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.This column is brought to you by anxiety. My anxiety isn’t very nice to me. She knows I need to write a column today, and that it’s the only day I can do it, but also that I have a mile-long to-do list I need to finish quickly. She knows…
My friend wrote a column about me and it goes like this: “Have you ever sat and actually stared at the sky, following a cloud, watching it transform and dissipate? Have you ever seen a flower wilt in decay? Have you ever felt so physically miserable that you actually had…
“I need to change my language.” I said this to my rehearsal director the other day after realizing I said the word “adaptive” again. “I hate the word adaptive,” I kept saying with increasing intensity. “It denotes that something is more and something is less.” In dance, we use the…
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…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.