Wednesday, January 21, 2015

Lab Rat for the Greater Good...

There is important research going on surrounding Agenesis of the Corpus Callosum and I have  just finished a three day study with Drs Warren Brown and Lynn Paul Kerling.  I want to reach out and thank them especially, as well as Ryan Mangum (the research assistant I got to know the most) and the other fine ladies and gentlemen that administered the testing and made my time there most enlightening, most fulfilling.

I apologize for not remembering all of your names, but I have difficulty with names, but you are all equally important.

First, I would like to start off on a purely personal note, then I'll talk more about the research...:

I'm 52 years old, and I spent the greater portion of my life not knowing I had Agenesis of the Corpus Callosum.  Yet I always knew I was different, the way I thought, felt, and communicated unlike those around me.

Not knowing this was because of my ACC I lead a life of dysfunction, self-blame and hatred.  My parents accusing me of "faking it" and "lying", telling me there is "nothing wrong with me" "I fabricated it all in my head." (Fabricated a hole in my head, that is a good one SMDH.)

When I was diagnosed it was like a light turned on inside of me.  All the misplaced hate, rage, misunderstanding, anxiety, all began crumbling down, melting like an iceberg in the sun of knowledge.

Today, I still deal with people that tell me "it's all in my head" sadly these people are "doctors."  Doctors who tell parents either "(s)he didn't need that 'little bit of tissue' in the brain" "it's of no consequence" or "your child will grow up to be profoundly intellectually disabled, will never walk, never talk."  These doctors are ignorant uneducated fools, harming patients by there uneducated and misguided pronouncements.

Hence where this research comes in...

The research piloted by Dr Warren Brown director of the Travis Research Institute is designed around demonstrating the core cognitive and psychosocial deficits common to all individuals born without the corpus callosum.

Dr Brown is assisted by Dr Lynn K. Paul.

Dr. Paul is heading the Caltech Corpus Callosum Research Program and an inter-institutional research consortium on AgCC. The purpose of the Caltech AgCC Project is to "characterize the neuroanatomy, effective connectivity, cortical organization, emotional responsiveness and social cognition in adults with Primary ACC."

From the moment I met these two fine doctors I was impressed with their passion and commitment to uncover the secrets of agenesis of the corpus callosum.

On a purely personal level, this experience has at once been both cathartic and healing, both bringing up and simultaneously healing old wounds.  Finally having exacting recognition that what was "going on in my head wasn't 'all in my head' " has helped me bring closure to the denial and gaslighting, the shame and disgust heaped on me by my own flesh and blood.  One literally cannot "invent" a hole in his head, missing the largest single brain structure, responsible for so much in the neurotypical brain.

This, however, is not the primary reason I participated in the study; rather I wanted to participate because I knew how meaningful, how important this research is, and that perhaps a generation down the line it will permanently alter the lives of those born with this disorder for the better.  ACC, as with autism, in my observation of parents with children and adult with ACC is that early intervention is key to a positive outcome.  This research is tuned to not just present that there is a "problem" with not having a corpus callosum, but what exactly the deficits are.  Only knowing where the exact cognitive and socio-emotional-social issues are can we hope to improve the outcomes for people like myself.

I want to be careful and not talk too much about study specifics, as I agreed with Mr. Mangum I would not.  To do so would be to invalidate and leave the study open to irregularities for the participants in the future.

I arrived at the facilities on a Friday, we did some initial testing, then I had lunch with Dr. Paul. I was taken to the California Institute of Technology to have my "hydrogen atoms flipped."  By this, of course, I am talking about spending time in an MRI (Magnetic Resonance Imaging) machine.  I have tattoos on my body, and apparently this particular MRIs radio frequency was so strong that they were concerned of "cooking" my tattoos. (As they are unsure of the inks, some of which absorb the radio waves and can heat up.)  So, I spent the better part of an afternoon with ice packs in contact with my ink inside of an MRI scanner....WHAT an experience! LOL

They were able to get all of the various scans they needed of my brain and ACC.  Who could have imagined that being scanned was so exhausting! (but no cooked tattoos, thank God!)

The remainder of the weekend was spent taking various and sundry cognitive, memory, social and emotional based many I lost count.

For most of the testing, it would be improper for the researchers to go into any details as to the meaning and results of the examinations, and I went in to this understanding that. That being said, there were times that it was acutely obvious to me that I had problems performing certain tasks.  In one sense, to be honest this was excruciating.  It was confrontational to the "Nth" degree.  I do not mean the research assistants were confrontational, but that my "deficits were right in my face."  This was pretty painful for me.  I have spent my life in denial of my shortcomings, because I was constantly bombarded by those telling me they were fabricated, so for my own sanity I had to deny them.  But here I was, voluntarily an open book for the researchers with everything hanging out.  This has been both the single most painful yet liberating experience of my life. 

I feel that I finally have closure.  I no longer wonder that "maybe I'm just not trying hard enough" or that I am immoral or evil as my "parents" would have me believe.  I can now put that to rest forever.  They refuse science, they refuse any attempt at reconciliation, and it is truly their loss.  I feel terribly (for them) but will no longer let it rule my life, leading me around on a leash of misplaced shame and guilt.

Knowing that I can never have the reconciliation with my family that I desire, I have great peace, knowing that this research will change the lives of ACCers in the future.  Knowing that in my small part, I am making a difference.

On that note, I want to stress that you can make a difference too.  The NODCC, the National Organization of Disorders of the Corpus Callosum, founded by Dr Paul and Barbara Fonseca is an organization created to support these types of research, and to support and educate families affected by ACC is in need of your help.  The truth is, ACC is such a rare disorder affecting between 1 in 10,000 to 1 in 4,000 individuals.  We've not had the same exposure as has other rare disorders (yet), but I'm confident our time will come.

Dr Brown and the research team was kind enough to take me to dinner, to thank me for my participation in the study.  But really, I want to thank them.  Having participated, I now understand in more detail how important this work is for the future.  Participating in it has been a high point in my life.  I was treated with great deference, with respect, kindness and importance for my contributions to this study, and I am truly grateful to all who were there as part of it.

Truth be told, the weekend was perhaps one of the most mentally and emotionally exhausting and challenging things I have ever done...but I would do it again in a heartbeat, without any hesitation.

The research team and I discussed subjects I could write about on my blog, things that many parents have asked about but I have not yet covered.  I have a lot more material to write about, so please be sure to visit my blog soon in the future, and let others know about it.

Thank you everyone for your unwavering support,


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