‘You Two’: The Therapeutic Power of Pets for CF Patients
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,…
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’: Saying farewell to my column
“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…
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Why I Developed a Fear of Airplanes as an Adult With CF
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…
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…
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…
How I Turned My Cystic Fibrosis Advocacy Into Part of My Career
“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…
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…
‘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…
‘Dust and Ashes’: Feeling Like a Burden Kept Me From Being Transparent
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…
‘Watch What Happens’: The Importance of Writing
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…
‘When I Grow Up’: Aging With CF Is a Gift
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…
‘Welcome to the Renaissance’: A New Beginning for CF Patients
“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…
‘The Next Right Thing’: Overcoming Burnout
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…
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