Hanging On for the Ride

Posted on January 16, 2014 by Jamieson Wolf

Two steps at a Time coverThe ups and downs of my body like a ride of sorts. Since I can’t drive, I think of it like a bus ride.

There are days where I feel like I’m almost myself again, where my body is almost like it was. I can walk without my cane and I’m just carrying it. I go without it at home and short distances at work.

Then there are the other days, where I even take the cane to the washroom, just to be careful, it just depends on my body that day.

Today was an incredible day. I had to stand on all the busses I took to and from work. No one got up to give me a seat and only one driver got on the intercom to ask for someone to give me a priority seat. Nobody got up, but that’s okay.

I had to hold on to the poles as the bus moved. That’s something I haven’t been able to do in more than a year.

I rode the bus like I used to: squashed in and standing as the bus moved along. It was odd and kind of freeing being able to do that again. I proved I could do it. I got even more daring at lunch, leaving it at my desk. I figured that if I could remain upright on a moving bus, I could do anything.

I don’t know what tomorrow will bring me,  what my body will do, but I’m thankful for today.  I remained standing on a moving bus and didn’t fall down. That made me feel like a super hero.

I wonder what my name would be? The Wolf? Mr. Awesome? Hmmm, probably need to work on that.

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Falling but Thankful

Posted on January 7, 2014 by Jamieson Wolf

Two steps at a Time coverI fell tonight.

It wasn’t coming home along the sidewalks that have become ice rinks. It wasn’t as I was taking the bus or picking up something at the grocery store. It was in my home.

I came in the front door and put what I had bought at the grocery store on the counter. Then I went to walk over to the couch and the floor came up to meet me.

I tried to get up, trying to brace myself against the kitchen counter, but couldn’t. My legs gave out under me and I fell back to the floor. They wouldn’t work, wouldn’t move. As I lay there on my kitchen floor, my legs started spasming.

It was beyond anything I had felt before, as if my legs were filled with hot knifes and needles, broken pieces of glass.

I could do nothing. All I could do was lay there, still in my winter coat, and let the spasms pass. It took about fifteen minutes, lasting longer than any spasm I’ve had before and I’ve had plenty. Before the Multiple Sclerosis hit and Max showed his face, the Cerebral Palsy spasmed many times through out the day, but now like this. Cybil Paulsen’s spasms were painful but brief, little reminders that he was there. This was something else all together.

I lay on the kitchen floor and waited. I counted through the pain, trying to control my breathing, trying to ignore my legs. They weren’t moving. Though they remained still, it felt as if they were moving all over the place. I talked to them, begged them. I just kept repeating “Stop it, stop it, stop it, please stop it.”

Eventually, they listened. The spasms stopped.

I lay there for a further ten minutes after the spasms stopped because I wanted to make sure they were done, that they had gone away. My legs were tree trunks of muscles and when I stood, I cried out. Pain flared in my legs, hot and bright.

I stood there for a moment, testing the strength of my legs. I took a step and then two more. Then another.

I shuffled to the bathroom to have a warm bath to see if that would help relax my legs a bit and it did. I had trouble getting into the tub and almost slipped and fell into the water but caught myself. Needless to say, I didn’t stay in the bath for very long.

I made a cup of tea. I sat with a book. My leg muscles had hardened and are still hardened masses of muscle even as I write this. However, all this is okay. I did what I could not have done a year ago.

I got up. I was not confined to a bed or to my couch. I was not a prisoner inside my own body. I got up and I will get up again.

For that, I am thankful.

Posted in Muscles, Spasms | Leave a comment

One Year Ago I Met Me

Posted on December 30, 2013 by Jamieson Wolf

Two steps at a Time coverTonight marks one year.

In 2012, when I woke on December 31st, my life as I knew it changed forever. I remember the evening  of the 30th well. It’s been haunting me all day.

On December 30th, 2012, I came home from work and made dinner. I watched an episode of Gilmore Girls. I read a little and wrote a lot. I was working on The Other Side of Oz and had reached a crucial plot point.

I had some chocolate and then read until bedtime. It was a normal evening, except for one thing. Every time I went to have a cigarette, my hand would go numb. I would lose all feeling in my digits and I would drop the cigarette. My left arm had been sore all day-it was so bad that I had taken some robaxoset. I never took anything stronger than ibuprofen.

My whole left arm ached. It throbbed like a tooth and nothing I did eased the pain. I switched to the other hand, but dropped it too. Eventually I stopped smoking all together that evening.

I made a tea and took my book to bed. I read until I was tired and went to sleep. When I woke, the world I had known was gone.

I remember waking, stumbling into the kitchen. I could barely pour myself a coffee.

I took a few sips. I always had coffee before I did anything. I remember sitting for a bit, hoping the dizziness would go away. Then something rebelled in my stomach. I ran to the kitchen sink and was violently ill.  I called in sick to work and went back to bed. I thought if I slept for a few more hours, I would be okay.

When I woke again, it was worse. I could barely sit up, the whole room spun around me. I knew something was wrong.

It took eight months. Hundreds of days, thousands of hours, not knowing. It was misdiagnosed as Labryntitius but, as it continued, I knew it was something different. From January until April, it didn’t have a name. Then it did.

After more testing, more appointments, more uncertainty and another four months of waiting,  I knew what kind of Multiple Sclerosis I had. I knew what I would have to fight. Now I could begin again.

It’s been a year of tension and angst, depression and heartache. It’s been a year of uncertainty, regret and remorse. Tonight I am letting all of that go.

I had to learn to do everything again and I did. I had to learn to walk again, speak again, write again, eat again. I had to relearn how to do everything I used to know how to do. It has been a long journey and an uphill climb. It has been a struggle, but I learnt a lot about myself along the way.

I found out what I am truly capable of, what challenges I can overcome. I learned that anything is possible if you put your mind to it, no matter how big the goal, even if it’s taking that next step.

Tonight marks one year when my life changed and I got to know myself again. And you know what? I really like the person I’ve become.

He’s pretty freaking awesome.

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Recognizing the Warning Signs

Posted on December 22, 2013 by Jamieson Wolf

The weeks leading up to the Holiday Season are tough going for a lot of people; but it’s what you do. You have to see all the friends and loved ones over the holidays, spreading joy and doing what you can to brighten the world. At least, that’s what I think it’s what their for.

Two steps at a Time coverThis week has been incredibly busy. I had dinner out from Monday to Wednesday with some awesome friends that are more like family. Thursday was the day of the two potlucks and Friday was dinner out for a friends birthday at a murder mystery dinner.

There were a few warning signs from Cybil and Max that I needed to slow down, that I needed to bow out of something, take it easy, that I didn’t have to be busy for every second of every day.

By Thursday, my body was knackered. It was shot. More than likely a combination of lack of sleep (I was getting to bed at 11PM every night when I normally go to bed at 9PM) and fatigue on top of that. Then the pain had kicked in again. I was tired and I was done. I was toast.

During dinner out on Friday one evening, I was able to get to the restaurant, I was able to get to my seat. I was exhausted, but I was there. Then I had a beer and things went on a downward spiral. Alcohol hits my body hard now-it seems I’ve gone from being a cheap date to a bargain special. When I tried to get off the bench to go to the washroom, I found that I couldn’t.

I wasn’t able to get my body into a standing position. Two friends eventually had to pull me up so that I was standing. My legs were all over the place and I could barely walk with the aid of my cane. A friend had to walk behind me to make sure I stayed up straight.

I was able to get back from the washroom and sit down. When I got up again at intermission, I had the same issue. I had switched to coke by that point, half the beer left untouched. The walk was still difficult but I made it back to my table after. I knew I had to go home as soon as the play was over, that I had to go home and rest. I declined to go dancing with them afterwards.

I left the party and walked out into a torrent of snow. Merry freaking Christmas. It had been snowing lightly all day, but now the roads and sidewalks covered in a thick layer, like a white blanket.

I tried calling a cab but it was impossible to get through. The roads were terrible and everyone was trying to get a ride home. I knew I would have no choice to walk until I found a cab or could take a bus.

I went past a hotel and there were none in sight. I walked down York, down Rideau. There was a moment I didn’t know where I was directionally; all I could see was snow. I was walking down Rideau and was lucky enough to grab a cab. It took me over an hour to get home and the cab half of those minutes.

I woke in the evening feeling warm and very hot. My head was full of marbles and I could feel the beginning of a cold. I woke up this morning with a low grade fever and feeling very unwell. I had not taken the time I needed to rest, had not heeded the warning signs and now I was sick.

Other than a brief but slippery trip to get some cold medication at the pharmacy, I’ve stayed home today. I’ve rested, I’ve relaxed and read. Those are three R’s that I’ll certainly have to get behind from now on.

I’m just coming to terms with what MS is. It’s an autoimmune disease. I keep thinking of it as a disability because that’s what I know, but Max is a whole other kettle of fish then Cybil. I have to recognize that it’s okay not to fill up every moment of every day, that I don’t constantly have to keep busy or always doing something. My body needs rest on a daily basis to heal itself however temporarily.

I have to recognize the warning signs and slow down when they start showing up. I have to listen to what my body is telling me and learn everything I can about it. I have to listen to me.

Do I regret pushing myself so hard though? Not a bit. I saw all the friends that are part of my extended family that are more like brothers and sisters to me than friends. The Holidays are about spending time with the people that matter most to you in the world. I wouldn’t have had it any other way.

The fact that I’ll be resting at my parents place for Christmas time really does help, though.

Posted in Autoimmune Deficiency Disease, Spasms, Walking | 1 Comment

A Cloak of Needles

Posted on December 20, 2013 by Jamieson Wolf

Two steps at a Time coverIt started last night.

I was sitting at a potluck dinner table. I just remember feeling a blinding red flash of pain cross my shoulders. As I sat there, it ran down my spine and through the rest of my body. It was as if the needles that normally filled my body had found a way out and were settling over me like a cloak.

As the night wore on, the pain became worse. I normally live with some sort of daily pain or discomfort, but never anything like this. It took all my concentration to focus on the conversation around me, what was going on; all I could see or hear or sense was the pain.

Sleeping was near impossible but I drifted off eventually. The needles went into my dreams and my sleep was fitful.

This morning when I woke, my entire body hurt: my legs, my arms, my feet, everything. My shoulders were wearing a mantle and my body once again wore a cloak of needles. Even as I sit here typing this, my legs are throbbing, my muscles spasming. My arms and body are heavy, my entire body hurts.  I have not experienced pain like this with the Cerebral Palsy, so I know the chronic pain is down to the Multiple Sclerosis.

It is as if every time I breathe, it pulls the needles deeper. Every step makes new needles in my cloak and it’s impossible to get comfortable; but I continue breathing. I walk slowly but I’m walking. I move slowly, but I am moving.

As long as I do that, I know that I’m alive. As long as I do that, I am living.  One day at a time.

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

“It’s hard to walk today”

Posted on December 20, 2013 by Jamieson Wolf

Two steps at a Time coverI had trouble getting off the bus this morning.

The driver stopped in front of the mall instead of at the bus stop. Thus, when I got off the bus, I was partially in the street. A few cars honked at me as I made my way forward. As I was making my way towards the sidewalk, a hand reached out and grabbed my arm.

“It’s hard to walk today.” A women said. “Let me help you.”

She helped me step over the snow bank and onto the sidewalk. “Are you all right?”

“I’m fine. One step at a time.” I told her.

“I used to have chronic pain too,” she said.

“I have MS”

“You should do Qigong. It’ll help. I did that and Tai Chi and Yoga and look at me now.”

“What’s that?”

“It helps to stabilize the mind and the body. You should adopt that and meditation. It’ll help.”

“I’ve already started a meditation regime.”

“Then your half way there, just another step to go.”

“Two steps at a time, right?”

“Oh no, the steps are endless if you’re on the right journey. I had chronic pain and lived with it for a long time. You have to make the choice not to be the disease. You have to rise above it.”

“I’m working on it.”

“I know you are. But it’s not an easy process. It took me eight years. I had to walk with a cane for as long as I could remember. But I don’t need one now and neither will you if you believe.”

I couldn’t help but smile at her, she was so light hearted. “Thank you.” I said to her.

She clasped my hand. “Merry Christmas and I’ll pray for you if you let me.”

She hailed a cab and walked (or drove) out of my life, but once again, I believed in angels.

Posted in People, self esteem | Leave a comment

Flashback Falling

Posted on December 15, 2013 by Jamieson Wolf

Two steps at a Time coverI had another fall yesterday.

Before I got sick in January, I had a fall down the back steps in my apartment building. I was taking out the trash and was coming back inside. It’s a relatively small flight of nine steps but the stairs are narrow. I took a step down and another and then I fell down the rest of them. I landed hard enough to cry out and I bruised my backside. For days, I had trouble walking and alcohol made it worse. My left leg became heavy when I drank.

My hands were numb for days and I kept dropping everything. I was taking Ibuprofen for the pain but the numbness wouldn’t go away. I thought the fall happened due to my Cerebral Palsy. However, two weeks later, on December 31st, I woke up with MS. It took a while for the actual diagnosis, but the fall preceded the moment my life changed and became what it is now.

Yesterday, I thought I’d be active while I had the energy and take out the garbage and recycling. Stairs are still a problem for me but I’m especially careful on these stairs. I don’t trust them. I know that I should probably wait for someone else to take the garbage out, but none of my other neighbours ever empty anything. Someone has to do it.

I was coming back in with the empty garbage can and took a step down. I was trying to be careful but my foot slipped out from under me, exactly as it had done last year. Several thoughts ran through my head at once: This was the exact same place I had fallen, I was doing the same thing, wearing the same boots, everything was the same.

The garbage can flew out of my hands and I reached out wildly for the railing and was able to grab hold of it. My fall was more of a gentle slide this time and I only went down a few steps. I sat there on the steps wondering if it was all happening again.

The fact that it had happened the same way caused me to flashback to last year. I forced myself to take deep breaths and to stay calm. I got up and took out the recycling, going around the front of the building this time to avoid those stairs.

All though out the day, I waited. I don’t know what I waited for, be it numbness, pain, but there was nothing. When nothing happened, the flashbacks that filled my head went away. I was able to carry on with the day, to go to class and get out, to not be afraid.

Through out today, I’ve waited again for a sign of something going wrong or something waiting to happen but I’ve been spared this time. I think the thing to remember is that I can’t wait for something to happen, or I will shut myself away again.

The fall wasn’t the same, flashback or not. I’m a different person, a stronger one.

Every time I fall, I have to get back up, I have to keep going because there is still so much life left to be lived.

Posted in Falling, Muscles, Walking | Leave a comment

Limitations of the Labyrinth

Posted on December 8, 2013 by Jamieson Wolf

Two steps at a Time cover They used to call me the Wolf that never sleeps.

In 2012, I had the great fortune to have twenty three books published in the year. In 2011, I had fifteen books released, in 2010 there were thirteen. I worked full time and came home to write. I would be working on a novella and novel at the same time, as well as editing one or two other books.

I wrote book reviews, taught workshops online, wrote columns, created book videos for authors. I wrote scores of poems and created abstract pieces with oil paint, cante and mixed media, I designed a cologne. I never stopped and there was always another story to tell in one way or another.

Friends and readers called me that, accusing me of going without sleep.

Then, with the arrival of January 2013, I was silenced. I couldn’t write for a few months. As I got better, when I need to find my voice again, so I started to write. I had to teach myself to type all over again, but I was lucky to finish one novel this year and then lucky enough to finish another. I’ve started on a third, but haven’t had anything published this year except for what was in the pipeline. That doesn’t matter though.  I just focused on writing those two novels. They helped me to get better.

I keep trying to convince myself that I’m just as I was. This leads me to push beyond what I know that I’m currently capable of. I always try to do too much, it’s always been a bad habit of mine. Limits are a hard thing for me. I’ve always been stubborn. I guess there’s a reason I am a Horse under the Chinese Zodiac. I’m also a Leo, so that doesn’t help; and I’m pretty sure that I was under a Taurus moon sign (but I’m not entirely sure).

I have my moments, where I don’t really need to rely on my cane, where the disability and disease are behaving themselves and Cybil and Max are quiet. Moments where I’m almost as I used to be. It is only as I try to do everything that I used to do that they step up and make themselves heard.

Sometimes, there are a few hours where I’m able to walk without needing my cane, my third leg, when I’m out and about. I’ve often thought of naming it. Does anyone know if Mary Poppins’ umbrella had a name?

The other day, I had a full day of work, went shopping did groceries and came home and started to clean house. I wanted to do what I used to do on Thursday nights and that also included a list of chores: wash the floors,  the bathroom, vacuum the apartment, dust, toss out the trash, do the cat litter.

Then I had plans to write some more of my current work in progress while eating dinner and perhaps watch a bit of TV or enjoy some time with a good book.

I used to be able to do all of that in one evening. Now, I find that I don’t have enough time. Everything takes up so much time and energy. I knew I was over doing it the other night, that I was pushing myself beyond my limitations. I like to think that I have none.

I was able wash the bathroom, and tidy up a bit. However, by the time I was finished washing the bath tub, I was off balance and over heated. I had to use the wall to hold myself up. I pressed on with washing the floors and the toilet and that was all I could do. I had to nix writing, vacuuming, dusting. cat litter, garbage, kitchen floors.

My body wasn’t my own after that. I was wobbly and all over the place. I was the weeble wobble and my body wasn’t completely mine. I don’t know if it was Cyble or Max driving, but somebody was and it wasn’t me.

I relaxed and watched a movie, but if I got up, I was unsteady and unbalanced. I was able to sleep it off and have a day where I was good again for most of the day, but I was still off balance a little. I went to meet a friend at Starbucks and had difficulty getting out of the booth at one point. It can come up when I try to do the simplest of things.

It’s almost like I’m looking at a Labyrinth or a reflection of one. I can see the way into it and the way out, but get confused once I’m in the maze. If that makes any sense.

Then I had a good day and a decent Saturday. When it came time to go home after class, I went to the bus stop to find that the bus would be another 38 minutes. Despite the episode I had while cleaning the other day, I decided to walk home.

The walk started out all right, but by the end of it, I was shuffling along and ten steps seemed like twenty. My body was pushing me backwards. I got home and I just rested. Thankfully, today has been a good day.

Perhaps the way to think of it is not knowing my limits, but respecting them. I have to recognize when I’ve tried to do too much and learn to relax; for a Wolf that never sleeps, this is the hardest. Knowing what I was able to do then versus what I can do.

That’s the thing, isn’t it? I can do anything I put my mind to. It might take longer, be more difficult to do, take a lot of my energy levels in the process, but I can do them, and the possibilities of what I can are limitless.

Posted in Muscles, Spasms, Walking, Words | 1 Comment

Getting Up Again

Posted on December 3, 2013 by Jamieson Wolf

Two steps at a Time cover

Today I had a fall at work.

It was really quick and fairly painless. I went to get back into my chair and lost my balance. The chair slid away from me and I was on my knees. I had fallen into my cubicle wall in an effort to stop myself from falling. I wasn’t successful. I’m still not sure how it happened.

I got up off the floor and sat in the chair. I’ve fallen lots of times, but it’s only one of a handful that’s happened at work. The other times, it happened in front of people I don’t work with. This time it did.

Every time I’ve fallen, at work or not, there is always this feeling of embarrassment. There is always this slight mortification. Then afterwards, there comes the anger-be it at myself or my body.

The fall this time was different not only because it happened in front of people I work with, but also because I was okay with it. No anger, no embarrassment, no mortification. I know that they may rear their ugly head again, that they will try to come back. I just have to choose not to listen to them.

Every time I fall, I will get up again and I will take those first steps. They can lead me anywhere.

Posted in Balance, Falling | Leave a comment

Conquering the Flat Mountains

Posted on November 24, 2013 by Jamieson Wolf

Two steps at a Time coverYesterday was an interesting day. I’m still coming to grips with understanding my body. Normally, with the Cerebral Palsy, there is a warning before my body goes haywire; spasms in the legs or body. Now there are no warning signs and Max does what he wants, acts up when he wants. I just have to deal with it.

Earlier in the day, I was walking down Elgin and my legs started acting up. It was as if I had stepped on a minefield. My legs didn’t want to cooperate. It was like they were on spring boards and I had no control over the direction they were going in. I knew I had to sit down, had to rest, and the coffee shop was only a few doors away. It might as well have been miles. I couldn’t walk very well so every step was a small torture. I kept having to right myself from falling over, from giving in.

I made it to the coffee shop. There were stares as I walked in, but I let them look. I was only concerned with having a seat, just sitting down for a moment or two until my legs righted themselves. Thankfully coffee helped.

Then, later that evening, I faced a different kind of nightmare.

It was dark out. I left class and went to the bus stop. After standing in the cold for fifteen minutes, I checked when the bus would be coming. The bus wouldn’t be arriving for another thirty-five minutes due to bad weather. I couldn’t stand for that long.

So despite the complications of walking home, and what had happened earlier that day,  I chose to. The wind was fiercely cold, as if it were knives in my skin. but it was rather pretty having been the first snowfall of the winter season.

It was a long walk but I just looked at the freshly fallen snow. I thought how different the land around me looked with a coating of fresh snow, how it cleaned away everything. I tried to picture the same thing happening to my body.

I turned on to Gladstone. I couldn’t walk in the road, I kept slipping on the ice and snow, so I moved to the sidewalks. I almost fell twice, trying to navigate the cement that was like a mountain.

Eventually I made it home. It happened when I was finally able to sit down, to stop for a moment. When I tried to get up again, my legs would not cooperate, would not listen to what I needed them to do. Even making a cup of tea was difficult. They were spasming and shaking so much, filled with needles and shards of glass.

It didn’t matter. I had made it home in one piece, I had conquered the flat mountain and my body, doing what I thought I wouldn’t be able to do. It was a small battle but I had won.

I just have to keep on winning.

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