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 miss someone. I don’t even know her … and yet I miss her. I miss the person I do not see on TV, in the movies, or portrayed in most media to date. She needs to be here. And I want to write her. The person I’m referencing is…
Today I had a meltdown. I don’t like to think of myself as someone who has “meltdowns,” but lately they are happening more and more. It started logically; I was feeling the familiar pains of pseudo-pancreatitis — the pale-poop, swollen-belly, mystery nuisance — which usually means I can’t eat.
At this time last week, I was crying. I was crying because I didn’t “want to let them down.” The potentially disappointed party in question was a new company within my professional dance company, aptly titled “Comebacks.” Initially, I wanted Comebacks to be the ultimate “comeback” for former…
Two of my friends are dead. And I’m scared. Recently, I lost two friends on the same day. One was in love with a dear friend of mine — he has a milder form of cystic fibrosis, and they successfully loved and lived for years. The other I texted nearly…
9 a.m. I should be starting my day with the smoothie bowls that are stocked in my freezer. You can add gluten-free granola and honey to the pre-blended nutrients, but granola doesn’t sit well with me. I ate a protein bar and a banana on the morning of my…
I’m sorry. I’m sorry for being sorry. Do you ever feel like all you do is apologize? It’s what I do best, and for that, I’m sorry. My friend Maria said something the other day that stopped me in my tracks: “Disabled and chronically ill people don’t need to…
Chronic illness can feel like a competition. It can become a game of “who has the most badges,” like “minimum pieces of flair” in the movie “Office Space.” Who has the most symptoms and diseases? Who will win? Sometimes, we even post our badges online like identity pieces to…
I might break up with my CF clinic. It’s not them, it’s me. They are doing a good job. My CF doctor is fine. My nurses, dietitian, and support staff are really cool. And everything is basically OK. They’re nice people. It’s fine. The problem is, I’m not sure what…
This column is about colons. Someone needs to be studying the prevalence of colorectal conundrums in people with CF and correlated diseases, especially those in their late 20s and early 30s. The number of messages I get from friends and strangers about colons is miles long (possible colon pun). They…
I’m going to say something many people won’t like: I struggle with the word “disability.” In the eyes of society, I am technically “disabled,” but that doesn’t stop me from struggling with the term. If it isn’t illness keeping me in and out of the hospital (consistency is not my…
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