‘Strangers Like Me’: An Open Letter to the CF Community

Nicole Kohr avatar

by Nicole Kohr |

Share this article:

Share article via email
A graphic depicting a woman on a stage with the words

Movie musicals are the hottest trend in the musical theater community right now. “Dear Evan Hansen” and “Tick, Tick… Boom!” are just two of the adaptations, and it’s rumored that “Tarzan” is the next show to move from stage back to the big screen.

Fans of the 1999 animated Disney film “Tarzan” and its 2006 Broadway adaptation have spent the first two months of the year imagining the casting of the upcoming dream movie.

In honor of this fun and inclusive viral trend, I wanted to write a welcome letter to the new members of the cystic fibrosis (CF) community — or as I like to say, the “Strangers Like Me,” a nickname inspired by the masterpiece song Phil Collins wrote for the animated film version of “Tarzan.” You might be a patient, caregiver, hospital staff member, friend, family member, advocate, volunteer, or ambassador — the list goes on and on.

Regardless, I wanted to formally introduce myself as the girl who was once estranged from the CF community, and as of 2019, the girl who will never leave it behind. I am the girl whose mother read every CF-related pamphlet she could find because there were no CF parent groups in the 1990s. Most importantly, I’m the girl who’s excited and honored to be your welcoming committee.

Recommended Reading
A graphic depicting a woman on a stage with the words

‘Changing My Major (Organs)’: A Chronicle of Bilateral Lung Transplant

If you haven’t read my previous columns, please note that I am proud to be a cystic fibrosis patient and a bilateral lung transplant recipient. But outside of participating in the Great Strides walk, an annual fundraising event hosted by the Cystic Fibrosis Foundation, I used to keep my disease on the down low.

I did this for two reasons. One, I was pursuing a career in performing arts, and the industry was very discriminatory back in the day. Two, I didn’t want to be known as “the sick girl.” Apparently, these feelings were not uncommon, and neither were the embarrassing moments that my mucus-filled body decided to make public throughout my childhood.

“I see myself as people see me/ Oh, I just know there’s something bigger out there.”

Neither my elementary school friends nor my high school friends wanted to talk about my bowel movements. I didn’t relate to the other chronically ill students, either. A handful suffered from leukemia, and I vividly remember the school’s celebration of their remissions, which inspired me. But overall, my journey with cystic fibrosis was too foreign and ongoing, so I kept my much-needed venting sessions quiet.

It wasn’t until my bilateral lung transplant evaluation in March 2019 that I felt the need to reach out to the CF community. My secrecy had become a detriment, and I needed a support system of people who knew what I was going through.

I started with Twitter. “I’m going to name my Twitter handle @cystic4real,” I repeated to myself with wavering confidence.

Adding “cystic fibrosis” to my public profiles was a huge step, and it was the push I needed. Before I knew it, I had over 1,000 followers on Twitter alone, most of whom were cystic fibrosis patients, and they all wanted to hear what I had to say.

“You decorate your hospital room when you’re admitted for a tuneup?! So do I!”

I posted pictures of my hospital stays. I created and uploaded funny videos. It was like I had my own secret fan base that distracted and inspired me. Although I knew we could never meet in person due to the risk of cross-contamination, I felt as if I’d lived next door to them my entire life.

“Ooh, these emotions I never knew/ Of some other world far beyond this place/ Beyond the trees, above the clouds/ Oh, I see before me a new horizon.”

My obsession with the CF community grew stronger from there. I started writing articles, connecting with others on social media, sharing posts, volunteering for public speaking gigs, planning Zoom play dates, and applying for grants. To hell with the audience who’d been ignoring me for years. Who knew I had a group of best friends waiting in the wings the entire time?

“Strangers Like Me” reminds me that I was once lost, separated from the group of people whose souls and experiences match mine. So, please believe me when I say I’m the girl who’s ready to hear your story. We probably have a lot in common. My pen is freshly inked, and I’m ready to mail you the latest pamphlet my mom found, or even hand it to you at the next Great Strides event.

Most importantly, I’m the girl whose heart is open and ready to embrace you — from 6 feet away — no matter where you are on your CF journey.

Come with me now to see my world/ Where there’s beauty beyond your dreams/ Can you feel the things I feel/ Right now, with you?/ Take my hand/ There’s a world I need to know.”

Sincerely, @cystic4real

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.

A Conversation With Rare Disease Advocates

Your CF Community

Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.