Before We Begin Again

Posted on July 4, 2013 by Jamieson Wolf

Two steps at a Time cover

See, here’s the thing. I just need to talk to someone.

It’s as simple as that, really. I feel like my head is going to pop like that guy in Scanners. I never knew someone could keep so much in their head. I used to write because I enjoyed it. I still do, but now there is an added incentive. I write to calm myself and keep the stress and worry at bay.

It’s my refuge, the place where nothing is wrong, except what the plot demands. Where everything that happens is because I want it to; but sometimes the plot surprises me. I’ve given thought to what I want to say here and how to tell the story.

It really is the first time I’ve been filled to bursting with words and I don’t know how to get them out.

Since the original blog of One Step at a Time was about my living with Cerebral Palsy, it only seemed right that I talk about my Multiple Sclerosis on here, too. Someone gave me a wise piece of advice: you should think about what you want to say before you start writing.

Very sage advice indeed, but it seems all I’ve been doing lately is thinking. There’s such a thing as too much internal thought. I like my alone time as much as the next person, but this is getting ridiculous.

I want to remember, though. I need to tell someone. I guess that’s where you come in.

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Elephant Laughter

Posted on October 11, 2008 by Jamieson Wolf

I do not trust my body as of late.

My feet do not want to bear the weight of my body. Every step I take is a painful step, an awful step filled with needles and broken glass that kiss the soles, the pain running up my legs like a forest fire, spreading along my body like a flush of skin.

I find that I have to take my time, that I have to walk slowly, making sure to keep every step in mind, making sure to be aware of my body. I count my steps so that I am aware of them, count them so that I will not fall.

One, two, three, four. Five, six, seven eight. Nine, ten, eleven, twelve.

I can no longer run.

When I try to run, when I try to jog towards a buss, leap towards a destination, I find my body filling with stone. It is as if the Elephant Man that lives inside of me flicks a switch and starts an avalanche.

I can feel the cement filling my legs, filling my body, inch by inch, bit by bit. And soon, I am rooted to the spot, unable to run, unable to walk until the stone is able to leak out of my pores into the air.

I stand there, waiting for the spasms to stop, counting, always counting.

Thirteen, fourteen fifteen, sixteen. Seventeen, eighteen, nineteen, twenty. Twenty one, twenty two, twenty three, twenty four.

At these moments, the spasms that normally are a tattoo of song sound like laughter. Hyena laughter, Elephant laughter. The Elephant Man that lives in my skin, the reclusive, painful Cybill Paulsen, the evil twin.

I try to plead with him, reason with him. But I fear that by giving him a name, I have given him power over me.

Posted in Muscles, Spasms, Walking | 1 Comment

Orchestra of my Body

Posted on October 8, 2008 by Jamieson Wolf

I have been working too much lately.

Days off are far and few between at the moment and I know that it is having an effect on my body. It is voicing its protest, vocal in its outrage.

I can feel the muscles in my body as I move, my back muscles throbbing underneath my skin. A pulse like a tattoo of rhythm, a soft tribal song that only I can hear.

My legs respond in kind. With no rest, they jive and twist, their own voice singing in tandem with the tribal song that runs through my blood.

If I sit very still, I can feel my back spasm, pulse, throb and my legs will respond, throb, pulse spasm.

I let my body sway the music that my body makes, picturing the notes flowing through my body as each pulse adds a new note to the orchestra of my body.

Posted in Muscles, Spasms | 1 Comment

The Beauty of Pain

Posted on September 5, 2008 by Jamieson Wolf

I was born stubborn.

Most people who know me know this (especially my Husband). I always insist on doing things my own way and forging on when others would have given up long ago.

Walking to work has been painful this week. My legs aren’t used to walking so far, braving the bridge of doom and the stairways within the warehouse of terror. But, despite the pain, I have braved them, I have tackled my fears, my bodies wants.

Last night, tired of the pain that lingers well into the night and carries me through my dreams (dark dreams tinged with red and populated by people from my past who whisper strange secrets) I decided to find an alternate route to work.

I found one that would involve only minimal walking, barely even five minutes instead of the 15 there and the 15 back to the buss stop. It sounded perfect, sounded wonderful. It would give my legs bliss, would stop my body from being filled with pain.

But this morning, riding on the buss, I stopped myself from riding to the mall where I would catch another buss. I got off the buss and, in a split second decision (something I do quite often) decided to take my regular route.

I knew that this was because I was stubborn. I didn’t want my body to win, I didn’t want to give in to it’s demands, to the Elephant Legs that find me, the hum that starts at the soles of my feet and moves up my legs slowly, caressing my calves with hot needle kisses.

I wanted to fight my body, I didn’t want it to win. I wanted to be victorious.

And so I made a compromise.

I took breaks every few minutes, made sure to sit when I felt my legs spasm, when I felt the hum grow in volume. While I was sitting there, letting the pain roll through my body, I tried to appreciate the beauty around me. By doing this, I hoped to turn the pain into something good, something positive.

I got off the buss and walked up the stairs to the trains station. I sat in front of the station and watched a girl saying goodbye to her parents before she went on a trip. I walked a bit further.

I stopped and sat on a pick nic table and watched the sparrows flying from branch to branch, their wings like whispers, their chirps like music. I walked a bit further.

I stopped and sat on the overpass, the bride that goes over the Queensway. I watched all the cars below me, marveling at the speed of them, the way the caressed the road as they traveled. I walked a bit further.

I got my coffee and arrived at work, sitting in front of the building on a bench. The leaves were falling off the trees and the wind danced with them for a brief moment before letting them fall.

I was still in pain when I got to work but somehow it didn’t matter. My pain didn’t seem like such a big deal compared to the beauty I had witnessed. I walked back to the buss stop after work today with more ease, as well.

I have made a compromise with my body. I might be in pain tonight, each step I take a blinding flash up my legs.

But I know that there is more beauty to come tomorrow.

Posted in Muscles, Spasms, Walking | 1 Comment

Humming Thrumming

Posted on September 2, 2008 by Jamieson Wolf

I knew the day was going to be problematic when I was walking to work today.

I started a new job and it is only ten minutes away from where I used to work. I figured, ten minutes! I can do ten minutes. I can walk that, I can do it, no problem!

Let me tell you, it was a long ten minutes.

I had to stop part way there and sit on a fence that is part of the bridge that over looks the road below me. There was nowhere else to sit, so it had to be there. I had to sit there. It was sit or fall down. My legs were spasming so badly, so intently, that it was sit or fall down.

I felt as if I were dragging rocks, dragging large sacks of rocks instead of my legs and my feet. I was sweating and breathing heavily, the effort to walk almost too much.

I sat on that fence rail and breathed in and out, in and out. I started counting, willing away the tears of frustration over a body that doesn’t want to work right, willing myself to focus, knowing that I was half way there.

One two three four, one two three four, one two three four, one two three four five six seven eight, one two three four five six seven eight….

I stood to walk again, my legs like stilts. I continued to walk, continued to push myself forward. When I got to the starbucks, I ordered my latte and sank greatully into one of the large cushy chairs they had. It was deep and inviting and I could feel my legs uttering a silent thank you.

When I got my latte, I walked slowly, ever so slowly, hoping that my legs wouldn’t react at being made to walk again. My hopes were in vain. I could barely make it to the front of the building, but I did and sank greatfully onto one of the benches there, the sun shining in my face.

I breathed a sigh of relief, sipped my latte, and was happy I had decided to arrive to work early. I could wait, wait for my legs to untangle themselves, to stop their constant humming, their thrumming.

I thought I would be alright for the day but when I went into the building I saw there were no elevators. I had to climb the stairs. I can handle one flight, perhaps two. But I looked up at the six flights of stairs that I had to climb and nearly cried.

Curse the man who invented such a cruel torture as stairs.

I got to the top, congratulating myself silently, thanking my legs for not spasming while I was going

 

                        up

            up

up

 

They were quiet, no elephant legs, no stone legs of the elephant man. I felt him inside me though, felt him wanting to come out, felt him waiting. He would wait until the end of the day to come out and make himself known.

I foolishly thought I would be alright. I thought I would be fine. I had walked to work, I had climbed the mountain of stairs. I would be alright.

On our lunch break, I was talking to a few of my new co-workers. One of the women was talking about a friend of hers who isn’t really disabled, who is screwing the system. I spoke up. “That makes me so mad. They’re giving us a bad name.”

The guy sitting next to her looked at me. “Us?” He asked.

“I’m disabled,” I said. “I have Cerebral Palsy.”

He laughed and looked me over. “I don’t know you,” he said. “But I know you don’t have Cerebral Palsy. You don’t look like you have a disability. You’d be a cripple if you did and you can walk fine.”

“Don’t judge a book by its cover.” I spat out. I was mad, hot mad, red mad. “There are all kinds of disabilities.” 

I didn’t enlighten him the way I had my other co-worker from the other day. I was too mad, to upset. I am not a cripple, but the disability I have is crippling. There is a difference, however subtle. There is a difference.

I passed through the day, made it through, congratulated myself, even knowing that a little part of me, a little tiny part in the back of my head, was dreading the walk back to the buss stop.

But I had conquered the stairs, I had conquered the bridge of pain. I could conquer them again, I WOULD conquer them again.

I am not crippled, I am not disabled. I have a disability that is crippling and I am differently abled.

The spasms started almost as soon as I had left the building and started walking. I knew then that the Elephant Man had lain in wait for me, that he had hidden himself, pulled himself up inside me to wait and to bide his time. I marched on, hoping that I could make it, hoping that I would make it to the buss stop.

I almost didn’t.

I got to the bridge again, that awful bridge of doom and my legs were in horrible pain. I could feel them singing inside the stone. I trudged down the bridge, could barely walk because my legs refused to work. They refused to move the way I wanted them to move, to move the way I need them (oh so desperately) to move.

I was now barely walking, it was more of a shuffle. To keep my mind off the pain, off the stone legs of the Elephant Man, I sang the only tune that came to mind:

Tip toe, through the tulips, past the garden, that’s where I’ll be. Just tip toe. Through the tulips, with me….

I kept singing, out loud and in my head, trying to ignore the pain and the tears that wanted to fall down my face. I made it to the buss terminal, knowing that stairs were coming but at least they were going

Down

            Down

                        Down

 

And I thought I could handle that. My legs had other ideas, other thoughts. I nearly fell, lost my footing and had to grab the hand rail. A man coming down the stairs behind me laughed, then quieted his laugh when he saw I was in pain and went on his way down the stairs.

I thought of swearing at him, but all my concentration was on making it down the stairs, so that I could wait for the buss. When the buss came, I prayed, hoped and prayed there would be a seat available. There was, but someone took it before I could. He was sitting in the seats saved for the old, blind, those with children and those who are disabled.

I thought about pointing out to him that I needed that seat more than he did, that I could barley stand on my own two feet. But then I had a flash of the man from work: You don’t look disabled.

So I just counted and held on to the bar, letting the buss take me home. I counted, knowing that I would be able to sit down soon, that everything would be alright once I sat down….

One two three four, one two three four, one two three four, one two three four five six seven eight, one two three four five six seven eight….

Posted in Muscles, People, Spasms, Walking | 3 Comments

Blind Co-Worker

Posted on September 1, 2008 by Jamieson Wolf

The other day at work, a co-worker stopped me.

“You walk like I do.” He said.

I looked at him cautiously. “And what way is that?” I asked.

“You’re pigeon toed.” He said. “You must be rough on your shoes.”

“I’m not pigeon toed.” I said. “I have Cerebral Palsy.”

He looked at me in shock for a few seconds and opened and closed his mouth like a fish. “I’m sorry!” he said. “I didn’t know, I had no idea!”

I shrugged. “It’s no biggie.” I told him. “You didn’t know.”

“You don’t look like your disabled.”

“It’s spastic.” I told him.

At his blank look, I explained that there were three different types of Cerebral Palsy, that I had Spastic Cerebral Palsy and that it affected my back and leg muscles. I told him about the spasms, about not being able to sit in one position for too long, about the pain.

“You poor, poor man.” He said.

“I didn’t tell you so I could have your pity.” I said. “I told you so that you would know.”

“But what a hard life you have had.” He said.

“It’s been hard yes,” I told him. “But I think having a disability has made me a better person.”

“Oh, I don’t think so.” He said. “You poor, poor man.”

No matter what I told my co-worker, he continued to eye me with pity. I was reminded once more why I am usually quiet about what rests inside of me. But then reprimanded myself. If I don’t tell people, they won’t know.

Despite my best efforts, my co-worker couldn’t see how living with Cerebral Palsy could be a blessing. He couldn’t see how it’s made me a stronger person, how I’ve had to fight for, and earn, whatever I wanted.

As I walked away, I found myself frustrated with his lack of understanding. But then I told myself that understanding, like living with Cerebral Palsy, has to come one step at a time.

Posted in People, Walking | 2 Comments

HAPPY BIRTHDAY!

Posted on March 1, 2008 by Jamieson Wolf

 Today, March 1st, 2008, is a very special day.

Today this blog is a year old.

HAPPY BIRTHDAY ONE STEP AT A TIME!

I can’t believe it’s been an entire year that I’ve been writing about what it is like to live with Cerebral Palsy. What started as a painful exercise has now become a release. What started as a way to let others know what it is like to live with a disability has become a way for me to cope.

It’s been an incredible, amazing, harrowing, wonderful year. There have been so many ups and downs in this year: my wedding anniversary, the death of my grandfather, two new jobs, new friends.

But this blog has remained a constant for me.

It’s also incredible to know that there are thousands of you out there who have visited this blog, who have read my words and taken inspiration from them. I’ve received so many emails, been touched by so many people, because of the words here.

To think that my words are offering others inspiration is amazing for me. By writing, by putting my words down, I’m relieving a bit of my pain. Knowing that I’ve given others hope or inspiration is an added extra bonus.

This blog has also spawned something else. Most of you know that my memoir based off this blog, also titled One Step at a Time, will be published by The Friday Project later this year.

Never in a million years did I think I would ever write a memoir. Never in a zillion years did I think I could actually do it, that I could pull it off. It’s been a year of searching, remembering forgotten things. Writing the memoir has been one of the most (perhaps THE most) difficult things I have ever had to do. But also one of the most rewarding.

It all came about because of this blog.

It’s not an easy task for me to write about myself. I don’t actually enjoy it every much. But with each blog post it’s getting easier. I’ve received so many emails asking if it is hard to put myself out there for others to read, to talk about a very personal disability. Many of them have told me they don’t think they could do it, that they don’t have my courage.

I don’t know if it has anything to do with courage. Everyone has this inside them, this courage and strength. They just need to find it, let it out. I do this every time I write a blog post. I write them fast, quickly, publish the posts without editing or looking back, knowing that each time I publish a post it requires another bit of courage, another bit of strength to share something with others that is so personal for me.

Though out this year, writing this blog has taught me a lot about myself, about the courage that all of us have inside ourselves. I still can’t believe that it’s been an entire year, that one year has passed since the original idea to start a blog about what it was like living with Cerebral Palsy.

Its just mind blowing, isn’t it?

There are so many people I’d like to thank for having the strength to continue writing One Step at a Time, so I’ll thank them quickly here if you don’t mind: My husband Robert who is the greatest gift. Sandy who gives me so much strength. Caroline who was the first to read the memoir and who has become such an amazing friend. Scott Pack and everyone at The Friday Project for believing in my words. My parents, Wonder Mum and Wonder Dad; thank you for loving me.

And you.

Yes you!

Thank you for reading my words, for letting me know how my words have touched you and thank you.

I couldn’t have done it without any of you!

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Wishful Dancing

Posted on February 29, 2008 by Jamieson Wolf

I am sure that my legs have it in for me.

Yesterday, on the buss, I completely lost my balance. One moment I was standing, and then, when the driver turned, my legs gave out. I fell into the lap of a lady and was deeply apologetic. She smiled and said it was no problem. “I fell a few days ago and put my hands out to stop myself from falling. I ended up feeling some woman’s breast.”

At least she had a sense of humour.

Today, I was walking to work and took a step, only to find myself falling. My left leg had completely given out and I ended up falling hard onto my back. I should have known that something like this was going to happen.

Today, I’ve tripped over my feet six times already and each time I have to catch myself, put my hands out to catch something, to grab something, so that I do not fall. There is no warning for this, no remedy I can think of.

I wish I could walk properly, that my legs would cooperate with me, that they would take me where I need to go without trying to do me in at the same time. It doesn’t seem like a fair trade, pain for walking.

But nothing in life is easy.

For the past couple of weeks, a new pain has started to form in my legs. Instead of my regular spasms, I’ve had what can only be described as tremors. Usually they’ll be on the sides of my thighs or the backs of my legs.

They start with a light tickling, as if my leg has gone to sleep. But then they progress to a hot, brief spasm. I can feel the muscles moving, more so than usual. It’s like their dancing underneath my skin. Even now, sitting here typing this, I can feel one beginning in my right thigh.

It’s as if my muscles are dancing to their own beat, to their own music. I wish I could hear the music so that I could dance with them, to their tribal beat.

After the music, after the spasms, my legs are incredibly sore and walking is painful. It hurts to put pressure on my feet, to support my body weight. I wonder, briefly, what this means and then put it out of my head.

I don’t want to think about that now.

Instead, I continue to count through the pain, count through the spasms.

One two three four, one two three four, one two three four, one two three four.

I pretend that I am dancing, that I am moving to a rhythm, moving to a beat. Maybe, if I pretend that I’m dancing long enough, the pain will go away.

Posted in discomfort, Muscles, People | 1 Comment

Thankful for Pain

Posted on February 17, 2008 by Jamieson Wolf

Last week, another package came for me.

I knew that I would have to pick it up at the post office. I am ashamed to admit that I was afraid to go.

I was afraid to go to the Post Office because of what happened last time; I was afraid to go because I thought it might happen again.

It is very hard for me to admit that I am afraid of anything as I usually confront that kind of thing head on. I usually ignore the pain in my legs, my feet, tell myself not to be a baby and trudge on forward.

That’s what I did the last time I went to the Post Office; and look what happened then.

I woke up last Saturday and knew that I would have to take the buss to the post office. I knew that I would not be able to walk, that my legs felt the same way they did when I ended up shuffling along, barely able to walk.

It mollified me to admit I had to take a buss. I was embarrassed by this and somewhat humiliated. But after the last time, that last walk with Elephant Legs, it took a week for them to be alright again. It took a week for the pain to go away.

But it never completely goes away anymore.

The entire time I was getting ready, I kept telling myself that it was alright to take the buss, that it didn’t mean I was weak. I kept telling myself that I shouldn’t be ashamed, that I should be proud of myself for acknowledging my limits, for sticking within them.

But even now, a week later, it still stifles me; it still rankles. And it pisses me the hell off. Normally when I get pissed off, I do something about it, but this week has been difficult.

I have been in pain almost every day. At work, I concentrate so as not to show the pain in my face when my back spasms. I remember to tell myself not to make any noises or let sound escape from me when pain rips across my legs or shoulders.

I am ashamed to admit that perhaps there is nothing I can do, that my body will eventually win the war I have been fighting for almost thirty years.

But there is some compensation to take from all this. I was supposed to have died, to have passed away after a few breaths. I was not supposed to have lived. Thankfully I have proved that doctors can  in fact be wrong.

I will be thirty in August of this year. I have had thirty wonderful years and hope to live for sixty wonderful more. Though I am filled with pain I am also filled with hope. I wonder if one is not a product of the other.

For even though the pain humiliates me, shames me, limits me.

It lets me know I am alive and I am thankful.

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Elephant Legs

Posted on January 27, 2008 by Jamieson Wolf

The Elephant Legs have returned with a vengeance.

I got up in the morning and could already feel my legs seizing up. I could already feel the cement being poured into them, could feel the hardness of them. I was determined not to let it bother me, determined not to worry about it.

Even though I know what that hardness meant so early in the day. I should have listened to my body, listened to my legs, but I’m inherently stubborn. I won’t let anything stop me from doing something I want to do, even my own body.

I went to go to the post office. I had received a parcel notice and was looking forward to picking it up; what would it be? A book I had ordered? (there are several on the way) Or maybe a Christmas present from one of my heart sisters Kimberlee. I had been expecting it. I hoped that’s what it was.

After only a few steps, less than half a block, my legs started to seize up. They started to protest the very fact that I was making them walk. I figured I could make it to the post office. I had checked the directions, it should have only been a fifteen minute walk.

It ended up taking half an hour to get to the post office.

With each step, my legs grew harder and harder, more like rock than flesh. I can’t describe the amount of pain I was in; there are no words for it. All I can tell you was that I wanted to cry. I wanted to stop walking and cry right there in the middle of a sidewalk, the winter sun bright and blinding.

I did not allow myself to stop or to cry. I knew that if I started crying, I would not be able to stop. The pain made my breath catch with each step. I was limping by this point, each step more painful than the last one, but I knew that if I stopped walking, I would not be able to start again.

Damned if I do, damned if I don’t.

So I continued to walk, continued to will myself not to cry, continued to will myself to keep walking. It was the first time I had resorted to counting in a long time. With each step I counted, I felt a surge of victory.

One two three four five six seven eight nine ten eleven twelve thirteen fourteen fifteen sixteen seventeen eighteen nineteen twenty

twenty one twenty two twenty three twenty four twenty five twenty six twenty seven twenty eight twenty nine thirty……

I ended up losing count several times, not being able to concentrate on continuing to walk and the pain and counting at the same time. I’m good at multi-tasking but not yesterday. Yesterday I just didn’t have it in me.

I can’t describe the pain I was in. Words hardly ever fail me but they fail me here.

I was nearing St. Paul University when I saw a young woman coming towards me. She smiled, looked as if she was going to say hello, and then stopped. Looked at me.

Looked at my legs.

I was limping with each step, barely able to pick my foot up off the ground with each step, making shuffling noises as I walked. I was trying not to cry and I watched as her smile faltered, as it changed into something that looked like loathing.

I came nearer to her. “Is there a problem?” I asked.

“Are you alright?” She asked. Disdain dripped from her lips.

“I’m disabled.” I said.

She laughed. “Oh, I thought you were drunk.” then she smiled at me again because she knew I wasn’t an alcoholic, because now it was okay to treat me like a human being, now it was alright to be nice to me; because I didn’t have a drinking problem.

I said nothing to her and kept walking. I knew I was close to my destination. The woman called after me: “Have a nice day!”

I turned around and gave her the finger.

At the post office, waiting in line to collect my package, I kept moving from foot to foot. I couldn’t put too much pressure on one foot, couldn’t stop moving because I would not be able to start walking again. I would not be able to walk.

There were tears in the back of my eyes and I blinked them away, willed them away, waited for my turn to collect my parcel. When the moment came, I almost cried with relief because it meant that my journey was half way done, meant that I would be home soon.

I took my parcel and started the journey home, willing myself to make it. I had my cell phone with me. I could have phoned a cab to pick me up and take me home; I could have called my husband who would have come to get me.

But I didn’t. Mostly because I’m stubborn. And I have a lot of pride.

So I continued to walk, no longer able to feel my legs or my feet. They were rocks now, cement poured into my skin, Elephant Legs that clumped and thumped and stompedalong. I was the Elephant Man, I was the broken boy. I was the Egg Man, Koo Koo Ka-Choo!

I saw my apartment building, I saw my home, standing tall in the distance and then I did allow myself to cry, only a little. I allowed some tears to slide down my cheeks in relief because I would be home soon. I would be home.

And I could sit down.

Such a simple thing, such a normal thing, sitting. But to me, at that moment,  it was the thing I wanted to do more than anything else in the world.

And all the while, walking towards home, I was counting.

One step at a time…

One, two, three, four, five, six, seven, eight, nine, ten….

Posted in discomfort, Muscles, Spasms, swelling, Walking | 2 Comments