Abled Not Disabled

Cerebral Palsy is not a disease.

A few people have been sending me emails and leaving comments on this blog and I am thankful beyond words that my words have moved them to do so.

It’s still a bit bizzare to know that my words provoke emotion, that others are moved to comment. I think this is the wonderful thing about words and it’s what helps me to write this blog.

The fact that others reading it can know what it is like to have a disability, really know what it is like for someone living with one, that makes all of worth it.

Which brings me to some of the comments. I wanted to make sure that people understood, that they really comprehended what I have inside me, what rests inside my body.

Cerebral Palsy means brain paralysis. It is a disability that affects movement and the position of the body. It comes from brain damage from before the baby was born, during birth or as a baby.

The whole brain is not damaged, only parts of it and mainly the parts that control movement. 

I just want to make sure that everyone knows it’s not a disease. While a disability can seem like a disease (and even I have called it so on this blog) it’s not. It’s a physical and mental disability that affects my life; one that I live with every day.

It’s funny; when I was younger and growing up I used to think of myself as damaged goods because of my having Cerebral Palsy. I used to wish and wish and WISH that I could be like others.

I would watch them walking and think to myself: I want to walk like them. I would admire my twins feet as he walked in front of me.

Heel toe. Heel toe. Heel toe.

Something as simple as walking properly, walking gracefully, seemed unobtainable to me. I kept thinking that maybe if I concentrated harder, if I found comfortable enough shoes, if I wished hard enough, I would be like everyone else.

It seems silly to me that something as simple, as casual as walking would set me apart from others; that it would isolate me and mark me, scar me on the inside and the outside.

But it did.

Adults can be cruel but children are even worse. They are taught by their parents to hate and criticise and shun anything that is different. And children can take to these beliefs with a vengence.

I remember waiting at the local mall in line to see a movie. I can’t remember the movie (and I wouldn’t want to date myself; I want to be ageless) but I remember walking towards my twin brother.

There were two kids, boys my age, that started walking with limps and they began to slap their hands against their chests and mumble as if they were incapable of proper speech. They were pointing and laughing at me and I felt much like the circus sideshow freaks might have felt: under a spotlight and hating the brightness of it.

I approached them and asked them what was so funny. They said it was the way I walked. “You look like a Jerrys kid,” one said. “You walk like a cripple.”

“I have Cerebral Palsy.” I told them. “I’m physically disabled.” My voice was quiet; anger seethed in me.

The two boys had the grace to look shamed. They apologized. “We didn’t know you really actually had a problem.” one said.

“Why should that make a difference?”

It shouldn’t.

It’s taken me years not to view myself as damaged goods, as something that was made broken. As something that no one would want.

I no longer wish to walk like everyone else, though I still find it fascinating, watching how others walk; I just know that I don’t want to be like them anymore.

Instead, I think of myself as abled; not disabled.

For there is really nothing different about me at all.

Pride on the Wind

I have not blogged lately.

This is mostly because I have been on vacation and have been hard at work on the memoir. My legs, however, have not been on vacation, regardless of what the rest of me is doing.

Several times on my vacation I had to sit quickly before my legs gave out under me. It would happen at the most inconvienient times: in line to buy coffee, walking to the store, while talking to someone.

I tried to sit quietly, if such a thing can be done; I tried to sit without drawing attention to myself. I know the concern of others is well meant but I still find it embarassing.

I don’t know why this is. After living with Cybill Paulsen for so long, that dasderdly twin of mine, you would think that I would be used to it by now; you would think, wouldn’t you, that I would be fine with what resides in my body.

But the truth is I’m embarassed for others to see me in pain. I think it’s a pride issue, that I have too much pride to even let on that I’m feeling anything. I don’t want to be a bother to others; their sympathy sometimes makes me feel uncomfortable.

I have always been this way though. Downplaying pain in a soft, quiet way. Once, when my brother broke a finger on my right hand and my skin had gone white and clammy, I said that it was throbbing slightly, that it was tingling.

In reality, my entire arm was numb and I could feel every movement, every scraping of the bones. It is the same with my legs, the same with my Cerebral Palsy.

I don’t want to be a bother to others, I don’t want to dampen them down, bring them down to my level. I don’t want them to have to feel what I feel; I need to keep it within my skin, to keep it to myself, rather than see the pain that is in their eyes.

This can sometimes have dire consequences, though. For about three days of my vacation, I existed in a blue fog, a sadness that seemed to seep into me. I would go for walks in the sun, have beer on my patio, work on my art; nothing would alieviate the fog floating around my head.

My good friend Dorothy told me that holding onto pain is what causes depression. Keeping it in is what brings us down.

I thought of something I could do to ease the pain inside me and help lift the fog. An idea came to me part way through the third day.

I drew a picture of myself; I tried to draw myself in pain: all rough angles, all harsh lines, my pen gouging the paper, ripping it in places, lines pressing into the other pages, leaving an indentation on the other paper like a shadow.

I folded the paper and put it in my pocket and went for a walk, my legs spasming painfully. I breathed in and out as I walked, making sure not to count out loud. Too many people look at me as it is.

I stopped in a park near Parliment Hill and took the paper out of my pocket. It was a windy day, the breeze was cool and the sun was warm. I remember it like a kiss on my skin.

I ripped the paper into small, smaller, smallest pieces, picturing the blueness leaving me and having it replaced with something bright. Something gold, vibrant and alive.

I raised my hand to the wind and let the breeze take the pieces; they littered the ground like snow or confetti and I remember thinking at the time:

Just take things one step at a time, one step at a time, one step at a time.

Strangely, afte the last piece of paper left my hand, I felt better.

A Guessing Game

My legs are talking again.

I can feel them throbbing with the want to scream their lungs out. If legs had lungs that is.

Their conversation is particularly loud today as I make my way to work. My left leg seems to be particularly pissed off at the right leg; it seizes up and I can barely walk on it. I know I’m limping and that people are looking, but I keep walking anyway.

The left one buzzes with the injustice of being so insulted. I can feel the muscles stretching and contracting and I hope, pray, wish that I can make it to the bus stop so that I will have a moment to sit.

The bus is my salvation in the mornings. I get to sit for a few moment while my legs calm themselves down and make up, fixing whatever slight there was between them. This morning, the bus smelled like urine, but I didn’t care. I was sitting.

I know that I am in for another heated conversation between my legs on my trip home. Even now, sitting at my desk, I can feel my calf muscles begin to tingle. I can always tell if a spasm is going to come because my legs begin to throb.

Sort of like an early warning system for spasms instead of tornado’s.

My left leg is buzzing, chittering, chattering, throbbing. I can feel my right leg (never one to be left out of the fun) starting to spasm and tingle and I wonder which one will cause me the most pain this time.

I try to make a game out of it, try to guess which leg will go numb on my walk home. It’s always one or the other, thankfully never both at the same time. I’m usually wrong and it distresses me that I still don’t know my body after all this time.

I wonder if I will have to find a bench to sit on part way home like I had to last night. I couldn’t keep walking. I was in the mall and saw the nirvana of a chair, unoccupied, waiting for my buttocks to mark their place and for my legs to find comfort.

I remember walking towards the chair thinking: One more step and I get to sit down. Another step and I get to sit down. I can do this, I’m almost at the chair, one more step and I can sit down. One more step, one step, one step, one, one, one.

I hope that my legs don’t have such a heated conversation tonight. When my legs are angry, they cause me such pain.

Which one will it be tonight?

Let the guessing game begin.

Heel Toe Get Up and Go

Today it is my feet that are bothering me.

I can’t seem to walk properly today; I don’t know why this is. I feel like I have clown feet today, cripple feet. I go to take a step and find myself tripping over my own feet.

This morning, while walking to work, I took a step and stumbled when my right foot caught on the floor. It felt like I was pulling it out of glue but when I looked down at it, there it was. My foot, looking normal and harmless.

My feet want me dead.

I tripped again on my walk to work and heard someone behind me laugh. I turned and I guess the look on my face quieted them. They shrugged and gave me a weak smile.

I said nothing and went to take another step when my right foot flipped again, this time causing me to finally hit the ground.

The person who laughed at me did not move to help me up but watched as I stood with difficulty, already feeling my legs seize up due to the unwanted strain. She laughed again and pointed at the offending appendages.

“You have two left feet.” she said.

“They are clown feet.” I replied and walked away from her, perhaps wondering what I meant.

In truth, this has been happening allot lately. The toes of my feet catch on the ground when they touch first and I keep walking.

No matter how much I concentrate -

heeltoeheeltoeheeltoeheeltoeheeltoeheeltoeheeltoeheeltoe

I find myself stumbling, falling into others, unable to keep my balance on moving buses. I’m not sure what my legs, my feet, my muscles are trying to tell me.

Are they crying out in protest because I continue to walk? My muscles are quiet today after their fall. They have achieved what they wanted to do, perhaps?

I wipe away a tear of frustration (how did this get on my face?) and force my mouth into a grim line. I will not let my own body beat me, I will not succumb.

But this thought occurs to me: How long can I battle myself?

Blue Blood Words

I have been quiet lately.

This has been mostly due to the fact that I am fighting off a small bout of depression. It’s as if there is a blueness around me that I can breathe in. It wants to wrap itself around me like a blanket but I am pushing it away.

I do not want to become entangled in its embrace.

That’s not to say that I’m not writing. I am. I tinker away at the memoir, One Step at a Time. Or rather, one word at a time.

I’m coming to think of these words, the ink upon the page, like a kind of blood. Though black and still, the words shine for me, as if they were alive, as if they were breathing, living things.

I suppose that in a way they are. They’ve become a maze of words and emotions that I have had to fight my way through.

The curves on the J’s become barbs and the edges on the T’s are sharp and prick my fingers. The O’s are round and soft but I have to be careful; I could become lost in them.

Memories that I had locked away to never be seen again are stretching and growing alive again after a long, dreamless sleep. They breathe in and take breath from me, stealing air that I have so long denied them.

Even though the words are made of ink, there is blood within them; there are tears. Frequently, as I type and tinker away at the memoir, I feel hot tears on my face.

I wipe them away thinking: I must not show emotion. I must distance myself. I must not show emotion. I must I must I must…

But how can I not show emotion? How can I detach myself from my memories, from the things that have happened to me? Such is my internal debate. I feel as if I am arguing with a third part of me, a naysayer that fills me with doubt.

I do not have energy for much else. I am exhausted, tired. I feel lethargic. The only thing that helps is the writing of the words, MY words.

It lets the blueness out.

I know that these words have to be written, that the process has been and will continue to be therapeutic. I know that on the other side of the Blue are other colours: Red and Orange. Green and maybe, hopefully, a wonderfully soft Violet.

But to get to these colours, I have to keep writing. I have to give my words life, let them bleed on to the page.

Then the blueness will fly away.