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…
Lung, Scrappy, and Hungry — Nicole Kohr
Nicole graduated summa cum laude from Kean University’s School of Communication, Media and Journalism; she became certified in the theory and practice of child life the same year. Nicole is a satirical writer in the cystic fibrosis community. Diagnosed with CF at age 5, Nicole spent most of her life hiding her disease. When she got a double-lung transplant in June 2019, she embarked on a journey of transparency, and now hopes her column, “Lung, Scrappy, and Hungry,” will inspire others to be transparent.
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“One Last Time” from the musical “Hamilton” is sung by the actor who portrays George Washington and sets Washington’s farewell address to music. It’s the perfect song for this breaking news: This is my final column. With that said, I can’t think of a stronger way to depart…
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…
The Broadway musical “Newsies” chronicles the true story of the New York newsboys’ strike of 1899. In the song “Watch What Happens,” Katherine, a journalist, scans through a selection of newsworthy headlines. The lyrics open with, “Write what you know,” a piece of advice all writers have been given.
The song “When I Grow Up” helps open the second act of “Matilda the Musical.” The show, which ran on Broadway, is based on the book by Roald Dahl and includes a handful of dark plot devices that the 1996 fantasy-comedy film version does not. The children of Miss…
“Welcome to the Renaissance” is the opening number of a musical comedy I discovered in 2019 called “Something Rotten!” The show follows the Bottom brothers through the development of a new play and addresses the plagiarism that some historians believe Shakespeare was guilty of. The musical, set in 1595,…
Burnout. Everyone knows the feeling, especially patients and their advocates. My burnout stems from the ongoing pandemic and the harsh contrast between government mandates and doctor advice. It stems from the quantity and quality of advocacy that I choose to post on social media every day, an activity…
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