31 Days of CF: Creating a Lifetime Bond with My Dance Instructor

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by BNS Staff |

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31 Days of CF

Photo courtesy of Samantha Barrett

Day 29 of 31

This is Samantha Barrett’s story:

I didn’t know anything about cystic fibrosis until I met Bailey. One of the best decisions I’ve ever made was auditioning for her dance company, Company 360. Over the past five years, we’ve created a bond that will undoubtedly last beyond this lifetime.

Bailey’s CF is rarely on display at the studio. It’s easy for her company members to separate “Bailey the dancer” from “Bailey the CF patient.” On Instagram, she shares videos of herself nebbing before rehearsals or taking medications through one of her ports. But the second her students walk in the door, you’d never realize she spent the night doubled over because of her gastrointestinal issues or hacking up a lung. For a while, it felt like knowing two people: one that could dance with me in the studio forever, and one that was in and out of the hospital, constantly fighting for her life.

Bailey often worries she’s becoming a “flake,” as if canceling a dance class due to a slipped disk is the same as blowing off work to hang out with friends. I don’t ever blame her for wanting to hide her illness or injuries because of misconceptions of what CF patients are capable of. I just wish she didn’t have to.

I wish she could take the day off from teaching when she’s feeling miserable without worrying about losing her job or respect from her employers. I wish we all had a little more empathy towards people living with chronic illness. 

Nothing’s made me wish for more empathy than witnessing the lack of it throughout the pandemic. Even while falsely claiming “COVID only affects the immunocompromised,” did our maskless friends forget who Bailey was? Or did they expect her to put her entire life on hold while they carried on with their own? It’s unfair to expect the CF community always to advocate for themselves and to put the responsibility of not getting sick entirely on them. 

Some don’t seem to care about the Bailey who posts selfies in the hospital as much as the one who dances on stage — maybe it’s because they’ve never before met that often-hospitalized Bailey. If they did, they’d realize she’s very much the same person they know and love, and whose life deserves to be protected.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or go here to see the full series. 


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