Doubtful Disability

Posted on March 29, 2007 by Jamieson Wolf

A co-worker asked me this morning why I take so much Tylenol.

I was at a loss. I didn’t know how to respond. I’m usually a private person when it comes to my difficulties, the twin that is inside me. I don’t like to bother others with something that wasn’t their fault, with something that is common place for me.

It’s not that I’m ashamed of having Cerebral Palsy. Quite the contrary. I think it has to do with the fact that I’m too proud. I don’t like admitting weakness or discomfort. I live with it every day, why bother others with it?

I took a truthful approach and told her that I had Cerebral Palsy. She looked at me bald faced and asked “What’s that?”

“It’s a physical disability where the brain affects the nerves in the body.” I was summarizing but didn’t feel like going into any explanation.

“But you’re not disabled.” she said.

I didn’t think I heard her correctly. “I’m sorry?”

“Well, you’re not slobbering or in a wheel chair are you?” She laughed at what she obviously thought was a joke. “C’mon,” she said. “Why do you really take so much Tylenol?”

I was taken aback. How does one respond to that? How does one reply to something which feels like a slap in the face?

So I said: “It’s true. I’m an addict.”

She laughed, thinking I was playing along with her, never realizing that, even as she laughed, I was putting up walls against her, one brick at a time.

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I am the Walrus

Posted on March 26, 2007 by Jamieson Wolf

My legs feel like toothpicks today.

It feels like I’m walking on a tightrope; my balance is off and I feel like my knees can’t bend. I know without lifting my pant legs that I have Elephant Legs today, that the Elephant has come back.

As a child, my parents would talk about the big pink elephant standing in the middle of a room that no one wanted to acknowledge. It was only later on in life that I learnt they were referring to an unspoken secret, something known but not talked about.

At the time, I thought they were talking about me.

I wore comfortable shoes today for all the good they are doing. With each step I take it’s as if I can feel everything under my feet; I can feel each stone, each crack in the road. I can feel a pebble stuck on the bottom of my shoe.

Each time I take a step, the muscles in the soles of my feet seem to reach out to touch the ground, embracing it and it’s crevices, sending licks of pain up to my calves which react with painful glee.

I have Elephant Legs today.

I am the Elephant Man.

I am the Walrus.

Koo-koo-ka-choo.

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At Home In My Skin

Posted on March 26, 2007 by Jamieson Wolf

I wonder if I will ever feel at home in my own body.

Most people undergo a time during their adolescence where their bones are too long, their lanky legs  and arms flailing and seemingly too long for their body. But over time, they grow into their body, they become comfortable in their own skin.

I have never been comfortable. When others were growing into their long arms and legs, I was learning to walk properly. When others were losing their buck teeth or having their braces removed, I was in physio therapy.

When others shed the unsightly gait and shuffle of a teenager, I was learning to walk while making my feet point straight.

It seems I have always been at odds with what is considered the norm, what is considered the ordinary. I am not ordinary, I am extra ordinary.

I wonder if I will ever achieve my teenage dream of being like everyone else, of having nothing that would mark me as something else.

But then the thought occurs to me: If I am just like everyone else, will I lose myself and become someone I don’t recognize?

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The Evil Twin

Posted on March 22, 2007 by Jamieson Wolf

I do actually have a twin. That’s what makes having a twin inside me so interesting; I do not talk to my real twin when my internal twin is all too talkative.

He has added to his repertoire. I sat down yesterday night, unable to get comfortable, my joints aching and legs spasming up a storm, or song, and looked at my feet.

They had become elephant feet.

The muscles in my ankles and my feet had swollen as if they were angry that I had made them walk at all. I knew it was the twin, this thing inside me that wants to control my body.

This was a new trick and not one that I take kindly to. I keep thinking there must be some way to trick him, this twin inside me; but I always come around to the same realization:

It is impossible to trick your own body.

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Musical Muscles

Posted on March 22, 2007 by Jamieson Wolf

It feels as if I have been in a marathon. Or perhaps been playing a hundred piece orchestra all on my own.

The past few days have not been ones of comfort. I have hardly been able to type, let alone find a comfortable position to situate myself in. My legs have been vibrating, the muscles under my skin unhappy with me for some reason I can’t name and have decided to wage war on my body.

My shoulders have been in sweet agony, my legs sore in the subtle silence of pain. I can feel the muscles move and shift and jive to a beat all their own. I picture a piece of music, ploughing through me in waves from my head to my toes. It hurts to walk, but being stubborn, I keep walking.

I had someone tell me that I should take it easy, that I shouldn’t push myself. My answer to this is to push myself further. What is pain if I can’t feel my legs because of it? What is a little ache if it goes numb?

In the past two days, I’ve had to double my concentration, to focus on not making those noises brought on by pain that I consider weakness, that I consider defeat. A co-worker asked if I was alright, if I was okay.

“I’m alright.” I said. “Just a little sore.”  

She could see the pain on my face.

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Laughing Diamonds

Posted on March 19, 2007 by Jamieson Wolf

Today, I am a bevy of nerves.

My muscles twitch underneath my skin, vibrating within their shell and I wonder if one day they will work themselves free.

The weekend was spent in almost total comfort, something that hasn’t happened in a long time. It may have helped that my mind was on other things: writing, reading a good book. But my repast was to last a short while.

Today I woke on shaky legs, trying to force my feet one in front fo the other, taking one step at a time. I felt needles biting my feet, sharp hungry teeth, snapping at me when I took a step.

Sometimes it feels like fire, soft little licks on the soles of my feet. Other days it feel like something, someone, is biting me there. Today it feel like I am walking on glass, those precarious diamonds that thirst for blood.

Every step today has been complimented by sharp pains in my leg joints. This is not Elephant Leg Pain, I am not the Elephant Man today. Today it is all about deep pain, something within the muscle that wants to work itself free so that it breathes the air around me.

I wonder if the twin is laughing at me?

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Dreaming of Myself

Posted on March 16, 2007 by Jamieson Wolf

I had a dream about him last night. He looked like me, this twin, except that he could walk properly. His feet didn’t turn in, his eyes looked straight ahead.

He didn’t have Elephant Legs.

“How can you be here?” I asked him.

“I am everywhere you are.” he replied. “You carry me with you.”

“But how come you are perfect and I am not?”

“Perfection is in the eye of the beholder. And there is no such thing as perfection.”

I woke at that point, the alarm going off beside the bed. My husband hit the snooze button and I rolled over to hug him, all the time wondering if I had conjured the twin by writing of him.

Are metaphors supposed to come to life? Do dreams have shreds of reality woven into their lining?

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Traveling by Blood

Posted on March 16, 2007 by Jamieson Wolf

The twin is active again.

The muscles in my legs have been moving and shifting. He seems to be taking up more space, conquering the inside of my body with a brute force.

I can feel my legs spasming and shaking and I wonder if I should have worn my new shoes to work. While they are comfortable, my feet always take a long time to adapt to new shoes as if they have to get to know them.

The twin punches me in the shoulders, a fierce pain flowing along my shoulders and my upper back. I count again, trying to picture something pleasant, something enjoyable, that is not related to the pain that flashes like lights under my skin.

1-2-3-4….

The pain there fades only to flow down to my lower back. I wonder if pain can travel through the bloodstream, flowing through my veins so that it can cause discomfort where it chooses.

This is a ridiculous notion, of course; it’s my muscles that spasm, that ache. But I find the image of pain having no shape, no body, slightly thrilling.

What if I could bleed pain out of my body and bottle it, closing the bottles away into a dark cupboard, never to be seen again?

What if wishes could come true?

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A Subtle Agony

Posted on March 14, 2007 by Jamieson Wolf

Today is a subtle agony.

 The air is damp with coming rain. My muscles seem to be more active during this kind of weather. My body is a forteller of weather; all I have to do is gague how much pain I’m in to figure out what it will be like outside.

With the dampness, my muscles have been protesting vocally all day. And not just my leg muscles or my back muscles. Every muscle is on high alert, waiting for something only they know is coming.

My shoulder blades feel like they are tight knots of flesh and my arms feel constricted. Pain shoots downt hem at the slightest movement and I wonder when the Motrin I took will kick in.

My legs are vibrating at full force today and the Elephant Legs have come back. Even though I can’t see them, I know they are there. I know that if I were to lift my pants up, they would stare back at me.

My back throbs to its own beat, not to be outdone by the rest of my muscles. I can feel a heat there as the throbs and pulses increase and I wonder again when the motrin will kick in. I’ve taken six so far today and nothing seems to help.

I think of the twin inside me and wonder what it must be like for him to be in so much pain. Perhaps, for him, everything is in reverse.

Maybe he is relaxed when something hurts, or he derives pleasure from it. I am not quite so adventurous but I wonder if, I had no pain, maybe he would be in a subtle agony instead of me.

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Breathe Deeply

Posted on March 13, 2007 by Jamieson Wolf

I can feel my fingers today.

Having the feeling back in them has been a bit like a revelation of sorts. I keep touching everything, knowing I can feel again. You don’t realise how much you need something until you don’t have it; but this is true of most things.

The twin inside me has moved down to my legs today. Though nothing near as bad as usual. There is a dull throb in my calf muscles that pulsates and I wonder, vaguely, if this twin inside me ever tires of tormenting the walls of my skin.

When I have less pain than usual (for there is always a little bit) it feels like I can breathe again. It feel as if I’m able to stand taller walk prouder. I know that the pain will resume, that it will come back stronger than before.

But during that time where there is little pain, I feel like I’m alive again.

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