The Body Awake

Miraculously Recover or Die

Last week was the 22nd anniversary of my awareness of the politics of form, and that anniversary hasn’t been without ripples.

It was the anniversary of my initiation into chronic pain, autoimmune disarray, and what would become a 15-year obstacle course diagnosis of a rare genetic condition.

It was the wakeup call to feel the physical toll of cPTSD that began when I was a toddler.

On 29 March 2001, my partner and I were in a car crash at Little Buffalo Creek on our way to see U2 in Charlotte. Prior to that I had no idea how much pain a human-person could bear, more or less look fine, and mostly still show up for everyday life.

I have not been fine, since. As much as any of this, I’ve learned how much American settler culture doesn’t value the formed experience, despite that it’s our primary tool of agency while here.

Like I do, I began writing about the spiritual overlaps of chronic illness. It began as my first actual blog, The Body Awake, which became my graduate thesis for my Masters. The first line of it is:

‘Miraculously recover or die.’ That’s the extent of our cultural bandwidth for chronic illness.

I wrote that 22 years ago, and it’s every bit as true today. Curiously, our attitude toward animism and inter-responsiblity has about the same range.

Yes, we know there’s no such thing as invisible illness now. There’s that which we intentionally overlook in favor of productivity, the comfort of others, othering. Spoonies are an industry now. As long as we’re not well or dead, we’re a potential customer. We’re more likely to have Ehlers-Danlos Syndrome celebrities in our feeds and Celiac Disease awareness on the menu, but our cultural attitude toward chronic illness and dynamic disability is still denial to a long, slow, painful degree.

All considered, my biggest struggle with chronic illness is not to be bitter. At myself, for what I ate, what I didn’t eat, for overdoing, underdoing. At my past, my present, maybe-future. At the people who don’t understand. The ones who say they’re tired, too. The ones who suggest yoga, just walking, or This New Supplement. The ones who said I was too young, but now say it’s age-appropriate. The ones who said a little bit won’t hurt.

As then so now, I have things to do. Calling doesn’t wait for perfection. It doesn’t care about fitness. It just says, “Go!”

I have commitments to live up to within my own desires and relationships, and so have sat counsel with Suffering and Scar many times to learn how we accomplish them, as we are family now. My goals are a lot smaller, closer to home. My Allies and Ancestors have had to dial it in, Skittle-sized plans, but we’re getting there.

Over the years I’ve told thousands of people to be where they stand, to animism aloud. Sometimes I sit, whispering to the ecosystems that have stood in my danger, to the magick of what cannot be cured, the mystery that has propped me up. I ask how to give back with less to offer. And I spend a great deal of time balancing truly living myself without performing wellness any more than I have to.

elder well, die well, ancestor well

@kelleysoularts

#beyourcommunity

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