The biggest stage I've ever performed on wasn't really a stage. The flooring consisted of AstroTurf, the air smelled like popcorn and fall, the theater was open to the air and filled with seating for 110,000 fans. There were even camera crews for a national audience. I was in the marching band at a Division I university, and we performed a pregame show and a new half-time show for our football fans every Saturday.
Before I sprint onto the field for the pregame show, I take a deep breath. In through the nose, out through the mouth. Or I try to. That's always been how my teachers and mentors told me to find a moment of calm: take a moment to breathe.
But it doesn't always work that way for me. There's this ever-present rattle when I inhale too deeply. My chest is always tight like I can't get enough air. Instead of helping me find my center, deep breaths make me leery of what's to come. But leery and nervous don't matter. The band marches on, and I'll be in my spot with them.
I've always been a performer. When I was little, I told my parents I wanted to be a ballerina. I spent my youth performing in jewelry-box auditoriums with velvet seats. But when I was little, I was also diagnosed with asthma. For the 24 years since, I've lived with severe, persistent asthma. For as long as I've been sentient, I've had to push through its roadblocks. Chronic illness, like performing, is also a part of who I am.
Being a performer is a special kind of thrill: constantly striving to be better, be prettier, move more effortlessly. And then having the opportunity to show the world the work I've done. I've never been the best ballerina or dancer or color guard member. But being a performer was always my favorite experience.
The daily question in my life became which identity would win out. Would I get to spend the day working to be a better dancer or a better guard member, or would I need to sit out that day? Could I make it through a whole rehearsal, or was today a day where every repetition would need to count? How could I balance the needed number of run-throughs while still respecting the boundaries of my health?
From a young age, I knew I couldn't do everything my peers were capable of. Some days I would come to class ready to rock, but some days I was sick and had to settle for watching my classmates work to improve. But I can't blame it all on my breathing; I also wasn't a naturally talented ballerina. I didn't have the physique, nor did I have the strength and power I needed for jumps and turns. Also, I was stubborn and thought I knew best all the time. Needless to say, progress was slow in my endeavor for a career in ballet.
By the time I reached high school, I was tired. I was tired of fighting my illness, tired of not excelling, and tired of feeling like I was trying hard with no reward. I loved ballet, but it felt like ballet didn't love me. So, I started to look for something that felt like dance but something that I could be more successful at. Something that pushed me to continually improve while allowing me to express myself and my identity as a performer. And I met my second love: color guard.
Color guard allowed me to be dramatic and explore my creativity in a way that was less restricted than ballet had been. It demanded fewer hours per week and was much less physical (at least in high school). I was able to support my identity as a performing artist without so much disappointment and pain and I continued spinning in the color guard until I graduated. Then I joined my collegiate marching band.
But when I was 19, my health took a turn for the worse. I was an active freshman, working out, taking part in clubs and sports, but when I was a sophomore I was sick all the time. There were days I couldn't leave my apartment, and I had more ER visits due to my asthma than in the last 4 years combined.
My doctor used to ask me what my goals were for treatment. How would we know we were making progress in my asthma control? That question has always been my favorite: it gives me some ownership of my treatment and trajectory. It helps center treatment on my life, not on some metric like peak flow. That year, I remember the answer I gave was to go to class every day of the week, a feat I hadn't been able to manage in weeks leading up to our visit. I wanted five days of manageable health in a row.
Meanwhile, when I could, I went to band rehearsal. If I was feeling particularly unwell, I'd sit on the sidelines and watch. I missed out on performance opportunities due to my health and missed rehearsal time. And my instructor often fought for my right to be on the field, but I think it was also hard for her to watch me struggle and then insist I was capable of performing. Once, I even overheard my instructor talking to the other directors, saying, "If she doesn't want to take part, why is she here?"
In a way, her question resonated. The intent might have been to question whether I was misrepresenting my condition, but she had a point. If everything was so hard, why put myself through grueling and draining rehearsals?
I remember that first pregame show so vividly. More than 200 marching members of the band do that show, and they're all lined up at the entrance of the field, waiting for tempo whistles from the drum major. At a speedy 220 beats per minute, she gives the cue and all 200-plus of us rush out, sprinting to the beat.
For the sixteen minutes of that show, under the lights, listening to 110,000 fans clapping in unison. Seeing a smattering of color in the stands that feel 20 stories taller than me. In those moments, everything else melts away. The pain and cramping from exertion. The shortness of breath and chest tightness. It's all gone.
Performing in the stadium always took my breath away. Figuratively and literally. The first time is special, sure, but that feeling never gets old. For those sixteen minutes, I wasn't the only one gasping like a fish out of water, and I certainly wasn't the only one with the biggest smile on their face.
I found my recovery moments throughout, sucking down oxygen like I could store it for later. But I never noticed how light-headed I was until after I finished. To be proactive, I took my inhaler in the tunnel between the parade and the show (to the chagrin of some teaching staff). In the mornings, I also packed out an inhaler for the stands. If I needed to use it during the game, I had to sit down out of view of the cameras, but it made me feel safer having it nearby.
That was how I balanced it - the need to be out there, moving and performing with my band family and also being sick. Any day we did a full run-through was terrifying, about 2/3 of the way through I was convinced I was about to pass out. But every Game Day Saturday was worth it.
New treatments gave me better control of my asthma in time. In exchange for biweekly injections, I could go to class again. And I could march in the band consistently again. I could work and I could move. It wasn't perfect, but to not feel so confined by my asthma was freeing.