Body Quake

As I lay in bed last night, I wondered if I was feeling an earth quake.

It felt like the ground was shaking underneath me. My shoulders and my back vibrated, my legs felt as if they were shaking and my arms felt like they were jelly.

When the sensation passed, I lay there for a moment before I realized that my husband had not moved. It had not been an earth quake; it had been my muscles. They had been shaking and quaking and didn’t need the Earth to quirk and shake to move of their own accord. When the body quake started again, I rode it out, trying to feel what I could, to embrace it instead of stiffening myself against it.

To fight it would bring more pain when it was finished.

So I chose to ride it through the second time and the third time. I could feel my muscles shaking into the mattress. I have never felt anything like before; the muscle spasms have always been centralized. One area at a time. Never before has everything shaken at once.

I am reminded of the great SanFansisco Earthquake, and the cracks that ran through the streets afterwards; great open spaces where streets were ripped apart.

I stop to wonder if now, after the body quake, there are cracks on the inside of me.

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Wheel Chair Dreaming

I dreamt I was in a wheel chair last night.

It was a sleek red metal that shone under the lights. Darkness was around me and I couldn’t see, but I could hear.

I tried pushing forward with my hands along the wheels, tried to move the contraption that held me in it’s arms.

I was jostled from side to side, moved, pushed, kicked.

Finally, someone tipped me out of the wheel chair and I landed hard on the ground. I know I made a sound, a soft sound of dismay and felt people walking on my hands. I could not feel them walking on my legs, though I knew they were.

When I awoke this morning, my legs were a mass of knotted muscle and my first thought upon waking was:

What if I could not walk?

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The Giving of Courage

I twirl the phone cord around my finger. I’m daydreaming when my mother’s voice brings me back to the conversation.

           

“They’re going to have her diagnosed.” My mother says.

           

“Who?” I know it’s smarter to ask this than to admit I may not have been listening.

           

“Willow.” She says. “Have you not been listening? They’re taking Willow in to be looked at.”

           

“What do they think it is?” I ask.

           

“They’re thinking its Cerebral Palsy.” She says. “She has all the signs. Even Megan thinks that what it might be.”

           

I felt my gut clench at those words. My niece is just over a year old. “Are they sure?”

           

“She’s arching backwards like you did as a child,” she says. “She’s having trouble with her flexibility. We can’t know anything for sure yet, but it looks like she may have it.” She says. “What you have.”

           

“But Megan didn’t have any problems with the birth did she?” A thought pops into my head that maybe, just maybe, they’re wrong, that Willow won’t have to live with this.

           

“No, there were no problems, but that doesn’t mean anything.” My mother tells me. “You know this.”

           

“Let me know if you hear anything?” I ask.

           

“I will,” she says.

           

We promise to talk later in the week and I hang up the phone feeling worried and restless.  I stare at the phone for a moment, thinking of Willow and how her life is about to change. She is no longer just a baby girl with bright shining eyes. She is a baby girl who has Cerebral Palsy.

           

Through out the day, I keep thinking of what it was like for me; growing up without knowing anything of what lived inside me. I thought of trying to learn more about my disability in a family that never spoke of things that were different.

           

I thought of always being told I was different, of always being singled out. I can only hope that she will be strong. It will take courage.

If she doesn’t have enough, I will give her some of mine.

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Glass Slippers

I wonder if I have glass on the soles of my feet.

I look at them, run my hands along the bottom; my feet feel normal. They feel alright, the skin of my feet rough from walking and day to day life. I feel for the glass and the hidden diamonds that are there, that I KNOW are there, but they don’t show themselves.

For two days now, my leg muscles have been in revolt and my feet have now joined the brigade. It is as if they have signed a petition, voicing their displeasure at having to walk me from point A to point B. When I walk, pain flares up my legs and at the bottoms of my feet and I wonder, vaguely, if I am wearing glass slippers. Perhaps the slippers have shards to dig into my feet, giving me better traction?

Whatever the reason for the pain, I keep walking. I try not to let it bother me, this cache of diamonds inside my skin, this twin that resides just below the surface of me.

I wonder why Cinderella thought glass slippers to be beautiful when, for me, they are quite painful.

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Thinking a Tune

Sharp pains are climbing up my legs like vines.

I can’t lift my feet properly today, it seems. Every time I go to take a step, I trip over my own feet. I try to remember what the therapist used to tell me (picture it, Jamie: Heel, toe, heel, toe) and feel like a drag queen contestant learning to walk in high heeled shoes.

It does no good. I keep tripping. I can feel the eyes of a co-worker looking at me as she walks behind me. I pay her no mind and keep walking, my right foot twisting on me. I stumble forward a bit and ignore it, I keep walking.

I feel like everyone is looking at my feet today, but I know that’s mostly my imagination. Walking back to my desk, I trip again, dress shoes scuffing against the thin gray carpet.

I can’t lift my feet properly, no matter how much I try today. If I force my feet to cooporate, my legs up the discomfort up a notch. The vines are knotting the muscles together, tightening them and even sitting, I know the Elephant Man is back, his Elephant Legs straining against the skin that holds them.

I let a song run through my head (today it is “I can see clearly now, the rain is gone. I can see all obstacles in my way, gone are the dark clouds that had me down…it’s going to be a bright, bright, bright sun shiny day…”) to take my focus away from the jabs that feel like hot kisses on my legs.

I get so tired of counting sometimes.  

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Embarassing City

Today, while shopping, I had to sit for a moment.

I had just finished grocery shopping and went to leave the store when I looked at the long flight of stairs that I had to climb up to get out. Normally, people don’t fear stairs too much. But to me, they are an exercises in pain.

My muscles don’t like being forced to carry me up steep steps. They’d much rather I stay firmly on the ground. I have enough trouble walking; I must be crazy to climb stairs. But climb I must. I’ve never been one to turn down a challenge. Seeing that I face challenges of every sort, each and every day, I’m not bothered by this.

I hold on to my bags of groceries, a few bags in each hand.  I know I’ll need the bags to balance me as I am momentarily vulnerable to my muscles while climbing. I put one foot in front of the other, one step at a time as it were, forcing my legs to work with the rest of my body. I’m not sweating when I get to the top but I’m sore.

I walk outside and feel sharp, jabbing pains in my feet and calves. Elephant Legs have come to bless me, gracing my calves with their swollen presence. I take small, shuffling steps to a concrete block that used to house a garden and I sit, knowing that even as I do so, the muscles will knot together.

But I also know I can’t keep walking; it hurts too much. I begin to count.

1-2-3-4-5-6-7-8-9-10-11….

 I know that I’ve been sitting there for some time, breathing deeply. And not once has someone stopped to see if I was okay. Not that I would have wanted that; how would I explain what was wrong? No, sometimes it’s best to be left alone.

Sometimes I’m thankful that I live in a busy city where people are living too quickly to notice anyone else around them. It saves me from embarassing myself.

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Waiting for Paulsen

This weekend has been a pain in the ass.

Literally.

I woke Saturday with a sharp pain in my lower back. This pain saw fit to move down to my rear end. It hurt to sit, it hurt to lie down. I just couldn’t win either way, really. Most of the time I feel like I’m fighting my own body and never coming close to winning the war.

The pain moved into my upper legs so that, very soon, it hurt to walk too. I could feel the tightness of my limbs as I moved and walked. Someone asked me the other day what Cerebral Palsy felt like. The only thing I can think of to compare it to is being out in a storm for a day and then living with the after effects.

Your body is sore, tired and feels as if it might break in two. Mostly it’s the frustration that bothers me. The frustration at having to fight something every day, at having to battle myself in order to take another step. Some days it pisses me off.

But I’m stubborn so I try not to let this bother me. I try to focus on the positive things: I have a wonderful husband. I have a fantastic family. I have a good job.

But on the outskirts of that, always waiting in the wings, is that twin. Cybil Paulsen waits patiently; perhaps his fingers are crossed, his hands clasped together in his lap. “Just keep going,” he says. “I’ll be here. I can wait.”

He’s always waiting.

For what, I can only guess. Mayhap he’ll find other things to do while I ignore him. A jab here, a pain in my shoulders, a stab in my legs, throbbing pain in my calves. Sometimes I wonder if I’m not the one who is always waiting; for the pain to come.

And so I wait for Palusen, like those before me waited for Godot, and wonder what will happen.

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An Indirect Gift

I’m pretty sure that my stubbornness has a lot to do with proving my father wrong.

Growing up, he expected perfection. As I was born with an imperfection, I ws never worthy of love in his eyes. It took me a few years to realize this, to come to the conclusion that perhaps he was never capable of love; but at the time, I wanted to prove him wrong, to show him that I was perfect, that I was worthy.

Pain was a constant back that as I hadn’t learnt a lot of ways to deal with it. I wasn’t allowed to take aspirin or Tylenol, I wasn’t allowed to do my exercises. I had only begun to write little stories, nothing that I could escape into. And my art was a far cry into the future.

So pain became an intimate friend.

When I would walk with my feet turning in, he could kick them, nudge them, telling me to stop walking like a damn cripple, how could he be a proud man with a cripple for a son?

I would respond by saying something along the lines of: “How can I be proud of a father who hates me?” I would usually be reprimanded for this.

In school, hoping to win his favour, I would run in the marathons, running circle after circle around a track, hoping to prove how strong I was. I would run these marathons knowing that, by the end of it, I wouldn’t be able to walk very fast, my Elephant Legs puffing up, muscles knotting.

I would join in the physical fitness programs, you know the kind. Where you would be tested on how far you could run, how far you could jump, how far you could climb. Exercise after exercise of torture and all you would win for your effort was a badge of a different colour: A gold bade, a silver badge, a bronze badge.

If you were horrible, as I was, you would get a card congratulating you on participating. Bastards.

But still I participated, in hopes of winning my fathers love. In the end, he would just drop my participation card and ask me why I didn’t win a badge like my brother did? He would inform me that it was because they didn’t give badges to cripples.

It was then that I resolved not to be a cripple. I wouldn’t be a victim, I wouldn’t be someone who was downtrodden. I would be me, my own person. I’m pretty sure that, all those years ago, that moment was where I finally started to come into my own.

Indirectly, my father gave me the greatest gift I could have ever received.

He showed me how not to be like him.

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Growing Wings

I feel like I am growing wings.

Surely this is what it must feel like: shoulder muscles moving and shifting under my skin, pulses that push at the skin that holds them back. A deep throb at my shoulder blades where I can picture wings with iridescently feathers sprouting forth.

My shoulders are like rocks today. Each time I move my arms, my shoulders respond with another deep throb, another tattoo of rythm. I can feel them move even when I am sitting still, the muscles dancing today, asprin having no effect on them.

That’s the trouble with muscles; most times, they won’t listen.

I picture my wings, full and feathery and light and wonder if I will fly to work tomorrow morning using the wings that have sprouted over night. I take a sip of coffee with two more Tylenol and hope that, this time, the wings will remain quiet and underneath the skin.

I am already enough of a freak being an Elephant Man. I don’t want my wings to add insult to injury.

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Cybil

The twin inside me is always active. He seems to want a life of his own.  I wonder, vaguely, if I should give him a name. But I’m a firm believer that if you give something a name, you give it power.

But he already has power over me, so what harm could a name do? The giving of a name is never an easy task, but for some reason the name that pops into my head is Cybil. I immediately think of Sally Field playing Sybil, the woman who had thirteen different personalities, and this seems to fit.

For do I not have someone else inside me too?

I often wonder why I look at my disability as someone else, the twin. I think it has to do with detaching myself from it, taking a different view of it.

Instead of something that has no name or face, I’m able to visualize something when I rage against my body.

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