When I became more heavily involved with the medical system, an interesting shift of terminology occurred around the way my life worked. It was now divided into normal (something that was never even named), and “episodes”.
Episodes were varied. The word seemed to refer to:
- Periods when I moved very slowly or not at all.
- Loss of speech.
- Motor or vocal tics.
- Behavior that other people could not explain.
For instance, if I got overloaded during an appointment, and curled up and hummed, that was not overload, that was “an episode”. If I took a walk and seemed oblivious to things, that was not an autistic person taking a walk, it was “an episode”. If I freaked out and started screaming, that too was not overload, it was “an episode”. If I tried to run away from captivity, that was not a normal response to such a situation, it was “an episode”.
I’m not sure how to convey exactly how sick I got of hearing “Amanda had an episode today.” Or “Amanda had a [fill-in-the-blank] episode today.” It seemed like almost overnight my life had become a series of notes people were taking on my behavior, and the bar was always far too high, resulting in frequent meltdowns and shutdown, resulting again in this episode crap on the part of everyone who was dealing with me.
What I needed was not for people to endlessly discuss these things, and not to treat them as if they were “bad” in some way and needing to be eradicated at all costs, but to actually grasp them as something integrated into my life. Episode denotes something separate from ordinary life, and these things are part of my ordinary life, they’re seamlessly integrated into it, yet everyone wants to denote them as something else. Something different. Something separate from me and my life.
To have people taking notes on these things, recording them, putting me under a microscope, talking to each other about them, only involving me insofar as I would go along with what they wanted… this was not useful.
These days, I run around blogs and I see people using terms like episode, dysregulation, and other very clinical-sounding terms to describe and understand themselves or their children. And then I see things like Danny’s Episode with Abnormal Movements, and I can relate too much to Danny, both in what he is doing (that sort of thing happens to me regularly) and the way others are describing him (which enrages me).
I cannot, just cannot, imagine my parents running after me with a camera on a day like that. I have a lot of days like that. On a day like that I want to be helped to lie down — which will take effort — and then covered with heavy blankets if possible. I can run around so much that I start getting asthma attacks, otherwise, and then I can’t control movement enough to use an inhaler, so it’s serious. I don’t want the kind of saccharine “caring” I sometimes get on those days, but I also don’t want to be chased around with cameras.
I just keep wondering, for Danny, and for other people who are still being described in these ways that separate off these portions from our everyday lives and medicalize them, how they feel about being described this way, how it shapes their conception of themselves, because it certainly screwed with mine enough when I was a kid. There’s got to be other ways to handle things like this than to treat them in this medical, detached-from-the-person way.