Columns

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…

I would have died without a double-lung transplant. Those words still send chills down my spine. It’s surreal that my story could have turned out differently. I try not to dwell on it, but sometimes my eyes sweat with emotion while reflecting on that truth: I was dying…

Note: This column describes the author’s own experiences with Orkambi, Trikafta, and Symdeko. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In December 2019, I was working through my final year of a master’s degree in creative writing. Most…

When I hear a cough in public, my body tenses up and I immediately start scanning the room to see where it originated. (As a cystic fibrosis (CF) mom, I can usually find the source within seconds.) Then I try to make sure my daughter, Claire, who is 4…