Columns

Hitting the trails on one of my favorite hikes, I spent the day atop a mountain, lying in my hammock and gazing up at the bright blue sky. The warm breeze filled my lungs and sparked a sense of excitement. Up there, I was completely alone — no one was…

Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky. While there, my parents explained what CF is and all the medications…

When my late daughter, Jasmine, was 8 years old, she never wanted to miss a party. Even when her lungs felt heavy and her breath was short, she’d insist on putting on a T-shirt and jeans, ready for any adventure that awaited her. She loved birthday parties most of all…

At 54, I’ve lived with cystic fibrosis (CF) all my life. Five years ago, I survived a double-lung transplant. Along the way, I’ve managed CF-related diabetes (CFRD) and spent nearly two decades facing stage 3 chronic kidney disease. I’ve lost one kidney and rely on the remaining one. It…

We typically celebrate an anniversary, but when you live with a chronic health condition like cystic fibrosis (CF), your relationship to certain days on the calendar can be a bit more complicated. They may not be milestones to celebrate, but they can still serve as reminders. I’m thinking…

Mornings with my daughter, Jasmine, who passed away at 27 due to cystic fibrosis, always began quietly. She would wake up before me, her hair still wild from moving around in her sleep. I would find her sitting on the edge of her bed, feet dangling, already thinking about…

At this point in my life, I find that the more awkward a situation is, the better. Maybe it stems from a lifetime of awkward moments — most likely. Do I make awkward situations even more awkward? Absolutely. Being born with a chronic illness — cystic fibrosis (CF) —…

A difficult aspect of grief is that, at some point, we may cope by becoming numb and calloused. This is not a weakness, but rather a deeply human response. We are a resilient species. We choose to love intensely, even knowing that such love may end in incalculable pain. After…

My relationship with sleep has always been complicated. Sometimes I wait until the very end of the day, when I’m so exhausted that I just collapse into bed. Other times, I toss and turn, adjust my position 35 times, and eventually fall asleep a few hours later. I’m also prone…

Note: This column describes the author’s own experiences with Trikafta (elexacaftor/tezacaftor/ivacaftor) and Orkambi (ivacaftor/lumacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last Friday, I attended a Rare Disease Day event hosted by the National Institutes of Health (NIH)…