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….

A Gentle Quiet

I have been quiet lately.

 

This is not due to depression, thank goodness. It is simply due to the fact that life has taken me up in a whirlwind and has only just put me down again. For the past while, I’ve been consumed in a routine: Go to work, go home, write. Go to work, go home, write. Can you guess what I’ve been writing?

 

I’ve been writing my memoir titled One Step at a Time. So, while I have been quiet, I have been active. And I have some amazing news to share with all of you:

 

The memoir is finished.

 

I wrote the last page just under a couple hours ago. If I still smoked, this would be where I would light up a cigarette. Though I can’t compare the experience of writing this memoir to sex, I can compare it to a journey.

 

And, indeed, it has been one. It has helped me heal more than I thought possible and I have learned more about myself while putting its words down on paper than I thought I could know.

 

One thing is clear to me, however: this is the most important piece of writing I have ever written. It is certainly not my favourite as it’s caused me many sleepless nights, nightmares, temper tantrums. You name it and I’ve had it because of writing this book.

 

But I’ve never had the feeling I do now of being free; of having a weight lifted off of me, a weight that I wasn’t even aware I was carrying. The chalice that rests inside me finally feels whole again and I can breathe without feeling any pain.

 

That’s not to say that my Cerebral Palsy has all of a sudden gone away, my family has welcomed me back with open arms and everything is okay. But it does mean that I feel better about myself now, I feel better about being me.

 

I couldn’t ask for anything more.

 

Now that the memoir is finished, I can finally get back to regular blogging, regular writing and other projects that have sat by the wayside. I’m giving it a day and then I’m going to delve into a read through and a little bit of editing.

 

Then it’s off to the publisher.

 

I only hope that the publisher enjoys it. It is my sincere hope that they do and that they do not find it too depressing or badly written. I’ll have to cross my fingers and toes but not my eyes. I’d bump into things that way and I do that enough already.

 

I’ve also submitted a proposal for a second memoir to my wonderful publisher. I can only hope that I’ll be able to continue my story. So, much like before, I will have plenty to worry about.

 

But I also have plenty to be joyous about as well.

 

One (or rather several) of those things is you. Yes, you, reading this blog right now. You have read my words, found enjoyment from them and been enlightened by them. You have sent me emails and comments letting me know how touched you are by my words and I can’t thank you enough.

 

I write for me, for myself but it is a treat, a pleasure and a privilege to write for you. So thank you, reader. I’ll be back on track in a day or two. Your patience means the world to me.

Now that one story is finished I can finally continue to tell another.

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.

A Birthday Dream

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.

Quiet Conversation/Simple Pleasures

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.

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.

Mirror Me

I’ve been looking at myself in the mirror a lot lately.

I wonder, however briefly, how someone can love someone that looks like I do; knobby knees and legs that are too long. Muscles that spasm and shock the body, making me hunch over.

I have been saddened by my body lately, not just by my legs. I know that everything is connected, that the pain I feel when my body spasms takes over my whole body, my mind, not just the area that is convulsing.

The pain goes into the skin, under the skin. I can see it like an ink that floods its way through my blood, through me, filling me with doubt and with dismay which always seem to go hand in hand.

Another spasm fills my legs like water, like stone, and I wonder if the stone will pull me down one day when I am not looking.

At the same time, I think of The Good Things, I count, I breathe.

I breathe.

And the stone melts, waiting for it’s chance once again.

The Dark Mark

I had my first year wedding anniversary on Saturday.

I can’t believe it’s been a year that I’ve been married. I also can’t believe that Robert and I have been together for almost three years. It seems like a few months.

Something occurred to me yesterday while I was still basking in the glow of the newly married: I no longer consider myself a freak.

There was a time, not so long ago, where I felt my having Cerebral Palsy branded me with a mark others could see; a mark that said: Dangerous Waters, Careful All Who Tred Here.

Sometimes I felt as it were a large neon sign that flashed above my head in seductive reds and yellows; maybe a bright flash of blue or gold. Always drawing attention to the fact that something about me just wasn’t right.

While I still have issue with my self-esteem (who doesn’t nowadays) it’s been a long time since I’ve felt marked by my disability.

I also realized yesterday that most of this has to do with my husband. He was the first significant other who saw just me, only me. Not “Jamieson who has Cerebral Palsy” or “Jamieson with the Gimpy Legs” or “Jamieson with the Lazy Eye”.

I am not freakish. But instead freakishly beautiful.

Robert sees only Jamieson. He sees only me.

And finally, I am able to see myself.

Remembering the Forgotten

It is amazing what we teach ourselves to forget.

I knew that writing a memoir based off this blog would not be an easy thing to do. This is mostly because I knew the memoir would cover everything in my life; not just the fact that I have Cerebral Palsy.

I know for a fact that nothing in life is ever easy. This only inspires me to try harder, to try again and to try more. But I have never really tried to remember.

Writing the memoir has been slow going mostly because I knew that if I started writing, memories that I have tried so hard to forget would come to the surface again.

It’s not easy to welcome these memories back into my life. I forgot them for a reason, I closed them away in the hat box of my head for a purpose: so I could get on with my life and focus on the now instead of than.

But memories are pesky little things; they cry and moan and shake with indignation until you open your arms to them, until you notice them.

In writing my memoir, it’s amazing to remember what I had forgotten:

*The first time my father hit me.

*My mother trying to explain to me what Cerebral Palsy was.

*Hiding in a closet, hearing my father raging, looking for me, knowing he would find me and I would not like the outcome.

*Seeing my twin brother taken away by the police.

*The first night that I slept on the streets.

*Eating food in shelters and half way houses, grateful for the first meal I hadn’t had in days.

*Learning to walk without showing the pain in my face with each step I took.

*Dating girls because it was what was expected of me growing up.

*The last time I saw my brothers and sister, ten years ago, and how my younger brother Jeffrey was afraid to hug me, to come near me.

*The first time I kissed a man and knew it felt right to me, that I had found that piece of myself.

I feel as if I am going on an internal scavanger hunt, that I am hunting for pieces of myself, piling them in this large basket that is almost too big to hold on to.

And somehow I must place this all together. Somehow, I must take this puzzle of me and put the pieces together.

It is a mammoth task and I have always loved a challenge. But I never thought I would be up to the challenge of me.

The writing of Head Above Water (the working title…I can’t just keep calling it The Memoir. That makes it sound too grand) has been therapeutic but also gut wrenching.

I sat down this weekend to write and started balling at my computer as I was typing away. I am not normally an overly emotional person; but everything just came rushing back, slamming around the inside of my head.

If I close my eyes, I can see a mass of hands, waving like a field of poppies. Each is a memory and each is yelling the same thing:

Pick me, Pick ME, PICK ME.

Things Come In Threes

I have been in pain for three days.

It started two days ago. Kisses along my legs like razor blades; Elephant Man legs. Walking to work hurt so much that I had to sit down when I got to the bus stop. I could not stand; there was no way my legs would support me.

Sitting on the ground, I felt the muscles begin to loosen slightly, only a little bit. I sat on the ground resisting the urge to cry. I haven’t felt that much pain in a very long time. Normally I’m able to ignore it, to push it away.

I couldn’t. Not even counting helped.

Going home, I barely made it. I could barely walk up the stairs to my apartment. I had to take it one step at a time, slowly making my way to the top when it looked so far away. I didn’t think I would make it, but I did, through sheer will and stubbornness.

I went to be thinking “At least that’s over. Tomrrow would be better.”

Yesterday was worse.

My leg muscles flared up almost as soon as I started walking for the bus stop. I couldn’t believe how quickly the pain came on, how fast the spasms started.

It seemed that Cybill Paulsen wanted to stop me from walking. I would not give him the satisfaction.

I got to work but my legs did not loosen this time. The spasms increased through out the day. During a conversation with one of my co-workers I had to stop talking. My back spasmed along with my legs.

The pain was sharp and jabbed at my right lower back. It hurt to breathe for what felt like years but I’m sure it was only seconds.

“Are you alright?” she asked.

“No.” I said. I had never said that out loud. “No, I’m not.”

She gave me some Motrin but it did no good. I took another two, and another two. The pain did not go away, it did not lessen. Nothing could quiet the twin who raged so loudly inside me.

Going home, I stopped to pick up chips at the corner store and had to walk up steps. I eyed them cautiously, warily. It seemed my life is defined in steps and yesterday I hated them with a passion.

I felt a tear form in the corner of my eye as my legs spasmed again and I wiped it away. I took the steps one at a time and hated them.

This morning, it was a replay. I felt my legs tensing, but today I wouldn’t give in. Today I would not think myself weak or give in and show any pain.

Today I did not sit at the bus stop. I stood, feeling my muscles tense and un-tense, clench and unclench. I stood firm, trying to count in my head, trying to count.

Today was not as bad, though I can still feel pain elsewhere. My jaw is sore from clenching, my feet and ankles are swollen. I feel as if I am a walking bruise and I do not like this feeling.

Already I can feel the muscles in my legs tingling, waiting.

I wonder what the walk home will bring.