Saturday, June 2, 2012

I Don't Want Your Pity Just Your Understanding Would Be Nice...

If you are my friend, let me be clear.  I have never wanted your pity, but I would prefer that you try to understand me.  My reasons for writing this blog are as clear to me today as when I posted the first entry.  Experiencing firsthand, how my disability has affected practically every aspect of my life, but never knowing exactly what it was that was wrong, through many doctors and years of partial or incorrect diagnoses; I want to educated the public about Agenesis Corpus Callosum.  

While I still have, as do we all, my daily struggles with life and living, my life just a scant 5 years ago, cannot even compute anymore.  I am really grateful to receive the quality medical care that has so adequately risen to the challenge of providing me with those things necessary, armed with this new information to really begin to enjoy my life, learn how to cope with and live with my differences, while at the same time realizing that within my own particular strange world of ACC there still is no limit on the soul.

While I must remain ever aware of the fact, I no longer need to focus my attention towards what I cannot do.  I'm all too dsmn intimate with the knowledge, believe me.  Today however I attempt to redirect my attention to what I can do, and what I do do.  Accepting limitation can certainly be limiting, but in other ways it can be profoundly liberating.

After all, pity denotes sympathy and empathy...and such is not possible unless we have walked in the shoes of our object of pity...not "oh you poor thing, such a sad shame you're not normal like the rest of pitiful..." I would rather think that unlike pity understood today to be a term of condescension it refers to state in which having had a similar if not identical experience you understand that the object of your pity might just as simply be hold ones self lower than another, long enough to contemplate what this other human being experiences and open up to the experience.  At the very least, confront your own unfounded suspicions with an actual unbiased communication with the object that you scorn.

If however you are one that goes through life and what they don't know they ask, the world becomes their oyster, whomever and whatever the come into contact with they learn to bridle their judgement with curiosity.  

I've had people assume that I was being, well, honestly all sort of things...stubborn, hateful, angry indignant, manipulative...and hosts of other things, because they believed that my words and my behaviors were somehow directed in this way towards them.  With ACC it seems just as difficult and confusing to understand what others are communicating sometimes, as it is to communicate to someone else and have them understand what it is I'm actually trying to say.

I can be rather eloquent, more than oft times wordy, in writing.  If I feel comfortable in a situation at a given time, I can rattle off with the mouth, but the words coming out aren't adequately expressing what I'm  really trying to say.  What I mean is left unfocused I talk around most anything, but have difficulty describing the thing directly.  I remember when I came back to SoCal and I'd been living with my friend for just a few weeks...I was physically very ill with Hepatitis C and felt I had to walk on eggshells even for myself, my higher judgement skills, comprehension and organization skills, if normally inadequate were entirely not there.  I also felt I could not ask for anything directly, and so if I wanted you to make a sandwich, I didn't even know how to ask you, so instead can only tell you how hungry I am...i.e., a very passive aggressive kind of communication.  Well, a few weeks into it, I remember saying something to her like " I DON'T LIKE THAT THERE", or some such thing, and she snorts and laughs out loud shouting "well Thank God! It's about F*ck*ng Time!"  I'm very slowly learning that it is ok, not only to ask for help in meeting one's needs, but that it is OK to need.  

Whereas others often, understandable have absolutely no clue as to my thoughts, words and behaviors.  She had the forethought and wisdom to stand back, look at everything I was, and take it all into herself and accept it, accept me for who I was.  The key, the key beyond my diagnoses, my medications, my therapies and coachings and internal tools and self understanding that I have in recent years gained pale in comparison to one human being who was curious.  She wanted to know who I am, not who she or anyone else wanted me to be.  The power of human unconditional love and acceptance can transform lives, or more to the point, empower individuals toward change.  I cannot speak for anyone else's experience, but this is true in my own.

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