Nicole Kohr,  —

Nicole Kohr is a cystic fibrosis patient, a bilateral lung transplant recipient, and an award-winning writer. After spending her childhood split between live musical theater performances and an isolated hospital room, Nicole returned to her roots - writing. The founder of Colie Creations Inc, her mission is to advocate for patients through storytelling.

Articles by Nicole Kohr

‘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 the 1996 fantasy-comedy film version does not. The children of Miss…

‘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 I choose to post on social media every day, an activity…

The Importance of Support Systems When Managing Chronic Illness

I recently discovered “Diana: The Musical,” which follows Princess Diana and Prince Charles through their short-lived relationship. Much like Diana herself, the show is severely underappreciated. I identified with Diana immediately, especially the pressure to keep up with enormous responsibility. I receive a lot of praise for my…

‘Everybody Fits’: How Neurodivergence Affected My CF Journey

In honor of National Autism Awareness Month, I wanted to write about neurodivergence, a term used when a person’s brain operates differently from what is typical (also known as neurodiversity). A few conditions that fall under the umbrella of neurodivergence include autism, Tourette syndrome, ADHD, dyslexia, and generalized anxiety.

‘I Believe’: Blind Faith vs. Blind Trust

I’ve written about coping mechanisms before and the various ways they’ve kept me sane during my journey with cystic fibrosis (CF). Some include writing, the performing arts, and a dark sense of humor. But there’s one I haven’t disclosed: trust. I’m a believer in blind faith, but not blind…

‘Schadenfreude’: Experiencing Pain and Solidarity

I became aware of the word schadenfreude during my first viewing of “Avenue Q” on Broadway. In the show, two characters discussed how one person’s pain could make another feel happy. As a person who’s often in pain, the concept startled me. The lyrics went on, “Making me feel…

Celebrating ‘Company’: Visitors at the Hospital

“Phone rings./ Door chimes./ In comes company.” — from “Company,” from the musical of the same name There was a time I wasn’t a fan of hospital visitors. Living with cystic fibrosis (CF), I needed hours of maintenance to appear clean and put together. I’d spend an hour in…

‘Big Fun’: My Make-A-Wish

Make-A-Wish is an organization that offers gift experiences to very sick children younger than 19. If a child has a dream, like becoming a superhero, Make-A-Wish will make that dream come true. I was lucky enough to be a Make-A-Wish kid, but I could never settle on a wish.

‘You’re Wonderful’: How Society Labels CF Patients

“Is one a crusader or ruthless invader?/ It’s all in which label is able to persist.” That’s one of my favorite lines from “Wonderful,” a lesser-known song in the Broadway smash “Wicked.” I was recently reminded of this song when one of my best friends, a fellow cystic fibrosis…