Thursday, May 31, 2012

At Least She's Pretty

Glass Brain from Corning Museum of Glass

A story I like to tell about my brain: many, many years ago ( in about 21), I had to see a neurologist for some minor eyesight loss due to a migraine. (Very minor -- my eyes have compensated and I only notice the missing chunk in very specific situations.)

They were trying to figure out why this happened. (Gasp! They never did.)  I got rounds of tests. Lots of tests.  Eventually, I was sitting in the office of a neurologist who was looking at my MRIs.

"Well, you have the smoothest brain I've ever seen...none of the typical surface imperfections..."

I like to tell people that:  I have a smooth and perfectly surfaced brain.

So this glass brain called to me.

Now I will picture my own brain like this: quite beautiful on the outside but, well, like a book -- you can't judge this brain by its cover.

My brain can be challenging and I'll be writing a lot about that in this space and how we are constantly working to come up with coping mechanisms that allow me more comfort and ease in my day to day.

But today I wanted to write about the beauty of my brain.  There is much that I love about this aspergian grey matter.

Until I knew about my Aspie nature, for example, I thought that everyone had deeply intensely passionate feelings about their special interests.

I am learning that NTs don't even necessarily have special interests.  This is beyond confusing to me.

I thought everyone around me felt the kind of Big Awe I feel on a regular basis about life and the mystery of life and the beauty of it All.

I assumed that everyone had intense conversations with themselves every day. Out loud.

I assumed that jumping up and down and clapping with Extreme Excitement was part of everyone's response to something fun or new or interesting or funny.

I didn't know that most people no longer SQUEAL by the time they are my age, 43.

You get the idea (or maybe you don't).

When I am feeling a bit of self-pity about my difficulties with Executive Function or my inability to understand simple concepts like friendship or my need for "too much" (in my opinion) downtime, I try to remember these shiny amazing things about this brain.

It quickly brings me back to my reality: I would never give these things up in exchange for the other.

I only know one way of being -- mine.  And I happen to like it.

Tuesday, May 29, 2012

And So We Begin

Imagine that for your whole life you thought you were a cat living among other cats, and then deep into the middle of your cat life, you learned that you were actually a fish.

This would explain a lot, like why you were always feeling out of place, why you were always exhausted (a lack of water will do that to a fish), why everything about your cat life felt distracting, annoying at the least, and painful at its worst.

This has happened to me, and it has taken me a while now to think about writing about it all, to decide that it needs to be written about, and then to build up the courage to write it.


Even as I type, I am still resisting.

Though many people in my inner real life circle know what I am about to write, I still feel the possibility of the stigma...  I have had one person, in real life, already say to me, "Oh...isn't that a fad?" or something along those lines. That is not someone I will be sharing with on an intimate basis ever again.

At the other end of things, when told about this, the people who know me really well simply nod, and say, "oh...right...yes..."

I have written at Girl on Fire and on blisschick fairly extensively and openly about my chronic depression and anxiety.  For a while, there were even other lenses through which Marcy and I were viewing my "symptoms" and difficulties.

None of it ever truly fit.

None of it ever explained everything.

None of it ever helped me.

And it especially did not explain everything once I returned to dance and found this passionate work which allowed me to breathe and fully live.

Even with all of that and the depression lifting, I still suffered daily difficulties.

When I try to explain this in writing, please remember that there is no way to explain this in writing.

The intensity of my daily struggles are understood only by me and by Marcy who daily has to witness my frustration and pain.

Marcy, the most patient, loving human being on this planet who finally figured it all out.

She has watched me struggle, and then she would hit the books, trying to design methods and organizational tools and schedules and anything she could think of to help me navigate through my days, suffocating under weights that other people would see as "light" or at least very tolerable, do-able.

We spent countless hours upon hours talking about what it felt like in my brain, what the struggles actually made me feel, what would precede them, and on and on.

And one day, it hit her that I perceive TIME differently than other people, and she found a woman writing about her child perceiving time differently and she read it to me, and I almost burst into tears...yes, that was IT!

She looked at me confused and I looked at her confused, both of us flabbergasted that we could know each other for almost twenty years and never know that we thought about something so fundamental to the human experience in completely, bizarrely different ways.

As it turns out, Marcy (if you couldn't guess) thinks about, experiences time like the general population.

I do not.

Looking back on all the ways she had devised in the past to try to help me, she realized all her methods had come from special education. (Marcy is certified in education and likes to tease that she took classes in me in college in preparation for meeting me one day...)

When all of this came together and we started reading and I took all the diagnostic tests and we kept reading and reading and reading, the relief I felt cannot be over exaggerated.

This changed my life.

This GAVE me a life.

Everything in my life suddenly made sense, and yes, I had moments of grief about this because my brain will never process things in the way that the world around me assumes that brains process and this creates a vast array of difficulties, but to understand WHY I can be so "smart" and yet have such a hard time is like I was that fish and you just threw me in the lake.

I am an adult Aspie (and I will continue to use that endearing nickname regardless of the DSM V, where ASD does not belong).

My brain is different from yours.

My brain is difficult.

But my brain is also beautiful in ways that you neurotypicals cannot imagine.

Just like I cannot imagine your difficulties and beauties.

Because the site, Girl on Fire, is for me to explore and write about my love of dance as a spiritual path, and because I think it's super important for more women in particular to be writing about ASD (Autism Spectrum Disorder), I am starting this new site, Monkey Brains.  (This post is being repeated at both sites today.)

You can read my Monkey Brains About Me page for more information.  Girls/women on the spectrum look totally different than boys/men, and because of this are not getting diagnosed and helped. I am a passionate supporter of neurodiversity and so you will never ever find me writing about what causes ASD or how to "cure" it.  This is who I am.

Love it or leave it.

Or watch out...Monkey's throw their shit when excessively offended and Marcy did not arbitrarily nickname me Monkey many years ago.