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 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…
To the doctors who didn’t listen to me: You were wrong. I remember the time I arrived in the ER six years ago, a place I mostly refuse to go, and you said, “Go home. You have vertigo.” You were a female, which I thought would work in my favor.
I am having trouble sleeping. Everywhere we look, it feels like the world is on fire (both figuratively and literally). And if it’s not in flames due to human negligence or greed, it’s certainly engulfed in political firefights. And the worst kind of political opinion is political opinion that isn’t…
If I die, will it make you better? This is the storyline that appears in almost every movie ever made about sickness. We know and love the tragic trope well, but how well we handle unwellness is most often captured by the Sick Savior Complex. No star-crossed sickness saga is…
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