"We Made a Theatre Community" by Nicole Kohr
I’m so honored to share my story within the Breathe Bravely platform. I have admired this program for years, almost as much as I admire each individual artist who is brave enough to breathe.
Similarly, my breath, performing arts career, and I have had a roller coaster journey. In my youth, I was painfully shy. At home I was a ham, memorizing and performing every Shirley Temple number I could get my hands on. In public, however, I clung to my mother with very antisocial intentions.
To alleviate this anxiety, my mom enrolled me in a Creative Dramatics class at George Street Playhouse. It was 1998. I was five years old and newly diagnosed with cystic fibrosis. To everyone’s surprise except my mother’s, I took to the stage like a fish in water, and it sparked a life-long coping mechanism that encouraged me to be brave. From that moment on, I dove into the world of musical theater - acting, singing, and dancing. I wanted to be in it, write it, watch it, and listen to it. If I wasn’t participating in a show, I was writing one. I did this until my body reminded me that I had cystic fibrosis.
For years, I spent an unhealthy amount of time avoiding my diagnosis. I was compliant, of course, as far as medicines and treatments go, but I didn’t like the label. If I was destined to be a Broadway performer, I refused to let the sick girl label or the frequent hospitalizations define me. I kept my disease a secret, especially in the theater community.
Sadly, my acting started to seep into my everyday life, and I lost track of my true identify. I would hide my IV’s, feeding tubes, coughed blood, symptoms, and diagnoses. All of this to partake in a show, an audition, or a community that I was desperate to stay a part of. Backstage crises became more frequent as my lungs declined. I couldn’t hide my cough or endure the 45 minute tap dance sequence. I couldn’t reach the high note. My original lyrics and mini musicals became sadder. Time between hospital stays grew shorter. Ironically, by avoiding my disease, I was distancing myself from my dream career.
When my mother and I sat down to discuss my college career, the BFA in musical theater that I’d been longing for was suddenly not realistic. I needed to consider my decline and the expiration date that I was given when I was diagnosed. “You’ll need insurance, a 9to5, and something you can endure,” my mother reminded me. “Theater will always be in you. It is you, even if it’s not your major.” She was right. In lieu of the BFA, I pursued a career in Public Relations and graduated at the top of my class.
My three year career in non profit was quickly trumped by my body’s unwillingness to move forward. I continued to be brave, but to my detriment. “I can do it,” I’d say stubbornly as I made the hour long trek to work with my secret oxygen tank. At least I got to belt “Defying Gravity” in the car on the way to work. That makes it worth it, right?
I remember my last day of work. I was simultaneously running a feeding tube bolus and an IV antibiotic. I shoveled in as many carbs as I could to balance my recent weight loss. I tended to my bloody cough by measuring my coughed hemoptysis in a beaker. My IV antibiotic leaked on the floor as I inhaled a few puffs of my cayston nebulizer, a silent neb that didn’t make much smoke. I quickly keyed constituent profiles as I stared longingly at my Shirley Temple photos that stood on my desk. There was no balance or boundary. The feeling that I’d crossed a line in terms of my body’s needs had become laughable. I paused and messaged my family, “I think I need to come home.” That was the day that I became a beneficiary of short term disability leave, then long term, and (eventually) social security benefits.
Between my “retirement” in 2018 and my bilateral lung transplant evaluation in March of 2019, I spent my time glued to the living room couch. I was horribly depressed and lacking the purpose and drive that musical theater once provided. I binge watched musicals and continued to draft a musical of my own. When I was being transported by ambulance to UPenn, I wrote to the Cystic Fibrosis Foundation:
“I know you don’t know me, and I’ve avoided you for so long, but I don’t have a community. I need a community right now. If I don’t make it through this transplant, please share my story. Attached is an autobiographical musical dramedy that has been collecting dust on my computer.”
Moments later, they sent me an Impact Grant Award application. My friend/co-producer and I quickly, virtually, drafted the application throughout my ambulance ride and transplant evaluation. On May 31, 2019, the day before my wedding, I received an email that we received $10K to produce “Fall Risk The Musical.” I was married on June 1. I was transplanted on June 14. The rest is history.
I didn’t necessarily thrive in a traditional musical theater environment because my body required more self care. And that’s okay. Because there was no musical theater community that bridged the gap between Broadway and CF, I made my own community. What a beautiful consortium we’ve built, one where performers can breathe AND perform. Join it… be brave.
Follow our journey from script to stage at fallriskthemusical.com and @fallriskmusical.
To listen to the amazing work of the Fall Risk cast, take a listen to their recent EP release below! This is created for YOU!