Get regular updates to your inbox.
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 have thin privilege. I’ve said this before and I’ll say it again: This is significant because only those who benefit from the system can help break the system — and it needs to be broken. “I saw a comment on Instagram where someone pointed out how sexist the concept…
What you read here is a lie. I don’t always know what life looks like from the outside in, but I know that most of us can never tell what’s really going on in someone else’s. Even when we share a lot online. Even when we write a…
I didn’t write my column last week. It’s the first time I’ve missed a column in months. If I have a surgery or a conflict, I write ahead of time, because one of the best (and most challenging) things about working for a company run by sick people is…
I wish someone actually talked about marriage. And not just marriage to a sick person, though I am one. And not just how to fix a marriage. I don’t want someone to offer advice on what I’m doing wrong (plenty). I just want someone to talk about it honestly. I’ve…
Here’s what you need to know about disabled people. First, don’t call them “disabled people” unless they want to be called disabled people. Or people with disabilities. Or neither. I don’t call myself a disabled person, personally. It’s not because I don’t support the community or consider myself an…
“My second nephew was just born,” my boss texted me the other day. “If you have any parenting advice, I’ll pass it along.” I sat down to write him a couple of sentences regarding his brother’s first baby. Instead, I wrote this column. I became a mother unexpectedly as a…
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…
Visit the Cystic Fibrosis News Today forums to connect with others in the CF community.
Get regular updates to your inbox.