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 name is Bailey Anne Vincent, and I am still alive. Hi. It’s me. I’m the problem. (Courtesy of John LaBarbera Photography) Three years ago, I was a long-running columnist here at Cystic Fibrosis News Today,…
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Someone told me I had a “dancer’s body” the other day, and I pretended it was flattering. “Thank you,” I said, since I hate refuting compliments (and believe intent matters more than execution), but inside I felt conflicted. Gross.
I’m starting to doubt the reasons why I doubt myself. Let’s start this column in a weird place: constipation. If one of my best friends is constipated (I bet you didn’t think we’d drop BMs into your DMs…
“What should I write my column about?” This is what I asked my Tiny Dancer the other day, while mass-prepping as many columns as possible before having surgery on my cervical spine. This is my third spine…
I canceled another doctor’s appointment. “I cannot get there in time and get back for work,” I said to my partner as I was writing this. “If I get stuck in traffic, or if it runs just a…
I want to introduce you to my gastric pacemaker. I’m not sure how many people know about her or what she does, and how she may have saved my life on more than one occasion. She wasn’t a fast…
By the time you read this, I will be going into surgery. I said that in my last column, which literally was titled “I’m Having a Scary Neck Surgery,” and I just had another one a month…
“If someone offered me enough money to take a break from work and recover, would I stop working?” I asked myself this the other day. My surgeon had just told me I’m having spine surgery again. I’ve known…
I wrote an entire column this morning and then threw it away. All 800 words — or 790, if I don’t want to annoy my editor. I wrote it, reread it, and thought, “This doesn’t feel right.” It doesn’t…
Get the second opinion. I used to think second opinions were for privileged celebrities who dared to defy the doctoral hierarchies of the world. Those who don’t mind being branded as a “doctor hopper” or an “inconsistent patient” because…
“I am not doing well at all.” I don’t like saying this. I don’t like saying this because I have children who read things. I don’t like saying this because I have students who see and worry. I…
I have thin privilege. I’ve said this before and I’ll say it again: This is significant because only those who benefit from the system can help break the system — and it needs to be broken. “I saw a…
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