Visible Invisible

I was asked to write an article for work for International Person’s With Disabilities Day. I wrote the following. It was put on the web site at work in a permanent place along with other people’s stories about living with disabilities. I’m very proud of the piece and it got a lot of great reactions. Even better, it got people talking. The theme for this year was invisible disabilities. I didn’t know that when I wrote the article.

I hope you enjoy it.

I often feel as if I am living on an island.

I live with spastic Cerebral Palsy and relapse remitting Multiple Sclerosis. They are both invisible disabilities. They do show themselves from time to time when I have difficulty walking or speaking or trouble with balance and dexterity. On top of the physical ones, I deal with invisible symptoms like brain fog, crushing fatigue, tremors, spasms, blindness and others.

It is like there are two other people living inside my body and I am in a constant battle to gain control of myself. I feel that I’m both seen and not seen. I feel like I’m on an island within myself, that though people see me, they can’t see what I’m going through. Both the Cerebral Palsy and the Multiple Sclerosis come with their own individual challenges and there are many obstacles that I have to overcome in a day. Sometimes, even the most simple of tasks can get the best of me.

It’s one of the reasons I’m so open about living with my disabilities and what I go through on a daily basis. My frame of mind is that knowledge is power. If I’m able to help people understand what I live with, to help them see what it’s like to live with in maybe it will help them to learn something about themselves.

I’m fortunate that within the government, there are so many resources for people who live with disabilities and that most people have been open and accepting of my disabilities. It’s wonderful to work in an atmosphere where I feel seen, where there is little to no judgement. It makes such a huge difference and I don’t feel alone on my island.

However, there were times while working in the government that made me want to retreat to my island sanctuary. There was one instance where a colleague said that I couldn’t possibly have Multiple Sclerosis because I didn’t look sick. I tried to explain to her about some disabilities being invisible, that not everything made its presence known to others, but she kept saying I didn’t look sick. She just didn’t understand no matter what I told her. She shunned me afterwards because she thought I was faking it. When I went to my supervisor and talked to them about it, I was told I was making a big deal out of nothing. I felt dismissed.

When the Multiple Sclerosis first made itself known, I lost the ability to walk, speak or type. I couldn’t see very well either. I was bedridden for a month and a half. I was working for a director at the time. She was understanding at first, but then grew impatient at the amount of time that I was taking off, telling me that I was leaving her in a real bind. I worked hard to get to the point where I was able to walk with a cane so that I could return to work. I tried to do my work to the same standard, but was having difficulty. She told me that if I didn’t improve that she would have to let me go. Thankfully, I was able to find another position and left with my dignity in tact.

I’ve often struggled to be physically accommodated within the government. In one position, I was in a meeting on the sixteenth floor of a building when the fire alarm went off. With my balance and dexterity issues, stairs are my literal downfall. I can go up stairs with no issue but can’t go down. That day, I was told that I was not disabled enough to use the emergency elevator. My supervisor at the time said that I was perfectly capable of walking, so I would take the stairs with everyone else. I’m not sure how I managed it, but I am thankful that one I had three coworkers looking after me, one in front of me, one behind me and one to left of me. I held on to the railing for dear life, my cane tucked under my arm. When I got to the main floor, my body was completely shot.

Yet, for all of those difficulties being disabled in the government, I’ve experienced kindness too. The kindness of people has astounded me, time and time again. I’ve learned a lot about myself and what I’m capable of but especially when to use my voice and when to offer counsel. Most of all, even though my island still sits within me, surrounded by water and the whisper of leaves, I don’t spend nearly as much time there as I used to.

Working in the government while living with a disability can be challenging. However I’m accommodated now in such a way that makes my working life manageable. In the government, I feel seen. Though my disabilities are invisible, I am not.

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Have Cane Will Travel

The first snowfall may be pretty, but it also brings a host of other problems

I know that I have to be careful when I’m out and about walking in the winter. There is ice, the sidewalks aren’t even and can often be treacherous. I’ve taken to using my cane when I go out and about for my walks now. If I’m outside in the snow, I’ve made a promise to myself that I will always have it with me. That wasn’t always the case.

When I was learning to walk again back in 2013, I used my cane. It was a constant companion and helped me get to and from wherever I was going. After almost a year, when I was finally able to walk without it, I was happy to hang it up in the closet and have rarely taken it out again. I’ve been trying to figure out why this is, and I think it has a lot to do with what it was like during that time of my life.

Back in 2013, I was just trying to stay alive and take it day by day. My cane was my saviour at then. Over time, it became a reminder of the multiple sclerosis and how it had changed my life. I also noticed that people treated me differently because of it. I was almost never given a seat on the bus but the moment I got on with a cane, people would give me their seat right away.

I began to miss the days where I was treated like a normal person and not someone that would break in half should a strong wind pick up. I came to view my cane as a symbol of my disease and though I needed it to walk, I hated it.

When I was finally able to stop walking with my cane, it was a joyous day. However, there have been a few times when I wished it had been with me, when I would have relied on it, but I stubbornly pressed on without it. I’ve come to realize that I viewed it as a sign of weakness when it is really a sign of strength.

I’ve come to realize that my issue with my cane really had a lot to do with internalized ableism. I was not strong if I used a cane, I was weak if I had to rely on one. Now let me be clear, I don’t think this of anyone else who uses a mobility device. Only myself.

I have this misguided view of myself and always try to hold myself up to this standard which I have no hope of reaching. I don’t know when the idea took shape, but I thought that if I was using my cane that I was not tackling my disease or disability. I was letting them both win.

In reality, it’s actually the other way around. I’ve come to realise that my mobility device is a sign of strength. It shows the world that no matter what I’m going through, no matter how bad my legs or body are, that I will keep going, that I am mobile.

I need to let go of this internalized ableism, this idea that I’m weak if I rely on my cane, when it is really a sign of my strength.

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Letting Go Of Fear

I’m often surprised by my disabilities.

The other day when I was coming back from a walk, I opened my apartment door and was taking a step inside when my body decided to have a full body spasm. I lost my balance and fell into the kitchen doorway. I bonked my head a bit and bruised my left hand and scared the crap out of my cat. I was more worried about him than I was about myself, which is as if should be.

I was in a lot of pain for the rest of the day and had to remember to be kind to myself and treat myself with kid gloves. I used to hate having to grind everything to a halt when my multiple sclerosis or cerebral palsy made doing anything impossible, but I’ve come to accept it. I have to give my body what it needs.

When I began to fall, there was a moment of fear. I hate that feeling. I hate feeling helpless in my own body when it decides to do what it wants. Then come the questions: what do I think cause the body spasm? What caused me to lose my balance? What did I do the night before that could have triggered it? There is no rhyme or reason to my spasms or my loss of balance. It simply is.

That’s something else I’ve had to come to terms with as well. I used to wonder like everyone else what could have caused it, what I had done to make the spasms happen. I’ve lost my balance quite a few times. There was no warning, I was up and then I was down. I’ve come to accept that the falls just happen, the same as the spasms.

I’ve come to realize that there is a lot of fear when it comes to my symptoms. I never have any idea what my body is going to do or what symptom I will have that day. The days where I have difficulty talking or typing are the most frightening, as are the times where I have difficulty seeing. Then there are the ones like balance and body spasms that creep up unexpectedly.

As much as pain is a constant bedfellow, so is fear. I hate not being in control of my body and having MS and CP makes sure that I am not in control all of the time. I hate living in fear, having been afraid for a lot of my life. It’s a state that I know well.

I’ve also come to realize that I can’t continue to live this way. Pain is one thing, it’s so much a constant that it’s become a dull constant. I can’t live with fear. I hadn’t even realized that fear was so close to the surface, that it was coming along for the ride and colouring my actions and what I would do.

I have to let go of fear. I can’t be afraid to live my life the way I choose, always looking behind me for whatever will come and what I think will try to take me down. However, there’s something I always do and that’s get up and keep going. It may be at a slower pace than before, but I always keep going.

I already feel like I share my body with two other people, with Cybil Paulsen and Max Shadow. I don’t want to imagine a third unseen person living within me. I’ve come to look at Max and Cybil as travellers with me on my journey as opposed to enemies. I can’t let a third unseen being continue to haunt me. Today, I let go of the fear and embrace whatever happens. I have to let it go to the wind because as long as I’m afraid, I’m not really living.  

Today, I will embrace the possibilities and try to move beyond fear. I will let go of thoughts that are holding me back and look toward the future.

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Claiming My Shadow Self

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 an 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. 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, 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 in all of these different ways, it’s helped me to claim my disability, to really own my MS, to see it as a friend 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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Letting Go and Holding On

August 21stLife is funny when you stop to think about it.

I’ve been carrying around a thrum of sadness for a few weeks now. While my general outlook on life has been positive, there was still this ache inside of me. I didn’t know where it was coming from. I assumed that it had to do with the current pandemic and how much it’s changed our lives. The world has been a very sad place lately, so it wasn’t a surprise that I felt sad.

This was different though. It wasn’t a sadness because the world was in mourning for what it used to be. This sadness ran bone deep and though I meditated and tried to find an answer to why I was carrying this within me, its reason remained elusive. Oddly, it was thanks to Facebook that I figured everything out.

I was scrolling through the Facebook Memories on my wall this morning when I came across several memories from a few years ago, saying that it was the anniversary of when my life had changed. Then it hit me: I was officially diagnosed with multiple sclerosis on August 21st, the day before my 35th birthday.

All throughout today, I’ve been reflecting on that and the journey that began seven years ago tomorrow. This journey took me though some very low times in my life, perhaps the lowest. I know that I hit rock bottom seven years ago and that ever since, I’ve been trying to live my best life. I try to remember my life before that moment, before the fear and uncertainty and the diagnosis and though I remember bits and pieces, it’s like who I was before multiple sclerosis changed my life has been wiped away.

Since that moment, the journey I’ve been on has been one of incredible scope and in the process of picking up the pieces of me that had fallen to the ground, somehow, I found myself. I wrote about part of that journey in my memoir Little Yellow Magnet but it is a journey that still continues to this day. I’m constantly trying to find myself and find my footing on the path that I am on.

I realized that I’ve been carrying sadness for a long time. For years, there were a few dates that stuck with me and that I observed almost like they were holy days of some kind: December 30th , August 21st and May 13th. I was struck with a then unknown sickness on December 30th, 2012. On August 21st, 2013 I was diagnosed with multiple sclerosis. On May 13th, 2013, after suffering from a debilitating depression, I came very close to taking my life.

Every year since then, I’ve held on to those days, December 31st, August 21st and May 13th. They’ve been my trio of personal holy days to be observed and remembered. Gradually over time, I’ve been able to let go of them. I celebrate new year when December 31st comes around and though I recall what happened on that day in 2012, I celebrate the life I lead now. May is no longer my dark month as if once was before, filled with foreboding. I now think of it as the month that I decided to change my life, that I took back control of who I was and where I wanted to go. I let those days go, let what they meant to me and what they represented fall into the wind to have those emotions taken away.

If I hadn’t seen my Facebook memories, I would have forgotten what August 21st was to me again. However, just because my brain had forgotten, my body and spirit hadn’t. They remembered and the sadness that I’ve been feeling building up inside of me was a reaction to the day that was coming. On August 21st, 2020, it will be seven years since my diagnosis. It’s funny, on one hand seven years should feel like a long time, but to me it feels like yesterday.

That I can so easily delve into that pain leads me to believe that I haven’t let go of that pain as much as I thought I had. I was carrying sadness that had no source, nothing to cause it and I knew that it wasn’t the pandemic or the current problems of the world. The body remembers sadness and trauma, even if we don’t consciously do so.

I need to let go of this sadness. It no longer has any place in my life. Sure, there may very well be some new sadness or tears to be shed, but I don’t have to hold on to my past sadness anymore. I’ve grown so much, beyond what I ever thought possible. Why would I let my emotions hold me back? I have to let the old emotions go.

However, before I do so, I can’t forget what the emotions taught me. What the sadness meant when I was feeling it.

When my life hit rock bottom, when I was bed ridden for a month and a half, when I had to learn to walk and speak and type again, that sadness proved that I could still feel. Part of me wanted to give up, to let my life go from me so that I could walk into the darkness, to let the dark forest claim me.

I didn’t do that. I chose to live.

The sadness I carried with me was a reminder that I could feel, that I contained emotions and feelings. That I could be sad told me that I could be happy as well. For a while, it was important to honour the sadness every year on my holy trinity of days because it was an indication of how far I have come.

There is fear wrapped up in that sadness, too. For a long time, I was afraid of what the MS would take from me, that it would eat away at my life and what I had built, at what I perceived as worth saving. For a long time, I was so afraid of what would happen. Sadness was my constant companion and fear was my constant bedfellow. I was afraid of not being able to walk again, of losing the ability to talk, of my body rebelling against everything I had done to get better.

I remember that first year. On the night before New Years Eve day, I was so sure that I would wake up the next morning on the anniversary of the day that my life changed, and I would be right back to where I had been before. I sat there on December 30th, 2013 and I was so afraid and so sad that I was letting my fear take me over. When I woke on December 31st and I was okay, I was still able to talk and walk, I rejoiced.

Even so, for a while, I still felt fear every May 13th, August 21st and December 30th. Even though I’ve worked hard to better myself and have made new memories to fill my memory of those days, I supposed there is still a small part of me that remembers. How else could I be feeling sadness that had no cause?

I named the Cerebral Palsy I live with Cybil Paulsen and the Multiple Sclerosis I carry within me Max Shadow. I did this because I thought that if I wanted to understand my enemy, I had to give it a name so that I could know them intimately. I named them because I feared them. I fear them no longer. I am living my best life, a life I once thought impossible to achieve, because of the MS. It has taught me what be grateful for and what to cherish.

Normally, I wish Max Shadow a happy birthday with a soupcon of sarcasm thrown into it. However, now I will wish Max well and thank him for all he’s done. It’s because of him that I finally grew into the person I was meant to be all along. I have a gift for him this year, too. I will let go of the fear that I have been holding on to and the sadness that I have been wearing as a mantle even without knowing it. This year, I let all of that go.

So, Happy Birthday Max Shadow. Thank you for showing me who I could be.

Posted in Covid-19, Depression, Disability, Happy Birthday, Little Yellow Magnet, Memoir | Tagged , , , | Leave a comment

Walking the Walk for the Seventh Time

IMG_20200524_131319_433It’s hard to believe that this years MS Walk was my seventh time. It’s also hard to believe the times we are in.

When I did my first MS Walk back in 2014, it took me just under an hour to walk three kilometers. However, it was a walk of joy. There were thousands of other people walking with me and I was walking with my mother and my friends. I was one in amongst a crowd of others who either had MS or those who were walking for those that had MS.

This year, I walked with my Husband. Thanks to Covid-19, the MS Walk was a virtual affair. However, I decided that I really wanted to walk the five kilometers. I had raised money for the walk, over one thousand dollars, and I wanted to. We took a walk around our neighbourhood and I saw parts of it that I’ve never seen before. We got to walk under the gorgeous sun and enjoy the beautiful day.

We weren’t alone either. On our walk, we saw lots of other people out and about and enjoying the day. Everyone was in a good mood and we said hello to all of them. Even better, we ended up completing the five kilometer walk in just under an hour.

I can’t help but think of my first walk seven years ago in 2014. It took me just under an hour to walk three kilometers. This year, we walked five kilometers in just under an hour, beating last years record of an hour and ten minutes.IMG_20200524_131451_696

That first walk in 2014 almost didn’t happen. I nearly quit when we were right near the end and thanks to some motivation by the people I was walking with, I finished the walk. I’ve fought to grow stronger every year since then. Thankfully my progress shows.

Today, I was reminded why I bothered with doing the MS Walk every year: To prove to myself that I can and to do the walk for those that can’t. Every time I am able to complete the walk, especially at 5 kilometres, I celebrate because I remember a time I couldn’t even do three kilometers, let alone one. I remember the time where I could not walk at all.

I think that a part of me always remembers those two months where I was bedridden but thankfully, those memories have been given a softer focus over time. It’s not as horrible when I think of that time like it used to be. Now, looking back on that moment and the year and a half that it took me to speak and walk again, I am in awe that my journey has led me here.

Walking beside my husband today as the sun shone upon us, I was filled with a peace and a happiness that I never could have imagined when the Multiple Sclerosis hit almost eight years ago. I am constantly reminded of what it is that I have to be grateful for and what I have to be thankful for.

The MS has shown me this and it did so again today. Though I wasn’t walking with a large team of friends and family in amongst a crowd of thousands of people, I’m still walking all these years later and I am filled with so much happiness. That is a reason to celebrate.

Today, I am thankful.

 

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Stress and the Shadow Man

Shadow manI know that stress is one of the worst things for people with multiple sclerosis.

I’ve been experiencing a lot of it. It’s keeping me awake at night, so I’m having to take my prescribed sleeping pill more than usual. I’m having to watch how I speak because on the first try, my words are coming out garbled. I’m also living with a lot of pain for the past two weeks. I’m in pain every day to some regard, but nothing like it has been for the last few weeks.

However, I’ve been trying to counteract the stress that hides in the shadows. I’ve been trying to prepare myself for battle everyday against an enemy that I can’t see. Covid-19 fills up the news and social media. It’s everywhere and we can’t turn away. I know I can’t. I feel like I’m living in the middle of a very high stress reality television show.

Covid-19 has become so all consuming that it’s like I’m living with a third person in my marriage. He keeps to the shadows and yet, I can feel him running his fingers along my skin, making me question every cough, every ache, every scratchy throat. The Shadow Man has many powers, the most effective is the way he gets me to be my own worst enemy.

Living with multiple sclerosis, I already have a compromised immune system. I know that I’m at risk, but everyone is. Covid-19 doesn’t care who you are or what you live with. That doesn’t make it any easier.

I just need to focus on the positivity. I need to banish the Shadow Man with light. Yes, I am having difficulty walking and I’m in a lot more pain than usual, but that has to do with the stress. I feel like I’m wearing it like a hair shirt, unseen by mortal eyes but still just as real.

I need to remember that in order for a shadow to exist, there must be light coming from somewhere.

I know that the light is coming from me and I am doing this to myself, but it’s hard to find a balance between anxiety and wanting to be constantly informed. I can only do what I can. Use my light to shine and sparkle, help others through their own darkness, send love out there into the world. The Shadow Man of fear doesn’t like any of those things.

While the pain will always continue, I can manage the other symptoms. I can manage how I view this pandemic and what my place is within it. As I said in a previous blog post, fear won’t move mountains, but love will.

I can’t lose sight of that, for myself or other people. We don’t know how long this will go on for, but I plan to be as healthy as I can while we go through it. I plan to sparkle brightly and lead with love, for myself and other people.

It’s the only way I know to battle fear, stress and worry. It’s the only way I know how to battle myself.

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The Descent – A Video Excerpt

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Check this out!

In this video, I’m reading from my short story The Descent which is in the anthology Nothing Without Us. Click play and enjoy!

I had no idea that this video was even taken. What a lovely surprise! Now you can get a taste of the story and watch as I read an except from The Descent.

You can get your copy of Nothing Without Us here:

https://renaissance-107765.square.site/product/nothing-without-us/117?cp=true&sa=false&sbp=false&q=false&category_id=2

Awesome!

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Fear and Covid-19

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I can’t help but be afraid.

When the Covid-19 outbreak began, I thought it would all blow over, that it would somehow fizzle out. However, with each passing day, things just continued to get worse. With each passing day, my fear began to grow. It has gotten so loud that it is now a small voice in the back of my head constantly whispering to me.

It says: “You are already compromised. You already have a weakened immune system, you shouldn’t go outside, you should remain shut away,” and other such lovely phrases. I have to be careful every day but now even more so.

I do not do well with fear. I don’t like it at all and normally have no trouble pushing it away. I have always been strong and have had to do a lot of things for myself when no one else would do it, even if it caused me pain or discomfort. I always charge forward, always try to conquer. It is the only way I know how to do things.

With Covid-19, I can’t just conquer it. I can’t wipe it away.

All around me, well meaning friends and family have been afraid for my safety. Having multiple sclerosis means that I live with a compromised immune system and am therefore more susceptible to the disease. However, I’ve let myself become more susceptible to fear as well. I have hidden inside, afraid to go out and I feel like Rapunzel in her tower, looking down at the world around her.

There is a disassociation with the world has been taking place. I feel like we’re all driven apart from each other but we are trying to hold on so tightly to each other at the same time. We are being told to self-isolate, but we are human, we yearn for the company of others. I’ve been keeping myself safe inside, but try to go out for quick walks every day. I see people, but we only wave hello and separate from each other, our feet taking us in other directions and away to safety.

This dissociation has been taking place within me as well. It’s a separation from within. I yearn for human company, but at the same time fear it. I watch the news and with each speech by the Prime Minister, I feel myself pull gently away from everything, the voice of fear speaking to me, “You can never go outside again, you shouldn’t talk to others, you can live online now, the internet is your only friend, you can’t trust anyone, everyone has the virus…”

The world has become an unknowable place to me. People are hoarding food, toilet paper, sanitary supplies. People are losing their jobs and businesses. People are getting desperate. I have been trying to fill the world with kindness. It is the only thing I can think of doing. It helps keep the fear voice quiet.

I am also thankful I have creative outlets. I can write and paint. I have even started reading poems from my new poetry book on Instagram. I just want to counterbalance the darkness in the world with a bit of love and light, as much as I can put out there.

I know that people are afraid. I know that friends and family are worried, that the whole world is in disarray, but I can’t let that happen to me. I know that my super power during any negative situation is my stubbornness and my positivity. Both of these things have gotten me through situations that I didn’t think I would survive.

I’ve been trying very hard to walk away from the fear and the panic, the upset and the darkness. I need to walk away from the negative emotions within myself, knowing that they can’t possibly do me any good. I have come to realize this week that living with a little bit of fear isn’t necessarily a bad thing. It can keep me focused and keep me alert.

What I need to do is embrace positivity and love. I need to look at the small world around me while we are at home and know that it is full of abundance and joy because I made this home with my husband. It is not a prison; it is only my mind telling myself that. I need to embrace love and walk away from the feeling that life as I know it is over.

Yes, I live with cerebral palsy and multiple sclerosis. Yes, I have to be careful and keep an eye on my health during this time. Yes, I have to practice social distancing and keep myself away from others. That doesn’t mean I’m alone. That doesn’t mean I have to be afraid all the time or fear other people or myself.

Fear won’t move mountains. Love will.

 

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Looking for the Oracle

fca677c96021985529825f993890458827c80e13Before I was diagnosed with relapse and remitting Multiple Sclerosis, I thought I could cure myself.

Someone had said that it was all about mind over matter. I could choose not to be sick. I could choose my destiny and my way forward and I could cast the illness aside. I clung to that thought, the idea that I could cure myself. There were several problems with this, but I would only figure that out as time moved on.

When the illness was fresh, before the official diagnosis, I was in a terrible mental state. I had ceased to know who I really was anymore. I didn’t know where I ended and where the Multiple Sclerosis began. I tried to find answers to questions that I wasn’t able to articulate.

It began to take other things from me. It took my ability to walk and my balance. It filled my body with fatigue and nausea. I let it take my friends from me, shutting myself away until my only company were the trees that had sprouted from the shadows that filled my apartment.

The illness continued to worsen. I woke one morning to find my whole body had gone numb on my left side and I wasn’t able to speak. I had lost hearing in my left ear and had gone partially blind. The dark forest that took up residence inside of my head began to take up all the room it could, stretching itself so that its leaves filled my entire body. I was literally lost inside of myself.

Then I lost the ability to speak and to type. Without my words, without being able to use my gift, I was in complete disarray. The pieces of myself began to break apart and I could barely hold on to them all. I had to let some of them float away from me because they refused to remain still. My mother took me to the hospital right away.

At the hospital, I was lucky that there was a neurologist on staff. He took a look at me, at my lopsided face and listened to my slurred speech. He told me that it might be Multiple Sclerosis but they would have to run some tests. While they ran those tests, the forest grew by leaps and bounds. I could no longer see out of my windows.

Then the diagnosis came. After nearly a year of not knowing what was wrong with me, it finally had a name: Relapse and Remitting Multiple Sclerosis.

I was re-reading the Harry Potter series of books again at the time. I turn to that series when I’m sad or when I want joy or just want something good to read. There is a line that Dumbledore says near the end of Harry Potter and the Philosopher’s Stone. He says: “Fear of a name only increases fear of the thing itself.”

I thought: Now I know my illnesses name. Since I know the name, I can fight it. I don’t have to be afraid anymore. I was though. I was terrified. Multiple Sclerosis seemed too big a name, too large to keep inside of me. Being a writer, I thought it was only fitting that I give it a name as I would one of the characters I created, as I had the Cerebral Palsy that I was born with.

I had called the Cerebral Palsy Cybil Paulsen. Cybil was a reference to the book and movie from 1976 called Sybil where a woman called Sybil has a mental breakdown. So, I called the Multiple Sclerosis Max Shadow. It only seemed appropriate that he had the name of a spy, someone who could slide into my body and take things from me without me knowing. Someone who could hide within the shadows that my body carried.

I had thought that my illness having a name would be a shield against it, that the name of the nothing that I carried with me would give me power over it. I was wrong. In May of 2013, things reached the darkest point in my life so far. I didn’t know what to do, what I had done to deserve the diagnosis. Wasn’t having Cerebral Palsy enough? What kind of karmic retribution was this?

Unable to tolerate it anymore, I contemplated taking my life. I was sitting outside, a bottle of pills spilled into my hand and I was ready to live inside the forest and inside of myself. I have always lived with depression and it had never been this bad. I couldn’t hear anything above the whisper of the leaves from the dark forest that lived within me.

Thankfully, I had the sense to call my mother. She was the voice of reason that day and the light that shone through the dark canopy of leaves. She was the one who pulled me back so that I was outside of myself looking in at the foliage. I knew then that something had to change, that I had to take a different approach to what was going on within me. I had to choose a different path.

I turned towards my faith to find answers to the unknown. I’m Pagan and have always been drawn towards spiritual practices. I tried everything thing I could, if only so that I could ignore the whisper of leaves that wanted to pull me back within the shadows.

I took lessons on how to read tarot cards, I attended second level Reiki training, and I took workshops on essential oils and candle making. I read books on the tarot, on different spiritualties and filled my mind with as much knowledge as I could.  I was so desperate to find anything to give me the answers to my unasked question. If I had taken a moment to utter that question out loud, it would have been “What is the cure for my Multiple Sclerosis? How can I find a cure?”

In between going to workshops and classes, I was learning to do things for myself again. I had to learn to walk again with a cane and I trained myself to type again. I worked on my speech and this was easier once the numbness eventually faded away.

However, what I most wanted to do again was write. Before my MS, I was able to type out thousands of words in a weekend. Now I could manage only five words. I strung those together to make poems. Those poems helped me to fall in love with the craft of writing. I had to really think of what I wanted to say and how to say it.

I learned to do simple tasks again like cooking for myself, cleaning my apartment, changing the cat litter, taking out the garbage and taking a shower and considered it minor miracles when I was able to do so without falling. It was a relief to be able to do things for myself again. I remember the first time I rode the bus again without having to use my cane.  That was a joyous day and I felt I had conquered the flat mountain.

All the while, I was delving further and further into my spirit, knowing that the cure to my Multiple Sclerosis was close, I just had to read one more book, take one more workshop, learn one more spiritual craft. It was then that I stumbled upon manifestation. This workshop focused on manifesting the life that you wanted through a series of different techniques like mantras and tapping and rewiring your brain to think differently by welcoming in the good.

Let me tell you, I tapped myself until I was raw. I was so focused on trying to cure the MS that I couldn’t focus on what I had accomplished. Once again, it was my mother that opened my eyes. She told me that she was very proud of what I had done in such a short time. I asked her what the hell she was talking about. My mother told me that I had conquered my MS by learning to walk again, to take care of myself again and to soldier on despite an illness that would have kept many people down. She told me that my positive spirit was what had kept me going. When I asked her what she meant by that, she pointed out all the work that I was doing on myself, learning tarot and Reiki and manifestation. I had even met a man and had begun dating again, despite my fear of rejection.

I thought about what she had said for a long time. After a few hours of deep reflection, the leaves whispering lazily at me, it occurred to me that I had been doing all of these workshops in order to find a cure for the MS but what I had really found was a cure for myself. From then on, things changed for me. I began to view my life with MS and CP as a gift. That mindset continues to this day.  Also, that man I was dating became my husband.

When Renaissance Press put out the call for stories for Nothing Without Us, I knew that 590d5ec17e850dcbe3af4f6bf9648740_originalI wanted to write a story for it. They wanted stories with disabled protagonists or protagonists living with chronic illnesses. I fit both. It could be in any genre and so I chose fantasy. They wanted stories told in our own voices that made the person with the illness or disability the protagonist and not the sidekick.

The original idea was to write a story about a mighty knight who climbed to the top of a mountain and conquered a best that lay within. The parallel I was going for was the fact that for me even a sidewalk can sometimes feel like a mountain. I knew that I wanted the story to be magical in some way and really wanted it to sparkle.

What came out instead was The Descent. I wrote the story in two sittings. It’s about a wizard named Jefferson who goes on a voyage to find an oracle. He wants the oracle to help with one specific thing: cure his MS. He’s tried magic of every kind and, when that didn’t work, he tried killing himself and was saved by the love of another, in this case a man named Mikhail.

As Jefferson makes his way down a long flight of stairs, he travels with his MS named Max Shadow. They have a conversation as Jefferson makes his decent into darkness to find the oracle and by the end of the story, the two of them learn something about themselves and how they need to work together. Jefferson realizes that he is his own oracle, his own salvation and it’s up to him to accept Max Shadow instead of spending all of his magic fighting against himself. That the cure he was searching for was choosing to live.

I was astounded by the story. Essentially, it was myself on the page clear as day but given the smokescreen of fiction. It wasn’t the story I had wanted to write, but it’s the story that wanted to come out. I tried to write another story, but the words didn’t want to come. I read through the story and I didn’t like it at first. I didn’t think it was magical enough. However, I decided to submit it anyways, thinking that at the very least I could post it on my blog if the story wasn’t chosen. I figured it wouldn’t be because the story felt too raw to me, too personal.

Thankfully, I was wrong. The story was accepted and has garnered some really wonderful reviews. People have thanked me for writing a story that deals with a trope that happens a lot in fiction where the protagonist is able to magically cure what is wrong with them or a cure is provided.

I think that is the most important thing in the end. I went on my journey and realized that I could cure myself, but not in the way that I first thought possible. I changed the way that I thought about my Multiple Sclerosis so that I no longer viewed it as a death sentence. By choosing to live my best life, even because of the Multiple Sclerosis, I had found the cure.

I choose my destiny and it is full of sparkles.

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