If you look at me and see
a diminutive female struggling
in her chair to get across the street
before her battery dies;
Frumpy in her too big coat
and her too small shirt
with her "too big" breasts and "no neck,"
you're missing the whole point.
You'd have to take a deeper look,
which most people have no time for;
cocooned in their private media bubble as they rush past.
Well, not all of them. To be fair, some of them stop to talk to me.
But mostly they pat me on the head and reassure me that God loves me
and that I am so brave. Or ask me if I want to race.
Or tell me that they don't know how I do it.
I want to say "oh, it takes a little more careful planning but it's possible."
Then put on a shocked look.
"Oh, that's not what you meant? You meant just living in the wheelchair?
I'm sorry, did I make you feel uncomfortable?"
Well, here's your answer. Your big newsflash.
I don't know how I do it either.
If by it you mean the wheelchair. Because that machine doesn't factor much into me.
I really don't think about it very much except when I'm made to.
What I don't know how I made it through
were things like the hitting and repeatedly being told in every way possible
that I was a disappointment who didn't matter.
But I clawed my way through and up,
fingernails caked with the dirt of my reality.
Battle scars worn with pride,
and strength in the knowledge that I still smile and actually mean it.
That I know that the universe and every creature in it is basically light and good,
no matter what.
I've known it since before I was born.
(And Alix in my iPod says, "welcome to the stick world, baby girl...")
No, that's not Pollyanna. That's a Phoenix. There is a big difference.
I'm not ignoring what I went through anymore. Or for that matter,
what I'm going through now.
I'm still days away from 30
stuck in a nursing home with almost constant sickness and other hard things around me
with an almost completely non-involved family, people dying every day,
my best friend struggling for breath and to stay above the pain.
When do I just get to say it fucking sucks?
When do I get to crumble and be held and not have to be strong?
But I still climb, on my own, and with the friends who do see me.
And you should see the views sometimes.
Mountaintops above jungles.
Sunsets on beaches.
And a grand feast on a cruise ship, once.
All in my mind or real?
That's my decision, my experience.
I love to touch people with quiet joy,
singing just the right karaoke song,
or giving the right words or a hug.
These things will matter someday, if they don't already.
People will remember the gifts, and so will I.
But ask me who I am and I don't know. I'm still learning.
But what I am is a Phoenix,
a warrior against those who would make me
invisible and obscure.
(And Ani on my iPod
"and I sing sometimes like my life is at stake,
cause you're only as loud as the noises you make ...
and I sing sometimes in this war that I fight;
cause every tool is a weapon
if you hold it right.")
I am a light being who uses music for breath,
dancing for stretching, singing for a voice,
and laughter for food.
Someone who knows that love is what truly made the universe
and therefore should not be limited by physical parts or gender
or lack thereof.
That kind of different is the only label I will wear with pride,
though generally I despise labels.
Because knowledge is power.
And our internal eternal power is the only thing
that's going to change the world we live in for the better.
So I say bring it on.
And maybe next time when you see me
so-called struggling across a street,
you won't pity me or be scared,
but only feel proud that I'm there
marching beside you.
-Amber April 15, 2007