Well, we sent yesterday’s version of this post out with a much more gruesome photo than necessary – and missing a few edits that make it a little clearer. My editorial assistant and I sometimes have differences of opinion about what I want as visual portrayals (I don’t care for things that disturb me to the point of turning away even it might make for more readers!). Believe me, he’s a good egg. So the image with this repost is perhaps not so graphic? And with a little more meat on its’ bones. Without further ado:
I can’t remember ever not being diagnosed with something – and now that I am fact among the “not diagnosable” it is as challenging as when I was in the other camp. I am, perhaps, finally, simply a local eccentric.
It is just that my early years were very…odd. We moved 12 times before I was two. My godmother notes dissociative behavior before I was three, which is about when my father died. I was on phenobarb for weeks, out of my body (and reporting what I saw when I awoke) when I was maybe four. My knees started to dislocate when I was five.
By then I was terrifying to everyone: they held their breath waiting for me to fall screaming to the ground with a grotesquely distorted leg (image search “dislocated knee” to see), or to bring news of something that had happened far away of which phone news had not reached us yet. Precognition and high levels of intuition weren’t very acceptable then and there.
About the seventh, maybe 8th grade – or maybe my first year of high school? – I did something that must have scared everyone really badly. Really, I have no idea what it was. Or whether it is a flashback, memory, or electrical impulses gone astray. I always thought it was walking to town and outing my family for something—and that may not have happened in that way. I may traveled out of body (I learned that on the phenobarb), or not at all.
Whatever happened, the upshot is we ended up at Foothills Mental Health Center in the basement of a big old church up the hill from the downtown theater, where this very young and serious man asked me many very stupid questions. I only remember watching, disembodied, as he said something to my mother something about “pray cocks” and she looked down at the floor. I wondered whose penises we should pray to.
He was talking about the only label they had in the early 70s for children who were dissociative: dementia praecox. It was the model they had, and they were proud of it.
I didn’t go back there. Let ‘em pray to their own penises. I liked flying disembodied since my body with all its dislocating joints was so unreliable, and I couldn’t help it if I saw things I wasn’t supposed to (that were in fact what was happening—that’s the hard part!).
I think if there is anything I wish I’d known back then, it would have been to realize how very committed people would be to keeping me as the “crazy one” – what a fight it would be to have my health and be allowed to own it.
I knew the stigma of growing up as physically disabled, left handed, lesbian (not “lesbyterian” as a neighbor said, like it was a denomination), liberal Episcopalian in snake handling country. I owned it. That was me. Then.
And what was the stigma of crazy compared to that? What I didn’t know is that “crazy” is a new kind of stigma in which you’re no longer you. Instead of “crazy” being something that’s tacked onto your list of eccentricities, it blots out everything else you are until that’s it: you’re just…crazy. In the South, if this is where you start, your best hope is to become the local eccentric as you mature.
It takes years to change. It takes years for others to catch up, and great courage for them to let normal be a little bigger than their postage-stamp size reality. Crazy (or the more high falutin’ term, “unstable”) is always the penalty flag tucked in their waistband, ready to drop at any time. Even if you walked on water without the rocks, crazy meant you had somehow cheated. Even if you did the best work anywhere, it dried up.
To some, being diagnosed can be somewhat comforting: it is as if the puzzle of the lock you are told you represent has been matched to a key. What if it’s the wrong lock? What if the lock they identify and the key they match it to is… wrong?
Changing the lock, adjusting the stigma, is costly life-long work. A lot of people don’t want to change it or the key. Living—and letting live—beyond diagnosis is part of the work of creating trauma-responsive communities.
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