Saturday, February 8, 2014

Complexity of Emotion and Social Interactions....Finding Balance...

First, to all my readers, I apologize for not having written all month.  Many of you are personally aware of the activities in my life right now, and aren't surprised, but others do not know.  My thanks to all who continue to call me there friend and reach out to me.

Reflecting (and frustrating) on how easy it is (or appears) for others to read the emotions, intentions and subtle clues in human communications.

There is this "land" where all of that occurs, yet Gandalf stands there (where my Corpus Callosum should have grown) and shouts YOU SHALL NOT PASS. Throw in high functioning autism and Oooooh Macarena...

I work hard to find a balance in life, that I never quite seem to apprehend on my own...

I write quite a bit about not being pigeon holed, labeled.  I speak about how for the most part labels have served me, rather than hold me back, however there is yet another side to this.  I have always had difficulty asking for help...scratch that...I have always had difficulty articulating exactly what I need, the "help that will help" me.

Growing up this was so very difficult.  Like most high functioning non-typicals of my age and generation from the outside looking in we appear "normal" often enough (at least this is what others say, personally I have no concept of what normal even really means, other than an arbitrary social designation.)  Both ACC and ASD are spectrum disorders though, and spectrum does not necessarily denote an A-Z, or 1-100 scale that an individual falls along a line upon.  Rather it looks more like a block of Swiss Cheese.  This is because, (to use the previous A-Z, 1-100 scale) it is not that "everything to the left is dysfunctional, and everything to the right functional." It is more like, say, I do good with A-F, but have G, H, I, missing, I got K, and L, have M missing, N through V works some of the time, but not all of it, and W, X, Y, and Z, I haven't a clue.

People judge us by there own subjective view of us, but never consider what it is like for us, never walked in our shoes.  I've said it before, and I'll say it again...if many of these naysayers spent one twenty-four hour day in my shoes, they would be huddled up in a corner, in terror and/or tears.  I don't say this to promote a woe is me attitude, I only want others to understand that the world looks mighty different through my neurology than it does yours. (And the truth is, this is true for everyone.)

The balance that I have had difficulty finding is between discovering and improving my spectacular skill sets, while at the same time, being able to admit those things I cannot, nor will ever be able to do without help from others.

Many of my close friends, and those who follow my blog, know of my best friend and Soul-Sister "T".  T died October 2013 after a long battle with end stage ovarian cancer.

People with Autism and people with ACC both often over think things.  We often imagine scenariosworry, worry, worry about it, while at the same time loosing touch with what must occur in the present to have life run more smoothly.  The truth is, that managing (or attempting to) the Trust has pushed me to the brink, to the edge.  The most amazing thing though, this wonderful woman, my sister T spent her last years encouraging, nourishing, and supporting tremendous growth and change in my life.  She alone "held the pregnant space", the nurturing environment in which I was completely allowed to be myself, discover, forgive, embrace and love myself.  Over the past 8 years, but particularly the last 6 I have gained more social and emotional skills than I have in my entire lifetime.  I owe this to my hard work, the dedication of doctors, OTs, therapists and more, but especially to T.
that have not yet taken place and we

In the words I used with my MD "If this had happened (T's passing) in my life, just 10 years ago, you would be peeling me off the streets of LA and hospitalizing me."  This has been a test that the Divine has given me, not for Her benefit (the Divine's) but for my own.  This entire time T has been whispering over my shoulder to stand up to  the person bent on  bullying me, reminding me of the "metal" I am made of that I made it through 18 months of my own chemo and immunotherapy, and lived.

So I'm always asking the question where do I draw the line?  There are those who would (who have) judged me with the same line of bullshit my parents did for years "you just aren't trying hard enough", and there are those that would even discourage me, telling me "you just aren't cut out for that, accept your differences."  There must be a balance in the elusive middle somewhere though.

It is easy for me to be so caught up in who and what I am not, and not capable of, that I forget I have skill sets that some deem incredible, that you likely will never have in your entire life.  This is changing too, but more slowly.  I'm in the process of writing a book about living with ACC/ASD and my journey along the way.  I am forming my own Mobile Notary Public business (which I will write more about in the very near future),  I am actively reaching out and helping in the lives of others with my peculiar neurology and their families.  Becoming a Notary Public is a huge accomplishment for me.  It may not appear so to others, they might role there eyes, but to that I say f*ck y**, no one has a right to judge me, and especially not by their own standards as a benchmark.

But, in order to do this, I must always keep in mind that I cannot meet all of my own needs without help, and this will likely be the case until I am old and draw my last breath.  I don't like to admit that, I still have the echo in my head of my father saying "why can't you just be normal, why can't you be like everybody else?"  (The answer is two-fold, there is no such thing as "normal", and no one is like anybody else.)

I want to thank everyone who has and continues to help me through this most difficult time in my life, especially my soul-sister T.  I want to thank those who believe(d) in me, even when I have difficulty believing in myself; for being a constant encouragement and support.

I had wanted to already be writing more on my blog since January, but my life has been so fully with things to do, and only now is slowing down to a dull roar where I think I can pick up where I left off.  Be expecting to hear more from me soon.

Every single day now, I get emails from people directed to my blog, who either have, or have a child born with AgCC and/or Autism.  They relate to me how important it is the work I am doing.  I am peculiar (in more than one way LOL) in that in the past 8 years or so, I have developed a very strong theory of mind.  TOM or Theory of Mind  is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own.  Deficits occur in people with ASD, AgCC, Schizophrenia, Attention Deficit Hyperactivity Disorder,  as well as neuro-toxicity due to alcohol abuse. Though there are philosophical approaches to issues raised in discussions such as this, the theory of mind as such is distinct from the philosophy of mind.  

Temple Grandin
  In short, I am able to help parents of children born like myself understand what my own parents could not (for lack of education and information.)  I can help them peek into the AgCC brain, much the same way as  Temple Grandin helps others peek into the autistic brain. While I do not agree with everything she says or does, the fact remains she has put a face and name to autism.  

Albeit, AgCC is also a spectrum "disorder" and even though their child may turn out to be very different than I, they can still get a round about approximation of what it must be like to be their child.

My parents did not have this, and I will never be able to fix that in my own life, however, knowing that I am making this difference in others' lives gives me a joy and peace I cannot even describe.

To all who follow my blog, I am grateful as we are learning from each other.


1 comment:

  1. Beautiful and enlightening :). Love and miss you!