Lung, Scrappy, and Hungry – a Column by Nicole Kohr

The Importance of Frivolity on My Journey With CF

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…

Finding Your Identity in Matters of Life and Death

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…

Let’s Maintain Hope, Even When History Repeats Itself

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…

I Must Use My Energy Wisely, but Use It I Can

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 Shot’: What It Means to Be a Survivor

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…