, nor do they aim to encompass the entirety of an illness experience such as JHD. Rather, these stories strive to capture and explore themes presented across different JHD and HD experiences through a collection of punctuated narratives. Hopefully, engaging with JHD through storytelling will allow readers to better empathize with, and understand the nature of, the experience of this illness.
It’s the first day of classes and I’m late. I’m running both towards and away from my destination, unable to nail down a sense of direction. Suddenly I arrive, unsure how I managed to find the room. The door swings open to reveal a huge lecture hall full of people. I trip on my way in. Darn it. I look around and see an ocean of faces all trained on me. I don’t recognize any of them, their features blurry and indistinct. Then a few gazes lock with mine and suddenly they are familiar. My high school classmates. I don’t even question their presence at the same college as myself, but instead sit down in a desk immediately in front of me and hurriedly dig out a notebook. When I look up the room has changed and my backpack is gone. I’m at a round table with people I don’t know, blank faces that look somehow identical and radically different from each other. I have a feeling we are waiting for someone, a professor perhaps? When did I sign up for this class anyways? The door opens and someone enters the room. The furniture and people disappear, and I’m standing right in front of the newcomer. She introduces herself and reaches out to give me a hug. Where did everyone else go? Stepping back, I look into her face and see my own eyes staring back at me.
My 5am alarm jolts me awake. Smacking at my phone a few times, I finally manage to hit the snooze button, but it has already done its job. Lying in bed, I attempt to stay in my dream haze as long as possible. I grasp at memories just at the edge of my mind, trying to recall the scene I was pulled out of. A room. A different room. That face.
Nothing, it all slips away. Except for those eyes, the same ones that have been haunting me all week. Big, brown eyes with flecks of gold in them, the same as my own.
Their owner never says a word. She appears, attempts an affectionate gesture, and meets my gaze for just a moment before I am pulled back to reality. I know it makes the most sense to say that this woman is my mother, showing up in my dreams as I prepare to embark on ‘adulthood’. But I have long since adapted to living without her and my high school graduation doesn’t seem like a good enough reason for her sudden presence.
You can’t miss what you never had right?
I rotate onto my back and stare at the ceiling, contemplating the significance of the day — I’m almost free. Graduation day is bittersweet for a lot of people, but I feel only relief at its arrival. Once today is over, only a single summer stands between me and the rest of my life.
As Valedictorian and Athlete of the Year, I am giving a single double-length speech, the two titles usually going to separate individuals. I attempted to turn down the offer to speak, not feeling much excitement about speaking to a group of individuals I was hoping to never see again. However Carley talked me into it and helped me write the speech, so I guess I’ll put on the bunny ears for a day.
Luckily we are both heading off to Duke, her on pure merit, me on running. It’s actually a miracle I pulled off good enough grades to stay Valedictorian and not have my offer rescinded; second semester was tough once the burnout caught up with me and I could not focus in any of my classes. Senioritis is not something I had expected of myself.
All right, I’ve wasted enough time staring at the ceiling, time to get going. I slowly stand up. My body resists the movement, straining at the change in position. I’ve been remarkably stiff in the mornings lately, my muscles tightening almost to the point of pain. Maybe I should stretch more.
Walking to the bathroom, I can hear my aunt and uncle snoring in their room down the hall, their dog Elvis padding towards me to say good morning, and the soft coos of the mourning doves out back. I close my eyes and enjoy the pre-dawn sounds— this has always been my favorite time of day. On autopilot now, I throw on shorts and a sports bra before grabbing my favorite Nikes. In June, even the early mornings are warm enough to build up a sweat, and I remember to throw on sunscreen before chugging some water and heading out the door.
Outside, the horizon is a blooming shade of coral above a still dark landscape, a new day just moments away. I set off at a leisurely pace on my usual path, enjoying the pain in my legs as they work out the tension from the night.
The beginning of this run is flat and bare, a few Joshua trees the only greenery, but I remind myself to stay focused so I don’t lose speed or trip. When I reach the top of a nearby hill, I pause, needing a breather. I gaze out at the now brightly lit view.
Without the pre-dawn shadows to hide behind, I can see the entirety of the town. There is the high school whose fences I have fought for the last four years. There is the single street of downtown where adults go for a night out and kids go to get into trouble. There is my dad’s house, only a few miles away from my aunt and uncle’s. There is the Old Mill Bridge, crossing 50 feet over a long ago dried-out riverbed— maybe my mom thought there was still water in it to catch her when she jumped. I turn away from the sight and take off down the hill, hoping to put some distance between my thoughts and my body.
Why is she on my mind again?
I need to stop obsessing over someone long gone and buried. For the most part what had happened was thoroughly swept under the rug — or in my dad’s case drowned in gin. But throughout the years rumored mental health problems have been brought up by more than one of my peers. Whatever the reason, at the age of only 20, Denise Thompson took a swan dive that left her husband in a 17-year tailspin and her year-old daughter without a mother.
She was not that much older than me.
Disturbed, I push myself to move faster, but quickly falter. Still panting, I am overcome with exhaustion and have to stop again. Shoot, I need to get back to a normal training schedule; I am getting way out of shape. I have not been able to finish my morning trail at a decent speed in weeks. I need to kick it up a few gears if I am going to be ready for the fall.
I’m still tired but have caught my breath, so I continue the descent at a slow pace, watching the ground to avoid any slipping— my hands are still raw from where the gravel cut my palms last week and my knees have scars from the months before.
Hot and sweaty in my dress and graduation gown, I struggle to keep my cap on against the wind. Everyone is lined up on the soccer field adjacent to the stadium, waiting for the ceremony to begin. A class of only 57, I can recite all of our names in alphabetical order in my sleep. The music finally starts and that is our cue. We walk into the stadium single file, trying to look as though we don’t all have minor heat exhaustion. I arrive at the front row and take my seat next to Carley, resisting the urge to hold her hand. Once everyone is seated, we say the Pledge of Allegiance and someone’s little sister sings the national anthem. Our principal starts the speeches with a few non-specific words about school pride and tradition. The District Superintendent follows him, rambling on for a solid 20 minutes before it is inevitably time for student speakers. Going first is Joey Anderson, the student body president and town’s future mayor to hear him tell it. He stumbles over a few cheesy words about our accomplishments thus far and our impending entry into adulthood before closing with our (only) school cheer.
I know I am next but still futilely hope that I’ll be saved the pain of giving the fluffy, inspirational speech written on my notecards. When the last ‘Go Bulldogs’ has finally faded away, Joey smirks and sarcastically introduces me as the school’s “star student”. No one else seems to pick up on his tone but me— does everyone think he is praising me?
No. The little rat is taunting me. I feel a boiling rage begin to build up inside of me as I stand to walk the few steps to the stage. I want to throw Joey off of it with every fiber of my being, but he returns to his seat before I get to him.
How dare he mock me? Yes, I am the star of this mediocre school and town. And I worked incredibly hard for it. Screw him and everyone else like him in this town— telling me my whole life that I was crazier than my mom, that my plans were nothing but a pipe dream. This town has given me wall after wall to tear down on my way to success and now that I have finally done it, I am being teased as though I’m just some third-grade brownnoser. Not a pat on the back, not an apology for doubting me— for holding me back.
Forget them, I don’t need this.
Standing at the podium, I look out and realize that my face must be betraying my emotions.
Good. They should know how I feel.
The speech Carley and I wrote flies out of my head and I have nothing left to say but the truth. “I have hated the last 17 years here and I hope to never come back. Good-bye and good luck. Actually, just good-bye.”
I stalk off the stage, across the turf, and straight out the main gates, leaving shocked silence behind me. Still fuming, I kick at a trash bin and knock it over, scaring a flock of birds out of a nearby tree. As I watch them fly away, my anger dissipates and all I feel is emptiness.
Arriving back at my aunt and uncle’s, I look around my room unsure what to do.
Should I pack?
No I guess that’s bit extreme.
But staying is going to be exceptionally miserable now that I have basically flipped off the entire town. I feel a twinge of guilt for my aunt and uncle, who are probably embarrassed after my stunt. They don’t deserve that. They took me in when I had nowhere to go and they’ve always been kind to me, hell they even showed up to a few races. I hear the front door open and cringe at the thought of facing them, but I know it is inevitable.
They knock on my door before entering. Standing there, they look worried, exceptionally so actually. This strikes me as odd, I had anticipated anger.
“Michelle, we need to talk to you,” my aunt says.
Ominous, but expected.
“Yeah okay. Look, I’m sorry about what I did back there, I was angry at Joey and it got me rolling,” I explain.
“That’s okay, we get it. You have some right to be angry— the kid was being petty. But it was just a dumb comment. What made you so mad?” my uncle tentatively asks.
“I mean he was being a jerk. And it’s not fair that he can just get away with that.” I see the look in my Uncle’s eyes and feel guilty; I must have really embarrassed them.
“And okay yeah I guess I overreacted. But I was just so angry— I can’t explain it. I’m… I’m sorry guys.”
“We forgive you,” my aunt responds, “but we’re worried about you.”
Do they think I have anger management problems or something?
“Look, I’m sorry I worried you, but I’m okay. I just got a little angry,” I say in defense.
My aunt looks at my uncle before responding, “Michelle we know, but you seem to get a little angry a whole lot lately.”
“What are you talking about, no I don’t,” I snap.
My uncle steps in now, “What about after that final race earlier this year? You almost bit off your teammates’ heads.”
“My last race? You mean the one where I came in second? Of course I was angry I had a right to be! I shouldn’t have lost,” I say.
Thinking back I remember that day. I had fallen and twisted my ankle. I kept running but didn’t stand a chance at taking State after my mistake. It killed me to lose.
“Alright, what about last month when you couldn’t find your shoes? You tore this room apart,” my aunt says.
“Ugh, okay, maybe I overreacted then. But you know those are my favorites, I thought Elvis had eaten them. Look why are you bringing this up, do you want me to go to anger management classes or something?” I ask.
My aunt glances down, “No Michelle nothing like that, we don’t think it’s your fault… You, you may want to sit down, we need to tell you something.”
All right, this is weird.
“Um okay… what is it?” I ask.
“Well, it’s about your mom…” my uncle answers.
Looking at my aunt, I see something that looks like fear in her eyes. Or maybe it’s grief; she has never been willing to talk about her sister.
Why do they want to talk about my mom?
I can’t help but think about my recent dreams, my obsession with the Old Mill Bridge. Maybe they know about the dreams.
Have I been talking in my sleep?
Hesitantly, I perch myself on the edge of my bed.
“My mom? Um, okay, what do you want to tell me?” I ask.
“Has your dad ever told you why she killed herself?”
Surprised I respond, “No, he didn’t. I thought she went crazy, people have said she was… distressed,” trying to save my aunt’s feelings.
My uncle looks at my aunt and she nods, her eyes glazed over with tears.
Confused, and more than a little afraid, I shoot off a stream of questions, “What the hell is going on? Why are you both acting so weird? What do you want to tell me about my mom?”
My uncle looks at me and says, “I don’t know how to tell you this Michelle, but your mom was sick. That’s… that’s why she jumped off that bridge.”
“Sick?” I ask, “ Like she was insane?”
Are they trying to say she was schizophrenic or something?
What does this have to do with me?
My aunt suddenly jumps back into the conversation, “No, no, she wasn’t insane. Michelle, your mom was diagnosed with early-onset Huntington’s.” She looks visibly ill as she forces the words out.
Surprised I reply, “Huntington’s… I’m sorry what, what is that? Why does that sound familiar?”
“It’s a brain disease, we don’t know that much about it but… it’s fatal” my uncle answers, my aunt too choked up to say anything more.
After a moment I ask, “Wait, so she killed herself because she was going to die anyways? How long did she have left?”
I feel surprised and hurt, old wounds I thought long ago healed opening up. My mom chose to die. I always thought it wasn’t her fault… she had a mental illness or something. She went crazy— you can’t blame someone not in their right mind for their actions, for abandoning their child.
“No, no that wasn’t it. I mean partly yes, but it was the guilt that killed her. Michelle, this disease— it’s genetic,” my uncle responds.
All the blood drains from my face as I realize what they are trying to tell me.
Even my one biology class had taught me enough to realize what that meant. I might get it.
“Why are you telling me this now?” I ask them, not wanting to hear the answer.
My aunt can’t look me in the eye.
My uncle answers, “Because the doc told Denise that there was a 50% chance she passed the gene on to you. We, we always hoped that you wouldn’t get it. That maybe it was a mistake, or that you would beat the odds. But today… well, your mom was angry a lot before she was diagnosed. She… couldn’t control it.”
My aunt finds her voice again and continues, “She got clumsy too. She had been a dancer, but all of a sudden she was tripping over doorways.” Overwhelmed, she buries her head into my uncle’s chest and the floodgates open. But her sobs feel miles away.
My runs. I fall all the time.
No, there is no way.
I realize that my hands will not stay still.
50% chance, that’s a coin flip.
Looking up at my aunt and uncle, I realize that they are horrified at the sight of my shaking hands.
“Please get out,” I say.
My uncle hesitates, but looking at his sobbing wife, decides otherwise and gently guides her out the door. Before he closes it he looks at me and says, “Please talk to us. You can get a test done to check. You might not have it,” trying to infuse his words with hope. They ring hollow.
Quietly, they exit the room. The moment the door shuts, I jump across the room to my old desktop and open up the web browser. I type in “Huntington’s Disease”.
Almost 3 million hits.
The first is the HDSA site — Huntington’s Disease Society of America.
Shoot, this is real.
Reading quickly, I see “fatal genetic disorder,” “deteriorates physical and mental abilities,” and “no cure.”
Do I have this thing? No way. There’s no way.
“Symptoms usually appear between the ages of 30 to 50.”
I’m too young.
Then I see a header “JHD Overview,” followed by a short paragraph. “In approximately 10% of cases, HD affects children or adolescents.”
There’s no way, I have to be too old for that. I’m 17.
Opening a new search bar I type in “Juvenile Huntington’s Disease.” I find a different site.
“20 years or younger.”
Too shocked to move, I stare at the screen. I’m looking for something — anything — that will confirm this isn’t me. I come up empty. Frustrated, I stand up and grab my backpack on my way out. I don’t know where I am going but I need to get away from here.More
I see sacred white strings tied around my mom’s ankles and wrists. Although I haven’t seen her since father told us that she left us for another family, I want to see her one last time. The charred body lies before me, burned beyond recognition, but the necklace father gave her years ago is still recognizable. I wouldn’t have believed that the burnt corpse was my mother if it was not for that necklace and my trust in the elders. They say my mom died in a fire accident. She is laid out on a table with her hands held together in a prayer-like gesture, holding a lotus flower and incense sticks. I look down at her blackened face and graze my hands over her necklace. Bits of ash flake off onto my hands. The act alone almost causes me to break mentally. The smell makes me turn my head and gag. My hands start trembling so hard that I push them against my black dress in an attempt to steady them.
The undertaker pulls me aside and gently puts a coin in my mother’s mouth. I don’t know what sets off my anger, maybe it’s the ash stains on my hands that I can’t seem to rub off or the fact that my dead mother has broken her promise to never abandon me for the second time. First was when she left me for another family and now when she leaves me forever. The monks stop me before I can shove that stupid coin down her throat. It’s been seven days but the monks continue to chant and people in black continue to weep. They take turns pouring scented water over her hands. Most make blessings or ask for forgiveness for past misdeeds.
The line to my dead mother is endless and I am waiting for my older brother, who is almost ten and a year older than I am but his squeaky, stupid sobs put me in a bloody temper. “Stop crying, Awut. Father will be displeased if he finds his eldest son crying like a little wuss.”
“But that drunken fool isn’t even here, Orasa.” My brother stops crying and those angry brown eyes are now playing tricks in the light coming from the candles situated around the temple. “He won’t even come to Mom’s funeral.” His dirt marked face wears a painful expression and while I am not crying like he is, his face mirrors my own. My dark short hair makes me look more like a boy than a girl; and more often than not, people mistake my brother and I for twins.
“Let’s go before father knows we’re here,” I mutter. When Awut gives me an accusatory look, I deadpan, “Or would you rather face father’s wrath tonight? I’m not in the mood to get kicked out of the house again because of your stupidity.” My brother looks like he wants to beat the shit out of me. Instead, he sucks in his round cheeks and stares past me.
Later that night, I wake up to the sound of a thunderstorm. Water drips from the leaky ceiling, running in streams and splattering over my head. The electricity is cut short but I can still hear the echo of footsteps heading towards me. “Orasa! Orasa, wake up!” It’s my annoying brother again.
I mumble, “Go back to sleep, Awut. It’s just a thunderstorm.” I roll to the side and try to cover my body with the ragged blanket. However, the blanket is too small to cover my feet and I can feel my toes freezing as the wind blows through the cracked windows. As if the wooden floor I’m sleeping on and the water dripping onto my head are not making me cold enough, my brother has to put his cold hands over my face in an attempt to wake me up. Frustrated, I finally turn towards him. “For Buddha’s sake, what do you wa—”
I stop midsentence when I see the look on his face. Despite the darkness, I can see how pale he is. His voice is shaking, “Orasa…I think I did something I don’t think I’m supposed to do. I think…”
I roll my eyes. “Spill it out already.”
He fidgets and rubs his hands together nervously. “I went to father’s praying room.”
“You did what?!” I sit up and grab my brother’s shoulder tightly. “You fool. You know what father will do if he finds out you went into his praying room.” I grab his shoulder tighter as if I’m trying to force a confession out of him.
“I didn’t go in though,” he continues weakly. “I followed the monks from Mom’s funeral. I saw them heading towards father’s wooden hut in the forest so I thought they were going to pray for mom. I was about to follow them in but then I heard something.” At this point, Awut’s entire body is shaking uncontrollably and his puffy red eyes are starring into empty space. He whispers, “Her voice wasn’t soft and smooth like I remember. But I heard her, Orasa. I heard Mom calling out for us.”
I sit still and stare past my brother’s face. He looks at me and his hands reach to grab mine as if to comfort me. My body is shaking and I think he is expecting me to cry. Instead, I give him a small chuckle. “You fool. I think you ate too much of that free intestines soup at the temple today.” I push my brother away and slump back onto the ground.
“But, Orasa. I – “
“Go back to sleep.” I cover my face with the blanket and mumble. “If you talk about this nonsense again, I’ll beat the crap out of you.”
I hear my brother sigh in defeat as he scuffles back to his sleeping spot. I hear him shift uncomfortably at first but eventually his breathing levels, indicating that he has fallen asleep. I try to go back to sleep but my brother’s words keep haunting me. A fragmented image of my mother comes back. I can barely remember what she looks like. All I can see is that charred face with none of mom’s resemblance at the funeral. Despite the cold weather, my brow is covered with sweat, and my cheeks are wet with tears. I’m breathing heavily. I sit up, brush a wet strand of hair out of my face and rub a hand wearily across my eyes. I feel dumb. Crying doesn’t solve anything. It’s pointless now to go back to sleep so I stand up and take one last look at my brother before I walk out of our room. As I exit, I make sure that father isn’t around. I look first at the stacks of crates in one dark corner, then at the burlap lining the floor and the little sack of grains and water sitting between them. Good. He’s nowhere in sight. It takes me a minute to reorient myself, to remember where I am heading.
Father’s praying room is situated in a hut in the middle of the woods away from where we actually sleep. He says that the praying room is too sacred to have little brats like Awut and me running around. As I take a step out of our house, the cool air washes over my face and the moonlight drenches the whole night in dark silver. My heart pounds erratically in the way it does after running away from my drunken father when Awut or I have disappointed him. My train of thought halts when I reach a lake our family used to swim in when we were still a family. I hesitate but quickly shake the happy memories out of my head. I turn the corner and head towards a tiny, boarded-up hut with faded inscrutable words carved on its door.
Gingerly I climb my way over the wooden roof, and then listen intently for anything. Through the roof’s gaps, I see bald men in orange gowns chanting some prayers. I still can’t see the entire view but these men must be the monks my brother told me about. They are sitting in lotus positions and forming a circle but I can’t see what is in the middle of that circle.
I hear shuffling noises inside but they are soon subdued when I hear father’s shaky voice, “Please. Please. Please.”
I can’t believe my ears. The last time I heard him say such a polite word was when mom was still with us. My pulse quickens. I need to see more. I go from one spot on the roof to another until I finally find one that has a crack between two of its wooden planks. Father is standing furtively in the corner of his prayer room with his head in his hands. I see him reach for a small family portrait. The moonlight shining through the roof allows me to make out the image of father smiling in the picture. “Please release her,” my father suddenly swings our family portrait across the room. His breaths come in ragged sobs, and he claws his scalp in agony. Blood trickles down his face. The smell of iron from his blood fills my nose.
My father puts both his hands to his face and I hear him cry in despair. “The elders say it’s best that everyone thinks she’s dead. But I need her. Her children need her.”
I do not understand what he’s saying at first but then my brother’s words flood back to me. It’s too dark inside for me to completely make out the figure in the middle of the monks’ circle at first; but I notice that the one man who was sitting among the monks stand up and walk towards the figure in the middle. He appears to be wearing a different outfit from the monks. Instead of having his head shaved and wearing an orange robe, this man is in a white robe and he grows his hair and beard wildly. He holds out a long sharp object and after squinting my eyes, I realize that it’s a dried stingray tail. I gasp. I have never seen one up close before but the man in front of her eyes is the shaman. The elders once told me that there are two “beings” that can take possession of a person. There are tigers, which the elders call “phi pheu” and vampires, called “phu seu”. According to the elders, a person’s illness or drastic change in behaviors are caused by black magic called “tai”. Specifically, it is an object that is magically implanted in the body of the afflicted person by another person.
The shaman must then suck this object out before a cure can happen. In one swift movement, the shaman whips the figure with the dried stingray tail and the silhouette trembles wildly. The voice the figure makes is incoherent but I can see the anguish etched into every single crumpled, devastated muscle of the uncontrollable body. It does not take long for me to realize what or more specifically whom that body belongs to. The sound of her crying is so foreign that it tears my heart. I’ve seen my mother cry before, but never like this.More
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 are well on-track to achieve them — I run fast and she is the smartest person I know. 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 athlete 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.
Darn it, 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.
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 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.
Start slow and steady.
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 fool’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.
Why did my body disobey me?
Something is wrong.
My usually infallible confidence fails me and suddenly I am afraid.
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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.More
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 (firstname.lastname@example.org).