Columns

I wish my life was a Cameron Crowe movie. If it were, then after I left my doctor’s appointment this morning, things would have gone differently. If my life was a movie, my nurse would have been a kindly but…

Growing up with a chronic illness like cystic fibrosis has always bordered on terrifying, which is something I hadn’t quite come to terms with until recently. How does a kid respond to concepts of mortality and suffering, anyway? Parents of kids with CF often…

My column focuses on working life and professional ambitions for people with cystic fibrosis. I write it for two reasons. The first is to speak to carers, parents, and young people growing up with CF on the spectrum of a hopeful future…

Heard enough about “Five Feet Apart” yet? I know you’re begging to read just one more piece about it, right? I saw the movie about a week after its release and wasn’t planning to write about it. Certainly not about how ethically (and cinematically) good or bad the…

For nearly three years, I’ve worked alongside brilliant CF doctors, scientists, and PhDs at a great research hospital. Before that, during college, I worked closely with CF scientists and PhDs at the University of Kentucky. All in all, I have about five years of experience in CF science.

I am a liar. OK, not in a bad way. As an actual profession, I am a liar. As a professional dancer, it’s my job to “lie” to the audience in show after show by transforming into an entirely different character.

Many young professionals burn the candle at both ends, especially when the temptation to fit into a big city’s lifestyle lurks. Somehow, they continue to function as productive humans — for the most part. But a person with cystic fibrosis (CF) and those in their…

Note: I do not write on behalf of the entire CF community. No one does. This is about my preference. The most amusing, yet irritating, thing a person without chronic conditions can do to me is correct the language I use to talk about myself.

The CF community’s strength is in its powerful, far-spread voice. For people with a chronic disease, and doubly so when that chronic disease is rare like CF, it is critical for the community to be involved and educated. The CF community is exactly that. When a perfect storm…

When you have cystic fibrosis, having hobbies is an essential part of maintaining mental health. It gives you something else to focus on and to pour yourself into, alleviating your worries and taking your mind off things, at least for the time being. But what happens when life becomes difficult…