Monday, April 23, 2007


"My soul, is as open as the sky.
Often time, it's just as blue.
People tell me, I need to keep on dreamin'.
That's just what I'm gonna do."
-Amos Lee, "Dreamin'"

"So that is the xA," the man said as I stepped out of the white "Suburu Outback-mini me" and closed the driver's side door.

"What do you think?" I could hear my mother's voice from the other side of the car.

"I love it. It fits me perfectly," I said. Perfectly, except for one thing.

I had no idea how I was going to bring it up. I didn't even really want to. And the whole car buying experience was always something that I dreaded. It had this intimidating "Meet-The-Parents" feel to it and I would have rather not been bothered with it. But at the same time, I always viewed it as this right of passage event that would help mold the future for yourself - like a Quince party or a Bar Mitzvah. This whole ordeal would certainly mold my future, alright. I didn't realize how freakin' nervous I had become.

"So, you like the car. Is there anything else I can help you with? Any more questions?" the guy looked like he was sweltering in his blue denim Toyota/Scion shirt.

"Well, actually," I started. Where was my voice? Where did it go? I was clinging to my purse for lack of anything better to fumble with. Let's start this thing over.

"Actually, I was wondering about your mobility program. I read on the website that you have a Mobility Financial program and I was wondering more about it," and then here comes the part that made me choke up, "The MVA recently put a restriction on my license, and since I have a slight physical disability (lump in my throat enlarges) they have recommended that I get a left foot accelerator placed on the car. So I wanted to see how much I could get in financing, and how much this car would cost to get a better feel of my financial situation."

There, it was said. "Slight physical disability"

"I actually don't know too much about that, to be honest with you," he said.

Gee, well that makes two of us, Mister.

Basically, it comes down to this:
One left foot accelerator (parts alone) : $357 - $545
Labor: $500 - $1000 (I am guessing, only because I have to go to a "special" auto shop that puts on adaptive equipment)
My pride: Priceless

I know this sounds a bit silly. To be 21 and talking of pride, especially knowing that I am not the pioneer in driving adaptive equipment...and even moreso knowing how much adaptive equipment my brother is going to need later down the road.

But just for a second, let me humor myself. Back at GS Hospital, with the lady sitting there next to me, after we played "Finish-The-Picture" and "One-Of-These-Things-Is-Not-Like-The-Other" with black and white pictures, she made her diagnosis.

"I think would need some...hand controls," she said in a way that made her sound like she was pulling this wonderful trick out of her big black bag of adaptive equipment magic.

I was stunned (for lack of a better word). It just...killed me to the core.

"No, I don't think I need hand controls," I somehow found my voice and tried my best to make it a "don't - F -with - me" tone, "I think I would do much better with a left foot accelerator. I have heard that they make those, don't they?"

"Hm, that is a very good suggestion. I never thought of that." Yeah, I'm sure you didn' know with all the concrete impressions of me you've created being a mentally-retarded and incompetent person based on what's written on medical records.

I made sure to watch as she wrote "left foot accelerator" on the paperwork she was faxing to the MVA.
When I was four years old, I knew what I wanted to be when I grew up. A doctor and the girl without the leg braces.

I told my mother that when I got older, I never wanted to feel plastic and velcro around my legs again, never wanted to wear large body casts, and use a walker or canes anymore.

"Mommy, when I get older I will wear any shoes that I want to wear!" I used to cry every morning while putting on the big orthopedic shoes that were two sixes too big in order to fit over the plastic leg braces.

The doctors told me at a very early age (possibly because I complained so much to them) that the outcome of me never wearing braces again was slim to none. I had horrible balance when I walked without them. My right leg had become the anchor that weighed down my childish energy and tied me back from running as fast as I felt that I could. The muscles along my right calf and hamstrings were tight and stiff, and left me walking around much like the spooky Frankenstein at Halloween...with heavy feet and a heavy heart.

I refused to let that get to me though. I kept telling myself that it was okay to dream - to believe that no matter what people said, I'd learn how to walk without leg braces if it was the last thing I did.

Five years later, I proved them all wrong.

"It's a risky situation," Dr. S warned me, pressing his glasses into his face even further, the way he does when he is contemplating something very serious, "you could either come out of this tibia rotation surgery with full mobility... or extremely limited mobility. I won't know until I go in there and see everything for myself."

"I really want to do this," I said, nodding my head for what seemed like the upteenth time. I was nine. I didn't know what color socks I wanted to wear in the morning or which new Barbie I wanted for Christmas but I knew this. I knew I wanted to walk without braces.

Five or so hours later, I emerged in full out pain. I think it was the worst pain I had ever experienced to this day. I felt like my right leg was being ripped from its socket, and twisted and stabbed at with a knife. But when I looked down, all I saw was a huge white body cast from my waist all the way down to my toes.

It would take a year after my recovery from surgery before I learned how to walk all over again. I started crawling at four weeks post surgery...which basically meant that I would creep on my arms and my hands like a soldier in the line of enemy fire, the rest of my body immobilized to lay flat.

I kept the dream alive though. Every stumble, every fall, every time I wanted to give up, I remembered that I had promised myself that I would walk without braces...walk without any sort of help at all.

I think of my first day of getting my first "real" pair of shoes as a rebirthing. I can never forget how the tears felt running down my face as I slipped on my very first black patent leather shoes and felt the soles against my skin. No thick and heavy plastic in between, no velcro straps cutting into my skin. It was me, my feet, and my shoes. I spent the entire day in the basement of my parents' house, tapping against the hard floor to hear the sounds, to feel the movement and to bask in the dream that I had made a reality.

So I'll keep dreaming...and I know one day soon, I'll be driving...and I can't wait to prove them all wrong again.


Latoya said...

Damn EJ -

I almost cried at my desk reading this.

I guess it's one of those blogosphere things where you "know" someone by words only.

I never knew you had to struggle so hard against society being slightly disabled. That battle is still one that's fought very quietly. To be honest, I've heard the term "cerebal palsy" but could not tell you what that means or how that impacts someone.

I do know this though - you are extremely brave to keep going, keep fighting, and keep trying.

A whole coast away, I'm rooting for you.

(And you, even with all your hardships, will probably get your license before my slacker ass - so smile at that.)

Keep blogging babe, you have tons to say.


Braving the Arirang said...

hey Toya...thank you for your kind words. I think the struggle recently is that I never really ever thought of myself as "disabled" and this whole ordeal with the MVA kind of slapped me in the face like a wet noodle.

You don't have your license either? Good to know that someone else is faring well from the public transportation systems! haha!

I promise to keep blogging...I am not done writing all I can just yet. :-)

goosey said...

u know, when we first met, like all the first times when we hung out or when I saw u, I never noticed ur walk/leg. It wasn't until we went to NYC for PVD together & u started talking to me & bou about this surgery/experience, and then I was like, "huh?" So, as far as I'm concerned, u're not "disabled" cuz I know how tough u are!