Humming Thrumming

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….

Blind Co-Worker

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.

After A Lengthy Pause…

It has been a long time since I’ve written this blog.There are a few reasons for that. The first being that The Friday Project is no longer going to publish the memoir based off this blog. This is for a multitude of reasons, none of them having to do with me.

The blog and the memoir were so intertwined with each other that it was hurtful to me to continue to write here. Knowing that two years worth of work were going to sit in the darkness after being promised the light was painful and, to be honest, I was a bit resentful of the blog.

Since the bankruptcy and buy out of The Friday Project (they are now part of Harper Collins) it has been hard to acknowledge this blog, to acknowledge the memoir. It was and is such a personal project for me that when Harper Collins didn’t want the book, it was as if they didn’t want me.

I’m sure any author would feel this way. But because this is a memoir, because the blog and book are me on the page, the damage was double what it would have been normally.

And so I stopped visiting this blog. I stopped penning my daily experiences with Cerebral Palsy. It was too painful to me to do so. And yet…

And yet, people have still stopped by to read it, have still stopped by to comment on it. I receive more emails about this blog than I do about any of my other pieces of writing. That’s saying something since those pieces are published in a multitude of different forms and One Step at a Time is still a blog.

I stopped writing in March 2008, one the one year anniversary of the blog. It seems only appropriate that I start writing this blog again, now that I have turned thirty.

Please forgive me if you’ve been waiting for posts; I’ve had to work through my own demons and dreams in order to make peace with the situation. Thankfully, I have an agent now, and we will hopefully see my memoir on the shelves in the near future.

But I realized recently that this blog isn’t about the memoir, no matter how intertwined they might be. This blog is about the disability, Cerebral Palsy and about giving inspiration and hope to those who might need it.

I can only hope you’ll forgive me for my lengthy absence. Stay tuned for more posts and read along as I take things one step at a time….

Wishful Dancing

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.

Saviour

More than ever, I think that my legs want to do me in.

Yesterday, I was getting off the buss, heading to the bookstore to buy the new Stephen King novel. I stepped off the buss and felt the ground rush up to meet my face.

Or rather, my body rushed down to meet it.

I had stepped off the back of the buss with my right leg and it had given away completely. I slammed onto the ground, the breath taken out of me, and my feet and part of my legs slid underneath the buss.

I felt a rumble above my legs. The buss was preparing to move away, with part of me underneath it.

The entire time, as I am lying there, my legs spasming full force now, no one offered to help me. I lay there, struggling to get back up on my feet with dignity, and no one offered to lend me a hand. No one asked if I was okay, no one bothered to tell me the buss was beginning to move.

They all just looked at me, stared. One woman even laughed and began to point. I tried to pull my legs out from under the buss, tried to move.

Thankfully, a woman towards the front of the buss yelled for the buss driver to stop. She waved at him and pounded on the front door. “Someones fallen back there,” she said. “Don’t move yet, he’s fallen.”

This made more people stare, those to absorbed in their own worlds who hadn’t noticed in the first place. They all looked, stared, gawked, but no one offered to step forward, no one helped.

The woman at the front of the buss watched, waited, while I got up with difficulty, feeling my cheeks flush. She gave the driver the okay sign and then came towards me. “Are you okay?” she asked.

She was older, perhaps fifty or so. She had lovely brown hair that peeked out from underneath a knit cap. “Yes,” I told her. “Thank you so much for helping me.” I wanted to reach out and touch her, make contact with her some how, to convey my thanks. “I don’t know what I would have done without you.”

“Don’t mention it.” she said. “You would have done the same for me.”

“Yes, I would have.”

“More than I can say for any of the fuckers here.” she said. “Fuckers. People fucking suck.”

“You don’t.” I said. “Thank you.” The words seemed too small, incapable of conveying my thanks.

She reached out and touched me, took my hand. “You walk carefully, okay dear?”

I nodded and watched her walk away.

My saviour.

Holiday Thoughts

It’s been too long since I’ve updated this blog but not for lack of trying. Life just seems to get in the way of things, especially when you’re busy. What with the Holidays upon us, it’s little wonder that I’ve had no time to post.

 

I have been hard at work on the edits for my memoir titled One Step at a Time. It’s going to be published by The Friday Project in the summer of 2008. Thankfully the edits are almost done and I will be back to a regular posting schedule in the new year.

 

While the writing of the memoir has been difficult, it’s been the most rewarding of tasks to delve into it, to give my life a shape on paper when I can only remember it in pictures, little snapshots. My eyes are the lens and my brain is the camera, capturing images for prosperity.

 

The Holidays always help me remember bits and pieces of my past that I otherwise would have forgotten. I remember the smells of baking, the songs I used to sing. I remember baking with my grandmother, wrapping gifts with my mother.

 

While I’ve been editing my memoir and going through the pieces of my life I’ve sewn together, the memoirs have become stronger, become more concrete and less blurry. It’s been the weirdest experience looking at my life with a fine tooth comb, knowing that others are going to read about it in a short time.

 

I’m always amazed at the things that I’m able to remember. Sounds, music, little mental pictures that float to the surface like treasures. Especially around the Holidays I’m reminded of family, of togetherness, of companionship.

 

When I have those things around the Holidays, the pain in my legs doesn’t matter, the spasms in my back don’t hold any meaning for me. Because I know that, with a little luck, love and perseverance, anything is possible.

  

Showing Itself

The other day at work my co-worker asked me: “Do you take any pain killers?”

I shook my head. “No.” I said.

“Why not? Surely with your Cerebral Palsy, you should be able to?”

I shrug. “I don’t take anything but asprin. I don’t like losing control of myself. I don’t feel like living in a fog. “

“But is it better to remain in pain?” I could tell she was sincerely concerned for me.

“It’s better to live with it rather than trying to put a band aid on it.” I said. “I have to be able to be aware.” I told her. “There are worse things in the world than living with a bit of soreness.”

“Did you take any tylonol today?” she asked.

I nodded. “Yes, it hasn’t kicked in yet.”

“I can tell,” she said. “You’re walking funny today.”

I wondered later about how things change.

Years ago, people didn’t notice my Cerebral Palsy. People were shocked when I told them I had it.

Now, they can see it. It’s as if it no longer wants to hide, no longer wants to keep hidden and is trying to show itself, to make itself known, whether I want it to or not.

A Marked Man

I am still convinced that my legs are trying to get me killed.

 Sure, they may not be trying too hard; but I know it is one of their many efforts aside from walking.

Last Saturday, we went out to celebrate our friend Marks birthday. He was turning 29 again for the third time. He looks gorgeous for 29 and has fantastic skin. They encouraged us to eat, drink and be merry.

All night, Robert kept noticing me grimace. “What’s wrong?” He would ask. “Your legs bothering you?”

I would nod. “They’re sore.” In truth, they were knotted masses of tree trunks, elephant legs grown over night or in mere moments.

He would offer me his seat but that wouldn’t help. It was as if sitting intensified the Elephant Legs, as if sitting forced them to move when they did not want to. I could feel every muscle, every spasm.

I ignored it as best I could as the evening wore on, as they night took hold of us. I talked to others, I drank, I ate more food. All in an effort to ignore what was building in my legs. I could feel it boiling there, as it it wanted to let off steam and it would do so through the pores of my skin.

We went to a bar to ring in Marks birthday, midnight rolling around with both Robert and I hitting our respective walls. Going home in the cab, I could feel my legs protesting what I had put them through tonight. They were very, very vocal. I should have noticed the warning signs. “Drinking, dancing, parties?” They were saying. “Oh, you owe us. You SO owe us.”

I was bringing two glasses of ginger-ale out of the kitchen, walking toward Robert in the living room, when it happened: my legs gave out. They gave out completely. One moment, I was walking and the next I was falling, flying, floating towards the ground.

I hit the ground hard on my right leg and right arm. I think I made a sound but I can’t be sure, I really don’t remember if I did or not. I put the glasses on the table (still more than half full with their golden liquid) and got up.

I looked at my legs. They were numb but I could feel them shaking. I felt like hitting them, berating them for giving out on me. I was worried that there was no warning the moment before they gave away. I wonder if I had pushed them too hard, had forced them to do too much that evening?

I went to bed and thought nothing of the fall until the next morning. I turned over in bed and Robert came into the bedroom, saw me lying there. “What did you do to your leg?” He asked.

“What do you mean?”

“Your leg, it’s bruised.”

I got up and went to the full length mirror. Bruise was such a simple word for what graced my leg. I had a large bruise, about the size of my hand with my fingers stretched out. It was on my right thigh, on the side, and it looked like a big black mass of shadow.

I touched it and felt the swelling, the pain. “It must have been from the fall.” I said.

“You fell really hard.” Robert replied. “You hit the table on the way down too, before you hit the floor.”

I stared at the bruise with awe that my body could produce something so ugly. Robert cringed when he looked at it. “Put some cream on it, some moisturizer.” he said. “That will help the swelling go down.”

I stared at my leg, at the mark that was now on my skin and couldn’t help but be reminded of the novel Treasure Island and the pirate who receives the Black Mark pressed into his palm, marking him for death.

I prodded the bruise, felt a fresh tinge of pain and wondered was I now a marked man? Was I now marked for something to come, for an unforeseen event that I had no inkling of?

The bruise has faded from black to purple to brown to red to yellow. I have watched the rainbow that my legs have given me change and, at the same time, have watched the leaves outside change from green to red and yellow and gold.

It is no longer sore, my legs have been quiet. I think they over extorted themselves last week, they need a rest. But I can’t help but wonder if they have marked me for a reason or if I am simply being overly dramatic. Perhaps a bit of both.

Now, though, I will watch the bruise fade and the leave outside my window as they continue to change colour and then break away from the trees, drifting away on the wind to find their own destiny.

A Milestone

Well I reached a milestone last night.

  I’m now three quarters through my memoir One Step at a Time. I’ve got a good chunk left but I was able to get twenty five pages written this weekend which is way beyond what I can normally pull off.   Writing novels is so much easier and I can always lose myself in the story, in the characters, in what’s going on. Writing twenty five pages of a novel is nothing. Writing twenty five pages of a memoir is incredibly hard.   

I had no idea what the journey would entail when I started writing One Step at a Time. I had no idea the emotions I would feel, the memories I would stir up, the forgotten things that would come back into the forefront. It’s been a gruelling, emotional experience and I’ve still got a bit to go.

  

But you know, I wouldn’t have it any other way.

  This is the most involved I’ve been with my writing in forever. I like writing novels but don’t love it. I love writing short stories but, regrettably, that’s a genre of writing that has fallen by the wayside. No one publishes short stories anymore. So novels it is. But I’ve never gotten emotional when writing my novels except for The Ghost Mirror.   

I’ve cried, raged, and had nightmares while writing One Step at a Time. It’s been agony, blissful, joyful, frightening, and revealing and all manner of other things.

  

What I find most interesting about it all is that this is the first time I’ve taken to sit back and take a good honest look at me. I’ve never done this before. I don’t know why this is, why I haven’t bothered. But there you go. That’s the truth of it.

  

I can now look at myself and feel that I am proud of me, proud of myself; I haven’t been able to say this about myself for years. Sure, I could think it, ponder it, hold it like a stone in the palm of my hand. But I’ve never felt it. Now I can.

  

A few wonderful people have been test readers for me. The lovely Caroline, my Husband, Dorothy. I can’t thank these people enough. They have read my words (MY words, not a story, which just floors me) and have still looked at me the same way, have still seen me as me. I can’t thank them enough for that. I love them for that, for being able to still respect me and love me for me after reading what I’ve written.

  And now I can see the end of the journey coming. I know its coming; I can see the light at the end of the preverbal tunnel. And now that is frightening. I’m ending the memoir just after Robert (My beautiful husband) proposes to me. I know there will be at least one more book detailing my life after One Step at a Time. I already have a working title in mind.    The future is ahead of me and that is the greatest adventure there is.  

Birthday Reminders

I was born on August 22nd, 1978. Every year around my birthday I am reminded that I was supposed to have died

 

My mother, young and frightened, felt her contractions starting late one evening and was rushed to the hospital. She was told that she was in labour. Scared, she did what she could to stop the labour. It was too early, it was too soon.

 

There was a reason for her fright. But the birth had not been an easy one. It had lasted forty eight long hours; by the end of it my mother was close to physical, mental and spiritual exhaustion.

 

The first problem was that my twin brother and I were born three months premature. Any number of problems could have occurred at the beginning of the birth; but thankfully Robert came out fine.

 

I would be the one to cause problems.

 

When Robert came out, he turned me so that I was feet first instead of head first. I could not, or would not, come out of her womb. Jailed with a cellmate for six months, I was content to swim in the space now afforded to me.

 

I had already stayed in the womb too long, however. The doctor, forgoing medical procedures, reached in and pulled me out.

 

According to my mother, I was a sickly blue colour. “You looked like a little blueberry.” She would tell me later. “I waited what seemed like forever to hear you cry.”

 

Finally I did make a sound but the doctor was worried. I had been in the womb too long. He was sure I had suffered brain damage and would die sometime that evening.

 

For the next eight hours, people prayed.

 

My father was a practicing Ba-hai at the time. He and his congregation prayed for me to live. My mother, alone in the hospital, held my hand through an incubator glove. According to her I held on for dear life and would not let go.

 

Amazingly, the power of prayer worked. I had survived the night.

 

The doctor was amazed. “He won’t survive another night.” He told my mother. “And frankly, if he does, he’ll never be able to walk and he’ll be a vegetable.”

 

You can guess what my mother told him.

 

But, against the odds, I continued to thrive. Doctors and nurses studied me; they watched me and poked me, took notes and shook their heads.

 

I was supposed to have died. By all rights, I should have. But I continued to do better day after day. Another doctor came and talked to my mother.

 

“He should have died.” He told her. “He should have been dead when he left the womb.” The doctor shook his head. “I’ve never seen anything like it. He should have died but he’s still alive.” The doctor looked solemn. “He’s Gods child now.” he told her.

 

Other doctors called me a miracle baby. But to my mother, I was simply her son.

 

Life has not bee easy however. I was born with spastic Cerebral Palsy, scoliosis of the spine, underdeveloped internal organs, complications with my motor skills, severe learning disabilities and a host of other problems.

 

But none of that matters to me.

 

I think this has to do with the fact that I am more thankful than most. I am thankful for every day I have, every day I live despite my afflictions and complications. I am thankful for the chance to breathe and to walk, however painful. 

 

And I am thankful for those around me.

 

Birthdays are not the dire progress of age like they are for most people. For me, Birthdays are a celebration of life. Birthdays are a reminder of what could have been and what is.

 

Every year I am reminded that I should not have lived. Every year I am reminded that I am here through the grace of some higher power to do some good on this Earth. Every year I am reminded that it was not medical science that kept me alive.

 

It was the love of my mother.

 

 Thanks Mum.