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.
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…
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…
Who would I be if I lost the parts of me that make me … me? At the height of my back pain — which is off in the old place, on in the new — I can’t sit up for long stretches to write, or stretch myself to…
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…
Yes, sickness is giving me a panic disorder. Let me explain. No, there is too much. Let me sum up: Never knowing exactly what to do or who to call or what the protocol is with every new symptom, in a body that creates new symptoms annually, makes me long…
I don’t know if I believe in miracles. I know that what makes a miracle miraculous is its infrequency and lack of scientific reason, but I often wonder: How come some people deserve them while others suffer relentlessly? For anyone who doesn’t know a lot about cystic fibrosis treatment, a…
I am never going to be well enough to work out. I realized this the other day and said, “I am never going to feel well enough to do this.” And then I wrote it as the first sentence of this column. I am back to working out, for the…
“I don’t feel well.” I used to say this all the time. I said it before my last round of IV antibiotics and sinus surgery at the beginning of the year. I said it before being sheltered in the same dang place, thus having much less exposure to the…
If I were a doctor, I would say hello and ask a couple questions about the individual first. That way, they would feel like they’re a person, I’m a person, and we are two people who can talk about health. I would not act like the doctor I spoke to…
“Is this what I’m going to do forever?” I asked my dad. We were waiting outside a lab that hadn’t received the necessary fax to draw my blood, even though we had called and confirmed with my doctor’s office hours before. I had emailed my primary doctor earlier in the…
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