Living with cystic fibrosis amidst the coronavirus pandemic

Posted at 4:14 PM, Mar 25, 2020

FREDERICKSBURG, Va. – Bailey Anne Vincent dances with all of her senses but one. She says she’s profoundly deaf from all usable hearing.

"I am a choreographer, a professional dancer, a homeschooling mother, a writer, an advocate, and a director of my own professional dance company which is a body-positive dance company outside of D.C.,” Vincent said.

In life, she relies on reading lips and sign language, but when dancing, she’s able to feel the music and innately understand the rhythm.

“So I can be a bit of a control freak because I like to hit play on the music myself, because when I hit play, it’s like I start my internal metronome, and I start the clock in my head,” Vincent said.

She started losing her hearing as a child and realized why when she was diagnosed with a chronic illness.

“I have cystic fibrosis transmembrane related disorder which is a variant of cystic fibrosis, and for me it impacts all of my major organs so my sinuses are impacted, my lungs, I’ve had a copious amounts of surgeries on my stomach, and I have a whole bunch of robot parts so I call myself a bionic ballerina,” Vincent said.

From inhaling antibiotics to taking daily medications, Vincent faces many challenges with her health. So, when something like the coronavirus becomes a global concern, it means Vincent's life could be in danger.

“I am considered high risk amid the coronavirus outbreak,” Vincent said.

Vincent’s husband, John LaBarbera, says they always have to be cautious of germs and sickness around her, so at first, it didn’t seem like that big of deal. However, it was inevitable that the emotion of it all would eventually catch up.

“Bailey often says to me ‘your cold could be my pneumonia.' All the sudden today as we were driving to the studio, I just started feeling this tightness in my chest – which understandably is a concern so I was like ‘oh no’—but I could immediately tell that it was just that I had been suppressing the stress about it, the worry about her and about the illnesses,” LaBarbera said.

Vincent says cystic fibrosis patients are familiar with staying six feet apart from one another, but when the whole world needs to practice social distancing it can be a bit daunting.

“Because of my health, I’m used to having to wipe things down, and be aware of germs, and avoid other people who are sick, but this is just so scary because we don’t want to bring it to anyone else who is immune-compromised or to my parents or the elderly and so I think everyone feels so much more involved in keeping one another safe,” Vincent said.

It should be noted, we stayed multiple feet apart while recording this story, and sanitized all camera equipment for the safety of Vincent. And a studio that would normally be filled with dancers was reduced to Vincent and her family. Vincent says she’s not sure how she’ll handle this new reality.

“I’m honestly really disheartened and depressed because for me, dance is my outlet. It’s the thing that makes me not worry about the pain of my physicality, and not think about my health so much. So not being able to have that outlet, of course, is difficult when you’re someone with chronic pain and issues to not be able to be out in the world and distract yourself from your current circumstance,” Vincent said.

On top of that, Vincent is trying to keep her nonprofit dance company afloat.

However, LaBarbera says he and Vincent know they still have so much to be thankful for. Slowing down the pace of life is something they can appreciate amidst the chaos of these uncertain times.

“There are a lot of things that let us take that breath and focus in on what’s important – family and Bailey’s health,” LaBarbera said.

Vincent says we can find solace in the fact that we’re all in this together.

“In this weird way, I hope that by all of us having too be farther apart, it actually brings us closer together,” Vincent said.

And even though she’s not currently dancing alongside her friends, Vincent still has her family to keep her going.

“Watching my wife dance is a singular joy. She’s just… she’s beautiful,” LaBarbera said.