Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.
I am gravely inflexible. This might seem shocking to those who know me, since I write openly about being a professional dancer. A lot of my career depends on how willingly I stretch, and how openly I hide imperfections in plain sight. I am stuck at home these…
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 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…
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 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…
“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…
I had an experimental stem cell transplant five years ago and it was one of the best things I’ve ever done. In all honesty, I don’t actually know how much my stem cells helped because it happened during a confusing period. In the same six-month stretch, I found out I…
I’m going to say something that not everyone wants to hear: Just because we are sick doesn’t mean we get to be bad people. Let me explain. I have an inclusive dance company called Comebacks that I co-direct with an occupational therapist. Within this company, we have a variety…
I’m going to talk about something other than sickness for a second. But stay with me, because I’m coming back to that, too. By the time you read this, the Oscars will be a week behind us. A South Korean film named “Parasite” will have won best picture. And likely…
I compare myself to other people. I shouldn’t, but I do. Sometimes, other people seem nervous to compare themselves to me. “I don’t want to sound like I’m complaining about my health to you” is a regularity, and I never stop appreciating that sensitivity. We have all known that person…
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