The Beauty of Pain

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.

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….