I was born a performer. So, of course, I couldn’t announce my cystic fibrosis without being the drama queen I am, and so at 5 months, my CF announced itself with a bang (in the pediatric ICU knocking on death’s door). After that, my family knew they were in for a wild ride (sorry, guys).
I was first introduced to dance when I was 6 years old. As much as I had my initial refusals and breakdowns, my first ballet class was life-changing — in more ways than one. There, I met my very first ballet teacher, who would later become more like a friend who encouraged me to keep going, and someone I will always thank for kick-starting my love for dance. I was engulfed by this thing called ballet, and not long after that, tap — my first love.
Tap dancing was something I knew I was good at. My first pair of tap shoes were my prized possession, and much to my parents’ disapproval, I sometimes put dance above my treatments.
In hindsight, that was definitely not a good idea, but I was not to be trifled with at 6 years old. Also, by CF standards, I believe I was relatively healthy. No one in dance knew I had a chronic illness, only the instructors. And, of course, they were ever so cautious to make sure I didn’t do anything too straining or rigorous; if they caught even a glance of me running out of breath, I had to take a break. I’m grateful for it now, really, but definitely wasn’t at the time.
Like I said, I was relatively okay for a CF kid, and the dance was even helping my lungs stay strong. During a tap routine, or even when performing on stage, in those five minutes of constant smiling and making eye contact with the audience I was the vision of perfect health. From the outside, you couldn’t tell I was rotting on the inside. Really, neither could I. Dance was my body’s home away from home. Every week’s dance class was a refuge, every year’s showcase was a dream come true. It was my life. Aside from daily breathing treatments, numerous pills, and hospital stays twice a year, dancing was my life. The stage, my home. Until it all came crashing down (told you I’m dramatic).
I remember sitting in the doctor's office suite when I was turning thirteen, lights off, watching Finding Nemo as my wonderful pulmonologist spoke to my mom in hushed, worried tones in the hallway. All I can hear besides Marlin screaming at Nemo to get away from the boat is, “transplant” and “worsening.” Silent tears ran down my face as I struggled to catch my breath.
Despite my protests, dance was no longer part of my life. No more Saturday dance classes. No more eight-hour show rehearsals. I was barely breathing, and not really living.
I’d say my long battle with depression and anxiety came about around this time, long before any serious transplant talk. With all these feelings, I had no way to get them out. The sadness, emptiness, and shame of not being able to do what I once did so well before ate at me. But then, as if by divine intervention, I sat down with a pretty notebook and a favorite pen … and started writing. Literally anything. Random words, song lyrics, sentences, doodles, feelings. Before long, I was writing short stories. Albeit, not good stories, but still. I had found something to replace the gaping hole in my heart left by dance. And it felt amazing. I felt whole again, kind of. I was still sick, fighting for my life on a constant flow of oxygen, but I wasn’t completely alone. I had my notebooks, my pen, and paper. I always write on real paper, in a real notebook. It somehow makes me feel like I’m doing something that matters, like my dancing made me feel. It took me a while, but I eventually realized that no matter what it was, it did matter. To me.
Gestures, by Morgen Nudel
Take the time
to run your fingers
through my tangled hair,
the dampened air
where I lay
my mind bare,
and take your time
in the moonlight writing
sonnets and poetic misery
for you, and try
to take your time
holding my hand
in one of yours
my heart in the other,
although they smell of
Eucerin and lavender,
memorize them, check them
like a calendar.
Don’t ever take your time
looking for mine, I’m always here
your horse and carriage; your kin
from which rose petals spring.
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