Am I Repeating Myself, or Am I Just Broken Again?

by Bailey Anne Vincent | August 31, 2021

By the time you read this, I will be going into surgery.

I said that in my last column, which literally was titled “I’m Having a Scary Neck Surgery,” and I just had another one a month before this one, and one three months before that, and another six more before that, and on and on.

I know I might need my port-a-cath replaced in the near future (which is easy). And maybe a new solution for my colon warfare one day (which is less easy), and on and on. At this point, starting a column with “I will be going into surgery” sounds a little derivative and redundant. And other derivative words for redundant.

The thing that worries me most about what inevitably will be going down soon after you read this is the fact that I know something else is acting up, and this time, I didn’t expect it. In fact, it’s the last thing on earth I expected to be writing about right now. After two lumbar surgeries to fix the same disk within six months, I woke up last week to a new issue that feels rather old: My leg has gone numb again.

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Last time — both times — my toes stopped moving, and I had to have surgery to regain full function and to stop the nerve from being damaged forever. I recognize that writing about toes that don’t move and ankles that flop around sounds utterly ridiculous when so many have lost far more (including my beautiful cousin, whom I previously wrote about, and whom I think about every time I selfishly complain). But even so, as a professional dancer, my feet literally are my work.

$Cystic Fibrosis News Today \ A sunny day on the beach for Bailey and her 12-year-old daughter Follin.$

Bailey, right, and her daughter Follin, 12, during a recent beach outing. (Courtesy of Bailey Anne Vincent)

After meeting my husband nearly a decade ago, I remember telling him that, “I don’t mind that I have scars and robot parts on my upper body, as long as nothing ever happens to my legs.” I thought nothing would. Why would it? CF is about internal organs, right? But we forget about bone health and skeletal stability. We forget that it can impact everything.

“I don’t even know what to feel right now,” I told my partner after keeping it to myself for the first 24 hours, then realizing I should probably tell someone. “How have I gone through this much work to get my feet back only to have this happen again, days before cervical spine surgery?”

I emailed my surgeon, who is the type of George Clooney elegant one would hope their surgeon to be, and asked if this new numbness could be explained by the issue we are about to fix. (Please don’t be my lumbar spine, please don’t be my lumbar spine.) He said it cannot. Unfortunately, we have to look at my lower back again, and the clock is always ticking.

$Cystic Fibrosis News Today \ Bailey at the beach.$

“Scars, swimsuits, and sun.” (Courtesy of Bailey Anne Vincent)

I can’t help but feel like every time we are about to plug a hole that’s leaking, we find and must ignore another crack in the edifice. Why can’t we fix multiple things at once? Why is medicine so damn slow?

George Clooney, my surgeon, knows what is at stake here, as he was lovely enough to watch footage of my dance company performing at the Kennedy Center and show his office staff. “You are the reason I was able to perform on stage,” I told him. Months before, I couldn’t move my foot. Have I failed him somehow now?

I don’t have a moral to this column. It’s the same repeat plot you’ve read here before. I could have written something totally different to entice you, to keep you entertained and dazzled, but it would be a lie. Because the truth of the matter is that even as we go to fix the new new, the same old is creeping back again, and that’s what was on my mind. I couldn’t write something else, because the same derivative-redundant situation is the current plot.

Maybe by the time you read this, I’ll have CT scan results and new insight. Maybe it’ll work out better than the last time. Maybe it won’t even be what we think it is, and I’ll be able to move forward unscathed.

But the leaks keep coming. The need to put my chin up and fight for what I want to keep doing in this life continues yet again. And even when I hate repeating myself — history keeps repeating.

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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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About the Author

Bailey Anne Vincent Bailey is a scar positive, signing, Deaf storyteller and professional dancer, who believes etiquette, work ethic and role modeling matter as much to a role as just inhabiting a part. As a disabled choreographer, director, music supervisor, and actor, she has spent the last 8 years running a company called Company Dance Theatre on the east coast: the first body neutral, large scale company in the US. But she’s also been a journalist, columnist and novelist for almost three decades, in addition to the trials and tribulations of motherhood. 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.