Friday, December 28, 2012

A Day In the Life of....

First let me say, I don't speak for all people with Agenesis Corpus Callosum, at least in the sense of thinking everyone's experience is like mine.  Like Autism Spectrum Disorder, ACC has a huge spectrum of effects, from mild to severely disabling.  

I belong to several groups online of ACC adults (and parents of ACC children) and I have noticed a trend that makes me very sad.  Many adults, like myself continue to socially isolate themselves, because we see how our relationships and friendships, well, they always start out well, then people see us as we are, who we are, and freak, mistreat, condemn, judge.  To be certain, this isn't "all" people (I agree with psychology that the use of "universals", i.e., "all/always/everytime" etc...is a slippery slope) yet I have met enough of "me/us" to know it is generally true.

I won't mention names of people I spoke to about this, that would be betraying trust and privacy...but I will shout out to them this:  It really does not have to be this way...I still largely control who is in my life, I have to, yet I've been able to find people that love me, in spite of, and because of my "strangeness."  I generally (when appropriate) try to "pre-educate" people, and let them know "what they are about to see/experience if they really want to hang around and be my friends/family."  While this doesn't always work, it has opened up a new world for me.

I became expert at burning bridges early on.  My thinking (like many of us) was "that person/family member is going to hurt me (more) so I might as well do what I can to end this in advance before it happened.  I see many of us do the same.  In fact, after my (thank God) failed suicide when I was in my 20s, I am grateful to have listened to my doctors at the time.  You see, I had just been revived, and a "family member" (will not mention him by name, I don't want to add cruelty to my repertoire), literally could be heard on the phone saying "he's just a liar, he's crazy, he wants attention, we want nothing to do with him" (I have a recording of this conversation provided by the hospital, so even with my confabulation issue, I know the truth of this.)

The best thing my doctor said at the time, was to "stay the hell away from "____" and to not keep in touch.  SO much pain involved in this, but I'm glad I did, had I not, I likely would be dead today.

Thing IS, we should not have to go through this.  I have another relative, who's own father treats him exactly the same, saying cruel things such as "you are just like your "_____" (referring to me), you are a psychopathic liar" (and worse things.)  

Most Americans are utterly ignorant of what a developmental disability is, verses a "mental illness."  A DD person can have mental illness sometimes, but they are not in any way the same thing.  Even so,  people are terrified, that "if that can happen to them, it can happen to me" realizing that "who they are" is a far more tenuous balance than they'd like to admit.   So, they bury these things deep, and begin to judge "me" vs. "them."

It is time for the United States to pick up the ball that Ronald Reagan threw into America's gutters.  It is OUR children, brothers, sisters, mothers, fathers, aunts, uncles, cousins, and veterans of "our" wars that he threw into the streets when he systematically closed more than half of the US's mental hospitals and cutting care...and people wonder why the hell we have Columbine, have Colorado, CT and the like?

I turned 50 this year.  With many people 50 is a great turning point.  For me it was astounding.  It is as if all of the sudden "I know who I am, and I am not going to be your doormat."  I have let people trample all over me for decades, and I will not/cannot do this anymore.  Before I moved back to SoCal, I literally spent more than 3 years never leaving my home.  No, I wasn't "agoraphobic" not in the clinical sense, but the fear, pain, rejection and cruelty was more than I could bare. I had groceries delivered, only walked my dog in the park (literally next to my home) and otherwise NEVER left home.

I couldn't/can't do this anymore.  I want to LIVE...and I REFUSE to allow people's ignorance and discomfort to kick me down to the curb any more.  Having said this, I still very closely control who is "in my life."  I have a small handful of peoples, two of which are more "sister" to me, than I had ever been "brother" to my family. They know that, not that I "might" "go off", they know I will eventually be inconsistent/incongruent/ seemingly disconnected from "what is 'really' going on" (in there eyes), and yet, they have/will continue to love me, and be there with/for me despite this.

I do not discount that, people in my past, who didn't know about my congenital brain defects dreamed up all kind of shit about me, because frankly, they simply could not understand why I was the way I was...I GET IT, I really do...but...grow the fuck up (SERIOUSLY!)  Even in the presence of medical diagnoses, MRIs showing both my brain damage at birth as well as strokes I had, they think likely in the birth canal (I was born also with a prolapsed cord around my neck), some of these "individuals" would still call me a liar to my face....and I have no time whatsoever for you in my life.  

I'm also not discounting how horrible I have treated those people in my past...yet G0d@mnit, there is a valid reason.  

If anything, all of this has only kindled the fire within me even moreso.  I will continue to fight for equality, justice, understanding...will continue to fight for the rights of the developmentally, neurologically, and mentally disabled.  We are coming OUT of the shadows that America's ignorance has shoved us in and abandoned us to.  

With the awakening of people in America, to more injustices, such as marriage equality, women's rights, and more I add the rights/privileges/lives of all disabled people in America.  We are taking your shame and handing it back to you. We want nothing of it in our lives.  Not only have/do you cause us suffering, but you haven't a clue (yet) the suffering you have brought on yourselves.

Times are a'changin' and I am so very proud to be a part of it.  I am making a difference (and you can too) in the lives of others.  I am watching parents of children born with my brain defect, well, I am watching them unconditionally love and hold tightly to their children, not rejecting them for who they are.  I am watching them become educated, informed, empowered.

This is not to say that my own family didn't do what they could.  They certainly tried, but not only did they not have my accurate diagnoses (they couldn't have in my day) but were bogged down by the same type of ignorance as most of America...It wasn't my parents "fault" in any way shape or form (on this issue LOL), they were victims too.  

Changes for us started with the ADA, American's with Disabilities Act, and continue even today...I foresee a day of great change, very, very soon, and in the near future.  I pray that it is so.

With all my love,
Gurudasa/Joseph






Saturday, December 22, 2012

Changing Times...

I cannot but begin to deeply reflect on changes in the world regarding Agenesis of the Corpus Callosum.  I heard from several parents of very young ACC and pACC children, how incredibly important and helpful the article in Scientific American Mind really is.

To be clear, my contribution, (I feel) is quite modest, even with the expanded web information about my life and ACC.  I'm not sure but I think there was a half a dozen of us interviewed, and I think they treated the non-science parts, about the actual living with this, wonderfully.  I'm hoping that they will continue to treat and revisit Collusal disorders, developmental and neurological disorders such as Autism, Asperger's and AD(H)D, etc...

Yet, I do know, and quite personally how committed to fear and ignorance so many of older generations are about these types of things.  Admittedly, there are problems in America today, holdovers from Victorian thinking about the mind, the brain, behavior, emotions, mental, emotional, and developmental disorders  neurology, and even "medicine" in general.

In the light of current events in society, I cannot help but think about the murders of those children in CT.  Almost immediately there was all this (incorrect and inappropriate) accusations about the killer (I REFUSE to mention his name, I will NOT give him that) that feed into the kind of fear and ignorance I mention above.

First, for the uninformed, please understand...
Developmental disorders such as Autism Spectrum Disorder, Asperger's and neurological conditions such as pACC and ACC are not "mental illnesses."  

A developmental disorder is "any condition that appears at some stage in a child's development and delays the development of one or more psychological functions, such as language skill. Developmental disorders include psychological and physical disorders, for example autism or dyslexia. Developmental disorders are an impairment in the normal development of motor or cognitive skills that are developed before age 22. They are usually expected to continue indefinitely, and there usually is no cure."

As adverse to developmental disability, "mental illness is a term that describes a broad range of mental and emotional conditions. It also refers to one portion of the broader ADA term mental impairment, and is different from other covered mental impairments such as mental retardation, organic brain damage, and learning disabilities. The term ‘psychiatric disability’ is used when mental illness significantly interferes with the performance of major life activities, such as learning, working and communicating, among others.

Someone can experience a mental illness over many years. The type, intensity and duration of symptoms vary from person to person. They come and go and do not always follow a regular pattern, making it difficult to predict when symptoms and functioning will flare-up, even if treatment recommendations are followed. The symptoms of mental illness often are effectively controlled through medication and/or psychotherapy, and may even go into remission. For some people, the illness continues to cause periodic episodes that require treatment. Consequently, some people with mental illness will need no support, others may need only occasional support, and still others may require more substantial, ongoing support to maintain their productivity."

Clearly we are speaking of entirely different categories of things.  A person with or without a developmental disability can have (or not) mental illness, however a developmental disability is in no way to be confused as the same thing.

This brings me back to CT and the greater problem.  Please understand, I am neither advocating any particular politic I am stating history...; it is undeniable that President Ronald Reagan cut major funding for mental health, many tens of thousands of people with mental illness became the burgeoning homeless population in the United States of America. 

Even today our jails are filled with mentally ill people that could/would have responded to early intervention and treatment.

DON'T EVEN get me started on the state of things for the developmentally and neurologically disabled, I'll have to save that for another time.  And yes, the truth is we do not know all that much about the murderer yet (that we are being told, anyhow...)  Yet it really sparks my ire when people think the solution is "more guns."  What the HELL about screening?  I actually do believe in the Second Amendment, yet many things mentioned in it are clearly either irrelevant, or need to be interpreted and understood according to the current state of the Union.

Even if it were to turn out this adolescent man had a DD, my argument is similar.  By America hiding their collective heads in the sand in shame, over something as normal and natural as neurological, developmental, emotional and mental issues, is a VULGAR slap in the face to 20 murdered children that will never realize what they could have become...by willingly, in many cases, remaining ignorant...it is WE that are at fault, we caused this horror to occur.

The fact is, in both categories, that of mental illness and developmental disorders, we have not only dropped the ball but hidden it in a closet thinking it will just go away.  Well, surprise people, it won't.  Oh, and the NRA (No Responsibility at ALL) wants to blame video games and arm teachers...WTF?

Many of you may not know that when a child becomes 18, whether DD or mentally ill, they are dropped from "the system" and there is little or no follow up or help to get them through life.

In my case, I was 46 years old before doctors discovered the congenital defect in my brain, past strokes and other things...YES, this changed my life...but the FACT IS, they HAD the technology (but not the understanding) to discover this, even when I was an INFANT, yet NOTHING was done.

my brain on MRI
I was having a brain and spinal cord-scan because of an (seemingly) unrelated neuromuscular condition that I have, and it was found (by the Chief of Neurology Kaiser Permenente South Bay California.  Yet, I would STILL have "relatives" who would tell me "I am a psychopath, a liar", and I am "making it up to get attention."  Hmmmm how the H E double hockey sticks do you "make up" an MRI, that shows I have a missing part of the brain, that I had strokes, that I have other malformations?

As T has said on her blog and I agree, this is "not even on my plate anymore."  If individuals choose to be ignorant, that only empowers me more to educated the masses.  I have been working with two editors and eventually will publish a book about living with Agenesis Corpus Callosum.   No guilt, no shame...only joy in being able to help others like myself.

I foresee a day when the next evolution in mankind's morality includes the acceptance of our neurological brain differences, the "different people" in society....begs the question, who isn't "different?"

I was going to further develop this thread, but am going to leave it open for comments (I think I've done that right, I have trouble with this new Blogger interface :(((((  )   Off now, to my big wonderful Life!

May all beings be happy
May all being be free from suffering
Peace p e a c e    p   e   a   c   e  

_/\__  Ik ong kar satgur prasad, One Creator of creation known by Grace of the True Guru (God),

Guru's Daas (Joseph)













Thursday, December 20, 2012

WOWZER!

Hi friends, 
I'm so sorry it has been so long since I've posted, but my life has taken so many turns and I'm involved in spending most of my time with a loved one who needs me with her (you know who you are :')  ) 

An article in Scientific American Mind magazine about Agenesis Corpus Callosum mentions me briefly, with a short blurb that I've written even on the blog here, perhaps the most important one for me....as well as several paragraphs about my life, living with this disorder online at Sci Amer Mind's web magazine, and you can find that here: http://blogs.scientificamerican.com/observations/2012/12/20/patients-reflect-on-life-with-a-common-brain-malformation/

I have also posted about this on Facebook for those of you who have access to my Facebook page.

They also linked to my (this) blog directly through the online portion.  With that I wanted to announce that I will again begin to regularly post on A Boy With a Whole in His Head.  Thanks to all of you who are an enduring supporting part of my life I love you.