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 | Leave a comment

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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Heavy Metal Days and the Strength Card

two-steps-at-a-time-coverI am in pain of some sort twenty-four hours a day, seven days a week. I never get a vacation or a day off, I never get to go on a holiday from the pain. It is my constant companion that lives beneath my skin.

For the past two days, I’ve been experiencing spasms that started in my right shoulder. Today, they moved laterally to encompass both shoulders and then they felt like taking a longer sojourn down my right side. My arms hurt, my legs hurt, my back hurts, my neck hurts, everything hurts. My shoulders are holding the brunt of the pain and its like a fire is running along my back.

But I don’t let any of that stop me. Yesterday, I went to work, went for two walks and did my workout and meditation. Today, I went for two walks during my work breaks and I will more than likely go for a swim and do my meditation. I have a life to live, after all.

I am a Tarot reader and one of the cards I draw a lot is the Strength card. I love its message of internal strength, of compassion for myself as well as others. I love what it symbolizes, that true strength comes from within. I had a friend tell me that I had to figure out what my fascination was with the Strength card, why I felt such a pull to it.

In the end, it’s because I am strong. How else could I get through every day? How else could I take everything day by day if I was not strong, if I did not carry a reserve of strength within me to do what needed to be done? People often tell me that I am very brave to live the way I do, to not let my disability and disease stand in the way of living.

I don’t know about bravery, but I will admit to being strong. It’s the only way I know how to be.

I have days where I can look past the pain, where it’s at a lower volume. It’s as if Max Shadow and Cedric Paulson (the MS and CP I live with) are playing music and every flash of pain is a note playing inside my body. Some days they are playing top 40 hits, songs with lots of beats and a good rhythm. Sometimes, they are playing torch songs, ballads filled with infinite sadness. Other days, they are playing rock and roll, heavy on the bass and percussion. Some days they are playing heavy metal (their music tastes are very eclectic). Those days are the worst.

They are the days when I am fighting fatigue, brain fog and a host of other symptoms because I am so focused on living past the pain.

Today is one of heavy metal days. But here I am, sitting down to write this. It is always my hope that, in writing about what I carry inside of me, I will make sense of it. I will make peace with the pain for it is the way it has always been.

I always remind myself that I have a choice: I can lay down and quit, or I can work past the pain and keep on rocking.

I always choose to keep on rocking, wouldn’t you?

Posted in Brain Fog, discomfort, Fatique, Spasms | Leave a comment

The Positivity of Time

Two steps at a Time coverI measure my life in terms of positivity.

That might seem odd to some, but it’s just how I roll. I’m in pain all the time, but you wouldn’t know it. Either my legs are spasming or my back is quaking or my shoulders are shaking, but I don’t let it bother me. What’s a little (or a lot) of pain when there is a life to be lived?

I was reminded of how far I’ve come this afternoon. In 2014, I moved to a new apartment. I remember going to get groceries and attempting to carry them back to my new home. The walk, BMS (Before Multiple Sclerosis) would have taken me ten minutes or so as the grocery store was just down the street from my place.

Instead, AMS (After Multiple Sclerosis) the whole trip took me about forty-five minutes. It was agony and I had to keep putting the bags down as my arms couldn’t handle the weight. My body was shot afterwards and all I could do was rest for the evening. My body, mind and spirit were done.

I was reminded of that trip today. We are moving offices at work, so I had to bring all my personal effects home. I had four large bags to take home and they were heavy. I wasn’t sure how I would do trying to take them home on the bus, but I would give it the old college try.

I managed to get them from the office to the bus stop. Thankfully, a lovely woman helped me get the bags on to the bus. I was worried about the walk to home after I got off the bus, though. That would be the real challenge. The distance from my bus stop to my home was about the same length as it was between the grocery store and my apartment three years ago.

Getting off the bus, I felt the weight of the bags but knew, somehow, that I could do this. I had three people offer to help me on the way; I guess they could see me struggling a little bit. I thanked each of them because I knew, without a doubt, that I could do this. I made it all the way home on my own. My arms are the tiniest bit shaky, but compared to three years ago where I was done for the rest of the day, today I sit here writing this.

For me, that is quite the accomplishment. It’s a cause for celebration because it’s proof of how far I’ve come. I remember how despondent I was three years ago carrying my groceries home. When I compare that to how I feel right now? No comparison.

So tonight, I am going to be thankful that I am on the right path to health and I’m going to celebrate. Life is meant to be lived.

And I’m going to keep on living.

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Falling Through the Air

Two steps at a Time coverMy left leg has been spasming for five days.

It’s always in the same place, the thigh. The spams aren’t painful, but strong. They last for a few seconds, the longest has been close to thirty. Normally, my spasms come on quick and then they’re gone, fleeting and forgotten.

It’s been five days now, which is new for me. I don’t know if it’s the Multiple Sclerosis or the Cerebral Palsy as they both share spasms as part of their symptoms but as the MS is more prominent on the left side, I’m going to assume it’s the MS.

The spasms are usually a warning sign that something is coming, that I have to be ready. This afternoon, while I was walking with a co-worker, that something came in a big way.

We were walking and talking about books we love when my left leg gave out on me. I tried to right it and it caught on the sidewalk and then I was falling. It felt as if I was swimming through the air, everything seemed to move so slowly, as if the air had become water. At the same time, though, it felt like everything was happening too fast.

I had both arms outstretched, knowing that the best thing I could do was to just fall and not fight it. I saw a bike rack in front of me full of bikes and I hoped that I wouldn’t fall into that, that I would be spared that kind of pain.

Thankfully, my body finally did fall. It’s like it folded in upon itself. I landed hard on my left knee and ended up on my back staring at the sky. I saw a cloud that looked like a face looking down at me. Then there was the sound of footsteps. A man held his hand out on my left side and my co-worker held out her hand on the right.

I put both my corresponding hands in theirs and they pulled me upright. The man had kindness in his eyes rather than derision. He was still holding my hand as if he was afraid to let me go in case I fell again.

“Are you okay?” He asked.

“Yes, I’m fine.” That’s my normal response, even when I’m in pain, but it surprised me that I actually meant it. I wasn’t trying to brush him off.

“Are you sure your okay?” He asked again.

“Yes I’m okay. Thank you very much, though. You’re very kind.”

He smiled and then slipped away into the crowd of people walking away. My co-worker stood close to me. “You’re sure you’re all right? I saw you falling but wasn’t fast enough to stop you. I would have reached out and grabbed your hand.”

“I’m fine.” It surprised me how much I meant it.

As we returned to work, I reflected on what had happened. Normally, I would have walked away from anyone that had shown concern. I would have felt compelled to offer an explanation about the CP and the MS, some reason about why I fell. I would have been embarrassed and would have beat myself up for the rest of the afternoon and evening over something I have no control over.

Instead, this afternoon marks a turning point for me.

I accepted that kindness and didn’t jump to the conclusion that people were looking down at me. I let myself fall because it’s what the body needed to do instead of fighting it. And when I said I was okay, I wasn’t lying. I was actually okay; I was all right. I got back up and kept walking and did it with a smile on my face.

Sure, I’ll hurt later. But tomorrow is another day.

Posted in Balance, Falling, Spasms, Symptoms, Walking | Leave a comment

What I Have Learned

Two steps at a Time coverThree years ago, I embarked upon a journey.  I had no idea where it would take me or what it would do to me. Nor would I know who I would become.

Three years ago, I started my Copaxone treatment. This is a daily injection that I take to halt the MS. At first, the very thought of injecting myself was rather frightening. This might sound odd as I have three tattoos. But that’s body art. This was injecting myself on a daily basis.

However, the injections were the start of something miraculous. I started eating better and changed my diet. I cut out pop with aspartame, quit smoking and started having more salads on a voluntary basis. My diet would change once more, becoming increasingly healthy.

I did my first MS Walk and started a workout regime shortly afterwards. Throughout the almost three years, my balance and the overall strength of my body has increased. I still do my workout three times a week and have been increasing the number of repetitions.

This journey also led me to looking after my Spirit and mind as well as my body. Injections, medication and diet are only part of the battle. I embraced Tarot cards, Manifestation, Reiki and essential oils. I started working on letting go of past hurts and grudges, things that I had held on to for far too long.

It took three years but I honestly don’t recognize who I used to be. I still don’t know who I will be, but that’s part of the fun. I have learned many things along the way:

* I am stronger than I think I am: I may have Multiple Sclerosis and Cerebral Palsy, but that doesn’t mean I am not strong. Strength comes not just from the physical but also the mental and spiritual.

* I can do anything I put my mind to: Sure, it may take me longer than someone else, but it will still get done, my way.

* If I fall, get up: In the beginning of my thus far three year journey, I fell all the time, covering my body in countless bruises and bumps. While I did consider just laying down and giving up, I did eventually get up. A fall doesn’t mean you’re done; it just means you have to get up and keep going.

* Kindness is always better: While it would be understandable to be angry about all of this, even three years later, I chose the path of kindness. I am kinds to others and am working very hard on being kinder to myself.

* Breathe: Tomorrow is another day. If I have a bad day, I know that a good day will be coming.

I have no idea who I will become. That’s for time and for fate to decide. In the meantime, I’m going to live the best possible life I can and be the best me I can be. Sure, there will be bad days, but that’s what coffee and the occasional piece of chocolate were made for.

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Zombie Hordes

Two steps at a Time coverAs I got off the bus and started towards home, a group of high school boys got off the bus and started walking behind me. I could hear their conversation and all of a sudden, it became quiet, almost stilled.

Then I heard the sound of laughter. “Hey man, look at this.” I heard one of them say. “Look at how he walks.”

I heard them shuffling behind me but didn’t stop to turn around. I didn’t stop walking, I just kept moving forward. Another one said “Come on guys, come on!”

The group of them crossed the street and started walking to match my pace. Only they were exaggerating my movements. One of them was walking dragging his feet, another was walking with both feet pointed inward taking huge, big steps.

It amazed me that, in trying to humiliate me, it just showed how cruel they were. I stopped, watching them. The zombie horde stopped, too.

I never know what to say in situations like this. I have a lot of bravado and bravery inside of me, but it always seems to leave me when I’m confronted with people making a comment about, or in this case mocking, my disability and disease.

Normally, the words just flow off of my tongue or out of my fingers, but in that situation, I never know what to say. It’s like my words shrivel up and I can feel them drying out on my tongue. One of the people I know has suggested I carry card with me with info about Multiple Sclerosis and Cerebral Palsy, but even if I had those done, I wouldn’t be able to hand them out to a group of teenage boys.

I did the only thing I could think of: I took a bow. It involved no words but let them know that I had seen them, each and every one of them. They had the good grace to look somewhat sheepish. I didn’t think it was worth it to say anything to those that wouldn’t listen.

All I can do is repay unkindness with kindness. All I can do is brush away the malice and welcome in the light. Tomorrow is another day and for that, I am thankful.

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