CF Knocked the Shyness Out of Me

CF Knocked the Shyness Out of Me

July 27, 2020 | 5 min read
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Nicole Kohr
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Cystic fibrosis is a convenient disease to have if you want to look skinny in pictures and win a hotdog-eating contest. However, if you're the least bit shy or easily embarrassed, this is not the disease for you. When I was diagnosed at age 5, people asked if I was deaf because I didn't speak. I simply screamed if they came within 6 feet of me. In my defense, new people never meant anything good; just another person trying to get bloodwork out of me. Not to mention, my school kept explaining the “stranger danger” rule, and I obeyed the rules.

However, having cystic fibrosis beats the “shy” out of you sooner or later. One of the medical students who inserted my catheter was the guy from high school who I turned down for a date. A friend's older sister took detailed notes as I had an endoscopy with no anesthesia. I've had to show my rashy port-a-cath to every doctor in the state of New Jersey. I've had full-on conversations with people while I was on the commode. Needless to say, getting a sponge bath from the girl who cheated off of you in math class is a quick way to become a people person.

I suppose this is what led me to the theater. I had become so open and comfortable with my body that putting on a show came naturally.

I put on shows for my family. I made my friends perform musicals that I had written. I took my roles as leading lady and director very seriously. Even the guy folding shirts at The Gap got a full reenactment of my birth. Long story short, Mom signed me up for theater class. I was certified in Theater 101 at the age of 6.

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Theater was my escape from cystic fibrosis. It didn't matter that I was doing something weird or being way too graphic for my age. People in theater not only accepted me, they encouraged me. It didn't matter that I had to get a home IV because I knew that Peter Pan was waiting for me two weeks later. It didn't matter that a new person was about to take blood, because I could tell them all about Rent.

Unfortunately, my Broadway destiny took a slightly different path. I kept up with musical theater all the way through my senior year of high school. I mostly did community theater because I was hospitalized too often to even consider auditioning for school shows. During my last musical, I hid an IV under my costume. It was winter and I was battling a nasty case of Pseudomonas and Stenotrophomonas maltophilia. Sheer willpower got me through the performance, but the beaker of blood and my drop in FEV1 was a huge reality check.

I decided to perform in fewer shows (down from my usual eight shows per year) when I got to college. I was a lot sicker and shad a lot more on my plate. I was diagnosed with Mycobacterium abscessus my junior year of college, during which time I had to turn down an offer to play one of my dream roles. My friends went on performing, pursuing their degrees in the arts. I was confident in my decision to pursue public relations -- you know … insurance ... but my friends' social media pictures still hit below the belt. It was one of the darkest times of my life.

I decided to pull out the stories and music that I wrote when I was a little kid. I found lyrics about the hospital and about how I always felt like my cough was disgusting.

Something clicked. As my health continued to decline, I realized that there was another way that I could participate in theater -- as a writer.

I put pen to paper and -- within one month -- the lyrics I had written at age 12 became a full-length musical, Just For Claps. It was a new musical comedy about cystic fibrosis and a play on words -- clapping (percussion) and clapping (applause). No one got it, so I later changed it to Fall Risk.

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Last year, the Cystic Fibrosis Foundation gave me the greatest wedding gift of all -- an Impact Grant to produce my original musical. And, two weeks later, I received the second greatest gift of all -- a double-lung transplant. Finding a hobby and a passion allowed me to pull through the tough times of CF. I thought I was performing in spite of my cystic fibrosis. Turns out, cystic fibrosis led me to my passion. I hope the guy at The Gap back in 1996 sees the show and I hope that he is proud.

 Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Nicole is the writer and executive producer of Fall Risk, a new musical comedy about cystic fibrosis. She is a public relations graduate from Kean University, and certified in the theory and practice of Child Life from UCLA. She also authored a children's book called Two Cents, which is based on her experiences with critique related to CF. Nicole is proud to be an AbbVie scholarship winner and WEGO health award finalist. Nicole is an Impact Grant recipient, a patient representative for the Robert Wood Johnson Adult Cystic Fibrosis Clinic, a Regional Lung Transplant Conference patient representative, and public speaker. Nicole lives in New Jersey with her husband, mother, and twin puppies. You can follow Nicole on Twitter @cystic4real, on Instagram @sigurn1, or on Facebook. You can also email her at fallriskmusical@gmail.com.

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