Rewriting a Chiari Story
No.
Not now.
Shit. Shit. Shiiit.
The lingering remnants of yet another virus couldn’t have picked a worst time to flare up—30 minutes into my first Zumba session.
I’m at the back of the group because I have no idea what I’m doing and I need to watch everyone shimmy and twist and shake those butts in front of me for a prayer of following along, so no one notices that I am about to tip backwards. I scrape every ounce of will from barren reserves to lean slightly forward to stay upright so I can collect my water and bag. My skull throbs. If I pass out people will think it’s from the heat, not a chiari malformation. I am hot, dripping with fresh summer sweat. I sucked at Zumba. Sucked. But I was also enjoying it.
Now I’m hurrying to the bathroom before I black out so I can sit, put my head down, and hope like hell this feeling passes.
One lousy cough. One fucking—
I sit on the toilet while my head screams in my ears, my soul. I hate this. I thought I was done with this. But I keep getting sick. Sick = cough = head pressure = PAIN = trying not to make a scene at Zumba (with more than my complete lack of skill) = hiding in a public bathroom and eventually watching the last half of Zumba from a bench because the music is good and the instructor was blowing my mind until the chiari literally blew my skull open.
What Am I Doing Here?
“…I stood there beyond embarrassed and heartbroken. I had been working so hard to solve my gut issues, and I’d started to think that my worst days were behind me. I thought wrong…”
In her book Radical Confidence, bona fide bad ass Lisa Bilyeu recounts a similar story about her own health struggles when a dormant stomach issue made a really “shitty” appearance at her anniversary dinner, and how defeated she felt when—despite years of lifestyle changes and big improvements in her condition—she was knocked on her ass (literally) by one really rotten day. I might as well have been in the bathroom stall next to her, clutching my head, furious that I still hadn’t totally fixed it. I keep saying I’m well, I’m healed. I’m not. I’m NOT if this keeps happening.
I’ve made such massive strides to live chiari-free, and I’ve been confident in my decision to pass on the decompression surgery—one of the only treatments offered to someone with this condition—that moments like this that bring me to my knees, that control what I can and cannot do, are so devastating I start to question myself all over again. I forget the past month with no symptoms and dwell on the ten minutes of excruciating pain that ran the show…again. On the flip side, when I feel good, I forget that an 18 mm descent of my brain has immense POWER and control when I’m down-and-out…and when I choose to let it.
That night at Zumba, I wanted to cry and throw in the sweat-soaked towel. I was pissed and defeated and felt utterly hopeless.
And then…then the pain subsided, and I reminded myself that I went way outside my comfort zone, drove twenty minutes to the class without diverting course to the nearest Taco Bell, and did thirty-five minutes of hard-ass Zumba. I had to stop early and deal with the pain, but that wasn’t the only thing that happened that night. I could dwell on the bad until I got lost in it, tumbling back down the dark pit of illness and despair, OR
Or I could let it go. If I was determined not to let the chiari malformation define me, or write the rules of my existence, then I couldn’t let the head pain be the most important thing about the experience.
A week later, I arrived for Zumba twenty minutes early and cranked out this post in a little purple notebook. Then I danced my butt off. And when I took a break, it wasn’t because I was in pain but because it was ninety-degrees outside, and I was hot. I was, for all intents and purposes, chiari free.