At the onset I thought that I would never find my way out of the incredibly life strangling emotional nightmare I was screaming in.   It was controlling my every thought, movement, desire, and wishes.  It took control of me…

            To me, living without a normal functioning vestibular system, with no sense of balance or gravity, and that crazy bouncing blurring vision was what it might be like living without ever being loved.  Or worse yet, losing all the love you have ever known.  It was so very sad to me loosing something so personally right for me.

No matter what is taken from someone and in its place left a disability, that loss is overwhelmingly devastating.  It touches the very center of a person; the place where all things come together that makes the person who they are.  Then, out of nowhere like a stealthy trickster, something or someone takes that center and pushes it out of kilter by squeezing in a completely foreign object.  It hurts, it hurts real bad.

            Disability isn’t easy and I don’t wish to imply that it is.  It isn’t something that can be accepted with a flip of a thought or even a hope and a prayer.  It’s something very personal, unique, and different for every person with a disability.  It takes time, a whole lot of time to come to whatever terms of relationship one comes to with their disability.   What might work for one, won’t for another.  How one person feels the other feels opposite.  Disability is hard.  It challenges each and every day, hour, moment.  It puts up a hell of fight and tires one out through a dance of dodging emotions.

My disability controlled everything inside and outside of me.  It wouldn’t leave me alone inside through its never ceasing swirl of dangerous thoughts beating up my brain.  It took control of my movements, my vision, my getting from one place to another.  I was captive in my own inside.

Outside everything teased me, bullied me and even beat me up.  My environment, once fully in tuned with my inside, had turned into a lifelong motion picture of tragedy, with no end, no co-stars, and no credits to cheer about.  There was nothing on the outside that felt comfortable any longer.  The outside was one long continuous obstacle that took a lot of planning to figure out.  It took up a lot of energy just to find even a little space of comfort where the inside and outside could come together for a few moments rest.

Everyone with a disability has their own unique story.  Mine is what I made it and so is everyone else’s.  I cannot express how touched with awe I have been through witnessing others as they journey through their lives with a disability.  Some of the amazing people I’ve meet have extraordinary lives living with disability, some quite severe where one might think, how can that person be so happy?  I think it has a lot to do with control, who controls what – is it the disability controlling the person or is the person controlling the disability?

That was a question I pondered for some time.  At first I thought, really, how can I control what’s going on with me, with what my brain and body fights me with all the time?  I didn’t have any control over it; it was taking control of me – everywhere, inside and out!  I was under control of something I had no true understanding of.  I didn’t understand what was happening to me.  Even though I had read what I could, learned as much as I thought I did, I still did not really; truly understand what disability was to me.  And I certainly could not control something I didn’t understand.

So there began my studies.  In more classes than I ever thought I would take.