Please Help Save the MS Clinic!

Posted on April 30, 2019 by Jamieson Wolf

MS Clinich tweetI learned something distressing before the MS Walk began this year.

The MS Clinic at the General Hospital could close in five days due to lack of funding.

This can’t be allowed to happen.

I can stress how amazing the MS Clinic has been to me since I was diagnosed with Relapse and Remitting Multiple Sclerosis six years ago.

When I first started seeing them, I could barely walk and was doing so with the aid of a cane. I was weak and tired all the time and had no energy and lived with vertigo and nausea, bladder problems, difficulty speaking and shaping words, bone crushing fatigue along with a healthy dose of brain fog. I didn’t know where I ended and the MS began. To say that I was lost is an understatement.

The Ottawa MS Clinic changed all that.

I remember my first visit with a neurologist. He was kind and gentle as he took me through a series of exercises that would set a baseline to measure my progress against. The entire time, he didn’t look at me like I was something to be frightened of. He actually listened to me and treated me with respect.

What’s more: he heard me.

He listened to me and everything that I have been through. He paid attention to my experiences with MS and then he told me that with care, we could learn to fight against the disease that raged inside my body.

This was the first time seeing a doctor that I was actually heard, that I was treated as if I knew what was wrong with my own body. I have been going to the Ottawa MS Clinic for six years now. The care I receive has only improved.

I am overjoyed every time I get to go in and see my current neurologist. I love her that much. Seeing her is a joy and a privilege. It’s as if I’m going in to meet a cherished friend every six months…because that’s exactly what I’m doing.

My neurologist has been with me through the highs and the lows of living with my disease. She has been a guiding force in how well I’m doing today.

Case in point, when I walked the MS Walk last year, it took me an hour and a half; this year I did it in an hour and ten minutes. I am stronger because of the clinics care and it can’t be allowed to close.

It’s not only me though. There are 3,500 patients (myself included) that receive the care and help they need from the Ottawa MS Clinic. If it closes, the closest MS Clinics are in Toronto and Kingston and there is an eighteen month wait to see a neurologist.

I would not get the kind of care that I do now if I had to travel to Toronto and Kingston. They wouldn’t know me and I would become just one in many, reduced from being a person with a heart and mind to just one amongst a crowd.

The Ottawa MS Clinic is looking at closure due to cuts in budgets and staffing made by the Ontario PC Government, led by Doug Ford. This cannot be allowed to happen. Too many people depended on it for the care that they give.

I, and the 3,499 other patrons of the Ottawa MS Clinic, need your help

There are a few things you can do.

There is a petition that you can sign and share to your social media to make sure that other see it and sign it. You can find that petition here:

https://www.change.org/p/jack-kitts-save-the-ottawa-ms-clinic?recruiter=false&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=share_petition&recruited_by_id=ba5da9e0-6a71-11e9-bcd2-d15e26028b0a&utm_content=fht-15196736-en-ca%3Av2

You can also email the people that hold the Ottawa MS Clinic in their hands:

President and CEO of Ottawa hospital at jbkitts@toh.ca

Chief of Staff of the Ottawa Hospital at vroth@toh.ca

President and CEO of the Ottawa Hospital Foundation at tkuke@toh.ca

Minister of Health at christine.elliot@pc.ola.org

You can also tweet your MP and your MPP like I did (see picture). In short, we all have a voice. It’s time we used it and spoke loudly and clearly so that we don’t lose the vital services that the Ottawa MS Clinic provides.

This really is about quality of life. Use your voice, speak up.

Please.

Posted in MRI's, Neurologist Appointments, self esteem, The Ottawa MS Clinic | Tagged , , | Leave a comment

We Are All Rock Stars!

Posted on April 29, 2019 by Jamieson Wolf

The Wolf PackI did my sixth MS Walk on Sunday April 28th. I walked 5KM with my team The Wolf Pack in an hour and ten minutes! That beats last years mark at an hour and twenty minutes! Holy crap, I’m a rock star! I couldn’t have done it without my team. I am more grateful to them than I can say.

Together, we raised $2,325 that went towards research to help find a cure for Multiple Sclerosis. I am so proud of my team. We are all rock stars.

To think that the first time I did the MS Walk, doing 3KM took me an hour. Now I did 5KM in a little over an hour. That Is just awesome.

I can’t wait to do the walk again next year!

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The Fractured Mirror

Posted on April 8, 2019 by Jamieson Wolf

Small mirrorYesterday, while I was enjoying a hibiscus tea and a salad at the local mall for lunch, I began to have problems with my eye sight.

I started to see semi-opaque white dots appear around my field of vision in both eyes. I took off my glasses and cleaned them and put my glasses back on; the dots were still there. They began to flash as they moved across my field of vision and I was unsure of what was happening, of what was going on.

I remember thinking “Shit, my eyes have never done this before” before the blurriness kicked in. I could hear a child laughing and looked up to see the hazy form of a girl sitting close to me, turned around in her chair. I could hear her laughter and knew she must be smiling because of it, but I could not see her face. I will always remember her and the face I did not see.

I decided to go, that I had to get my coat and go home. I stood and as I did so, my vision changed again. It was as if my eyes had become funhouse mirrors. My eyes work independently of one another and each eye had its own mirror to look through.

Things were blurry but also distorted. The people I could see walking in front of me were cut into pieces, their bodies arriving in my vision sooner than their faces. Other details were blurry, as if my eyes were experiencing sensory overload and had just started to shut down and, amidst all of this, those slightly opaque white orbs.

I’m still not sure how I made it to the second floor. Everywhere I looked, it was as if the mirrors within my eyes had become even more fractured, as if the glass holding the silver had broken. I took my steps carefully and I moved slowly, wondering if anyone around me could sense that something was off about me.

I had a brief notion of going outside for a breath of fresh air and moving on to a different mall, but I had no idea how long this would last or if this would in fact become permanent. I did the only thing that made sense: I sat down and called my husband. He told me to call my parents while he drove back from Kingston. I called my parents and sat where I was to wait for them to pick me up.

I was going to text my husband, but I couldn’t see the words and couldn’t type on the small keyboard of my phone, so I called him instead, pressing my finger to his picture and then hitting the option for mobile. I did the same for when I called my Mom.

While I waited, I meditated on the inside. I tried to remain calm and centered. I can deal with the big things that life throws at me, but I have trouble with the little things. This was obviously one of the big things, something I didn’t have any control over. I sat and tried to look at my Kindle. I could see a cloud of words in front of me but couldn’t focus on the words I wanted to read within that cloud. The same thing had happened when trying to call them before. I just sat there and looked down and tried to remain calm.

By the time my mom had arrived, it had been about an hour and a bit. My eyes gradually cleared, bit by bit. The semi-opaque dots were gone and the fractured look had lessened, leaving me only with slightly blurry vision.

My parents took me to the hospital where my mom explained my medical history to the emergency care nurse. We were triaged in and then began the waiting. Gradually, my eyes became clearer so that I could see without too much blurriness. By the time my husband arrived, they were at almost full sight.

My parents left and my husband and I waited some more. I was visited by two nurses that took measurements and tested my eyes and gathered info for the doctor. When he finally came in, he could tell me…nothing.

He said that if I had had the white spots in only one eye, that that would signify something concerning multiple sclerosis. As it was, the only thing to do was to go home and to go in if it happened again.

Not the best medical advice I had ever received, but not as bad as it could have been. After nearly six hours at the hospital, I was allowed to go home. Today, that ten percent of my vision that had been missing gradually got better. The blurriness went away and now I’m seeing at 100% again. I’m not entirely sure what happened but will remain alert if anything changes. I have an appointment with my neurologist on the 17th of April so we will see what she says.

In the meantime, I will just sparkle on!

 

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Little Yellow Magnet – Available Now!

Posted on March 6, 2019 by Jamieson Wolf

little-yellow-magnet (1)I’m thrilled to announce that Little Yellow Magnet is AVAILABLE NOW! Isn’t that amazing?

Here’s a bit about the book:

Life can change in an instant. Jamieson learns this the hard way.

 

Waking one morning to find he has little-to-no motor control, Jamieson only wants the world to return to how it had been before. After a diagnosis of Multiple Sclerosis, he thinks his life is over. What he doesn’t know is that it’s only just begun.

 

Trying to navigate through the world in a body he no longer understands, Jamieson must travel through the dark forest of depression while waging a constant battle against himself. Over time, he learns what he’s truly capable of, and what it actually means to be courageous.

 

Follow Jamieson as he loses himself…then discovers who he is really meant to be.

You can find Little Yellow Magnet here:

Paperback (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834431&sr=8-1-fkmrnull

Kindle (Canada): https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+Magnet+jamieson+wolf&qid=1551834431&s=gateway&sr=8-1-fkmrnull

Paperback (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf/dp/192810116X/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1551834500&sr=8-1-fkmrnull

Kindle (US): https://www.amazon.com/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=sr_1_fkmrnull_1?keywords=Little+Yellow+magnet+JAmieson+Wolf&qid=1551834500&s=gateway&sr=8-1-fkmrnull

Kobo: https://www.kobo.com/ca/en/ebook/little-yellow-magnet?fbclid=IwAR1slQgPiaZ5aVucJDH-4tPH4KGOHOZwcbkevj5_zSSy3qRwM61fty55ykw

I’m thrilled to be able to share this book with all of you. Stay tuned for more details of upcoming events!

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Little Yellow Magnet – It’s Almost Here!

Posted on February 25, 2019 by Jamieson Wolf

Ilittle-yellow-magnet (1)t goes without saying that Little Yellow Magnet was a difficult book to write. It was also the most rewarding.

When I first started writing it, I called Little Yellow Magnet my little book of positivity. The idea behind it at first was to write about the positive moments during my journey with multiple sclerosis. The only problem was, I only got to page twenty-seven before I realized I was going about it all wrong.

From the moment I woke on January 31st, 2012 with my body no longer my own to the moment I had the idea to start writing about it; well that was all part of my journey. To focus on only the positive elements of that journey would be doing myself a disservice.

Every step along my path, every moment until now was all part of my journey. I couldn’t just write about the part of it that left me elated. I had to write about everything. This filled me with some trepidation.

Like every writer, I put myself into everything I write. Certain characters are based off of me or events that happened in my life are used in my books. However, that is all done with the smoke screen of fiction. I’m a bit more open when I write poetry, trying to make sense of something, but there is always some sort of poetic licence there.

With a memoir, it would be me on the page with no smokescreen, no great giant head of OZ to hide behind. It would be me, completely and in truth. That was clear to me. If I was going to write this, if I was going to go down the road that I have travelled, there would be no sugar coating of anything.

I took a moment to pause before I put my fingers to the keyboard again. My journey deals with a lot of other issues other than my diagnosis of multiple sclerosis. It talks about already living with cerebral palsy, mental abuse, depression, suicide attempts, dating in the gay community while also having a disability.

I had good long think about whether writing it would be a good idea. I came to the conclusion that, at the very least, it would be a cathartic release for me, a closing off of one chapter and the beginning of a new one. Then, if I did decide to publish it, my hope was that it would help people. There are so many others that are dealing with so many things I’ve touched on in Little Yellow Magnet: dramatic changes, disease, depression, abuse. If the book helps even one person, than that makes everything worth it.

Ultimately, the book is about what it took for me to surmount all my challenges and choose to live. Make no mistake, despite the subject matter, Little Yellow Magnet is about what it took for me to try and live a better life by honouring the life I had, no matter what it involved.

I learned a lot about myself through the writing of Little Yellow Magnet. Having my journey laid out on paper, it was impossible not to. I can’t wait for you all to read it yourselves. It seems amazing that the memoir is almost a reality and that other people will be able to read it.

It’s not that long away now. I can’t believe that, after a year of writing and a year of exits and preparation, that Little Yellow Magnet is almost here. It’s available on March 21st, 2019.

Thanks for being part of the journey.

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From This Moment

Posted on February 4, 2019 by Jamieson Wolf

50606664_10161192891465702_2530850710854041600_n

I had my follow up appointment with my neurologist last week.

We wen through the normal tests that we do, chatting up a storm, catching up on everything that is going on in my life, the trips my husband and I have been on, etc. While it was lovely to see my doctor again, at the back of my head was the niggling worry. I wasn’t sure that I would want to hear what she would have to say.

Eventually, she opened up the photos of my last MRI and my new MRI and put them side by side. There were three new lesions. They were small, like three white islands in a sky of grey clouds. Looking at them, my stomach dropped a little. She explained that the lesions may have been there before, that the MRI technology was a lot better than three years ago when I last had one.

I heard her but her words hit a barrier of numbness. I went through the motions and nodded in all the right places. She explained about a new medication and that it was a pill, so I wouldn’t have to take a daily injection; that the pill wouldn’t just prevent relapses, it would also stop the progression of the multiple sclerosis.

I took a day off work the next day and had bloodwork done in preparation for the new medication. I was still kind of numb. As much as I knew that this new medication was probably a positive thing, it was also angry.

I was angry at my body. I was angry at myself, at the world, at everything and everyone. As the nurse inserted the needle, I imagined that the blood she was taking from me also took my anger from me, that it was a cleansing of sorts. I was numb, I was saddened and I was so angry.

I’ve changed my diet three times, I’ve quit smoking. I’ve kept up an exercise routine, three times a week since 2014. I even swim two to three times a week and go for two 1.5KM walks a day, all in the effort to keep and stay mobile.

I’ve done everything I can think of to beat the MS. I even look at it as a gift in a way. I am thankful for it as it taught me what really matters in life. I’m grateful for what the MS has shown me about myself and what I am truly capable of.

I had done everything…and still, it tried to best me.

So, yes, I was angry. I looked at those three small island on that MRI x-ray and pictured them melting into the clouds.

I posted to Facebook about what had happened and what was going on. Everyone’s comments made me cry; they helped me to realize that I wasn’t alone in this, that there was an ocean of people in my life that cared for me. Almost every one of them told me the same thing: sparkle on.

That’s become my motto, of sorts. It’s part of my positive way of thinking. I picture the world full of sparkles and if there isn’t any, I spread them around. I had forgotten in this moment to give myself some sparkle.

I realized that, though I was angry and numb, I was also afraid. I am afraid of the disease that I carry within me and what it could do to me, should I let it, but that’s okay. From fear comes courage and I’m full to the brim with courage.

I have been living my life since 2014 by doing things one day at a time. I’ve come to realize I’ve been doing it wrong. It’s not every day that counts, but every moment. Every day is filled with an ocean of moments, and I have but to cherish all of them.

Mostly, through all of this, I had forgotten my super power: my ability to sparkle brightly, no matter what was happening in my life.

On that day when I had the bloodwork done, I didn’t sit back down at the computer. I tried to heal myself in a different way. I went to my easel instead. I painted for the first time in over a year and it just came out of me. I called it Spirit Fire. I think it’s very telling that I painted fire first, almost as if I wanted to burn away the sadness that I was carrying within me.

More than that, it’s the fire of my spirit and it burns as brightly as I do. I will survive this as I always have. I will burn brightly and sparkle from this moment and the next.

I will burn brightly.

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A Hard Way To Learn a Lesson

Posted on November 16, 2018 by Jamieson Wolf

I’m never counting steps again. Here’s why:

On the way home, my bus broke down due to all of the snow that has been falling today. The driver didn’t know when another bus would come but he gave an hour to an hour and a half estimate. I’ve walked home from where the bus broke down before, but usually in Spring, Summer or Fall. Well, I said to myself, it’s all good! I can still do it! And! I can get my steps in!

I went to get off the bus and promptly lost my balance in a very large snowbank. I tried to get up and couldn’t. A woman behind me on the bus said “Are you okay?” Instead of saying “No, I’m not okay, I’m being an idiot trying to walk in the snow!” I said “I’m fine!”

Then I promptly lost my balance again. I couldn’t get up. The woman got out of the bus and pulled me up out of the snowbank. “Thank you very much.” I told her. She told me to be safe.

I walked onward. Well, let me tell you something: walking a route in Spring, Summer or Fall is a lot different then walking it in the Winter. It seemed to take forever and my legs started to spasm part way through the walk.

Now, if I’m anything (sparkly, fabulous, awesome are good suggestions), I’m stubborn. So, I told myself “I’m almost home, I’m almost home. Just a little bit further.” I had no other choice really. My husband was in meetings and I didn’t want to call a cab for such a short distance.

I made it home and my legs and body are in agony. I looked at my phone, as one does, to see how many steps I’d done, and it was almost 10,000. I had also walked 2.96 KM’s in 35 minutes. In comparison, five years ago in my first MS Walk, it had taken me just shy of an hour to walk 3KM and that was in Spring conditions without snow and ice on the ground.

While I’m proud of myself (I couldn’t have done that five years ago when I was diagnosed with my MS), I’m mad at myself. What I should have done was wait for a new bus to arrive, no matter how long it took. I was warm, I had my Kindle.

While it’s really cool that I walked almost 3 KM and almost 10,000 steps, was it worth it? What did I prove to myself, aside from the fact that I’m stubborn? In the end, it doesn’t matter how many steps I do during a day. It’s enough that I’m walking at all. I need to remember that and start being kinder to myself.  It was a hard way to learn a lesson.

Also, to the lady that helped me up when I had fallen in the snowbank, thank you for proving that kindness really does exist.

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Stepping Out of the Box and Breaking the Routine

Posted on November 4, 2018 by Jamieson Wolf

stepping_out_of_the_box_by_mistre_khalid-d7wrj4eI’ve been struggling a lot lately. I’ve been trying to break out of the box that I’ve put myself in. That box is built on routine.

When I was first diagnosed with multiple sclerosis, this routine helped. It helped me to remember to take my medication, to not forget to take my injection every day. I took my pills at the same time every day and took my needle at the same time, every day. At first, this routine was comforting. I knew that, by following the routine, I was keeping myself healthy.

Now, the routine is putting me in a box and I want out desperately. I want to break free, but it’s not as simple as that.

I get so frantic if this routine if thrown off in any way. There are different parts to my routine: writing, swimming, working out, reading, how I get to and from work, what I eat, when my husband gets home, how I fill my evenings.

If my routine is thrown off, it destroys my day. I’m not obsessive compulsive by any means, but I’ve grown to be very anal retentive. Things have to be just so. The routine that started with my medication has taken over my life.

I need to get home at a certain time, need to be ironing my clothes by a certain time, all so that I have time to write. Part of me believes that I need to write as much as possible, do as much as possible, before it’s too late.

I have relapse and remitting multiple sclerosis. Before I was first diagnosed, I was bed ridden for a month and a half. There is a fear in the back of my head that the MS may do this to me again and that, in the meantime, I have to do as much as I can.

In my mind, I need to workout, write, cook, swim, write and write some more before it’s too late, before the MS hits me hard again and I have to learn to do everything all over again. There is always that fear, that worry, that I will have my life taken from me once more. There is the constant need to truly be alive, to be living, to prove to myself that I am alive

On top of that fear, there is the routine that at first helped me, comforted me and gave me the boundaries I needed so very much. It is the routine that set me on the path I’m on now but now, the boundary is constricting.

I have to step out of the box and walk off the path. I don’t mean in any drastic way, I am going to continue my meds and do those healthy things that my body loves so much such as workouts, eating well, swimming.

But not every moment has to be filled with the writing of words. When was the last time I sat and read a book? When was the last time I painted one of my canvasses? When was the last time I sat and watched a movie?

It seems that, by trying to find a way to live my life to its fullest, I have put myself further and further into that box I carry inside my head. I can’t let other things slide in order to just focus on one thing. Writing isn’t everything and there is so much that I want to do.

So, maybe I really need three things: How to break out of the box, how to break free of my routine and break out of my head.

This requires some food for thought, for sure, but also a re-evaluation of what is important to me. Over the next little while, I am going to re-engage with my brain and my body and try to recognise that I’m only human.

I may be doing the work of three people, but I’m allowed to do the work of one person, too. I just need to remember that.

Posted in Brain Fog, MRI's, Neurologist Appointments, People | Tagged , , | Leave a comment

I’m Alive For This Moment

Posted on September 9, 2018 by Jamieson Wolf

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.

Posted in Depression, Doctors, Falling, Fatique, Insomnia, MRI's, Symptoms | Tagged , , , , | 2 Comments

The Lion and the Internal Orchestra

Posted on June 23, 2018 by Jamieson Wolf

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.

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