Columns

The thought of having a critically ill child never crossed my mind until it actually happened. I’d hear or see stories about sick children fighting for their lives on television commercials and social media, but I never imagined I’d be that parent. So it was surreal when my 4-year-old daughter,…

My mother was recently cleaning out her attic, trying out the minimalist technique she’d seen on a Netflix show. In the process of deciding which items still bring her joy, she gathered a bag full of my school papers from childhood. Forty years later, she still couldn’t bring herself to…

Throughout my journey with cystic fibrosis (CF) and double-lung transplant, I’ve learned what does and doesn’t work for me when it comes to receiving support from others. Following are a few guidelines that have been effective for me, and I hope they’ll be useful to you, too, whether…

It’s the coughing. It’s always going to be the coughing with cystic fibrosis (CF). It makes everyone uncomfortable, whether they admit it or not. Everyone who knows me knows I can have a pretty bad cough that can be loud, harsh, and drag on for a long time. It’s…

In my nearly 31 years of life, I’ve watched technology evolve at a rapid pace. Millennials like me have watched cellphones, video games, and computers transform from their rudimentary beginnings into the efficient tools we rely on today. As an adult with cystic fibrosis (CF), I’ve also seen dramatic…

After years in a backstage role at my high school theater, I was pulled aside by the program director and told that, upon researching cystic fibrosis (CF), her staff had deemed my health too unreliable for me to continue working on shows. The confrontation was unexpected. I’d never missed a…

After I had a double-lung transplant six years ago due to cystic fibrosis (CF), it was hard to look at myself in the mirror. I would stare at my stapled chest, and feelings of disbelief and grief would bubble to the surface like never before. Thoughts raced through…

At least twice a week, as I’m lying in bed, I can hear the voice of Paulie Walnuts from “The Sopranos” whispering one of his famous quotes in my ear: “A man needs his seven hours. Keeps his mind sharp.” Aside from the hilarity of that scene, Paulie…

Last weekend, my wife and I went to Manhattan to see comedian Alex Edelman perform his one-man show “Just for Us” on Broadway. The show revolves around how he initially sneaks into a white nationalist meeting as a joke (he’s Jewish), but comes out of it…

“Is your child OK?” These perfectly well-meaning words from a stranger cut deep for me. Claire had just finished having a coughing fit in public on a recent road trip when a woman approached us. She introduced herself as a pediatric nurse and explained that she was worried about the…