Columns

We all have struggles in our lives that we don’t share on Facebook, with co-workers, or openly on our sleeve. Yet, so many of us jump to conclusions about the behaviors and appearances of strangers whose lives we know nothing about. Cystic fibrosis is an invisible illness, which means…

Recently, while I was in the political organizing world where I spend so much of my time, a random hospital memory popped into my head. It was of a routine experience from the days when my younger sister, Mary, a cystic fibrosis patient, was in respiratory failure. She was on…

This week, the university I both attend and teach at returns from Thanksgiving break, and I’m coming to terms with the realization that I’m afraid of the coming holiday season. This isn’t a new phenomenon; I’ve had a lot of bad luck in my life at the holidays. When I…

If I had a dollar for every time I’ve heard, “But you don’t look sick,” or “But at least you look good,” I’d be a millionaire by now. Can you relate? Living with a chronic, invisible illness that ravaged my lungs for 30 years tells me otherwise. I heard…

In honor of the release of “Tick, Tick… Boom!” I wanted to mention one of my favorite composers, Jonathan Larson, and one of my favorite Broadway shows, “Rent,” which he wrote when he was a young, struggling artist and chronic illness patient. The story, which follows a…

When I was a kid, at the start of every school year my mother would pay a visit to my younger sister Mary’s new teacher to share information about Mary’s cystic fibrosis. One of the items she would share was a “Super Cystic and Fabulous Fran Fibrosis” book. These…

I don’t remember why I said what I said to the little girl I had just met on the playground. “I have something called cystic fibrosis.” Maybe I was coughing or short of breath. Or maybe we were exchanging secrets in the tunnel bridge. I don’t remember what game we…

Lung transplant is a major topic for families of people with cystic fibrosis. In a recent column, I talked about what it was like when my brother, Bradley, spent several weeks in the ICU. The result of that stay turned out to be that he needed a…

Herbs have been an important part of my life for more than a decade. Herbal remedies play an essential role in maintaining my health. I also believe in science and support modern medicine. As cold and flu season rolls around, it might be a good…

Hiking has become one of my favorite activities since my double-lung transplant four years ago. Before the transplant, hiking would have never been in my vocabulary. Having cystic fibrosis meant breathing was a struggle, and I would get a bellyache of anxiety when people would ask me to go hiking…