Tuesday, January 22, 2013

The Guru's Grace transmutes our lead into precious metal,
in the fire of the human heart.

The heart's long bowed and sleeping head,
Turns up it's glance to the One that made him/her,
Much like the flowering and blossoming of the bud in the Spring...
Turning it's face to the Sun.

Guru's Word, Guru's Name, Guru's formless Form,
Seated within the heart,
Adoring the formless Sovereign "above".
To be the slave of the servants of this one,
Craving the very dust of their feet...
Thoroughly dyed in the madder of the Naam,
The Name of the Sovereign

Baba Nanak Dev Ji, say it the best:

Working over the forge of self-control,
The gold-smith of patience pounds the hammer of
Wisdom upon the anvil of deep understanding.
With the bellows of awe and reverence,
He fans the flames of his body's inner heat.
In the crucible of love, he melts the golden nectar
And mints the True Coin of the Word.
This is the labor of those who've been blessed.
O Nanak! The Giver of blessings
Has made them truly happy!
Siri Guru Nanak Dev Ji 

Sunday, January 13, 2013

Angst...and what to do with it

For so much of my life, I believed myself dis-empowered,  so I was..;
A conflagration of betrayal, fear, anger, obsession and angst, 
turned within, my own self the victim.

Today, however, I see the world in an entirely different way.  No longer feeling the need to live as others say I should, and to not be " ¡that way ! " (they are describing me and Agenesis of the Corpus Callosum whether or not they realize it.)  Leaving behind all those things that are not part of what make me up, I can focus on my gifts and abilities.

Furthermore, I have no quarrel with anger, anger is just emotion, and emotion in energy in motion.  It isn't a question of fearing anger (which I spent a life long preoccupation with), it is a question of using it, or utilizing it in a productive manner.  Learning to focus this angst, is a hard won skill, that while not entirely consistent, is above and beyond anything I believed capable for decades.  

Last month, with over a year of working on early childhood trauma (PTSD) with someone who I trusted; I had a life changing breakthrough.  It is as if " fear has lost it's bite "  for me, and much of my conscious attention spent on on obsessive hyper-vigilance for my safety, that took up my brains working memory (which I have issues with as part of ACC) was freed up.  I still have a bodily reaction to certain triggers, but I am actually using these events to change the "feeling" itself.  It is as if I can go "backwards" though the fear, and behind this fear I find a feeling of loss of control...but I no longer experience this loss of control, and if I do, for only a short moment.

Then, I have to inquire what is it that I am not in control of?  What is my objective and what steps can I do to change that? etc...

In the big picture, my reaching out working on a non profit for ACC that you will hear more about over the next year, my reaching out to my ACC peers, parents of children with ACC...will never rewrite my history with my ACC, but I can help make the future a better and more brighter place than it is today for people like myself.

We often accomplish little when we crave too many accomplishments.

Another part of working with this emotion, that the new "energy in motion" unless clearly defined is at best useful if not harmful, at least it won't be what we desired it to be.   

Therefor it seems to me that much in the same way that my angst and rage is rooted in the sense of loss of control, it is this very sense of control that I wish to help others discover within themselves by educating them about living with Agenesis Corpus Callosum.  I am no scientist, but I can certainly share what it is like for this unique individual with ACC, and perhaps you can extrapolate from that.

We are, each and every one of us, here, to make a difference!  Could be in big ways; but it is usually in small ways, ways that fit our unique selves and situation, but we always make a difference.   Even if you, the person with ACC or their parent or loved one, make a difference, in the life of just one person, you have begun to change the world.

<3







Friday, January 11, 2013

Yours, Mine, and God's Business...

In Guru Nanak's ideal there is the concept of God's Hukam.  The world translates as God's "command", but really it encompasses a concept far deeper than noticed at first glance.

Guru teaches that God is the only "doer..."  While we have our free will, relative to our life and society, even that, in the very personal perception of it, is a shadow of the Great Will that is behind and part of everything in creation.  In one sense our surrendering to it (if that were even really possible, it "is" regardless), we find peace beyond understanding.

You might wonder, how am I going to tie this into an ACC blog, well, lemme tell ya'...

The title of this post is "Yours, Mine and God's Business" and is taken from the Work as brought forth by Byron Katie.  Put simply, there is "your" business, "my" business, and "God's" business.  We humans, other-abled, "disabled" or "not" all have a preoccupation with "your" business and "God's" business, which is at the root of our suffering, our anxiety, our malaise and discomfort at the center of our Soul.

Even up to this very moment, the mind and thoughts and feelings of others, while not always, can be quite daunting and hard to grasp for me.  With my ACC I have a great deal of difficulty with social communications beyond a point.  I have been "trained well", i.e., I've "learned" how to respond in social situations, (only through the school of hard knocks, mind you, not through an actual gestalt or holistic understanding), and I'm also quite good at gaining rapport, quickly and completely with people...but don't know what to do with them, once they are in my "inner circle" so to speak.

One of the ways I have tried to deal with this in my life (not all that successfully, mind you) is to obsess and imagine what people must be doing, thinking (about me), and how they are responding.  With my symptoms I am deeply right brain dominant, even fMRI shows this to be true.  With my faulty working memory (the very shortest of short term memory, the "swap" memory of the mental process), often my brain will manufacture solutions, thoughts, memories, entire trains of thought that are not based in the physical world.  To be certain, everyone, every human ever born does this...however with a Corpus Callosum they are far more capable of sorting out their "internal world" from the "external world," than I.

 We drive on the highway, someone cuts us off, and the thought that bubbles up, "you bastard, why are you doing that to me, you are so "________" and "______." They shouldn't have done "_____," "____" shouldn't have happened."

Yet, do we ever stop to ask "do I know that this is true?"  Are we in that person's head who cut us off?  Do we know what they are thinking?  Furthermore, "this shouldn't have happened."  Do we really believe that the universe conspired to cut us off on the 405, or even that person?  Did they sit there and plot how they were going to piss us off by cutting us off in traffic?

These are everyday examples of everyday people.  If you want a glimpse in what it is like to live as me, Anandagurudasa Singh (Joseph) Galbraith, whatever...multiply the above times 1,000.  Imagine if you imagination were allowed to run, and you had little or no way of correlating external events with it at all, even if such did really exist....the story of my life.

God's business, your business, my business.  The only (ultimately) thing that I have any control over (or seem to, at any rate) is my business.  And, (I know, don't start a sentence with and,) what is that business you might ask?  It is simple, what is my response in any given situation?  Our personality, our body mind, is a great boat, a great ship given to us by/through/as God to navigate this world.  We have oars, and we have the rudder of our own will and desire, but ultimately, we still have to be fully aware that the Ocean will take us where it wants to, and we have to direct our ship within that reality.  However, sitting there bitching about the wind and waves about how they should be other than what they are; is nothing but unproductive, and worse self sabotaging.  

I've brought my own social circle down to those few that we share mutual love, understanding, desires and the like...the best I can do with my rudder. This is Guru's Hukam for me, that I live out this body and personality and neurology that I have been given.  Accepting this gratefully, has brought me such long lasting peace and comfort, in my own skin.

Funny that for someone who is largely socially challenged, this life experience has driven me deeply into introspection on human behavior, albeit seen from a perspective that would be utterly foreign to most.  While my world is smaller, it has expanded exponentially.  Learning the difference and balance between, my oars and rudder, the the Waves of the Ocean, and their similarity.  Every day, pushing my own boundaries, just a bit, so I can educate the world what it's like to live like me (and many of you) with ACC.

_/\__ <3

Saturday, January 5, 2013

All or Nothing Thinking...

Rigid Thinking...


Another common theme that can be seen with Agenesis of the Corpus Callosum;

I suppose they will know more in coming years, as for me, I always question "chicken or egg."  This is what I mean:


I have such a fowled up short term memory, as well as an auditory processing glitch.  Even before I understood all this, and about my ACC, I very much consciously chose being "ritualistic" about so many things, so that, much like when you repeat a phone number to store it in your working memory (the very part I have an issue in), I know I will get to step 1, step 2, step 3, etc...  

I am prone to believe the research stating that many of us ACCers are "rigid thinking," although I'm not quite sure the public fully understands what that even means.  What "you" or "they" see "wow, he is just so stubborn, he doesn't want to accept the "facts" etc..." 

But, my reality is that I have to hold onto every thought tightly, if I am to remember "all of the pieces" of what I am currently dealing with/working with... This is for me, all the more concrete.  I can place something down, on a table, bench, in the car, (wherever) and literally forget it in 15 seconds...not just forget where it is, but sometimes even that it exists.  What comes to mind is a bottle of bleach that I put down on the kitchen floor by the door a few weeks ago.  I'd set it down, and went back to look for it, couldn't find it.  At one point even, my eyes are seeing/examining the bleach bottle, but I can't reach out to grab it, because I cannot "see" it or "it simply isn't there"...then a few minutes later, something "clicks",  and I realized I'm staring right at it.

We (let me stick with I, I'd rather be specific and not generalize) tend to obsess about my version of reality, and the way "I do things" because I'd been led to, taught to, and only knew to distrust my thoughts, emotions, etc.  When people would react badly, I would modify (read "dampen") my personality to "fit in"...but this is assuming I really understood/understand what that even means and how to obtain it, at least in the way the "average person" does.

Seen from the outside, I clearly admit, it seems utterly bizarre, but, you know, after all; this is my life and I get to live it to it's fullest extent possible, without judgement, anger, hatred, abuse.  We are all different, I'm just "differently different." LOL

The other side of the rigid thinking stuff,  I believe, anyhow, is that it is a learned response as I mention above, but that the reason it is, is because of what many of us excel at. fMRI and other devices show that many ACCers spend a majority of their time "in their right brain."  This isn't saying the left is dormant, that cannot be, but we tend to learn and communicate in the holistic or wholistic, artistic, emotional, creative processes of the mind.  I have great difficulty with confabulation.  If my mind doesn't get the answer fast enough, it can manufacture the answer, and for me it is true, even if it "never happened."  The only way I learned (prior to my diagnoses) that anything like this was happening is that people kept pointing out to me "my lies" or "my errors." etc....and without the diagnoses one questions there own sanity...but now I know and understand, and will not be anyone's doormat.  I may be "inconvenient" at times, but if you don't care to get to know me, and understand why, then our social connection and relationship will not happen, because I'm not interested.  This isn't an excuse to treat other people unlike myself badly, rather a chance to educate.

~A Boy with a Whole in His Head.

Thursday, January 3, 2013

"it's all Greek to me" vs "hammer down the crooked nail"

I amused when I consider, it took the doctors fourty five years to find my Agenesis Corpus Callosum... I have always known that I saw the world differently than other people, but, how the hell was I supposed to tell them that?  That's like I speak Latin, and you speak Greek, and further more I think in Hungarian (I dunno, just picking at languages, to make my point lol.)


What I don't find amusing at all, is the we live in a society that spouts individualism, yet if it doesn't look like "my" individualism, than it's wrong.  Rather than discover how to speak a child's "Greek" to use the above metaphor, and to understand that he is thinking in Hungarian on top of it...so instead we hammer down the crooked nail.

Our society is becoming increasingly focused on children passing a standardized test, yet not teaching them how to think for themselves.  One also has to consider that if a child does not fit into the mold society cuts out for them, they will be ostracized as the square peg in the round hole.  Is this really the legacy that we want to pass on to our posterity?  Those that society cannot hammer down into submission, are then shamed and hid in the darkness (of their minds, and of the world.)

This way of thinking finds its way into many different aspects of American life.  The disabled are seen as burdens, as not benefiting society, as not capable of doing so.  We are marginalized, and hidden; when we demand equal rights, we are told "we shouldn't get 'special' treatment."  And for those that have a "hidden disability" (it cannot be seen with the eyes) Americans often hold even more contempt...we use chemical to drug them into submission, with very little actual attention to the person or their disability. If this doesn't "work" we reject them, jail them, institutionalize them.  I am not only referring to mental illnesses, but also to developmental disabilities, learning disabilities, congenital brain defects and the like.

I can not even tell you how many times I have been told by people "you just don't want to try hard enough, there is nothing wrong with you", and other some such bullshit.  Oh, like I have 200,000,000 nerves missing from the center of my brain...yea, noooooo problem.... I mean what the fV<K, seriously?  I tortured myself for too many years, trying to "fix" myself, when I have never needed 'fixing' ."  I needed to accept the wonderful person I know myself to be, that I will never be  what my parents, society, or any "individual" wants me to be...I can only be myself. 

What is even sadder, if all these were not shamed and hidden away by society, not only would they "fit in" or even thrive, no, someone might hold the cure for cancer in their mind and experience.  Someone else might solve the energy crisis and global warming in one swoop.  Someone might fill the hearts of their loved ones, with pride, and joy, and unconditional love.  Someone might smile. 

All these many souls, send to the dark, forgotten places of society...they are our mothers, and fathers, brothers, and sisters, aunts, uncles, cousins, friends, or they should be.

The Victorian Age mentality in the United States (and many other parts of the world) is perverse, oppressive, unfair, dangerous to society on so many levels I cannot even count.  George Orwell 1984...from MY point of view, anyhow.

I no longer have to imagine what it might have looked like, had my condition been detected and I'd received early and continual intervention, ( not that my family didn't try, but information and resources were not available to them), what I might have become in life...I don't have to imagine, because I'm beginning to make a difference in the lives of parents with children born with ACC, and with those of us born with ACC...at the very least, an ear to hear them with, so that they can be heard. 

Over the next few months I want to do more research into this area, taping both sociological and psychological studies, as well as national statistics, particularly in regards to those of us with "hidden" disabilities, etc...should be interesting!

~A Boy With a Whole in His Head

Tuesday, January 1, 2013

2013; Onwards and Upwards...

I have been reflecting on the new year, and the year past (who hasn't right?)  So much has changed for me, gotten "better", or I really should say, more clear, more accurate, more understood, than ever before.

July 2012 was my 50th birthday, and so much seems to revolve around that time for me.  I spend the first half of my life (potentially first half) rediscovering the person I know and love, healing, forgiving, learning, strengthening...and to be sure all of these things will continue...but I am perfectly clear now, that the (potentially) second half of my life will be spent in service to others.

I understood early in life, that when the focus was on me, that I was entirely uncomfortable.  Hilarious, or sad, depending upon your point of view.  I had so many in my life accusing me of wanting to be the center of attention, etc...ad infinitum.  There is no doubt in my mind whatsoever, that  I do stand out... but this is not by choice.  It is a commonly observed trait with Agenesis Corpus Callosum in not being comfortable "towing the line" given by others.  We tend to want to follow our convictions, which, to be honest do not always seem logical to those around us, nor do we easily fit into society's so called "norms."

I also discovered early on, although I wasn't able to really benefit from this until much later in life, that when I serve others, am responsible for, or caring about others,  when I work towards selflessness, I can do amazing things, and am capable of things that I cannot possible do (consistently) for myself.  I also discovered how much joy it gives me.

During 2013 I will continue to work on the formation of a 501c3 non-profit corporation, aimed towards, education, referral and technology for children and adults with ACC and pACC.  Personally, I do think that education comes first.  I am pretty well disgusted with the state of things in our country regarding ignorance of developmental disabilities (actually, all disabilities in general as well), and how this ignorance has caused so much suffering for those of us born with this congenital defect, as well as their families.

I hear, time and time again, horrible stories from people my age, and younger with ACC, how we voluntarily socially isolate ourselves.  In many ways, in my observation we are indeed similar to people on the Autism Spectrum, however, I believe that many of the reasons may be different than they are for those peoples.

The one consistent thing, about anybody with pACC or ACC, is inconsistency.  This violates people's sensibilities, in that they can or do only judge an individual by how they appear to them, with no knowledge of why.  This wouldn't be correct either, often they make up stories as to why and "pin them on us" even though they are not true.   We have had our parents call us liars, and even psychopaths, and worse things (I will let you imagine.)

When people get to know us, they generally find us very charming, very much able to "bring you in the circle" (what people refer to as gaining rapport), but if you spend any time around us, those same people observe wild inconsistencies, and these same make "normal" people very uncomfortable.   A very simple example...on Monday I can absolutely love broccoli, and "I always have, it is the greatest thing in the world" (and I might even think it would cure the world's problems LOL), but on Wednesday, "I hate broccoli, I couldn't EVER imagine eating those horrible green tree things."  This is actually a true example from my life, but imagine this process permeating all of someone's life and you'll get an idea what it is like for many of us with ACC or pACC.

People with ACC are observed to have a very "floating sense of self" that changes often.  Funny thing, almost none of us see it this way (unless we look through the eyes of others.)  We may try to explain our "internal experience" to you, or what we think, but we may use words and expressions not even directly linked to (your) reality, leaving you puzzled, frightened or even angry.

Yet, I have been on a quest...A quest to "pre-educate" those who I need/want/have in my life.  It is not a question of "someday I might go 'off' " to be certain, there absolutely will be a day (many of them) where I "go off."  You'll see me disconnected to what is going on around me.  I'll appear to be telling stories about my life that aren't congruent with what you know (or think you know) about me.

I have so many loving and caring folks in my life now (we are also prone towards exaggeration  the ACC brain works "all or nothing" most often, so really about a half dozen wonderful peeps in my life) that accept me exactly as I am, with no reservation...They understand my "quirks" and how my brain works, and they give me the room, the space to be me.

So much is still unknown about Agenesis of the Corpus Callosum...yet researchers like Dr. Lynn Paul about function and Leanne K. Casaubon about the genetic causes of this disorder, as well as Warren S. Brown, Ph.D 's research on our psychosocial anomalies.... many in the fields of developmental disability learning how early intervention can radically change the outcome (change the lives of people) of those born with ACC or pACC...times are changing.

I am deeply saddened when I speak to many adults like myself, who choose to socially isolate ourselves, because of what I shared above.  There is still so much superstition, ignorance, social and religious bigotry and stigma placed on us (and all peoples with developmental, social, or mental disabilities) that many of our own families reject us, and even refuse to have us in their lives.

I firmly believe it does not have to be this way.  As people become educated things will (and are) change(ing.)  

For example, the first person I met with my congenital defect was Brianna Serrano, the sweet daughter of Angel and Araceli Serrano.  Brianna is a five year old girl with ACC as well as a trysome disorder that affects her lungs.  Honestly, that first meeting, was one of the best days of my life.  I know that her parents have a difficult time in meeting all of their children's needs, in regards to this disability and how it has effected their family.  An unusually large percentage of parents to DD kids get divorced, because simply, they do not have the knowledge and resources and support they need.  The small part I have played in the lives of these parents...I know that they can look forward in hope of who their beautiful daughter will become.  They also know what types of things to expect, and if not how to deal with them, where to go to get help.  

I spent the greater part of the afternoon the other day, meeting with "S" (name withheld for privacy) who was also born with ACC as well as other brain problems.  It was much like, well, not like meeting my twin, but like meeting my Siamese/Conjoined twin.  At least 10 times in our conversation, we finished each others sentences and experienced "spontaneous high fives."

It was like a warm balm spread all over me, my body, my mind, my emotions, my "me."  I had absolutely no doubt in my mind whatsoever, that she understood me, and I understood her.  

Sadly, I am finding that even when parents know about ACC, they often use that knowledge to victimize their children.  "Oh, THERE YOU GO AGAIN", etc...put downs, lowered expectations, outright emotional, verbal and physical violence, all out abandonment.  I know that parents like Angel and Celi will love and support their daughter, no matter what...the result of this, is more of the "warm balm" I mention above.

I cannot go back and educate my parents, I cannot change my past, but I can change the future, I can shape the future.  I can make sure, that parents of children with pACC and ACC have the knowledge, the skills, and the support they need to watch their children thrive...beaming in pride for the little wonders that their children truly are.  Nothing else matters to me now.

A very holy man Mahatma Ghandi said: 

" You must be the change you want to see in the world. " and " As human beings, our greatness lies not so much in being able to remake the world – that is the myth of the atomic age – as in being able to remake ourselves. "

 This is the maxim, the mantra by which I will lead my life in 2013 and beyond....may it be so for all.

May all beings be happy
May all beings be free from suffering
May all beings know Peace

Anandagurudasa Singh (Joseph) Galbraith