Wednesday, February 29, 2012

Lincoln Logs and the Lexicon of Doubt

Over the past week to ten days I have had the distinct blessing of connecting with long lost family...something I believed might never happen.  I've harbored so many of the negative thoughts, beliefs and memories of "how things 'were' " that I am now discovering that as I mention in other posts, there are so many thoughts and beliefs that we never question, never doubt...taking them at face value, then, creates a prison of our own making.

Before I discovered my AgCC, I was intent on making myself the victim, and the World "out there" the victimizer.  The mind, everyone's mind, does an extraordinary job of taking reality, warping and conforming it to our beliefs about reality.  Again, this much is true for everyone.  Having been introduced to The Work of Byron Katie, the most valuable of all tools I have ever been given, is the notion to question my beliefs.  Not just "big" beliefs, i.e.: politics, religion, etc...that's part of it, but not what I'm referring to here.

Looking back on many years of dysfunction, I now understand (in my gut, not just in my head) that family, friends, loved ones, acquaintances, ourselves...we haven't any choice but to respond to what appears before us, with the knowledge we have (or don't have), and move forward as to what we think is appropriate.

I've entertained the story of being the victim for so many years, that it has clouded my judgment, my history, even my memories.  If there had been positives, I mightn't even "remembered" them (re-member=reassemble, put back together) the way things truly were, but the way the mind insisted they were in light of my tightly held beliefs about me, my life, my history, etc...

Fast forward to 2012...:  I have begun to experience, at least for myself, how our most deeply held beliefs, and yes, even memories,  can be tainted.  Wrongly held thoughts and beliefs lead to suffering...the "one that is suffering" works diligently to reinforce those beliefs, out of fear for "its" survival...which reiterates more suffering, and on and on...but we can break those chains.

I have found it is not even necessary (nor really possible) to try and forcefully change our thoughts, it is not possible to "positive affirmation them away", (which the mind takes as a lie and defends itself against.)  Rather, we can simply treat our thoughts, as our own errant children.  I can ask, "is it true?", "is it absolutely true?"  And who knows, we may find that there is truth in it, and if we sit with it, not analyzing but sitting with it, we/I may find that it isn't, or might not really be true.  Even if we find it isn't, it may not be possible, and is usually counterproductive to challenge those thoughts and beliefs in a fight.

Making Space, where before was none!
I found that I can then go inside, asking myself, how it is I feel, how do I react, what happens when I believe the thought...?  And just sit with it, don't challenge it, let that sit in the quiet place inside, and come up with its own answer.  This most naturally leads to "what would happen if I could not believe the thought at all?" (in the same situation that provokes it in the first place.

This seems to create, in the mind, room to "nudge things around", making space where before there was none...and still, this does not mean we need to do anything with the thought/the belief.  And this is where the true magic see, what I've discovered for myself is if simply and only we allow the mind to look at all the possiblities, it may move,shift, change, all on its own, without our "help."

Anyway...over the past week of getting to know some of my long lost relations, I've had the opportunity to first hand reexamine so many of my thoughts and beliefs.  I'd held these "so close to the vest" that I didn't dare look at them, for fear (fear of what I now wonder) of what they might really show me.

My cousin "L" ( I prefer to protect other's privacy until/unless I'm told its unnecessary) and I, found each other on Facebook, and as we were chatting (just discovered one can use FB to chat...WAY kewl), many, many memories came bubbling to the surface...ones I'd all but (thought I'd) forgotten.  I remember her mom, my Aunt F (there goes initials again, just sayin' lol) and spending time over there house.  The cascade of memories began with a wondeful old set of Lincoln Logs..the real deal, not the new fangled plasticized mess.

drip, drip, drip
Allowing myself to consider, to remember this, was like drip, drip, water, soft, but capable of moving mountains...drip, drip, drip, Aunt F's face, her smile, drip, drip, drip, my cousins L and K, drip, drip, drip, my brother, my mom, my dad... water is soft, but OH so powerful.  

The tiniest crack, made by the accurate remembering of those who loved/love me...I'm both amazed and overwhelmed (in a good way.)  

The truth is, I've harbored so many negative memories...and perhaps some are true...but they blind us to the good.  I've been so afraid of doing The Work on my parents, or rather the fear in me has been so afraid...How could these wonderful people have been any different than they were?  I have let my fear drive me for years, it has kept me from knowing them, from reaching out...All I can think of now, is how much they did for me, how much they love me.

My first "Lincoln Log memory" in this regard, the first drip, drip, drip, was my dad teaching me how to ride my first bicycle (without training wheels.)  I SO remember my fear that I was never going to do it...I remember his patience...and I remember his joy when he finally pushed me off, and I pedaling like a mad person discovered one of my first freedoms.

I remember dad, an avid photographer, taking me in his work van very early on a Sunday morning to NYC...going through the wondrous, now empty streets...walking across the immense George Washington Bridge.

And I remember mom...on the very first day of kindergarten...she had no way of knowing, and I had no way of telling her, how horrified I was, that I felt like a pinball in a sea of other children that I could see, but not connect with.  On that morning I remember getting a (what I remember to be) large splinter in my finger from the block I was playing with...I think at that point I "wrote of" kindergarten! LOL)...but she was there for me.

I remember my tricycle, and when we discovered I was allergic to bee stings.  The curious little boy that I was, I saw this pretty brown and yellow thing on the handlebar, and I SLAPPED it hard...I remember my arm swelling up like a balloon...and mom was there...she was always there for me...drip, drip, only just take a little space, opening to possibilities.  (Byron) Katie has said she discovered that when she believed her thoughts/stories about what was/is she suffered, but when she questioned them she was free.  This is now my experience too.  I'm not saying that I don't have eons of misunderstanding to investigate, I surely do...but...I don't fear it anymore.  In fact, I invite it, embrace it, it is like an old friend come to show me how things really were, after all.

Overcome with love, grace and gratitude,
~Just Joe

Tuesday, February 28, 2012

Life, Death, and the Smell of Jasmine in the Air...

While I've always been one to share my thoughts, they can often be disorganized, or at the very least, not well defined enough to make sense to others.  I'm hoping today that this is not the case.

Many of you who know me, know full well who I am talking about when I mention by best friend/surrogate sister and roommate "T."  She has been, and continues to be a shining example of selflessness (she wouldn't admit to this, I'm sure, but hey, that in itself is a mark of selflessness.)  I've learned from her, that it is possible, and even beneficial to sometimes sacrifice our own perceived comfort in order for someone else to flourish and grow.

When I came here to SoCal a few years ago.  I had been terribly sick with Hepatitis C, so much so that I'd really given up fighting it, as the healthcare (both mental health) and medical/physical care in San Antonio Texas under Medicare was horrible.  As she describes it, she thought I was coming here to get better, but after I arrived, it was apparent to her that if things hadn't changed I'd likely have "checked out."  

I know T from a fraternal organization we both belong to, we'd been talking for some time online, and by telephone, but truly didn't know each other all that well.  T herself, had, a few years earlier been diagnosed with Ovarian Cancer, went through treatment, and was getting the all clear.  I hadn't even realized myself until much later, she herself had just been off of chemo a short time when I came here and started my treatment with Interferon and Ribavirin. I look back on this now, and I am truly humbled.

Daily, I had to take the drug Ribavirin, and every Sunday night for approximately 13 months had to inject myself with a dose of Interferon.  Up until this point in my life, I can think of very few things, that I'd ever been able to sustain a commitment to...but I knew that if I hadn't I'd likely not survive the ordeal.  One of the issues with multiple drug therapy for Hep C is compliance.  Normally, even with perfect compliance the success rate is under 50%.  Largely through her continued support and encouragement, her uncanny ability to keep steering me back to the goal with subtle hints (the only thing that works with me, cause if you "tell" me to do X, I'll want to do Z instead!) I had great success. Within, I think about 12 weeks of treatment, not only was I antibody negative for Hep C, but also RNA negative (which means, it not only drove down the viral count but completely eliminated the virus from my body.)  Its over a year now, since I finished this chemo, and my blood tests still show both antibody and RNA negative.

I know, without any doubt, I could not have done this without T.  I might have lasted just weeks and quit.  Even halfway through the treatment, after showing all the successful signs, I grew hateful and tired of the horrible side effects of these medications, I thought about quiting, even then.  But T would have none of it.  Her subtle, yet constant encouragement helped me pave the way to a new life.

Furthermore, as I've experienced a plethora of neurological symptoms, largely unidentified throughout my life, my doctors at Kaiser did a full brain and brainstem MRI scan.  This is when I discovered that I was AgCC.  This was probably the singlemost life changing (physical and medical) discovery of my entire life.

I remember calling T from the hospital on my cell phone, in utter disbelief...I wasn't even sure how I was feeling about it, I was so overwhelmed, and yet immediately I began the process of shedding years of self inflicted shame, self hatred, doubt and suffering.  In that moment, I knew I was "normal" (my normal) and now, nobody could tell me different.

Even so, T was there for me in other ways.  While the above is true, and I began a journey anew, of self acceptance, I'd still been under the old "I am disabled" delusions.  Not that I didn't have a disability, such is incontrovertible...but how I related to that knowledge, was and is entirely up to me.  God gave me the package, but also gave me the freedom to express how I understood and dealt with it.

T helped me begin to see and experience that while true, I have deficits in areas that most people find common and easy task, that I also have talents and abilities that come innately, largely as resulting from the same disability...such talents that people work hard all their lives to achieve and sometimes don't. 

We never know why things occur in the time and place that they do, but I must believe that it all occurs, perfectly, in its time, and for a reason.  Again, as Byron Katie says "that's God's/Reality's  business, and everytime I mind someone elses or God's I suffer." (paraphrase)  And yet, simply the acknowledgement, that all things happen for a reason brings me great comfort, and yes, even joy, in the face of life and death. Fast forward to March of 2012, and the evidence for this (to me) is even more stark than ever.

T, as many of you know, has been fighting Ovarian Cancer for some time, and while she'd been healthy all the time she was being there for me in her illness, her CAT scans kept coming back clean, it wasn't too long after I finished my treatment that the scans revealed the recurrence of cancer.  There is a reason for everything...

Surely it breaks my heart that this person who has supported some of my most major life changes has to battle this ugly disease, yet I find a little comfort in knowing that for the first time in my life I am fully capable of putting myself aside in deference of an other.  I couldn't think of anything I would rather be doing than caring for someone who I love so much in the time that she needs it the most.

It is the beginning of Spring in Southern California, and our wildly growing creeping Jasmine is exploding in all its pungent glory in the back yard.  I consider, I wait every year for it to bloom, then I bitch and moan about how strong its scent (it can fill the entire two story house we live in.)  In winter, we crave summer and cry about the cold...and in summer cry of heat and pine for the winter...and we forget, the beautiful scent of jasmine in the is here only for a short time, and then goes, never to be seen again (this year.)  God help us embrace the gifts we have before us, help us open our eyes to blessedness and fullness that is inescapable, and always and everywhere present...God thank you for T, this most special of friends, and thank you for the opportunity to serve, and to love.
~Just Joe

Monday, February 27, 2012

Is it Live or is it Memorex?

One of the oddball things I've noticed about AgCC is that we can instantaneously appear to be two different people.  My best friend and roommate "T" has often laughingly commented that she'll be reading a post that I am writing, or some email, or something on a group posting, and then we'll talk up and down the stairs at home in person.  She's noticed (as have I) that my mode of expression is 100% different in "written form" than it is "live."  And it has always been this way for me.  The fun part about it (sort of) is that this is all occurring at the same time. 

It isn't that, now I'm this, then I'm that...No, its as if two strikingly similar but very different people are communicating at the same time....Aaaah the joys of speaking out of two side of the brain at once!

I love to write, somehow, it gives me the ability to solidify my thoughts into a form that I can "hold" and further reflect on.  My verbal life, my "live" life is something that I have tremendous difficulty doing that with.  Not surprising.  I understand now, that unlike most others, my experience of social learning has never come from a live deductive experience...but learning by rote what is "expected of me."  I'm certainly capable of learning social skills, and in recent years I have grown leaps and bounds, frankly beyond anything I thought possible.  Yet, having said this I know that the implications of my words and actions "live" don't usually register.  Perhaps that's why I enjoy "Memorex" so much, I can record and reflect.

Dr. Lynn Paul on the TV show The Mind Brain Machine interviews a 20 year old man named Tony.  I can really relate to him.  While observations show skills and aptitude all over the map, something consistent with his experience and mine, is learning new behavior through social interaction alone is tremendously difficult.  He would be happy staying home, not relating, watching TV and avoiding the social milieu, and OH GOD I can sure relate.  However there are numerous other ways that slowly help people like he and I gain skills needed to be social in the world.  Whereas insight based therapies have been known to be largely unsuccessful with us, very solid instruction, like in Skinner's Behavioral Therapy, and C.B.T. (Cognitive Behavioral Therapy) and Dialectical Therapy help us to become far more successful.

I personal came across Dialectical therapy a few years ago.  It is successful where many therapies aren't, and with a variety of issues, not just AgCC.  Dialectical therapy for the most part deals with learning skills that promote emotional regulation, and uncover and help work with cognitive disconnects.  When I began to understand that much of my run away brain was made worse by my lack of ability in regulating my emotions, this alone went a long way in improving my day to day life.

I never just felt emotion, I felt it!  I thought I "was" the emotions, not that they were simply occuring...again, I believed I was my thoughts, that I was my emotions, not that I had thoughts and emotions.  Even today, while I have great difficulty with emotional flooding, it is nothing like in years past.  Although I'd practiced meditation (still do, on a daily basis) for many years, it was only with difficulty that I was able to "migrate" that experience into real life scenarios.  This has begun to change, and I'm so amazed, and (yep, tooting my own horn) am so proud of myself.  Its debatable, and has been for millennia if we ultimately have control, or if this is illusory.  I think it is both, at least this is so in my experience.  (Byron) Katie says that there are three kinds of business, yours, mine and God's...and if we are dabbling in any other than our own we create misery and suffering for ourselves.  I've pretty much made that a mantra lately, and it serves me well.
~Just Joe   

0 - 60 in 2.5 Seconds

In chatting with my nephew the other day, he mentioned something that "rang a bell" with me..big time...he said he has a history where he can get in trouble because he "over-thinks" things.  I was like "OMG gag me with a mango, that's me!" (Valley talk accent included!)

I call this the Zero to Sixty in Two.Five Seconds event.  At least in my case because I often mix up and confuse subtle cues...well the logical mind just doesn't cope with that all too well.  So in its "helpful" attempt to rectify the situation the imagination goes utterly wild.  It looks like this:

Your sitting here talking with me and having a conversation...I hear what you say, and perhaps, not being clear and understanding (not your fault) my mind instantaneously comes up with various scenarios of how things are...So far this is true for most people, however...where for most people this is a "behind the scenes" subconscious process that you're largely unaware of...I'm almost never unaware of it. Those comparisons, correlations (true or not) and computations flood my conscious mind with chatter, and in exasperation I'm liable to believe one (or more) of them, hook, link, and sinker.  Within that 2.5 seconds I not only create the scenario, but project it into the future, even with a "logical outcome" (that rarely is!)

So far, just one or two seconds have passed, your talking about the possibility of rain today, and I am chicken little and the sky is falling.  Makes for a lot of confusion, misunderstanding, and sometimes flat out people just think I'm really weird.  The first time, honestly, that I began to realize this happening was when I approached The Work of Byron Katie. I had never considered that we were not our thoughts/thinking.  A simple experiment proves otherwise.  Ask yourself "if I am my thoughts, then who or what is thinking/hearing/responding/feeling to them?  If we carefully approach this, say when we are waking up from sleep, we'll notice that at first no thoughts (or very few), then they start, completely on their own.  "I'm Joe...I'm in bed...I have to get up now, I have to brush my teeth" and on and on through the day.  Yet in deep sleep, before there is any "I", there are no thoughts.

The great sage Ramana Maharishi went even farther, considering that we are not thinking thoughts, they are thinking us.  The Western mystery schools refer to this as the collective consciousness, subconscious, akashik record.  There are no new thoughts under the sun, just old recycled ones, that we put on like our clothing, and they take on the appearance of being personal.  

I used to torture myself over the zero to sixty thing...primarily because I simply didn't recognize that it was, even in that split second timing, I catch myself asking "is it true?", "can I know that it is absolutely true?"  "how do I react when I believe that thought?"  "how do I react when I don't believe it?"  Truly magic...just sayin'.

Looking from the shoes of others in my life, I can now understand why I appeared to disjointed, disorganized and crazy....(I was LOL.)  All I can think of now, is the tremendous patience that so many have afforded me over the years...I smile, and I'm grateful.
~Just Joe

Sunday, February 26, 2012

Bill Moyers on Freedom of and From Religion

The Beginning or the End is only Consciousness

"Ribhu Gita" Chapter 3, Verses 33-37, SAT Temple, March 4, 2011 from Society of Abidance in Truth on Vimeo.

33. Abide as That in which there is no longer any meditative spiritual practice or ignorance or knowledge or activities of any kind, that which is the Supreme Reality - and with the firm conviction that you are That, be always happy.

34. Abide as That in which, when one is completely merged with It, one experiences pure bliss, never experiences misery, sees nothing, does not take birth again, never thinks oneself to be a separate individual, becomes the Supreme Being and with the conviction that you are That, be always happy.

35. Abide as That which is truly the Supreme Absolute Reality, the Supreme Formless God, the absolutely pure Being, the Supreme State, Absolute Consciousness, the Supreme Truth - and with the conviction that you are That, be always happy.

36. Abide as That which is the absolutely pure Supreme Being, absolute Bliss, the supremely subtle Being, the Self-Effulgent, non-dual and undifferentiated One - and with the conviction that you are That, be always happy.

37. Abide as That which is absolute Truth, supreme Tranquility, eternal Being, absolutely attributeless, the Self, the absolutely undifferentiated Supreme Being - and with the conviction that you are That, be always happy.

Saturday, February 25, 2012

The Apple Doesn't Fall Far from the Tree

This has got to be, one of the single most "happiest days of my life" in a very long time...

Those of you that read my posts, especially those close to me, have known of the strained relationship I've had with my family for so very long.  While there's enough room for blame all the way round, I don't care about that anymore.

On a social networking site I came across the profile for my nephew, let's call him "B."  I can hardly believe that it was him, but he messaged me back and accepted my invitation.  We just spend nearly an hour chatting online.  My only experience of him, prior to today, was two things, I held him when he was days/weeks old...that was the last I remember.  But he reminded me, that some years ago "on a sunny Friday afternoon" I spoke to him on the phone.  Then I remembered.

So many tears, so many years.  And while I could go on about how "my disability is to blame for my separation from my family, blah, blah blah" I don't want to go there, it doesn't matter.  When we don't question our thoughts, we suffer, enough said.

I come to find out that B is quite literally just like me.  While I haven't clearly confirmed that he may be ACC (he seems to think that was mentioned), he, like me has had lifelong issues around emotions, confabulation, and Tourette's Syndrome.  The more we talked, the more we both realized it was like looking in a mirror.  He doesn't have the social awkwardness that I have, but we do share many of the same problems and manifestations of "whatever."  Apparently he was told that his issues were inherited (big surprise there, ehh?) and although I "know the facts" about my own disability, and they are incontrovertible and medically proven, I still go through many cycles of self doubt.

Apparently, so does he.  There are no mistakes.  There is a time, and a season, for all things.  He is now 20 years old, has grown up, despite his disabilities into a fine man.  He'd mentioned that he'd been looking for me for 6 years, checking the social media site we use.  He even mentioned that my ID, which is Justa Guy, looked odd, and that he was going to reject the friend request, and how glad he was he didn't.  Oh My am I.  

The more we talked, I was utterly shocked, beyond anything imaginable.  We like to say "this person was just like me", and often we'll view reality in such a way that "makes it so."  But in this case, it really is.  I don't feel alone anymore.  The "apple" that fell from my brother's is just like me.  I have harbored a lot of beliefs, and while I think many of them are true, I simply know, that I don't know anymore.

I do know, that my parents, my brother and family likely became exasperated with me many years ago, emotionally I was all over the map.  And those of you that understand AgCC know that there is a lot of evidence that what was imagination in childhood contributes to something called "confabulation"  that can carry over into adulthood.  Many people might simply dismiss the phenomenon as wild bald faced lying. I know my parents did.  And yet, we with the condition don't know why we do what we do, we just do it.  I myself, remember telling my parents while in my 20s that I had ALS, and God knows, probably a dozen other things.  This wasn't necessarily lying.  Dr. Lynn Paul does a much better job at explaining the phenomenon, but suffice it to say that many AgCC/ACC people are believed to function largely in the right hemisphere...fantasy can equal reality...makes for us being wonderful poets, but we can confuse ourselves so much that we often mistake fantasy for reality.

B described much the same thing, telling me he'd say he had diabetes, etc...because it intrigued him.  I almost laughed so hard I fell off my seat, off the keyboard.  So I asked him, "...was it like this? Part of you, knew it wasn't true, but the fantasy part, the imagination so strong that you had to go with the thought, that in that moment it appeared both logical and true?"  And he answered in the affirmative.

While I don't wish these types of disability on anyone, I am thrilled to get to know my nephew, sad that he's had to deal with these types of things, but perhaps, there is indeed a time for everything under Heaven.  He's far more socially integrated than I was at his age, and he seems to have a really good sense of self-acceptance, something that didn't come about for me until recent years.  So I believe that he'll go really far in life because of that.

It isn't that my parents didn't work hard for my learning such self acceptance.  No doubt, my mother told me time and again that "I could do anything I put my mind to."  But, as in all families, at least modern American ones, our parents and parents even today, are filled with mixed messages.  As is talked about in the Alanon forum and others, we pass on our illness, or in this case our ignorance, and often it is done without our tacit knowledge or approval.

There is no doubt in my mind, my parents meant the very best, gave their all for me.  No one can possibly be responsible for what they do not, or cannot understand.  This is where forgiveness comes I said in an earlier post, forgiveness is understanding...anyhow...

B's "lost Uncle Scott" (Scott is my first name, Joseph my middle, that I've gone by since adolescence) isn't lost anymore.  Carefully navigating the waters of family life, I don't want to step on my brother or sister-in-laws feet, so I did let B know that he can share freely anything we'd talk about (that he cares to) and that I want to make sure it is ok with them.  I so  cannot blame them if they approach me cautiously, given the bizarre "track record" it seems I have with them.  I would do the same.  If they care to reach out and communicate with me, as has B, I'm here with open arms, needing nothing, offering everything.  

Moral of the story "When life gives you apples, make apple pie" (I don't know what that means in this case, but it sounds good! ROFLMAO)
~Justa Guy

True Forgiveness is Understanding....

It is not a feeling, it is not "you did this, but I'll forget about is understanding...Understanding that things were as they were, and are what they are.  The human mind, it seeks, by all cost to justify itself, to make its view or its belief the "right", the "correct."

This tendency, or perhaps the job of the mind while giving us the ability to perform tremendous feats, is also, perhaps the major cause of our downfall.  If we never question our thoughts, never question our beliefs, we can never forgive...Forgiving is not forgetting, it never can be forgetting.  Rather it is the understanding of how things are. 

The old saying about walking a mile in your enemies moccasins speaks to this.  If we can truly do this, we cannot possibly continue to call them our enemy.  They then become our friends, our families, our nations and peoples.  I think this is even more true of ourselves, than it is of others.  There is not human human being alive that has not at one time or another made themselves the enemy, the one at fault, but is this true?  I think not.

Can we (I) look at our painful beliefs and memories, not denying, but challenging them?  Can we know that they are true absolutely beyond any shadow of doubt?  I don't think we can.  When I began to do The Work of Byron Katie, I decided to question first my thoughts and beliefs about my family.  For many years, I've carried anger, angst, hate and fear in regards to the relationship with my family.  Until I was diagnosed with AgCC and they discovered this rare birth defect I lived in a self imposed pit of despair.  I thought I was broken, morally bankrupt, just "not right."

Over years of dysfunction I projected my false beliefs on everyone around me, making them responsible for my turn causing pain and anxiety, misunderstanding and suffering for those around me.  While I've done The Work in this regards, I realize that we have layer upon layer of false ideas and beliefs, thoughts and stories we tell ourselves daily and moment by moment that cause us suffering.

If I were to look at my "track record", I can now, fully understand the reaction of those around me.  After all, we only have to work with, what we know, what we can see and understand.  When I began a road to decompensation in my 20's that went on for decades, I lashed out at everyone and everything around me.  Until recent times, I could not understand that I was/am not my thoughts.  Have you yourself, ever stopped to question this yourself.  If I/you were our thoughts, then answer this, who is listening to, who is believing and acting upon those thoughts?  

I still carry angst over so, so many of my actions, and yet what choice did I have, believing what I believed/thought?  If I could see no other possibility than what my thinking was telling me, I was in a prison of my own making.  I lashed out at my parents, my brother, and anyone that wasn't me, because I could not simply understand what was going on.  I said things to my own mother that I carried deep shame over, things no mother should ever hear their own son say.  I hated myself for this for many years.  While still taking responsibility for all my own actions, what choice did I have?

Now, I could attempt to justify myself and pretend that my actions don't "ultimately matter," (whatever the hell that means, but knowing what I know now, about myself, I have been able to go back in time, in memory, examining the reality of those around me, family, friends, etc...they had no choice either.  They simple had to, must have reacted in the way they did.  I have been able, since, to put myself in their own shoes, looking out through their own eyes, and I see the truth of it.

Where once, I saw uncaring, abandoning, cruel, mean and arrogance, I see only love.  I clearly remember, in light of my parents not really understanding the depth of my birth defect and disability (there was no way they could have, it is only in light of modern science and the advent of the MRI that we now understand AgCC), these two wonderful peoples, sacrificed much of their life, giving time, money they didn't have, devoting all their attention to me, my comfort, my growth, my adjustment.  Not only can I not find fault with them...I look back today, and for the most part see them as a shining example of selflessness, one today that I attempt to emulate.

I don't have the opportunity to share any of this with them now, and perhaps this is as it should be.  It was made clear years ago, after my repeated attempts at trying, that they'd given up on any hope of a normal relationship with me...again, I could be wrong about this too, but it is my meager understanding of the situation.
Stewy and Brian, My Alter Ego!

I can't even describe the appreciation and love I have for them, since I questioned my thinking, about myself, them, and the world around me.  I know if they could for a single moment walk in my shoes (they tried for many years), see through my eyes today, they might be proud of how far I've come.  It just pains me, the years of unnecessary pain I inflicted upon them...more of The Work to be done I suppose.

I understand, I understand that mom and pop were perfectly themselves, lived, responded, reacted and communicated, just as they should have given what they had to work with...and I feel nothing but pride and love for them.

For those of you that actually have the opportunity to question your painful beliefs surrounding family and loved ones, and perhaps then have the ability to share your life with that before its too won't be sorry.
~Just Joe

Houston, Do You Read Me?

I know that I probably shouldn't really expect anything, I just wonder if anybody  reads what I write on my blog?  Some might call that fishing for compliments, and well let them think that, because that's not where I'm coming from.

Along with profound changes in my life has come a new inner awareness, a new sense of self.  Perhaps "new" isn't accurate, I mean or more clearly and cleanly defined sense.  The "voice" I spoke of, in another post.  Even in light of everything that has happened, my diagnoses, my beginning and furtherance of mental, emotional and spiritual growth, I have my doubts.

For most of my life, no, all of it, I have been, and likely will remain somewhat socially and emotionally disconnected to the world "out there."  It can be terribly frustrating, to not only lack the language, but the ability to share with others the ups and downs of my "internal world."  No matter what emotional, mental, and spiritual work I engage in, I seem to always have the same stories, the same nagging beliefs that would challenge me...would assert that they are true with all evidence to the contrary.

I know quite a few people, but I can't say that I'm really close with anybody.  Along with my AgCC comes a lot of difficulty with social situations.  Don't get me wrong, I can fake it.  People, at least at first glance see me just like anyone else...for a time.  Spend any time with me, and you'll see though that I can be quirky, sometimes inappropriate, by all appearances not tuned into what's really going on around me.  While I've come to (somewhat) comfortably accept this about myself there have been few in my life that have come to know this side of me, and stick around...and it gets lonely.

I tend to become even more socially isolating, in anticipation that people will not understand me, will treat me differently.  I've come to accept that a major factor in my not finding a romantic partner is the arrogance and judgement from many of my peers at not having a "J.O.B." etc...  If you can imagine the type of social problems that I demonstrate on this level, try transplanting that to work or romance.

I'm now 49 years old, almost 50...I don't expect miraculous changes...although I've had my share of seemingly miraculous.  But we work with what we have to work with.  Pretending to, (or other people insisting or pretending that) I can do something I can't, well, its insane.

I don't really go out to clubs or bars anymore, I used to.  But it would look like this:  Me, this isolated person in the prison of his own mind amongst my peers...I'd almost literally sit in a corner and drink myself to oblivion thinking, I don't know, either this would make me more "social" (it didn't) or it would numb me to the pain fear and confusion of putting myself in the situation in the first place (which didn't work either.)

While it may be "TMI" or too much information, I frankly don't give a damn anymore, but translate this into the GLBT community in which  I am a part.  So long as I remember, as far back as I can recall, I've never had an attraction to the opposite sex.  Whether its nature or nurture, both or neither, I don't give a rat's ass.  People should be accepted and respected for who they know themselves to be, it is not something that I chose, nor something that I can change.

You would think, in light of this, and in light of all the social stigma and hate thrown on them by sometimes well meaning but ignorant religious (and other) people, that the GLBT community wouldn't be shallow, or judgmental.  I imagine, somehow, that it should make us less so, and more accepting of others.  Well, again, imagination is far from reality.  Some of the worst, most shallow, judgmental treatment I've ever gotten were from my own peers in this regard.

I've considered that this might be resultant of how we are/were treated, hand in hand with the self hatred many of us have fostered, if not on a conscious level, perhaps still so in the subconscious.  Yet, this is only part of it.  I find all human beings, including myself, profoundly shallow, profoundly judgmental.  It goes back, once again to the idea that we might have pain in our lives, but suffering is optional...What I mean is this, people always insist, internally, in their thoughts and emotions that things should't be other than they are.  We don't very often fall in love with someone when we think we do, rather we fall in love with our story of that person, who we want them to be, and not who they are.  Then, as intimacy rises in the relationship, and we begin to see an other for who they really are, we say "they've changed."  But I don't think this is true at is reality, catching up with the story we tell ourselves about the person.

While I certainly don't go about in life (anymore) "whoa is me, poor me", I do recognize my seeming "position" in life, and I try not to ponder it all too long (else I start writing posts like this one.)  Yet, I can't ignore reality...I'm very alone...and perhaps lonely.  How much of my self believed story is wrapped up in "lonely" I'm not quite sure, its still a very painful place to look at for me.

I almost wish I wasn't as good at "faking it, till I make it."  I can come off to people relatively "normal" for a time (whatever normal is, I don't have a clue), yet the moment they notice what is off,  or simply different about me they invariably distance themselves.  While I have come to accept this, I hate it, to be honest.  I wish there were more like my friend "T" who can take the entire package, as it were, and accept and embrace it without judgement.  Again, maybe I'm really asking too much of members of the  human race...I don't know.
~Just Joe

Friday, February 24, 2012

I Am Not My Thoughts

Frustration with the Medical Community

So, a few years ago, in light of my AgCC diagnoses, I'd gotten my medical provider to contract out for me to have an extensive neuropsychological neuropsychiatric study done.  After being given the extensive run around up to a full year afterwards I have obtained a copy for my own records.  I've come to find out (sort of always knew) that this study/report was largely ignored, that not one of the recommendations made by the doctor performing the study was acted upon.

I cannot know for certain, but I imagine this is because they simply don't want to spend the time nor the money necessary to carry out the various recommendations.  If I myself had this information in hand a year ago, I would have insisted and pushed for them.  Well, they'd better watch out (I say in half jest) because I'm about to.

In light of what I know about myself, and about our propensity to believe our own stories, I don't know that I can put the blame solely on the provider.  Yet, one thinks (there's the story again) that "they should know better", that "they should have acted on this without haste..."  Apparently not ROFLMAO.  Furthermore, with various and sundry changes that I've gone through, and continue to go through, while a good deal of this study will remain constant throughout my life, I know, all too well that much of it may not (really does not) apply any more

Katie mentions that when we have an overwhelmingly negative emotion, that there is always a thought, a belief behind it.  When I dive into this one, there is this (not so) wonderful soup of self loathing, and doubt, self blame and criticism that I am all too familiar with.  She says to stay with the feeling, not trying to analyze it per say, but to give it a voice.

Its almost humorous, to me, that one of those stories that I believe sometimes is that "I've done all the work there is to be done on me, those feelings can't possibly have a voice, they are just there because I'm broken."  What a load of horse sh*t! :-)  I'm beginning to understand that these mistaken beliefs pile up upon and feed upon each other, back and forth.  What comes to mind is the first "step" in the 12 step ideology, admitting that one has a problem.  

I often carry the odd belief that if I have any problems, it is because I am broken in some way, imperfect, and that that can't be!  But then I have to ask myself "can't it?" Why can't it be? Certainly if none of us had perceived or actual weaknesses, in my mind, we'd have no reason to even be here (on earth, alive, in this "school of Life.")

Part of me considers that I should have known better.  I mean, when I finally got my hands on this report, sat down in the pick up and started to read it, I could hear my own thoughts: "that's it, see, you're/I'm broken", "I'll never amount to anything", "those bastards should have helped me and reacted and responded to every letter in the report, and on, and on.  But, really, there is no truth in any of this.  They reacted just they way they did, and I reacted just they way  I did...end of story.

The reason that I want to be so free and clear and forward with these thoughts, beliefs and such is because I have observed that it doesn't matter who we are talking about, we all recycle the same sh*t, in one form or another.  There are only so many self demeaning, self deprecating thoughts, rehashed, with new clothes on them, recycled.

As for being broken, well, I just loved the allegory someone shared with me yesterday.  Its as if, I was born without an arm/arms, and all my life people were telling me "yes, YES, you CAN pick up that cup of coffee, if you just try hard enough.  (never mind they don't see or notice you don't have any arms.)  Who the hell would call themselves disabled, if they've never known anything but the reality in which they live.  Perhaps other abled, different, I cannot do what you do, or maybe I can, just not as well...but...this is the way of it. How is there a disability there?

I'd LOVE ANYBODY to tell the mighty Bobby Martin from Dayton Ohio that he is disabled.  And then there is Tony Melendez, born without arms, who played guitar for Pope John Paul: 

These men, they are my heroes, not because of what they can't do, but because of who they are, the fullness with which they embrace life, in the face of others who tell them they cannot.

My thoughts often have me be the victim.  Admittedly in can be difficult when one's difference cannot be seen when it is "inside", and others seem to judge you according to there own standard.  I tell myself I'd be better of if I were like Tony...but would I?  I don't believe that.  On the one hand, my thoughts would have my "disability" recognized (whatever that  really means) by others, while on the other hand they hem and haw about not being treated equally.  What a joke, a painful, self-inflicted poison.

I cannot play football without legs, nor the guitar with my feet, and I have yet to discover, or uncover within myself that within which and as which I excel....Bring it on! :-)

~Just Joe

“All of creation is conspiring to shower us with blessings. Life is crazily in love with us-brazenly and innocently in love with us. The universe always gives us exactly what we need, exactly when we need it. The winds and the tides are on our side, forever and ever, amen. The fire and the rain are scheaming to steal our impossible pain. The sun and the moon and the stars remember our real names, and our ancestors pray for us while we’re dreaming. We have guardian angels and thousands of teachers… provocateurs with designs to unleash us… helpers and saviors we can’t even imagine… brothers and sisters who want us to blossom. Thanks to them, from whom the blissful blessings flow, WE ARE WAKING UP.”
~Rob Brezsney

Wednesday, February 22, 2012

Who Am I?

Probably the ultimate question.  I was intrigued this morning, to have an example directly out of the wisdom knowledge of the ancients (of India) displayed before me this morning.

In the Ribhu Gita (the Song of the Sage Ribhu), Skanda, the son of Siva describes this very thing, who, or what is this "I" that we refer to: "I am coming", "I am going", "you are____", "I am ____" etc...

One of the examples he gives of how to determine the nature of the I is described by telling us to ask ourselves "The I that I (yea, I know redundant) refer to when we point to ourselves and say "me" or "I", what is this?  Is it in truth the body or "in" the body?  If so what does this body consist of?"  When you sleep, and dream the I is still present, in fact, it is independent of the physical body.  So much so that the content of our dreams is generated and maintained by this sense of I.  But what of the body then, when we sleep, where "is" the body?  Is the body simply another product of our "dreams" as is the body we seem to inhabit when we sleep and dream? 

What of the body, and what of the I that dreams when we are in deep dreamless sleep?  Can we then say, I am the body, or even I am this thing, this "I" that we refer to? Furthermore, when we awaken from our dreams and our deep sleep: "Where was I the dreamer? Where am I now, the "awake person?"   
His Majesty Boris!
I had the most (personally) profound example of this very phenomenon this morning.  As I lay in bed, I dreamed of one of my dogs Boris, a beautiful and sweet Rat Terrier.  For some reason I dreamed I was at Mardi Gras (go figure) and I was in my car, and realized in a panic that I had "tied Boris up somewhere and couldn't remember where."  I could feel my heart sink, I could feel dread in the pit of my stomach...and then, all of the sudden light from the rising sun peaked through my eyelids and in that same instant I woke up from the dream.  Low and behold, my sweet terrier was under the covers, curled up and pressed against me wagging his tail.

In this very instant, I understood what Skanda and Ribhu spoke of.  Even so, as the joy of my little dog thwapping his tail under the covers (I imagine somehow, he knew I thought I'd lost him) my sense of self, or little self vanished for the moment.  Was I the body, was I the dreamer, or the dream?  I intuited, "felt/remembered" the deep sleep state, where there was not even Just Joe, no Justa Guy.  If the small sense of I can be so transient, changeable and diminished through sleep and wakefulness, just how real is it anyhow?  For me this was not some abstract intellectual excersize, rather the knowing of it was so stark, so wordless, breathtaking and profound.  For those few moments, experiencing a freedom that was seemingly lost.

Could it be the I, the true I am that in which both waking, dreaming and sleeping arise?  The sense of small I that we give all importance to, for me, is no more than a wave cresting on top of the Ocean, at once a wall of water, and again resolved into the Sea.  I think I am the wave, but I am really the Sea.

Even as I sit here and write this blog entry, I know that I do this knowledge tremendous injustice.  The One who realizes these things, does not think them, cannot remember itself, for it alone Is.  Those of us that practice one form or another of deep meditation began to "experience" this regularly.  The very moment we have some profound deeping and we "realize" or "remember" it, it is gone, false, now a product of our intellect, a thing.  But a thing is no different than I dream.

This begs the question, are we always dreaming?  Are we always creating or moulding our reality according to our thoughts, emotions and desires?  It seems that this is so.

Just Joe

Tuesday, February 21, 2012

One Day

Sometimes I lay under the moon and thank God I'm breathing then I pray don't take me soon cause I am here for a reason

Sometimes in my tears I drown but I never let it get me down
so when negativity surrounds I know some day it'll all turn around because all my life I've been waiting for I've been praying for for the people to say that we don't wanna fight no more there'll be no more wars and our children will play
one day

It's not about win or lose cause we all lose when they feed on the souls of the innocent blood drenched pavement keep on moving though the waters stay raging in this maze you can lose your way (your way) it might drive you crazy but don't let it faze you no way (no way) sometimes in my tears I drown but I never let it get me down

So when negativity surrounds I know some day it'll all turn around because all my life I've been waiting for I've been praying for for the people to say that we don't wanna fight no more there'll be no more wars and our children will play one day

One day this all will change treat people the same stop with the violence down with the hate
one day we'll all be free and proud to be under the same sun singing songs of freedom like

One day All my life I've been waiting for I've been praying for for the people to say
that we don't wanna fight no more there'll be no more wars and our children will play one day

Split Brain Research

Some of you might find this interesting.  While the experience of being born with this condition, as I was myself is very different, there are still very strong similarities.  Because this individual was born with a CC (Corpus Collosum), he experienced normal development in all of the expected areas.

Those of us born with AgCC have learned from an early age to compensate in many areas, while I actually can perform some of the tasks that the gentleman in this video finds difficult or impossible.  Those of us born with the condition, can demonstrate difficulty with coordination, "higher" or left brain reasoning skills (inference), and impared social skills (we often misinterpret "social cues".)   Around the age of 12 the CC of "normal children" begins to speed up, become more efficient.  This necessary part of human development helps the individual compare his or her internal experience with that which they are experiencing in the "outside world," hence the beginning of more complicated social interaction.  Those of us born with AgCC often show marked lack of development in this area.

Many studies are also revealing this may be because (and in my case, after neuropsychiatric studies) shows that is is occuring when we try to access these fine social cues.  You may not realize it, but spoken language is a very important but incomplete picture of how humans communicate.  Without reference of what is being spoken, most would be lost in an average conversation.   Studies indicate that AgCC individuals can demonstrate great difficulty understanding gestures and more particularly facial expressions that "fill in" or give the "context" that the communication is conveying.

Personally, I am beginning to learn how to deal with this, by asking myself (telling myself in each circumstance) that it is likely if I don't pay attention to other details that I will misinterpret what I am hearing/seeing/experiencing.  At the very least, this attitude has begun to take the pressure off, and I don't feel that I need to respond immediately.  I can reserve even just a few seconds, which may or may not even be noticable by the person or persons I'm communicating with, and look for other clues that might give me more "context."

The research on split brain has actually gone on for some time now, at least as long as they have been removing the CC to stop severe seizure activity, but as I mentioned above, while we share much in common with these peoples, our experience is still quite different.

I have always had the internal experience that I was "two people."  I don't mean this in a Sybil Dorset way, describing dissociative identity disorder (what used to be called "split personality.")  Rather, the way I can describe it is that I am two people, fully conscious of each other, experiencing the world differently, but "joined at the back" like a conjoined twin.  Just like in a conjoined twin, one will become dominant, and the other more passive.  In my personal case I observe that I am largely in my right hemisphere, I see the "big picture" have incredible long term memory or wholistic memory, feeling, emotion, but don't function well in areas where I'm called upon to use inference, logic, etc.

In recent years, especially after having received a diagnoses of AgCC, I no longer look at this part of my life in horror, but an oddity, that I am perfectly me, even if very different.  I've come to understand, and accept (even embrace) that I experience the world differently from the "average" person.  As in an early post where I talk about The Great Work, I can acknowledge now, that this small part of who I think I am need not hold me back, hold me down, that I am so much more than I can imagine or think, and that this is true of all of us.  We all stem from, are rooted in the Great Mystery that is God/Truth/Reality.  All we need do is begin to peel away the layers of the onion, to find that ultimately there is nothing underneath. (If you keep peeling the onion, you just end up with more onion! LOL)  We see and know nothing there, simply because God, Truth, Reality, cannot be called a thing, it just Is...Embracing what Is, we can begin to experience the freedom in our lives that was always there for us, but remained unseen, only for layers of an onion.

~Just Joe

The Great Work

Currently, I am finding my life full of such mystery, such wonder.  When I think I know who I am the Universe pulls the rug out from under my feet (who's feet?) and reveals to me that we only ever, as our "little selves" see part of the picture.  As St Paul (Saul of Tarsus) says: "For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known."  In the Western Mystery Traditions this mirror is known as The Great Work, or Magnum Opus.

There are different aspects to this Work.  Just like the picture we often see and believe things of ourselves that are our own delusions.  I'm not talking about paranoid delusions, nor a "break with reality", in fact what I'm referring to, is that we often have created our own reality and overlayed it upon what really Is.

On one level, the Great Work consists of working within this illusion/delusion, improving, tweaking, changing, developing it, etc...taking it at face value as a given in our day to day life and making the best of it.  One might call this self development.  Another altogether different aspect of the Work is the stripping away of the illusion of our relative existence.  This is not a denial of our little selves, but a recognition that everything we think and believe that we are, rests upon & has its support upon something far more profound, primal to, behind, before, and outside of who and what we think we are.  This has been termed the Beatific Vision, the Conversation of the Holy Guardian Angel, Jyana (pronounced gyana) in India, and many different names in many different cultures.

In short, ask yourself...if you can remember prior to the inculcation of facts and beliefs, politics, religions, maths and sciences, when you were a very very young child, "Who Am I?"  For example, long before my world started to grow, long before my "disability", long before I understood that there was a "great big world out there" of my minds creation, I can remember, running through the grass and trees and hillsides of Northern New Jersey, feeling the wind on my face, the earth under my feet, and Understanding "I do not know what any of this is."  This wasn't a problem either.  Quite to the contrary, you might say I was drunk with the Mystery of it all.  Not having a lable to overlay upon my experience I was, you were (and we still are, if we just look) open to it, fully,  at all times, in all places.

I'm reminded of the great guru or teacher of the Sikhs, Baba Nanak.  He spoke thus: "there are no Hindus or Muslims, Buddhists, Jains, or anything else, there is the parenthood of God and the brotherhood of mankind."  Well, Nanak traveled by foot all over India, China, and the Middle East...and he visited Mecca, the holy place of Islam.  Nanak fell asleep with his feet facing the Kaba, the holy place Muslims believe to be the house of God, built by Adam.  Some one, seeing this wakes Nanak in anger, telling him how disrespectful he was for doing thus.  Nanak answered, in innocent embarrasment and wisdom "my dear brother, please then, pick up my feet and point them in the direction that God is not."

All religion contains within it the seed of truth, as well as the distortions and the "funhouse mirrors" that we place in front of ourSelves.  If we can drop these self imposed limitations, we realize that God/Truth/Reality is everywhere to be found "inside" us, "outside" us, and all around.  There is not any one thing that can possibly hide this Truth, excepting our own ignorance.

One of the greatest expressions of The Great Work I've experienced in a long time has come, not from a religion, not from a well established Tradition, but in the Self discovery of a once desperate suicidally depressed woman name Byron Katie.  After years of self imposed limitation, as she describes it, she "woke up to reality."  The reason I find The Work by Byron Katie so attractive, is that it/she assumes nothing.  She doesn't start from any observable religion or tradition, yet does not accept or reject anything outright, but she simple describes a process of self inquiry, consisting of four questions and a "turn-around."

She learned that we suffer, when we believe our own (unquestioned) thoughts, the stories we tell of/to ourselves, perhaps even hundreds or thousands of times in a day.  After a while she understood that it was not useful or likely even successful to try to "teach" or overlay her understanding on others.  Rather than do this she suggests the four questions:

  1. Is it True?
  2. Can I absolutely know that it is true?
  3. How do you react, what happens, when I believe that thought?
  4. Who would I be without that thought?

The turnaround is a way of experiencing the opposite of the thought or story we are telling ourselves.
I wouldn't and couldn't do The Work by Byron Katie (Katie, as she is usually called) justice by sitting here and trying to intellectually tell you how to "do it."  Hers is not a process of self-talk, persay, rather one of deep self inquiry and introspection.  One needn't use the questions to come up with profound quippy statements that further inforce our delusions.  The Work happens when we sit with the question, allow it to do its own work in us, in the Silent Place.  From that place, the most sobering, delicious  and liberating insights make themselves known to us, wiping away our delusions.

Hers is just one way to experience the freedom from slavery to our own stories, but it is an exceedingly effective one.  It is an expression of the Great Work that I have found personally to be more useful and revealing, or unvailing of my true nature, than years of psychology, "self-help", meditation and the like.  While all of these things still offer great support and insight into my "condition", none has helped so instantly as The Work as she describes it.  Don't believe my word for it...find out for yourself!

~Peace Out,

~Just Joe

Sunday, February 19, 2012

Who Am I?

For all thoughts the source is the 'I' thought. The mind will merge only by Self-enquiry 'Who am I?' The thought 'Who am l?' will destroy all other thoughts and finally kill itself also. If other thoughts arise, without trying to complete them, one must enquire to whom did this thought arise. What does it matter how many thoughts arise? As each thought arises one must be watchful and ask to whom is this thought occurring. The answer will be 'to me'. If you enquire 'Who am I?' the mind will return to its source (or where it issued from). The thought which arose will also submerge. As you practise like this more and more, the power of the mind to remain as its source is increased.
 ~Sri Bhagavan Ramana Maharishi

Saturday, February 18, 2012

Right Brain vs Left Brain

OK, so I don't know, and I'm not saying this really is science, but I find it intriguing nonetheless.  I can only see her spinning clockwise?  Anybody else?

THE Right Brain vs Left Brain test ... do you see the dancer turning clockwise or anti-clockwise?

If clockwise, then you use more of the right side of the brain and vice versa.

Most of us would see the dancer turning anti-clockwise though you can try to focus and change the direction; see if you can do it.

uses logic
detail oriented
facts rule
words and language
present and past
math and science
can comprehend
order/pattern perception
knows object name
reality based
forms strategies

uses feeling
"big picture" oriented
imagination rules
symbols and images

present and future
philosophy & religion
can "get it" (i.e. meaning)
spatial perception
knows object function
fantasy based
presents possibilities
risk taking

This above article is from the Herald Sun and can be found at

Should have, Would have, Could have...

How do I know this is true?

I find of late, that I am not alone in this.  I may function a bit differently, but what is true for me is true generally of all people.  Thousands of times a day (perhaps) whether aware of it or not, our brains have the "job" of interpreting new information.  The major way it does this is by comparing the new data to all its previous "experience."  You might call this a judgement call.

Driving down the busy 405 freeway, and someone cuts me off...I think (and sometimes my shout in my car) "they shouldn't have done that", "they're not 'supposed' to cut me off," "they should be better drivers."  It begs the question though, is this true? Would have, could have, should have, ad infinitum... "She shouldn't leave the cap off the toothpaste," "he shouldn't leave the seat up"...on and on and on.

I suppose that we continue to make changes in our lives, we continue to make improvements, comforts, what works for us, fine, but we make ourselves miserable by not minding our own business.  I love what Byron Katie says, "there's my business, your business, and God's business."  All too often we forget this and spend our time in someone elses business, or in God's.  Katie likens what is called "God" to reality, simply put, the way things are.

I suppose, disability or not, I'm not really all that different than others, especially in this regard.  Michael J. Fox is also known to have said: “I am careful not to confuse excellence with perfection. Excellence, I can reachfor; perfection is god’s business.”  I really love this. We can all strive for excellence, regardless of who we are.  

Justa Guy, well he can excel at being himself, you can excel at being yourself.  What use is it to believe someone should be other than they are, other than the way they "show up?"

I've often cited the arrogance of "praying to God" that my football team would win, etc...Without  doubt I know that God/Truth/Reality is intimately involved in our lives, none whatsoever.  But along with this, I also know that God Is perfection, not my idea of perfection.  Now, if I were going to pray something, I'd pray that I'd be the best football player (if that is what I was) that I could be.

I have come to the understanding that (metaphorically) our lives are a ship/boat traversing the Seas of Life.  No matter what we do,  this Ocean, this Sea of Life, has its own currents, eddies, waves, the Wind will blow where it will.  

Notwithstanding, our ship has a rudder, which we can continually (actually we do always, whether we acknowledge it or not) steer on the Ocean and through the Winds and Currents that seem to surround and direct us.  We can, sometimes avoid rocks, we can, for the most part direct our ship within the constrains of the world around us.  We can even discover the Lost Island of Jewels, the Lost Paradise within.  

If we insist that our ship go west, but the Wind and Current of Life take us east, what is the sense in jumping up and down with a tantrum that it not "go our way?"  Of course some might call this naive, simplistic, powerless, but that isn't my experience at all.  On the contrary, I spent most of my adult life fighting the Wind and the Current, insisting that "I must not even have a rudder at all", in the face of all evidence to the contrary.  And when one learns how to begin to operate their rudder for the first time, one realizes that it had been whipping back and forth in the waves out of control, simply and only because I believed it so, but even that believing was operating the rudder, and steering me into further misery and suffering.

Imagine the excitement, for the first time, with your hand on the rudder, pushing it this way, and you go that way, pulling it that way to go this.  There is tremendous joy, peace, acknowledgement of responsibility, and that for which I am not responsible nor in control over.  The Waves, the Current, the Wind...well...that's God's business, but what I choose to do with it is my own.

Wednesday, February 15, 2012

Hope Springs Eternal

I'm a 49 year old man, yet I feel like  newborn child.  The diagnoses and recognition of my AgCC, while only the beginning, has opened doors for me that I'd always hoped, but never imagined possible.  I'm not only learning about resources with this, but communicating with parents of an AgCC/ACC child.  I can't stop thinking how blessed they are, to have an early diagnoses.  While I don't dwell on what "could have been", I wonder how it might have been different, had I been born today with this diagnoses.

We often second guess life, thinking "this should have happened to me" or "this shouldn't" etc...but we often never stop to think of the implication of that belief.  For example...

I have been dealing with developmental/behavioral/cognitive issues all my life.  The first diagnoses was ADD (well LONG before they called it that, in my childhood they called it "hyperactivity disorder", and as I matured, my problems manifested in all sort of ways...Focus, sense of self, personal responsibility, social communication.  One after another I had diagnoses after diagnoses (misdiagnoses) that never offered any long term help.  This is, to be fair, largely because, even until recent weeks and months, I've lacked an appropriate and accurate "internal language" to relate to doctors what was going on.

Back to my example:

I came to live in SoCal 4 years ago, because I was suffering with Hepatitis C, and was just getting sicker and sicker.  A new friend, who turns out is more sister than friend invited me here, to help get me well.  In the beginning of all my medical tests my neurologist performed a brain and brainstem scan, and I was diagnosed with AgCC.  Everything changed.

I think I grew up in a family largely in denial about mental, emotional, behavioral and social problems, that believed "there was no such thing as mental illness, just moral weakness." (A very common belief for the time I grew up in.) I'd been estranged from them for so long, I don't really know if this is what they thought, just what I remember and believe.

I have walked through life thinking I was bad, wrong, weak, not as good as everyone else, I felt broken and not able to communicate but never understood why (now I do thank God.)  Within minutes of reading the diagnoses, years of shame, guilt, and self hatred began to wither away.  In its place I now know that I am normal, my normal.  There are things I can do extremely well, and there are things I can improve but will always lag behind...and  I love me, I accept me, God made me perfect in every way.

I was very very sick with Hep C (now I am virus free and healthy through chemo and the love and prayers of friends.)  Had I not been, had it "shouldn't have happened to me", I'd never have come to SoCal, never gotten the high quality medical treatment I needed, and never  would ever have known why I am who and what I am.  I am so grateful.  Pain may be a given, but suffering is optional.

Just Joe