I’m Alive For This Moment

PigeonsOn Wednesday last week, I had an appointment with my neurologist.

This is a joy for me. My doctor is a delight and makes going to the hospital a joy. She’s always upbeat and I feel as if I’m meeting with a friend rather than a doctor that is responsible for my health and care.

I gave her a copy of my new novel, Life and Lemonade, and she was overjoyed. She had read the first book (Lust and Lemonade) and was desperate to know what happened. We had a nice talk about what I was working on, how work was going, that kind of thing. Then she asked a question that I was dreading.

“So, are there any new developments?”

Normally I don’t fear that question as everything has been status quo for five years on Compxone. No new symptoms, nothing to report. Except for now.

“Well, I’ve been having a lot of insomnia…and I’ve been dragging my right foot.”

“Dragging how?”

“Every time I take a step. I’ve had to be really conscious of each step when I am walking.” I said. “I’m tripping a lot more, over things I should be able to step over.”

She ran her usual tests and then told me that I had lost some sensitivity to feeling in the right leg and that it was also a lot stiffer than normal. She asked how long this had been going on.

“A few months.”

She turned to my husband and asked what he had noticed. “When he gets really tired, he has difficulty walking.”

My neurologist scheduled me in for an MRI and brought up the possibility of switching medications. I had a moment of stillness at that. I haven’t had to have an MRI for almost three years, the last one I had showing that all my leisions had shrunk from the size of bright white moons and planets within my head to merely orbs the size of small stars or atoms.

So, it was about time for another MRI. I hate having them as I usually have to wear a face and neck cage that makes me feel like Hannibal Lecter; but it’s a good thing as it will give them an idea of what needs to be done.

The thing that gave me pause, that made me wish I hadn’t said anything, was the idea of new medication. I don’t have any side effects from the Copaxone. The other medications that are used to treat Multiple Sclerosis have a horrible list of side effects. If I have to switch to a new one, it will be like a temporary game of Russian Roulette until I find the one that works for me. The new medication might affect my ability to work, how I feel on a daily basis and seriously effect my life.

She prescribed a new medication for my insomnia. I voiced my concerns and then said “I used to be able to know that when I was in pain or having difficulty walking that it was my spastic Cerebral Palsy. Now, with the Multiple Sclerosis being spastic as well, I have no idea which one is causing it.”

I gave my neurologist a hug as I left with my husband. I knew that she was only concerned with my health and that she was doing what was right and what was good. I left with a small kernel of worry inside me, though. I didn’t like the idea of trying a new medication, should that be a possibility.

It had taken me so long to get where I was, to fight the Multiple Sclerosis into the shape that it now holds within my body. I had changed my diet, I had quit smoking, I had adapted to taking medication three times a day. I had started working out three times a week, taken on a swimming regime two to three times a week. I had been able to stop walking with my cane. I had done all this to make myself better. I had literally turned my life upside down, shaken things around and turned it right side up again.

The possibility of even more change frightened me; that a change in medication could mean missed work or possibly not working at all, some of the medications side effects are that bad. That the medication could wipe away everything I’ve done and everything I’ve been doing to make myself better, to truly live my life, was a frightening prospect.

I talked about this with my husband Michael and he said “Whatever happens, we’re in this together. You won’t be alone.”

That brought some comfort, quite a lot, actually. My husband is awesome.

On Thursday, I was walking home from an appointment after work and gave myself a really good internal talk. “I’m freaking out for nothing. I haven’t even had the MRI yet. I’ve conquered demons, climbed mountains, explored vast seas to find myself. I’m okay. I’m going to be okay.”

I took a deep breath.

“I’m alive for this moment.” I said out loud.

I walked along a path in Confederation Park where there was a man doing street performing. He was moving as if he was a robot and tipped his invisible hat in my direction.

“I’m alive for this moment.” I said again.

I walked by the fountain in the centre and saw a child throwing a penny into the water, given to him by his mother. The child cried out with joy.

I’m alive for this moment.” I said once more.

I watched as an entire flock of pigeons took flight, perhaps a hundred of them. They flew right by me and I felt the worry that I had been carrying within me, the angst and the despair over another life change, dissipate. The pigeons flew right by me and I watched them fly into the sky and far away.

I was as if they took all of the worry away, had hoisted it from me upon their wings and set it free into the air.

I am alive for this moment, then the next one, and then the one after that. Life is but a series of moment, fastened together into a narrative, into a story. I had a choice. I could choose how my story went.

So, I’m going to face whatever comes, whatever other changes if there any that come my way. I will face them head on and then figure out what to do. I have to remember that I am not alone, that I am not on an island and that I am alive.

I am alive for this moment and every moment after.

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Posted in Depression, Doctors, Falling, Fatique, Insomnia, MRI's, Symptoms | Tagged , , , , | 1 Comment

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.

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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.

 

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Walking the Walk

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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!

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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.

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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!

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