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.At night I lie awake and I worry about you. I worry if you’ll drive home safely that night. If the ache in your chest is really a ticking time bomb, rather than a proton pump inhibitor problem known by most. I worry because I love, and I love…
My tattoos hold more stories than my scars. In a way, my tattoos are my scars — they’re just the ones I chose. After almost every major medical hurdle, I’ve decompressed through ink. It’s a way of choosing the needles that hurt me, instead of having them forced upon me.
I share a lot online. I share medical ups and downs whenever possible. I share the audiogram roller coaster of going Deaf. I share the ebb and flow of motherhood. I share the stormy tides of body politics in a world that doesn’t take kindly to stomas and scars. It’s…
I am going to explain what it’s like being in this body. But before you read this, you need to know it’s not because I have a “woe is me!” attitude or want condolences or pity. I am lucky to have this body. This body is lucky to have me.
It sucks being sick. This is a fact. But, contrary to popular belief, being sick doesn’t make you a better person. This is also a fact. CF friends are once in a lifetime. (Photo by Bailey Anne Vincent) I can be the most hyperbolic person ever. I…
This is an apology you don’t know I’m writing. The first thing I texted you today was “Nope.” It was in reply to what you texted me at 9:07 a.m.: “Have you seen an ENT yet?” You were gone before I opened my eyes, as our schedule so often trends,…
I am not a whole and complete person. All you have to do is look at my medical chart to know that this is a fact. I have a different doctor for every part of me. I am not an “I” or a “me” — I am the parts of…
Asking for help. It sounds so easy, doesn’t it? In the dance world, however, it’s almost impossible. In the world of healthcare, surprisingly, it’s just as difficult. Years ago, when I was dancing in a small company in Washington, D.C., I expressed worry over a potential injury and asked for…
This is going to feel like something you’ve read before. It’s going to say things like, “Don’t assume just because someone is thin they want to be this weight,” and, “It’s so hard being judged for something you can’t control.” All that is true. I have read the skinny-sick posts,…
“If we had a little girl together, that’s what she’d look like.” He said this to me recently while eating ice cream sundaes with our girls. I slowly turned, a knot in my stomach, scared to look. As I glanced at the little girl in the corner (enjoying time with…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.