Columns

A childhood friend whose husband is undergoing treatment for terminal cancer recently posted something on social media that struck me as smart. She thanked people for their concern, but then noted which kinds of offers of help were helpful, and which weren’t. I’ve both received and extended offers…

Before my double-lung transplant four years ago, I approached holiday seasons with trepidation. I wanted to spend holidays at home with my loved ones, so I’d do my best to stay healthy, as it always felt like one wrong step could land me in the hospital. But being in…

Have you ever heard the phrase “I can’t slow down or I’ll stop?” I’ve always operated that way. I’ve always been accustomed to pushing myself and “sticking it to the man.” This gave me energy. More importantly, I was afraid that if I slowed down and accepted my situation —…

“It’s not very romantic, swaddled in sweaty, soiled hospital blankets. It’s slow, it’s ugly. And it could happen to anyone — anyone — and likely will if they don’t meet a sudden, violent end. People don’t like to confront the inevitability of sickness, nor the inevitability of death.” Professor…

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…