Untethering Chiari
Don’t hate me for asking, but…what do you get out of being sick?
No one consciously likes being sick. No one longs for the skull-splitting pain that can accompany a Chiari malformation. No one relishes dizzy spells and nausea and eye sensitivity and poor coordination or the other twenty dozen symptoms that our doctors may or may not take seriously, that there may or may not be treatment for, and that may or may not rule our lives BUT with every illness there is always some kind of advantage.
At my worst, Chiari was the BEST at getting me out of things. Excruciating pain excused me from everything. Family gatherings, friend parties, work events…cleaning the house, taking care of myself, or doing anything other than watching TV and drinking wine. I didn’t have to do SHIT. Because I couldn’t. And the Chiari was permission to give no fucks what anyone else wanted or needed or how they felt about my withdrawal from life. It was the ultimate get-out-of-jail-free card.
I mean, I was miserable…but I was basking in that misery.
I was in so much pain I couldn’t think about how to live better. I couldn’t worry about such things as my weight or the future of my writing or how filthy my fucking floors were. I was barely living. And it was awful.
It was also a way out.
I was a sick person.
To my core, that was me: SICK. I didn’t realize how bad it was until my husband—who never gets a cold—complained of a virus and my internal dialogue went something like this: What? He thinks he’s sick? What a laugh! He’s not sick. NOBODY is sick like me.
I owned illness above all else. I hated it, but it was MINE. Every coughing fit, every spike of head pain, every wall I stumbled into, every night I cried myself to sleep. Being sick was who I became.
And I would never get well until I stopped being a sick person.
The Chiari had its sneaky tendrils snaked into every facet of my life, like we were woven together in a most elaborate tapestry of illness and pain. To begin healing, I had to untether from it. I had to separate myself from every Chiari strand until every fiber of my being was free.
If it sounds metaphorical, it’s not. It’s literal and simple (though seldom easy). Every time Chiari became a thought or an excuse, that was my cue to change the dialogue. For example, when I was contemplating changing jobs, I remembered my brief stint as a bartender in 2011 and immediately my brain said: I can’t do that anymore; what if I have a coughing fit behind the bar? Limiting beliefs running rampant in my brain needed to get shut down and rewritten into something more supportive, like: I would love to work with animals or in nature. That’s the kind of job I should be looking for!
In that kind of rewrite, I’m not denying that I might encounter pain or discomfort, but I’m choosing not to let pain or discomfort be the focus or run the show. Instead of looking at what I don’t want to experience, I’m putting my attention on the things that I do.
More than changing my thoughts, I had to stop using Chiari as an excuse to get out of living…and everything else…which meant showing up one minute at a time in all the places that I used to avoid, being present with all the people and situations the Chiari had shielded me from.
If I wanted to live without its pain, I also had to live without its protection.
Now, it’s true that there are plenty of legitimate physical limitations that accompany illnesses, Chiari included, but the problem comes when you talk yourself out of anything and everything because of them. I could get out of bed, I just chose not to. I could show up in life, I just chose not to. I could write a book or clean my house or have a kid…I just chose not to.
Or, rather, the Chiari chose for me.
Pandering to Chiari’s whims wasn’t limited to thoughts. It was in every decision I made, every choice to live small, every act to hide and shut down. It was in the purse that I carried (will it fit a water bottle to stave off a coughing fit?), the places that I went (can’t go there, that store is guaranteed to tickle my lungs), the way I spent my time (I can’t visit those friends…I’ll have too much fun and want to laugh and laughing hurts so fucking much), and plans for the future (how can I have children when I can’t even take care of myself?).
Untethering from Chiari took work. And it’s still ongoing. Most of the ways that I have used Chiari to limit myself have been eradicated. My life, as a result, looks vastly different than it did in 2016 at the height of the pain. Today I’m a stay at home mom with a son, I have energy, I take Zumba classes, I write every day, my fiction has been produced by podcasts, I spend time outdoors every day, I laugh (sometimes it still hurts), I go into stores (sometimes) without bottles of water, I don’t drink wine every night (I don’t need to), and I’m free from the anxiety and depression that was once as crippling as the head pain that I only seldom experience. I am living.
If there’s one strand that I haven’t untethered from yet, it’s the fear around getting sick. I am terrified of being around sick people. I can’t even blame COVID, though it certainly contributed to the anxiety. I don’t know if I’ll ever be comfortable with someone coughing in my vicinity, knowing how bad it will hurt my head if I catch whatever they’re hacking up, and I don’t know if it’s necessarily a bad thing to keep my distance when I know someone is sick (I mean, shouldn’t we be doing that anyway?) but I’m trying to be less afraid. Or, at least, I’m trying to be less of a jerk about it when that fear takes over and people don’t understand why their cold is literally my kryptonite.
What I don’t do is use Chiari as an excuse to get out of living. I show up every day in every way and life keeps getting better. Bigger. Chiari Free.
And one of the things that helps keep it that way is something called DECOMPRESSION THERAPY.