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.My body doesn’t work. This isn’t new information. But every time I get new information about a new way it doesn’t work, I feel a surge of emotion. “I think I’m sort of depressed today,” I told my partner, after a long morning of telehealth and treatments. “I just…
It’s Cystic Fibrosis Awareness Month, and I’m not aware of what that means anymore. I remember the first time I told someone I was being examined for cystic fibrosis. “You don’t look like you have CF,” she said. “They have a certain look.” She was a nurse who’d been through med…
By the time you finish reading this, you’ll have forgotten me. I worry about being forgotten more than I should. I’ve lost countless friends whom I remember at odd times and think, “Wow, I haven’t thought about them for so long.” I remember random celebrities like Jennifer Garner and…
I have written about many subjects, but I’ll never stop writing about one: Why are we hateful of someone else’s body? The internet is full of trolls. We shouldn’t give them more credence than we already have, but the worst kind of troll is a chronically sick one who believes…
Yesterday was Monday and I didn’t want it to be. The start of the week is often tough, but my aversion is misplaced. Mondays now aren’t that dissimilar from any other day, considering the world has all but shut down while sheltered in place. Mondays used to be busy…
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…
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