Birthday Reminders

Posted on August 21, 2007 by Jamieson Wolf

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.

Posted in Doctors, Memoir, People, self esteem, The Past | 2 Comments

A Birthday Dream

Posted on August 16, 2007 by Jamieson Wolf

I did not sleep well last night.

I was dreaming again. I have been cursed or blessed (I’m not sure which) with being able to remember almost all my dreams in photographic detail. Sometimes this is a good thing: a lot of my short stories come from dreams.

Sometimes my dreams are not so good.

Last night, I was dreaming about my birthday. I turn 29 this month; next week actually, on the 22nd of August. Now let it be known that I love my birthday. It’s my day and I don’t have any hang ups about age or aging. I don’t care that I’m turning a year older.

I frequently forget how old I am and have to ask someone to remind me. But for whatever reason, in my dream I was frightened of my 29th birthday. Terrified in fact….

Something (be it age in the form of darkness, wrinkles in a bodily form) was stalking me, hunting me through streets and alley ways and I was doing all I could to get away.

For some reason I was wearing nothing. I ran through the streets naked. I can only wonder if this means I was in my “birthday suit”. I’m sure it has some symbolization, some meaning that I’m supposed to interpret; but I can think of none.

I could hear my hunter getting closer, gaining on me. I ran around a corner and there stood Roy, a friend of my husbands. He smiled when he saw me, no hint of danger on his face.

“Hey Birthday Boy!” he shouted at me.

“Hey,” I replied, breathless.

“Everyone wants to meet you for half priced martini’s at The Lookout.” He said. “How about we go there now?”

I worried about bringing friends and family in contact with the hunter and shook my head. “I’m a little busy now, Roy.”

He nodded and smiled at me. “We’ll meet you there later then. Just come when you’re ready.” He grinned. “I have candles for you. Twenty nine candles. Their flame is bright.”

And then he was gone as if he hadn’t even been there, as if he had been a figment of my imagination. I raced forward and stumbled as I fell into a deep pit.

I looked around me and saw walls of dirt, roots of trees entwining themselves through the muck. I had cuts on my face and hands and could feel the blood running down my face. I smeared some mud over my cuts, hoping that it would cover the smell of blood, so that the hunter could not find me.

I looked around me and saw more dirt, more earth. A shadow fell down into the hole and I looked up at a slab of stone sitting above me, lodged in the grass.

It was my tombstone.

I could barely read the words but, instinctively, I knew what they said. I heard the tune of someone singing softly, and I recited the old nursery rhyme:

Here I lay me down to rest,

A pile of books upon my chest.

If I should die before I wake,

that’s one less test I’ll have to take.

I moaned, a guttural sound, a sound of fright. An inhuman sound and I marveled at the fact that it was coming from me, from the very pit of my stomach.

I heard screaming then, the sounds of terror and pain and I knew that the hunter was slaughtering everyone I knew, everyone I loved.

I could hear my mother screaming for me, I could hear my husband muttering my name softly. I knew I had to act, I knew that I had to do something, that I had to climb out of my grave and face the hunter and defeat it.

I grabbed hold of tree roots that were sticking out of the dirt, grabbed hard and began to pull myself up, digging my feet into the wall of dirt, pushing myself up with my legs, using everything I had.

I had to reach the top alive, I had to….

I woke to a sharp, shooting pain and I know I cried out.

My leg was spasming, my entire left leg, from the tips of my toes to the back of my buttocks. I reached out and touched it and drew my hand back instantly. Pain flared where I touched my leg.

I sat up, breathing deeply and looked over at my husband. He still slept. How could he sleep through all that? How could he…?

And I woke a little more then, knew that everything had been in my head, that the pain had woken me but not him.

I struggled to sit up more, to swing my legs around and put my feet on the floor. I hobbled (there is no other word for it) to the bathroom and sat on the toilet, hoping the cool, cold tile would help my leg, that its coolness would soothe it. I resisted the urge to lie down on its surface knowing I might not be able to get up again.

I held back tears and another cry as more pain flashed it’s way across my skin. I could feel my leg rippling, moving, voicing its protest at such a nuisance. It was beyond anything I had experienced before.

I hobbled to the sink and rinsed my face with cold water and went back to bed, trying to get comfortable but that was next to impossible. Not wanting to be left out of the action, my back rippled and undulated in response, as if it were answering a mating call.

I let sleep claim me once more and thankfully it was dreamless. I hoped that my leg would be healed in the morning. My hope was not answered.

Making my way to work this morning, I tripped a total of eight times. Several people stared at me, one pointing me out to her friend with a smirk, and I felt myself grow hot, my face flushed.

Even now, sitting here, my leg is a stone leg, a pillar of knotted muscle. The knots and the pain, a lingering sensation of discomfort, are making their way up to my thigh and beyond.

I stand and walk around to relieve the pain but then I have to sit because I can’t stand, I can’t support myself with my left leg. But then I have to stand again in a few minutes. It is a very painful game of musical chairs with music only I can hear.

I look at my bottle of Motrin IB and wonder if it’s too soon for two more white tablets. I wonder how they will taste with coffee.

I look at the clock and count down until I can take two more and concentrate so that my pain does not show on my face.

Posted in Muscles, self esteem, Spasms | 1 Comment

Quiet Conversation/Simple Pleasures

Posted on August 9, 2007 by Jamieson Wolf

I am slightly worried.

My legs have been seizing up lately, turning from flesh into rock and stone at a moments notice.

This is not so unusual for me except that normally I have some sort of warning that my legs are going to seize up, that they are going to give me problems.

They will start spasming, little jolts of pain and heat that pinch the backs of my legs or perhaps my thighs and calves. I can prepare myself for what is to come based on the intensity of the spasms.

The more painful the spasm, the more painful it will be when my legs seize up.

I think of my body as an All Weather Predictor. I know when rain is coming based on how my joints feel. I know when it is going to storm by feeling the intensity of pain in my legs. I know how bad my legs are going to be based on how painful my spasms are.

But, lately, there have been no spasms in my legs.

I will be walking along one moment and then the next I can’t walk or I will trip. It is as if my legs just stop working and go out from underneath me.

Several times this week while walking to work I have tripped and nearly fallen when my legs have caught me off guard. It is as if they ware waiting for me to let my guard down, waiting for me to not pay attention.

Normally they talk, they jabber, talking and pinching and poking so that I can hear them, so that their conversation materializes in spasms and the hot lick of pain along my legs, my back, my arms.

But now there is no warning.

Now I take a step and my legs seize up. I have to stop walking and breathe for a moment, taking the air in and out of my body, willing the searing pain to vanish so that I can continue.

I can make excuses for this:

It’s hot out, I did exercises yesterday, I’ve been stressed, I have too much to do, I haven’t relaxed enough today

But the truth is that I don’t know why my body is all of a sudden changing on me, trying to keep me on my toes as it were.

I make excuses, think of little reasons that are filled with hope for why my body is against me. But I make these excuses because I don’t know and this frightens me.

The spasms, when they come, are ruthless now. They are pain beyond anything than I am used to. They’ll spasm when I stand, when I walk. Even while sitting.

It’s the not knowing that is worrying me, eating away at me. But I have resolved not to let it bother me, to push those thoughts back into the darkness of my mind so that I can focus on other things, happier things that make the pain easier to deal with:

Flowers, seeing the sparrows fly on my way to work, the look on my husbands face when I come home at the end of a day, the sound of my cat Mave greeting me when I come home, sunrises that bedazzle the eye, a good book with pages smelling of dreams

There is so much out there to enjoy that, despite my fear, I can only live one day at a time, taking things one step at a time.

And enjoy the simple things that come my way.

Posted in Muscles, self esteem, Spasms, Walking | Leave a comment

Fear/Love

Posted on August 2, 2007 by Jamieson Wolf

I think I frightened my husband last night.

Lying in bed, waiting for sleep to claim me once again, my entire body spasmed at once.

I know I shook the bed, that my husband felt me shake. I don’t think I cried out but I can’t be sure. My entire body felt like one large rock, one large stone that weighted me down, made it hard to breathe.

“You okay?” He said softly.

“Yes,” I lied. “I’m fine. It was just a spasm.”

I could feel my body shaking from its force. The spasm had rocked me, almost like I had been punched. I felt my body protesting this injustice:

My shoulders shook, spasmed and quivered. I could feel my legs moving and their muscles talking in response, a subtle tick tick tick of the muscles. Like they were counting down to something.

“But are you okay?” He asked. I could tell he was worried.

“I’ll be alright.” I said.

But in reality, I was scared. The whole thing had lasted seconds, such a brief bite of time, but it had frightened me, shaken me.

I lay there wondering how I could possibly be afraid of myself, how I could possibly fear something that was part of me.

I wondered, briefly, if there was a way to cut it out of me. I wondered if I would dream when I closed my eyes, what sights I would see behind my eyelids, what colours would dance for me.

“I love you.” My husband said.

And, despite the heat, he reached over and clasped my hand.

“I love you, too.” I said.

And, suddenly, feeling the warmth of his hand against mine, I didn’t feel so afraid anymore.

Posted in Muscles, Spasms | 1 Comment

Abled Not Disabled

Posted on July 27, 2007 by Jamieson Wolf

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.

Posted in Idiots, People, Words | 1 Comment

Pride on the Wind

Posted on July 23, 2007 by Jamieson Wolf

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.

Posted in Memoir, Muscles, Spasms | 3 Comments

A Guessing Game

Posted on July 12, 2007 by Jamieson Wolf

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.

Posted in Muscles, Spasms, swelling, Walking | Leave a comment

Heel Toe Get Up and Go

Posted on July 10, 2007 by Jamieson Wolf

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?

Posted in Muscles, Walking | 3 Comments

Blue Blood Words

Posted on July 6, 2007 by Jamieson Wolf

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.

Posted in Memoir, self esteem, The Past, Words | 3 Comments

A Broken Connection

Posted on June 27, 2007 by Jamieson Wolf

I like to think that my legs are talking.

While writing the other day, I remembered the old story my mother told me:

That my brain was like a hub where all the telephone operators were. All the veins and nerves running through my body are the telephone wires.

Somewhere in my head there is a lazy telephone operator who did not connect the call properly; the signal isn’t getting to my legs properly.

The connection is broken.

I love this image as it is the easiest way for me to understand (and hence explain) what Cerebral Palsy is like, what it does to the body. I also like it because it’s so visual, so easy for anyone and everyone to see.

The other day, while walking home, my legs started spasming again. They were rock hard in seconds, my calves like stone that neither moved nor shifted under my skin.

Instead of being frustrated or repulsed as I normally am, it occured to me that my muscles were talking to each other.

Except, instead of being polite muscles and talking one at a time, they were all talking at once, nattering away until there was nowhere for their voices to go.

Held in by my skin, my muscles filled up my legs until they were heavy with pain, with pulses, with throbbing voices.

I stopped on a park bench, the hot sun on my face, and waited for my muscles to finish their conversation.

Now, you may not know it, but muscles tend to to natter and chatter for far too long. I waited five minutes before I got to my feet again and started to walk.

Almost immediatley, the muscles started talking again, clucking at me with outrage that they hadn’t been given enough time to finish their conversation.

Looking down at my legs, I could feel them throbbing and spasming-no, talking and yelling underneath my clothes. I sighed.

It was going to be a long conversation.

Posted in Memoir, Muscles, Spasms, Walking | Leave a comment