Columns

Help! I’m Haunted by Old Photos of My Health

The worst thing about being a writer is being unable to escape old drafts of yourself. Would you believe that the photos you see here were taken on the same day? (See also the Facetune skills, circa 2015, that have since been forgotten.) (Courtesy of Bailey…

Being Brave and Making a Meaningful Connection

The cystic fibrosis (CF) community was in an uproar during the lead-up to the release of the film “Five Feet Apart.” Viewers had many reactions, such as the following: “It glamorizes our disease.” “There should’ve been more involvement from the CF community.” “But it creates awareness.” In this column,…

Here’s What It Feels Like to Have Cystic Fibrosis

There’s a rattle in my chest when I inhale. I sweat and dig my nails into my palm. I feel it, microseconds of dread and fear as the rattling gives way to something like the plugging and unplugging of suction cups in my airways. That quickly escalates into a “cough…

As a CFer, Birthdays Remind Me that Life Is Fragile

I can remember the day I discovered the truth that I had already suspected in my heart: cystic fibrosis (CF) is a life-shortening disease. I’m just old enough that I couldn’t Google whatever I wanted to at the time. I learned this information from a calendar sitting in my CF…

I’m Thinking About the Future

Sometimes it seems as if everyone knows what they would do in your shoes, and they are happy to tell you so. “If I were you,” they might say, “I wouldn’t even bother with college. I’d just travel the world. College takes up too much…

We Must Pay Closer Attention to the Global CF Population

Based on the stringent qualifications the Cystic Fibrosis Foundation uses to determine who has cystic fibrosis, approximately 70,000 people currently have CF worldwide. That includes 30,000-35,000 in the United States. In this broad population, many subpopulations fit neatly into the CFF’s qualifications. Others do not. As much as we…

Can We Take a Minute to Rest?

Reader, I am tired. I don’t need to explain how that feels to those who have cystic fibrosis (CF), but for the benefit of others, I will. It’s a kind of tiredness that halves my normal walking pace. It leaves me reaching for words…