Claiming my Shadow Self – On Writing Disabled

Years ago, a friend of mine asked me if I would ever write a novel with a character who had Multiple sclerosis. I gave him a definitive no. When he asked me why not and pointed out that people would want to read a book with a character that looked like them, I said that writing my blog was enough, that I would never write a book with a disabled character.

That was saying a lot as I live with both Cerebral palsy and Multiple sclerosis.

I was born with Spastic Cerebral palsy and I’d had relapse and remitting Multiple Sclerosis for a couple of years when my friend asked me that question. For a few years, writing my blog was enough. I was able to tell people about my story and my life the way that I wanted to. Though I’m a writer, I didn’t put any disabled characters into my books. I told myself that was because I wanted an escape. Reading should be entertainment and writing should be an escape.

To my mind, writing about characters who were disabled would be like escaping into myself and I didn’t think that it would be very therapeutic. Indeed, I read and wrote books in order to escape myself and the predicament that I found myself in. Who would want to read a novel with a disabled character?

I had read one back when I was a child. It was a novel called Mine For Keeps by the author Jean Little about a young girl that has Cerebral palsy. It had been a revelation when I was a child to read a book with a character that lived with the disability that I had. I read that book until it fell apart and pages were lost. Still, I read the story wit its missing pages, able to fill in the missing story. I read it every time that someone made fun of the way I walked. I read Mine for Keeps every time I felt that I didn’t fit in because of my physical disability.

Why then was I so hesitant to write about a character that had Multiple sclerosis? I thought about it for a long time, the question was always in the back of my head and I wondered why I didn’t want to write about characters who were disabled. In the end, the only reason that I could think of was that I was still coming to terms with my life as it was now. In reality, I was ashamed of having multiple sclerosis, thinking that it made me look weak despite the work I had done to try and fight against it. The more I wrote characters who were not disabled, the further I got away from myself.

By this point in my journey, an idea had begun to take form in the back of my head. I wanted to write a book of positivity for others that might be going through what I was going through. I wanted to inspire people somehow and hopefully inspire myself. I had taken a lot of great strides in my journey with MS, so it was my hope that I could help others live a better life. However, when I tried to sit down and write it, I only had twelve pages of writing. I was left with a title that I liked and little else.

I wrestled with the idea of writing a memoir. I knew that if I was going to write my story that I would have to write all of it or nothing at all. My mother asked me why I wanted to revisit all of those moments that had left me scarred and at times broken. I had to think about my response before I gave it, mostly because I was trying to figure out the why of it for myself. “I think it’s because if my story could help just one person, then it will have done its job. It will be therapeutic for me, too. I can’t carry all of this anymore.”

I had no idea how much like therapy the book would be. During the writing of my memoir, I had to reach deep into myself and talk about things that I had thought would remain a secret. I had to examine why I felt shame when I looked at myself in the mirror, why I thought that having multiple sclerosis made me weak when everyone always told me how strong I was. I knew that writing the book would take me into the darker part of myself, the shadow self that I tried to hide but it still lived within me.

Years ago, I had given names to my disability and my disease: my multiple sclerosis became Max Shadow. I felt the name suited him as he was an unknown as he hid in the shadows and liked to change the way he behaved, moving and shifting and changing in the shadows. Never seen but so very present. I named my cerebral palsy Cybil Paulsen. The name was based around Sybil, a 1973 book by Flora Rheta Schreiber that I had read about Sybil Dorsett who lived with multiple personalities. When I had named him, I felt like he was a personality living within my body that I couldn’t see but affected so much of what I did and how I engaged with the world. I knew that I would have to go deeper into my journey with Max Shadow and what he, Cybil and Max had all become together.

The book took me over a year to write. During the writing of Little Yellow Magnet, I thought I would come to understand my disease better. What I didn’t count on was that Max’s voice would become so clear to me. More than an idea or a phantom shape within my mind, the more I wrote about my journey with MS, the clearer that he became in my mind. He was no longer a shadow of a spy or someone that had stolen something from me. Writing Little Yellow Magnet showed me what I had gained and what I had to be thankful for. The writing of the memoir showed me what I truly had to be grateful for.

After writing Little Yellow Magnet, I no longer hated Max. Yes, he was my shadow, but not one of malice or misdeeds. If I closed my eyes, I could see a large rock standing in the desert. This was my cerebral palsy. It cast a shadow along the sand and this was my multiple sclerosis. I stood atop that rock. He also became a stronger presence in my mind. The less I feared him, the more he helped me to accomplish. Cybil and Max had stopped battling with each other so much, though I could still feel them occasionally knocking heads with each other.

Writing the memoir seems to have opened a flood gate of words where disability is in full representation. I went from writing nothing that was inclusive to disability everything containing pieces of me and the representation that I needed to see in the written word all along. I had thought that including disabled characters would be difficult to do and would take a lot out of me. In the end, it’s been a very freeing experience. I’ve been able to examine different parts of my journey with my MS and with Max through the guise of fiction.

In my award-winning novel Love and Lemonade, I wanted to look at all the different kinds of love there were in the world. I knew that I wanted to include a disabled character of some kind and at first I was tempted by the idea of having a character that used a wheelchair. Max gave me a mental talking to. I don’t know anything at all about being in a wheelchair. What I do know is what it’s like to have multiple sclerosis. I wanted to really show what it was like to date when you are not only gay but disabled. I wrote my own experiences into the novel using the character of Zack. His passions are my own as are his dating mishaps. Dating in the gay world is difficult enough, it’s almost impossible if you are disabled. I really wanted to look at that angle of Max and what it’s like to date disabled. Thankfully, Zack got his happy ending with Will, but only after a few false starts. It was cathartic to examine my own journey with love in this way and the happy ending that I’ve found with my husband, except it’s not an ending. It’s only the beginning.

Nothing Without Us is an own voice anthology of stories by person’s living with disabilities. It is diverse and wonderful and when I saw the story call out, I knew that I wanted to write a story to submit for it. It could be any genre, so I fully intended to write about a wizard who has MS. I wanted it to be a fabulous story filled with humour and all things magical. What it ended up being was an examination of my fears and my relationship with Max. In the story, the wizard Jefferson goes to visit the oracle to try and find a cure for his multiple sclerosis. In the story, he has to descend hundreds of stairs to find the oracle. I worked my own fear into the story. One of the worst memories with my MS was from the very beginning. I was at work and there was a fire and they wouldn’t let me ride in the disabled elevator. I well remember going down sixteen flights of stairs, holding on to the railing and my cane for dear life. It was the most frightened I have been, before or since. I tried to put that experience into the story and really to examine my love hate relationship with Max Shadow and what that relationship means to me, how it has shaped me.

In my novel Beyond the Stone, which is coming out soon, my disabled character is the main protagonist. Bane is a rough and tumble kind of guy who is also a Rook, a race of supernaturals that are usually shape shifters, except that Bane can’t shift. Though he looks normal to the mortals around him, he is viewed as disabled and half a man by the supernaturals that live around him. Though his issue can’t even be seen, he is shunned by a lot of different people in the supernatural race. I wanted to take a deeper look at what it was like to live with an invisible disease and the experiences that I’ve had with that. In the novel, I even used one memorable date that I went on. I didn’t tell the man that I had MS before we met. I didn’t want it to be the first thing he would know about me. When he arrived, it quickly went downhill. When I finally did tell him about having MS and CP, he said that I was on medication and so I was cured, right? I explained to him that I would live with cerebral palsy and multiple sclerosis for the rest of my life. He then asked me what it felt like to live as half a man. To say that the rest of the date didn’t go well is an understatement. I wanted to write some of that pain into the character of Bane and hopefully let some of it go.

In my new novel, The Book of Lost Souls, I wanted to try something different. This novel took a while to figure out what it wanted to be but when it finally decided, I was surprised to be writing a gay erotic romance. I’ve written over fifty gay romance novels and not one of them have a character with a disability. In all those pages filled with so many men, not one of them live with a disability or a disease. I’ve never read a romance novel with a disabled character. I decided to change that, not only for myself but for other people who read romance novels and hope to one day see someone like them reflected in the pages. In the book, Xavier is a wizard who was born with Cerebral Palsy. He walks with difficulty but he uses a cane that is covered with runes. Once again, his journey is my own. I remember at the beginning of my journey with Max how I thought I would never find anyone to love me as I am. I thought that I wasn’t worthy of love because I was disabled and living with a disease. I was dating someone before the MS hit and when it did, he called me broken. After that, I believed that I was broken, that there was something wrong with me and because of that, I didn’t deserve love. Thankfully, I realized that everyone deserves love, no matter what they live with on a daily basis. I can’t wait until Xavier realizes that for the first time and hopefully, he will let Felix love him completely. It’s been thrilling to write a romance novel with a disabled character and to explore what issues that Xavier deals with. One of them will be one that I have, being uncomfortable with how he views his body because of his disability. Again, I’ve written in my own voice and Xavier will have my disabilities because they are the only ones I know.

Through all of my writing lately, I’ve tried to look at the different facets of how Max Shadow, and my multiple sclerosis, has shaped my life. By writing about my multiple sclerosis and cerebral palsy in all of these different ways, it’s helped me to claim my disability, to really own my MS, to see them both as friends as opposed to the house guest who won’t leave. What I’ve come to discover is that this journey is just beginning and Max, Cybil and myself still have a ton of adventures ahead of us.

All I need is an open mind and a blank page in front of me and the rest will write itself.

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