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.
Chronic illness can feel like a competition. It can become a game of “who has the most badges,” like “minimum pieces of flair” in the movie “Office Space.” Who has the most symptoms and diseases? Who will win? Sometimes, we even post our badges online like identity pieces to…
I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…
This column is about colons. Someone needs to be studying the prevalence of colorectal conundrums in people with CF and correlated diseases, especially those in their late 20s and early 30s. The number of messages I get from friends and strangers about colons is miles long (possible colon pun). They…
I’m going to say something many people won’t like: I struggle with the word “disability.” In the eyes of society, I am technically “disabled,” but that doesn’t stop me from struggling with the term. If it isn’t illness keeping me in and out of the hospital (consistency is not my…
There are a lot of things I haven’t done. Things the internet says I should. I’ve never announced a pregnancy to overjoyed family members. Instead, I was a junior in college and scared out of my mind. I’d always wanted to be a mom, but I found myself crying on…
“There’s no other way to paint it. I’m in pain. That’s my life. And no one can help me.” That was what I texted my husband after the third day of injustice from my biliary system. For the past few weeks, I’d deluded myself into thinking that what I…
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.
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