Happy Birthday Max Shadow!

I was diagnosed with Relapse and Remitting Multiple Sclerosis nine years ago today. I thought about what I wanted to write to honour today and the following letter to my multiple sclerosis is what came out. I hope you enjoy it. I published this letter on Two Steps at a Time, my blog where I write about having multiple sclerosis and cerebral palsy. I thought it was good enough to share here, too.

Dear Max Shadow,

It’s hard to believe that you are nine years old today.

I still remember the first time that I met you. The moment of your birth came a day before my birthday. I didn’t have any presents to give you, but I knew that something was arriving that day. I just had no idea of what would be happening to me that day.

Except that’s not true, is it? I knew what was coming, but hearing it said out loud, having the doctor name you, well no one can prepare for that. I told myself that I was okay, and I was and wasn’t at the same time. The doctor was very gentle as he handed you to me. I looked down at the clipboard showing the test results and knew only a subtle kind of peace.

You had me convinced that I was crazy, that the lack of control over my body could be all kinds of things and when the doctor named you, I knew blessed relief. I was not crazy; I was not losing my mind. What was wrong with me had a medical name, even though what you did to my body could change in an instant, depending on your mood.

Quite often, you tried to speak through me, twisting my mouth so that I had difficulty speaking. Sometimes, if you felt like it and you often did, you would increase the pain levels within my body so that everything felt as if it were on fire. You would take away my sight so that everything was blurry or out of focus and no matter how many times I rubbed my eyes, the blindness would stay until you let it fade until everything became clear again.

For months, I lost myself in the forest, unable to see past what was happening to my body and what you were doing to it. When the doctor named you, I cried, but there was joy within them, the salt contained in my tears cleansing me as they flowed through my body and fell from my eyes. The salt burned away a large part of the forest, the salt in my tears chasing away the dark shadows that had surrounded me for so long.

You never intended to help me, you were only interested in taking from me, like all the bullies that I have known throughout my life. So, I did the only thing I could think of doing: I chose to stand up to you. I chose to fight against what you were trying to do to my body. You had taken away most of my control, but I did whatever I could to control what I could. You took my memories from me, so I made new ones. You were unkind to me, so I showed the world kindness. You took my balance away, so I found a new way to work with my body. You made people look at me with pity, so I learned to love myself. You took away the direction I was going in life, so I chose a new one. You had filled my world with sadness, so I chose to look at the world with joy.

I also gave you a name of my own. The doctor had called you Multiple Sclerosis, but I chose a different name for you since I knew you so well, so intimately. I chose to call you Max Shadow. You liked to hide within me and rarely came into the light, letting me do all the work. I believe in a lesson I learned from one of my favourite book: fear of a name only increases the fear itself. With a name given to you, I no longer feared you.

I know that I’m a better person now than I was nine years ago. You taught me how to be truly grateful for everything I have in life and how to be thankful for every moment, every simple gift and small joy that came my way. My life may have taken a direction I could never have foreseen when I met you, but I am so thankful and grateful for you, Max. I am thankful for you because I have the life that I do now and I’m grateful because had I never met you, I have no idea where I would have ended up.

I’m not going to say that everything happens for a reason. I really hate that phrase. There is no reason for the suffering that I went through because of you. However, without you I would not have grown into the person that I am now. Without you Max, I would not have learned to overcome or to thrive instead of just survive.

For your birthday, I am giving you my thanks because of what you have taught me. I hope that is enough. For myself, I turned this day into a celebration so that I can remember what you took from me and how I have thrived because of you.

Jamieson

A Song on the Wind – A Poem

I can feel the wind holding me.

Lifting up my arms,

I feel its embrace

as it reassures me,

tells me its secrets.

I tell it some of mine,

letting the wind pull them from me

like gifts, each one of them

given to the wind like an offering.

Letters take shape in the air;

I can see an “a” and the word “story

followed by the words “from” and “within”.

I let the wind take away

what I no longer need,

all that I have been

holding onto; that’s my sacrifice.

As the words are torn from me,

I can see blood in the air

but I can also hear song,

music that I eventually realize

has the same beat of my heart.

I feel the wind and I give it everything

so that I can begin again.

To Conjure Fire – A Poem

I’ve realized

that you are still inside

of my head, taking up residence,

claiming space within my mind

when you have no business being

there in the first place.

I’ve tried to think of why I’ve held

so tightly to you and the sound

of your voice when it was filled

with so much hate. I’ve attempted to

make sense of why I would hold onto

all the doubt you created within me;

it rang so loudly, my body was filled with

a storm that only found its ending

when I broke up with you.

I think that I’ve held on to your voice,

the blanket of cold that would fill me,

because part of me, however small,

still believed that I was worth nothing.

That tiny part of me still believed the lies you told,

still believed that I was broken

in some way, even though I know

that I’m not.

I don’t want to hold onto you any longer,

the coldness you evoked in me

where there should have been warmth,

or the feathers of fear that formed shadows

on my walls when I should have

been able to conjure fire.

You have remained a parasitic guest in my head

for over ten years, trying to build up the walls

inside of myself so that I would remain in the darkness

and for every brick you put up, I took two down.

I built barriers inside my skin to protect myself from you

and with your voice gone from my mind,

I don’t need them anymore.

Now that there are no more walls

and no more you, it’s like I can see

myself completely for the first time.

Without your voice speaking from my mind,

I like myself even more than I did before

Ten years is too long to hold on to someone

who never loved me in the first place.

I let the ghost of you go

and I’m finally able

to make fire.

Beyond the Stone – In Audiobook!

I love audiobooks so much! They can connect you to a story in a way that reading it on the page or the e reader can’t. Someone else is telling the story to you and bringing it to life in your imagination. I’ve always loved the intimacy of audiobooks, the closeness. Nothing but you, the sound of a reader’s voice and a tale well told.

I was overjoyed when I found out from my wonderful publisher Renaissance Press that Beyond the Stone, the first book in The Clocktower Series, was becoming an audiobook! Better yet, I got to pick the actor. I would be working with them to make sure the book and the characters voices sounded just as I wanted them to.

After going through audition tapes, I chose actor Paul Milando. Even though I knew that I could have chosen a full cast to voice my book, and I’ve loved a few of these productions, I love the idea of one actor taking us on a journey. There’s something even more intimate about just one person telling the tale to you.

I would listen to each chapter as Paul finished them and give him notes on characters voices and how I wanted them to sound, also pronunciation of names, different magical races and character backgrounds. Paul was a total champion and dove right in. It was so wonderful listening to him bring my book to life. Listening to it chapter by chapter, he pulled me along and I was entranced by the story that I’d written as it came alive in my ears.

He truly has done an amazing job and the sad part is that we’re almost done the journey together. Paul sent me chapter 35 today and that means there is one chapter left. That makes me sad that our time together is almost over, but happy because it means that you will be able to hear it soon.

Listening to the novel this way has deepened my knowledge of the world that I’ve built and it will make the four novels to come. Within the Flame: The Clocktower Book Two is done! I finished the first draft a little over a week ago. I’m letting it sit for a while before I tackle it in edits.

Thankfully, we all have Paul’s amazing job with Beyond the Stone to look forward to. I can’t wait for you all to hear it! More news soon on when it becomes available!

The Flutter of Leaves and Birds’ Wings – A Poem

It happened so casually this time.

Whenever I walked,

the shadows would follow me.

There are more of them in the sunlight.

I could hear the flutter of birds wings

though there were no birds around me.

When I got home, I was startled to find

that the carpet had been replaced

by a fine layer of grass.

I took a moment to look at the walls

and knew what I would see.

Sunlight filtered through my windows

and cast shadows on my walls.

I could see the trees moving in a breeze

that only I could feel.

I stood looking at the entrance into the forest,

the sway of the trunks and the flutter of leaves,

birdsong filling my mind as a strong breeze blew.

I knew how easy it would be lose myself,

to let the sadness take me,

especially when I had not recognized

the flutter of leaves and birds’ wings

that was within me.

I looked deeper into the entrance of the forest,

tree branches welcoming me,

wanting to wrap me in an embrace

that would not let go.

I had been here before

and I would be here again,

each time I had to look away,

to turn my back on the trees,

the lies that the forest told,

ones of salvation and understanding.

I had to turn away

each and every time.

I had to be stronger than the forest,

the solace it promised.

Looking at my body,

I knew that it had already taken so much

blood from me. I would not give it more.

Letting out a breath

that I had not been aware that I was holding,

I turned my back on the trees of the forest

and the song of false promises

that flew on the back of wings that

were made of shadows.