Columns

I am at a loss with loss. Yesterday, I lost my last remaining telecommuting job, my dance company (in the sense that we are now on a long-term hiatus), our show that was only weeks away (and has now been postponed), my keys, and my mind. If you’re like…

The excitement and flurry around the new combination therapy Trikafta (elexacaftor/tezacaftor/ivacaftor) brought a lot of hope to the CF community. This is a good thing. However, many complex emotions are not being addressed. Everyone expects a flood of challenging emotions when one transitions from healthy to dying, but what…

Lately, I’ve had a lot of fears. Like others in the global cystic fibrosis community, I’m self-isolating. I follow the CF Foundation’s COVID-19 plans religiously, and much of my county is sheltering in place, with most businesses closed. I’m fortunate to live with my…

We are currently experiencing something unlike anything we have seen before: a coronavirus pandemic whose magnitude is unprecedented in modern history. Two weekends ago, I was still celebrating St. Patrick’s Day at bars with my friends. By then, people were wary. I was advised against going, but having the mindset…

The cystic fibrosis (CF) community is handling COVID-19 in two ways. Some claim that people are finally getting a taste of life with CF. “We wore masks before it was cool,” they say (I stole that one). We always worry about germs. The coronavirus will impact us more than others…

A surreal winter, huh? Pandemic pandemonium. Over and over. “I can’t believe we even have to think about this stuff. COVID-19 is like fiction.” It’s real. I write this during week three of self-isolation. I ain’t scared for myself. This isn’t the first time I’ve defended against “biowarfare.” My…

My head has been spinning with how rapidly the effects from COVID-19 have engulfed the world. It is a great reminder from Mother Nature that humans are not invincible, despite what it may seem at times. I always have had two sides to my world: the businesswoman and the…

The invisible killer is nothing new. Something that can’t be contained? I feel that. Not knowing if or when it will hit you? Every. Single. Day. Cystic fibrosis is a monster. And so is having a transplant. There’s always an underlying fear of the untamable beast. Those of us with…

“My gut is the source of most of my sickness.” I say this a lot. I say it to explain why I’m not what I’m “Supposed to Be” as someone with cystic fibrosis (CF). I say this to help others understand. I have lung disease, light scarring, and varying infections…

A few months ago, I was chatting online with the parents of an infant who was newly diagnosed with cystic fibrosis (CF). They discussed how their lives would change and the precautions they’d have to take with CF in their lives. Most seemed sensible to me — no…