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.

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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.

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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.

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We Are Warriors

8E7467A8-A6A3-40A8-901E-8F9CFBD390E9This afternoon, I was having a conversation when the subject of my memoir came up. She asked me what it was about.

“It’s about my journey with multiple sclerosis.”

“Oh!” This pained look came across her face. “I’m sorry.” She said. “I didn’t know you had MS. You don’t look disabled.”

“It’s all good. I was born with Cerebral Palsy, so the multiple sclerosis is just along for the ride.”

The pained look on her face deepened. “I’m so sorry.” She said.

“It’s really okay.” I told her. “The MS made me realize what to be thankful for. Every moment is a gift.” I said.

“But to live with both! That shouldn’t be possible.”

“Yet here I am.” I said.

“I’m so very sorry.” She said, reaching out to touch my hand.

I shrugged. “It really is all good. I’m living my best life because of and in spite of the MS. I just gotta sparkle.”

She smiled at that. I’ve been thinking of this conversation since I got home. I cleaned while I thought it over. I suppose for most people, hearing that someone has Multiple Sclerosis is a sad thing. I’d like to think I have her empathy rather than her sympathy though.

I think people need to change the way they think of those that are disabled. We don’t need your pity or your sympathies. But if you could try to learn, try to understand what we go through, that would be awesome. Empathy rocks.

I figure that regardless of what we have to live with, we decide to live. We look at the sometimes impossibly huge mountain in front of us and say “Screw you!” and either climb it or find a way around it.

I’d like to change people’s reactions to letting them know that I live with a disability and a disease. Instead of getting offended, I take the opportunity to talk about my disabilities, to educate others. How will they learn otherwise?

We are not brave. We are courageous. We are purveyors of our own bodies as we try to make sense of the world around us, even as the world within us changes shape.

We are warriors.

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Disabled and Fabulous

61IpxC8NQlL._SX425_I’ve come to realize that sometimes, I have to look at things in a different way.

Recently, I experienced what is known as ableism. I was asked why I was taking the elevator when everyone else was taking the stairs. “It’s just four flights of stairs, Jamieson.” They said. “You don’t have to be so lazy.”

I laughed it off and briefly explained that going down stairs is almost impossible for me as that relies on my balance and co-ordination. I can do it, but it’s difficult. They nodded, but I could tell they didn’t get it. I could see it in their eyes, that they were just agreeing with me so that they could change the subject.

I came home and realized that the comment was still bothering me. I wasn’t angry, not really. I realized that it was acceptance of something I had long denied: that the world is made for the able bodied.

Before this, I had never really considered myself disabled. Now, I know that I am disabled and that I carry a disease; I live with my cerebral palsy and multiple sclerosis every day. However, I do everything I want to do, it just takes me a little while.

Having someone call me lazy because I took the elevator was like a slap in the face. That wasn’t the only occurrence, though. While out and about the other day, I had no choice but to go down a flight of stairs. I did so, holding on to the railing. A man saw me and asked, “What’s wrong with your legs?”

“I’m disabled,” I said quietly. It felt odd to say that word, but it was the quickest way to get the man to understand. “I have multiple sclerosis and cerebral palsy.”

“Shit.” He said. “That’s worse. I just thought you were injured.”

This brought home something for me. It had never occurred to me that I “looked” disabled, that my walk could make it that evident that there was something wrong with me. I had always assumed that my walk was fine, that it even passed for someone who wasn’t disabled.

This, paired with the elevator incident, really made me stop and think about who I am and what I carry inside me. I always try to avoid the term disabled and even go so far as using the term “differently abled”, referring to the fact that I lived beyond my disability.

I stopped and thought about it and have been doing so for the past week. In the end, I’ve come to the following realization: the disabled people that I know are some of the most amazing people I know. They live despite limitations, boundaries or borders that they face. They live when there are challenges, they face every day, be it doors, walkways, roads or transit that was not made for them but instead for our able-bodied brethren.

Yes, I live in a world made for others, created for those that can walk with no issues or no limitations. Yes, I live in a world that often doesn’t stop to consider what disabled people have to go through every day, just to live their lives.

And yet, they do so with courage and verve. They do so because they know of no other way. They do so because they want to live and to prove to all those people who tell them that they can’t that, in fact, they can. They are some of the most amazing people I know. They own their disabilities completely.

And I am one of them.

I wear my disability openly on my skin and within my bones. You can’t see my disease but it’s there. I live with a physical disability and a disease and I am proud of who I am. I am proud of everything that I accomplish.

So today, I tell you this: my name is Jamieson and I’m disabled and fabulous.

And I fucking sparkle.

 

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