Sunday, January 4, 2015
"The two most important days in your life are the day you are born and the day you find out why...."
In October of 2008, through the encouragement and support of my dear late friend "T", I was diagnosed with ACC and later ASD.
That day was truly the most important day of my life. One in every four thousand births globally are born with a disorder of the Corpus Callosum...many (like I was) suffered through their lives, misunderstood, incorrectly or completely non-diagnosed, questioning our own sanity.
While ACC can be considered a spectrum type disorder, while individuals with it can appear severely disabled or relatively "normative", research bears out that all born with a collosul disorder experience certain cognitive and memory traits, social and communications traits, not seen in the general population.
I want my average reader to put yourself in my shoes, up until 2008. I was a man in my forties, that had been shuffled off with various mental health diagnoses, and when neurologists may have been aware of congenital brain defect, it was often shuffled off to the tune of "well you didn't need that 'little' piece of your brain, anyhow" or some such ignorance.
Truly that day in October in Southern California, was the day I found out why I was born. I had a choice to mourn, to feel slighted, and angry, manipulated and shunned (which I did, even after the diagnoses for a short time), or I could let it inform the rest of my life. My diagnose(s) with ACC and ASD filled in the missing pieces of a picture, of a puzzle that was of my own unique making. I knew immediately what I had to do.
I decided, with full knowledge that it was too late to heal the rifts and wounds in my own family, inflicted by ignorance, hatred, and shame, but I could help heal, or even help others avoid, from ever having to go down that road in the first place.
I want you to hear me again:
One in every four thousand births are born with a collosul disorder.
It is possible that one in four thousand people you will ever meet, are born with this congenital brain injury, and never discover "the day they found out why."
Agenesis of the Corpus Callosum is the most common congenital brain defect in the human gene pool, even as it is so exceedingly rare. I want you to think long and hard about all the many going through life, fighting for life, that are constantly on a daily and hourly basis running into stumbling blocks, and outright barriers to living the full life, a life of meaning, a life of purpose and fulfillment.
I can tell you, I think about them, all of them, every day. I know their struggle, self deprecation, self induced hatred and shame, and depression.
THIS is why I was born....
And don't get me wrong, I don't style myself anybody special. Not, at least in any exclusive way. All I know, is that out of my own grief and pain and desire to heal the wounds of my childhood and much of my adulthood, I can reach out to others with ACC. I can reach out to their parents and loved ones, providing them what little support I am capable of.
Here's the rub though....
What about those many undiagnosed ACCers out there? To have this condition, and to not know it, is nightmarish. Uneducated doctors will diagnose that person with a number of conditions, bi-polar, schizo-affective, personality disorder, or worse, because they lack the training to recognize this most common of rare congenital birth defects
I want you to walk in their shoes...
I do, I walk in them every day. Although I have been blessed to be diagnosed and treated, been blessed to endeavor not so much to change what I thought broken, but to thrive with what I have been given. We are not all savants, like my hero Kim Peek, whom the "Rain Man" movie was modeled after, who had ACC; but we, each and all of us do have a gift, a reason we are here in this world.
I envision the day that ACC is as well known as autism. One could make the argument that ACC is the second most common developmental disorder next to ASD. There are many reasons that this hasn't happened yet.
I'm in the process of writing a book about my life, and about what it is like to live with this disorder; what parents and loved ones can do, if they suspect or know their child or loved one has ACC. As with ASD early intervention is absolute key with ACC. Sometimes the child with a collusul disorder shows barely any "symptoms" until the age of 13. This most magnificent part of the brain, at 12-13 "revs up" begins making new connections in the brain, increasing higher reasoning and socio-emotional skills. It is largely at that time that a child with ACC is seen to lag behind her peers.
I had been wrongly diagnoses with ADHD from the age of 5 myself, they ASD diagnoses did not even exist at the time. Let alone, doctors were (and still largely are) ignorant about this most common of rare birth defects, and its many implications. I remember those days clearly, I remember being 12 years old, having no friends, I remember feeling like a five year old amongst graduate students.
In Junior High, before I was put in "special school" I remember running up and down the hallways causing mayhem, just in the same way you would imagine a five year old. I couldn't grasp the concept of personal or social responsibility. I lacked any formation of "Theory of Mind", or the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own. I lived in a world of fantasy at a time when my peers were already thinking about such things as growing up to become an astronaut, a fireman, a father and a husband.
I thought and believed that what I would watch on TV was reality. My personal confabulation was so strong I often could not tell objective reality from the fantasies generated in my mind...I knew I was different, but I didn't know why I was different.
Following the "lead" of my parents and peers, I learned to treat myself with rage, disappointment, embarrassment, hatred and disgust. Through the constant Gaslighting and denial of my parents, I was lead to believe that I was a morally flawed individual, that I "just wasn't trying hard enough", was "lazy" "manipulative" and worse, my own father branding me a "psychopathic liar."
Such was my introduction to adult living.
I had such a fear and distrust and misunderstand of myself, that I had been convinced by others that I could not take personal responsibility for my life...and I carried that baggage proudly until the age of 46 when I was diagnoses with ACC and autism. As I have written before; sitting in the neurologist's office, I could see him being pensive, worried about how I would take the news, as he explained to me after looking at my brain scan "do you know, you were born without your corpus callosum?"
In that very moment, all the self imposed shame and guilt began to melt like a glacier in the sun. All the years of gaslighting by my parents and some others around me, having me believe that I was insane ended in that moment. The "light" turned on in my head, I knew WHO I was "when I was born" and WHY I was. The relief was palpable.
It has taken me years, and will take many more years, to fully recover from the shunning and gaslighting of my family, and ignorant doctors, but that is OK. I know why I am born, why I am here...if I can help just one, single person or child with this congenital defect not go through what I had, I will have done my job in the world.
In a few weeks I will be participating in the Corpus Callosum Research Project ran by Dr. Lynn Paul. There will be three days of taking pictures of, the poking and the prodding of my brain and behavior, to better understand Agenesis of the Corpus Callosum. While there is sure to be a great deal of self-discovery in this process, largely I do not do this for myself. I do it for all that are born after me with ACC, to give them a better life. I do it so that people like Dr Lynn Paul and Dr Elliott Sherr can better understand this gift I was born with, better equipping boys and girls, young men and women, old men and women alike, to better live...nay...THRIVE with ACC.
I will try to write during the process, although it may have to wait until I am through, we'll have to play it by ear, but you'll be sure to hear all about.
I know I have already, but I want to take this time in the first days of 2015 to thank all of you that have been and continue to be part of my journey into self discovery, thank you for supporting me, supporting my blog and all my efforts. Let's each one of us, as much as possible help others with ACC find out not only who they are but why they are. We need not languish in the shadows any more, but thrive in our own unique ways.
God Bless you all, and I wish a very happy, healthy and productive 2015 for all of you.