Two Steps at a Time

Even as I sit here writing this, I can feel the muscles begin to knot up.

The days where it’s cold out are the worst. As are the days where it’s really hot. There seems to be no escape from the little nudges and reminders of what I have. Some days it gets really annoying. I keep thinking ‘Can’t I have one day where it doesn’t hurt?’

My body only answers with more pain, more nudges, more little kicks in the leg or my feet. My back has been horrible lately, a mass of hard muscle. Massages don’t do too much good anymore; the knots and the pain go too deep.

I try not to take too much in the way of medication. I don’t like the idea of taking a lot of meds and being doped up, being unable to live. I already have a part of life taken away from me; I won’t lose another part of it.

So I avoid pain killers even though there are some days it’s all I can do not to cry out. There are days where even putting one step in front of the other hurts like fire on the soles of my feet, but I’ll keep walking until the day I die.

So I guess maybe I’m a little stubborn.

It’s funny, really.

I was in university and I remember one of my roommates telling me that I must be so angry. That I must be so enraged at the world because of everything that had happened to me. He said I must be so angry because I’ve had to struggle to much.

I told him he was wrong.

I’ve always had to struggle with things. I can’t tie shoe laces properly and had to learn a cheaters way. I have immense trouble with buttons and they continue to be the bain of my existence; I can’t seem to get the buttons in the holes. Because of the Cerebral Palsy, my writing is really horrible as I was never able to develop better motor skills so I type almost everything. I have a lazy eye, a common side effect of CP, and look with only one eye at a time.

But I don’t let this bother me.

My mother thinks it’s because I’m stubborn; that I don’t want the world to see me getting down, to see me getting frustrated, so I just trudge on. She’s partly right.

Most of it has to do with the fact that I’ve lived with it for so long that it’s become second nature to me. It’s become part of who I am. But not all of who I am. Sometimes, when people look at me, they see a cripple, a disabled person, a freak.

I’d much rather they look at me and see ME, not what’s on the outside.

But none of this makes me angry; I told my roomate back in university that. How could I be angry when there was so much to live for? No, I couldn’t join any sport teams or play hockey (not that I really wanted to, but that’s our secret), no, I couldn’t do a lot of the things that others could do, but there is a lot I can do.

Why focus on the bad when there’s so much good in the world?

Growing up, I always knew I was different. Every year on my birthday, my mother would tell me the same story. “When you were born, the doctors told me that you would die.” She would say.  “They didn’t expect you to live past your first night. One doctor told me that I would be better off to put you in a home.” Here she would smile. “You can guess what I told him.”

Growing up, she tried to explain to me why I was different from other children. “You were born with Cerebral Palsy.” I didn’t know then what this meant, so she tried to educate me in simple terms “Think of your head like a room full of telephone operators,” she would say. “All the nerves running through your body are the telephone wires. Somewhere, the wires are cut and the telephone signal isn’t getting through clearly. Do you understand?”

I nodded. But it wasn’t until year later that I understood. I was born three months premature with Spastic Cerebral Palsy; this made it difficult for me to walk, affected my balance and my motor skills. As a child, all I knew was that I was different and I hated myself for it. I would look at other kids able to run track or play sports; I would dream of doing that. I watched how others would walk with their feet straight, not pointing inwards like pigeon toes.

Others would tease and ridicule me because of the way I walked. I would run home to my mother, crying my eyes out, telling her of the injustices I had to suffer through. Drying my tears, my mother would hold me and tell me to dry my tears. “There’s no use I crying about it,” she would say. “What’s done is done. You were born this way, you can’t change that.”

“I want to be normal.” I would say. “I don’t want to be different.”

“You’re not different.” She would say. “You’re special. Do you know that when you were born, the doctors said that you shouldn’t be living, that you should have died? One doctor came to me after your third night and told me you had defied every medical law in the book; by all rights, you should have died. He said you were God’s Child now and that he was looking down upon you.”

“I still want to be normal,” I said. “I want to be like everyone else.” I would huff. My mother would smile at this and pull me closer. “Now where would the fun be in that? And what is normal? You’re God’s Child because you were put on this Earth for a reason. No one knows what that reason is but you; only you can know that. But I’ll tell you something else. You have to listen really closely. Are you listening?”

I would nod my head and she would continue. “Everyone else is going to want to treat you differently. You can’t let them. You have to do everything for yourself and you’re going to have to work twice as hard as everyone else. But I don’t ever want to hear the words I can’t from you.”

“But there are things I can’t do.” I would say. “God made me this way; I don’t think he likes me very much.” My mother smiled at me. “Nonsense. You can do anything you want to do, as long as you wish it hard enough. You have to prove them wrong. You’re stronger than you know.” She would rock me softly, and I would grow sleepy. “You’re more normal than you give yourself credit for. You yearn for acceptance; you want love, just like everyone else. But you’re special because you’re different, because you’re not like everyone else. This makes you unique.”

Again, it wasn’t until years later that her words made sense to me. At the time, I figured she was just trying to placate me, to make me feel better. But over time, I realized what she was trying to tell me: Everyone has special needs. Some are just different than others. And we are all God’s Children.

I went grocery shopping today.

There are days where walking is difficult. Where my feet turn in like pieegon claws, where I can stumble as I step. When I’m walking, I usually feel as if people are gawking at me, starting at me as I walk.

I sometimes have to concentrate hard on putting one foot in front of the other. Today I try to pass by a couple, a man and a woman; I stumble and trip over my own feet. They turn to look at me, the man laughing softly. They do not ask if I am alright.

I walk past them as quickly as I can and I hear the woman remark to the man: “Look at his feet.” She says this softly in hopes that I can’t hear.

I trudge home, groceries in hand, feeling like a sideshow freak, thinking that maybe it is everyone else, and not me, that is freakish.

“Why did you do this?” my mother asked.

 I had told her about this blog. She knows that I’ve never been a very open person where my disability is cocerned, that I suffer in silence more often than not.

“I couldn’t tell you.” I said. “I felt complled to do it.”

“It made me cry.”

 “I didn’t mean to make you cry.” I said. I hated it when she cried, even if it was happy crying. It always made me feel sad. “That wasn’t my intent.”

“I know,” she said. “But it’s a proud kind of crying, you know what I mean?”

I think I did.

The man who joked about me being a cripple apologized today.

I wasn’t expecting an apology, nor did I really care for one. But he felt compelled to give me one.

“I’m really sorry about yesturday.” He said.

“Forget about it,” I replied.

“But I’m really sorry.” He said. “I had no idea.”

“Why should you have had any idea?” I asked him. “It’s not like I wear a sign.”

“If I had known…”

“If you had known you wouldn’t have said that? You wouldn’t have asked me if I was a cripple?”

“Yeah,” he said.

“What difference does it make if you knew or if you didn’t know?” I asked him. He looked baffled and I felt momentarily sorry for him. “Look, thanks for the apology, Okay?”

He nodded and said okay but avoided me for the rest of the day, as if he was no longer sure how to talk to me. Perhaps he was afraid of offending me again.

I’m used to being alone and, after years of being who I am, have grown a thick skin. But I also know that, once again, I’ve lost someone to talk to because they aren’t able to deal with something I have.

Once again, I embrace awkwardness and wear it like a shawl. It follows me everywhere, like a puppy or a small child.

Sometimes I wish the puppy or child would stay home, so I could have one day to myself without feeling like everyone was looking at me.