Friday, April 27, 2012

the Structure of Reality...

All I'm saying is simply this, that all life is interrelated, that somehow we're caught in an inescapable network of mutuality tied in a single garment of destiny. Whatever affects one directly affects all indirectly. For some strange reason, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the interrelated structure of reality.

~the Rev. Dr. Martin Luther King Jr.

I have been contemplating the wisdom of Dr. King..I think he's so much more of a man, so much more the visionary than we often give him credit for. He wasn't just for racial equality, by socio-economic, political, education, equality and integration on all human levels.  Buddhists call it PratÄ«tyasamutpāda, or the doctrine of dependent origination, and dependent arising.  all phenomena are arising together in a mutually interdependent web of cause and effect.  I'm convinced that Dr. King saw all humanity as the children of God.  We are interrelated and interdependent not only with each other, but with all life and "reality" that surrounds us.   This interrelationship goes to the very depths of who we are.

The metaphor I like the most is that the Vast Universe and its worlds are one large orchestral choir, singing a song of joy to the Almighty with a full accompaniment of instruments.  What would this grand production be like, say, if the sting section could not play, or perhaps percussion?  'twould be incomplete, and partial!  We are each a unique instrument in the hands of Consciousness, and can play the tune like no one else can.  Who are we to judge others (or ourselves) as to the need, quality, and sincerity of our particularity, our individuality, our instrument?

I know if Dr. King were alive today, he'd stand up for the cause of economic freedom, equality and security...I know he would stand up where he saw civil (read human) rights denied an individual.    I think had he lived long enough to see American society evolve to its current form that he would stand up for the rights of the disabled.  He would stand up where ever he saw humanity be shut down and put away so as to not be seen.  I dare think, although no one knows for sure, that Dr. King, would (again, with the "given" that he were still alive today) stand up for the rights of gay and lesbian couples who wish to marry.  Let's not forget that it was only in the 70s where stigma even began to lessen regarding "mixed race" couples.  So much has changed, yet so much more needs to be done.

If living with this disability has taught me one thing, its that treating everyone with compassion, and nonviolently standing up against injustice is the human thing to do.  I know that if I am have suffered, or am suffering, that certainly all others in the world are as well.  What can I do to ease all of our burdens?  I cannot fathom how we think skin color, culture, disability, gender, sexual orientation separates us in any possible way?  We are  who we aught to be!

Reading Dr. King has helped me understand so many of these issues, and of course he learned much from Ghandi, who in turn was himself responding to the words of Jesus in the Gospel According to Matthew...It is all in one round.  The Holy Wisdom is not a possession of any one religion, scripture, ideology, but all of those are (most often) watered down (through the ages) versions of the Mystical Doctrine.  As one of my Gurus has said to me "Dead Gurus Don't Kick Ass."  In short it means the farther we are away from the source of information, the more we distort it.  Nevertheless, the Original Intent still exists, the ideas are there in, as it were the Perennial Philosophy.

Just like Dr. King, I believe in a day of fullness of mankind's destiny as children of God.  Perhaps when we stop behaving as children, and start living as if it were true thing will change.

~Just Joe

Tuesday, April 24, 2012

Aristophanes Child

People ask me what its like being born AgCC, well, I remember writing this, just after my diagnoses...after years of disgust, self hatred and shame, it came into focus for me, who I was, this unique person who lacks the major neural gateway in the brain, the Corpus Callosum...

It was the "aha" that changed my life, my focus, towards being preventative, proactive and productive using what knowledge there is about my and similar conditions. 

Its called Aristophanes Child: 

We humans walk around, so conflicted so divided, trying to heal an elusive wound that we intuit but can't place our hands on, can't quite grasp with language, can't point it to it and say "here, this is what's broken, now fix it." 
Some other humans provide menus of options from which to choose...too much of this, too little of that etc...they evaluate the book solely by its cover, and decide "your a red book" or a "blue book." They hope and work towards altering the cover of the book, as it were to be more in accordance with everyone else, for "surely this must be the wound we are trying to heal." Sometimes this approach works for a time, but often it just warps and changes the book's cover beyond recognition. The book then, it still just that, the wound remains. 
Since earliest childhood life was a struggle, and yet, within my being I knew this wound to be only a surface scratch, so utterly obsessed upon as to become the center for years of my attention or even distraction. I was a boy divided. 
So many years later, I'm blessed to have been given tools and skills to be able to lift the dusty old mangled cover of my book and begin to examine its pages from within. I've discovered the source of my suffering, to not even be that elusive wound after all. 
Lifting the old dusty cover and peering within I've found a novel of astounding breadth and depth, which such wisdom as to betray even my most intensive research. 
I am Aristophanes' child to be certain. Rather than Plato's "love of one soul inhabiting two bodies", I have always felt I was rather two men faced in opposite directions carwheeling down the road of life, fully aware of each other, but never quite facing each other; "The left hand not knowing what the right hand is doing" spoken of by Mathew the apostle........ 

I am so thankful for thoughtful reflection of all the good that has come to me, and just wanted to share that with my friends. I stumbled across it this morning while reading my old journals, it was written just days after I was given the diagnoses. 

May all beings be happy and free, 
~Just Joe

Monday, April 23, 2012

How wide the Ocean how deep the Sea...

I have spent the majority of my 49 years fearing emotion.  My fear, driven from years of lacking the emotional, social and cognitive skills so easily understood by my peers...would have me either paralyzed in fear of my emotions out of "control" or its other extreme, unwillingness to engage others for fear of the all too familiar "they don't understand me, I don't understand them."  The truth is, some of this fear is based in a valid observation of the situation...

I must say, life looks very different for me on the receiving end of quality healthcare, quality medical and disability advocacy.  I've been talking about the new medication protocol I'm on and how its been the most consistent and all encompassing change and improvement in all areas of "EF" or executive function.   In a a nutshell, on almost every mental and developmental  level I've shown a moderate and consistent levels of functioning, my day to day life reaching more of a balance or normalcy (I hate that word.) Even so, with my much improved daily life, comes the struggle with the normalcy of things.  I've been deeply effective by and considered myself a "victim" of "my condition" for most of my life.  Its not my view now.  I love my normal, I embrace it, it is who I am.  My normal will never look like yours however, because, after all it is your normal.  There are far more variations in brain and neurology, personality, etc... within the human gene pool, than we'd like to admit.

Along with embracing my whole person, I've had to welcome with open arms emotions that for the majority of my life were experienced overwhelming and with very little cognitive connectedness as to their origins.  And then comes the recognition that this is true of all people, perhaps not in the same way or to the same depth as I that all people share this struggle on some level...how normal it is :-)

I'm exploring sadness, fear, abandonment, trust, humor, disease progressing in the body of one who I dearly care for....anxiety over what the "future will hold for me."  all this as if I'd never known them before...These are just thoughts, emotions...and while they are necessary and relevant to normal function in the "normal" world, we are so much more than our thinking allows us to see...There is One in the background, or so it appears for me, that is the Witness to all of this...There is sight, and the one who sees; there is sound and the one who hears; there is touch and the one who feels... And I trust that One with every fiber of my being, and always have.  I have nothing to fear.

I am not always successful, no one is really, but I spend my life now in endless examination of who or what is behind this world of appearances...and again, there is chopping wood, carrying water, doing the laundry, etc...the way of integrating all of this into daily life.  But again, not everybody is all too successful in translating what they know to what they do.  

I want people with all type of identified disability, and especially anyone who's been identified as AgCC or some other type of collosul disorders, or those caring for a child with one...there is hope.  My thinking is to be proactive, preventive, and productive in response to one's disability, and while recognizing the need for accommodations should they arise, understand this is a difference, it is your, or your child's normal.  Celebrate it, even when it causes great difficulty because you are a unique, they are  unique individuals and have their own personal gift and contribution to the world.
~Just Joe

Sunday, April 22, 2012

Chop Wood and Carry Water...

I have been considering lately, what happens (to me) as I grow more accustom to, become familiar with "Just Joe" and all his intricate and special differences, nuances.  There is so much about "normalcy" that I am uncomfortable with.  I find that this is probably true for all peoples, but in my case it's as if I were born with a set of blinders put over my eyes, and only in my 40s I realized this, and in my late 40s able to, to a large extent extricate my flesh from the blinders imposed upon me.

I'm experiencing lately I high level of emotional and energy regulation that is, for all intents and purposes a new thing for me.  I tend (lately) not to swing far to the left or right of my inborn rigid thinking, but am able to sort of take the reins, so to speak and surf the rapids a bit better.  Mind you, I don't know that I'll ever be able to do this the way it looks for others...but that is OK too.

I have always felt any kind of emotional response, with such intensity as to betray the rich origins of the emotion, often settling on one aspect on it, my right brain obsessing and creating an entire reality of it, that may or may not be so.  Other's might think this a horrible thing, and yes, while had I not been born with AgCC my emotional and mental life might look more like yours, but at the same time I would miss so much.  Learning about, and embracing the whole me including my weak and strong points, has allowed me, to a large extent, to be proactive, preemptive, and more precognate about my life experiences, from minor to all encompassing.

I've never experienced the death of a loved one before, strike that, I've never experienced the death of a loved one before, up close and personal, and devoid of the type of fear and anxiety that I would normally run from, with all my might.  I have worked in hospice on and off for many years, mostly AIDS and cancer hospice.  I'd lost people close to me, but have never allowed myself to feel fully everything entailed in it, the good, the bad, and the ugly; for fear that it might send me into another spiral of which I have been so familiar all my life.

Troya
Now, the very person who I've grown to care for as a sister...is in this very position herself.  I don't think I've ever experienced the kind of powerlessness that I feel over the situation, yet it is ok...I don't know that I've ever experienced firsthand this kind of lonliness, frustration or sadness...but it is ok.  The richness of our emotions is something I've feared most of my life, and tried, without success to squash like a bug...yet I'm beginning to realize what a fantastic gift it is.

Troya, at the very least has been a potent catalyst for change in my life.  She often said that when I first came back to SoCal, the person she saw before me, didn't quite match up with the person she knew I was...that I hadn't caught up to myself yet.

This is so true.  One of my dearest of teachers told me a few years ago, that I would not even be able to recognize myself in a few years.  I seriously doubted the truth of this, and yet it has turned out to be a major point in my life.  It is almost as if I am learning about, and getting to know myself for the very first time, without so many of the limitations placed on me by myself as well as others.

The one who can experience all things, emotions, situations, confusions, sadness, and still go on.  Still see benefit.  Still see the hand of the Divine in all things.  The one who no longer (most times) crumbles under the weight of a drowning sea of oppressive emotion, rather rides the waves of Life.  I have never known this person.  I chose the title of this post, largely from the title of a book on meditation and enlightenment, because I thought it so telling.  It is that before we become enlightened to life, our job is to chop wood, carry water, do the laundry...and so it is afterwards, when the Lamp of Wisdom has been lit within our soul, we are told to go out there, and chop wood, carry water, do the laundry, now, not just for ourselves, but for all others.

All this being said, I'm for the first time understanding that not only the dying go through the stages of death that Elizabeth Kubler Ross spoke of, but so do those who are being left behind, albeit in a different fashion.  Yet, I'm not only finding sore and painful points within my soul, but the most tender, most loving, most self effacing and serving person that I've ever gotten to know.  Someone awake and aware as Troya is bound to be of great service in death as she has been in life.  She has revealed to me that I am also that servant, and that in service to the Divine with find our true strength and joy.

I  (we) would appreciate your prayers, Light and support.  We do not ask for a specific thing that we know to be the will of the Divine, yet we do ask that Its will be done in us...for strength, life, light, peace, joy, continence, wisdom and understanding, and the ability to embrace the goodness that is before us in this present moment.  My love to you, all my friends and family.

~Just Joe

Thursday, April 19, 2012

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

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 it...in 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 me...in 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, April 16, 2012

Neurological Strangeness...

I have had some neurological issues for most of my adult life (like, you're kidding right LOL?) and they have been causing some major disturbance, and possibly even danger, so my Dr and case manager have me going to see my neurologist.  While I've had migraines most all of my life, what is happening now is different.  It's happened maybe a dozen times that I know of throughout my life, but gotten much worse.

not my scans (btw!)
Under duress I'm having episodes of extreme head pain and TGA or transient global amnesia.  It looks like this:  I'll be sitting there talking with someone, or doing some activity and I can start to have real head pain...unlike migraine pain it is my entire head, then real confusion comes on, sometimes where I'm not even sure of who I am, where I am etc...In my 20s this happened one time and lasted for up to an hour, but other episodes until recently have only been short, say 30 minutes or more.  At issue is that whatever is going on, I can't remember sequence of events and such, and sometime don't remember any of it.  Afterwards I have been known to sleep for very long periods of time.

Talking with my neurologist today, whom I already have a good Dr/patient relationship with, he indicated that these most definitely did not sound like typical migraines.  Luckily I have all uptodate brain scans, so we know that there are no new anomalies, abnormalities outside of my AgCC birth defect.  This does lead to the conclusion though, that something in my abnormal neurology/physiology is triggered under stress and these episodes are happening.

The times I do remember, can be extraordinarily frightening, and confusing, and I'm worried that come the time I am living alone again, as I do not know, honestly how long we will all have Troya with us...I'm worried I could be somewhere or in a situation where this could have dangerous consequences.  

My Dr. bless his cute little soul (yep, he is actually a cute small guy, what can I say? LOL) scheduled an EEG for 8am, and I'm only allowed to sleep 4 hours max the night before.  OH JOY!  I'm usually in bed around 9pm every night, so this is going to be rather interesting.  No caffeine either.  He explained that the idea is to have me as stressed as possible (Oh JOY again?) I am so not a happy camper.

the Freemont Bridge
I remember the first time (that I recall) this happening to me.  i was in my late 20s living in Portland, OR...and my life, at the time, was not good.  While I had no relationship with my family, by this point they pretty much cut me out of their lives.  I was dealing with my disability, dealing with coming to terms with being a gay man, and many other stresses and was suicidal at the time.  I was driving on the (I believe to be) largest span bridge in Portland the Freemont bridge, and as I neared the high point, I had no idea where I was, who I was, no Portland, no Joseph, extreme confusion...and almost had a car accident...I ended up pulling off the road in NW portland, in utter fear for what seemed a long time, I'm guessing could have been 30 or 40 minutes, but I'll never really know.  Two weeks after this I downed a bottle of prescription meds and a fifth of Vodka and tried to end my life.  They say my heart did stop on the table, but the only thing I remember was gaining consciousness some days later.  The doctor told me that he had even contacted my parents while I was in the ER (the first time) but they refused to have anything to do with me...I really don't remember much of those days.

I am so grateful for the fine medical help that I'd received, I know I wouldn't be here today otherwise.  And even looking backwards, as horrible as my life was back then, today I've so much joy, if not still daily struggles like we all have.  While it's different for everyone with AgCC, many of us have related neurological issues all of our lives, many that go undiagnosed until they reach a crisis point.  While its painful to even think of those days anymore, I have so much to live for, to love for.  I knew from a very young age, that things were not "right" with me...and I don't mean in a 'moral' way, but "communications", "wiring", etc...diagnoses of AgCC has altogether been a great blessing.  I can proactively move through life now, with a better knowledge of my unique situation.  I can only think about the many others out there like myself that have yet to discover this disability, and the needless suffering they'll undergo because of that.  This is why I'm so verbal out it.

Life has become good, or at least I can see I see the possibility of good in my life now.  I cannot ask for anything more than this.  I do recognize that perhaps I'm not more stressed than I've ever been before...but...with my current regimen of medication, therapy (physical/emotional/mental) I'm perhaps more able to recognize the impact of stressors on my life.  This is good, and bad I imagine.  While I can't think of anything I would rather be doing than caring for my ill friend...one who means so much to me, the impact of watching her decline can be overwhelming at times.  I know this much, that there are others in the world that experience the self same thing.  It sounds strange maybe, but I take comfort in this.  I take comfort in my discomfort...in my ability to face these life situations first hand without going deeper into decompensation and illness myself.

Troya and I spent a good part of the day yesterday at the memorial of our good friend Steven Ayers...a man who was an example of selfless love, joy, humility, humor, wisdom and sobriety.  Although I'd not known him nearly as long as many others have, he was in a way, a grandfather figure to me.  He will be missed greatly by many.  While his requiem was held at B.O.T.A., our fraternal organization, so many peoples, from so many walks of life came yesterday to honor and remember him.  His wife Sandy, received in his stead a chip commemorating his 40 years of sobriety.  This loving many reached his sobriety before I was yet 10 years old.  Up until the very end, he had so much Life pouring forth out of him to others, it seeped through every crack, through every pore.  One had only to be in his presence and experience his tenderness and humility, to understand the miraculous, to understand Love.

Steven and Sandy meant much to me.  As I said, I scarcely knew them nearly as well as others, but I remember when meeting them, they treated me as their own...I felt like his grandchild, if only for a short time in my life.

Life can be very difficult for people with AgCC, especially when undiagnosed.  I myself have been estranged from my own family for decades.  I admit, this is and was partially my own choice, and that I couldn't for the life of me imagine what it was like to parent me, or to be my sibling.  My behavior, my reactions, my communications (or lack thereof) have always been "all over the place."  Its not surprising that family members either misunderstanding, or not knowing at all about this disability and its implications distance themselves from those they love.  I never once doubted their love.  For many years, though I doubted my own worthiness to be loved.  I now know this to be a malicious poison...I've come to love and accept myself...largely in part to people like Troya, Steven, Sandy, my friend Sandy in Texas, and others, that through my storms of life held firm in their love, faith and belief in me.

Recent Picture of Troya
I believe in the Great Cycle of All things...and I know that these special people, in a sense will move on, but never really leave me, or I them...but it still hurts, its still painful...Part of me fears of what will come when Troya does eventually pass away...yet for the first time, I recognize this part of me, this child within me...and I can give him comfort, I can assure him that there will always be new Life in a different form, new frienships, new loves in new packages.  The power of Life that is Love has been exponentially multiplying and magnifying itself into countless forms, peoples, situations and things, and this will always be so.  

Rather than fear the future, I have an overwhelming love of the present, of the blessing, the fleeting moment, (all things exists in this fleeting moment), yet if I am preoccupied with making it "stay" or what "exists" in the past, I miss the Beauty that is right before me.  So much to learn, so much to experience, so much to Know.
~Just Joe

Tuesday, April 10, 2012

The "N" Word...

It's not what you think...The N word I wish to write about is "Normative" or normal...it is a vulgar concept, and again by vulgar I mean commonly accepted meaning of the word.

So much has happened for me over the past years and months, I'm finding myself having to redefine the concept as it applies to me.  Since the diagnoses of AgCC and the subsequent application of new therapy and new medication protocols my life has changed radically.  More than I ever could have imagined happening.

This isn't to say that life is problem free, that its a "rose garden" and all that.  In many ways its probably similar to yours or anyone else's life to be honest.  It is this that I want to write about.

There is a portion of the disabled person (at least this disabled person) that you could say becomes "codependent upon itself."  That may seem a strange concept to many but I'll try to explain:

This latest protocol of medication and treatment I am on has improved so many areas of my life, cognitive, emotional, social on some levels, and others I can't even bring to mind.  While I've always had a high degree of intelligence (in the top 10 percent or higher) I've, for most of my life had great difficulty in areas that people might never even think about.  The longer I am on this protocol so many of those things have become simply a "bad memory."  This is not to say there is no room for improvement...I think whoever believes such a thing as that is either deluded, insane or evil.  

While talking with my case manager, I was explaining how I am having difficulty integrating with the normative experience that I seem to have in my life right now.  There is a part of me, all of us actually, I'm assuming, that depends upon its dysfunctional, disabled and broken parts.  Since I've improved so much in many of these areas it is all a new experience to me.  The normative aspect of things I am finding ever so slightly irritating, and I'm always waiting for the other shoe to drop (and it doesn't.) 

My experiences of life have always seemed to me rather extreme, and I've always had to fight reality, or so it seems, in order to feel the least bit of stability and normality.  This isn't my experience any longer.  Sure, I'm unique...I'm still disabled/other abled, yet am finding that my ability to process thought and emotion, social intercourse and communication has improved...in many ways far beyond what I ever thought would be possible for me.

There exists a part of my psychology, that feels empty for want of that needy broken individual to care for.

Troya

In talking with my case manager, I'm also coming to realize that many of the thoughts, emotions, and mental processes I am experiencing now (many for the first time) are completely normal, that everyone at some time experiences them.  I'm speaking about such things as the overwhelming grief and anxiety of watching my best friend waste away from ovarian cancer.  In fact my case manager, she used the word(s) soul mate.  I'd always considered that to mean an intimate (physical) relationship, but upon closer examination I see that its not so.

Troya, in many ways is like me.  I'd not say that she or I are in any way anti-social, perhaps through genetics or experience or both we find ourselves largely asocial.  I think I can at least speak for myself and include her somewhat in saying that we both get that very few in the world experience life in the way that we do, have the same type of internal and external priorities that we do.  We've both always been happy with a group of select  few friends and such that fit in comfortably with our needs.

When I moved back to SoCal, I'd been very ill, the insurance I'd had in the State of Texas was awful, there was no way I would have gotten the physical and mental health care I needed to save my life.  I'd not even realized until I had begun my own chemotherapy that Troya had only just finished chemo herself when I arrived back in SoCal.  Yet, this special person extended her unconditional love and trust, even in light of all she knew about me.  She was for me a rare opportunity to "tell it all", uncovering all the varied parts of me, those that excelled, and those that appeared broken and disjointed.  She never flinched though.  

This makes the struggle I'm currently undergoing even stranger and more uncomfortable than I ever could have imagined.  I do not want to see her suffer (and I am seeing her suffer.) And I know that time will come when she will drop the body and no longer be with me physically.  At first I thought it a forbidden thought, ugly and unacceptable, as I was sharing with my case manager that there is a part of me that wishes it were all over, and that I could get on with my life.  I'd been thinking this was largely because of my newly found normative life, the ease with which so much is occurring for me now, and my simply wanting to "move on with things."  And this is where it gets tricky...

She (my case manager) explained to me, while that certainly might be  part of the equation, that there was much I hadn't yet looked at.  She explained how utterly normal my reaction and thoughts are when two that care for each other deeply know that the time will soon end.  She explained that part of me doesn't want to go through the pain of seeing her decline, and doesn't want her to go through the pain of decline either.  She explained that it is common for loved ones to want it just to "be over" and it is no way selfish or ugly or evil, only a normal part of the human pysche wanting to avoid personal pain and the pain of watching someone suffer. I could never have imagined, in my wildest nightmares that such a thing was true.  I felt guilt and shame, and yet there is no need...what I am going through is common in the human experience...and I hate it.

Strangely, there is also a part of me reveling in my ability to recognize and go through what is "common" and "normal" amongst the human race.  In fact, this entire experience reinforces for me, just how normative it is.  I never have liked the word normal.  It is an entirely subjective term based on accepted thoughts of how things should be.  But how can anyone claim to know what is right for another?  What society, religion, politics and philosophy says is "normal" is really only a consensus opinion.  This is not to say such things aren't necessary, on some level they always are for humanity to function with killing themselves (more than we presently are.)  Yet, at the same time, it is this subjective consensus built in xenophobic governments, educations systems, religions and philosophies, that at the same time are fully responsible for the death, disease, hunger war and murder in the world.  Of this I am certain.

I wonder if, in a world where we were each individually accepted on face value...who and what we were, what we individually can contribute (and can't) sans judgment, if I'd have had as much difficulty in my life, even taking my disability into account?  I wonder if the same is not true for each and every other individual on the planet either?

As major parts of my life are improving, and my ability to process thoughts and emotions is becoming more streamlined than ever before, I am realizing the pain and suffering of others...more intensely, and more deep than I could have imagined...and as such I am realize my own real pain and suffering.  This is not a dark and dreary or grim outcome.  In many ways I welcome it with open arms.  I have always intuitively understood and held to the unitive nature of existence, the Ground of Being, if you will.  I can remember as an extremely young child knowing without any doubt, that things were not as they appeared, that all creation is sourced in the One Consciousness, that some call God, or Truth or Reality. I remember Light in Extension, without limitation, in fact I can see and experience it even now.

Knowing this, in light of my own personality and individuality, I've spent my life avoiding pain and embracing pleasure/comfort.  Truly not much different from others.  Yet these days, I have come to realize that the entire package is a good one.  Without pain and suffering, we cannot know comfort and joy.  And its not so much comfort and pleasure that are "evil" or end in spiritual decadence, rather its our clinging to it as if it were something permanent, more real than that Light of which I spoke of.

I imagine to many, this post may seem more rambling than most of them I've done, and that's ok, it is as it should be.  I just want to express that I am so grateful to be alive,  I am grateful to feel pain, grateful to know pleasure and joy, grateful to spend time with those that I love and care for.  An entire new emotional world has opened up to me.  Very typical of AgCC folk, we can have extreme emotional presentation, and yet if anyone (let alone a therapist or Dr) were to ask us to clearly define the experience, often we lack the language to do so...which lead/leads for many into years of unnecessary suffering prior to a correct diagnoses.  I am so grateful that a drug, a medication that mankind has developed is actually changing much of my brain chemistry.  For the first time, I can look at love, hate, fear, trust, joy and suffering and actually know them in a way I never could before...Joy is wonderful, and yes, even so is pain.

While it is my personal belief, I do believe and accept that God/Truth/Reality/Consciousness both expresses and experiences life through all manifestation, God sees through the eyes of rock, and stream, flower and tree, you and me...it enriches my life beyond measure to know that who I think myself to be is but the tiniest reflection of the All, and yet It has only me to both express and to know Life as it flows through me...and that the same can be said of all beings, things, and activities...It is so wonderful to no longer have to fight life. To embrace all that comes, and to know that it is ok, and yes, that it is even "normal", brings me peace beyond understanding.    My only hope and prayer is that this become true for others as well.

If I had not known the unconditional love, acceptance and appreciation of another, like Troya, how could I possibly one day mourn the same?  What would it (or would it not) mean to me?  Everything in life, regardless of how it appears is a divine gift, so precious, so precious.

~Just Joe



Wednesday, April 4, 2012

I'M NOT ON PCP: Educating Law Enforcement about Autism

While I don't have an Aspbergers diagnoses, AgCC can look so much like it at times...I could have almost created this same video, almost word for word in my own experiences.

I think this guy is smart and brave and I'm really glad to have seen his video.