Looking for the Oracle

fca677c96021985529825f993890458827c80e13Before I was diagnosed with relapse and remitting Multiple Sclerosis, I thought I could cure myself.

Someone had said that it was all about mind over matter. I could choose not to be sick. I could choose my destiny and my way forward and I could cast the illness aside. I clung to that thought, the idea that I could cure myself. There were several problems with this, but I would only figure that out as time moved on.

When the illness was fresh, before the official diagnosis, I was in a terrible mental state. I had ceased to know who I really was anymore. I didn’t know where I ended and where the Multiple Sclerosis began. I tried to find answers to questions that I wasn’t able to articulate.

It began to take other things from me. It took my ability to walk and my balance. It filled my body with fatigue and nausea. I let it take my friends from me, shutting myself away until my only company were the trees that had sprouted from the shadows that filled my apartment.

The illness continued to worsen. I woke one morning to find my whole body had gone numb on my left side and I wasn’t able to speak. I had lost hearing in my left ear and had gone partially blind. The dark forest that took up residence inside of my head began to take up all the room it could, stretching itself so that its leaves filled my entire body. I was literally lost inside of myself.

Then I lost the ability to speak and to type. Without my words, without being able to use my gift, I was in complete disarray. The pieces of myself began to break apart and I could barely hold on to them all. I had to let some of them float away from me because they refused to remain still. My mother took me to the hospital right away.

At the hospital, I was lucky that there was a neurologist on staff. He took a look at me, at my lopsided face and listened to my slurred speech. He told me that it might be Multiple Sclerosis but they would have to run some tests. While they ran those tests, the forest grew by leaps and bounds. I could no longer see out of my windows.

Then the diagnosis came. After nearly a year of not knowing what was wrong with me, it finally had a name: Relapse and Remitting Multiple Sclerosis.

I was re-reading the Harry Potter series of books again at the time. I turn to that series when I’m sad or when I want joy or just want something good to read. There is a line that Dumbledore says near the end of Harry Potter and the Philosopher’s Stone. He says: “Fear of a name only increases fear of the thing itself.”

I thought: Now I know my illnesses name. Since I know the name, I can fight it. I don’t have to be afraid anymore. I was though. I was terrified. Multiple Sclerosis seemed too big a name, too large to keep inside of me. Being a writer, I thought it was only fitting that I give it a name as I would one of the characters I created, as I had the Cerebral Palsy that I was born with.

I had called the Cerebral Palsy Cybil Paulsen. Cybil was a reference to the book and movie from 1976 called Sybil where a woman called Sybil has a mental breakdown. So, I called the Multiple Sclerosis Max Shadow. It only seemed appropriate that he had the name of a spy, someone who could slide into my body and take things from me without me knowing. Someone who could hide within the shadows that my body carried.

I had thought that my illness having a name would be a shield against it, that the name of the nothing that I carried with me would give me power over it. I was wrong. In May of 2013, things reached the darkest point in my life so far. I didn’t know what to do, what I had done to deserve the diagnosis. Wasn’t having Cerebral Palsy enough? What kind of karmic retribution was this?

Unable to tolerate it anymore, I contemplated taking my life. I was sitting outside, a bottle of pills spilled into my hand and I was ready to live inside the forest and inside of myself. I have always lived with depression and it had never been this bad. I couldn’t hear anything above the whisper of the leaves from the dark forest that lived within me.

Thankfully, I had the sense to call my mother. She was the voice of reason that day and the light that shone through the dark canopy of leaves. She was the one who pulled me back so that I was outside of myself looking in at the foliage. I knew then that something had to change, that I had to take a different approach to what was going on within me. I had to choose a different path.

I turned towards my faith to find answers to the unknown. I’m Pagan and have always been drawn towards spiritual practices. I tried everything thing I could, if only so that I could ignore the whisper of leaves that wanted to pull me back within the shadows.

I took lessons on how to read tarot cards, I attended second level Reiki training, and I took workshops on essential oils and candle making. I read books on the tarot, on different spiritualties and filled my mind with as much knowledge as I could.  I was so desperate to find anything to give me the answers to my unasked question. If I had taken a moment to utter that question out loud, it would have been “What is the cure for my Multiple Sclerosis? How can I find a cure?”

In between going to workshops and classes, I was learning to do things for myself again. I had to learn to walk again with a cane and I trained myself to type again. I worked on my speech and this was easier once the numbness eventually faded away.

However, what I most wanted to do again was write. Before my MS, I was able to type out thousands of words in a weekend. Now I could manage only five words. I strung those together to make poems. Those poems helped me to fall in love with the craft of writing. I had to really think of what I wanted to say and how to say it.

I learned to do simple tasks again like cooking for myself, cleaning my apartment, changing the cat litter, taking out the garbage and taking a shower and considered it minor miracles when I was able to do so without falling. It was a relief to be able to do things for myself again. I remember the first time I rode the bus again without having to use my cane.  That was a joyous day and I felt I had conquered the flat mountain.

All the while, I was delving further and further into my spirit, knowing that the cure to my Multiple Sclerosis was close, I just had to read one more book, take one more workshop, learn one more spiritual craft. It was then that I stumbled upon manifestation. This workshop focused on manifesting the life that you wanted through a series of different techniques like mantras and tapping and rewiring your brain to think differently by welcoming in the good.

Let me tell you, I tapped myself until I was raw. I was so focused on trying to cure the MS that I couldn’t focus on what I had accomplished. Once again, it was my mother that opened my eyes. She told me that she was very proud of what I had done in such a short time. I asked her what the hell she was talking about. My mother told me that I had conquered my MS by learning to walk again, to take care of myself again and to soldier on despite an illness that would have kept many people down. She told me that my positive spirit was what had kept me going. When I asked her what she meant by that, she pointed out all the work that I was doing on myself, learning tarot and Reiki and manifestation. I had even met a man and had begun dating again, despite my fear of rejection.

I thought about what she had said for a long time. After a few hours of deep reflection, the leaves whispering lazily at me, it occurred to me that I had been doing all of these workshops in order to find a cure for the MS but what I had really found was a cure for myself. From then on, things changed for me. I began to view my life with MS and CP as a gift. That mindset continues to this day.  Also, that man I was dating became my husband.

When Renaissance Press put out the call for stories for Nothing Without Us, I knew that 590d5ec17e850dcbe3af4f6bf9648740_originalI wanted to write a story for it. They wanted stories with disabled protagonists or protagonists living with chronic illnesses. I fit both. It could be in any genre and so I chose fantasy. They wanted stories told in our own voices that made the person with the illness or disability the protagonist and not the sidekick.

The original idea was to write a story about a mighty knight who climbed to the top of a mountain and conquered a best that lay within. The parallel I was going for was the fact that for me even a sidewalk can sometimes feel like a mountain. I knew that I wanted the story to be magical in some way and really wanted it to sparkle.

What came out instead was The Descent. I wrote the story in two sittings. It’s about a wizard named Jefferson who goes on a voyage to find an oracle. He wants the oracle to help with one specific thing: cure his MS. He’s tried magic of every kind and, when that didn’t work, he tried killing himself and was saved by the love of another, in this case a man named Mikhail.

As Jefferson makes his way down a long flight of stairs, he travels with his MS named Max Shadow. They have a conversation as Jefferson makes his decent into darkness to find the oracle and by the end of the story, the two of them learn something about themselves and how they need to work together. Jefferson realizes that he is his own oracle, his own salvation and it’s up to him to accept Max Shadow instead of spending all of his magic fighting against himself. That the cure he was searching for was choosing to live.

I was astounded by the story. Essentially, it was myself on the page clear as day but given the smokescreen of fiction. It wasn’t the story I had wanted to write, but it’s the story that wanted to come out. I tried to write another story, but the words didn’t want to come. I read through the story and I didn’t like it at first. I didn’t think it was magical enough. However, I decided to submit it anyways, thinking that at the very least I could post it on my blog if the story wasn’t chosen. I figured it wouldn’t be because the story felt too raw to me, too personal.

Thankfully, I was wrong. The story was accepted and has garnered some really wonderful reviews. People have thanked me for writing a story that deals with a trope that happens a lot in fiction where the protagonist is able to magically cure what is wrong with them or a cure is provided.

I think that is the most important thing in the end. I went on my journey and realized that I could cure myself, but not in the way that I first thought possible. I changed the way that I thought about my Multiple Sclerosis so that I no longer viewed it as a death sentence. By choosing to live my best life, even because of the Multiple Sclerosis, I had found the cure.

I choose my destiny and it is full of sparkles.

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The Descent and Smashing Tropes

fca677c96021985529825f993890458827c80e13.jpgHow cool is this?

My story, The Descent, which appears in Nothing Without Us, has been referenced in a scholarly blog about disability tropes written by Derek Newman-Stille.

Nothing Without Us was special to me and I’m thrilled to have my story included in the anthology. It’s an anthology with stories by disabled writers that features disabled people as the main characters, not the sidekicks.

The Descent is about Jefferson and his quest to rid his body of the multiple sclerosis that plagues it. Originally, I had wanted to write a very magical story where a wizard goes off on a quest to climb a mountain.

The Descent is what came out instead.

At first, I wasn’t going to send it in as it wasn’t the story I wanted to write. Eventually I came to the conclusion that it was the story I was meant to write. I wrote it using my own voice to make the story all the more powerful. Am I ever glad I sent it in .

Derek says this about The Descent:

The Descent” deals with the internalized ableism we feel as disabled people, often assuming that the only way that we can interact with the world is through being “cured”, i.e. made able-bodied. Wolf’s use of the disability as a personified character who is interacting with the disabled person he comes from allows for an exploration of that dissociation from disability that our internalized ableism can create, but it also allows for the disability itself to be personified and humanized.

You can read the entire article here:

https://disabledembodiment.wordpress.com/2019/10/22/disability-tropes-101-the-magical-cure/?fbclid=IwAR1Ahr4Sytjkt0xLidDngIYz68qrJq-aE-Vxd_eE7eLXD3NA7lADSDIFFvQ 

I’m so thrilled to have my story referenced. It’s my hope that the story will touch the lives of many people and hopefully help them see themselves in a different light.

You can get your own copy of Nothing Without Us in Paperback, eBook or Audiobook.

 

 

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The Story Within My Self – Love and Lemonade out now!

Frong CoverHere’s the thing: Although I’m open about having multiple sclerosis, I was hesitant to create a character in one of my novels that had MS.

I was approached by a friend at one point. He asked me if I was going to write about a character that had multiple sclerosis. I told him that no, I wasn’t going to. I already blogged about it, that was enough, or so I thought at the time.

I’ve written over thirty romance novels and there wasn’t one disabled person in the massive cast of characters. They were fantasy, I told myself. There was no reason to put real life in fantasy, there was no place for it, no need. I’ve also written a multitude of short stories and other novels and no one was disabled in any of them either.

Shortly after I was diagnosed with MS, I began to write poetry. I wrote about the disease within those words because it felt safe. It wasn’t a novel; it wasn’t something someone turned to for escapism. It enabled me to write about what I had within me; it gave me a way to escape. I had the poetry I wrote and the blog. That would have to be enough.

Except that it wasn’t. I turn to books for comfort like a lot of people do. None of the books I was reading had any disabled characters or people living with chronic illness. I began to wonder if I could tackle that, if I could create a character that had MS.

I came to the realization that I was afraid to do that. I had held off writing about a character with MS because I was afraid. Of what? I wondered if it would change the way that I wrote. I knew that I would have to pull from my own experiences, my own life. I wrote about my path with MS in my memoir, Little Yellow Magnet, but I knew that if I was going to write a character with MS that it had to be true.

Most authors put a little of themselves into each character and I’ve always done this. However, writing this character would be all of me within a fictional world, blurring the lines between the different genres and types of writing that I do. I decided to go for it.

I was working on the third book in my Lemonade Series. It dealt with life, real life, and was grounded in reality, so I thought it would be a perfect stage to put my character in. The novel deals with all kinds of love and relationships and I wanted to really show what it would be like to date in the gay community if you live with a disability or chronic illness.

I had one moment where I was going to write about someone in a wheelchair but in the end, I decided to write what I knew. I knew nothing about being in a wheelchair. I created Zack. He had the red hair and green eyes that I always wanted when I was young. Hey, it’s a novel, so there has to be some fantasy, right? However, he would be living with MS.

It was freeing writing Zack’s character. To me, he represented everything that a person living with a chronic illness or disability is: courageous. In Zack, I put my zest for life, my fierce drive to succeed and my desire to find love. Thankfully, I’ve found love with my husband, but I well remember what it was like when I was in the dating world. I tried to capture that in Zack and his story.

While I love all three novels in the Lemonade Series, Love and Lemonade holds a special place in my heart. It’s the novel where I was the most truthful with a character, where I was finally represented in a story, where all of me was present and accounted for.

Check out the trailer created by my publisher Renaissance Press!

I do hope you find out what happens with Zack and company. You can find Love and Lemonade at the following places:

Renaissance Press Paperback: https://renaissance-107765.square.site/product/love-and-lemonade-by-jamieson-wolf/123?cp=true&sbp=false

Renaissance Press eBook: https://renaissance-107765.square.site/product/ebook-love-and-lemonade-by-jamieson-wolf/128?cp=true&sa=false&sbp=false&q=false

Amazon.ca Paperback and eBook: https://www.amazon.ca/Love-Lemonade-Jamieson-Wolf-ebook/dp/B07W8H7KLG/ref=sr_1_1?crid=1VLLAJHD05CBF&keywords=love+and+lemonade+jamieson+wolf&qid=1570136645&sprefix=Love+and+Lemonade%2Caps%2C157&sr=8-1

Barnes and Noble: https://www.barnesandnoble.com/w/love-and-lemonade-jamieson-wolf/1133930557?ean=9781987963649

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The Stone Man Speaks

Ecoute-Sleepy-Head-sculpture-Saint-Eustache-ChurchMultiple Sclerosis is a curious disease, just as Cerebral Palsy is a mysterious disability. Even after so many years of living with them, they always like to keep me guessing…mostly because I’m no longer sure which one does what.

It used to be, before I was struck with MS, that I knew when I was in pain or having difficulty walking, that it was my Cerebral Palsy. Now I’m not so sure, though there are symptoms of the disease that are easily identifiable.

Last week, I went out for a walk. I stepped onto a curb and, just like that, my left leg gave out right from under me. I remembered to just let my body fall, to just fall into the motion of it, rather than try and stop myself from falling; I’ve done great harm to my back that way. I had to learn how to fall again instead of trying to keep myself upright, which is the natural tendency.

Even though it happened very quickly, it was like I was falling in slow motion. As I fell, I aimed for something softer than the pavement. I ended up aiming for a garden that was in front of someone’s house. I landed hard with my left arm out and it took all of my weight. I lay there for a moment, making sure that I was all right. Nothing seemed to be hurt aside from my pride.

Then I tried to get up.  I had wrenched my shoulder and hurt my arm. My back was on fire and my legs had reacted as they always do and become stone pillars. Everything had spasmed and I was made of stone. I hobbled more than walked home.

As I said, before the MS I would have put that fall down to my CP. However, my CP was always more polite. It would warn me with intense spasms or tremours that moved through my body before something happened. It always sounded off an alarm before something would happen. Now, I’m walking one moment and down the next. I have to assume it’s the MS. Whereas CP is more polite, my MS can be ruthless.

I’ve often referred to my Cerebral Palsy as Cybil Paulsen and my Multiple Sclerosis as Max Shadow. I’ve often wondered if they are having a conversation within me. I picture it going something like this:

“Oh, I say old chap, how are you?” I assume that Cybil would talk in a British accent.

I’m awesome! Look what I’m going to make him do!” This is Max Shadow who for some reason sounds like Jack Nicholson in my head.

“I say old chap, that is not the least bit polite. You have to warn him!” Cybil is always so considerate.

“I do what I want, old man. That’s how I role.” Max Shadow can be a bit of a badass.

Something else happened. Last night I had serious trouble speaking.

I was trying to tell my husband what day Ami McKay was on for the Writers Festival. We were going through our schedules and I wanted to make sure that he had her talk in his calendar. She’s on tour for her new memoir, Daughter of Family G, and I was thrilled to get tickets. I tried to say the words Ami McKay and couldn’t. I tried several times and finally said that “The author I love is on the 27th of October.” My mouth was like stone, much as my legs are, unable to shape the words I wanted.

I’ve had difficulty speaking before too, but it’s been with increasing regularity that my tongue and lips don’t want to match up with the words my mouth wants to utter. I know that this is the MS and all I have to do is wait it out. With Relapse and Remitting, my symptoms change on a dime, doing one thing one day and another tomorrow.

I’ve come to realize that life is an adventure. Like every great adventure, things are different every day. It’s also easier to travel with friends, so thankfully I have Cybil and Max along for the ride.

It took me a long time to accept the presence that both of them have in my life. I just have to make sure that my presence, the element of me, outshines both of them.

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The Whispering of the Trees

Shadow ForstI entered this in the CBC Non Fiction Prize. While I didn’t place in the long list, that’s all good as I can now share it with all of you.

 

The world had fallen around me.

The dark forest had sprung up around almost without noticing. Everywhere I looked, I saw the shadows of the trees along the walls. I could see the shadows of crows as they flew from tree to tree.

It had been like this since the diagnosis. I had thought I was okay. I was not. I had gone so far into myself that I don’t know where I ended or where the multiple sclerosis began. I had no idea who I was anymore. My body was completely unknown to me and every action felt foreign, as if someone else was operating my body. I didn’t know how far the forest went within me. I checked my pockets for bread crumbs and hoped the birds were on a gluten free diet.

I wanted to distract myself from the whisper of the trees. It was becoming too alluring to walk amongst its branches and trees that never bore fruit. I was starting to look forward to the shadows of the leaves. They felt like a caress of a lover, someone that understood what I was when I could not.

Max Shadow sat watching me, a bemused expression on his face. “What do you think you’re trying to do?” He said, his voice dripping in derision. He was the embodiment of the MS within me. As a writer, I had mistakenly thought that if something had a name, I could fight it, that I had power over it. I could beat it. I had pulled him out of my imagination, but he was more powerful than me. He was the worst thing to come out of the forest. “You don’t think you can just walk away, do you?” He let out a little laugh. “We almost had you, Jamieson. Almost. If only you had taken the pills.” He sighed. “Just think, all it would have taken is that handful of pills and you would have experienced sweet oblivion.”

Though he sat in shadows, the dark forest whispering around him, I could see his teeth flashing in the dark. “Don’t worry.” He said. “There’s still time. We’ll have you yet. We both know that broken men belong in the forest.”

The truth of it was that I almost believed him.

I wanted to do something, anything to distract myself and to quiet his voice. I tried cleaning my apartment. This should have been easy. Before the MS, I loved to clean. I would think through plotlines of the novel I was working on while I cleaned while listening to loud music. Now everything was a battle. I couldn’t walk without a cane and when I wasn’t using it, I had to balance myself with my hands against the walls or risk falling over. This was my life. Everything was a battle and now I was fighting a war against myself. I didn’t care, I needed the distraction, needed to find a way outside of myself.

The wind from the dark forest increased, wrapping me in a soft breeze. I could hear the chatter of the crows and the almost rhythmic beat of the forest that matched the beating of my heart. I began cleaning, haphazardly, just to shut everything up, to keep the crows from shrieking at me, to stop Max Shadow’s soft laughter. I picked things up and moved them, I tried to wipe surfaces, but even that was difficult what with having to keep my balance. I wasn’t cleaning very well, and I could feel myself about to break.

“You really are rubbish at everything you do, aren’t you Jamieson?” Max said.

Trying to ignore him, I turned away from him and tried to clean the fridge. I could see fingerprints on the fridge door and there was a thin layer of dust over the whole thing. I grabbed a rag and wet it, turning back to the fridge.

“That’s it, Jamieson. Clean off the dust, but that’s all your body is full of, isn’t it? No wonder no one wants you. Who would want a broken man?”

I made a rough swipe with the cloth, a guttural sound coming out of my mouth, and I knocked a bunch of magnets off the fridge door. I looked at them, lying on the floor so colourful but somehow so far away. I had to pick them up one at a time, afraid of losing my balance and falling over.

One magnet drew my eyes, however. It was a little yellow magnet that my mother had given to me quite a few years ago; I hadn’t looked at it in some time but out of all of the magnets, this one drew my gaze.

I bent down slowly to pick it up, making sure that I was propped against the fridge and holding on to the door. I picked it up and held it in the palm of my hand. I looked at it, so sunny and yellow and bright. There were six words written in black. They said: My life is up to me.

I held that magnet and thought about what my life had become: I had almost taken my own life. My love life was non-existent because I was too afraid of rejection, too afraid of what people would see when they looked at me. I was so afraid that I let a man who loved me hurt me as it seemed better than being alone with the wasteland that was my body.

More than that, I had to love myself, even just a tiny bit, before I could love someone else. Or at the very least, I had to make peace with what I had become.

I was in danger of losing my job. I was terribly depressed and still in the depths of the forest. I could hear the trees whispering to me during the day. Even when I couldn’t see them, they were there, and I could feel the tree branches scratching me on the inside of my skin.

“The trees have tasted your fears, Jamieson.” Max said. “You’ve always carried them within you, but you’ve finally let them free. They want to welcome you. Just one bottle of pills, Jamieson. That’s all it would take.”

I had cut out all of my friends, people that had been my family. That was my choice as I believed that no one should have to put up with me, let alone myself. I had no social life. Instead, I went to work, barely made it through the day and then I would come home and hide inside my apartment. My world was the walls of the place that I called home and it was here that I could hear the leaves of the trees the strongest.

“And isn’t that how it should be?” Max taunted. “Who would even want to bother with a broken man like you? You’re so weak.”

In a way, I had died, even though I was still living and breathing. I had let the disease take everything from me, had given it every part of myself to try and appease it, though it did no good. I pretended I was okay, but the truth was, I was a ghost of my true self.

“You were always a ghost, Jamieson, though you didn’t know it. Who would notice someone so insignificant and broken?” I believed him. Dear God, I believed him.

Looking down at the floor, I saw not magnets but pieces of glass that had been my chalice, the vessel that I carried within myself that held me together, that held everything that I was, my spirit and my joy. It lay in pieces on the floor, glittering at me in the dim light.

I looked down at the little yellow magnet again. The words stared back at me: My life is up to me. I worked at shaping my mouth to form the words: “My life is up to me.” I whispered. I tried again, a little louder: “My life is up to me!

Max laughed. “You think so? Your life has already been decided for you. You don’t have one. If the Multiple Sclerosis has taken everything else, if you’ve given all that you have to me, why not give me this one final thing? There’s a bottle of pills in your bag, Jamieson. It would be so simple.” He smiled. “They would taste like candy.”

In that moment, despite the allure that Max had laced his words with, I made a decision that would change the direction of my life. I was not broken. I deserved more than this, more than the forest would offer me. If I didn’t like something, I had to change it. The only thing was I had no idea where to begin, where to start looking for help or how to put the chalice back together again.

It didn’t matter. I had made the decision. I would change the road I was on and choose to walk along another.

Max looked at me with a face filled with horror, knowing that something had shifted inside of me. “What are you doing?” He hissed at me.

“What I should have done a long time ago.” I whispered.

I imagined the branches of the dark forest reaching out to grab hold of him, of that piece of myself. The branches pulled him back into the shadows with a loud cry that shook the walls and reverberated inside of me. All that was left was the whispering of the trees. The forest would remain for a while, it would take time for it to disappear and maybe the dark forest would never go away completely. Max Shadow would be back, too. He was part of me as were the trees of the dark forest. It didn’t matter. Contrary to what Max had thought, I was not broken. I was worth more than this and I had a choice to make.

I would choose to live.

Posted in Memoir, Muscles, self esteem, sex, intamcy, Symptoms | Tagged , | Leave a comment

Listening to the Body is the Hardest Thing to Do

listenAs much as I’m thankful for the multiple sclerosis and what it’s taught me, there are times that it makes me angry and pisses me off.

There is so much that I try to do and, most days, I succeed. There are other days however, where I don’t succeed at all, where my body stops me from doing what I’d like to do; or rather, when I have to listen to my body and give in to it’s demands. I suppose that’s what pisses me off the most.

I haven’t always listened to my body. The creaks of fatigue or the spasms or the brain fog would be singing and talking to me, but I would choose not to it and I would pay dearly. There was one time at Christmas a few years ago that comes to mind. It was when the MS was fresh within me and I still wanted to do everything I had done before, when I couldn’t admit to myself that things were different now.

The week leading up to Christmas as busy. I remember two potlucks on one day, a work event, friends to see and gifts to buy. I wore the fatigue that year like an extra layer of skin. By the time Christmas came around, I had a cold. I spent most of New Years indoors and in bed. I think I got a bottle of wine for myself but spent the majority of New Years in bed.

Had I listened to what my body was telling me, the signs that it was giving me, I would have been okay. This didn’t mean cutting everything out, but not trying to do everything, giving my body the time it needed to repair itself. It was hard for me to learn was that just because I can’t do everything I want all the time like I used to doesn’t mean that I’m not superman.

Just because I’ve learned to listen to my body doesn’t mean I have to like it. Take today for instance. It’s Pride Day in Ottawa. I really wanted to go to the parade today, to celebrate who I am with everyone else. However, last night was a rough one. My bladder was overactive, even with the medication I take to lessen the amount that I need to get up and urinate during the night. That brought on insomnia and spasms that ran from my legs and all the way up to my back. For the last hour or two before the alarm went off, I just lay there in bed looking up at the ceiling.

This morning, I struggled with my decision. My brain went around and around, something like this: do I go to the parade or not, go or not, go or not, I could go, I’d bring my cane, but I really should listen to my body, but I wanted to go, I wanted to sparkle, I’m so tired, I really should rest, but I have tomorrow off, I can rest then, but then I’ll be in more pain and even more tired than I am now…

You get the picture.

In the end, I listened to my body and made the right choice. I chose me rather than the parade; I chose to listen to my body instead of what my heart wanted. I was angry, angry at having to make the decision in the first place instead of doing what I wanted, all because my heart and head are in a body that carries within it limitations that shift and change like the wind.

I’m sitting here angry with myself and with my body even though I know that I made the right choice for me, my husband and my body. That’s throwing me into a tailspin of depression and then I get angry with myself because I know that I did the right thing.

So, in order to let go of some of the anger and avoid a downward spiral, I am sitting here writing this. I guess that I can take comfort from knowing that I did the right thing, that I made the right choice. It wasn’t an easy choice to make but it should have been. In the end, I can also take comfort from the fact that I sparkle wherever I am and whatever I’m doing.

I know that my body will thank me tomorrow and that I will be able to enjoy tomorrow because I made the right decision today. I will continue to sparkle today and every day. I sparkle wherever I am.

Posted in Brain Fog, fatigue, Insomnia, Spasms, Symptoms | Tagged , , , | Leave a comment

What Max Shadow Taught Me

this oneSix years ago, on August 21st, my life changed forever.

Since January of 2013, I had been living in fear of what was inside of me. I had been living in fear of myself. After months of testing and study, I was finally diagnosed with relapse and remitting multiple sclerosis.

The doctors apologized for the news, coming as it did the day before my birthday. I didn’t think it was a terrible thing. It was a gift of sorts. I finally had a name for what was wrong with me. Now that I had a name, I could fight it so much easier than when it was a ghost like foe.

I had to learn to walk and speak again when I didn’t know what I carried within me. Now that I knew that it was, I had the tools to fight him. I knew that I would be battling myself, that it was a battle I would never truly win but fight I would and fight I will.

In order to make the MS easier to fight against, I gave it a name. I called him Max Shadow. I wanted to give him a name that would match the initials of MS, but I had no idea how apt that the name would become. He was indeed like my shadow and I had to learn how to walk with him. I had to learn how to have him walk with me instead of behind me or in front of me. I would not live my life defined by my disability or disease, but I could not ignore it, either.

Along the way, Max showed me what to be thankful for. I began to see gifts in even the simplest of things: birdsong, sunrise and sunset, the joy of a good book, delicious food or the love I share with my friends and family. I didn’t have to be thankful for any big gesture; I could just live a thankful life.

Max also taught me about positivity. If I was going to be thankful about the small joys, I also wanted to embrace positive thought. I knew that I couldn’t wish away the darkness that lived within me, but I could learn to embrace it and properly go through a grieving process of my life as it had been and celebrate my life as it was.

I had learned to sparkle in the dark, so I used that sparkle to my advantage. My stance and my outlook became one of optimism, positivity, gratefulness and thankfulness. I realize that this doesn’t work for everyone, but it worked for me. My sparkles ended up being my armour against the battle I had to fight.

While not every day is a good day, I try to find the good in every day, even if it’s just a small moment, a little token of awesomeness amidst a grey cloud. I try to be thankful for every day because I’ve realized that though I am in constant pain, though my symptoms come and go with no rhyme or reason, affecting my movement, speech, vision or comprehension, every day is a gift, no matter what my pain level is at.

Every second, minute, hour and day is a gift. I thought I had died in a way when the MS made its presence known in my body. In a way, I had, but it was more of a shedding away of one life and the welcoming in of a new one.

Max Shadow taught me, though not always in a straightforward manner, to be a better person and a better version of me.

So, thank you Max for all you’ve done and all that we can do together.

Posted in joy, Milestones, Small Victories, Thankful | Tagged , , | Leave a comment