Abstract
This is a short piece of narrative fiction about a high school student living with Becker’s muscular dystrophy. It is primarily based on the testimonial of a friend of mine, Nikolas Monks, who lives with the condition. In addition, it draws from the literature regarding many types of muscular dystrophy in order to paint a realistic picture of what life with these types of conditions is like. The project was inspired by stories that Monks had told me regarding the discriminatory actions that the American school system took against him throughout his childhood. The appalling disregard that people with authority had for the conditions of others was eye-opening.
My intention with this story is to bring awareness to the existence and reality of chronic conditions, while also exposing the unfair treatment that many people face. In our current world, it is obvious that medical literacy is lackluster, and therefore an informative source explaining the realities of health minorities will spread awareness and empathy. Additionally, medicine and health are not concepts only found in hospitals; they impact all aspects of everyday life. Understanding how current power structures discriminate against health minorities is the first step to correcting the mistakes of the past.
In order to create this project, I interviewed Nikolas Monks to get his personal testimony. I proceeded to research relevant facts related to muscular dystrophy and related medical topics. After combining all of these findings together, I developed a narrative that combined the important points of each source, so that the work is exhaustive and generalizable. The result of this narrative-crafting is the short story that constitutes my project.
The Run
With each pound of my shoes against the pavement, I felt a bolt of lightning rocket through my being. The rhythmic and frantic huffs and puffs of lungs starved of air thundered as if they were some great train racing down open paths.
“I have to be close. Surely, I must be nearing the end.” Such thoughts of optimism were present, but quickly drowning in my increasingly panicked mind. Through salty tears, my eyes scanned the road ahead. What greeted me may as well have been a desert. The empty sight confirmed what should have been obvious: I had long since been left behind.
It can be said that many people run from death. Its dark allure sends shivers into even the greatest of men. But the forces of fate had reversed my course. As others ran from their inevitable end, I sped towards it. My mind, body, and soul screamed for relief, or any sort of escape from this pain. I could almost feel the tissues of my kidneys shrivel up and die. But what could I do, except continue this process of destruction?
The growing despair is replaced with burning determination as I rip my mind away from such grim territory. This is possible. I only have to do this once, and then I am free.
“I can do this.”
My focus shifts externally, with an emphasis on anything that could distract me. Radiant beams from the sun slowly drain the strength from my limbs. The cool, spring air opposes my momentum as I run through the grounds of the school that has controlled my life for so long. Places of learning, of play, of solitude whip past as my progress increases. Each step closer and closer to the end.
But my actions were taken without precaution. The sudden cranial movement is accompanied by a great headrush that nearly throws me off balance. I attempt to steady myself, resolving to keep my eyes ahead and my posture consistent. As the universe continues to spin, I am greeted by the sight of an old but quaint building. A single-story, brown structure, baked with the nostalgia of simpler times. The site of countless childhood memories. Through tunnel vision, I dizzily viewed my old classroom. Or at least, my old classroom for a time.
Dazed, my mind wanders back to events long since passed.
The plastic chairs were surprisingly nice as I sat and ate a snack. The colorful wall decorations, toys, and furniture provided the perfect environment for one to enjoy a juice box and crackers. Many dream for the contentment that could be found in such a moment. With childish boredom, I tried to listen to what the grown-ups were saying. Even with their hushed tones, I could detect the rage in my mother’s voice as she reprimanded the teacher.
“How dare you put my son in here?!” she shouted as a whisper to the recoiling educator.
“He has a disability. This is a special education class. What else were we supposed to do?” the stunned teacher barked back in reply.
“Do you even know what muscular dystrophy is?” My mother took on a tone and posture that far outclassed anything I had seen after misbehaving.
I soon lost interest and returned to my meal, only to be plucked up and carried away by my furious mother. My confusion was replaced with joy as soon as I realized my afternoon of school was being supplanted by fun with my mom. As we drove away, I could not help but swing my legs in delight.
But the mood quickly shifted as I started to hear weeping in the car. It took a little while until my childhood brain realized that it was my mother who was crying. My befuddlement would only be temporary, as that was the day that I would first learn of my condit-
Reality slams into me as my foot collides with some interfering object. It takes quick thinking and a lot of strength to prevent myself from collapsing. Shaking off the jump rope that had snagged me, I returned to my stride. And so, the run just barely manages to continue, now with added embarrassment and an aching leg.
But, of course, a pained leg is the least of my worries right now. That day, when I was snatched from my chair, when I was told the truth, feels like a lifetime ago. Yet, I can still feel the words echo through my head. Muscular dystrophy… the word itself even sounds detestable. The syllables fall off the tongue as one would strike a metal drum. They almost feel… synthetic? And with such a term, a negative notoriety is all but guaranteed.
Even out of the people who know what muscular dystrophy is, few would be able to tell from a glance that I have it. People always anticipate someone in a wheelchair, wasting away as their muscles decay. There are some people like that, who have Duchenne’s MD. But as for me, I was blessed with its slower cousin, Becker’s MD. While they are similar in terms of diagnosis, Becker’s has a much longer prognosis. I could very well be graduating from this school in just a few months, and unlike the stereotype, I will do so standing up.
“To think, a silly rope just nearly put an end to all of that?” Amongst the screaming and wailing of each fiber in my being, I find an island of comfort, on which to chuckle. But this refuge can only last a moment as the run continues.
The body is supposed to be a very fine-tuned machine. One built with the capabilities to keep itself operating smoothly for the better part of a century. A perfect balance of chemistry, maintenance, and movements. The interactions of so many factors leave room for the smallest of errors to bring disaster. A simple mistake in a single gene can lead to a lifetime of issues.
It is natural for cells to live, divide, and die. It happens constantly throughout the body. For units of life so small and fragile, it is easy to imagine that the strain of physical stress could be too much. But the body is well prepared for such activities. Proteins, called dystrophins, protect the muscle cells from the harms and deaths that intense workouts could deliver. And thus, the body maintains itself in a healthy equilibrium.
Unfortunately, such protection is not guaranteed. The genetic mutations accompanying Becker’s MD make these dystrophins ineffective, to the point that regular movement can damage and even kill muscle cells. Over time, this will cause the very organs that hold me up and keep me alive to slowly waste away. Even worse, acute stress to the muscles can cause many cells to die simultaneously, resulting in them releasing myoglobin, an oxygen-storing protein, into my blood. The large buildup of this useful chemical could destroy my kidneys. Luckily, this sort of damage will usually only occur if I am doing intense exercises involving eccentric muscle contractions. I just have to avoid activities with lots of breaking, like lifting weights, excessive jumping, …and running.
Another tangent barges into my brain. That jump rope back there, I think it was a faded blue color. It was obviously newer than the ones the school had when I was at an age where such a toy could provide weeks of fun, but the color was the same. I wonder if the children still hold competitions determining who can jump the longest? I wonder if it still hurts as bad to lose?
I return my focus to the run ahead of me. The conclusion must be near. One way or another, this ends now.
Fortunately, Becker’s muscular dystrophy will not stop me from living my life. I should be able to walk well into my 40s and 50s, with little more than a cane or walker to reveal the devastation occurring inside of me. My everyday reality does not differ very far from the norm; clumsiness and difficulties with athletics can mean everything in the schoolyard, but once I escape, those can just be distant memories.
“It is amazing how much stock kids can put into a boy who can hardly jump rope,” I remarked as the engines making up my being roared with energy. “Children don’t know. And when they do, they don’t care.”
Through reminiscing and trying to resolve the puzzles of life, I feel a strong surge of anxiety rising. My kidneys sing a duet, urging me to spare them.
“Is all of this worth it? I can stop now. Perhaps it is not too late to give up.” I can practically feel the release of myoglobin into my veins. The subtle discharge of a self-administered poison shakes my confidence. For the first time, the fear that this run could actually kill or seriously harm me broke into my mind in earnest. My already quickened breath picks up in pace as the concept of such an early doom saturates every corner of my imagination.
With each burning step, the ground threatens to swallow me whole. My distress and despair attempt to aid the soil in pulling me down. Yet I stay resilient. After every foot smashes the path below, its successor follows close behind. I plunge deeper and deeper into a pit that I may be unable to escape from. Justified doubt starts to erode the determination propelling me forward.
“Why am I doing this?” I ask myself, despite knowing the answer too well.
All around me, the fields are empty. Students are in their classes, off to eat, or waiting impatiently for me at the end of this run. I struggle alone. To the buildings, doors, and roads, all I am is a blur; undefined and misunderstood. All I am to anyone here… is a blur. An enigma. A problem that is both confusing and not worth exploring.
Mere months separate me from leaving this place forever. The presentation of a small piece of paper can finally sever me from a realm of control and coldness. The years of being “the boy who can’t jump rope” or “the clumsy one” can be left behind. True freedom is within my reach.
But the rip tides of reality threaten to drown me.
All of those years ago, when I was first diagnosed with Becker’s MD, I was placed into that special education class. Even with that condition, the chances of me having any mental difficulties were slim. But that did not matter to those who saw disabilities as a monolith. Even with the insistence of parents and physicians, it took an intelligence test for those in charge to believe that I was worthy of fair treatment. It was easy to assume that this fight would permanently resolve these issues of ignorance. Unfortunately, the passage of time wipes away the momentary improvements of those who promise to be better.
For years, I was given alternative physical education courses, in order to accommodate my condition. I would be protected from potential danger, while fulfilling the desires of the school system. The arrangement was suitable. Tragically, the school made the bold decision to assume that healthcare was affordable.
Such a utopian thought does not help the citizens of reality, where even the thought of a doctor’s visit was bankrupting. How many years had it been since I was last diagnosed? Apparently, too long for the administration.
“Because, of course, I certainly have to have gotten over my muscular dystrophy in the last few years,” I spat out sarcastically.
And so, my final credit of physical education to graduate was forced into a realm I could not compete in. Years of accommodation were forgotten, in lieu of an appropriate challenge for my age. Obviously, success was practically impossible from the beginning. Now, my graduation rests on the edge of a knife.
Run. Run as fast as you can, or fail.
Do you destroy your body, or your future?
I let out an angered grunt in defiance of the illusion of choice. I have been placed here by ignorance, but I will not let it stop me. With strength I never thought I had, I push myself to my limits. A righteous rage fuels me as I thunder down the road.
“I can do this. I can do this!”
As if the heavens heard my determination, the end of my journey slides into sight. As expected, I am the last one still running. As my classmates see me, I can hear their jeers and insults. The sounds of school chimes marking the end of a class are replaced with bells of liberty. A newfound hope drives me forward, piercing through the waves of discouragement thrown at me.
I enter the last 100 feet as my confidence booms. With each step, my destination inches closer. Each huff and puff is a countdown to success. Each pain is just an afterthought as I rush forward.
As I close in on the finish line, I am boxed in by those who finished before me. They line the sides of the track like the trees that had accompanied me on this quest. The end of this forest lies just a few feet away. Faster than my brain can react, an anonymous foot strikes out in front of me. Before my mind can fully process the world around me, I am sent spiraling towards the ground.
Reality seems to freeze as I feel my body lose its fight against gravity. I thud against the asphalt with the grace of a corpse. The sudden reorientation of my body creates a headrush potent enough to blind me for several seconds. Every nerve in my body announces its pain simultaneously as I quickly realize that I lie just yards from my destination.
“I have used every ounce of energy I could muster. I just cannot make it,” I accept in despair. So many steps taken. So many limits broken. So many risks ignored. Yet, I lie on the failure’s side of the finish line. With the world spiralling around me, my head pounds unlike anything I’ve felt before. As if the school itself was binding me, I find myself unable to pry my being from the rough ground.
I raise my eyes, viewing a small gap in between the forest of laughing legs. Confronting me is the familiar, faded blue material of a jump rope lying just behind them.
“People don’t know, and when they do, they don’t care,” the culmination of years of apathy seemed to emanate from the toy.
“…But I care!” I stubbornly uttered as I whipped my head forward. Steadying myself with the searing road, I push myself up onto my knees. The crowd of mocking students suddenly reduces in volume, stunned at the sight that I of all people was getting back up. With my eyes closed and my teeth gritting, I will my body to stand up one more time, and courageously walk the final steps.
With a euphoric glee I cross the finish line, completing the run that I had battled for so long. My body’s agony is briefly obfuscated by the surge of adrenaline my final effort generated. Oblivious to the reactions of those who had undermined me, I step forward. The wind blowing across my face and the sun warming my skin have lost their adversarial properties. Rather, they seem to welcome me. A second chime from the school declares my success.
Completing this course has placed me on the edge of the school’s property. The buildings, people, and memories still exist behind my back, but they no longer envelope me. The maze I had flown through is replaced by something new; a wide, open world stares at me, full of possibilities.
A small part of my psyche qualifies this victory, ensuring that what happened before can and will occur again. But the dampening effect of such a discouraging thought is reduced by the realization that I had conquered everything in my path. Any life will be fraught with pain and hardship. This much is undeniable. What is important is that I fought for my freedom, and surpassed the limitations placed upon me.
I will see what obstacles stand in my way, and run past them.
Works Cited
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