1/19/98

For the last two and a half years of my life, everything about me has been based off of numbers, percentages and statistics. 1/19/98, 16 years old, Female, Transverse Myelitis, complete paraplegic, that’s how I’m remembered, or at least in the medical world..

The statistic of – 1/3 with Transverse Myelitis recover practically, 1/3 completely recover, and the remaining 1/3 show no recovery at all.
That’s what I would get told if I asked if I’d ever walk again.

My parents, doctors, physical therapists, the nurses and neurologists, or really anyone for that matter, would all have this look, that they didn’t know if I’d ever walk again..
At 14 years old, I just wanted reassurance but they unfortunately couldn’t give it to me.

Or the statement that still chokes me up every single time.
– “Generally, people who experience a rapid onset of signs and symptoms have a worse prognosis than those with relatively slower onset.”
My onset was in 5 minutes..

1 minute I was hurting, 1 minute I was in a ball shaking thinking “I’m pretty certain I am dying” 1 minute I was walking and the next I wasn’t. The thing I spent my first 3 years of my life working to master, was gone. Just like that.
I couldn’t move my legs, I couldn’t feel them, and I couldn’t walk.
And that was the last time I could, the last time I could stand without thought, the last time I could feel my hand against my thighs, the last time I could dance freely, the last time I could just simply jump out of bed, it was the last time I was innocent, the last time I had no worry.

February 2nd, 2012.. 7:15 AM was the last time I thought I was untouchable.
Who really remembers what they ate, what they said to their family, what they watched on TV, how they smelled, what they wore and what they thought of from over 2 years ago?

I remember it all too well, the look my twin brother gave me, I remember he was just as confused as I was.
I remember him sitting next to me on the freezing bathroom floor holding me up. I couldn’t sit up anymore. How could that have happened to me?
All I remember thinking was I had to keep my eyes open, and if I closed them, it could have been the end.
And I didn’t want it to end. I was only 14 years old!!
I hadn’t really lived yet, I hadn’t loved and I hadn’t even graduated the 8th grade.
I remember my dad frantically running away from me to call my mom. I will always remember the crack in his voice, as he told my mom that I couldn’t walk.
I remember the car ride so very well, I looked at myself in the mirror and I don’t really remember what I thought.
I wish I could of told myself “hold on, it’s gonna be a rough ride”
I also, remember my dad running through the house trying to find his keys, I remember him running down the stairs and jumping into his truck and going as fast as he possibly could go, to get me to the hospital.

I remember it being silent. You could hear a pin drop.
I remember very clearly, my dad telling the lady in the emergency room, “she can’t walk, she can’t move her legs anymore! Do something!”
I remember throwing up, I remember being calm from spinal shock I believe.
I still kept telling myself that I really had to keep my eyes open, and every single time I’d almost fall asleep I’d wake myself right back up again.

And from that day on, I became a number, a date, a barcode, a statistic, and a percentage.

I know that I seem kind of unlucky.
I know I’m looked at as a “sad story”
I know I’m looked at the unlucky one who didn’t get a recovery like she wanted.
I’m looked at as someone who doesn’t get a break, who is different, who goes by her own books.

And that’s why I know I’m not a number, a barcode, I’m not. I’m a person. I’m not a disease, disorder, a syndrome or whatever you want to call it.

I’m not my birth date, I’m not my age, I’m not my weight, or the color of my hair. I’m all the books I read, all the words I speak, I am my smile, I am the small dimple in my left cheek, I’m the sweetness in my laughter and I’m the songs I sing so loudly and proudly, I’m the places I’ve been to and the one I call home, I’m  all the things I believe in, I’m the people I love, I’m the pictures in my room, and I am the future I dream of.
I’m not Transverse Myelitis.
I only have Transverse Myelitis, but it doesn’t have me..
I am not what you see, I’m not my scars, I’m not a wheelchair, I’m not a diagnosis, I’m Alex and I’m not part of a 1/3rd, I’m not just a name in a computer, I’m not just a patient, I’m not just a student, I’m not just another sad story.

I’m Alex and my story isn’t sad, it’s beautiful.

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Dreaming.

I go to sleep excited, every night in hopes maybe I’ll dream that I’m dancing, running, jumping, skipping, laughing, on a beach perhaps.

Sand between my toes, cool water on my arms, warm sun on my back, slight breeze on my legs.
No worries, just the sound of the waves crashing against the shore.

When people say you don’t realize what you have until it’s gone, I never knew what that truly meant. But now I really really do.
You live your life thinking it will go one way.
You plan and you prepare.
Because really, who thinks anything bad happens to THEM? Bad things only happen to other people, on TV, on the news, in the newspaper, but never to you.
But then all of a sudden.. YOU are the “other people” you are the story on TV. Your story is on the news, and you’re in the paper.. Then you realize bad things do happen.. everyday, to anyone, it doesn’t matter who you may be, how old you are, what you look like, if you are rich or poor, or how smart you are. It really doesn’t matter.
I knew people got sick, I knew people were in wheelchairs, I knew. But why would I ever be one of them?

I was always safe, I wore my seat belt, my helmet, I looked both ways when I crossed the street, I was always the careful one in my family. I was the healthiest, I was the innocent, carefree, “in her own world” kinda girl.

I was untouchable.

So I thought..

I was walking one day, then the next I wasn’t. It’s that simple.

I went from hurting thinking it was the flu to being paralyzed within minutes.
When that happens.. What do you do? How are you supposed to live? How are you supposed to have kids? Live alone? How are you supposed to live without your legs? How do you get by when half of you is always missing? This isn’t how my life was supposed to go, I was untouchable, right?

If I could live my life over, I wouldn’t change that I was so unaware, I wouldn’t change that I was innocent, I would not change a single thing. No one can take away the dances I’ve already had.

But now since I AM aware, I can only make everyone else aware too.

So here’s the only advice I really have for you,
Dance, dance until your legs hurt.
Run, run for those who can’t.
Love, love with every ounce of your being.
Laugh, laugh so hard you can’t breathe, laugh until you cry.
Don’t be too serious, I mean..No one gets out alive anyways.
Go on vacations, you can always make money, you can’t always make memories.
Don’t forget.. Kindness is free.
No matter how you feel, get up. Dress up. Show up. And never give up.

NOTHING EVER happens how you imagine it will.
And whatever is good for your soul? Do that.
Even if it is just dreaming.

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