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.Worrying is one of my most exceptional talents, as illustrated last week when preparing to travel to New York City. I strongly connect with the phrase “dress rehearsing tragedy.” If life starts to stabilize, I worry about the other shoe readying to drop.
Today I couldn’t make an appointment with my primary care physician. Although I still feel new to the area where we live and am not exceptionally close with my primary care office, yet my primary care physician is essential. As someone with a…
I have a theory: All truly sick people have mental illness. I’m not saying that people who have physical diseases are crazy. (Although some of us may or may not be convinced that Jack Black is the sexiest man alive, but I’m not naming names.) Yet, I do believe…
The worst thing about being a writer is being unable to escape old drafts of yourself. Would you believe that the photos you see here were taken on the same day? (See also the Facetune skills, circa 2015, that have since been forgotten.) (Courtesy of Bailey…
I am not a political writer. I am a political person, don’t get me wrong. I have no shame in calling myself “political” because I think that anyone with the luxury of saying they’re not interested is someone with inherent privilege. The ability to remain apathetic…
I am becoming a supermodel. OK, not really. But, perhaps I can pretend? I’m traveling to New York with my daughter to take part in a beauty campaign for a company I’m passionate about. The reason I love them is that they…
I wish my life was a Cameron Crowe movie. If it were, then after I left my doctor’s appointment this morning, things would have gone differently. If my life was a movie, my nurse would have been a kindly but…
I am a liar. OK, not in a bad way. As an actual profession, I am a liar. As a professional dancer, it’s my job to “lie” to the audience in show after show by transforming into an entirely different character.
“You should write about how it’s impossible to have a life and be sick at the same time.” This is what my partner said this morning, after asking him what the heck my column should be about this week. Honestly, as a mother of two girls, ages…
“What is the hardest part about living with lung disease?” A curious friend recently asked me this question, and my answer could likely far exceed the maximum word count for this column. Is it the chest pain and wheezing, which often feels like a panic attack that never ends? The…
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