Little Yellow Magnet – The Video Series

Hey everyone!

I finished a memoir about my trials and tribulations with Multiple Sclerosis in November of 2017. I recently had it edited and hope to eventually find a publisher.

In the meantime, I felt compelled to do a short video series on subjects that I dealt with. These will include fear, depression, suicide, bravery vs courage, and finding joy in the small things. That’s just a beginning. I hope to do one video a week.

So, click play below to watch the introduction to the series of videos. I’m giving the videos the same name as the memoir I have written: Little Yellow Magnet.

Let me know what you think in the comments below and stay tuned to my YouTube channel https://www.youtube.com/user/JamiesonWolf

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Sparkle On!

downloadI had my neurologist appointment last week.

After a quick catch up on how I was doing and how my symptoms were my neurologist took me through all the regular physical tests: touching my hands and my feet with a pin to test sensitivity, using a tuning fork to along my legs and feet to test the same thing. She took me through the eye test and I read the second last line from across the room. She tested my legs and their reaction by tapping the knees with a small hammer.

Normally, she made me walk across the room barefoot and toe to toe. As I had mastered this during my last appointment (doing ten steps heel to toe!) she skipped this exercise. Then she gave me a huge smile. “I really don’t know why you’re here.” She held her hands out. “You’re doing so well!”

“Thank you.”

“What are you doing again for your exercises?”

“I work out on Monday, Wednesday and Friday and swim on Tuesday, Thursday and Saturday or Sunday.”

“So disciplined!” She said with another smile.

“I just like to stay mobile.”

“It’s working! It also helps that you’re so positive. You are the poster boy for positivity.” She said.

“I just don’t know any other way to be.”

“But along with everything you are doing, the positivity is a great help. You aren’t letting yourself get down on yourself.”

I shrugged. “I look at every day as a gift, as something to be thankful for. It’s all about the sparkle.”

“I actually owe you a debt of thanks.”

“Why?” I looked at my husband, wondering what she could have to thank me for.

“Something you said during your last appointment. You said ‘I’m gay, I have Cerebral Palsy and Multiple Sclerosis. But I still sparkle’” She let out a laugh. “It’s become my mantra. No matter how bad life gets, we can still sparkle.”

I was very touched and told her so.

“Oh, it’s not just me. The other nurses and doctors have taken it to heart as well. It brightens their spirit when someone tells them to sparkle on.” Her face brightened. “OH, I’ve just had an idea! Let’s go do a sparkle flash mob! Come with me!”

With a smile on our faces, my husband Michael and I chased after her down the hallway. She got to the office where the other doctors and nurses were and threw open the door. They all turned and saw me.

“Get ready folks!”

“What’s going on?” One doctor said.

My neurologist looked at me. “Do it!”

I snapped my fingers above my head and said “Sparkle on!”

The elation in the staff room was instant. The other nurses and doctors were overjoyed. One of them told me that when they saw my name on the roster that it put them in a good mood. Another told me that she thinks of me every time she sees rainbows or unicorns.

I gave my neurologist a big hug before I left. As my husband and I were leaving I said to him: “If this is part of the legacy that I leave behind, I’m totally cool with that.”

Sparkle on!

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Today Is A New Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Invisible Sign

DreamBigFrontFixed

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

“Good. Going to catch a bus.”

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

“I do. I’m disabled.”

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

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

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

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

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

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

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

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

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

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

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Spooning with Spoonies at Can-Con 2017

Spoonie photo

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

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

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

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

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

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

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

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

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

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

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

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

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

113 Steps

539893_484145031601515_1621960854_n-111When I started my exercise regime, Sarah Zahib of Continuum Fitness asked me what one of my fitness goals was.

I thought about it for a moment. “I’m always asked to do this thing for my neurologist where I have to walk heel to toe across the room. I’d really like to be able to do that one day.”

“You will. I’ll help get you there.”

I started working out in 2014. The first time I did that exercise for my neurologist, I couldn’t even manage one step. There was no way that I could get my body to do what I wanted it to. In 2015, I managed one step heel to toe; in 2016, I managed three steps, but both of those times, the neurologist helped me to balance. I could not do it alone.

It’s incredibly frustrating. How could something so simple such as walking heel to toe across a room be so difficult? I could do it without thinking as a child, walking as if I was balanced on a tightrope. I could do a lot of things without thinking about them before.

Yesterday, I saw my neurologist for my six month appointment. She had a resident doctor take me through the normal tests they do to check dexterity, balance and strength. After everything, she asked me to walk heel to toe for as long as I could.

I had both been dreading this and looking forward to it. I’ve been practicing, seeing how many steps I can do before I lose my balance. It’s different doing it in a hospital, however. After all the exercises, my body is rather numb and springy all at once.

Taking a deep breath, I stepped out with my right foot and then managed to put my left foot in front of my right, so that the toe was touching the heel. I stepped again, willing my legs to do what I needed them to do. For the first time, no one held on to my hands. I was doing this completely on my own.

I took a third step, another deep breath, and a fourth step, my arms out to my side slightly. I wondered if I would be able to fly if I tried to. I took a fifth step, a smile across my face.

“Okay, that’s fine now.” She said.

I took a sixth step, just because I could. When I looked up instead of down at my feet, I had actually made it across the room. Now, granted, it was a small room but regardless, I had finally done it. I had walked across the room heal to toe. Even though I had walked across a floor, it was as if I had climbed a mountain.

This afternoon, I had the opportunity to go and see Kontinuum, a light and music and interactive art exhibit. I had been wanting to see it forever. Looking at my ticket, I saw that, in total, it would take 107 steps to get to where the exhibit actually took place, deep underneath the city.

I immediately thought about not going.

I sat there and thought of every conceivable reason why I shouldn’t go. Then I thought of walking those six steps, I could tackle one hundred and seven. I was fine until we approached them and looked around for the elevator, hoping to take in downstairs. There wasn’t one that I could see.

It was either go down the stairs or go home. I chose to go downward. I took my time, taking it one step at a time, the music playing around me, lights flashing above me. I counted each step that I took, making sure to keep track. One, two, three, four…

I was reminded of the movie Dancer in the Dark with Bjork and her song 107 Steps from the movie. I thought of what was waiting for her at the end of those steps and how terrified she was to put one foot in front of the other. I pushed aside my fear and continued downward, ever hopeful.

As I went further below ground, it was as if I was entering another world, so beautiful was the world around me. I walked down one stairwell that was made to resemble the throat of an enormous beast. I wondered what we would find when we finally arrived.

When we finally reached the bottom, I took a moment to look back at where I had come from. I had never climbed so many steps going down, not since I had gotten Multiple Sclerosis. My legs felt like jelly, but I decided to keep going. Kontinuum was all about transformations and the frequency that you put out into the world.

I had left my fear behind at the top of the stairs and found myself changed slightly at the bottom. I was no longer so afraid of putting one foot in front of the other and all it had taken was 113 steps.

 

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I Got This

I-got-this-greenThe other day, when I was talking to someone, I mentioned how meditation was really helping me deal with my Cerebral Palsy and Multiple Sclerosis. She looked at me, her mouth drawn into a frown of sympathy, and said “Oh, honey! Poor you!”

I went through a multitude of responses in my head, wanting to say something in response, when my spirit responded for me. “No no, it’s all good.”

“It is?” She said.

“Yes, I got this.”

I’ve been reflecting on this conversation for a couple days now. The truth is, a few years ago, I would have agreed with her. I would have said “Yes, poor unfortunate me.” I would have welcomed her pity and sympathetic glances. I would have given in to a pity part and bemoaned how my life had turned out so horribly.

I was that way for six months. I was mired in a forest of self-pity, the trees growing around me dark and filled with shadows. However, I missed the light that had been in my life, I missed joy. I decided to go on a journey to find them, to welcome them into my life again.

Along the way, while I leaned once more to do the things that I had taken for granted, I learned about what courage was. I learned about perseverance. I learned to look fear in the eyes and not be afraid of the life I was living now, to take my life in my hands and take back control.

It wasn’t an easy journey, but every step that I took towards my light was a step to reclaiming my life. I realized that there was no room in my mind for self-pity if I was going to get better. Self-pity and self-loathing would have landed me mired in the dark forest and I would never have ventured out of it again.

Instead, I looked at everything as a gift. Being able to do the things I had taken for granted was a gift: being able to iron my clothes, change the cat litter, dress myself, read a book, take a shower, ride the bus, write anything. All of those things which I had done without thought were now gifts to me because I could do them again.

Other things became gifts and instances of light. From the birds I saw, flying through the air on their own journey, to the sun shining on my face giving me warmth, to reading a great novel, writing a story of my own. Things that had been around me for my whole life, but had held no meaning, now gave to me their joy so that I could find my own.

After some time, the way I thought about the Multiple Sclerosis changed. Gradually, it became a light of its own, showing me what I truly had to be grateful for, what I had to cherish, what mattered most to me. It became a gift in its own way, showing me what to be thankful for. That, though every challenge and obstacle I had to overcome, there was joy. There was light, even in the darkest moments.

That’s not to say that my life has been without challenges. I am in pain of some sort every day. This morning as I write this, my leg muscles had become like stone, making it feel as if I’m walking on stilts. Other days, my back muscles may spasm or my shoulders. It’s not picky, my whole body is a buffet. I still have brain fog where my memory and my brain aren’t working to well, I still have difficulty speaking sometimes, I still deal with sometimes crushing fatigue.

But that’s okay, too. More than okay.

Even with the issues that Multiple Sclerosis and Cerebral Palsy bring, I am reminded every day I am alive, that I am still going, still fighting. More than anything, I am still grateful and I am still thankful for the life I have.

So, when I told the woman “It’s all good, I got this”, this is what I was trying to convey in a small handful of words.

Every time that the MS and CP have me down or I’m having a rough day, that’s what goes through my head. That’s what I say to myself each and every time I am having a bad day.

I got this and life is awesome.

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