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In spring 2015 I began journeying toward a challenge I hadn’t known would come to fruition so quickly: lung transplantation. Concerned for my life, my care team had labeled my cystic fibrosis “unmanageable.” Blinded by my inability to admit when I was sick, I couldn’t realize that truth. Wanting…

My life feels like a walking disclaimer lately. It’s as though everything I do or say or write should come with the headline proclaiming “I have a pre-existing condition.” These words are everywhere; I can’t seem to escape the phrase. It almost feels like a justification, doesn’t it? As…

I’ve been bored during my six weeks of isolation. But sometimes boring is a synonym for peaceful. Yes, it’s been a peaceful time of silence and introspection. For example, in all my sitting around, I realized something really cool: I’m an amazing liar! I’m so good at it that sometimes…

I am drained. My current situation astonishes me. The United States healthcare system must change. Over the past month, I’ve dealt with some severe and unusual health insurance issues. Before I continue, I want to make it clear that this is not an attack on our healthcare workers or any…

As you may have noticed, the world is having a bit of a moment right now. I started self-isolating as soon as the first case of the new coronavirus appeared in my county, which means I’ve been inside for a long, long time. It turns out that it’s…

I am scared … but not for the reasons you’d think. I am worried about something I’m ashamed to admit: what happens when things go back to the way they were before. Not the eventual end to an endemic pandemic, of course, but the pace of how we used…

Self-isolation has caused an unexpected sort of peace to my daily life. Before you call me crazy, hear me out. I am usually constantly busy. I work several jobs, partake in countless hobbies, and fill silence with an active social life. I think that is the case for many young…

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…