My journey with cystic fibrosis (CF) has been somewhat traumatic. My diagnosis was drawn out, leading to lung scarring at an early age. My two nonsense mutations limited my pipeline of treatments, and my quick decline in lung function left me with many Sophie’s choices. Most traumatic, my…
Lung, Scrappy, and Hungry – a Column by Nicole Kohr
In the musical “Little Women,” each of the four March sisters has an artistic talent. Jo March’s song “Astonishing,” a feminist lament about her ever-changing path toward writing, is particularly moving. It reminds me of my struggles as a woman with cystic fibrosis (CF). “I’ll shout…
The song “You Two” from “Chitty Chitty Bang Bang” inspired my dream of adopting twins from a young age. To this day, I’m not sure if the kids in the musical were written to be mere siblings, but I took them to be twins all the same. I…
As a cystic fibrosis (CF) patient and advocate, I’ve been asked to travel to multiple out-of-state events, but I’m afraid to travel by airplane. I haven’t always felt this way. I’ve only been on an airplane five or six times in my life, and most of those experiences…
I’m thankful to be alive. I was supposed to leave this world before I was 10 years old. At least, that’s what the data suggested when I was diagnosed with cystic fibrosis (CF) back in 1997. Much has changed since then. I like to think my own stubbornness, my…
I recently watched the 2021 remake of “West Side Story.” It was my first viewing of the musical, a surprising twist if you’ve read my columns. In short, I’m obsessed with musical theater and its parallels with the cystic fibrosis (CF) community. “It’s like ‘Newsies,'” I said as…
“Something Rotten!” is one of my favorite Broadway shows. I wrote about this musical comedy before in a piece titled “‘Welcome to the Renaissance’: A New Beginning for CF Patients.” This week, I wanted to use the show to discuss a different subject: What happened when my passion became…
When my body feels like it’s running on fumes and I’m in need of a pick-me-up, I watch the musical comedy “Once Upon a Mattress.” The story, which famously starred Carol Burnett in various roles on Broadway, follows a selfish queen, her adult son, and the affected kingdom. The…
My family and I were finally able to see the Broadway sensation “Hamilton” live on stage at the Durham Performing Arts Center in North Carolina. I’d already seen the pro-shot film on Disney+ and memorized the entire album before that. Still, getting to a live show has been a…
My biggest fear as a child was being a burden to friends and family due to my cystic fibrosis (CF). I spent my life avoiding this label by being overly cooperative and tolerant. In short, I was the kid you didn’t have to worry about. Ironically, everyone should…
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