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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,…

Growing up, I was lucky to attend school almost entirely uninterrupted by cystic fibrosis. I didn’t see the inside of a hospital for more than occasional appointments until I was 19. Until then, I saw no reason to do anything differently than the people around…

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…

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 am not a political writer. I am a political person, don’t get me wrong. I have no shame in calling myself “political” because I think that anyone with the luxury of saying they’re not interested is someone with inherent privilege. The ability to remain apathetic…

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…

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…

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…

Our society places great emphasis on success through careers. Whenever we meet a stranger, one of the first questions we ask is, “What do you do?” I feel this pressure despite my awareness that my illness makes it difficult even to predict what the next few months might bring. The…

“Up, up, up!” my 1-year-old said to me the other day with both hands reaching to the sky. I was having a really bad day, and I was tired and achy from long coughing attacks and chronic pain. “Mommy can’t right now, buddy,” I said. The letdown on his face…