Sunday, August 11, 2013

Independent or Interdependent?

Always something new to learn, become aware of. Always somewhere to nudge, stretch, stress, and strengthen or transform. Today is no exception! One of the ways I like to describe what it is like for me with ACC is socio-emotional dyslexia.

It really is an apt description, when you consider that the most common "occurrence" my life is inconsistency. In my case, my "person" (felt sense of being, inner-sense of self) is something far more fluid than neuro-typical folk.

We not only deal with memory and communications, social and emotional glitches, most people will deal with one or more of these, but over a lifetime rather than as a daily occurrence.

For example, I will hold strong convictions on one or another issue.  Then I will wake up one morning and feel strongly convicted of perhaps an opposite or alternative view on the same issue.  As far as I'm concerned though, I haven't "switched" from one to the other.

Lord Brahma the Creator
Four Faces
That other day, that other person, his convictions and his reasoning behind them, vanish, and in there place an other.

This is not through any mediate process, like careful consideration and planning, or even obsession.  The more unusual thing is that who " I am " now thinking about this, cannot even comprehend that other position/thought/ way of looking at things.

I know (because I have spoken to people about it all my life) that there are those that say "you are just not trying hard enough" when the opposite is true, I spent much of my life completely obsessed with what the hell makes me tick, so to speak. For me, it is much the opposite.  I can experience it more like being handcuffed to one of those mega roller coasters and be forced to ride it again and again and again, with absolutely no choice in the matter.   I think on this note I hold to the words of Swami Satyananda Saraswati when I was sharing my ACC with him, he said "isn't it a good thing that you are not your mind?"  I am in no way "defined" by my having ACC.

You find many ACC people along a spectrum in much the same way you do children and adults with ASD. Also, understand what spectrum is referring to.  It is not generally referring to anything remotely similar to the marks on a 12" ruler, or from "A to Z" etc...  Spectrum is the the rainbow, it consists of many millions of gradations of light and color.   

For example I have a very very high verbal IQ, I can write (obviously), and I can speak on a given topic (monologue), but even though I can present myself comfortably in social situations, I find I am very often misunderstanding someone's intent.  Just this week my Case Manager said to me quite clearly "I think you are misunderstanding what I told you."  She actually picked up on my cognitive mistake and while I was thinking she was quashing something, she was actually telling me how she was going to help me with it.  This is not at all uncommon for me.

So when we refer to a spectrum, I think of it more like Swiss cheese (I used to say I had Swiss cheese memory), because I can be high functioning in one area, but low or non-existent functioning in an area "right next to it" on the spectrum.  For example, I use words well, but fail when engaging in extensive dialogue of any kind.  I can charm a person, gain rapport, but not know what the hell to do once I have that rapport.

I can wash dishes, clean house, but not consistently, literally in  the middle of a task, I will think of something and just walk away into an entirely different thought pattern/thing to do and the old one literally just vanishes, I don't choose to ignore it or forget it, it is simply not there for me anymore...(but may pop up hours later in the middle of an other task, doing the same thing, causing the same "interruption" that occured earlier when I had "lost" it.

While I cannot speak for anyone else with my congenital defect, I know that I have had a constant struggle with things like my own identity, and independence.   I  do not want  to need help, just getting through the "average person's things" on a daily basis.  Sometimes I let myself feel less a human being because I am (in truth) so utterly dependent on kindness and concern of others for my well being.  Left to my own devices, without any external prompting at all, I can become much like that steel ball in the arcade games being thrown all over the place, but never getting anywhere, locked in a perpetual bumper car cluster fvck....I just baiscally wander in my imagination and tie that to whatever is going on around me, and, get quite lost.

Having someone around me all the time serves as an anchor to the here and now, to my bodies needs, first of all, then my mental and emotional, social, cognitive and communicative needs.  I often try to explain what it is like for me this way.

I can do most of the same tasks as any other person, however, (and the latest science is bearing this out, at least with ASD brains) the studies are showing that non-neurotypical folks like us use  far more "processing power" in a 24 hour day, than a neuro-typical will in a week.  I'm quite capable of some amazing feats of art, beauty, language, image, creativity, however this remains dormant in me, largely because I have used so much "processing power" just trying to manage my ADLs consistently...nothing left to do anything else with.... :(

But change is a comin'....

Working with my medical doctors at Kaiser and my Case manager there they have helped me get access to IHS or in home services.  This is a game changer  for me.  I'm at once excited, but at the same time ambivalent.  I say that I have cut the apron strings in my heart and mind, but I fear it is not so.

I find so much that I am still slave to the expectations of my biological family and of "society."  I don't wish to be judged or seen as a burden. In fact I am not to be judged nor am I a burden to anyone.  Because I have access to this help, someone to come in, and help me remain organized house hygienic and clean (me too, I do have to be reminded sometimes) help me navigate appointments.   It doesn't always happen, but often the stress of some interactions can trigger me to melt down, pretty much anywhere at any time.  I have never, nor would/could hurt someone, but I have broken a fair share of dishes, doors, walls, windows, etc...I find person on person violence abhorrent in the deepest sense.

I'm a 51 year old man, so in the eyes of the world, a melt-down can appear rather ugly...and to be fair, they likely do not know what they are observing, how could they?  I do call for compassion and acceptance, not of me in particular, but of all people and differences.  I do call for a world where on a rainy night, George Zimmerman would pull over, and offer a young black man with a hoodie a ride home.

There is far to much ugliness right smack dab up against the beauty of this world.  I understand (in some sense) the dilemma of the young black man in America today.  How is that you ask?  By being profiled, and abused by "officers of the 'law' " sometimes beaten, and far too often taken away by police brutality.  I fear this myself.

I fear being misunderstood and injured, beaten or worse.  This is for good reason, I have been beaten by
police before and literally dumped off the side of the road, while in a melt-down, granted this was over 20 years ago, but it still happens to others with DDs all the time.

So, I had a lifelong struggle between my own independence, and the apron strings in my mind, leading back to the expectations of biological family and society.

Yesterday was the first day, and my new IHS worker a lovely older lady who raised 7 children (she lost one of them) who has being doing in home services for many years, came to my rescue.  I have had all kind of apprehensions about letting someone into my home, etc, and even just the social aspect of it, do they understand my disability, etc.  But, in this case, my fears were unwarranted.  She helped me accomplish more in three hours than I  could do in a week, and with far more attention to detail than I am consistently capable of under the best of conditions.

However everything has a "payoff" right?  So I continue to struggle with this independence question, because it just seems so root, so primal, so to the point, Yet I continue on some level to struggle with it.  If I admit to my dependence in some or another area of my life, it frees me up to see where I am independent.  Furthermore it speaks of the interdependence of all things; something I not only believe in, but experience  directly on a very deeply.  Taking it a step further, there are those in this life, I myself am meant to reach out to, to help, where they themselves find lack.  So, there is a balance in there somewhere, I've yet to fully experience it.

By allowing others to help me in the areas in which I have most need, and can't function like neuro-typicals, my productivity, creativity, focus, mental elasticity all have a chance to flow, not bogged down trying to resurrect a dead dead, it be gone, it ain't comin' back...move on...

As I observe the world we are bent on classifying our experiences into black and white.  Yet not only do I think "black and white" an illusion, I see my life and experiences along the spectrum of a rainbow.   Each person born is part of a wide (the widest) array of color and shape and form and attitude and quality, and skill, and weaknesses.

Not only that, but all the many sparks of color in the rainbow ebb and flow effortlessly, merging, touching blending, supporting, the entire array that is really an expression of Life in its most primal form. All of this in an interdependent web, ultimately my actions affection not only those I touch in life but the entire world, as well as myself.  The same, I believe is true of all living level of degrees.

This is all the more apparent when we have begun to examine the data of countless satellites studying this Earth, Her systems, the many ways these systems all work together for the common well being of the planet, and how fragile and interdependent they are.

I think it is to the well-being of all involved that we continue to globally wake up to this reality, before mankind self-implodes... anyhow...

I feel a certain kind of "humility" (I do not really know the word I'm looking for) in that I have such needs as I do to help function "in the real world."  I don't think I'm comfortable with it, I feel myself squirming back and forth, even while this is exactly what my doctors and caseworkers are there to determine and help with and I'm looking forwards.  So much to do !

Imagine that we could all see one family.
This really is who we are
It's time we start acting it.



  1. This comment has been removed by a blog administrator.

  2. Thank you for posting,it helps me to read this as my son (1 yr old) has agenisis of his corpus callosum. I have been reading your blog and will continue to!

  3. Thanks Mary, to be certain everyone "shows up" differently with ACC, but if I can even give you a glimpse into how I see the world as one possibility, I feel I've done "my job" <3