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11:15pm June 30, 2014
Anonymous asked: unless it's too personal of a question which i totally understand, what is catatonia like for you?

It’s like my body has its own rhythms.  Sometimes those rhythms are to be absolutely still, and I have to fight through them to move.  Sometimes those rhythms are to move in various complicated ways, and I have to almost find a way to dance through those movements and get in edgewise the movements I need to do.  Often, there’s also a thing where I have a lot of trouble crossing boundary lines.  Like I can lie in bed for hours needing badly to go to the bathroom, and even pee myself because I can’t cross the line of getting from bed to getting up, without help.  Or I’ll get stuck in other ways, in thoughts, in places, in doorways.  I have trouble initiating, but I also have trouble stopping things, and switching movements, and especially, especially combining things.  So I can have all the pieces of what I need to do, but I won’t be able to put them together.  In extreme situations, I can freeze up for hours, or end up running around the house as fast as possible bashing into things and jumping on the furniture until I literally drop from exhaustion or have an asthma attack, but with careful management of overload, those things happen less than they used to.  Sometimes I get so little control over my body that I need other people, or my cat, to physically prompt me so that I can find my body parts and move them in order to do things like type or get around the house or (when I used to eat) feed myself.  It’s a constantly shifting situation, nothing is the same day to day, moment to moment.

The really long freezes can get dangerous because if I don’t move at all, then my butt gets more of a risk of pressure sores, and it’s excruciatingly painful to sit in one position for hours on end without even the slightest shifting of movement.  Fortunately I don’t get as long freezes if I manage everything right and listen to the right music (country helps) and take medications (lorazepam helps) and stuff.

Here is something I wrote on September 6, 2006 that talks about one element of this:

I’ve been using a picture of a stork as one of my icons on LJ for awhile. The reason has nothing to do with babies (except perhaps, tangentially, those of us who have been stereotyped as black stork babies). I described my reasoning in what I wrote for AutCom, as part of an explanation of why flexibility is so important in services.

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

Storks suit me better than spoons, even colored ones, at any rate.

Notes:
  1. withasmoothroundstone posted this