Phantom Limb is Falling

Posted on May 29, 2007 by Jamieson Wolf

I have not been able to feel my right shoulder for three days.

I know it is there because it hurts. But there is a pain beneath the skin that obscures all else. It moves down my arm or down my back, depending on it’s will or desire and I wonder if maybe the muscle is rotting from the inside.

Motrin no longer takes the pain away and I wonder if they actually make anything stronger. I look at the pill bottle and wonder if I can go a pill or two over the reccomended daily dosage. I wonder how many pills it takes to make the pain stop.

I can’t feel my shoulder but I can certainly feel the spasms. Bright hot bursts of fire that lick at me; bite at me. I am so tired of their biting.

I count in my head, lest others hear me counting out loud and think I’m crazy.

1-2-3-4-5-6-7-6-5-4-3-2-1-2-3-4-5-6-7-6-5-4-3-2-1

I breathe iiiiiiinnnnn and ooooooouuuut and wonder what it’s all about. I do the hokey pokey and I turn myself around. Nothing seems to help.

It seems to be my burden to carry a phantom limb, this shoulder that throbs and knots it’s muscle. I wonder if it were to fall off, would I even notice?

Phantom limb is falling down, falling down, falling down. Phantom limb is falling down, my fair lady….

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Bundle of Nerves

Posted on May 24, 2007 by Jamieson Wolf

I woke a few minutes before my alarm clock this morning.

As I lay there, contemplating getting up and facing the day, I felt a tremor. At first, I thought it was an earth quake; it certainly felt like one.

My legs felt as if they were jiggling and wiggling to a vibe that came from the ground below me. It was a moment before I realized that it was just me.

I looked at Robert laying beside me, sleeping peacefully. My cat, Mave, was curled at the foot of the bed. Neither of them moved.

And I knew it was me.

There was no pain involved this time, no spasms that filled my body with jabs and jeers, but it felt wierd; as if my body were coming back to life again after a long, long sleep.

My legs looked stationairy, but I could feel the insides of the, the muscles, moving and shaking. As if they were afraid.

The sensation slid up my legs to my back and soon all of me shook and jiggled, moved and shook. I closed my eyes and imagined myself on a train, feeling the tracks moving beneath me; pictured myself rocking in a boat, the waves perhaps too strong.

And then it stopped.

The shaking was gone. I wondered for a moment what could have caused my body such fear, what could have made my body shake inside itself.

Perhaps it was afraid to take on the day.

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Remembering the Forgotten

Posted on May 23, 2007 by Jamieson Wolf

It is amazing what we teach ourselves to forget.

I knew that writing a memoir based off this blog would not be an easy thing to do. This is mostly because I knew the memoir would cover everything in my life; not just the fact that I have Cerebral Palsy.

I know for a fact that nothing in life is ever easy. This only inspires me to try harder, to try again and to try more. But I have never really tried to remember.

Writing the memoir has been slow going mostly because I knew that if I started writing, memories that I have tried so hard to forget would come to the surface again.

It’s not easy to welcome these memories back into my life. I forgot them for a reason, I closed them away in the hat box of my head for a purpose: so I could get on with my life and focus on the now instead of than.

But memories are pesky little things; they cry and moan and shake with indignation until you open your arms to them, until you notice them.

In writing my memoir, it’s amazing to remember what I had forgotten:

*The first time my father hit me.

*My mother trying to explain to me what Cerebral Palsy was.

*Hiding in a closet, hearing my father raging, looking for me, knowing he would find me and I would not like the outcome.

*Seeing my twin brother taken away by the police.

*The first night that I slept on the streets.

*Eating food in shelters and half way houses, grateful for the first meal I hadn’t had in days.

*Learning to walk without showing the pain in my face with each step I took.

*Dating girls because it was what was expected of me growing up.

*The last time I saw my brothers and sister, ten years ago, and how my younger brother Jeffrey was afraid to hug me, to come near me.

*The first time I kissed a man and knew it felt right to me, that I had found that piece of myself.

I feel as if I am going on an internal scavanger hunt, that I am hunting for pieces of myself, piling them in this large basket that is almost too big to hold on to.

And somehow I must place this all together. Somehow, I must take this puzzle of me and put the pieces together.

It is a mammoth task and I have always loved a challenge. But I never thought I would be up to the challenge of me.

The writing of Head Above Water (the working title…I can’t just keep calling it The Memoir. That makes it sound too grand) has been therapeutic but also gut wrenching.

I sat down this weekend to write and started balling at my computer as I was typing away. I am not normally an overly emotional person; but everything just came rushing back, slamming around the inside of my head.

If I close my eyes, I can see a mass of hands, waving like a field of poppies. Each is a memory and each is yelling the same thing:

Pick me, Pick ME, PICK ME.

Posted in Memoir, self esteem, The Past | 2 Comments

An Unwanted Lover

Posted on May 17, 2007 by Jamieson Wolf

I woke this morning with sharp pains in my legs.

The clock by our bed read 3:30AM. For a moment, I wondered what had woken me. Then I felt it; that hot, jabbing pain that crawled up my legs like vines.

I knew spasms were coming and tried to prepare myself, but they always grab hold of me no matter how hard I try to get ready, no matter how hard I mentally prepare myself.

I lay there, letting the spasms grab hold of my legs. It’s a hard feeling to describe. It’s almost as if someone has reached inside and stretched every muscle in my legs at once, as if I had been walking a thousands of miles and the pain had only now set in.

Or maybe it’s as if someone has twisted my legs quickly back and forth.

The pain, that hot flash, is the same every time. Each time I hope that the pain will ease, that it won’t be as bad as it was the last time.

Each time I am disappointed.

The pain is instantanious. I feel the spasm coming and then it is there, like an unwanted lover.

Like a parasite.

I breathe, breathe, breathe, counting until I get to twenty, twenty five, thirty. I never know how long the spasm will last. Lately, they have been lasting longer and longer, as if they do not want to leave me.

The pain of the quick spasms remains with me today. I can feel it in my legs and joints, my calf and thigh muscles.

And I wait for the next one to come upon me.

Posted in Spasms | 1 Comment

The Value of Words

Posted on May 16, 2007 by Jamieson Wolf

I am just beginning to learn the value of words.

Before writing this blog, I was under the impression that I have nothing of value to say. And so, instead, I made up stories.

Stories in far away places where magic was possible and where shadows fled from the light. Stories where anything could happen and often did.

When I started writing this blog, I figured that no one would really be moved by my own words, words that were spoken in my own voice. My own words are more difficult to write than stories; there is no fiction to hide behind and I cannot fool the reader with fragrant smoke and the subtle flash of mirrors.

As more and more people reacted to this blog, I realized that maybe my words did matter; maybe my own words did have a power all their own that. Power that went beyond the pull of a story.

I realised that the words here had the power to help, to heal and to let others know that they are not alone. It was quite a humbling epiphany.

But words have other powers too. The power to create beauty, the power to inspire. Or, in this case, the power to render me speechless.

I’ve been in talks with Scott Pack at The Friday Project, an incredible UK publisher. Scott liked my blog so much that I was asked to do a memoir based off the blog.

At first I thought it was like a dream. Me, write a memoir? Me, with nothing of value to say? The idea of me writing a memoir seemed funny at first, as if it were a big joke. But I had secretly always wanted to write one. A secret dream held close to my heart that I would never let into the world.

But the more I thought about it, the more I pondered, the more I started approaching the idea with a sense of awe. Finally, my words would mean something; finally my words would have value.

The idea of a memoir based off of this blog is a little frightening and I won’t pretend that it’s easy to write, but it’s liberating in a way. It’s humbling.

As are words I received from Scott Pack at The Friday Project. Yesturday, I received an email from him with the following words:

 Yes, the contract has arrived back. You are now officially a Friday Project author. Congratulations!

These words, above all else, hold so much value for me. And for the first time in a very long time, I was rendered speechless.

I didn’t make a sound, really. I just read the words over and over again wondering if Scott had any idea how much those words meant to me. How much value the words had, though they were so few.

Words that had rendered me mute, even for a moment, so that I could listen to my heart beat and the world around me.

And a dream, finally realized in words, taking shape within me.

Posted in Memoir | 8 Comments

A French Remedy

Posted on May 15, 2007 by Jamieson Wolf

I am continually surprised by people.

My legs have been getting worse. Some days now it hurts to walk with every step and stairs have become my enemy. I find myself dreading the moment I arrive home and have to climb up the forty stairs it takes to reach my apartment.

By the time I reach the top I am out of breath from trying to keep walking, forcing my body to do what it apparently does not want to do. It is the same each morning, going to work, where I can feel the muscles in my legs start to convulse almost the moment I am out of the door.

I have tried walking at a slower pace, walking faster. I have tried breathing exercises, counting, trying to convince myself that I cannot feel the pain. Nothing seems to be working.

This morning was no different. Walking through the market, I felt my leg muscles start to contract and expand, contract and expand. Each step was becoming more painful. I could already feel my shoulder muscles knotting together, absorbing the stress of trying to walk.

I took a breather in front of one of the market stalls. A vendor was setting up her plants and flowers for the day and she smiled at me. She was a large woman with bright blue eyes, curling blond hair and a happy smile.

The following conversation took place in French. While I can speak it, I can’t spell it to save my life, so forgive me if I massacre it to pieces. I’ll provide translation for those who don’t know French at all.

“Bonjour,” she said. Hello.

“Bonjour.” I replied, smiling as much as I could.

“Vous et malade?” she asked. Are you sick?

“Non,” I said. “J’ai un petit grippe dans mon jambre.” I said. My legs are sore.

“Oh,” she said. “Es-qu vous et boisson des Tylonol? Un cafe?” Do you want some Tylonol? A coffee? Here, she gestured to a thermos that I knew held her days supply of coffee. For her to offer some to me seemed like a blessing.

I shook my head and smiled at her. “Non, merci Madamme. Vous et tres gentil.” No, thank you, M’am. You are very generous.

“C’est rein, Monsieur.” It’s nothing. “Faite attention aujourd’hui et passe un belle journe Monsieur.” Be careful today and have a beautiful day, Sir.

“Et vous aussi, Madamme.” You too, M’am.

I walked away from her feeling better. Such a simple gesture, someone offering me her coffee or something to take away my pain, seemed wondrous.

That a stranger would reach out to me lifted my spirits greatly. That she would be concerned enough to inquire about my welfare seemed forigen. It says a lot about our society that I was so shocked and thrown off balance by such a brief exchange of words.

I don’t know if she will ever realize how much she did for me with her simple act of kindness.

It was only when I got to work that I noticed my legs didn’t hurt anymore.

Posted in People, Spasms, Walking | 9 Comments

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.

Posted in Spasms, swelling, Walking | Leave a comment

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.

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

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.

Posted in Muscles, Walking | Leave a comment