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 staring at a blank page trying to figure out what to write, and all I want to say is: “I’m so stressed.” I want to tell you about all the crazy pressures and stressors I’m under because it’s all I can think about. How can I write anything…
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…
“I am so happy right now,” I say to my partner as we set off on a drive on an ordinary Sunday. I haven’t said this much in the last year, although I’ve tried. “This moment is brought to you by No Pain,” I joke in that commercial voice we…
It’s 10:25 a.m. and all I’ve had is coffee. Last week, I wrote about my struggles with cystic fibrosis-related digestive damage and my increasingly fragile colon (which is not a colon anymore, but a small intestine and an inch of rectum pretending to be a colon), and I keep…
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…
I am going to write something no one wants to hear: Honesty is best when it’s pretty. Sometimes I am that person. I can smile through the suffering. I can point my toes while pieces are ignored. I can pretend that the realities of fighting for this life aren’t less…
I am in a bathroom feeling sick, writing about being sick, not wanting to be sick. I don’t want this to be my life or what I’m writing about. I get sick of saying it. You must get sick of reading it, or associating me with it, or scrolling…
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…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.