Uncomfortable Fruit

Posted on April 30, 2007 by Jamieson Wolf

This weekend was not pleasant.

 I spent Saturday helping my husband at a business EXPO and my body made sure I paid for it afterwards. After five hours of standing and sitting and talking to people, all I wanted was for my body to be quiet, even for a half hour.

This did not happen.

My leg muscles started part way in to the day and I knew my body was not finished. My back and shoulders were spasming by mid afternoon and by the time we left, I was in a subtle agony; it seems to be a state that I keep coming back to, revisiting even though I do not miss it when it’s gone.

Perhaps Cerebral Palsy is like the family member you wish would go away? The aunt you see on a daily basis who you wish would leave you be and stop pinching your damn cheeks.

Yesterday was painful. I could barely walk. Robert and I went to the market to get fruit and some groceries. I could barely walk up the stairs. I had to take them one at a time, pushing with everything I had to get up that step. And the next step. And the next.

One step at a time.

Walking back home, my legs felt like stone and I wasn’t sure I was going to make it. I did, of course. I always do.

I just wish it wasn’t so damn uncomfortable.

Posted in Muscles, Spasms, swelling, Walking | Leave a comment

Dancing Standing Still

Posted on April 27, 2007 by Jamieson Wolf

During the past few days, my legs have been trying to dance without moving.

At least this is what it feels like. As if my legs have moved and shook and jived all over the place when I wasn’t looking. What else could account for the fact that they are so sore?

The twin walks at night when I am asleep. I try to tell myself that tomorrow will be different, that tomorrow I will wake up without sharp jabs in my legs, my back, my shoulders. That he can’t possibly walk every night.

I tell myself that the sun will come out tomorrow.

When I wake and find that the sun has indeed come out but the pain is still there, I figure one out of two isn’t bad.

I head towards the coffee pot and wonder if six thirty in the morning is too early for aspirin.

They leave a bitter taste on my tongue as I wash them down with coffee. I seem to be building up an immunity to aspirins, Tylenol, Motrin IB. Nothing takes the pain away like it used to.

Now it only numbs the pain so I can keep dancing, even as I stand still.

Posted in Muscles, Spasms, swelling, Walking | Leave a comment

Rhyming Diversion

Posted on April 27, 2007 by Jamieson Wolf

I feel like I am wearing a different skin than normal.

It feels like my body is stretching inside, trying to fit itself into another shape, to move and twist and turn myself into someone else.

My shoulders and my upper back are spasming so much, I can feel the muscles moving like a twitch, a tick, a metronome beneath my skin.

My arms have gone numb. They feel like phantom limbs. I know they are there as I am typing, but I can’t feel them. My back is a roadway of twisted muscle and I wonder what can possibly soothe it.

I breathe deeply as I count.

1-2-3-4-5-6-7-8-9-10-11

I recite rhymes in my head; nursery rhymes and dirty limericks to keep my mind off the pain. I don’t want to cry out and draw attention to myself. That would be embarrassing.

And why is it someone asks if you are alright when it is very clear you are not? I recite a rhyme in my head to avoid useless questions:

–the rain in Spain lies mainly on the plain…

But the pain lies underneath the rhyme.

Posted in Muscles, People, Spasms | Leave a comment

Flare Up, Get Up

Posted on April 23, 2007 by Jamieson Wolf

I had a flare up last night.

I climbed under the covers, the fan cool on my face, and had to get up for something or other. When I stood, I had to sit back down again.

Without warning, the muscles in my legs ignited. My calf muscles immediately went rock hard, the muscles spasming. The Elephant Man had returned and I was his suitor.

I tried getting up again and this time I was able to. But at a price. Pain flashed in my lower back and my upper and lower legs. I could feel the muscles moving under my skin.

Sometimes I feel as if my body is made up of tectonic plates; great slabs that move and shift of their own accord under the surface.

You can’t see them, but you know they are there, moving and shifting as time moves on.

I know that my body is a road-map, roadways marked with scars and tourist stops marked by marks on my body. But I wish that I could sight see without the occasional earth quake.

Posted in Muscles, Spasms | Leave a comment

Daily Meditation

Posted on April 22, 2007 by Jamieson Wolf

There are benefits to meditation. It can help me ignore the spasms.

My counting is a form of meditation. I count so I can work myself through the spasm, through the pain. There are other forms of meditation too.

My writing is one, my art another. Putting my words down on paper or my emotions on to a canvass are a way to channel what is inside me.

Sometimes, though, meditation is not enough. Try as I might, I can’t find a sure fire way to live one day without a spasm, to live one day without a sharp jab of pain in my lower back or my shoulder.

Part of me, that part that imagines Cybill Paulsen, wonders if this is a disease or a curse. Another part of me knows that without the disability, I would not be half the person I am right now.

I find it interesting to think that pain would make me a better person, a more giving one. I find it funny to think that having Cerebral Palsy could give me a better understanding of the fraility of the human body.

But it does. And I meditate on this daily.

Posted in Muscles, People, Spasms | Leave a comment

Inside Out

Posted on April 22, 2007 by Jamieson Wolf

Cerebral Palsy, I think, helps me keep in mind how quickly things can change.

 We came back from dinner last night. It’s warm here, spring finally showing her colours to the world. The night was a gorgeous melee of people and I came home content. But almost as soon as we got in the door, my right hand went numb.

I tried to relax and let my body ride out the spasm, but it just seemed to get worse. My entire right side, shoulder, arm and leg, felt numb. I could feel pain trying to creep in and up my leg, my feet spasming softly, almost throbbing.

“What’s wrong?” My husband asks.

“My hand,” I say. “It’s numb again.” I climb in to bed and ask him to feel my muscles, to see if they’re tight.

He pokes my shoulder for a moment before he says “No, you feel fine to me.”

It strikes me than that this is a very private disability. That on the outside, everything can appear normal, but on the inside, that is where I carry my real scars.

Posted in Muscles, Spasms | Leave a comment

Thirsty Thoughts

Posted on April 17, 2007 by Jamieson Wolf

It’s odd, really.

Writing all this out has given me a better perspective of myself.

I got an email from one of my friends the other day after he read a couple posts from this blog; he said that he would never be able to put himself out into the world like I do.

That thought has stayed with me for a few days now.

I pictured myself from years gone by; a shy, quiet boy (believe me, it’s true), afraid of himself and everything around him. Especially what was inside him. I remember hiding it like a filthy secret, dirty laundry to be eaten or hidden at the bottom of a dark closet.

And I think of myself now, of how much I’ve grown. I wonder, as I have before, what my life would have been like if I hadn’t been born with a disability. If Cybill Palusen was not my constant companion.

I know that I am typing these words, these thirsty thoughts that drink from my blood, mostly for myself but also for others out there who live like I do with a disability.

Every post here is painful for me, but it is also a release.

By telling others, by writing down my thoughts, another small part of me is set free.

Posted in self esteem, Spasms, swelling | Leave a comment

Walking on Broken Glass

Posted on April 17, 2007 by Jamieson Wolf

I feel as if the twin is littering the ground with shards of glass.

I can see him, visualize him, scattering pieces of glass around him as if they were flower petals. Each time I take a step, I can almost hear the crunch of glass underneath my feet.

Walking is a chore today. Cybill Paulsen wears the garb of the Elephant today; I don’t feel comfortable in my own body and I know he is trying to push me out.

My feet feel like they are on fire as I walk today, a pain that licks the bottoms of my feet like a lover. I can feel my Elephant Legs showing themselves, peeling away my skin until they are free and I am not.

The muscles are tightening and tightening and I can feel them rising up with each step.

The wind sounds like the Twin laughing.

All this makes me want to do is keep walking, just to spite him. Regardless of the pain, I must keep walking. Regardless of how much it hurts, I will keep walking.

I count in my head as I move through the day, a litany, a tattoo, a prayer:

One-Step-Two-Step-Three-Step-Four

Five-Step-Six-Step-Seven-Step-More

I pretend I am skipping and thumb my nose at the twin, even though I know he will be angry at me.

Posted in Muscles, swelling, Walking | Leave a comment

Blissful Pain

Posted on April 16, 2007 by Jamieson Wolf

Last night in bed my body was making it’s own music.

I lay there, feeling my legs throb to their own beat and my feet would respond. The pain would flare up in my feet like fire and, though painful, the music was blissful.

I started to count to the rhythm. 1–2–3–4—-

I could feel my muscles clenching and felt as if my legs would come off my body. They clenched and I could feel my muscles mold themselves to my leg bones, my feet.

It felt like the world was quivering and I was powerless to stop it.

I continued to count well into the night, thinking of other things: why is the sky blue? Do cows drink milk? Can pain be beneficial?

All the while, the twin was laughing at me.

Bastard.

Posted in Muscles, Spasms | Leave a comment

Double Life

Posted on April 13, 2007 by Jamieson Wolf

Sometimes I feel like I’m like I’m living a double life.

 It’s as if I have a secret inside of me. Because I will not let it out, it causes havoc inside my body.

I am not actually very open about my disability. The main reason for this is the reaction I get from most people. The moment I tell them I have Cerebral Palsy, they begin to treat me differently, as if I was fragile or an endangered species.

It’s happened so many times before. I watch their faces as realization comes after my words and then the light in their eyes becomes guarded, unsure. Then their words are kinder to me and they speak in a softer tone, as if I am old and feeble

I’m not really sure why this is. They may think they are doing me a kindness, but really it is just ostracising me all the more.

I sometimes feel it would be better if I put my head in the sand like an ostrich and let the world pass me by in a series of vibrations and tectonic plates.

But then I would miss everything that is moving around me. And dirt would be so horribly boring after a while.

So I guard my secret until the next time it works itself free.

And someone else begins to treat me differently even though we’re the same.

Posted in People | Leave a comment