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.It’s extremely expensive to have cystic fibrosis (CF), as I do. It’s extremely expensive to have any chronic illness. It’s extremely expensive to be sick. I’m beginning to wonder if the system has been accidentally rigged against those of us who are ill, no matter what we do.
I think the “if you just” culture is hurting sick people. Have you heard sentences that start with “if you just”? They often end by oversimplifying an issue that’s likely not that simple. I’m sick of oversimplifying health. The “if you just” culture is a bit like when someone…
“How am I going to get old like this?” I was watching the film “Thelma” with my husband last night, and five minutes into the opener, I found myself crying. I’m not a collector of antique things, but I am a longtime appreciator of vintage personalities. I love…
Note: This column describes the author’s own experiences with steroid injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Going in for injections is not that hot. (Photo by Bailey Anne Vincent) “Why do I do this every time?”…
During my three-year hiatus from my column, I endured the following: A cervical spine disk replacement, a sacroiliac (SI) joint fusion, a hip fracture, a second SI joint fusion (repair of the faulty first), a lower leg nerve decompression surgery, a surgery to replace a disk in my…
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, writing about what I like to call “anyone who isn’t genetically…
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. Sad. I felt conflicted-gross-sad because the term “dancer’s body” should mean…
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 that fast, did ya?), she might complain a little to me,…
“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 surgery in less than a year. You’ll likely be reading this…
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 little bit late, I will literally mess up my job.” Someone…
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