Life in the Grey – a Column by Bailey Anne Vincent

breaking up, doctor mistakes, mask, body image, walk, pre-existing condition, perspective, slowing down

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.

Having a Rare Disease Is a Lot Harder Than You Think

Because we just honored Rare Disease Day on Feb. 28, I’d like to share what it’s like living with one. Having a rare disease means strangers telling you what your rare disease means, even though they’ve never lived or worked with it themselves. It means existing with stereotypes…

Denying My CF Is Making Me Hungry

I went to bed hungry last night, and I woke up scared of food. This is my new reality. Although this is an old-new one I’ve lived (and lived to forget) time and again, I still don’t have it mastered. Years ago, I couldn’t eat more than mashed potatoes and…

Why I Broke the ‘6 Feet Apart’ Rule

Staying 6 feet apart is not new to me. It’s not new because I have atypical cystic fibrosis and have been doing it for years. Most people know about this rule by now. They’ve either lived it, heard it (backwashed in this very column), or seen it in a…

I’m Already Scheduling Surgeries for Next Year

Today, I woke up and left for a doctor’s appointment. It was 8 a.m., and my eldest daughter was coming with me in case I needed an interpreter. I’m Deaf and fluent in American Sign Language (ASL), but I cannot read lips with all the masks, so we took this…

Maybe I Should Stop Writing This Column

I don’t want to write this column. OK, for the sake of my editors, let’s be clear: I love this column and this company and this job. I am so lucky to have it, and I honestly can’t imagine how I’d get through parts of life without a consistent…