Columns

In 2016, my family spent weeks in the ICU with my brother, Bradley, who had cystic fibrosis and was dying from sepsis caused by an infection. I can’t fully describe what it’s like to have a family member in the ICU, but I need to try, because the…

Someone told me I had a “dancer’s body” the other day, and I pretended it was flattering. “Thank you,” I said, since I hate refuting compliments (and believe intent matters more than execution), but inside I felt conflicted. Gross. Sad. I felt conflicted-gross-sad because the term “dancer’s body” should mean…

Are you living or surviving? Most cystic fibrosis patients have dabbled with this question. To what extent does your health guide your life, rather than love or ambition? I knew the answer back in 2018, but after my bilateral lung transplant in June 2019, things grew complicated. Letting go…

I’m starting to doubt the reasons why I doubt myself. Let’s start this column in a weird place: constipation. If one of my best friends is constipated (I bet you didn’t think we’d drop BMs into your DMs that fast, did ya?), she might complain a little to me,…

I’ve witnessed the greatest acts of love at my sickest. Whenever I reflect on how love has shone through on my darkest days, my misty eyes reveal how much someone has touched my life forever. Sept. 30 is National Love People Day. It’s a timely reminder to love others;…

I was evaluated for my bilateral lung transplant in March 2019. I was transplanted on June 14, 2019, and graduated from physical therapy two months after that. Although transplant facts are more accessible today than in the past, many patients remain in the dark, so I’ll tell you about…

“What should I write my column about?” This is what I asked my Tiny Dancer the other day, while mass-prepping as many columns as possible before having surgery on my cervical spine. This is my third spine surgery in less than a year. You’ll likely be reading this…

My sister Mary was just in the hospital for the first time in nine months. Though she was an inpatient over the holidays last winter, as so many cystic fibrosis patients often are, we couldn’t visit her because of the pandemic, which made the experience even more difficult. Nine months…

When the U.S. Food and Drug Administration announced two years ago it had approved Trikafta (elexacaftor/tezacaftor/ivacaftor) for some cystic fibrosis (CF) patients 12 and older, I carried what I considered to be a healthy amount of skepticism about the hype. Articles like this one from The Washington Post…

In honor of the mixed reviews of the screen debut of the Broadway musical “Dear Evan Hansen,” I wanted to write about something every chronically ill teenager has taken part in: disappearing. High school In high school, I was voted most likely to be absent during the senior superlatives.