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4:55pm February 22, 2012

➸ a large, fruit-eating bat.: meh

megachiropteran:

i read a post about someone being upset that their friend is no longer the same person because they’ve experienced an injury that has changed their brain function and left them helpless in a hospital.

and while i’m sure the person meant it to be a very personal thing (and if you are reading this,…

Warning to whoever the OP is responding to:  You may not want to read this either, because it’s too intense a topic that I experience from the other side, for me to consider your feelings while writing this. 

I have almost PTSD-level reactions to any hint of anyone mourning who they think I used to be. Partly because of how fucked up it is, which is extremely. Partly from direct experience.  Partly because I’ve had stalkers – former bullies upset that I got away from them – publicly pose as friends mourning the unrecognizable person they say I’ve become and demanding answers to very personal questions (not actually accepting the real answers from me or anyone else).  While actually seeking to take actions in my life that would kill me and destroy as many current and future friendships as possible along the way.  These include a guy who publicly put on that act but privately stated that the real tragedy is that I became fat and ugly and unfuckable.  So that adds a real poisoned barb onto statements that are already profoundly disrespectful. 

Because… seriously. 

Yes, my movement disorder has progressed. That’s what progressive conditions do.   

Yes, I can’t talk anymore.  I don’t count it as a great loss considering how little of my speech was what I meant to say, and how painful speech was. 

Yes, I have brain damage.  That’s what happens when you are on neuroleptics for years and have a habit of whopping your head until you pass out or go blind. 

Yes, I now have a condition that involves enough muscle weakness and general fatigue that I live in bed. 

Yes, I’m now a cyborg who needs an electronic implant in order to take a piss. 

Yes, I’ve acquired an entire host of other health conditions. Some of which have seriously changed me, some of which are life threatening. 

Yes, I can no longer do just about anything without some sort of cue to start me off, whether from people or objects. 

Yes, I’m fat. That, by the way, is the result of a metabolism that allowed me to survive starvation, so I welcome it

Yes, I use a motorized wheelchair. That tilts back. 

Yes, I can’t actually wipe my ass worth crap. (Wait… I did not intend that pun.) Or bathe.  Hell, even bed baths wear me out so I have to do different parts on different days. 

Yes, I sometimes have to use a bipap to breathe while I’m awake. 

Yes, I have to conserve so much energy that any movement you see is either absolutely necessary or involuntary.

Yes, I need help throughout the day and can barely manage the one “productive” thing I do the rest of the day, which is bathroom runs. (And yes I have Depends because I often can’t get out of bed in time.):

Yes, my IQ is much, much lower. (And is probably now even lower than the last test.)

Yes, I’m in constant, severe pain. Enough to alter my personality in pretty serious ways. 

Yes, I look to a lot of people as if I’m not here in my brain at all.  And yes people have said my eyes are vacant my face is blank there’s nobody in there or whoever is in there has the mind of an infant and all that. To my face.

This does not mean I have died or disappeared.

This does not make me an unperson. 

This does not mean I belong in an institution of any kind, until I die of abuse or neglect and people think that’s the natural way of what happens to disabled people. 

This does not mean anyone should claim the right to mourn for me.  And anyone selfish enough to do so to any pronounced extent, I don’t want to know anyway.  Because usually it means that they’re a superficial asshole who never knew me in the first place and has a fantasy version of who I ought to be. 

And I’m still here. And I was never who most people imagined in the first place. 

I have such little respect for that position on my life because it rarely considers that I’m here at all. And that I’m the person most affected by any changes that took place. And that some of the changes weren’t really changes in ability, just changes in how well I masked my inability.  

And some of these changes have been really hard for me. But most of them haven’t been. There’s an adjustment period and then I’m okay. 

My fear is not what might happen to me. Not even if my movement disorder renders me unable to move and dementia from bashing my head on things catches up with me. My fear is how people will treat me. Whether anyone will still be there. Whether anyone will think I’m worth allowing to live on my own. Or allowing to live at all. 

I’m not just the person in the fancy obvious thinking areas of my brain. I’m also – like all people are – the person further back in the brain where all kinds of learning and stuff also takes place.  Just because awareness is different doesn’t mean there’s nobody there.  And I could lose everything and still be okay. 

Most people seem to be terrified at the sight of certain people. I’m terrified of the ones who are terrified. I know what their terror does to people with cognitive impairments like mine and also more profound ones. And I can’t stand (it’s already happening based on my appearance) being the object of such terror.  So much that I made an entire tumblr about that kind of thing. 

Geez this entire topic freaks me out in ways that most people will never understand until it’s too late.  It’s one of the few things about being disabled that truly scares the shit out of me.  I can handle me changing, I can’t handle people thinking I was there and now I’m gone.  None of the things I’ve lost or may lose, even the life-threatening stuff,  matters to me on the level that basic respect does.  And people think that’s an act, it’s not an act, I have little to no fear about disability, but anything that even hints at being treated like an unperson the rest of my life scares me shitless.