Today Is A New Day

SmallOn December 30th, 2012, I woke up to find that my world as I knew it had changed.

I woke not knowing how to move my body. It was no longer mine and I was no longer able to control it. It would be months before I knew what was wrong. Eventually, I was diagnosed with Multiple Sclerosis.

It was a long uphill climb from that day five years ago to today. I had to learn to do everything all over again, every simple little task that I had done previously without thought, I had to learn anew. The past five years have taught me a lot about myself, however.

When I learned to walk again with the aid of a cane, I learned that some mountains could be flat but that they, too, could be conquered. When I was able to finally take a shower again, able to hold myself upright and balance myself, this taught me perseverance. I constantly had to fight against my body, against the boundaries that it now tried to impose upon me.

I had to reach down deep within myself to find the courage that ran within. I had to fight against spasms, blindness, tremors, fatigue, brain fog, difficulty speaking and more. I had to learn what it was to have courage.

I’ve learned a lot in the five years that I have been battling my body. Most of all, I learned what it truly was to be thankful and grateful for what I have and what I’m able to do.

I don’t recognize myself. Five years may seem like a relatively short time, but to me it’s as if I left one life behind in 2012 and started a new one that day. I am not the same person that I was. Every day is a gift to me, something new to enjoy and to experience.

I’ve learned that I’m capable of more than I think I am. That I’m stronger than I think I am. That there are days that will be worse than others, where my symptoms are closer to the surface and show themselves more freely. That’s okay, because I’ve learned that life is all about balance, about the good and the bad and it’s all about give and take.

I lived in fear of this day for a long time until December 30th, 2015 where I changed what the day meant for me. For two years, I believed that I would wake up on this day and that everything would be back the way it was, that I would be bedridden and that the dark forest would have sprung up around me without warning.

New years wouldn’t be a celebration for me. I wondered how long it would be until what I feared most would happen, how many extra days was I going to have until I was back in the dark?

When 2015 came, I knew that something had to change. I finally did what I’ve done all along: I took control of my future. By banishing my fear of the day and changing what it meant to me, I changed something within myself. When I filed for divorce, I let go of two things that were holding me back: my fear of December 30th, 2015 and who I had been when I was married to my ex-husband.

Now the day is a celebration and a day of joy for me. It’s a day of remembrance, of the life that I lived in the past, but also a celebration of the life that I live now and what will come. Now, the day is a joy and a day of mindfulness before a new year begins.

Every day is a new day and I celebrate every one.

Posted in Balance, Brain Fog, Depression, Falling, Fatique, Spasms, Speech, Symptoms, Walking | Tagged , , , , , , | Leave a comment

The Invisible Sign


I was heading towards the bus this afternoon when one of those people that are asking for money for a charitable organization on the street stopped me. “Excuse me, Sir? How are you tonight?”

“Good. Going to catch a bus.”

“Then I won’t keep you long. We help disabled people live a better life. Do you know any disabled people, sir?”

“I do. I’m disabled.”

He looked me over with a look of shock on his face. “Oh, you are?”

He didn’t believe me. Without knowing me, he judged me because he couldn’t see my disabilities.

I know that I’m lucky. Unless you really watch me walk, my Cerebral Palsy and Multiple Sclerosis are invisible. It’s not like I’m wearing a green and orange neon sign above my head that flashes out the words “Invisibly Disabled”.

There were a lot of ways that I could have responded to this.

People have suggested that I carry cards with me telling people what I have. Another suggestion is to carry pamphlets in my bag to hand out or cue cards with notes that I could tell them on the spot.

I haven’t done any of these things. I used to run away and not say anything. Then I would berate myself for not saying anything. I know that’s not the way to do things either, that my disabilities should not be a source of shame.

They are part of me. They are part of me, even if they can’t be seen. I had to make peace with Cedric and Max a long time ago, otherwise how would I truly live? If I hated my CP and MS, that would be like hating myself. That’s no way to live.

If there was a neon sign above my head, I would hope that it would say sparkle on or dream big, something like that. Something hopeful that would fill me with hope. I also realize that I can plant the seed but it’s up to them if they want the flower to grow.

So, instead of getting angry at the man, who was just doing his job, I gave him a small smile and said “I am. I give to the Multiple Sclerosis Society of Canada in hopes that they will one day fine a cure. I apologize that I can’t help you.”

I saw his smirk disappear and I walked away, hoping that I had planted a seed that would hopefully grow into a flower.

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Spooning with Spoonies at Can-Con 2017

Spoonie photo

On Saturday, I had the pleasure of appearing on a panel at CAN-CON: Conference on Canadian Content in Speculative Arts & Literature.

The panel was titled Spooning with Spoonies. Its subject matter dealt with sexuality and disability and how both are represented in fiction.

As a writer, I’ve recently begun to include people with visible or invisible disabilities into my work. I once thought that writing a blog would suffice, that my baring my soul here would be enough. A friend asked me a few years ago if I would ever consider putting a character with Multiple Sclerosis into one of my novels.

My reply was that this blog was enough. However, the more I read, the less I’m convinced that’s true. I have only read one book that featured a character with Multiple Sclerosis. That book was Journey of a Thousand Steps by Madona Skaff-Koren, a truly wonderful book that you should totally check out. Learn more about Journey of a Thousand Steps here:

There are all sort of disabilities and diseases that are not represented in fiction or, if they are, they are usually the quirky best friend. Never the main character, never the love interest. Their stories are sidelined and sometimes used for comic relief.

As a sexual being and having both Multiple Sclerosis and Cerebral Palsy, a disease and disability that you can’t see, I knew that this wasn’t right. We deserved representation in literature, we warrant our time in the spotlight as the love interest or the hero.

When I was asked to speak on the Spooning with Spoonies panel at CAN-CON: Conference on Canadian Content in Speculative Arts & Literature, I immediately said yes. The entire panel consisted of authors from the Spoonie Authors Network, a blog that I write for. You can find that blog here:

It was to be my first time at Can-Con as an author and my first time speaking publicly about having CP and MS. All the authors on the panel and on the Spoonie Authors Network live with some kind of disability or disease.

It was an honour to be sitting on a panel with such renowned authors and a privilege listening to the stories of what they live with. More than that, it was a pleasure to take questions from the audience who were genuinely interested in what we had to say and how they could improve their own writing.

I felt like we made a difference, that the people in that room left changed, if only a little, by what we had shared with them. More than that, it left me changed. When I write Love and Lemonade, the third book in my Lemonade Series, it will feature a character that lives with Multiple Sclerosis.

I am eternally thankful to Can-Con for giving us the space to have this kind of a conversation, for giving us the comfort and the safety of being completely open about who we are. I am also immensely grateful to Cait Gordon, first for asking me to be part of the Spoonie Authors Network and then for asking me to be part of the Spooning with Spoonies panel.

Hopefully we can change the world, one spoon at a time…

Posted in CAN-CON, sexuality, Small Victories, Spooning with Spoonies, Talking | Tagged , , | 5 Comments

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.


Posted in Balance, stairs, Walking | Tagged | Leave a comment

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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