Columns

Several pieces of my life puzzle happen to be rare. First thing’s first: I have cystic fibrosis (CF), a rare disease that affects about 40,000 people in the United States. (The U.S. Food and Drug Administration considers a disease rare if it affects fewer than 200,000 people.)…

“Mommy, what was that?” The wind whistled against our house, reaching 50 mph. We’d already lost power once in a precautionary outage. Meanwhile, communities less than an hour from our home were burning to the ground. While we weren’t in imminent danger, I was worried. As a native of Southern…

Is it just me, or did January feel like an entire year all on its own? From drastic political shifts to devastating wildfires, extra-cold temperatures to egg shortages, a surge in influenza activity to outbreaks of tuberculosis, 2025 has been exhausting so far. On top of everything, I feel a…

I’m willing to bet that when people perform random acts of kindness, they’re not so random. It comes from the heart’s desire to do something kind for people. I also think it’s a matter of paying it forward. I know that when others do something kind for me, it ignites…

“It’s been over a month and I don’t feel right,” I tell my mom as we’re making dinner. She’s mixing Caesar salad dressing and Parmesan cheese into the fresh lettuce I bought from the farm stand. I rub my rib cage where it’s sore, then slowly lift my arms above…

It’s extremely expensive to have cystic fibrosis (CF), as I do. It’s extremely expensive to have any chronic illness. It’s extremely expensive to be sick. I’m beginning to wonder if the system has been accidentally rigged against those of us who are ill, no matter what we do.

I just celebrated another year on this planet in December. My birthday has become a time of deep reflection as I age with cystic fibrosis (CF), sprinkling in an added layer of life with a double-lung transplant. Now I’ve turned 38; I’m growing older. I don’t have gray hair…

“I hate my treatments. I don’t want to have cystic fibrosis anymore.” That statement came during a recent night with my daughter, Claire, who has the disease. I was trying to persuade her to complete her breathing treatment, but I was facing resistance. As parents of a…

I think the “if you just” culture is hurting sick people. Have you heard sentences that start with “if you just”? They often end by oversimplifying an issue that’s likely not that simple. I’m sick of oversimplifying health. The “if you just” culture is a bit like when someone…

This month, my beautiful daughter, Claudia, will celebrate her 29th birthday. I was 24 and living with cystic fibrosis (CF) when I became her mother. It’s now been four years since my double-lung transplant, and I’m currently fighting COVID-19 for the fourth time in four years. As the…