The Lion and the Internal Orchestra

Your-Internal-SymphonyV2-300x225I’d like to take a moment to talk about pain.

Everyone experiences pain differently. Maybe it’s muscle pain or internal pain. Perhaps it’s a mixture of both. For myself, there is no rhyme and reason to it. My Multiple Sclerosis causes spasms and I have spastic Cerebral Palsy.

I view that pain I carry inside of me like a classical composition: the spasms down low in my legs are the bass, the tremors along the skin and the pain that rides along my shoulders are like the wind section. There are cellos and violins, those beautiful frantic voices, they run along my arms and my legs; the spasms like the change their movement without reason.

I am in pain all the time, but you wouldn’t know it to look at me. Inside of me, the orchestra is playing all the time, but on the outside, there is only the grace of the sun and the brightness of the day. On the outside, there is only my voice, which sings along with the orchestra.

I’ve had difficulty walking lately. My feet have been dragging a lot, particularly the right foot. Because its dragging, I am tripping a lot, but it’s all good. At least I’m walking. I’ve been experiencing brain fog and crushing fatigue on an almost daily basis. Trying to see out through the fog in order to make sense of the day. It may sound funny, but sometimes the orchestra inside of me keeps me going. The pain often pushes me forward.

Today, I was talking with someone I know, and he said “We shouldn’t be here. We should be out in the sun.”

“Don’t I know it.” I said.

“We just have to call in sick. Maybe with back pain. That’s the one thing they can’t check.”

I must have opened my eyes in shock. “I’m already in pain.”

“Yeah, but not much, right?”

“I’m in quite a lot of pain.” I said. “All the time.”

“Yeah, but not much, right?” He said again. “I mean, how much is a lot? It’s not like you can be in pain all the time.”

I said something non-committal and walked away.

Some people just don’t understand, they have no concept of what its like. I often talk of the two men within me, Cybil Paulsen and Max Shadow. I picture them playing the instruments, playing their hearts out only so they could be heard. But I’m the only one who can hear them

But then I got to thinking. Everyone’s pain is different. There is no way that I could truly describe to someone what I go through on a daily basis. This blog is my attempt to do so. Everyone with a visible of invisible disability lives their own journey. This is only my own.

Occasionally, the pain wears me down. Once every so often, the symptoms and the issues I deal with on a daily basis keep me down. However, I choose to look at things in a different way. I have had to be strong on so many levels throughout my life; I’ve had to take many steps towards the me that I am now and a lot of them were painful.

However, I made it.

Smaller lionNo matter the amount of pain I’m in, I still have a life to lead. I still have novels yet to be written. I’ve had quite the journey so far and I’m far from done yet. For myself, I needed a reminder of how strong I was, something I could look at when the pain became too much, something that would help keep me going.

In May, I got this tattoo. It’s my favourite card from The Wild Unknown, or any Tarot deck for that matter. It’s also a visual reminder of the strength that I carry within me, so that when it sometimes becomes too much, and I forget how strong I am, I have a visual reminder of my awesomeness.

In the end, the tattoo has become a talisman that I wear upon my skin. Somehow, it helps to quiet the internal orchestra sometimes.

Sometimes, all we need is the lion’s roar to remind us of how strong we are.

Advertisements
Posted in Brain Fog, Depression, discomfort, Muscles, Spasms | Tagged , , , , , , | Leave a comment

The Flower of Thankfulness

garden-minPeople are mystified when I tell them that I’m thankful I have Multiple Sclerosis.

It was a long road, though. When I was struck with MS on January 1st, 2013, I was bed ridden for a month and a half. I could barely walk and found it difficult just going to the living room couch. I had no balance, vertigo and nausea. My vision and hearing were affected as well; I went deaf in one ear and I was partially blind.

I couldn’t write. I used to be able to type out 25, 000 words in a weekend. Now I couldn’t write anything. The stories still wanted to be told, but there was no way to do that. This was the most painful thing to me, beyond all the things that I couldn’t do. I am a writer and words are how I truly live.

After six weeks, when I started trying to get better, I had to force myself to get out of bed every morning. I walked with a cane and was still partially blind. I still needed help with simple things like doing the dishes, taking out the garbage and groceries. Even bathing was a chore. I kept falling when I would try to lower myself into the tub.

I did not recognize my life anymore. I had no idea who I was, who this monster was inside of me that had taken control of my life. I was finally diagnosed with Multiple Sclerosis in April, after months of not knowing what was wrong with me. May should have been a month of sunshine and brightness, but I call May 2013 my dark month. I almost took my life.

I thought that I would be okay with having Multiple Sclerosis, having been born with Cerebral Palsy. What was a disease on top of a disability, right? Turns out, it was more than I could deal with at the time. I had spiraled into a deep depression and all I could see were shadows and darkness. I had cut all of my friends out of my life. I thought that no one deserved to be around me, that I didn’t deserve anyone.

They had prescribed pills to help with the spasms. I remember sitting on the bench outside of work on my break and the pill bottle was sitting there. I did the only thing I could think of and called my mother.

When I told her that I wanted to end it, that I was so tired, she told me something that will forever stick with me: “I didn’t raise a quitter. Don’t you quit on me.”

From that day forward, I fought. I clawed with tooth and nail. I would not succumb. I was stronger than this. So I set about learning to do what I used to be able to do, all over again. I remember the first time I took out the garbage all by myself. It took me thirty minutes to do it, but when I finally lifted up the trash can to the dumpster and back down again, without falling down, I experienced a moment of euphoria that is hard to describe.

I started to write again. I could only do a handful of words at a time and I was able to stitch those together to become poems. I started walking on my breaks at work. It was slow going at first, but every step helped. I began to change my diet, eating healthier foods and quit smoking. However, I was forgetting to heal my Spirit as well as my body.

So I began with Tarot classes, submerging myself in anything that called to my Spirit. I took manifestation workshops and followed that up with Reiki. Throughout all of the spiritual learning, I began to notice a change in myself.

It started off small at first, like a seed inside of me. That seed grew into a bud and then the bud began to flower. I started to love myself, all of myself, even the Multiple Sclerosis. This didn’t happen overnight-there were still many dark days and self-doubt was in plenty. But I resolved to love everything about myself, even if I didn’t like it very much.

When the flower inside of me was in full bloom, I started to look at the world in a different way. Every sunrise, every sunset was a gift. Every good book, every story, every wonderful meal. I began to notice things I hadn’t before or had just taken for granted: the stars at night, the sound of people talking and birdsong. The world was the same, but I was seeing it through different eyes.

I tried to put a name to this feeling inside of me, tried to find a way to put into words what I was experiencing and kept falling short, a frustrating thing for a writer. Finally, it occurred to me what the flower was called: Thankfulness.

It was such a foreign concept to me. I realised over time that I had taken everything for granted, had just accepted everything as it was and didn’t think any further than that. Sure, I was grateful for a lot of things in my life, but I had never been thankful. I just accepted everything as it was and thought it was due to me.

I am not the person I was before the Multiple Sclerosis hit. I look back at my past self and don’t recognize him. Had I known then what I know now, I would have told him to cherish every moment, every day and not to take anything for granted.

When I had to fight, to really dig down inside of myself, just to do every simple task, I learned how strong I was. When I overcame obstacles that had stood in my way, I learned about courage. When I was finally able to look back at everything I had been through and everything still to come, I was thankful.

 

Posted in Thankful | Tagged , , | Leave a comment

Walking the Walk

11165277_10155481987700702_3828023760695728609_n

Hey Everyone!

On April 29th, I will be waling the walk!

I will be walking in the Mandarin MS Walk in Ottawa. I will be doing 5KM and this will be my fifth year taking part in the walk. It’s such a wonderful day filled with friends and family and thousands of people all walking for a good cause.

The funds raised through the walk will go towards research that will find a cure. As someone living with Multiple Sclerosis, I hope they find a cure for the disease in my lifetime.

I’ve been asked why I do the MS Walk. Well, that’s a two-part answer.

When I first did the MS Walk, I did the 3KM. I walked to prove that I could do it. When I was first struck with MS, I was bedridden for more than a month. As I started getting better, I had to train myself to do what I had done without thinking before: taking a shower, walking, speaking, typing. Everything was a battle that I was only too willing to take on.

I had seen advertisements for the MS Walk and, on a whim, decided to join. I was immediately filled with fear. I didn’t know if I could walk 3KM, had only just started walking without the aid of my cane.

Thankfully, I was walking with a team of incredible people that helped inspire me and support me. They knew that I could do it, so I believed in myself. When I crossed the finish line, I felt that I had proven something to myself and that I was capable of more than I thought possible.

Now, as I take on my fifth MS Walk, I walk for those that can’t. There are so many others that are worse off than I am, that can’t walk or have difficulty doing so. I walk for everyone who suffers from MS and everyone who is affected by the disease.

I walk because I can.

This year, I’m trying to raise $1,000. The donations raised will go towards research that will find a cure that I hope will be in my lifetime. If you feel like donating, please do. Any amount helps! Or if you are in Ottawa and feel like walking with The Wolf Pack, come walk with me!

Learn more here:

http://mssoc.convio.net/site/TR/Walk/OntarioDivision?px=1945081&pg=personal&fr_id=5909

Thanks Everyone!

Sparkle on!

Posted in The MS Walk | Tagged , , | Leave a comment

Little Yellow Magnet Video Series: Depression

Hey Everyone!

Here’s the next video in my Little Yellow Magnet video series.

In this video, I talk about something I’ve struggled with for a long time and was made worse when the Multiple Sclerosis hit. In this video, I talk about depression.

Click play below and enjoy.

Posted in Depression, Little Yellow Magnet, Videos | Tagged , , | Leave a comment

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

Posted in Little Yellow Magnet, Video Series | Tagged , , , | Leave a comment

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!

Posted in Doctors, Neurologist Appointments, results, self esteem, Small Victories | Tagged | Leave a comment

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