3:26pm December 18, 2011

Across The Divide part four

[This is Part Four of Across The Divide, a long article I’m breaking up into sections so it’s more manageable.  Please read the parts in order so it will make sense. Here are the links to the other parts:  Part One, Part Two, Part Three, Part Four (you are here), Part Five, Part Six, Part Seven, Part Eight..]

The funny thing is people can never seem to tell when I’m truly lacking comprehension. They don’t see that when I put the work into responsiveness and communication, this makes the world shatter.  I struggle for fragments of language and respond largely to keywords using a good memory for word-patterns from books, the Internet, and previous conversations.  (People never want to know how many times I’ve had the exact same conversation before.  They want to believe their questions and responses are unique. They never are.)

When my comprehension is low and I don’t have the ability to be interactive with people and words, I interact with the world directly.  I swim in texture, music, and color.  I watch the sun light up the purple sheet over my window.  I dance with the sensory world whether my body is moving or not.

Other times my mind fights the chaos instead of surrendering gracefully.  The world swirls around me, incomprehensible and overloading.  I grasp my little toy car and the cold metal is like an anchor while the rest of the world dissolves into a nauseating liquid state.  Nothing makes sense except the metal and I hang on with all I’ve got.

Things can go away even more, too.  I can lose not only ideas and words but also surroundings and almost all experiences.  There must be something remaining or I would have no memory of it. But I’d be hard pressed to tell you what that something is.  There’s no common frame of reference unless you’ve been there.  

But I can tell you one thing.  How much or little I can move. How much or little I can think. How much or little I can perceive. These things don’t matter on one level.  There’s something essential about me that never goes away no matter what my level of awareness or ability.

I see that same essential part of people in people with more stable profound cognitive limitations (real or presumed) whether they’re from developmental disabilities or Alzheimer’s.  It’s never gone.  I never see empty shells because empty shells are the illusion of minds that see only what they expect to see instead of what’s there. What’s there is a person with the same beauty and depth as anyone else. I’m not just saying that. This is what I see.

This is why I don’t fear the dementia that years of severe head banging may hasten, if I live long enough to experience it.  I only fear that other people, unable to see I have a soul, will treat me as the unperson that I have to fight them seeing me as now.  Whether that means depriving me of stimulation, institutionalizing me, neglect, abuse, or death.  I fear those things more than even the most profound cognitive losses. (Although research of course indicates that once people with dementia lose speech, professionals automatically underestimate their comprehension and cognitive skills.)

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