I Wish I Was Sheltered in Place with Anyone but Me

I Wish I Was Sheltered in Place with Anyone but Me
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I am gravely inflexible.

This might seem shocking to those who know me, since I write openly about being a professional dancer. A lot of my career depends on how willingly I stretch, and how openly I hide imperfections in plain sight.

I am stuck at home these days (like everyone else sheltering in place), though we are encouraged to use words like “safe at home” instead of “stuck at home” to make the process easier, more positive. But all this time alone has only made me focus on the negatives of me.

I have a laundry list of things wrong (including my indifference to doing laundry), and I don’t mean sickness. Sickness, in fact, is the least that’s wrong. I am rigid in the ability to compromise or change my mindset once it’s made. I am quick to quit and throw in the (likely unlaundered) towel upon resistance. And I struggle with obsessive compulsive complexes that are deeply ingrained and embarrassing. (To discuss them is to face them, and that isn’t something I want to do yet.)

But being inflexible is a job hazard, too. For as long as I can remember, I’ve been the dancer who isn’t naturally good at it, and conceals this lest she’s discovered. Being home these days has been particularly freeing because I can work on weaknesses as long as I want (a fastidiously obsessive strength, ironically), with no one being the wiser (namely, my ego, as she is best left in the dark whenever possible).

Scar tissue a plenty. (Photo by Bailey Anne Vincent)

It isn’t surgeries that made my skeleton weak and immobile — sometimes it’s me, too. The time it takes to get as far as my peers (normally thrice as long) is hard to stomach, although the surplus of scar tissue in my stomach hasn’t helped either. Mounting inflammation and tightness in my joints add to everything even more. My hands hurt so bad lately that it’s difficult to type. This column, in fact, took two days more than normally to produce because the shooting wrist sensation was insufferable.

“Why aren’t you texting back?” a friend asks (I normally have lightening-speed thumbs counter to none).

“Because everything I’d speech-to-text would be inappropriate,” I want to say, were I to use speech to text, “And my kids are sheltered in place, too.”

I can’t make phone calls (the whole Deaf thing), which leaves FaceTime and Skyping and Zooming and so on, and reading lips on poor WiFi connections is infuriating at best. Sometimes, leaving well enough alone often feels better, alone. So why can’t I leave my well-enough alone? I sit, unwilling to find an alternate way, because the way I want isn’t working, and … well, that’s just how I work.

Safe at home. (Courtesy of Bailey Anne Vincent)

Strangers assume the hardest thing about being sick is the sickness itself. In reality, the hardest part is being stuck with the reality of me. She is all I have in the hospital for long stretches, or alone overnight because my partner is with the kids. She is all I know when my hands won’t write or release or distract with another. She is the only person telling me to stop when muscles and joints can’t continue, and everything needs to give. She gives very little, even when asked otherwise.

I read a story the other day about an elderly man who had hip replacement surgery, and his leg could only extend 45 degrees overhead while lying prone at the time. The moment he was put under (though this is just hearsay), his leg stretched unpardonably more, because (as the surgeon apparently stated) most of stretching is “in the mind.”

My mind hasn’t made itself up yet. I know I’ve never been a flexible dancer, nor able to hold positions my peers can with ease. I know not thinking about all the reasons I shouldn’t be able to do something as helped me do them. But I still can’t do like I want, including getting out of my head when viewing myself.

(Courtesy of Bailey Anne Vincent)

I don’t think we can think our way out of being sick. If we could, I would have by now. But my mind has helped me bounce back from surgeries no one thought I could bounce quickly from, and I wonder why that is.

Pain is everywhere. It is in everything I do, even typing these words. I can’t control my illness any more than you can, but I can (at least I hope) stretch to find a new perspective whenever possible.

Can I think my way to a new me? Not really, no. I wish I could. But can I think about my body differently? I hope so.

Maybe I’m not just stuck with this body. Maybe it’s what’s keeping me safe.

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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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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.
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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.

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