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Tuesday, September 22, 2009

An Irrational Body, A Perfect Mind

An Irrational Body, A Perfect Mind

Speech is the most commonly used form of communication in the world today. You go up to a friend and say, Hi. Your friend responds and you flow from one topic to another. Before your friend has stopped talking, another thought has formed in your mind and out pat comes your spoken output. How easy it seems.

How would you feel if someone told you that you could not utter a word all day or communicate in any form? Even if people or your best friend told or asked you something, you could not respond. If you were hungry or wanted something, you could not ask. If someone was mean to you or you didn’t like the way some things were done, you couldn’t talk about your frustration. That would probably be the most frustrating day in your life and you would be mighty agitated. Now, what if this story was repeated day after day, year after year?

From age three, I’ve had this diagnosis of Autism. And for close to eight years since, I was trapped in a silent world. I could hear and understand everything around me. I had no speech. I had a rather crazy body which I could not quite control either. I could not point to the right answers or hold a pencil for handwriting. All people saw was this kid who was in constant motion, unable to sit still and who apparently was incapable of learning anything meaningful.

               I remember

I remember at 1,
A bright baby was I, bouncy as can be
Learning to walk and talk just as babies do

Cooing and laughing, intent upon fun

The future so bright and the grass so green

I remember at 3
The world torn asunder around me
Helplessly hearing a diagnosis that perplexed me
What is this autism they all talk about?
The future turned dull and the grass turned brown

I remember at 6
A parade of therapies surrounding me
Understanding not the person that was me
Tossed between teachers both kind and mean

The future so bleak and the sky’s so gray
I remember at 9
“Why does he act so,” the general cry
“This body does not reflect my mind,” my silent reply
Repeating lessons that bored me to death
The future so dark and the day turned night

I remember at12
Happiness arose as my words were typed
Potential of this bright mind now sets in
Wonder at the difference of the body and the mind
The future so bright and the sky’s now blue

Quite by accident, I was introduced to typing at age 12. I always wonder why it is assumed that a person like me would have only twenty or at most 100 things to communicate. Does not a typical person say and have thousands of feelings, thoughts and wants? For me, the letters on the keyboard brought a power beyond belief - a way for me to show the world, the beautiful mind inside this dysfunctional body. It opened a whole realm of interaction, which was exciting yet overwhelming in its sheer possibility. Would I be able to pull it off, I wondered? Ever since I can remember, I have been always been observing, analyzing and contemplating. Just because I could not talk, did not mean I had very little to say.

                   The Person Inside
Set in stone seem your opinions
Can’t do this, Can’t do that
What pray should I tell you?
Just reach down into this bright mind

Can’t possibly communicate you say
Unless words pour from my mouth everyday
What pray should I tell you?
Written words is the technology of this age.

No intelligence possible yu say 
Inside the body, that acts a certain way
What pray should I tell you?
Big mistake to judge a book by its cover

Help this person is your goal you say
Careers and promotions you get along the way
What pray should I tell you?
Are you helping me or you.

Human evolution is nature’s creation
Thousands of years has existed mankind
Yet, opinion is set by a few who limit
The potential of the magnificent human mind.

But, do speech devices solve all communication problems for people like me. Batteries die, charges run out and devices get stuck. Some famous landmarks do not allow any electronic devices inside for security reasons. They don't work in the swimming pool or in the rain. Such devices are expensive and will break sooner or later. They are bulky to carry around. The speech on some is mechanical and devoid of emotion. 

Besides, typing is slow work. Not all of us are fast ten fingered typists - some of us type with one finger and some with two. A person can speak a lot faster than they can type. Your voice is inbuilt and goes with you, a device has to be carried around. You have to have access to the device, turn it on, maybe clear the screen, type, and then press its voice activation. The spelling has to be near perfect or it won't work well. Your partner has to patiently listen to your output before voicing her next thought. How stilted does this sound? And imagine a typical kid having the patience to have this really slow conversation in the middle of play. And if you add body control issues like I and many other people with disabilities have, it makes it even harder and slower.

Yes, technology has to improve but it has been a big part of the solution for me. Where would I be without it?

Autism is a spectrum disorder, which means that no two individuals have the same set of issues. It’s a diagnosis based on broad observations of external behaviors while in fact there could in reality be multiple sub-sects based on underlying physiological and pathological makeup. Social interaction seems to be a broad observable underlying similarly. Are you surprised at this, given all the emotional and physical baggage we carry?

A typical high-schooler friend of mine once told me that his volunteer group was initially freaked out at the thought of meeting kids like me. I understood perfectly what he meant. All of us share a nagging fear of the unknown. The main difference was our coping mechanism. When you have communication challenges, it becomes harder for people like me to ask questions and thereby get our fears and anxieties reduced. So when we are put in the new situation without having this backup mechanism, it ends up with us being in an extra-heightened state of anxiety. People with autism and other disabilities just manifest this in ways that may be considered socially inappropriate. I may start making more noises or get hyper or even get upset, even if its’ an activity/person I really end up liking later on - all part of our coping mechanism and reaction to change. From our side of the fence, we do want very much want to mingle and have friends, yet behaviorally we do end up doing things that seem to give the very opposite impression. The way to lessen these irrational fears is basically lots and lots of practice on both sides of the fence.

My heightened sensations work, both for and against me. They allow me to take in and analyze details often missed by others. At the same time, they result in sensory overloads, which are difficult for my mind and body to handle and heighten my external ‘autism-like’ behaviors and worsen body-control and coordination.

Adolescence is quite a transition for most, not an adult yet not a child either. With the changing biochemistry of our bodies comes an influx of emotions, thoughts and feelings. Over the next few years I will have to navigate this ocean of both knowns and unknowns, securities and insecurities and some strong emotions thrown into the mix. Given my existing autism related issues, this mix is going be doubly challenging both for me and people around me.

Many times, I feel like I am not one person but two. I know I have this incredible mind. I can grasp complex concepts with ease. I have an innate grasp of language. Language is but a form of communication used by men – variations of communication in different parts of the world. Looked at it in this form, why should deciphering prosody of multiple languages be that difficult? My logical mind easily understands and enjoys the patterns and harmonics in math and music. Science is the pure art of discovery and second nature to me. Nature is one of favorite topics I like to write about. Nature is poetry and poetry is Nature. Nature is like a vast sea of intriguing delights just waiting for you to dive in, explore and experience.

On the other hand there is this body of mine. I love music, yet struggle to sing or play an instrument. My mind races along, but my finger, controlled as it is by my body, takes a long time to type a single thought out. Many a time, my rational mind stands back and looks on in frank amazement at the behavior of the body - a body, which is so ridiculously illogical and irrational. Why should the mind struggle so much to control my coordination and emotions? Is my body an unresolved number like Pi, phi and the golden ratio – one that eludes a complete solution?

                        Me or We?

If I were a math expression I’d be

Irrational Number Body

Perfect Square Mind

A body that acts quite on its own
A mind that can only watch and mourn

Body, the numerator, mere flesh and bone
Irrational number like, a math anomaly
Visible to all, pure absurdity
Mind, the denominator, profound and wise
Perfect square like, just ecstasy
Hidden from sight, pure tragedy

Body just limited by space, movement and time
Mind without boundaries, infinite times

Two seeming identities in one unreasonable body
Perchance, I should be a 'We' and not 'Me.'

I crave the 'Me' and not the 'We'
How do I go from the 'We' to 'Me'?

Two roads diverged as in Robert Frost’s poem, and I somehow found myself on ‘The Path not Taken’, and the one, “Less Traveled By”. I wonder what the other road would be like where definite maps and solutions are available for much of everyday life. My road is at times challenging and yet exhilarating too.
I journey on my path, though I know not where it leads, even as I constantly look for solutions.

- Hari Srinivasan

1 comment:

Archana said...

Your approach to your life is commendable Hari..