Columns

Imagine getting a $2.5 million hospital bill within days of putting in notice to quit your full-time job. That was the exact scenario I faced in February 2019. At that time, my daughter, Claire, had just been born with cystic fibrosis (CF) and spent 68 days in the hospital.

In my last column, I wrote about the psychological aspect of living with cystic fibrosis (CF) that I dislike the most: the focus on shortened life expectancy. This week, I want to offer more of an optimistic outlook, as I try to find balance in all things.

For a long time, the relationship between romantic love and disability was complicated for me. It’s taken time to heal from my traumatic experiences with dating. I honestly didn’t know what romantic love was until I met my fiance, Christopher. Because of my chronic health conditions, I was led…

Even though I already had one child when my daughter, Claire, was born, her birth was a pivotal moment in my life. I wasn’t just a mom anymore; I was a cystic fibrosis (CF) mom. With that title comes a lot of responsibility and weight. For me, it also…

I sat at the head of the table in my workplace conference room and looked out the window, trying to grasp what I needed to do during my break. The problem was, I couldn’t remember. Instead, I just kept looking out the window as Pixies’ “Where Is My…

For many years, I’ve had to endure the ongoing praise for life-changing cystic fibrosis (CF) medications. Let me explain. CFTR modulators like the most recently approved drug Trikafta (elexacaftor/tezacaftor/ivacaftor) have completely changed the way that many patients address the chronic challenges of CF. I’ve watched…

I’ve been away for a while, but not because I wanted to be. While I’d love to say I stepped away for something exciting, the only fun I had was seeing the film “Training Day,” starring Denzel Washington, and binge-watching TV shows from 20 years ago. It wasn’t…

“When can we get out of here?” my mom asks the group of doctors on their daily rounds. I’m in a hospital bed, tape tugging at my skin as a nurse unhooks me from an IV antibiotic. While she presses buttons on the machine, I reach over to the…

It started when I was pregnant. Halfway through my pregnancy, we were faced with the possibility that our daughter Claire would be born with cystic fibrosis. This news brought a physical and emotional sensation like I’ve never felt before. I didn’t just feel that she would be born…

In this column, I want to discuss something that’s been bothering me for a long time, so I’ll just go ahead and say it: I despise the fact that the topics of age and life expectancy are such a prominent feature of the cystic fibrosis (CF) identity. This…