Friday, September 27, 2013

These Wheels Part II

In the Christian bible, there are many references to those of us (which would include all of us) to being lifted up on eagle's wings.

But nowhere does it say that we had to walk over and mount that majestic wonder on our own, and in all reality, able bodied or no...none of us can. We are LIFTED UP because we have fallen for one reason or another but the means are the same: brokenness.

We lost our income
We lost our children
We lost our independence
We lost our Hope

And in this second part of "These Wheels", I want to tell you what this means to me. My point of brokenness...and at the point of which I finally asked for help and how I, daily, receive in large measures.

***

Truth: We aren't any different from each other. "Condition" or no..we all still experience the human condition, and that is enough in and of itself.

With a diagnosis such as autonomic autoimmune ganglionopathy (AAG) with mitochondrial overlap there is never a dull moment. There is really much joy to be had but also as much sorrow.

In fact, I've had regression in symptoms: dilated pupils which hinder my ability to see in bright light...and the loss of most sensation from the waist down. Which is which is hard to tell is it from AAG or the mito?

And does it matter?

It matters only here: the wheelchair isn't going away anytime soon. My current one was paid out of pocket at a reduced price, only to find that it was because the function was rather rubbish.

I did not WANT a new chair. AT ALL. I wanted my current one to be chucked into the garbage. I desperately wanted to not need it (or in all reality...I wanted to not need anything).

For reasons I know not, a gently used demo chair was given to me. My mother, who really couldn't afford this greatly reduced priced one in all honesty, gifted it to me. I spoke with the TiLite rep (I will be getting the TiLite Aero Z series I), and he was warm and genuinely friendly.

But shortly after talking with him and a few others...I felt my "self" crumple down and out came the water works. That chilling, shrieking call of desperation and defeat. What ifs popped up in my head, atwirl with self hatred for my conditions. Powerlessness in the face of a body bent on falling apart...so in order to maintain a sort of independence. ..spare parts are necessary.

Like a gently used demo chair. Like a rep that kindly told me that my repairs wouldn't bankrupt me...a chair with some bells and whistles that would help immensely.

After I exhausted myself from the screaming, all was very eerily quiet. To my perception in the very least. But uncertainty was replaced by peace.

And I had another heart to heart with my Creator. And it was simply this:

"Help me"

I laid still in this silence for quite some time. I then grabbed my smartphone and clicked to an album and scrolled to a piece of music I had played long ago: a Vivaldi piece with a difficulty level of 3. But after the third movement, it gave way to a concerto I had never heard before.

To understand the significant oddity of this, I am a die hard Vivaldi fan. I was sure I'd heard ever combo of every piece.

Apparently, I hadn't.

As this concerto gave way to another I'd never heard, a lightbulb flashed on.

I have had my creature comforts. A life and idea of stability I planned on benefiting from for, you know...forever. That "one day" would happen for me in some way, shape, or form.

But just like the two concerti I'd never heard before I was wrong. There is the road, the journey...and my God was it breathtaking! These were pieces I had never played before! They were magnificent...

...they were beautiful.

And as in the title of one of my favorite movies: "Life Is Beautiful"

It hit me like a ton of bricks. I've been given a life...a WONDERFUL LIFE. It only looks different from standard. Most don't have my condition. Most don't use wheelchairs.

And it doesn't matter.

All of us have peaks and valleys to travel, with support from other people or not. But my God, he has never forsaken me. He makes the decentions into the dark places for me a low lit candle. I cannot see much of the road ahead and I was never meant to. He has led the way, never once leaving me to my own devices. Even without other people present, He has always been here.

If I were truly alone, I wouldn't have a platform from which to establish a connection to you. I didn't say "stand", only because in the season I do not stand much. I cannot feel much below my waist.

But I can feel my own heartbeat...and I can feel the One who conducts it.

And in this position tears spring forth once again...but not out of any type of emotion besides of love and of gratitude.

I look at these wheelse and the ones to come, and whisper simply:

"Thank you"

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