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Those of us who have cystic fibrosis (CF) each has a story about the first time we felt different from the other kids. That moment tends to have a huge impact on the rest of our lives and how we interpret every interaction with strangers and loved ones alike.

My chest tightens and I feel a lump in my throat as I try to race past the hospital where my daughter was born. Soon after Claire’s birth, she was transferred by ambulance from this very hospital to our regional children’s hospital, where we spent the next 68 days…

“I want to get a Popsicle from the ice cream truck!” M’s nutmeg eyes lit up when I asked her what she wanted to do. She was my best friend at the time, and my dad had brought us to the arts and crafts fair, where my mom had a…

I never thought I’d say this, but it’s my reality: I’m a diabetic. It’s hard to admit this is a part of my life now. Like most aspects of my health, my diabetes is atypical. It didn’t stem from a bad diet or excessive sugar intake, as most people tend…

First in a three-part series. As a cystic fibrosis (CF) patient, our community’s fight for a pipeline of new antibiotics and the research related to antimicrobial resistance remind me of the musical “Titanic.” Based on the sinking of the real ship on April 15, 1912,…

When I was a kid, my goal was to play second base for my favorite baseball team, the New York Yankees. When I realized that I couldn’t hit a baseball, arguably the hardest thing to do in any sport, I stopped playing. I also stopped playing basketball about the same…

Growing up, an often repeated adage in my family was “don’t have any expectations.” This was often reinforced during or after a health crisis related to cystic fibrosis (CF), in which some people in my family’s extended social network didn’t show up in the ways we’d hoped they would.

Being hospitalized for any length of time is a never-ending grind that never ceases to amaze me, both in good and annoying ways. I wouldn’t say bad, necessarily, but it definitely feels like I’m in a hamster wheel at times. As I write this, I’ve been in the hospital for…

“Intense.” That was the word our friend used to describe our daughter’s daily cystic fibrosis (CF) care routine. We were on the last day of a weeklong group vacation, spending every waking moment together. Prior to this trip, the only people who were familiar with the intricacies of our…

“Want to go for a ride in the car?” I ask my Australian shepherd and poodle mix, Azzie. It’s been a few months since I last trimmed his fur, so it’s grown out to the length that makes him look like a fuzzy Muppet. He wags his tail and pants…