Monday, June 18, 2012

Fining Tuning My Thoughts and Purpose...

While on the outset I have striven to have my blog be about educating the public about Agenesis of the Corpus Callosum I've used my blog also as I way to look inside the mind of someone with AgCC, hence why I'm so free with my personality and opinions, etc...

I've been considering for quite a while the different ways that I might be able to do this, and ways that might benefit more people.

I know that I will eventually publish a book, I feel that not only is my story worth telling, but that it might possibly be found useful and helpful by others.  I've been writing for years, and when I can write (type, I can't barely hand write for very long) I tend to be a bit more focused maybe than the types of things I post on the blog.

I'm also beginning the process of exploring the possibility of a non-profit organization with the goal of research, education, referral and peer support.  I rightfully expect this process to go on for a while.  I'm in "the market" for people who would be willing to help me brainstorm, consider, plan and implement a non-profit.

I feel that in order for me to publish my book I need much of the same kind of coaching and direction.  I'm both prolific and talented, although I can be a bit broad and need help both narrowing down my focus, planning my audience and creating a structure that I can "write into" that will help me better accomplish this.

Anyhow, just a few thoughts... :-)

~Justa Guy

Tuesday, June 12, 2012

The New Normal...the Limitation that Leads to Expansion...

I am having issues with my new normal! Although it might be more accurate to call it my "all time normal."  You might be wondering what I'm talking about, so let me explain:

Many think that accepting limitation is defeatist and below them.  I would argue that any growth and change in Life, any expansion, relies upon the limitations one is presented with in Life in order to flourish.  I, like many others find this limitation uncomfortable at times, likely do to my shortsightedness.  Other times, this rubs me the wrong way because I also know that I am filled with limitless possibility.  

There are many examples of this law of dynamic balance that exists between limitation and expansion...The gravity and other forces that hold our solar system in balance being a prime example.  The restriction caused by the sun's gravity allows the planets within its sphere to run their courses, and in the case of Earth to sustain carbon based life.  The planetary orbits would most surely decay very quickly, were it not for the sun's limitation upon them.

This dynamic balance exists within modern psychology, it exists as well in ancient thought, spirituality and religion.  It is particularly found, both in the Kabbalah and within Eastern thought as well as both Eastern and Western astrology.  This idea of dynamic tension exists within quantum physics as well.

Returning to my main point, my "new normal" has in itself been a liberating experience.  There are some, I'm sure that would call my disability limiting, and they are by no means incorrect.  I would add however;  There is a sense, (my sense, my life experience) where it isn't limitation, it is who I am on a neurophysiological level...and I'd better get used to it, it's all there is.  I find it hard to let go of plans and goals that weren't even really mine to begin with.  Both by my rearing and by society I was taught implicitly, that there are certain things that "normal" people do, in "normal" society, etc...and of course as far as goes law and civility this is accurate, however the expectations inculcated within from an early age still effect each one of us deeply and color our will and way.  This doesn't have to be a bad thing, in fact, every day parents teach their children world over love, respect, equality, democracy...perhaps not in the same for that exists in our culture, but whose to say ours is any better  anyhow?

I'm learning to be comfortable in my skin.  I am an (almost) 50 year old man, and I've seen people of all ages go through profound changes throughout life as have I, however the fact remains I was born without the Corpus Callosum, due to genetic defect.

There are things I do great, I have a lot of talent, passion, and energy.  Yet every day I live with extreme short term memory loss, confabulation, emotional and attentional regulation issues.  While skills that I have gained in recent years have enabled me to improve all of these things and my own quality of life, they don't go away...they won't "get better."  At the same time, I will learn, improve, benefit from new studies on AgCC, and from the team of people helping me medically and more.

Yet, the closer I get to embracing my "normal", I find that I still want to compare myself to people all the time.  When I say people, I am not referring to specific peoples, rather my thinking puts it into "me" vs. "them", them being everyone else but me.  I still struggle with the feeling that I am not good enough, because I am not like "them."  I wonder, what is it that causes me to latch on to this thought pattern, this feeling, and not want to let go?  I'm frustrated with how "wired" I appear to be to all of my upbringing and social conditioning about "just be like everybody else."  I mean seriously, how can I be like "everybody" I'm just me, and so are you.  While I understand this intellectually, it still occasionally causes me much distress because those types of thoughts start surfacing again.  To be sure, even after we change a (psychological) behavior or habit, the "seed" of the old habit still exists and will come up until such time as that behavior is both automatic and consistent for a long time.  In short I still "go there."

I've worked through so much shame.  I was told by many including my own parents "why can't you just be like everybody else?"  Sometimes with my ACC, I'm literally "back there" at 17 being told this by my father, I can see his face as clearly as I can see my own in a's like a haunting image.  It used to come up often just like this as I would drift off to sleep at night.  To be fair, I love my dad, and I'm not in any way disparaging him, that man did everything within his power to support, help and protect me for many years...

You see, even western society while explicitly condoning individuality, implicitly demands everyone's homogeneity, unlike the homogeneity found in some Asian cultures like China and Japan, this one is founded on a person's "public face" or what Carl Jung called the Persona.

So, anyhow, I still find myself constantly being put up against an impossible image of what "everybody else" is like.  My problem with this, please tell me, I've never met anyone who wasn't "different"...who then can in any honestly say we should all be alike?  What an f*ck!ng boring place this would be.   If all I am aspiring to become in this is becoming entirely comfortable in my own skin, then so be it! Each and every day I can experience more of being comfortable with myself, much like a hand fits in a custom glove... but it takes one step at time...left...right...left...right...and onward.

May all beings be happy and free...
~Just Joe

My Apologies...

I'm not posting nearly as often as a few months ago, as responsibilities and such, many other things on my plate.  You'all can also visit my more "hair down and tongue out" personality of Facebook my ID is "Justa Guy" with the space and without the quotes. Thought I'd share my Facebook cover photo:

Oh, and I will be getting a new post out in a few days.  May all beings be happy and free...
~Just Joe

Saturday, June 2, 2012

I Don't Want Your Pity Just Your Understanding Would Be Nice...

If you are my friend, let me be clear.  I have never wanted your pity, but I would prefer that you try to understand me.  My reasons for writing this blog are as clear to me today as when I posted the first entry.  Experiencing firsthand, how my disability has affected practically every aspect of my life, but never knowing exactly what it was that was wrong, through many doctors and years of partial or incorrect diagnoses; I want to educated the public about Agenesis Corpus Callosum.  

While I still have, as do we all, my daily struggles with life and living, my life just a scant 5 years ago, cannot even compute anymore.  I am really grateful to receive the quality medical care that has so adequately risen to the challenge of providing me with those things necessary, armed with this new information to really begin to enjoy my life, learn how to cope with and live with my differences, while at the same time realizing that within my own particular strange world of ACC there still is no limit on the Soul.

While I must remain ever aware of the fact, I no longer need to focus my attention towards what I cannot do.  I'm all too d@mn intimate with the knowledge, believe me.  Today however I attempt to redirect my attention to what I can do, and what I do do.  Accepting limitation can certainly be limiting, but in other ways it can be profoundly liberating.

After all, pity denotes sympathy and empathy...and such is not possible unless we have walked in the shoes of our object of pity...not "oh you poor thing, such a sad shame you're not normal like the rest of pitiful..." I would rather think that unlike pity understood today to be a term of condescension it refers to state in which having had a similar if not identical experience you understand that the object of your pity might just as simply be hold ones self lower than another, long enough to contemplate what this other human being experiences and open up to the experience.  At the very least, confront your own unfounded suspicions with an actual unbiased communication with the object that you scorn.

If however you are one that goes through life and what they don't know they ask, the world becomes their oyster, whomever and whatever the come into contact with they learn to bridle their judgement with curiosity.  

I've had people assume that I was being, well, honestly all sort of things...stubborn, hateful, angry indignant, manipulative...and hosts of other things, because they believed that my words and my behaviors were somehow directed in this way towards them.  With ACC it seems just as difficult and confusing to understand what others are communicating sometimes, as it is to communicate to someone else and have them understand what it is I'm actually trying to say.

I can be rather eloquent, more than oft times wordy, in writing.  If I feel comfortable in a situation at a given time, I can rattle off with the mouth, but the words coming out aren't adequately expressing what I'm  really trying to say.  What I mean is left unfocused I talk around most anything, but have difficulty describing the thing directly.  I remember when I came back to SoCal and I'd been living with Troya for just a few weeks...I was physically very ill with Hepatitis C and felt I had to walk on eggshells even for myself, my higher judgement skills, comprehension and organization skills, if normally inadequate were entirely not there.  I also felt I could not ask for anything directly, and so if I wanted you to make a sandwich, I didn't even know how to ask you, so instead can only tell you how hungry I am...i.e., a very passive aggressive kind of communication.  Well, a few weeks into it, I remember saying something to Troya like " I DON'T LIKE THAT THERE", or somesuch thing, and Troya laughs and shouts "well Thank God! It's about F*ck*ng Time!"  I'm very slowly learning that it is ok, not only to ask for help in meeting one's needs, but that it is OK to need.  

Whereas others often, understandable have absolutely no clue as to my thoughts, words and behaviors.  Troya had the forethought and wisdom to stand back, look at everything I was, and take it all into herself and accept it, accept me for who I was.  The key, the key beyond my diagnoses, my medications, my therapies and coachings and internal tools and self understanding that I have in recent years gained pale in comparison to one human being who was curious.  She wanted to know who I am, not who she or anyone else wanted me to be.  The power of human unconditional love and acceptance can transform lives, or more to the point, empower individuals toward change.  I cannot speak for anyone else's experience, but this is true in my own.