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.
One of the hardest things to deal with in life are the “unknown knowns.” This is what happens when you’ve had one too many surgeries, or just enough hospital tuneups, and you have a hard time letting go of what you can’t control. I am trying to prepare for a…
“I want to take my mask off.” I said these words to my daughters two days ago in a Barnes & Noble bookstore, even though I have pontificated novels to the contrary since this novel virus hit. In a world besieged by terms like “anti-masker” and “pro-mask,” I can’t help…
“Do you have an advance directive?” This is something most of us with CF have been asked before. For someone with a chronic illness, this question becomes as familiar as answering my name in one giant run-on sentence — “Bailey-Anne-Vincent-September-17th-1986” — and knowing what’s coming next. My name and…
“I’m worried about your health.” I have heard this more times than I can count. It’s normally a guise for criticism of how I’m eating, how I approached my pregnancies, or how I look. For a long time, I tried to appreciate the concern. That’s how we show love, right?…
Being a parent sucks sometimes. We talk about how we “don’t talk about this enough,” but then we sort of do through rose-colored glasses and funny and frustrated columns such as these. “How come you never write honestly about what it’s like to be a sick person raising kids?”…
I have gained weight. I’ve been trying to gain weight for years, kindly encouraged by my CF clinic. Many might find it odd that aiming for a mid- to upper-range BMI is a goal for the chronically ill, especially in a world rife with diet culture and diminutive proclivities. But…
This is my back. (Courtesy of Bailey Anne Vincent) My back is old. I’m not old … but my back is. Or at least that’s what my radiologist said after reviewing CT scans of a recent myelogram, in which serious degeneration raised cause for alarm. I…
Privilege. Everywhere we look, we see the word privilege, and it’s hard not to feel attacked or defensive for what we feel we can’t control, right? Poor me and my white, thin, cisgender body. It really is so hard to be misunderstood! To be clear, that was sarcasm. And to…
I have never liked the term “chronic pain.” Or at least I never used to identify with it. To me, chronic pain was something hashtagged online for those who don’t know why their body is hurting or how to “handle it.” Chronic pain is for people who get reiki and…
Sometimes I want to give up. This is awful to say and even sillier to admit. But it’s something I’ve been repeating more and more lately. Someone recently asked me for “tips on staying mentally tough,” and I wanted to reply, “I’m not.” Not right now, anyway. I constantly feel…
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