I am my own worst enemy.
I tend to spiral downwards when issues get to me, and I lose myself in the shadowy labyrinth. I know its walls very well and have wandered them for so long, they are a second home to me now. Looking back, I see spoons littering the dirt floor of the labyrinth, glittering like wishes that lay forgotten.
All kinds of things get me down: the depression I live with on a daily basis, the unkindness of others, the way people judge and tell me how I should act; the way I think I look when I gaze into a mirror; all the horrible things that are happening out there in the world that I have no control over—bombings, fires, human suffering of any kind. All of these battles are going on within me at any given time.
There is also my body, which I constantly struggle with, the words that sometimes won’t come out of my mouth properly, my legs that feel as if I am walking on needles and pins, the muscles within the skin that pulse and throb, the feet that drag or trip or stumble. There’s no rhyme or reason to what it does. I’ve tried to figure out how it works, how cerebral palsy (CP) and multiple sclerosis (MS) work with together, but they often work against each other, and I’m caught in the middle of their ongoing battle beneath my skin.
I write a lot to get out some of my frustrations. I read to escape the voices in my head that tell me I’m not good enough, I’m not beautiful enough, I’m a freak—part human, part elephant man. I read, I write, I paint. And that is still not enough.
A few years ago, I was faced with a choice. I had walked so far into the shadowy world of the labyrinth, I could not find my way back out. I nearly lost myself and let the darkness claim me. One day stood there in the dark and my eyes came upon a magnet my mother had given me. It was a little yellow magnet with six words written upon it in black font: My life is up to me.
Was this the life I wanted? Did I want to give my spoons away to other people? Did I want to take them away from myself? The answer to that was only one word: No.
Stress and negativity are the two of the worst things to a person with MS or anyone with an autoimmune deficiency disease. Stress takes on a different life within my body, bringing all of my symptoms (vertigo, balance problems, vision issues, numbness and tingling, spasms, trouble walking) to the surface. If the stress is bad enough, I no longer know where I end and the symptoms begin.
I knew that something had to change and that change had to start within me. It wasn’t an easy choice, to be positive. To choose to think positively despite all that I saw was wrong with the world around me and the world within me, too. Still, I thought it was better than the alternative—letting the MS win. I couldn’t have that. I wouldn’t have that, as I would not let my own body win the battle against me.
I started small. I thought one happy thought, just one, upon waking. Then with every obstacle I overcame, I would congratulate myself instead of berating myself for having to overcome the obstacle in the first place. I sat down in front of my computer and, even though the amount of words I was able to write had decreased significantly, instead of bemoaning what used to be, I celebrated what was and the fact that I was able to write at all.
I began to spend as much time outside as possible, whether it was on a patio or at a park, and while I always had a book with me, I looked up and around as much as possible. I took joy from feeling the sun on my face, from the wind on my skin. I took joy from the smallest things: the smell of flowers or the crunch of leaves underneath my feet.
It wasn’t easy. None of it was easy when my mind wanted to rebel against such thoughts and what it saw as distractions from its rightful domain. I was fighting my body and my mind at the same time, waging war against both of them, determined that I would come out the victor.
I thought about what kind of magic could defeat the darkness in the shadow labyrinth. What would be bright enough to tackle the unknown and succeed? I was sitting on a park bench, and my eyes were closed. The wind was rushing by me and the air smelled warm. I had put down my book and closed my eyes. I saw only light within me. It was small, just a kernel of light that I so desperately wanted to grow brighter. I began to think of what animal was bright enough, strong enough to be a beacon of light? The answer came to me right away, and I was surprised that it had taken me so long.
Didn’t they shine bright by just being? Weren’t they made of magic itself, pure and beautiful despite the world around them? No one believed in unicorns, but that didn’t mean that they didn’t exist. I would exist. I would live. I would be that unicorn.
Since that day five years ago, I have embraced positivity in all its many forms, so much so that I have been accused of being unfailingly positive. It was a very long road, but it started with honouring who I am and the journey I’m on.
I love the sound of laughter, the thrill that kindness brings me. I love the sight of someone else’s smile and the knowledge that I put it here. I am kind and positive to a fault. These make up my armour, my buffer against the world and against myself and that long winding labyrinth that still whispers my name.
Some people think I’m silly when I declare myself a glitter princess or wear my Harry Potter wizard robe at every opportunity. I dance and sing (badly on both counts) whenever I can. Every day, I wonder how I can live to the fullest, how I can make every day magical. I often think of myself as a unicorn and that my Special Unicorn Power to fart sparkles wherever I go. This makes me smile on the inside and hopefully, it’s reflected on the outside.
Now, I appreciate every moment, every second, every hour, every day. All the moments that make up our lives. Combating the stress and negativity that steals my spoons is a continuous battle, but one I will continue to fight and win.
Life is too short. All we have to do is sparkle on and live as brightly as we can.
Jamieson Wolf is an award-winning, number one bestselling author of over sixty books and writer of Two Steps at a Time, a blog about having multiple sclerosis and cerebral palsy. He is an accomplished artist who works in mixed media, charcoal, pastels, and oil paints. He is also something of an amateur photographer, a poet, a perfume designer, and a graphic designer.
Jamieson currently lives in Ottawa, Ontario with his husband Michael and his cat Tula, who is fearless. You can read more about Jamieson on his website or his blog, and can connect with him on Facebook and Twitter.
Call for submissions opportunity!
Editors Cait “Pinky” Gordon and Talia “The Brain” Johnson are seeking short stories of 1000-3500 words for their anthology, Nothing Without Us. The submission window is from September 30-Dec 31, 2018. See the submission guidelines for more information!
Thank you for this gorgeous piece of writing that covers inspiration and magic too! Before you mentioned Harry Potter, I was already seeing my “patronus”; a glowing white Arabian mare. She doesn’t fart sparkles but she makes me feel empowered to chase away the feeling that darkness is upon me.
There really is magic and beauty in every moment. We can all be grateful in that one moment, if we make that choice. I’m glad you did. 🙂
Thank you so much Marianne! I love Harry Potter so much. I’ve read the books more times than I can count and actually have a Wolf Patronus tattoo on my left leg. 🙂 The world is filled with so much joy. It would be a shame to be in the dark and miss it. 🙂