Sunday, September 22, 2013

Round and Round We Go: Routine and Ritual, Remember and Re-enact...

Routine and Ritual, Remember and Re-enact,
On a child's carousel;
Up and down, round and round,
Familiar faces and places again and again:
In a blur of Einstein motion...
This is (in part) what my life is like.
Individuals with Autism and FAS, as well as many with ACC have a disconnect between volition, and action.  This often and also shows itself as one or an other form of Apraxia.  Apraxia is a disorder of motor planning, which is either acquired or developmental, but is not caused by uncoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series)

One of the aspects of living with such neurology can be a great sense of frustration, never feeling like we are able to accurately express and perform our needs, even while we do so, but inconsistently.  Studies show disorder in the area that is referred to as executive function.

Executive function is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes, such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions. The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is responsible for processes that are sometimes referred to as executive functions, executive skills, supervisory attentional system, or cognitive control. The prefrontal areas of the frontal lobe are necessary but not sufficient for carrying out these functions.

It might be helpful to understand working memory as the RAM on a computer.  The RAM in itself, is only a temporary processing function, taking information from the hard drive (long term memory) and swapping bits of this information back and form in complex combinations at the speed of light (practically speaking?)  Our working memory has/is "faulty RAM."  Often under an ideal condition it can work rather well, but when the system receives any demand that taxes it's speed the entire system can literally shut down.  

At other times, the "RAM" will in fact attempt to work, but will be swapping incorrect data, making correlations where none exist at all, and coming up with erroneous conclusions.

On a purely psychological and subjective level, this leads to incredible self doubt about pretty much everything.  Whether or not it is acknowledged consciously, we can grow to doubt our very sanity, integrity, and mentality.  

As I have educated myself on my condition, this in itself has been a form of great relief.  The very anxiety we would hold about all of this, can be a great cause of pain and dysfunction, yet when it is discovered and accepted, at least I can speak personally about this, there is a form of great relief.  I have and am learning to relax more, not doubt myself, but doubt my "processing", to use double/triple references and checks, comparing my perceptions to those around me who love and appreciate my difference.

Sometimes they will in fact point out that I am completely off the mark, not in judgement, but out of love, and that can, but doesn't always, help me resolve the reality of the task or incident at hand.  I am so very blessed to have this in my life now.

One of the way we ASDs, ACC folk deal with this is routine and ritual.  Externally to the untrained eye this can appear as OCD but (in my opinion) is only loosely related to that phenomenon (in the best of circumstances..)  You see, if I am not prompted, I will not remember to bathe, to brush, even to toilet and eat. This is a bit personal, but I am largely unaware of my bowel or bladder until and unless it has gotten to the point of actual pain and distress.

Sometimes if the event goes against my logic of routine I cannot understand it.  Growing up and baseball is an example.  I could not remember (process actually) which direction to run (while at the plate) because it is illogical to run counter clockwise (in my brain) and they are all running widdershins (counter-clockwise), and I could not get myself to do it, and I would just freeze. and not run.  NOT to mention team sports? omfg NO nonononononoNO, I can't read anybody, why would you even want me on your (sports/aggressive...etc...) sport team?

Lists don't really help, at least not without constant prompting from others.  I can look at my ADL whiteboard (which lists those things I need do on a daily basis) and convince myself I have done something I haven't, very easily.  Now I have an Aid who follows behind me, and she'll ask me "have you done thus and such?"  I might even tell her (fully believing) I have, when I have not, and she'll see that, and won't argue or judge, but say something like "no, look, you haven't yet!" , and actually stand there and make me perform the task, or imitate it for me to copy.  Only so long as the demon in my closet (inconsistency) arises and throws me off the go-round, and I have only my rites and routes to guide me as I hold on.

All of my life, my parents, my family, some "friends" judge me on what appears to them to be wild inconsistency.  My own father branded me, as my brother did his own son a "psychopathic liar" refusing, or to be fair simply not able to comprehend what was going on.  I have absolutely no doubt in my heart and mind my parents loved me, tried to help, but they also had their own issues (don't we all?  I'm not in any way singling them out.)

Most neuro-typical people look like this:

"I HATE broccoli" 

OK, so you say, no problem?  This means they will always hate broccoli. This is NOT the case with someone with Agenesis of the Corpus Callosum,  Many things individuals understand to be permanent character/personality traits in us vacillate, change and morph continuously.  It looks like this:

" I HATE broccoli, I have ALWAYS hated broccoli"...and a week later you see me chowing down on broccoli and think I'm an outrageous liar.  But the truth is, I don't even know right now who that person was  who hated it....It is simply not even there.   Right now I think it is the greatest thing since sliced bread.  It is as if our internal sense of self is malleable to the point that it confuses and terrifies those around us.  OK, this was a silly example.  To be be honest, this has been an excruciatingly painful part of my life until I  began to understand what I was all about.

One expression of my obsessions, and then I'll move on to an other equally expressive and articulate rendering of the same obsession.  The Emperor swaps a new set of clothes.  But he never changes.

Many of you that know me, know also of my love of spirituality and religion, philosophy and psychology.  Here it looks much the same, but with a twist.  God has given me the gift of holding on to the "Golden Thread" the Common Root that exists in the aspiration of mankind toward growth and change.  This may be true, but like any other ACC folk, I am at once both craving for, and extremely uncomfortable with black and white.  Truth can never be "black and white" to me this is simply not logical.

By the age of thirty I would study foreign language, read the Quran, the Bible,  the Buddhist Cannon, the Vedas, and many other world religions largely in their original forms and languages. 
I, like many of us found I could legitimately and honestly chameleon myself (not in a hiding way, but in a belonging way) and subsume doubt by doing so, embracing one faith, then an other, and an other, because I would get to the point where I would experience the limitation of that form or discipline.  

Furthermore, always my course of study was not dabbling, I became utterly absorbed into it and it into me and "could not imagine anything else."  It is a personal belief of mine that this very thing is at the core of much human suffering in the name of God.

Saint John Chrysostom one of the pillars of the Holy Orthodox Church (so called "oriental" Christianity) was known to have said "we know without any doubt the fullness of Grace in Christ exists in the Sacraments of the Holy Church, but let us not be amiss and believe to limit the almighty Grace and Power of the Holy Spirit to act, when and if He will without regard to the doctrines and ways of mankind."  I believe he was a truly holy man, and that he was exactly RIGHT (in this:) that True God/Truth, Love, Light, "God" cannot be so impotent that He/She is unable to speak to each and every living and non living being in the universe in a language that only that one can understand.  

I'm learning to trust that innate Love and Compassion I have always had within me, beyond any forms.  A dear one shared with my recently, the more existential and concrete our experience of the Divine in our lives, actually all of the forms that define that begin to dwindle, break down in it's Light.  This is my life's experience...Recently I am experience "grey" for the first time in my life...a "not knowing", a "resting" in Grace....and it comes with absolute peace and stillness, even if in my mind and world around me I'm going through hell, that "rest" is always in the Center.  I'm filled at once with the pain and the Grace of life, simultaneously and reveling in it.

A Love of my life, my God-sister Troya lay in the room next to me, soon transitioning to new Life and possibilities.  I lost my grandparents, and other relations and loved ones, was neither allowed to be present or mourn.  I have been terrified of my emotions all my life, because of executive function issues, they have always been either explosive or worked and completely subdued until I had a meltdown.

Yet now, in the manner I mention above, my heart is breaking, and there is so much pain of loss, incredible agony...and yet, the emotion I'm feeling is largely modulated, meaningful (I can understand both it's source, and have an internal dialog with it, allowing it to heal me instead of wound me)  This is largely a new and unfamiliar experience with which I have no past reference to go by.....

I am filled with gratitude for Life in all Its forms, for my chosen family who loves me unconditionally, and yes even my biological family who largely has rejected me.  Each and every one of us is travelling this Grande Path, there is none that does not suffer, nor love, nor grow, nor change in exactly the same way in the depth of the human heart.

My most 'umble thanks and gratitude,
~Joseph

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