Friday, February 24, 2012

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

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