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.
I am having surgery in a few weeks. Again. It will be my third surgery in roughly eight months’ time, though I don’t know why I’m counting. I dislike people who count these things. Are we bragging? Am I bragging? Sort of. I tend to say “I average about…
“How do you keep going?” This is a question I know all too well. I’m not sharing this question in the same way that my eldest daughter “complains” about her extra-long eyelashes. (Like, we get it. It’s so hard.) I’m sharing this because sometimes sharing is all we can do…
I hate the burden of feeling like a burden. I feel it all the time. I felt it last week when I went on a “bubble vacation” with two of my closest vaccinated friends. I felt it this week knowing I won’t be able to attend my cousin’s funeral.
“Meeting Corey at 2 to walk in the park,” my mom texted me at 8:14 a.m. “Want to come? I know you don’t feel well,” she said, rounding it off, “but didn’t want to exclude you.” And that was how my mom began and ended the most perfect text in…
I am a creature of habit. So much so that it’s easy to forget that other chronic illness patients deal with their conditions in completely different ways. (Wait, we don’t all watch “Love Island UK” and cry until we need Liquid I.V. in our tea?) But recently, I decided to…
I am writing this from my bedroom — trapped. Like a character in a movie. Or Jim Gaffigan when he talks about being outnumbered. This is my SOS letter to you, The Column Reader, saying: “Send carrier pigeons. Send string cheese snacks. Send Supernanny. Send help.” I am…
I just had surgery again, and now more people will follow me. I don’t want to write about the surgery (again) because it’s the same one I had a few months ago. Even so, a few months from now, when I’m no longer bemoaning my moaning or showing…
This is what I need. I’m going to tell you instead of my doctors, because that’s the life of a chronic patient. Even though I will tell my team, and I adore them, their hands are tied, because I am not a whole person. Instead, I am chunks and pieces,…
“I am sick of being a woman,” I say far too often. “Especially a sick one.” Maybe you’ve read this before. I’ve probably written it. But it begs repeating. It’s hard seeking healthcare as a woman because our concerns are quick to be dismissed, our symptoms swept under the rug.
Chadwick Boseman is dead, and I’m going to write about it. He has been dead for seven months now, so this isn’t breaking news. Even so, I remember exactly when it happened. It was the same day my Aunt Joyce died, and I remember thinking how strange it…
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