Columns

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…

I have a productivity complex: I feel like if I’m not being productive, I’m wasting my time. And yet, whenever I accomplish something, I don’t bask in the enjoyment of accomplishing that thing. Instead, I’m worried about the next thing I need to accomplish. The to-do list of…

I am becoming a supermodel. OK, not really. But, perhaps I can pretend? I’m traveling to New York with my daughter to take part in a beauty campaign for a company I’m passionate about. The reason I love them is that they…

I’ve spent most of my life hearing that the cure for cystic fibrosis is just around the corner. Just wait a few more years, they keep saying, and it’s going to be right there. Then a few years passed, and a few more, and the cure seemed…

I’ve written recently about getting more feedback and input from the CF community for this column. I love sharing my journey with you, but I’m only one person. Through this column, it’s my ambition to start some big conversations on the impact the CF community is…

A dad at the church I attend came up to me and said his newborn daughter had been diagnosed with cystic fibrosis. He looked tired; his motivation for telling me was mostly to ensure that the situation wouldn’t be a cross-infection problem (it isn’t yet, due to…

I have been in a huge rut for quite a while due to my health. I think people often have the perception that I’m always positive and happy. It’s probably because I often take a step back or hide when I’m not feeling so happy.