Saturday, November 9, 2013

and we're off !

Troya Lynn Patch  | 1959 ~ 2013 
I'm as it were, entering the second half of life, I'm neither slowing down, nor am I speeding up; but I am coasting along, taking in the scenery whilst focused on my destination. 

Every day there is pain, even when I know this world is but a fleeting dream, that there is so much more of it unseen to the eyes...I miss the presence of my best friend, and yet strangely feel her more "present" than while she was bound to the Earth...

If I spend the second half of my life gaining even an iota of the grace, compassion, love and commitment, service and selflessness that Troya embodied, I will be a better man, and this will be a better world for all.

"Moving on" has always been a painful concept for me. I'm now 51, and can honestly say I've not know real security (food, shelter, warmth, friendship, medical care) until my later years.

In light of who I am, my disability and what I deal with on  a daily basis, I have to acknowledge this as one of the single most painful times in my life.  I understand though, that with pain come growth and change.

I currently have a good friend, who is actually staying with me, helping me sort out the house and do what needs to be done, but I find myself in a quandary.  Troya was very special, we shared so much (of our affect) as being the same that we connected on a deep level, that people could only hope for in their lives.  Since her passing, I am really feeling the pain of the loss of this.  With Cameron here, staying with me, she loves and respects me, is selfless, goes out of her way to hep others, is understanding...yet I see, that neuro-typical people, even when they "understand" what we are going through, don't really understand.

I suppose it is also unfair for me to expect them too.  I have always been charming, and I can always gain initial rapport upon meeting almost anyone, but after they have been around me a while (Cammy has been helping me here some weeks now), they begin to see what it is really like living with someone who isn't neuro-typical.  They will try to understand, but often become frustrated, hurt, angry.

I'm having difficulty with "I need to be alone, I need my space and lack of stimulus, at the same time, I acknowledge that I cannot make it alone. "

This is certainly true for everyone, including neuro-typicals, but only to a point.

Unlike folks that are distinctly ASD, but not ACC, those of us without a Corpus Callosum would like to be social, but we know, from experience, that it often does not end well, that we, or the other party will misunderstand in communication, feeling will be hurt...

I can't speak for other with my condition(s), but I know that because of this, I often avoid social contact, and when I do have it, I try to have it in a certain "context."  It can honestly be a lonely, (horribly lonely) experience.  Not that I don't have some "friends" but for the most part they are "friends at a distance."

While sometime I actually long for social connection, I have always been aware that I was different, processed things differently, "thought" differently, and that more often than not it lead to argument, or hurt feelings, people even being violent towards me, my own family rejecting me and estranging me.

This is different from mere "social awkwardness," which is real, exists, and is a separate issue altogether.  My traits are not "psychological" traits (purely, in today's understanding of that term), mine are, for the major part, "neurological" or "neuro-psychiatric" traits.  They aren't by choice, can't be "trained" out of me, etc...  This is not to say I have no recourse to a full life.  Learning how to live with who I am, and "get the best out of the machine" is by far the more productive way to live my life.

I continue to work on my book, "A Boy With a Whole in His Head ~ A day in the life of a man born without his corpus callosum" (C) JS Galbraith 2010 , as well as continue in the formation of my ACC Non-Profit, and several other projects...and as the internet acronym goes, lately I"m just smfh, thinking "Wow, I'm beginning to find my niche, and already I am making a difference in people's lives" in utter dumbfounded wonder.  I owe my thanks, love and gratitude to Troya;  she was both the candle who passed on her flame, and the catalyst for incredible change in both of our lives.  It is for this reason my book will be dedicated to her.

I imagine the pain of "loss" will remain for a long time, but I know I can never loose the unconditional love, compassion, wisdom, faith, joy, and the laughter; the patience and the firm resolve that she planted deep within me.  Already I see some sprouting,  and to my utter astonishment others even fully in bloom.










Ah Sunflower, weary of time,
Who countest the steps of the sun;
Seeking after that sweet golden clime
Where the traveller's journey is done;

Where the Youth pined away with desire,
And the pale virgin shrouded in snow,
Arise from their graves, and aspire
Where my Sunflower wishes to go! 

~ William Blake ~






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