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.If I were a doctor, I would say hello and ask a couple questions about the individual first. That way, they would feel like they’re a person, I’m a person, and we are two people who can talk about health. I would not act like the doctor I spoke to…
“Is this what I’m going to do forever?” I asked my dad. We were waiting outside a lab that hadn’t received the necessary fax to draw my blood, even though we had called and confirmed with my doctor’s office hours before. I had emailed my primary doctor earlier in the…
To the doctors who didn’t listen to me: You were wrong. I remember the time I arrived in the ER six years ago, a place I mostly refuse to go, and you said, “Go home. You have vertigo.” You were a female, which I thought would work in my favor.
I am having trouble sleeping. Everywhere we look, it feels like the world is on fire (both figuratively and literally). And if it’s not in flames due to human negligence or greed, it’s certainly engulfed in political firefights. And the worst kind of political opinion is political opinion that isn’t…
If I die, will it make you better? This is the storyline that appears in almost every movie ever made about sickness. We know and love the tragic trope well, but how well we handle unwellness is most often captured by the Sick Savior Complex. No star-crossed sickness saga is…
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?”…
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