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

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