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 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…
“You don’t look Deaf.” This is something I’ve been told while my best friend — who is hearing — was told she does. I’ve had a sign language interpreter turn to leave my hospital room because I spoke to them when they entered. I’ve been on the flip side of…
I don’t have anything to write. I don’t have anything to write because I don’t have anything left inside of me. I just got out of a stint in the hospital for a sinus-related exacerbation (among other things), and am currently on week two of home IV antibiotics. I’m tangoing…
I want to quit the internet. This is something I think about a lot. The more I share, the more I want nothing to do with it at all. Although I’m not on the YouTubes or the Facebooks, I continue to write on Instagram, in columns, and in print.
What’s inside me is more than just bones. It’s more than machinery invading foreign lands. Or darkness where organs used to be. Or wrongs and rights to chart and X-ray until I’m nothing more than gray matter with no name. Recently, one of my digital cystic fibrosis (CF) friends sought…
I am one of the 10 percent. The 10 percent cannot take the new, groundbreaking medication that will hopefully help cystic fibrosis (CF) patients for years to come. Some people cannot benefit from Trikafta (elexacaftor/tezacaftor/ivacaftor) because they recently had a transplant. For others, like me and anomalous genotypes, Trikafta…
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