Thursday, May 24, 2012

Standing on the Shoulders of Giants...

"If I have seen further it is by standing on the shoulders of giants."
~ Sir Isaac Newton, 1676
My view may be a bit different from others.  Yes, I do believe that we stand on the shoulders of giants.  But it is my experience that everybody is a giant to somebody else.  Wisdom, ingenuity, sincerity, life experience...we each contain "information through observation" if you will.   I have been contemplating the life of Kim Peak, the real "Rain Man" that the movie was written about.  I am amazed with AgCC, how each one of us is still born with unique skills abilities and weaknesses.  

Because of his AgCC Kim was able to read a book with two eyes.  Let me explain.  He would read the left page with his left eye, right with his right eye, and remember 100% of what he read, all while doing it in roughly 1/10th the time it would take an "average" or "normal" person.  Yet he was in some ways profoundly developmentally disabled.  Autism did not quite fit him.  He loved to engage people, was emotive, genuine, yet could not survive without the help of his father who was by his side all of his life.    In my view he is a giant.  Scientists have learned so much by studying his condition.  It is my hope that I can play a small part in this.  I'm seriously considering donating my brain at death to one of the greater Universities doing AgCC research.  

I'm no Rain Man, but like everyone I do have unique abilities.  It is just that I've not recognized them all yet, because I've been weighed down by society's insistence that I think, talk, behave just like every one else, when frankly that's not possible.  

The study of the Corpus Callosum is bearing out some interesting observations.  It seems that the CC might be responsible for far more than "simply" allowing the right and left sides to communicate.  In some way it enables all of the higher cognitive faculties to work at speeds and depths improbable or impossible without it...

In the near future I will be talking about a respected national publication coming out with an article in depth on AgCC, in which I will be interviewed.  I feel obliged to not speak of it until its actual publication.  Having said that, I'm excited to be able to share with the world what it is like living with this congenital brain defect.  Interesting at best, Dante's 7th level of hell at worst, but usually somewhere in the middle of that these days.   

I'm grateful to live in a time where they can even study such a thing as this abnormality and see what they can learn about the brain and behavior.  While I fully believe I've lived before, and will live again, in another body, when this one gets old, it will be discarded like an old tattered dress, as the Bhagavad Gita says...I could not imagine living in the dark times with this.  In fact, while this disability is never easy, I envy those that are younger than me, and know of it, being proactive and effective to improve their quality of life...I didn't know that AgCC was at the foundation of all my issues until 4 years ago.  The most empowering thing in my entire life to date was being given the diagnoses, what I'd lived with, and intuitively knew "something was wrong" (um, so did the doctors), but no one knew what it was, the big AHAAA!

~Just Joe
~may all beings be happy and free

Monday, May 21, 2012

How to Navigate in Foreign Lands; or A Day in the Life...

I have been thinking a lot lately that being other-abled, disabled, whatever one wishes to call it, that whatever we are is still largely stigmatized in "modern" culture, and as far as we really have come regarding equal rights and equal access for the disabled, the right to work, the right to decided one's own healthcare and housing, equal access to public facilities...yet these are only a beginning.

I spend a lot of time time trying (and retrying) to meet the needs of others best I can, but mostly trying to make sure my needs are met.  I'm not trying to make this a personal thing, in fact the first thing I realized is that it is the plight of disabled people in the country and around the world.

I think, largely because man sees themselves as somehow a greater more intelligent being, top of the food chain, etc... as a result of their greater intelligence, the coherence of something known as mind, will, and ego etc..and I suppose in once sense this it true.  It's my own observation however, and I stand to be corrected if I'm wrong;  but it seems to me that anything that threatens (hu)mankind's sense of self or intelligence is a taboo subject, to be swept under the rug or into the closet so that it doesn't have to be seen, so it doesn't have to remind us of our own human frailties.

I love my family, and my parents.  Typical middle class hard working parent raising two children, one with special needs, with little to no resources as to the cause of all of it...I wish I could tell them now, but, they are my heroes.  Yet, in my parents world view that mental, emotional, and developmental problems were moral weakness.  While this may not have been said in so many words, it is definitely what was communicated.  I don't blame them.  First, coping with the "supposed" shame there were taught to feel over the issue, and second, there was really no way of them knowing when I was born about this condition (AgCC), as it is only in recent years that it has been scanned for successfully in infants and even in Utero.  They never knew what they were actually dealing with, like I do today.

Getting back to my original point, society still, is not modeled after the inclusion of all minority classes, and especially I think this is true of the disabled.  Trying to get my needs met, people often become frustrated with me, because they think I am either being belligerent, ignorant, stupid  or just don't understand.  I am quite intelligent when it comes to rote knowledge, something literally memorized, yet quite often I'm misinterpreting either what others are telling me, or I am not capable of putting into words what it is I'm trying to say in words that they will understand.  This is mostly because of the fast pace we are living in today.  People are so much more less patient, not only with me, but with each other, and themselves today, than I remember in a long time.

It is time for the people of this land called Earth to recognize there are no foreigners within Her aliens.  We exist as part of this great organism, depend upon her for our very sustenance, like the child does its Mother.  We, each and every one of us Her children behave with intolerance towards anything or anyone that  appears different that "I" do.  Yet each of us exist to add our individuality to the fullness that is Life.  We are each and all unique possessing various gifts, strengths, weaknesses, colors, hues, contrasts.   When we ignore any one given value the entire glorious appearance of Life on this Earth becomes infected with hatred and indifference, in thought, word and/or action.  When I am not allowed to be fully myself, neither are you, but by your own doing.  This is my homestead, I've claimed my little land and set my roots, laid the foundation;  get over it, I'm going to be here for a little while!

I tire of trying to survive in a world that disrespects me, brushes me to the side and tells me "wait over there" because I am different.  I am not sure how conscious people are that they do this, to be honest, but that makes it no less hurtful to the recipient.  I hunger to find my niche, as one person with AgCC called it recently. I hunger to find more fully how to benefit the lives of others around me, as well as myself.  I will never fit in to society's image(s) of what and who I should be...albeit I don't believe anyone really ever does anyhow.  Imagine all of your life living in Europe but only having maps for the USA...but since only you can read your maps, nobody else sees any problem, and they tell you "nothing wrong, you just need to try harder."  Blithering idiots, do people really think that someone enjoys major dysfunctions in their lives?  OY!  (I believe that was my first rant on ABWAWIHH !)

 So proud of the direction the country is moving in regards to equal rights for the GLBT community, So proud of the president, regardless of whether or not a calculated move, he has always supported equal rights for the GLBT.  Now if this could only migrate over into the disabled community, so much has changed for the good, so much more needs to still happen.

May all beings be happy and free,
~Just Joe

Wednesday, May 16, 2012

You Are Not Alone- Video of ACCers

Worth sharing again, a video that includes many ACC men, women, boys and girls...we are all flowers in Maa's garden!

Infinite Diversity in Infinite Combinations, and the Plasticity of the Brain

I'm intrigued by something seen when observing those of us born without the Corpus Callosum. I've met enough of us now, to know that there seems to be an entire spectrum of disability and ability, symptom, manifestation of the ACC birth defect, etc... In short:  I wonder why and by what mechanism those of us born without a CC adapt and function in the world.  In science speak, each of us born with ACC have very distinctly different phenotypes, while we all share many of the more common developmental, communications,  and socialization issues in common, how this "plays out in the person's life is as individual as is the person.  

The question remains, by what power do our non callosul brains rewire or make best use of whatever the current neurology is.  This power of adaptation, this plasticity of the brain.  This research excites me.

On the more science fiction side of things, I remember discussing with a Dr. the possibility that one day my own stem cells could be used to grow me a corpus callosum.  I commented that I wouldn't think the brain could adapt to such changes and they pretty much agreed with me.  Yet, there is the study of plasticity of our neurology.  In short, selling ourselves short on this with the old fashioned view that of course the brain and mind could not adapt to such a cloned CC.  

The brain retains its unique ability towards adaptation, especially in the first months and years of our lives.  Neurons actually migrating throughout the brain and spinal column.  Why should we automatically assume the brain and the living organism could not itself adapt to such a change? 

Anyhow, I've always liked mental experiments, so I had to turn it inside out.  Who would that person I know myself to be change, or would he even?  I don't mean neurologically but functionally would a person's world view change or would it, given such an adaptation were possible?  I'll probably never know, but it was an interesting idea to follow. :-)

I hear there has been success in cloning bovine CC, but at the least ambivalent, in honesty the idea of animal experimentation makes me nauseous. 

And now back to your regularly scheduled programming...

~Just Joe

Spirituality and AgCC...the many faces of the One... X 2

So, while I've touched on this subject before I've tried my darnedest to tread gently.  I know spirituality and religion can be a sore point for many people.  I'm different in that way though, and I can attribute the difference in large part to aspects of my AgCC.  Honestly it is this aspect of my life that has given me the most depth, most room for growth and change.

One of the characteristics of AgCC born folk, as I've mentioned in the past is rigidity in thinking.  You might even say thinking, believing, "knowing" etc... How this has played out in my own life is rather interesting.  Since my earliest days I have had an innate knowledge, I guess one could say, of the Unity, of the Love and Truth that under girds and sustains all things.  Where I'd had issues for many decades was in my trying to find an intellectual expression of this, a "black and white" explanation of something that I inherently lack the language to express to others.  These days in my life, I've had a profound resolution in this area, yet not in the way you might think.

I've talked to quite a few adults and some children with AgCC and it is definitely true, without the corpus callosum we tend to be very black and white about things.  Regarding spirituality and religion we tend to gravitate towards, perhaps not extreme expressions of faith and morals, rather very one sided.  We often create very painful conflicts for ourselves when our expectations of consistency in matters of faith conflict with the reality around us.  Also, as an aside, we are far more likely to be victims of sexual and emotional abuse, as we lack the necessary social judgment regarding boundaries and appropriateness etc...

In my own life, I remember very, very early...that I was seeking that type of "answer" for myself.  I was an intelligent and precocious child, my parents had me baptized as in infant in the Episcopal Church.  I can remember even then, that "religion" such that it was seemed to hold an answer for me, yet the conflict of the reality of my life never allowed me to find a "safe haven" thought, faith, belief etc...I was also one of the many children with (and without) AgCC that fell victim of sexual abuse at a very young age.   There was so much conflict in my life, not to mention at puberty my attractions were clearly for the same gender and not for women.

My parents were, for the most part loving and supportive, if not understanding of my exploits and investigation into the spiritual nature.  Over the years of my childhood, I explore my native, if nominal Christianity, and, it's not so much that I found it innacurate, but I found it lacking.  Years since, I've deeply investigated many different religious and spiritual expressions from all over this planet.  Within each, finding unplumbable  depth and irrelevantly narrow thinking.  Its as if the Creator stood before a mirror which represents all we can see and know...somehow, this mirror is (or appears) shattered on the ground laying before the Creator...shards of glass thrown every which way...each still reflects the One Creative Personality the Adipuruush to anglicize a Sanskrit term...but each does so not "imperfectly" but from their own unique perspectives and positions.  All possible thoughts that intelligent beings will ever have are these very shards of glass that reflect from a personal perspective, it fully knows it, but its expression is bound to the individuals perception of It.

I instinctively understood this from a very young age, but with my disability, the rigid black and white thinking, my thoughts told me over and again that one of these shards of glass must be "the" most accurate, correct, untainted shard of glass.  Each expression of spirituality, politic, religion, thought, philosophy, my little brain would take and make an abolute truth.  The irony of this is that, in my understanding, all knowable "truth" is subject to the conditions surrounding the one who knows short, all revealed, known, sensed, perceived "truth" is the relative perspective of a shard of glass, not inaccurate nor incorrect, but relative, limited, bound to circumstance and perspective...but it is not so with Truth.

The idea of infallible Truth, at least that which can be communicated with language, is patently absurd to me now...and again, I include all forms of knowledge, science, mathematics, history, politics, religion, law...It is not that I think any or all of these are invalid and useless, no, my view is far from that.  Each realm or domain of knowledge excels in communicating a particular perspective.  And its use and relevance is tied to those conditions, but perfectly.  Take Bereshit, or the "Book of Genesis" for example...fundamentalists of all ilk destroy the spiritual power of a historic and religious document like this, by insisting it is portraying scientific truth.  It is most certainly communicating ancient truths, very (awesomely) powerful ones, but the early Christians, Jews, and their predecessors did not take this  treatise as a scientific teaching...they understood the domains of knowledge...that while they could and sometimes did cross over this is not always the case, they excel and telling a specific view of Truth, but cannot address it directly as such.

To watch this battle play out in my brain, in my thoughts and in the mind, and particularly now that between excellent medical care and treatment...I have this unique perspective...I see, and work with this disordered thought process in myself, true, but I see it reflected in everything going on around invective politics in this country, its mixture with our beliefs both religious and scientific....we all seem to be fighting saying "I have the answer, yours is mistaken..." not being able to see and benefit from what I refer to as the Relative Rainbow.  The rainbow is a sign of a covenant between God and mankind...  Consciousness Itself seeking out all possible expressions of Itself.

So, I "allow" this rigid thinking now, working with it, in retrospect...but I recognize that it is what my brain is doing, and I am not my brain...can I make a different choice?

Can we make a different choice?  Can we not point out (only) our differences?  Can we benefit from the rich variety of experiences of peoples of all kinds, thoughts, persuasions?  Is not every moment in our existence at teachable moment?

~Just Joe

Monday, May 14, 2012

Somebody that I used to know...

Simply amazing voices, and I just wanted to share them:

One of these things is not like the other...Round peg square hole etc...

I am experiencing some frustration at not fitting in to society, such that it is...I was intrigued by someone who I am chatting with in an ACC group on Yahoo, for privacy sake I'll call him "R."  He described his struggle to fit in, with the 9-5 type of job, and how he found his niche, his freedom to express his own unique self, selling art.  I realized when he was sharing this story with us, that I was in that moment unsure if I had the self esteem and resolve to find my niche in life.

I think what R discovered I've always known intuitively, but putting it into concrete action is hard for me.  I do understand that I don't need to compare myself to anyone else, let alone someone who I consider "normal" (whatever the hell that really is.)  Where I glitch, is the idea that I will never fit in, never disappear into the background as just part of what is "regular" and normal.  I continually want to consider vocations and expressions that are, for all intents and purposes beyond me.  I have to be careful not to think those thing above me though.  

I've spent much of my life trying to warp who I know myself to be, into the image of what others want.  All the while, I am my own judge, jury, and executioner.  I experience shame, guilt and despondency to change...if I allow what others think that I should be, how they think I should "show up in the world", if I allow this to be the center of my attention then my feet are stuck in the quicksand of self hatred...and this does not go to a nice place.

What R was talking about, was no more or less than anyone's struggle to belong.  While the outright mistreatment of the disabled in the workplace still going on....I mean no one is going to fire you and tell you it is because you are "weird" or "different" or "arrogant" or "slow" (I can think of more derogatory terms, but that will suffice), but it happens every day.   While things are changing rapidly in our country, toward the civil rights of the GLBT, I have confidence that there will come a day when the country will recon with its history of institutionalization of the disabled...we are supposedly somehow "different" than abled people, while many would not say it to our face, they treat us as if we are less a human being than them...this will change too, it is the meanwhile? 

While my journey is everyone else's, just finding where I fit in, it has been so much more difficult for me, than it has for the abled person.  I've had to struggle with the ignorance and maltreatment of others.  Even in my own family, there was an unspoken idea that mental/emotional/developmental illnesses do not exist, that there is only moral weakness.  I was told over and over to just try harder.  Well.., that trying harder was really like continually bashing myself with a mallet, just to make others happy.  I want not only to accept but to celebrate who I am.  I want to nourish this curiosity in me, that I could also like R find his place.  The most encouraging thing for me that he related was that when he found his niche working with art and such that he never looked back.  

In my spiritual discipline we say that we are all flowers, in the Divine Mother's garden.  That is, all beings make up the wondrous tapestry of flowers in the world.  I must believe that this world would be that much impoverished were it not for my own uniquely strange and different flower, and of yours this is true also.  We flourish when we support the best in all beings, not just in ourselves.  We just have to find out where we look best in the garden and plant ourselves there.

May all beings be happy and free
~Just Joe

Monday, May 7, 2012

One must try everyday to expand one's limits

"One must try everyday to expand one's limits."

 -Mas Oyama

These words of Kyokushinkai Karate's founder Mas Oyama have been a mantra or constant thought about what it takes to thrive and be happy in least they've served that function for me.  Albeit the way I practice it is far more measured and gentle than in times past.

I have found that for much of my life, I bought the stereotype of disability that society would place on me, and I did so hook, line and sinker.  In doing this and treating myself as somehow damaged goods, I can end up viewing myself in a very "fixed" fashion...i.e., I can never change, so why bother trying.  This is akin to treating oneself as a "fixed quantity."  I've also come to realize how dangerous and self defeating this thinking is for me.  Another thing I have always told myself is "if you're not learning, your dead."    This, I still believe and think very deeply.  

The nature of an organism is adaptation, growth, change.  Just because my physical adaptation/genetic mutation assures that my understanding of and communication of the world doesn't work like "normal" people's...Does not mean that I cannot continue to grow, adapt, increase in both understanding of and functioning within the parameters of my personal experience.  I've learned that I must grow, must change, must challenge those areas of myself that appear fixed to me...allow a certain level of discomfort, knowing that it can lead to change. 

Now, I have no doubts that there are limits in my life that I will never traverse, am unable to, etc...and I'm fine with this too.  The only way there can be growth for me (or anyone else imo) is if we test our limits our boundaries.  I'm also imperfect in my implementation,  as I know there are areas of my life that, if not unwilling, I am no ready to quite deal with.

I've recently had the pleasure of communicating with ACC adults and an adult about their ACC child. What amazes me about this disorder is the large spectrum we all fall on.  Dependent upon other factors, including other genetic brain abnormalities and the like, most ACC folk fall somewhere in the general range of intelligence. Some have profound developmental delays, some are super intelligent.  It seems that this disability manifests many different forms, prior to even taking into account "intelligence."

Many of the parents of ACC kids watch them coming along just fine in development, and then the children hit the age, around 12, where the normal CC begans to "rev up" speed up and become more efficient.  This normally shows as an increase in executive functions, particularly in the realm of social skills...communications, etc.  This is where I really began to show the issues I was born with.

From a very young age I was called "hyperactive" (many years before ADHD was even a diagnoses.)  While this was a major issue in school and life, and really held me back from my potential, I think (personally) the real disaster for me was around puberty.  I knew for certain that I spoke well, I was a great charmer (or so I thought), people's initial impression of me, always thought of me highly...but then in my interactions with people, especially my peers, it was obvious that I wasn't "catching on."

Many of my doctors have said, (and I quote) that mine is the "most profound case of ADHD they've ever seen."  Even as an adult I have the "H" component bigtime.  When I was placed on my current drug protocol, Stattera,  it was pretty miraculous.  I'd been placed on stimulants all of my life, on and off.  The most they ever helped with was some focus of my "immediate" attention (what was in front of me.)  Even so, out of countrol impulse control, runaway confabulating thoughts, was my "way of life."  This does not seem to be the case anymore.  Within 2 weeks of beginning Strattera, many, many, areas of functioning showed profound and stable improvement.  I no longer have static anxiety....My impulse control dysfunction, on a one to ten scale was probably an 8 in severity, I would now call a 3 or 4.  Many times now, prior to my "going with" the confabulations in my brain, I'm able to recognize that "my head went somewhere with that," and have been able to take another path, make another choice.

I never in my entire life thought I would see improvements of this kind.  The funny thing is, now, that I of course still have many areas of dysfunction, some tied to my ACC, some I'm sure learned behavior...and I recognize some is likely not to ever change...and I'm ok with that.  Firstly, I never thought possible the changes that are in my life now, so I am a lot more open to possiblity.  Secondly, I have a better grasp through my ACC diagnoses, and the spot on therapy I'm getting, to recognize what may or may not be a learned response, rather than a "wired" one, and when I do recognize this, I very slowly and very carefully  push the boundaries back a bit.

I'm also an adult who went though both psychological and sexual abuse, both as a child and adult.  I thank God for good parenting, the abuse while coming through a family member did not come through my mom and dad...I don't think I could've ever gotten over it, were that the case.  Regardless, in therapy I've come to realize that many of my reactions to things are severe PTSD type responses.  I'll be sitting there, and for no reason (that I can see) something will trigger fear, danger, abandonment feelings that are utterly overwhelming.  In the past, my even looking at such things would be enough to unhinge me mentally.

While I don't "dig" for such things, when they come up now, I can, for the most part, open my arms to them.  The experiences and feelings of PTSD manifest in the body, often without mental content, (or that content has been so suppressed in the mind that only what is in the body remains.  I've had great difficulty in my life with emotional regulation, and so facing my emotions has always been an "all or nothing" kind of experience.  Now, through proper medication, through skills taught to me by therapy, and even by Life itself, I am able to more closely examine these painful areas with no (more) fear that I'm going to emotionally go "off the deep end."

In short, what I have to say to ACC adults, children, and adults who are parents of them...Your child is unique, you are unique.  You are not broken.  Being born with a different set of equipment your experience of the world is different, it is not broken, but it is different.  You have a unique skill set, unknown by anyone but yourself.  I know you also have challenges that you find daunting, things that you try over and over again, that never seem to work.  Guess what?  This is true for every person ever born...and while not playing it down, I know our differences can be in the center of huge issues...You and I, We, have all the skills and abilities necessary to not only succeed but to thrive in life, regardless of where you show up or fit in with it.  If we accept the idea we are broken, than nothing will become of our lives...If you accept the idea that we are different, we fit in the world perfectly.

I think the biggest area for me that I would like to continue seeing growth is in the whole "social skills" arena.  I know there are things that will always daunt me, and yet I don't know what my limitations are...nobody wrote a book and said: "Joseph, you can do these things, and you can't do those!" This is probably the area of my life that ACC shows up most painfully in.  But I will never know unless I push back at the boundaries...the newly formed butterfly pushing against the sides of his cocoon prison...I'll never know, lest I pierce the walls of my prison with effort, desire, intent to grow, to change and to develop.

I've always said that if we stop learning than we are dead... and I really do believe this.  It is not our jobs to put ourselves up against others in comparison and judge ourselves...rather excitedly and inquisitively pushing our limitations with our awareness.  The one single most thing that I have gained in recent years in regards to my ACC is the ability to speak about it, to have a common internal language that can be related to others so they can understand too.  May it be so for you to.

~Just Joe