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A game of luck

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MARCH 15, 2019

As I sat on the bleachers without the standard “Go Titans” PE uniform, I rubbed my forehead to alleviate an oncoming headache. Amid the panting and the excited screams of scoring a volleyball goal, a girl steadily approached the bleachers.

As she took a long swig from her water bottle, she angled her body toward me and said, “Must be so tough having to sit out every Wednesday.”

She noticed that I had winced from the pain and that I had attempted to cover my entire face to shield myself from the bright lights of the gym. Much to the envy of my classmates, my doctor’s note was like a piece of gold. I was the “lucky” girl who was excused from running dreaded laps, doing situps and participating in tedious soccer games.

I quietly responded as I folded my head in my hands, “I have a headache.”

Every time I tried to hold my head up, I was met with excruciating pain that almost caused me to yelp out. I could feel the muscles in my arms vibrating, burning and slowly dying out from holding my head up.

She scoffed as she fixed her ponytail and tied her shoelaces.

“Sure. You have one every Wednesday, right?”

Her unsympathetic response was hardly surprising. I watched her effortlessly glide over to the far end of the gym, where she resumed her position as goalie. When I was finally forced to lie down on the narrow, cold strip of the bleachers, I closed my eyes and briefly imagined what it would be like to flow through the world — always moving with no needed breaks and a pair of lungs that could breathe on command even after running laps around the gym.

As I lay down in isolation, I placed my fleece jacket over my face to block out the noise, but the constant shuffling of feet still rang clear. I clenched my fists to deal with the pain that bubbled through my legs, and I tried to steady my breathing. I was jealous of the girl who approached me on the bleachers. She could mindlessly perform pushups or pullups and not have to prepare for the consequences. Her harmonious movements would be in sync with those around her, with no awkward pauses. She would look normal compared to me — the girl who was lying down on the bleachers.

I grew accustomed to this exclusion. Though it wasn’t anyone’s fault, it often felt like it was mine. My own body refused most forms of physical exercise and thus prohibited me from participating with friends. I was often resigned to sitting on the bleachers alone. At times, I felt like my body was dictating my limits and forcing me to succumb to a hidden contract I had not signed up for.

But I wasn’t just excluded in PE class — I faced it in my classes, too. On a particular day, we had our dreaded AP World History test, which brought a bunch of restless sophomores to the library. As people tapped their feet energetically on the floor and frantically twirled their pencils, I scoured my email to figure out which room I would be taking the exam in as part of my disability accommodation. I carefully packed my belongings and headed out the door.

A friend of mine exclaimed at the entrance of the library, “Hey, the test doesn’t start till 2. I thought we were going to study together!”

I attempted to shuffle past her, as I didn’t want to be late.

I responded, “I have a little extra time on mine, so I got to go early.”

My friend’s brows furrowed as she continued to stare at me, stunned and speechless. Then, her mouth formed an inaudible “oh.”

She quietly lamented, “Well, that’s not fair.”

I didn’t have time to explain how my hand cramped up during exams or that I had to take frequent breaks.

“I guess you’re lucky.”

Her voice rose higher to emphasize “lucky.”

It was the second time during the week that I had heard that phrase, and it made me cringe. I felt like I wasn’t being taken seriously and that my accomplishments would inevitably be diminished. Despite earning a high grade on that exam, I heard whispers before class started such as “she didn’t deserve it” or “some of us actually had to work hard.”

Each time I heard those comments, I buried my nose deep inside my textbook as my eyes glossed over the words on the page. I couldn’t understand why I was so lucky to be given an equal opportunity as the rest of my classmates.

I never once considered myself lucky. I had worked hard through IV and breathing treatments to prepare for all my exams. I had no choice but to push through the dull aches and the sleepy side effects. Classmates couldn’t understand my struggle and often mocked me for “privileges” by stating that I was lucky. But now, I’ve realized there was some truth to their comments. When I shift my perspective, I recognize that I am lucky to be physically well enough to attend a university far from home. Luck comes in many forms, and mine is not diminished by the effects of myasthenia gravis.

Simran Khetpal writes the Friday column on having myasthenia gravis. Contact her at [email protected].

MARCH 15, 2019