Yes, I’m still alive: Returning to my column after a 3-year hiatus
A returning writer shares an update on her life with CF
My name is Bailey Anne Vincent, and I am still alive.
Hi. It’s me. I’m the problem. (Courtesy of John LaBarbera Photography)
Three years ago, I was a long-running columnist here at Cystic Fibrosis News Today, writing about what I like to call “anyone who isn’t genetically in the black or white.” (I have atypical cystic fibrosis, or CF.)
I inexplicably stopped writing without so much as a curtsy or bow — which, given that I’m also an on-again, off-again professional dancer, is rather incongruous — and accidentally discovered from the oddity of internet search engines that the phrase “Bailey Anne Vincent obituary” was at the top of the list beneath my name for a while. Thus, the “I am still alive” clarification. (Not that I volitionally search my name or anything. Cough, cough. Sorry. People with CF cough a lot.)
I continued to write about dance, motherhood, and illness after I paused my column. Unfortunately, that meant I just splattered the same Jackson Pollock-like vulnerability at the world, but with less respect and less of a cohesive and caring community.
At the time, I remember justifying my own internally ableist thoughts by saying things like, “I don’t want to be known only as a sick writer.” But that’s the thing about living with a lifelong ailment of any kind: Because it’s lifelong, your very existence begins and ends with that illness. There is no other way to live with it because you are it. It is of you.
If I extrapolate myself from my sickness completely, then I extrapolate myself from existence, too.
In other spaces (such as Instagram or my new ongoing memoir project on Substack), I can play with my pseudo-Plathian ways and write in passive-aggressive “vagueries” as much I please — never fully committing to saying what’s wrong with my somatic self at any given moment. But this is not the place for experimental essays and freckled paint on a canvas that no one understands. This is the place for terrifying, naked, known specifics.
Nothing is certain in life with CF
The partner who has to listen to the rants. (Courtesy of Bailey Anne Vincent)
“Doctors always have to say the somewhat optimistic sentiment, even if they don’t believe it,” I told my partner recently, as I explained how every single physician I know has a script they have to perform, though it’s not their fault. (We are all just actors here, rehearsing our lines.)
“They never explain the scan in full, or what a certain shadow means. They have to say, ‘But I really don’t think anything is all that wrong’ as they send you to a specialist because they think that something’s wrong.” And on I rant, reciting the exact monologue as if it’s the first “Hung be the heavens with black, yield day to night!” performed at the Rose Playhouse, knowing the audience could still throw rotten fruit and oyster shells my way anyway at the end.
But what that means for most patients with indeterminate illness is that we never feel completely confident in expressing anything with certainty, because nothing is ever certain.
And if we do express the thing that we think is 97% known to those around us, and it changes, we feel like the “little sick writer who cried oof.”
Unfortunately, a lot of well-meaning, healthy people don’t have experience in how inhumane healthcare can accidentally be in its very humanness. Every day is new for doctors and patients (and all people) — the first time we’ve ever been handed that particular script before being shoved out onstage.
It hasn’t been a pretty couple of years, but I’m back. (Photo by Bailey Anne Vincent)
I still think about how Tiny Dancer (a teenage dance student of mine who was far closer than those words imply) was originally told her cancer had a 97% cure rate. I wrote one of my last columns in 2021 about her. She passed away a little over a year ago.
Even though I knew to the very center of my feeding-tube-addled core that numbers are made by humans, and humans are made of cells, and cells are made to change, I clung to that number so deeply that I almost wanted to believe the doctors when they slowly went off book, and recited new lines about clinical trials and last-second chances, nearly up until the last few months before she died.
In re-Googling my name for the sake of this return column, I realized something that just might be my greatest achievement of all: Now, when you search my name, one of the first things to appear is her name, too.
We are not the expiration dates that pop up beneath our epithet when someone looks to find us. Instead, we are the people we’ve connected with, despite whatever often aims to separate us.
If we are all just actors who don’t know the script, then every day is a new chance to not let changing cells change us.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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