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.
As a health writer, I hesitate to cover topics that don’t fit directly into my “brand” because it’s bad business. I’ve cared about human rights for as long as I’ve been a human, but “sticking to my lane” means medicine, motivation, and myopic magnifications of my own fragile frailty (physically…
I don’t have herpes. I need to clarify this. I don’t have herpes, or Hep C, or cancer, even though many seem to think I do. Although I empathize with the Herps and Hep sufferers of the world, I am going to lose my mind if another person comments on…
If I die from anything, it’s going to be food. I have gone without food for long periods of time. It’s something many people with cystic fibrosis or other chronic illnesses know too well. After my fundoplication surgery in 2015, I couldn’t eat anything denser than pudding while the swelling…
I’m supposed to stay away from my children. They may have accidentally been exposed to the coronavirus, but we won’t know for sure for a couple of weeks. The chance they were exposed is low. They ran into a large group of friends in the neighborhood whom we love, and…
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…
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