Originally posted on CFRountable.
https://www.cfroundtable.com/autumn-2020
“Creating While you Cough: How Nicole Made Her Journey With CF Profitable”
I was always a business owner at heart. When I was eight years old, my mother bought me the laminator that I had been asking for, and I used it religiously. I was always that type A individual. As I grew older, however, my career path went down a windy road. I started out in the theater as an actor and worked my way up to community theater choreographer after several professional acting gigs in my youth. The overall profession became more and more taxing on my body, especially after I was diagnosed with M. abscessus. I knew I would have to take a more “realistic” path if I wanted to guarantee my own employment with insurance. So, I majored in public relations. This is where I found my second love: the creative aspect of the administration process. Logos, campaigns, and press…oh, my! I also minored in child psychology and became certified in the theory and practice of child life just in case my CF was cured so I could work in peds. Yes, CF created its obstacles, but overall forced me to be more creative and strategic with my career decisions. After working for a few years in a nonprofit organization, I published my first book and discovered my third love: writing and producing musicals about CF. Who knew all three loves would come together?
Things got off to a rocky start. I had an amazing musical sitting on my laptop, but no one, with the exception of my mother, was willing to listen. I started writing it when I was 12. I copyrighted it when I was 16, and it sat on my laptop covered in dust until just before my transplant in 2019. I knew early on that I would have to write something smaller to get my name out there—something that would identify me as a writer. So, I reached out to a few artists associated with my non-profit work. Within six months I, with the help of one of my artist friends, published Two Cents and I started my own LLC (for writing). I loved writing the book, but it was just a stepping stone. With my name on the map, I started blogging for everything and everyone. The blogs were conveniently timed because my health was declining quickly, so every story made for a good read. Reaching a FEV1 of 20% is what gave me that final chip on my shoulder that I needed to get my play off my computer. I sent it to everyone I could think of, including the CF Foundation, and asked them to read it. I also applied for an Impact Grant Award, albeit late because I was in the middle of my transplant evaluation. A friend, who helped with some of the budgeting, and I were awarded the grant the day before my wedding, May 31, 2019. I was married on June 1 and received my new lungs on June 14. That didn’t stop me from having a full staff of CF musicians ready to go by July 1. It was an uphill climb from there.
Most people underestimate how much work goes into writing a book or writing a musical. They’re both overwhelming tasks. You have to find a composer who understands your story and the style of music that you’re trying to convey. You need a strong team of people to help you market the show, apply for grants, ensure you stay on budget, recruit and cultivate participants, hold professional and semi-professional auditions and shows, send contracts, be a devil’s advocate for different aspects of the show, lighting, costume, and design. The list goes on and on…
Two Cents catered to a wide variety of people. I did that on purpose. I didn’t want my first book to be specific to CF. My mother always encouraged me to write about CF. However, the arts were my escape from CF. I never wanted the two to collide and, up until the day of my transplant, only a handful of friends and family knew that I had CF. I came out of the closet, if you will, when I was being wheeled into my transplant surgery. “Post everything!” I shouted to my mom, and she did. This gave me the freedom and the platform to write about cystic fibrosis. The only thing that I would not budge on—it had to be a comedy.
Fall Risk is a musical comedy about chronic illness and transplant. The show shines a special light on cystic fibrosis by chronicling the life of Gabriella Michaels, a CF patient being evaluated for double lung transplant. Gabby has just received a callback as the leading lady for a regional theater show. Now her family, her doctor, and her director have to convince her which aspect of her life is more important. Described as “this generation’s Rent,” Fall Risk will pull on your heart strings and tickle your funny bone.
I chose this business because being my own boss allows me to be as type A as I want to be on the days that my body is able and to rest on the days that my body is not. I do most of my business through recruitment or word of mouth, but the amount of logistics that goes on behind the scenes is a team effort. I do my best to team up with as many CF patients and CF organizations as I can, despite the competitive nature of grants and the arts. You can’t do it by yourself—healthy or otherwise, it’s not physically possible. It’s all about steadiness and endurance. We’re all fighting for the same cause: awareness, funding, and a cure. So, you must have some kind of team supporting you.
I’ve learned a lot about myself throughout this experience of business ownership and leadership. I’ve learned that there are no rules. Yes, there are laws that you have to follow. But there’s no one-size-fits-all when it comes to a disability, nor is there a one-size-fits-all for business. We’re entering a new era of remote access and online accessibility. If there’s anyone who knows how to multitask, cultivate constituents online, and handle the stress of isolation, it’s a CF patient. I’ve learned how to balance work, life, and health. I’ve learned that it’s not that hard to start a business if you do all of the research and have a couple hundred dollars. It’s incredibly difficult to upkeep a business, especially when you’re pushing yourself through your medication routine or a respiratory infection. I’ve learned that my laminator is priceless. I’ve learned that I’m even stronger and more resilient than I thought. And I’ve learned to believe in my own company.
Nicole Kohr is 27 years old and has CF. Nicole received her double lung transplant in 2019. She resides in Somerset, NJ, with her husband Jared. Nicole is an author, lyricist, and owner/executive producer of her infamous Fall Risk musical designed for the CF community. You can reach Nicole on her website: www.fallriskthemusical.com.