113 Steps

539893_484145031601515_1621960854_n-111When I started my exercise regime, Sarah Zahib of Continuum Fitness asked me what one of my fitness goals was.

I thought about it for a moment. “I’m always asked to do this thing for my neurologist where I have to walk heel to toe across the room. I’d really like to be able to do that one day.”

“You will. I’ll help get you there.”

I started working out in 2014. The first time I did that exercise for my neurologist, I couldn’t even manage one step. There was no way that I could get my body to do what I wanted it to. In 2015, I managed one step heel to toe; in 2016, I managed three steps, but both of those times, the neurologist helped me to balance. I could not do it alone.

It’s incredibly frustrating. How could something so simple such as walking heel to toe across a room be so difficult? I could do it without thinking as a child, walking as if I was balanced on a tightrope. I could do a lot of things without thinking about them before.

Yesterday, I saw my neurologist for my six month appointment. She had a resident doctor take me through the normal tests they do to check dexterity, balance and strength. After everything, she asked me to walk heel to toe for as long as I could.

I had both been dreading this and looking forward to it. I’ve been practicing, seeing how many steps I can do before I lose my balance. It’s different doing it in a hospital, however. After all the exercises, my body is rather numb and springy all at once.

Taking a deep breath, I stepped out with my right foot and then managed to put my left foot in front of my right, so that the toe was touching the heel. I stepped again, willing my legs to do what I needed them to do. For the first time, no one held on to my hands. I was doing this completely on my own.

I took a third step, another deep breath, and a fourth step, my arms out to my side slightly. I wondered if I would be able to fly if I tried to. I took a fifth step, a smile across my face.

“Okay, that’s fine now.” She said.

I took a sixth step, just because I could. When I looked up instead of down at my feet, I had actually made it across the room. Now, granted, it was a small room but regardless, I had finally done it. I had walked across the room heal to toe. Even though I had walked across a floor, it was as if I had climbed a mountain.

This afternoon, I had the opportunity to go and see Kontinuum, a light and music and interactive art exhibit. I had been wanting to see it forever. Looking at my ticket, I saw that, in total, it would take 107 steps to get to where the exhibit actually took place, deep underneath the city.

I immediately thought about not going.

I sat there and thought of every conceivable reason why I shouldn’t go. Then I thought of walking those six steps, I could tackle one hundred and seven. I was fine until we approached them and looked around for the elevator, hoping to take in downstairs. There wasn’t one that I could see.

It was either go down the stairs or go home. I chose to go downward. I took my time, taking it one step at a time, the music playing around me, lights flashing above me. I counted each step that I took, making sure to keep track. One, two, three, four…

I was reminded of the movie Dancer in the Dark with Bjork and her song 107 Steps from the movie. I thought of what was waiting for her at the end of those steps and how terrified she was to put one foot in front of the other. I pushed aside my fear and continued downward, ever hopeful.

As I went further below ground, it was as if I was entering another world, so beautiful was the world around me. I walked down one stairwell that was made to resemble the throat of an enormous beast. I wondered what we would find when we finally arrived.

When we finally reached the bottom, I took a moment to look back at where I had come from. I had never climbed so many steps going down, not since I had gotten Multiple Sclerosis. My legs felt like jelly, but I decided to keep going. Kontinuum was all about transformations and the frequency that you put out into the world.

I had left my fear behind at the top of the stairs and found myself changed slightly at the bottom. I was no longer so afraid of putting one foot in front of the other and all it had taken was 113 steps.

 

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I Got This

I-got-this-greenThe other day, when I was talking to someone, I mentioned how meditation was really helping me deal with my Cerebral Palsy and Multiple Sclerosis. She looked at me, her mouth drawn into a frown of sympathy, and said “Oh, honey! Poor you!”

I went through a multitude of responses in my head, wanting to say something in response, when my spirit responded for me. “No no, it’s all good.”

“It is?” She said.

“Yes, I got this.”

I’ve been reflecting on this conversation for a couple days now. The truth is, a few years ago, I would have agreed with her. I would have said “Yes, poor unfortunate me.” I would have welcomed her pity and sympathetic glances. I would have given in to a pity part and bemoaned how my life had turned out so horribly.

I was that way for six months. I was mired in a forest of self-pity, the trees growing around me dark and filled with shadows. However, I missed the light that had been in my life, I missed joy. I decided to go on a journey to find them, to welcome them into my life again.

Along the way, while I leaned once more to do the things that I had taken for granted, I learned about what courage was. I learned about perseverance. I learned to look fear in the eyes and not be afraid of the life I was living now, to take my life in my hands and take back control.

It wasn’t an easy journey, but every step that I took towards my light was a step to reclaiming my life. I realized that there was no room in my mind for self-pity if I was going to get better. Self-pity and self-loathing would have landed me mired in the dark forest and I would never have ventured out of it again.

Instead, I looked at everything as a gift. Being able to do the things I had taken for granted was a gift: being able to iron my clothes, change the cat litter, dress myself, read a book, take a shower, ride the bus, write anything. All of those things which I had done without thought were now gifts to me because I could do them again.

Other things became gifts and instances of light. From the birds I saw, flying through the air on their own journey, to the sun shining on my face giving me warmth, to reading a great novel, writing a story of my own. Things that had been around me for my whole life, but had held no meaning, now gave to me their joy so that I could find my own.

After some time, the way I thought about the Multiple Sclerosis changed. Gradually, it became a light of its own, showing me what I truly had to be grateful for, what I had to cherish, what mattered most to me. It became a gift in its own way, showing me what to be thankful for. That, though every challenge and obstacle I had to overcome, there was joy. There was light, even in the darkest moments.

That’s not to say that my life has been without challenges. I am in pain of some sort every day. This morning as I write this, my leg muscles had become like stone, making it feel as if I’m walking on stilts. Other days, my back muscles may spasm or my shoulders. It’s not picky, my whole body is a buffet. I still have brain fog where my memory and my brain aren’t working to well, I still have difficulty speaking sometimes, I still deal with sometimes crushing fatigue.

But that’s okay, too. More than okay.

Even with the issues that Multiple Sclerosis and Cerebral Palsy bring, I am reminded every day I am alive, that I am still going, still fighting. More than anything, I am still grateful and I am still thankful for the life I have.

So, when I told the woman “It’s all good, I got this”, this is what I was trying to convey in a small handful of words.

Every time that the MS and CP have me down or I’m having a rough day, that’s what goes through my head. That’s what I say to myself each and every time I am having a bad day.

I got this and life is awesome.

Posted in Brain Fog, Fatique, Spasms | Tagged , , | Leave a comment

Doing ‘It’ with a Disability

Doing It While Disabled

This was first published on the Spoonie Authors Network. 

 

The first piece of writing advice that I was given was: Write what you know.

Throughout my twenty years as a writer, I’ve happily ignored that advice. I’ve written fantasy novels, horror stories, and countless short stories and poems. And throughout all of them, I wrote only what pleased me, what I felt called to write.

Quite some time ago, I turned to writing romance novels. They were tales of perfect men wanting and needing love and affection to heal in some way. I peopled my romance novels with beautiful men who had sculpted muscles and damaged psyches. They had no physical disabilities or issues. They were perfection.

I ignored the second piece of writing advice I was given: Put yourself into your work to make it resonate more.

While I love writing romances, there was not a single person within those stories that was like me. While I loved all the characters I created, none of them were reflective of who I was. After writing over fifty romances, I decided I wanted to do something else.

I began writing a novel that I simply called Boyfriends. It would be completely rooted in reality, but especially the one that I live within. It focused on a group of LGBTQ friends who were trying to find love in the modern world.  I was thrilled and terrified when I started it because it would be the first time I honoured that advice about writing what I know.

Throughout the novel that became Lust and Lemonade, I included people who were gay, lesbian, transgender, and straight. It felt wonderful to be writing about these characters living their lives and trying to find love.

However, I still wasn’t being true to one part of myself and the struggle that I have been through to find love and acceptance from another man.

I have multiple sclerosis and cerebral palsy. I live with a disease and a disability inside of me that affect my daily life. They also affect how men in the gay community perceive me. They would presume I was weak and somehow less of a man.

I had difficulty being intimate with men when my body was so unpredictable, when I wasn’t sure what it was going to do or whether all the parts would be working at the time when it came for the big bang. Every man I met treated me like I was some sort of fragile thing that would break. They would not treat me like I was a real man who had wants and needs, in and out of the bedroom.

When I met my husband Michael, he said that most people in our community saw having a disease or disability as a sign of weakness, when it is really a sign of a person’s strength. I was so shocked by this—that someone would recognize how strong I was to simply choose to live every day.

While it was a welcome change to meet someone like Michael, I still struggled with the intimacy that I wanted so much. He was patient and wonderful with me and when I told him that I was a sexual being, his response was, “Well, of course you are. We all are. Having a disability or disease doesn’t change that.”

It was wonderful to be totally and completely accepted by another man who didn’t see me as disabled or diseased. All he saw was me and he loved me for the strength that I showed every day. I came to the realisation that I wanted to reflect that in my writing in some way. I have a blog where I write about having cerebral palsy and multiple sclerosis. I thought that was enough.

After finishing Life and Lemonade, the second novel in The Lemonade Series, I began to think of who would fill the pages of the third novel, Love and Lemonade. Almost all the characters would return to be in the third novel, but I had the notion that I could finally deal with the one part of myself that was not reflected in my writing: being gay and disabled.

When I started the book, I introduced Zack in chapter three. Originally, he was in a wheelchair. The thing was, I knew nothing about being in a wheelchair. I could research it, as I did for writing transgender characters, but it would be beyond my experience. Then I wondered what disability I would write about when it hit me.

I would write about my own.

I had multiple sclerosis. I lived with the disease every day. By writing about a character with multiple sclerosis, I would be able to show the trials and tribulations of having a disability in the gay community and how it’s perceived. I would finally be able to follow those two pieces of writing advice I received so long ago: write what you know and put yourself into your work.

My hope is that, through writing about a character that has Multiple Sclerosis, I will not only help Zack find himself, but also it is my hope that I will find myself within the pages of my book and that it will resonate with others.

Zack has quite a journey ahead of him, but knowing him as well as I do, I know he will be strong enough for the challenge.

Posted in sex, intamcy, sexuality, Writing | 3 Comments

Re-leaning Who I Am

potter-1244837I’ve had to relearn who I am.

I had to learn to walk again, to speak again, to see and to hear. I had to learn to type again, to write again, I had to relearn how to do everything that I did without thinking about it before. Now, every action had to be a conscious thought before it was done.

Aside from all that, it occurred to me the other day that I had to relearn who I am. I’ve never really stopped to think about what it has taken me to get to this point in my life. Sure, I’ve written about it a lot, but I’ve never really taken it in. It was just something I had to do.

I will have had multiple sclerosis for four years this August. For a while, it was a constant fight to take on every day, to engage with reality instead of the stories I make up in my head and put to paper. Now, every day is a joy, a wonder to experience.

I lost who I was when the multiple sclerosis hit. It’s as if I’m two different people: the me Before MS and the me After MS. When I look at pictures of myself from four years ago, I wonder, could I have forestalled it? Could I have avoided it?

There is no avoiding the fates we are given. We just have to roll with it as best as we can.

I lost large sections of my memory from Before. I had to not only pick up the pieces of myself that still remained and gather them close, I had to fill in the dark spaces with new memories, new joys.

For a while, I didn’t know what joy was. There was only pain. Gradually, however, there was light that started to come into the darkness, a breeze flowing through me that carried the scent of flowers and the smell of hope.

What would I say to my younger self from four years ago? Probably this: It will be okay. It will be tough going, but you will be okay.

As I’ve relearned about who I am and what I’m capable of, I’ve learned what real joy is, what courage really feels like. I don’t know that I’m brave. I just live the life that I’m given to the best of my abilities.

In my mind, I see a man standing at a pottery wheel and he’s shaping a sculpture lovingly, bringing its smooth lines out of the clay. I see the pieces of clay he started with, all jumbled in a pile. I wonder what the artist forgot to put back in me when I was remade? I wonder what he left out?

In the end, I am but a work of art as we all are. A piece of pottery that has withstood not only a fragmented existence, but the ability to come through the fire looking more beautiful than before.

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Heavy Metal Days and the Strength Card

two-steps-at-a-time-coverI am in pain of some sort twenty-four hours a day, seven days a week. I never get a vacation or a day off, I never get to go on a holiday from the pain. It is my constant companion that lives beneath my skin.

For the past two days, I’ve been experiencing spasms that started in my right shoulder. Today, they moved laterally to encompass both shoulders and then they felt like taking a longer sojourn down my right side. My arms hurt, my legs hurt, my back hurts, my neck hurts, everything hurts. My shoulders are holding the brunt of the pain and its like a fire is running along my back.

But I don’t let any of that stop me. Yesterday, I went to work, went for two walks and did my workout and meditation. Today, I went for two walks during my work breaks and I will more than likely go for a swim and do my meditation. I have a life to live, after all.

I am a Tarot reader and one of the cards I draw a lot is the Strength card. I love its message of internal strength, of compassion for myself as well as others. I love what it symbolizes, that true strength comes from within. I had a friend tell me that I had to figure out what my fascination was with the Strength card, why I felt such a pull to it.

In the end, it’s because I am strong. How else could I get through every day? How else could I take everything day by day if I was not strong, if I did not carry a reserve of strength within me to do what needed to be done? People often tell me that I am very brave to live the way I do, to not let my disability and disease stand in the way of living.

I don’t know about bravery, but I will admit to being strong. It’s the only way I know how to be.

I have days where I can look past the pain, where it’s at a lower volume. It’s as if Max Shadow and Cedric Paulson (the MS and CP I live with) are playing music and every flash of pain is a note playing inside my body. Some days they are playing top 40 hits, songs with lots of beats and a good rhythm. Sometimes, they are playing torch songs, ballads filled with infinite sadness. Other days, they are playing rock and roll, heavy on the bass and percussion. Some days they are playing heavy metal (their music tastes are very eclectic). Those days are the worst.

They are the days when I am fighting fatigue, brain fog and a host of other symptoms because I am so focused on living past the pain.

Today is one of heavy metal days. But here I am, sitting down to write this. It is always my hope that, in writing about what I carry inside of me, I will make sense of it. I will make peace with the pain for it is the way it has always been.

I always remind myself that I have a choice: I can lay down and quit, or I can work past the pain and keep on rocking.

I always choose to keep on rocking, wouldn’t you?

Posted in Brain Fog, discomfort, Fatique, Spasms | Leave a comment

The Positivity of Time

Two steps at a Time coverI measure my life in terms of positivity.

That might seem odd to some, but it’s just how I roll. I’m in pain all the time, but you wouldn’t know it. Either my legs are spasming or my back is quaking or my shoulders are shaking, but I don’t let it bother me. What’s a little (or a lot) of pain when there is a life to be lived?

I was reminded of how far I’ve come this afternoon. In 2014, I moved to a new apartment. I remember going to get groceries and attempting to carry them back to my new home. The walk, BMS (Before Multiple Sclerosis) would have taken me ten minutes or so as the grocery store was just down the street from my place.

Instead, AMS (After Multiple Sclerosis) the whole trip took me about forty-five minutes. It was agony and I had to keep putting the bags down as my arms couldn’t handle the weight. My body was shot afterwards and all I could do was rest for the evening. My body, mind and spirit were done.

I was reminded of that trip today. We are moving offices at work, so I had to bring all my personal effects home. I had four large bags to take home and they were heavy. I wasn’t sure how I would do trying to take them home on the bus, but I would give it the old college try.

I managed to get them from the office to the bus stop. Thankfully, a lovely woman helped me get the bags on to the bus. I was worried about the walk to home after I got off the bus, though. That would be the real challenge. The distance from my bus stop to my home was about the same length as it was between the grocery store and my apartment three years ago.

Getting off the bus, I felt the weight of the bags but knew, somehow, that I could do this. I had three people offer to help me on the way; I guess they could see me struggling a little bit. I thanked each of them because I knew, without a doubt, that I could do this. I made it all the way home on my own. My arms are the tiniest bit shaky, but compared to three years ago where I was done for the rest of the day, today I sit here writing this.

For me, that is quite the accomplishment. It’s a cause for celebration because it’s proof of how far I’ve come. I remember how despondent I was three years ago carrying my groceries home. When I compare that to how I feel right now? No comparison.

So tonight, I am going to be thankful that I am on the right path to health and I’m going to celebrate. Life is meant to be lived.

And I’m going to keep on living.

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Falling Through the Air

Two steps at a Time coverMy left leg has been spasming for five days.

It’s always in the same place, the thigh. The spams aren’t painful, but strong. They last for a few seconds, the longest has been close to thirty. Normally, my spasms come on quick and then they’re gone, fleeting and forgotten.

It’s been five days now, which is new for me. I don’t know if it’s the Multiple Sclerosis or the Cerebral Palsy as they both share spasms as part of their symptoms but as the MS is more prominent on the left side, I’m going to assume it’s the MS.

The spasms are usually a warning sign that something is coming, that I have to be ready. This afternoon, while I was walking with a co-worker, that something came in a big way.

We were walking and talking about books we love when my left leg gave out on me. I tried to right it and it caught on the sidewalk and then I was falling. It felt as if I was swimming through the air, everything seemed to move so slowly, as if the air had become water. At the same time, though, it felt like everything was happening too fast.

I had both arms outstretched, knowing that the best thing I could do was to just fall and not fight it. I saw a bike rack in front of me full of bikes and I hoped that I wouldn’t fall into that, that I would be spared that kind of pain.

Thankfully, my body finally did fall. It’s like it folded in upon itself. I landed hard on my left knee and ended up on my back staring at the sky. I saw a cloud that looked like a face looking down at me. Then there was the sound of footsteps. A man held his hand out on my left side and my co-worker held out her hand on the right.

I put both my corresponding hands in theirs and they pulled me upright. The man had kindness in his eyes rather than derision. He was still holding my hand as if he was afraid to let me go in case I fell again.

“Are you okay?” He asked.

“Yes, I’m fine.” That’s my normal response, even when I’m in pain, but it surprised me that I actually meant it. I wasn’t trying to brush him off.

“Are you sure your okay?” He asked again.

“Yes I’m okay. Thank you very much, though. You’re very kind.”

He smiled and then slipped away into the crowd of people walking away. My co-worker stood close to me. “You’re sure you’re all right? I saw you falling but wasn’t fast enough to stop you. I would have reached out and grabbed your hand.”

“I’m fine.” It surprised me how much I meant it.

As we returned to work, I reflected on what had happened. Normally, I would have walked away from anyone that had shown concern. I would have felt compelled to offer an explanation about the CP and the MS, some reason about why I fell. I would have been embarrassed and would have beat myself up for the rest of the afternoon and evening over something I have no control over.

Instead, this afternoon marks a turning point for me.

I accepted that kindness and didn’t jump to the conclusion that people were looking down at me. I let myself fall because it’s what the body needed to do instead of fighting it. And when I said I was okay, I wasn’t lying. I was actually okay; I was all right. I got back up and kept walking and did it with a smile on my face.

Sure, I’ll hurt later. But tomorrow is another day.

Posted in Balance, Falling, Spasms, Symptoms, Walking | Leave a comment