You Learn (About Cystic Fibrosis)

“Fall Risk” is a new musical comedy about cystic fibrosis (CF) and transplant written by yours truly. CF education and awareness are very important to me. One of my favorite takeaways from the show has been how educational the rehearsals have been.

Last year, during dry runs for our virtual performance, the actors asked a lot of questions pertaining to the script.

“What is a nebulizer, and why would a person need a whole room for medicine? Isn’t it just, like, pills?”

“I thought people on oxygen can’t live without it even for a second, like when cops squeeze the cannula tubing during interrogations on TV.”

“I assume the surgery is the most drastic part of a transplant. Why do we spend so much time talking about the lead-up and the recovery?”

All of these misconceptions brought their lack of knowledge to my attention. I thought medications like prednisone were common knowledge. At that point, I decided all performers outside of healthcare workers and caretakers required Chronic Illness 101.

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Lesson 1: Emotions

Dark humor is a coping mechanism for me, so I tend to steer away from dramas. When you first read through the script, it can come off as sad. The dialogue requires a certain amount of comedic timing.

I’ve discussed the emotional burden that stems from chronic illness with my fellow CF patients Adam and Ashley, who are also musicians on the project. Patients never get a break from sickness; in fact, it can get worse over time. Many are driven by the reality that their life expectancy is shorter than others, and they’re constantly balancing the concepts of staying alive versus living.

This sparks a lot of conversation among the cast members, especially in regards to coping.

Lesson 2: History

Patients have had access to drastically different treatment options, depending on when they were born and diagnosed. When I was diagnosed with cystic fibrosis in 1996, Pulmozyme (dornase alfa) and Tobi (tobramycin) were the only medications available for CF patients.

The cast asked why “Fall Risk” is set between 1992 and 2011. I wanted to showcase how severe the disease was and is for certain patients, especially during that time period. While I’m thankful for the progress the Cystic Fibrosis Foundation has made, it does not remove the physical and emotional damage that accrued while treatments were being developed. Research milestones deserve to be remembered.

Lesson 3: Logistics

After learning how little experience certain cast members had with illness, it’s easy to see why parts of the script were hard to understand.

Because the Cystic Fibrosis Foundation awarded “Fall Risk” an Impact Grant, a program that provides up to $10,000 to groups or individuals who benefit the CF community, we were able to send props to certain cast members. This was a fun way to educate and help the performers get into character. Little things like oxygen cannulas and nebulizer masks can make all the difference when you’re teaching a person about breathing issues. While we can’t exactly send them for a lung transplant, nor would we want to, the hands-on tools help put them in a patient’s shoes.

In the new Alanis Morissette Broadway musical, “Jagged Little Pill,” the song “You Learn” discusses hard-to-swallow pills, both literal and metaphoric. Some of us have to learn the hard way what it’s like to go through a bronchoscopy with no anesthesia. Others can read an article about the experience. Either way, I like to think that “Fall Risk” is bridging the gap between chronically ill and healthy communities.

Education is a huge part of awareness. “Fall Risk” cast members are learning what it’s like to live with a disease like cystic fibrosis. I’m learning how few opportunities there are for allies to learn about CF, and the world is learning how to navigate a new normal.

Nicole shows off her “Fall Risk” T-shirt at home in New Jersey, in 2018. (Courtesy of Nicole Kohr)

Check back every Thursday to read more of my story.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.