Columns

As I write this, a large snowstorm is rolling over several states, and the forecast here is for accumulating snow in that relentless way that shuts down everything and has people rushing to the grocery stores to stock up. I am reminded of another storm, 30 years ago — the…

I turned 39 last month. Nearing the milestone of a new decade with cystic fibrosis (CF) feels like a big deal. Almost 40? Check. I’ve got some wrinkles and age spots! But let’s talk about the elephant in the room. Life expectancy seems to be the center of…

While the results of a recent study investigating how financial stress affects the cystic fibrosis (CF) community are alarming, they’re not surprising. I think it’s a perfect example of why this issue needs to be taken more seriously. For the study, published last month in the Journal…

Because of my cystic fibrosis (CF) and double-lung transplant, I receive Social Security Disability Insurance (SSDI). When I got my statement last month, my stomach dropped. With the cost-of-living adjustment, my monthly benefit had increased slightly. Sounds like good news, right? However, that increase pushed me just over…

“I’m freaking out — have you ever had a burst blood vessel in your eyeball?” This is a recent text message I sent to a dear friend. We’re not only friends; we both live with cystic fibrosis (CF) and have had a double-lung transplant. She gets me on…

Eight years ago, I walked down the corridor that connected the hospital to the clinical research wing. I arrived at what felt a bit like a movie set, but was actually the floor where clinical trial participants would receive intravenous infusions of either a placebo or the investigational drug. It…

Every January, society seems to insist that we reinvent ourselves. The new year calls for a new you, new goals, fresh starts, and clean slates. The message is always the same: You’re not enough as you are, and your goals aren’t ambitious enough. While sitting on my meditation cushion this…

People always say kids are resilient. I used to nod politely, not really knowing what they meant. But then I had Jasmine, my daughter with cystic fibrosis, and life rewrote the definition right in front of me. At 4, she already knew her routines better than most adults.

I’m no stranger to frigid temperatures and dark days, as it often feels like the tundra here in Vermont. As we approach the winter solstice, I’m reflecting on the symbolism of letting the light in after dark times. I was born in the wee hours of Dec. 22,…

Universal Health Coverage Day on Dec. 12 is a timely reminder of the critical importance of access to healthcare for everyone across the globe. The theme is “Unaffordable health costs? We’re sick of it!” This awareness day encourages world leaders to invest financially in protecting people’s health. The goal…