Worrying is one of my most exceptional talents, as illustrated last week when preparing to travel to New York City.
I strongly connect with the phrase “dress rehearsing tragedy.” If life starts to stabilize, I worry about the other shoe readying to drop.
Nearly three months before last week’s trip to New York, the actual “worst” happened. After flying into the same city and rehearsing with my (at that time) brand new dance colleague, a health crisis struck me. After passing out cold at a restaurant, I could barely move for days. We later learned my liver labs had spiked and my pancreas likely flared, which eventually led to a hospitalization.
While preparing to perform our now-perfected pas de deux, I recalled that nightmare and fear paralyzed me.
“My worst-case scenario happened last time I was here,” I explained to my colleague, who I now call my dance husband.
“But you would never have the partnership we have now if that hadn’t happened,” he replied.
That is true. Weeks after the crisis, my dance husband and I traveled to Seattle as a team. We would never have gotten so close if we hadn’t experienced unexpected pain in New York when we barely knew each other.
An adage I often share with my dancers is, “Bad dress rehearsal, good show!” Even if it’s superstitious quackery, a terrible dress frequently implies a wonderful performance. What would happen if we applied that concept to health?
Perhaps if I let myself feel my fear — both before and after traumatic physical proceedings — I’d stop showing up late to my own psyche. Avoiding fear doesn’t give more control as a sometimes-sick person, rather, it further disconnects me.
Lately, I’ve been deeply disconnected. I’ve felt the type of sad that hopes my girls will “hurry up and go to bed” so I don’t have to hide my emotions anymore. It’s the type of sad that resents my loved ones because I don’t want to smile for them (though I will).
The catalyst for this is fairly simple: I have little control over my own body. Whether evident through the decisions of politicians I’ve never met before, a stranger in New York screaming instructions on the street for what I should be doing with my mouth as a woman (it wasn’t “eloquently express my sadness through meticulously honed rhetoric”), or most of all, our healthcare system.
Due to medical bankruptcy described in my previous column, I now have to start from scratch in building my medical team.
“The problem isn’t you,” my dance partner said. “The problem is the system.”
He’s right, but sometimes it’s also me. I can be apathetic with appointments if I’m not in a crisis. Where I used to wave the complaint flag too often at first decline, I now wave it too little, wanting to live between major maladies. Some pain feels worth it. Creating boundaries seems wise.
My body is mine, right? Yet instead of disconnecting from the negative sides of health, sometimes I instead disconnect from the positives. Being “broken up with” by doctors over money hurts, but realizing how little control I actually have hurts most of all.
“This is an opportunity to start fresh,” my dance husband said, “to pick people whose lips you can read easily (I’m Deaf) or who aren’t hours away.”
It’s a chance to stop dress rehearsing and start building a dream cast for the future. Even so, it’s hard to find the silver lining in sadness.
Most days, I wish I could set boundaries with the world; dictate when they can touch and treat and testify to my body, and when they can’t. I wish that what I do with my mouth (including smile) was my own choice, and not something demanded by another. And I wish, most of all, that my body was sacredly mine.
For now, maybe it’s the sadness that is sacred? Maybe all we can do is feel it or write it down even when it’s fearful to feel. And then, when it’s our choice and the time is right, get back to what we really want to do.
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.
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