A Subtle Pulse

Posted on May 7, 2007 by Jamieson Wolf

I am determined not to give up.

Cybill Paulsen, that evil twin, has quieted down some. Now it is only the subtle pulse that rests beneath my shoulders and my lower back. My Elephant Legs have returned to normal and now I am growing wings.

I can feel the feathers underneath the skin. I wonder if they will be large wings that will help me fly. Or will I still be earth bound?

I try deep breathing and counting to ease the pain in my shoulders. It doesn’t seem to work. I take a Motrin. It doesn’t work.

I know that if someone were to open my skin they would see a mass of knotted muscle. I wonder what else they would see.

I try rolling my arms to relieve the stress of muscle, try rolling my head and flexing my arms in hopes of dislodging the pulse that breathes when I do, that moves when I do.

It’s as if we’re dancing.

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Things Come In Threes

Posted on May 4, 2007 by Jamieson Wolf

I have been in pain for three days.

It started two days ago. Kisses along my legs like razor blades; Elephant Man legs. Walking to work hurt so much that I had to sit down when I got to the bus stop. I could not stand; there was no way my legs would support me.

Sitting on the ground, I felt the muscles begin to loosen slightly, only a little bit. I sat on the ground resisting the urge to cry. I haven’t felt that much pain in a very long time. Normally I’m able to ignore it, to push it away.

I couldn’t. Not even counting helped.

Going home, I barely made it. I could barely walk up the stairs to my apartment. I had to take it one step at a time, slowly making my way to the top when it looked so far away. I didn’t think I would make it, but I did, through sheer will and stubbornness.

I went to be thinking “At least that’s over. Tomrrow would be better.”

Yesterday was worse.

My leg muscles flared up almost as soon as I started walking for the bus stop. I couldn’t believe how quickly the pain came on, how fast the spasms started.

It seemed that Cybill Paulsen wanted to stop me from walking. I would not give him the satisfaction.

I got to work but my legs did not loosen this time. The spasms increased through out the day. During a conversation with one of my co-workers I had to stop talking. My back spasmed along with my legs.

The pain was sharp and jabbed at my right lower back. It hurt to breathe for what felt like years but I’m sure it was only seconds.

“Are you alright?” she asked.

“No.” I said. I had never said that out loud. “No, I’m not.”

She gave me some Motrin but it did no good. I took another two, and another two. The pain did not go away, it did not lessen. Nothing could quiet the twin who raged so loudly inside me.

Going home, I stopped to pick up chips at the corner store and had to walk up steps. I eyed them cautiously, warily. It seemed my life is defined in steps and yesterday I hated them with a passion.

I felt a tear form in the corner of my eye as my legs spasmed again and I wiped it away. I took the steps one at a time and hated them.

This morning, it was a replay. I felt my legs tensing, but today I wouldn’t give in. Today I would not think myself weak or give in and show any pain.

Today I did not sit at the bus stop. I stood, feeling my muscles tense and un-tense, clench and unclench. I stood firm, trying to count in my head, trying to count.

Today was not as bad, though I can still feel pain elsewhere. My jaw is sore from clenching, my feet and ankles are swollen. I feel as if I am a walking bruise and I do not like this feeling.

Already I can feel the muscles in my legs tingling, waiting.

I wonder what the walk home will bring.

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Pain Relief From Dance

Posted on May 2, 2007 by Jamieson Wolf

I can feel my muscles playing their music.

I know that Paulsen is dancing to their rhythm, that he’s moving and grooving inside my skin, inside the shell that is my body.

It makes me wish I knew how to dance; that I knew how to tango or tap dance or move to my own groove. Every time Paulsen would dance, I could fight him with fire, with my own dancing.

Although the idea of dancing in public every time a seisure comes upon me is enough to squeltch that idea.

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Walking for a Cure

Posted on May 2, 2007 by Jamieson Wolf

The Elephant Man has returned.

No matter how much I walk, no matter how much I stretch my legs, my muscles keep contracting, spasming. I wonder idly if The Elephant Man has joined a marathon or maybe a walk for cancer.

My legs have been bothering me so much lately. Even when I wear my Crocs, there is pain. It’s less, but there is pain. I can feel it humming beneath my skin.

I wonder if they will find a cure for disabilities. They are working on cures for cancer, cures for AIDS, cures for dementia, aging. Perhaps there will be a cure for this?

But then, I wonder, if I were cured, would I still be who I was? Or would not having Cerebral Palsy change me?

It’s food for thought at any rate.

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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.

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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.

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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.

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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.

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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.

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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.

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