A footnote to my name

Writer: 
August 11, 2017

Whenever my elementary school class ran laps for PE, to not finish last felt like a victory in itself. Our gym teacher would yell out across the track, urging me to pick up the pace or admonishing me if my run turned to a walk. When my friends finished their laps, they’d stand on the sideline. Some would shout encouragements while others would loudly rib me for my apparent lack of fitness.

I hated the days we ran, not just for the verbal onslaughts, but also because running for an extended time makes my chest feel like it’s about to burst and my lungs feel as if they’re being held in a chokehold by a miniature wrestler. And yet, I never went to my PE teacher to express my concerns; nor did I ask my friends to lay off. I did none of those things because my diagnosis was not yet well-understood and because to admit I was different, and in need of special accommodations, seemed an unthinkable act.

I had already had a pacemaker and been taking beta blockers twice a day for a few years, but everyone—even my doctors, to an extent—seemed to think I should be a normally functioning young person. And they had every reason to. I spent my recesses playing soccer or foursquare with joy and vigor. The occasional pauses I had to take so I could catch my breath and slow my heart rate would fade into the chaos of a congested playground and go unnoticed by those around me. I preferred it that way.      

When I was consumed by intense bouts of tachycardia—my heart beating so fast I expected it to take flight from my chest—I would be walked, or carried, to the school nurse, who would tell me I was having an anxiety attack. She would say I could snap out of it if only I would take deep breaths and focus—if only I wanted it enough. Of course, that never worked. So, whenever it was a running day, I didn’t protest; I was afraid of what I might say. Instead, I marched around the track, slower than the rest, wishing I could be like the kids who effortlessly passed me by. 

During my freshman year of high school, I was given the terms to accurately describe my episodes. Anxiety attack was not one of them; tachycardia and Long QT syndrome were.

That year, while attending a school football game, I blacked out and was flown by a helicopter to Egleston hospital in Atlanta. I woke up a week later in the cardiac intensive-care unit. The pacemaker I had when I lost consciousness had been replaced with an Implanted Cardioverter Defibrillator (to shock my heart out of episodes), and I was left with a few more scars, courtesy of ECMO—shorthand for the treatment that kept my heart and lungs functioning when my body could no longer sustain itself. The cardiology team I’d been with since I was five, the team that watched me grow up and helped me navigate being sick, had—in the end—saved my life.

Yet, after years of thinking that voicing concerns about my heart and the fear I felt because of it made me weak or, worst of all, different, I struggled to articulate what I was dealing with even when I wanted to. For a long time, I had been unable to square what was happening in my body with what people told me was happening. That conflict saddled me with a creeping sense of anxiety, and I carried it with me to Duke.

One day this past fall, I was walking with a political science professor from Abele Quad back to his office in Gross Hall. When we reached the impossibly long steps leading up to the building, I quickly wrapped up the conversation and said goodbye. I knew my heart would need a break or two to get to his office without incident, but I felt doubtful of my ability to accurately describe my condition. Most of all, I was scared that I’d be misunderstood, and I worried that my heart condition would become the thing that defined me. 

Perhaps that last part is the most critical. As I’ve become more comfortable telling others about my condition, as I’ve found that people are willing to take the time to understand given the opportunity, I also have to admit that I have mixed feelings about the fact that no matter what I do, the footnote on my name will be this: also has a heart condition.

As an elementary-school kid cooking up grand aspirations for his future, I never factored in my heart condition, and I don’t want anyone else to. What I do want is to write like Emily Nussbaum-Meets-Lester Bangs, talk like an Aaron Sorkin character, and run like Rocky in a Philadelphia neighborhood. I want the possibilities to remain endless. On my worst days, it feels as though the fact of my faulty heart means they won’t. 

I forget that my illness isn’t me and have to remind myself that my heart condition doesn’t determine whom I love, what I dream of, or which ideas grab hold of me to incite change. I imagine it’s something I’ll have to remind myself of for the rest of my life. And all the while, I’ll keep pursuing goals, figuring out who I want to be, and—little by little—find my way in matters of the heart.

Parker is a rising junior majoring in political science; he wrote a column for The Chronicle last fall.