A Title and a Sigh of Relief

I did not sleep at all last night.

I sent Scott what I had written of my memoir and the moment I hit send, my belly was a mess of nerves, a hot bowl of anxiety soup.

The internal voices started again, all of them talking at once. Even though they were a mass of words, I had heard this mantra before:

Would he like it? Would he expect there to be more written by now? Would they pull out of the contract? Would they refuse to publish it because it was so awful?

These may seem like very irrational fears, but I think to a writer they are just normal thoughts of self-doubt.

I didn’t sleep very well last night. I had nightmares. I don’t really rememer what they were except one part of the dream where I was wearing a ballet outfit and being called a whore.

I woke and went to work, my belly still a mass of wasps and blackflies. And then I checked my email. There was an email from Scott and he gave me relief; he killed my fears and made me feel so much better:

I have just read through all of this and I think it is remarkable stuff, really very powerful and moving….This really is a fine piece of work and you should feel proud of your ability to put this into words.

I was able to breathe again, to take in deep breaths and feel the air puffing out my lungs. Beautiful, gorgeous air that tasted of success.

But he also gave me something else:

I personally still feel that One Step At A Time is your best title.  The footsteps image appears frequently through the book and it has so many connotations with CP, with the life journey etc. that it really feels right to me…..

And so my nameless journey has a name.

And I can breathe again….

Posted in Memoir | 1 Comment

Oh. Crap.

My publisher, the lovely Scott Pack from The Friday Project, asked to see what I had written of my memoir.

Oh. Crap.

What if he doesn’t like it?

This is my ultimate fear, I think.

Posted in Memoir | Leave a comment

The Counting Stone

The Elephant Man has returned.

I got a ride home from work last night. From Elgin Street, I walked to Confederation Park. I knew the spasms were coming; I felt them riding in my friends car, a subtle throb that started near my left thigh and moved it’s way down to my knees.

I got out of the car and with each step I took, I could feel the stone pouring into my leg. With each step, I can feel the muscles in my leg knot themselves, filling up with worry knots, with sailors knots.

I force myself to keep walking, to make my way through Confederation Park, to climb those thirty stairs that feel more like sixty. With each step, it’s getting harder and harder to keep walking, to keep moving.

By the time I reach the top of the stairs, I’m almost out of breath from the exertion. My leg feels hard now, as if I’m dragging it behind me. I take a step and stumble over my foot, tripping forward.

I bump into a couple, a man and a woman. The man pushes me back, tells me to fuck off and watch where I’m going. I apologize, feeling my cheeks go red, a hot patch of blood on my cheeks.

I keep thinking to myself: if he only knew, if they only knew, if she only knew.

My entire leg is in pain now; the calf muscles have started their own slow throb as if my theigh and my calf are communicating in a painful morose code. I force myself to keep walking but only make it as far as the first chair that I see.

I sit greatfully into the cold metal chair, bending down to knead my calf muscles, to try and work some sort of feeling other than hurt back into them.

The effort to keep the pain at bay, to ignore it, is exhausting. I can feel it in my stomach, so hot that it makes me want to vomit.

For a while, I think I am going to be sick, but I concentrate, I breathe and I count. Graceful soft counting where I picture the words writing themselves in the air.

one two three 123 one two three 123 one two three 123

one two three 123 one two three 123 one two three 123

I can taste the pain on my tongue, heavy and bitter. It tastes like pennies and I breathe in and out, in and out so that I will not cry.

I wait, counting to myself; I wait for the stone to subside, for it to leak out of my leg and pour itself onto the floor. I try to visualize it leaving my leg so that it does not feel so heavy, so weighted.

So I can face the walk home.

I get up and start walking, knowing that I have another ten or fifteen minutes to walk until I reach the sanctuary of my apartment, of my husbands arms.

But as soon as I start walking, putting one foot in front of another, the muscles start again, hardening and morphing into elephant legs, into heavy stone that drags behind me. I wipe a tear that begins to slide down my cheek and strenghten my resolve, try to reach down inside me and find that piece of myself that is the glue of me.

I will not shatter in front of strangers.

I walk through the Byward Market, looking at everything around myself from what I carry with me. To distract my mind so that it does not taste that taste of pennies and sweat at the back of my throat.

By the time I get home, I am limping and tripping over my feet. I can’t feel my leg, my entire leg and the spasms have never been this bad. I see my mother when I get to the driveway and it occurs to me that I am embarassed for her to see me this way.

My Mum and Dad recently moved into the apartment below us. It had never occured to me before that they would see me this way, that I would want to hide part of myself from them.

I know feeling embarassed in front of my mother is a silly, stubborn excuse for an emotion. But there it was. Robert was waiting for me at the top of the stairs. Those thirty stairs that felt like hundreds, that felt like a mountain.

I could feel my mothers eyes on me as I climbed the stairs, using the railing to push up with my arm when I had to take a step with my left leg.

“Are you in pain?” Robert asked.

“Yes.” It killed me to admit this in front of my mother. I don’t know why, but there it is. The truth seldom makes sense, even to those who created it.

“I can tell by the way you’re walking.” Robert said.

I got to the top of the stairs, tears trying to push their way out from behind my eyes. Sweat was pouring off my forehead and I could feel it building under my shirt.

My mother spoke from her balcony. “I love you, Baby Boy.” She said.

I smiled, no longer embarassed. “I love you too.”

I went inside to seek shelter from the storm and a cold glass of something liquid so that I could wash away the taste of pennies.

Posted in Memoir, Spasms, swelling, Walking | 4 Comments

The Dark Mark

I had my first year wedding anniversary on Saturday.

I can’t believe it’s been a year that I’ve been married. I also can’t believe that Robert and I have been together for almost three years. It seems like a few months.

Something occurred to me yesterday while I was still basking in the glow of the newly married: I no longer consider myself a freak.

There was a time, not so long ago, where I felt my having Cerebral Palsy branded me with a mark others could see; a mark that said: Dangerous Waters, Careful All Who Tred Here.

Sometimes I felt as it were a large neon sign that flashed above my head in seductive reds and yellows; maybe a bright flash of blue or gold. Always drawing attention to the fact that something about me just wasn’t right.

While I still have issue with my self-esteem (who doesn’t nowadays) it’s been a long time since I’ve felt marked by my disability.

I also realized yesterday that most of this has to do with my husband. He was the first significant other who saw just me, only me. Not “Jamieson who has Cerebral Palsy” or “Jamieson with the Gimpy Legs” or “Jamieson with the Lazy Eye”.

I am not freakish. But instead freakishly beautiful.

Robert sees only Jamieson. He sees only me.

And finally, I am able to see myself.

Posted in self esteem, The Past | Leave a comment

Snake In My Path

I’ve come to think of pain as a snake.

My shoulder is still sore, still spasming, still convulsing under my skin. It beats as if a heart rests there, as if it is something alive. Which, in a way, it is.

The pain begins to slither down my arm, wrapping itself around my shoulder, my upper arm, my elbow, my forearm. I can feel it squeezing, pinching, trying to cut off the circulation of blood.

Counting no longer seems to work when trying to breathe past the pain. So instead, I imagine I am somewhere else, somewhere where the pain cannot get me:

…..I am in a forest. The trees around me are dense and dark but sunlight shines through in patches. The light makes the grass seem like jewels in the shadow and I tred carefully so as not to trip or fall on rocks that may be in my path.

I hear a rustle in the bushes and stop. I hear nothing now but the sound of my breathing and water in the distance. I look down at my normal legs, long and relaxed, no elephant legs here, no sir.

I take another step forward and hear the rustle of leaves again. I stop and watch as a snake slithers across my path. I wonder if it is bad luck to cross a path after a snake has crossed; if they share the same urban legend that black cats do.

Deciding to forge ahead I take a step forward just as the snake lunges for me, sinking it’s teeth into my…….

Foot.

The pain has woven itself to other parts of my body and I can feel my feet spasming inside my shoes, the muscles jerking in time to my heartbeat.

I sigh and wonder how much pain the walk home will cause me.

Posted in Muscles, Spasms, swelling | Leave a comment

A Heart That Is His

Over the weekend, my husband read what I had written of my memoir thus far.

From the time he asked if he could read it to the time he was done and I heard him step away from his computer, I wondered: will he like it? Will the words be powerful enough? Will he view me differently after reading what I had written?

These were all silly fears as the answers are obviously: Yes, yes, no. But a writer has fears no matter who is reading their work, no matter who is giving their opinion.

He hugged me after he read what I had written and he was shaking with anger. “It’s not that I didn’t want to read it.” he said. “It’s that I knew how angry I would be if I did.”

He pulled closer to him and said: “I don’t know how you came out so normal after what you’ve been through.”

“I chose too.” I said. “Everyone keeps telling me that I must be so angry, that I must be filled with such hatred. I can’t live that way and move on with my life, so I choose to forgive and live.”

We didn’t say much about it after that. But he had read it and still loved me and values me. That is more than enough.

I gave him my heart and he holds it like a treasured object. My heart beats for him and I could not imagine my life without him in it.

He has my heart, it is his. But more importantly, we belong to each other. We belong together. And in him I have found something I’ve searched my entire life for.

To belong.

Posted in Memoir | Leave a comment

The Language of Pain

The Twin is back.

I knew he would not be able to stay away for long, that his quietness would eventually end. I did not expect it to be quite so painful.

I have had trouble walking all weekend. Almost from the moment I would start walking, my legs muscles would begin to harden, to seize up and form themselves into Elephant Man legs.

Hot licks of pain flash across the bottoms of my feet with each step I take. I can feel my feet swelling, my ankles twice their normal size. Even as I type this I can feel throbs of pain stabbing in my right shoulder which still is not right.

I wondered the other day whether or not my body was using pain to talk to me; whether or not pain was the only language that my body could communicate in.

I wondered whether my body was trying to tell me something and that, if I put the puzzle pieces together, I could understand what it was trying to tell me.

I ponder this as I take a Motrin and try to count through the pain.

1-2-3-4-5, breathe in, 1-2-3-4-5, breathe out.

Perhaps the cure for pain can be found in the beauty of breathing and contemplate my legs, hard as stone and knotted like tree trunks.

Posted in Muscles, Spasms, swelling | Leave a comment

Who Do You See?

Something has occurred to me: I wonder how people will see me after they read my memoir?

Will they still see me as me? Or as a different version of me?

Will they say to me: Oh, you were so brave? Oh, you must be so angry? Oh, how did you turn out so normal?

This is usually what people ask me when they learn a bit of my past. They stop seeing me and start seeing a victim, start putting their own pictures of me over top of my face.

The real me becomes invisible.

And so I wonder, will they see what they want to see or will they see the person who stands in front of them?

Posted in Memoir | Leave a comment

Marshmellow Fire

The pain has moved.

Today it is my legs that are suffering. Specifically, my right leg. Every step I take with it sends a hot jab of pain up my calves, spreading from my ankle to my leg joint at my hip

I wonder if I glued glass to the bottoms of my feet during the night and take my shoes off to find out. No, just my feet, just my normal feet. Just my normal skin that houses uncomfortableness.

Every time my right shoulder throbs, my right leg answers. My left leg will answer weakly, as if it hasn’t gotten up the courage to cause me more discomfort; though I know it’s time will come soon. It’s usually never far behind.

I am reminded of the movie Alien where the beast came out of the mans chest. I wonder, if I found an opening, what would come out of me?

I try stretching my legs, feeling the muscles spasm at the first attempt. Being stubborn, I stretch them again, feeling the burn that has nothing to do with healthy exercise.

Feel the burn, feel the burn, feel the burn. I touch my leg where the muscles spasm in my calf and it feels hot; the skin feels as if it could burn my hand and I wonder if I will be consumed by fire from the inside out.

If this happened, I wonder where I could find marshmellows at a moments notice.

Posted in Muscles, Spasms, Walking | Leave a comment

Missing Pieces of Me.

Last night I wrote to a friend: Writing this memoir makes me feel as if I’m a puzzle and I am putting all the pieces together. And some of the pieces are missing.

She said that it would be a hard thing to take myself a part, study myself and put myself back together. That she wouldn’t be able to do it but knew I had the strength to continue.

I wrote a good chunk of the memoir last night and found myself trying to detach from what I was writing. I was figuring out dates and times, trying to get things into chronological order.

Was I really that young when this happened? Was I not older than that? Where does this memory fit? Why can’t I remember what I said? Who is this talking now? Who’s voice is that? Why do I remember a rough wool blanket? When was my brother born? What did my father look like (as if I could forget)?

 It feels like my brain is whispering when I write about myself, when I try to put myself down on paper. My fingers sped over the keyboard, memories taking new shape, getting new life in words.

I feel as if I am wading through a large swamp thick with muddy water. And I have not even made it half way through the soupy water. I can hear animals in the bushes, chattering at me.

And still I trudge on forward.

I asked Robert, my husband, if he would read what I wrote, if he would read what I’ve written so far. I knew before he answered that he would say no, that he would say: I want to read it when it’s finished.

How can I tell him that I want him to read the fragments, the puzzle pieces? That I want him to read as I go along, to come with me on this journey a bit at a time?

That the puzzle pieces are what will make up the whole and that maybe he can help me put the puzzle together? That it would mean so much to me if he read these words, because they are me on the printed page with nothing to hide behind.

A bared heart that beats for him.

But perhaps I’m meant to put the puzzle together myself, alone?

The very thought of that is frightening.

Posted in Memoir | Leave a comment