Friday, November 7, 2014

Tick tock goes the clock

A Repost from July 2013:
Tick tock goes the clock
And what then shall we see?
Tick tock until the day
That thou shalt marry me
Tick tock goes the clock
And what now shall we play?
Tick tock goes the clock
Now Summer's gone away?
Tick tock goes the clock
And all the years they fly
Tick tock and all too soon
You and I must die
Tick tock goes the clock
He cradled her and he rocked her
Tick tock goes the clock
Even for the Doctor...

What does Dr. Who have to do with Agenesis of the Corpus Callosum..?
Good question!

I've always really identified with the character of Dr. Who, and this is why:

His sense of time is fluid and "corruptible" (changeable) 
He has two hearts..; I have "two brains" so-to-speak, 
moreso than one integrated whole.

His fear of attachment (emotional) because he will outlive them all,
I am loosely attached to people in my life, because I see them all, and myself, as just fleeting images, "they don't know who they are", I have no fear of mortality, there is no such thing as death for me, but it seems to cause everyone else around me so much suffering.
I'm more interested in who you are, 
than I am who you think you are.

All of this, and yet the character called The Doctor is still bound to life and death, intimately  in fact....

This body-mind-personality thing will have been around for 51 years in a few weeks...

We continue to revisit those things in life that we have not yet mastered, and my first half century has been "interesting."  Yet, knowing what I do now about my brain and neurological wiring, the, um, "world is my oyster." 

I am currently given to take care of someone I love and respect with all my heart, as her body-mind-personality thing, is nearing it's completion, the body puppet succumbing to cancer. Were it not for her, I'd not have been able to realize everything that is so much part of my life now...surviving Hep C treatment, discovering about my AgCC/ACC, and everything that came with it.

You see, I had been doing years of work to try and improve myself, yet this piece was missing, my ACC and everything that has developed as a result.  Unconditional trust, love, and support...can do magical things to the most hardened of hearts...She taught me to all out, no holds barred, believe in myself.  Barely off chemo herself, she was there 24/7 while I started treatment (the beginning was really rough for me) and as I quickly improved...

She was determined that she would "live long enough to see me become the person she knew that I was", to realize my potentials...she is, as I write this doing so.  

What else could I do for this person, who is like a sister, best-friend, mother-father figure, reflecting my image back to me, my potential...etc..?

I wish she would live for another 50 years, but this is not to happen...I've not even a guarantee that I live for 51 years...treasure every moment.  To turn away from my own needs and wants and comforts, and focus entirely on this person, even if it is just being there... 

I am approaching 51 years, and just want to thank all of you who have been with me along the Way...no guarantees, treasure each moment.  Make a difference.  Turning obstacles into opportunities.  Changing myself, changing the world, if only by my taking baby steps...

My medical team is in the process of going through what I can find of childhood records, medical, education, etc...they want to have me re-evaluated, in light of firming establishing me "along the spectrum" (ASD.)  I have found that ignorance runs deep.  Not just surrounding ACC, but any of the "unseen" disorders.  Most often I get the "we didn't have that in my day, our parents would have beet it out of us..."  They do not understand what a DD is.


Why such things frighten people is beyond me?  Why?  Because this is the story of my life.  It is my norm.  But on observation of others I see people who are terrified of anything under the umbrella "mental" "emotional" "developmental" "intellectual" disorders.  Again, this is the outside looking in, but I see people who think this too close to home.  They believe they are their mind, emotions, behavior and intelligence. They are wrong.  They don't know it though, so subconsciously, they project, fear, hatred and disbelief on those of us living with such a disability.

I've said it before, and I'll repeat it again.  My own parents were generally of the Protestant Work Ethic train of thought: "you're just not trying hard enough, work harder and everything will be ok."  My own father told me in his own words "there is no such thing as mental illness, only moral weakness." Denial ain't just a river in Egypt.

Over the past, say 7 years or so, I have begun to "map" my internal world.  What I mean is that for the first time, I have a more or less accurate way to describe my internal states.  I've been able to do this in great detail in writing, but in conversation and daily life it is simply not there. 

Many born with ACC find it difficult to describe their internal states.  In fact I've known for some time I confuse them.  For example, I cannot often tell, "I am feeling anger?  Or is that fear? Or maybe both?"  Until recently I've not had the tools to accurately navigate emotions internally.  I've also not had the understanding that what my body is feeling (in any given moment) may not be emotion, may be just response to the environment...or maybe emotions after all!  Thanks to hard work and therapy, and support from my Neurologists, and doctors and such this is at least within my reach.  It's not something I'll ever be fluid and consistent with, ACC is the antithesis of consistency; yet I still have a better idea how to navigate all of this.


I was currently approved by the State to have IHS, or in home services to assist me with my ADLs on many levels.  This is a game changer.  I am capable of all kind of feats of creativity, engagement and service, if I'm not distracted by the constant confusion I incur when trying to navigate the simple daily world that neuro-typicals find so easy.  Remembering to eat, remembering oral care, hygiene, dishes, laundry, oil in the engine, watering the lawn, taking out the garbage, navigating the stress of appointments medical and otherwise, managing my schedule...all things that I can do "mechanically", but cannot do consistently...thank you ACC and a non-functioning working memory :(

This will help me focus on my upcoming non-profit for ACC, and other projects I have in the works.   I am so very grateful.

I haven't enough words of thanks to those who have believed in me and supported me, emotionally, morally, and otherwise, so many of you.  


~joseph

3 comments:

  1. Wow!!! Now i can see how my daugther feels. Thanks.

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  2. Awesome Giselle,
    I hope I can touch on commonalities of people with ACC, that maybe my words ring true and help someone. I always tell people to keep in mind that ACC like ASD is on a spectrum, all our experiences are "common but different."

    Glad to be of service <3

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  3. Dr. Guru-who <3
    I loved this! It gives me a better perspective into your perspective. Thank you. Sometimes all it takes is finding the right "language" to express yourself for things to click for another.
    Sat Naam <3

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