Monday, December 15, 2014

Diagnoses...for me...was waking from a nightmare

I often think of what it must be like for other adult ACCers who have not been yet diagnosed with the condition...I remember how it was for me.

While ACC like ASD is a spectrum, there are many (MANY) of us out there, suffering, struggling through life, without the benefit of knowledge of our condition.  I reflect on the self-imposed shame, guilt and self-hatred that was a major part of my psyche for most all of my life...

waking from the nightmare
It is estimated that 1 in every 4,000 births has some sort of collosul disorder.  Going undiagnosed, then, like me they spend perhaps their entire lives, misdirected, misguiding, misdiagnosed and not able to live to their full potential.  Many ending up in mental hospitals, prisons, or worse even dead, all unnecessarily.

When I was a child, I know they were aware of my brain anomaly, but even neurologists were quite ignorant of ACC and its implications.  Today, there is more knowledge of the condition, but it is still not routinely diagnosed.  As a child, doctors would say stupid sh*+ like "oh, he doesn't need that little piece of his brain, he'll do just fine!" and other such ignorant things.  Today, we know this is simply not true.

I mean, think of this rationally,ok?  As far as the human organism goes (not addressing soul or spirit) we are our brains.  At the very least, the brain is the receiver, transmitter, and processor of information with and in the "outside world."  How could a computer work, if you took out a RAM stick, or had a faulty hard drive, worse yet a faulty processor? It would not work normally, if at all, right?

By the time I was in my mid twenties I had already begun a hopeless journey through the mental "health" system, being drugged by countless medications, that, God know WHAT did to me, and in many cases creating problems and exacerbating any comorbid conditions I did have.  I had learned to hate and distrust myself, feeling that I was inherently broken, inherently imperfect (again, other than a spiritual sense, I'm speaking as brain/personality.)  I learned to hate myself, to treat myself with utter contempt, becoming my own worst critic and final judge.

Much of my life was, "couch hopping", depending on the good will of others to "take care of me."  When I was an adolescent, I was not, like my peers, thinking about career, thinking about how I would contribute to the world, no...I was thinking "who will take care of me?"   I felt and believed myself to be entirely dis-empowered, unable to meet my own needs without the constant concern and care of others.
partially exposed corpus callosum with it's 200,000,000 fibers

And there were and are SO many well meaning people in my life, SO many caring individuals, that throughout this time reached out and tried to help.  Yet, I would "wear out my welcome," as others realized I saw myself totally dependent, and unable to stand for myself.  Today, post diagnoses, I wish I could go back throughout my life, and thank all the many people who tried to help and guide me, some of which today, I cannot even now remember...yet this is impossible, so I write this blog.

When I was diagnosed with cACC, and shortly after with ASD, it was not like some might imagine, that the label took away my power, that I became dependent upon, the opposite was true.  I was overwhelmed with the positive knowledge of who I was.  I was (in my eyes) no longer broken, I was no longer the character flawed misfit that my father tried to convince me that I was, and that I believed I was.  When I learned what it was that I was not, when I discovered what I could not do, it rather freed me entirely.  I no longer spent my life trying to do what I could not.  I began to focus on and discover my skills, my strengths and to lean solely upon them.  Where I found ability but weakness, I began to learn how to use my strengths to bolster and improve upon my weakness, but I no longer hated nor judged myself for that which I was not, for that which I could not, and will not ever be able to do.

I remember leaving the neurologist's office in 2008.  I immediately got on the payphone at Kaiser with my best friend.  She asked me "how do you feel about all this?"  I remember being SO overwhelmed with positive and negative feelings that I said "I just don't know yet."  She told me that this was ok, "how could I?"

Alongside the positives of diagnoses, and waking up from this horrible nightmare of life, came truckloads of bitterness and resentment for not having been understood and diagnosed as a child.  Unrest in my soul for the many years of my life "lost" because I didn't know about my cACC.  I still struggle daily, I pray, I do good works, in the hopes of releasing more of this angst.

I have learned since that time, that today many with DCCs are diagnosed at an early age, even in utero.  This has given me tremendous comfort...No, I cannot change my history, my past, but knowing that it is different for children today, and knowing that I can blog, I can reach out, I can share my experience with others, well, it fills my soul with tremendous love, tremendous healing and hope for others like me in the future.

The Corpus Callosum Research Project @ Caltech
Next month, I will be partaking in the Corpus Callosum Research Project led by Dr Lynn Paul.  This research is aimed at more closely identifying the deficits associated with being acollosul.   And, while it is largely for me an exercise in self discovery, it is more so filled with a lot of hope that I am helping others with my condition in the is a great relief for me.  Stay tuned, because I am sure to blog freely about my three day participation in the study. I will be scanned again, and studied, and interviewed...and honestly part of me feels a HUGE sense of vindication for all my "lost years."

My own parents refuse to acknowledge my cACC even when I have provided them proof, but like I can make up a hole in my brain?  I'm hoping that Dr Paul's research will assist others in reaching out to my family and healing old wounds before it is too late for my elderly parents.  Hopefully I'll write more about this in the future!

My gratefulness, my thanks to all my many blog followers, and my continued hopes that my words offer some sort of hope, and instruction, and indication of how good life can become for someone with Agenesis of the Corpus Callosum.

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