The Lessons I’ve Learned

Posted on May 16, 2023 by Jamieson Wolf
The little yellow magnet that started it all.

Ten years ago, my life changed not once, but twice. The first time it changed, I had no control over what happened, and it ripped over my body like a storm. The second time it changed, I was the one in control, standing in the middle of that storm against the onslaught of my body.

I was diagnosed with multiple sclerosis ten years ago in April of 2013. The weather was the same, warm and slightly sticky with humidity. My body had become something unknown to me and my life was a dumpster fire. I was unsure of where I fit in the world as it was now, no longer at home in my own body and its unfamiliar terrain. After months of now knowing what was inside my body, I finally knew and yet, I felt more lost than I did before.

I believed I was okay, that I would be all right. I would choose joy, but it ended up being some kind of cruel joke as the storm grew around me and the dark forest of my depression grew larger by the day, the trees taking shape in my waking hours and my nighttime wanderings. I was lost within myself. I came close to taking my own life, believed my boyfriend at the time when he called me broken and let my power be taken away from me.

I remember when my life changed the second time. When I picked up that little yellow magnet off of the floor and read those six small words. Never let it be said that word don’t have power. Looking at those words was a revelation: my life is up to me.

Knowing that life had to change, that I had to change some of my habits, I set about trying to honour my mind, body and spirit. I broke up with the boyfriend (for good this time) and focused on loving myself or trying to; I needed to learn to love all of myself and that included the multiple sclerosis and the cerebral palsy that made my life difficult. That’s an ongoing process, loving all of myself, but I’m getting there.

I threw myself into workshops that would better my spirit. I took workshops on manifestation, Tarot, reading all kinds of different texts about astrology and numerology. During those workshops, I realized that the world was so much bigger than I thought it had been. It wasn’t a world filled with just MS or CP, it was a world filled with mysticism and wonder, of sights waiting to be seen and knowledge waiting to be absorbed. I was a sponge. I wanted to learn everything I could and, in the process, I learned about myself.

I learned to walk again with a cane and with that hill conquered, I started walking the MS Walk and walking has become a daily part of my life. I started doing a workout three nights a week, knowing that being active was another way that I could have some control over the storm that was contained within my body. I now workout four to five nights a week and I still go for walks. It feels like with each step, I’m taking back a bit more of myself.

The work continues on my mind. I’m working on self-love and trying to work through past traumas. I talk with a therapist and try to remember not to be too hard on myself. That’s easier said than done but therapy is helping and being open with my feelings helps too. It also helps that I’m married to a man that I don’t have to hide myself from, that he sees all of me and loves the parts of me that I have difficulty loving.

What I realized during all of the work that I’ve done on myself is that I have been living my best life and that came from the MS. It forced me to look at things in a different way and to cherish the celebrations and the joy whenever they came. I know that I lived before the MS came into my life, but from the moment I woke up on new years eve day and couldn’t walk or speak, my life path had a different path, a new trajectory that I could either fight against or follow. I chose to follow it and it has led me to the most amazing parts of my life.

When I look in the mirror, I try to remember who I was before MS and it’s become so wrapped up in who I am and my memories of self that it’s hard to separate the two. Nor would I want to. MS has taught me what really matters in life, how to truly be thankful and grateful and what to be grateful for. It’s opened up my mind to a whole new sense of who I am and the possibilities that are open to me now that I’m living my best life.

Had you told me that in ten years, I would be living the life I am now, I would have laughed sardonically at you. I never would have believed I would be living the life that I am living. I’ve had to really change the way I think about life and about the path that I am taking, and I know that, for myself, positivity and a sometimes-maniacal sense of humour is such a big help.

I don’t know what the next ten years will bring, but I am thankful that ten years ago, I looked down at that little yellow magnet and made a choice for myself.

The one thing that I’ve learned in the past ten years is the simplest lesson:

My life is up to me.

Posted in Anniversary, Lessons, Multiple Sclerosis | Tagged , , , , , , , , , , , , , | Leave a comment

Boats of Many Colours

Posted on May 9, 2023 by Jamieson Wolf

I forgot again.

There has been this pressure building in my mind and I couldn’t figure out why. My emotions have been like a constantly moving sea, unknowable and almost insurmountable. I’ve been carrying around depression like a hairshirt, feeling like it’s just something that I have to live with, even if I don’t know why. I stopped questioning the turmoil within and kept on with the business of living as best as I could until last week when it hit me.

May is my dark month. Or it used to be.

I was diagnosed with multiple sclerosis in April of 2013. I would have to wait until August to find out which type of multiple sclerosis I had living inside of me. At the time, I thought I was okay. I was born with spastic cerebral palsy. I had been disabled all my life; what was a disease on top of that?

Turned out, it was a lot. There were a few other issues that I was dealing with at the time including an abusive relationship. All of this brought on a crippling depression. I lived within the dark forest and didn’t even know. The whisper of the trees kept the voices company; the voices liked to tell me that I was broken.

I remember the moment I almost took my life. That moment is always crystal clear to me. I had just been prescribed one of my first medications, a painkiller named baclofen. I was at work, and I sat outside having a cigarette. I put the cigarette out and poured the bottle of pills into my hand and picked up my bottle of water. I could not feel the breeze on my face, nor the sun on my face. There was only the forest and it wanted all of me.

I called my boyfriend at the time and told him what I wanted to do. He told me to go for it, to kill myself, to stop bitching about it and just get it done. I hung up on him and did what I should have done in the first place and called my mother. She told me that she didn’t raise a quitter and that better things were coming, I would just have to welcome them when they did and believe in the possibility of maybe.

Trauma like that stays with you. Even though my body and spirit had forgotten, my mind didn’t. It’s been trying hard to pull me back into the dark forest where I used to feel so much at home. I’ve been trying to do what I can to ignore the forest and the trees that know me so well. I think in the end, it’s easier to let the emotions run through me rather than to fight against them.

I have learned one thing from the past. I no longer try to mask the emotions with joy that doesn’t reach my eyes. I no longer try to hide behind a wall of positivity so that no one around me needs to see the fragile shell that lays inside. I’ve let go of the toxic positivity that I held on to so desperately, needing to ignore the sadness until it nearly swallowed me whole.

I have forged new paths and new memories, less replacements and more instead of’s. I have done what I needed to develop new patterns and new behaviours. I eat well, I exercise, I meditate every day. I take medication to help balance my emotions. I practice self love as much as I can, and yet, the waves of emotion are still there.

And that’s okay.

I’m glad I forgot, but instead of constantly trying to turn away from the sadness, I need to take a moment or two to sit and reflect on what the sadness is trying to teach me. When I close my eyes, I can see the waters flowing out from me. In the waters are tiny boats filled with different emotions. I can see the bright pink boats of joy, the green boats of growth and the yellow boats of transformation. I can see the red boats that represent love and the blue boats that are my sadness, almost the same colour of the water. The blue boats look as if they were painted by the storm from which they came.

I pick one gently from the water and I hesitate to look inside it. I take a deep breath and when I look down at the boat, I can see my eyes reflected on the waters surface held within.

Instead of shoving those boats aside to make room for the boats with brighter colours. I need to remember that all the boats of many colours come from me. They are all pieces of a puzzle and together they make up the canvas of me.

Even though I’ve done what I can to deal with my emotions, I can’t turn my back on them for they are the many facets of who I am and they can help me produce magic. I place the blue boat back in the water and follow it along on its journey to see what secrets of the waters it has to tell me.

Posted in Cerebral Palsy, Depression, Multiple Sclerosis, Self Harm, Suicidal Thoughts | Tagged , , , , , , , , | Leave a comment

The Light of Small Joys

Posted on April 27, 2023 by Jamieson Wolf

The thing is most of the time I feel okay.

I can pretend that there is nothing wrong, that I’m totally fine and I don’t have anything to worry about…but then my mind reminds me of the fact that I’m in isolation at the moment. My most recent bloodwork showed that my red and white blood cells had plummeted to levels they had never seen before.

I recently went through my second round of Mavenclad, a drug that is normally used to treat Lymphoma cancer. The idea being that it will eradicate my immune system and when it grows back, it will do so without the lesions that cause my MS. I never thought I would go through chemo to treat something that wasn’t cancer and that the drug may cause cancer in the end; the irony isn’t lost on me.

It’s been a bit of a roller coaster ride. I’ve had dizzy spells, hot flashes, nausea and fatigue. There have been falls, too but I don’t know whether those have anything to do with my cerebral palsy or my MS. I’ve lost sight of where one disability ends and the other begins.

 I finished my treatment a couple of months ago and I know from talking to my MS nurse that my immune system is at its lowest right now. I have to stay away from people as much as possible as I’m now prone to parasitic infections and other maladies. Since Mavenclad is a form of chemo, its side effects are very similar.

It’s odd to think that something I can’t see is determining what I can and cannot do, however going through Mavenclad treatment has taught me a few things about myself, mostly to listen to my body. This is something that I’ve had to learn how to do. It’s hard for me having a body that sometimes limits what I can or can’t do. It’s hard to be resentful when it’s the only body I have.

Sometimes, when I stop to think about it, I can visualize my immune system like a sea and the water levels are growing lower and lower. However, the lovely thing about tides is that they always find their way back. I know that it will take time for my system to regrow, and I just have to be patient.

I’m trying to approach everything with positivity. Not toxic positivity, I’m trying to outgrow that habit of pushing everything else aside until I’m only left with the sparkle. No, I’m just looking for the gift in every day, the small joys that make everything easier to deal with. I learned early on in my journey wit MS that positivity and a positive mindset are key.

Those gift can be spending time with my husband, writing a few pages of my current book that I’m working on (or this blog post), working on a new painting, a phone call with a friend, spending time with our cat Anakin who is always up for a good cuddle session or a cup of tea and a good book. The joys don’t have to be big, just big enough to shed some light into the shadows.

I’ve had friends remark that they often forget what I’m dealing with because I’m so positive most of the time. I often forget too, but the body takes the time to remind me. There always seems to be so much on my shoulders and inside my head, all these words that need to be said, emotions that need to be felt and acknowledged. There always seems to be almost too much to think on and work my way through.

I am thankful for the small joys that I have in my life and for the big joys, too. I’m not avoiding thinking of the big things, jut choosing to think about something else for a while until I can work my mind around what I really need to think about. If that means I write a lot or paint a lot, so be it. In the end, every word and canvas make up a whole world that I can explore when things get a little too dark.

The little joys are the lights in the darkness so that when it gets to be too much, I can always find my way home to myself.

Posted in Cerebral Palsy, Depression, Fear, joy, Multiple Sclerosis, Symptoms | Tagged , , , , , , , , , , , | Leave a comment

The Deity of the Waves – Thoughts on Chemo and the River Within

Posted on January 28, 2023 by Jamieson Wolf

I had three dizzy spells today.

I was sitting for one, standing for another and walking in my apartment for the third. The dizziness and nausea passed quickly and each time I was able to hold on to something to stable myself. I was doing a different thing each time, so there seems to be no rhyme or reason to it.

I know that I’ve been through this before, after all this is my second round with Mavenclad. The thing is, I don’t have any concrete memory of what it was like last year, just this vague memory of feeling unwell and sick during my first round with the chemo drug. I remember isolating during the holidays season as a precaution, but not much else. I don’t remember what symptoms I lived with during that time.

I remember each fall I’ve had though. Those falls began after I had chemo. They would start with a sudden dizziness and when I tried to get up and go back to bed, the dizziness would be followed by the loss of all motor control and a complete black out with no memory of how I ended up on the floor, just the sound of my voice calling out as I fell. All of my doctors say that Mavenclad doesn’t produce those kinds of symptoms, but I’ve never fallen like that before.

I knew that this second round would be different as my body is still dealing with the affects of last years treatment. I’ve had a variety of symptoms that differ by the day including absolutely crushing brain fog, dizziness, pain, fatigue, nausea, forgetfulness and hair loss, some of them starting on the day I took the first couple of pills. I’m a lot more wary this time around, knowing what it can do. Either way, it certainly been an adventure.

There’s one thing on my mind this time around. Even now as I sit here writing this, my immune system is shrinking and shutting down. Eventually, I will left with a little barrier, much like those pawns that protect the real players on a chess board. I like to picture the shrinking of my immune system as a tide, gentle one moment, crashing the next, followed by the calm of silence.

Four months from now, I will have to be real careful and I will have to isolate myself, at least for a couple of months while my immune system regrows itself. Then there will be an MRI to set my baseline and then another to let me know if the Mavenclad did anything, or if I will need another round of chemo next year.

I choose to think of those two months that I will be isolated as guard duty for the deity of the waves within me. I will have to protect the water within, watch the ebb and flow as it starts to grow again. When the deity regains enough of its power, I will be there to watch it flow into the dry soil that my body will become, ready to protect me, just as I have protected it.

While I wait, I just have this feeling of uncertainty within me. I don’t know what is in store this time, but I’ve chosen to sparkle and focus on the positive things in my life as well as the power of laughter. I have experience with toxic positivity and I won’t engage in that kind of behaviour again. I don’t want to use joy as a cover or a mask this time, but as something to help me heal and find light in the darkness.

I figure with every laugh, every moment that makes me smile, it will help the deity of the waves find its way back home to me once again.

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This Is My Journey

Posted on December 3, 2022 by Jamieson Wolf

I’ve had a lot of different health issues lately.

To begin with, I saw my chiropractor a few days ago. It was an assessment appointment to see how far I’ve come in my healing. I broke one of the vertebrae in my spine when I fell one night a few weeks ago. You can read about that in THIS post.

While he’s happy with the progress I’ve been able to do, he asked me to take another two weeks off work, subject to revaluation. I’m still experience a lot of pain; it’s difficult for me to make it a full night in bed and the pain will flare up if I try to do too much (which I always seem to do).

Resting is hard for me, as I equate my creative output and my productivity as my worth and my value as a person. I’m trying to break this habit, but it’s hard. I am for sure going to be talking to my therapist about this.  I know that this stems from my father and the lessons that he taught me. Go figure that the unhealthy ones would stick.

However, in the past almost five weeks, I’ve learned some things. I have learned about the value of daily naps, almost daily baths, the joy of sitting with a good book or a fun game on my Nintendo Switch. I’ve incorporated these practices into my daily routine to try and find some balance and some clarity while I try to ignore the internal critic.

The internal critic tells me that I’m being lazy, that other will think less of me if I don’t push through, that I should be doing all the things (!!!). Thankfully, I’m getting a little better and telling him to go away, it’s hard though. I need to allow myself the care and the time that I would give to anyone else. It’s always more difficult when it comes to me though. I know that I’m not the only one wired this way.

Added to the issue with my back, got an email for testing last week. It was at the same place I went to have X-Rays for my back, so I figured that it was a follow up X-Ray for my chiropractor and that maybe he just forgot to say something about booking the appointment. When I was called in to the exam room, I was surprised to be taken in for an ultrasound.

According to the technician (who had the bedside manner of Sweeny Todd), my family doctor ordered the test as she wanted to look at my bladder, prostate and kidneys. The technician berated me for eating anything as I was supposed to have fasted.

The thing is my family doctor didn’t say anything to me about wanting to look at my bladder, kidneys and prostate. The last time I saw her was a few months ago to deal with my high blood pressure and about needing antidepressants. I have no idea why she ordered the ultrasound or what she could be looking for. I’ve put the worry in the back of my head for now and there’s been no follow-up from my doctor at all. Hopefully she would have the test results by now and will (hopefully) call for an appointment.

Because things come in threes, I’ve also been waiting for the results of bloodwork that I had done on Friday. I am waiting for my red blood cell count to get from 0.07 to 0.08 so that I can start my next round of Mavenclad chemo medication. Knowing that the hospital would have gotten the results by now, I sent them an email asking if I had the green light for Mavenclad. my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.

 I had my bloodwork done last week and had to email the MS clinic to find out if my Mavenclad was going to start soon or if I had to schedule another appointment for more bloodwork to be done. I know that hospitals are overrun and overworked, but to my way of thinking, I should not have had to email them myself. Once again, I have to be my own health advocate. The MS clinic once renewed my faith in medical science. Now it’s one of the examples of our overworked health system. I heard back from the infusion clinic this morning (not my MS clinic nurse or neurologist) and my red blood count is still at 0.07 unfortunately. I’ve scheduled another bloodwork appointment for just before New Years. Hopefully my red blood count will be up to 0.08 by then.

I should have received a call from my nurse at the MS clinic and I should have had an MRI done between rounds one and two of the Mavenclad, but that didn’t happen. I saw my neurologist month’s ago with no update on what’s going on. I even heard from the company handling the Mavenclad and they gave me a list of questions to send to my MS nurse when I got the first round bloodwork done…with no response at the time except to tell me that the MS clinic was closed for two weeks and there’s been no contact since.

I’m annoyed and feel really let down. Is this the state of our medical system?

I should have had an appointment or a phone call with my family doctor before she ordered tests to be done. I should have received an MRI appointment to prove that the first round of Mavenclad actually worked or made a difference. I should have been told about everything the Mavenclad would do to my body; to me, knowledge is power and forewarned is forearmed. I actually want to know all the ins and outs, no matter how boring. It is my body after all. I really wish that I would have been told everything. It would not have changed my path, I would still have taken Mavenclad, but I would know more about what to expect.

I know that doctors are under an incredible amount of strain right now. I get that. Covid made the holes in our medical system very evident, and I know that a lot of stuff is bound to fall through the cracks. However, with both my family doctor and my neurologist, I was not given information I should have been told. All I can do going forward is to be my own health advocate and remember to ask more questions and not take what I’m being told at face value. I’ve sent an email to my MS nurse and requested an appointment with my family doctor. We’ll see what information I’m given or not given.

I need to remember that this is my journey and I decide what direction I go in.

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Pushing Through

Posted on October 28, 2022 by Jamieson Wolf

I have difficulty sitting still.

I’ve always been this way. I fill up my time with different projects and things to keep my mind and body busy. I’m always writing a new book, a new short story or a poem or perhaps I’m working on a painting. I am always working on some kind of creative endeavour. I also work out in some way six days a week and on top of all of that, I work full time.

I do all of this despite the fact that I was born with spastic cerebral palsy and I also live with relapse and remitting multiple sclerosis. I’m used to pushing through the pain, trying to force my way around it so that I can accomplish the tasks that lay before me or the ones that I’ve set for myself.

I’ve been trying to think why I do this to myself, ignoring the pain as much as possible so that I can forge ahead instead of letting my body heal the way that it needs to. I think I’m just hardwired to try and outrun my disabilities as much as possible. If I accomplish all of these tasks, all the writing, painting all while exercising and working full time, somehow this will mean that I’m able to live beyond my disabilities and that they can’t hold me back.

I’ve always done this to myself. When I was first struck with multiple sclerosis, I went back to work after two weeks, even though I could barely do anything. I was so determined to prove that the MS wouldn’t hold me back that I pushed through all of the pain and the difficulties that I was experiencing. I had to prove to myself that I was stronger than the MS. Retrospect is 20/20 and I know that I did myself a lot of harm by ignoring my body.

It’s a habit that continues almost nine years later. I’ve always had a lot of difficulty listening to my body and watching the signs that my body gives me and sometimes choosing to ignore everything out of sheer stubbornness.

Recently, I got Covid. My husband and I had been so careful to stay safe, but the new variant is tricky and we got Covid. It was like a really bad cold, but there are other things at play for me. I started my first round of Mavenclad last year and my second one is coming up soon. It’s been causing me to black out and fall. This happened three times before my family doctor figured out that it could be caused by my blood pressure. I thought everything was under control, but I didn’t account for Covid symptoms.

My immune system is already lower because of the Mavenclad and I already have vertigo and balance issues from the MS. Add the dizziness caused by Covid to the mix and it’s no surprise that something happened.

I started having night sweats, so I got up out of bed to take off my t-shirt and open the window. Taking off my t-shirt was as far as I got. I remember turning towards the bedroom window when everything went black. I fell hard right on my tailbone and could feel pain radiate throughout my body. I knew something was wrong but didn’t know what. My husband found me on the floor and helped me back to bed where I lay in agony. I took a couple of days off of work to deal with the end of covid and my new injury.

Instead of relaxing, I wanted to prove that I could live beyond my injuries, that I could still be productive in some way. I chose to engage in some baking therapy, thinking that it wouldn’t take too much to bake a loaf of cinnamon swirl banana bread. Well, my body had other ideas. The pain was so bad that I could only do one thing and then sit down. Mash the bananas, sit down, mix in the wet ingredients, sit down, mix in the dry ingredients, sit down. On and one this went until I was able to put the pan in the oven. It took me two hours to do this. Thankfully, the banana bread turned out wonderfully, but I was in a terrible amount of pain.

I finally booked an appointment with a chiropractor. The pain was not going away and even though I was taking Robaxocet and ibuprofen, the pain would only lesson, not disappear. The chiropractor sent me to get X rays which I did earlier this week and I met with him the other day. I have a compression fracture in one of the vertebrae of my spine. There would be pain for four to six weeks but with his help, I should get back to 80 to 100%. He put me off work and told me that the only way to help myself heal was with rest. He gave me four weeks off work.

The fact that I made banana bread with a broken back is not lost on me. I was so desperate to prove that I could still be active and productive that I tried to push through the pain as I always had before, except now it wasn’t working.

I know that part of the reason that I stay so active is that I am trying to prove to myself and to everyone else around me that I am living beyond my disabilities. Also, why does all the rest time in order to heal frighten me? There is nothing wrong with resting and even if I’m just reading a book, I’m still being active.

I have to let go of the need to be productive to the point of hurting myself. I need to stop trying to push through the pain in order to prove something to myself and to those around me. Rest should not be just for healing but should be part of my daily life. I don’t need to write, paint or create all the time. My worth is not determined by my creative output and I need to remember that. Even if I am not writing or painting, it doesn’t mean that I’m not a writer or a painter.

I’ve been trying to think of where this need to be so productive came from. I know that before I was diagnosed with multiple sclerosis, I was doing the same thing, always writing and painting and working full time. I think it goes deeper than that now. I think that since my diagnosis, I’ve been trying to outrun it in some way in case I’m ever bedridden again. In living with a disability and a disease, I’ve convinced myself that I’m able to go past the pain, that pushing through it is the only way when I should be comfortable with resting and treating my body like the temple that it is.

Even now, in writing this post, I had to figure out how I could write without causing myself. I’m unable to sit at my office chair so I’m currently writing this on my laptop while leaning back on the couch so that my back is against a heating pad. Resting is difficult for me. My mind keeps telling me that every moment I’m not creating something is a moment wasted.

What I need to learn over the next few weeks is that resting is not a punishment, that giving my body the rest that it needs will allow me to heal all the more quickly.

Going forward, I need to honour my body and listen to it more clearly. Listening to my body isn’t a bad thing. I need to stop seeing any lack of productivity as a lack of my worth. Rest is not a punishment, it’s a reward. I need to stop pushing through but honour my body’s limits and boundaries and treat it like the temple that it is.

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Happy Birthday Max Shadow!

Posted on August 21, 2022 by Jamieson Wolf

I was diagnosed with Relapse and Remitting Multiple Sclerosis nine years ago today. I thought about what I wanted to write to honour today and the following letter to my multiple sclerosis is what came out. I hope you enjoy it.

Dear Max Shadow,

It’s hard to believe that you are nine years old today.

I still remember the first time that I met you. The moment of your birth came a day before my birthday. I didn’t have any presents to give you, but I knew that something was arriving that day. I just had no idea of what would be happening to me that day.

Except that’s not true, is it? I knew what was coming, but hearing it said out loud, having the doctor name you, well no one can prepare for that. I told myself that I was okay, and I was and wasn’t at the same time. The doctor was very gentle as he handed you to me. I looked down at the clipboard showing the test results and knew only a subtle kind of peace.

You had me convinced that I was crazy, that the lack of control over my body could be all kinds of things and when the doctor named you, I knew blessed relief. I was not crazy; I was not losing my mind. What was wrong with me had a medical name, even though what you did to my body could change in an instant, depending on your mood.

Quite often, you tried to speak through me, twisting my mouth so that I had difficulty speaking. Sometimes, if you felt like it and you often did, you would increase the pain levels within my body so that everything felt as if it were on fire. You would take away my sight so that everything was blurry or out of focus and no matter how many times I rubbed my eyes, the blindness would stay until you let it fade until everything became clear again.

For months, I lost myself in the forest, unable to see past what was happening to my body and what you were doing to it. When the doctor named you, I cried, but there was joy within them, the salt contained in my tears cleansing me as they flowed through my body and fell from my eyes. The salt burned away a large part of the forest, the salt in my tears chasing away the dark shadows that had surrounded me for so long.

You never intended to help me, you were only interested in taking from me, like all the bullies that I have known throughout my life. So, I did the only thing I could think of doing: I chose to stand up to you. I chose to fight against what you were trying to do to my body. You had taken away most of my control, but I did whatever I could to control what I could. You took my memories from me, so I made new ones. You were unkind to me, so I showed the world kindness. You took my balance away, so I found a new way to work with my body. You made people look at me with pity, so I learned to love myself. You took away the direction I was going in life, so I chose a new one. You had filled my world with sadness, so I chose to look at the world with joy.

I also gave you a name of my own. The doctor had called you Multiple Sclerosis, but I chose a different name for you since I knew you so well, so intimately. I chose to call you Max Shadow. You liked to hide within me and rarely came into the light, letting me do all the work. I believe in a lesson I learned from one of my favourite book: fear of a name only increases the fear itself. With a name given to you, I no longer feared you.

I know that I’m a better person now than I was nine years ago. You taught me how to be truly grateful for everything I have in life and how to be thankful for every moment, every simple gift and small joy that came my way. My life may have taken a direction I could never have foreseen when I met you, but I am so thankful and grateful for you, Max. I am thankful for you because I have the life that I do now and I’m grateful because had I never met you, I have no idea where I would have ended up.

I’m not going to say that everything happens for a reason. I really hate that phrase. There is no reason for the suffering that I went through because of you. However, without you I would not have grown into the person that I am now. Without you Max, I would not have learned to overcome or to thrive instead of just survive.

For your birthday, I am giving you my thanks because of what you have taught me. I hope that is enough. For myself, I turned this day into a celebration so that I can remember what you took from me and how I have thrived because of you.

Jamieson

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Bodily Able – A Reflection

Posted on June 16, 2022 by Jamieson Wolf

I don’t often feel as if I live in an able-bodied world.

I know that we do. There isn’t much that is made with people who are disabled in mind. Those who aren’t disabled don’t have to think about anything, and why should they? They have enough to worry about.

I was out and about today as I was doing an all-day event. One of the first activities was a scavenger hunt. I was hesitant about being around so many people, but we were outside, and I kept my mask on most of the time, so I wasn’t worried. I was looking forward to a day of fun and simple pleasures, seeing people that I hadn’t seen in over two years.

From the moment we set off to follow our clues around Ottawa’s downtown core, I fell behind. Everyone else on my team walked faster than I did, and they rarely looked back to see where I was. I had to walk quickly to catch up to them. When I walked fast enough, I was able to walk with my team. I was frustrated but didn’t have enough time to reflect on how that made me feel.

At one point during the scavenger hunt, my group made their way down a huge, curved hill. Knowing myself and my body as I do, I knew that if I had attempted it, I would have fallen as I have no balance when it comes to anything slanted. I need something to hold to like a railing to be able to keep my balance.

“Is everyone okay to go down this hill?” Someone in my group asked. It was a hard pass from me and someone else who was wearing wedge sandals. We took the stairs down. I can’t do down very well with stairs either and tend to lose my footing. There was no railing, but there was a pointy fence that I could hang onto, thank goodness. It was safer to worry about losing my balance on the stairs than it was to tackle the hill.

We finished the scavenger hunt and ended up down in the market where we were set free to go for lunch. After we all met up at Majors Hill Park with our food. That was fun as I was able to talk with people I hadn’t seen in a long time, so there was some joy in the day.

I was worried for two reasons: the ground is uneven, making it difficult for me to walk if I’m not taking my time. Even when I did, there were a few instances where I lost my balance and had to right myself.

That, and there are no washrooms around.

Before the multiple sclerosis made itself known, I had a pretty small bladder. Now, with the MS, I have a near constant need to urinate. With no washroom in sight, I had to miss an afternoon activity so that I could go and find a washroom.

While I walked away from the group to find a washroom, I could reflect on what I was feeling. I was frustrated and for a moment, I thought that I was weak because I could be undone by such simple things. Then I held on to that thought. I know in my heart of hearts that I’m not weak, not by any stretch of the imagination. I know that. I often struggle against what I see as the limitations of my body. For a time, I used the term differently abled instead of disabled, but that implies that I am different from other people. I am different from anyone else, being a unique individual, but over time the term differently abled seemed to separate myself from others.

However, in those small moments, I always take a moment to picture myself on an island. I stand on this small mound of stand in the ocean and wonder what I want to fill my island with. I could be angry, I could lose my temper, but then what would that solve? I was the only disabled person amongst the group that I knew of and there’s no reason that the other people there or the organizers should take my disabilities into account.

I often struggle with simple things, so this time was no different. There have been a few outings that I’ve been on when I’ve had issues, but I try to always move forward and if I can’t, I find a way around what I can’t do. I always overcome the obstacles that are in front of me. There are times I wish that I didn’t have to deal with any obstacles, but I think dealing with them and overcoming them have taught me a lot about myself and what I am capable of.

These may seem like small mountains to climb, the scavenger hunt, a bumpy field and the lack of a washroom, and they were, but the thing about it is that those mountains shouldn’t have been there in the first place. If the world was a kinder place, everyone’s needs would have been thought of while the outing was being planned. However, we come back to the same thing. I’m open about my disabilities, but often I feel as if I’m not heard.

Like I said before, I’m not angry, people have enough going on in their lives what with the pandemic, the war and everything else going on in the world. They don’t need to hear me complain, but I should educate when I have the chance. I should use my voice to speak about the issues I face to talk about them and be an advocate for change.

I no longer think of myself as differently abled. I will use the term disabled but I will never use the word crippled; that’s always seemed like a derogatory term to me and no matter how many times I see it, a part of my cringes inside.

While I won’t use either term, I prefer to think of myself as bodily able. I’m not necessarily able bodied while I’m living with cerebral paly and multiple sclerosis however, I am not helpless either. My body is able most of the time and when there are those times I find myself having to take on a mountain, I will do so, even if it’s to find a way around it and change my path.

I know that the able-bodied people of the world don’t often think of those with disabilities or the needs that they face, but we need to change that. I should have had my needs considered today, no matter how small they are. I should not have been made to feel like I was on an island, surrounded by all those misfit toys.

One thing I have learned about making my disabled way through an able-bodied world is that I have the unique gift of being able to see different parts of the world that are often overlooked. What I see from down here is that even though there are shadows, we live in a world full of fighters and warriors of which I am one of them.

I don’t often feel as if I live in an able-bodied world, but when I do, I just need to remind myself that I and my body are able; we just have to find our own way to do things and use my voice so that I can be heard from within the shadows. All I need to do is use my voice and shine. I did so today when I checked my phone after I got home. I walked over seven kilometres and 10,000 steps today.

Sometimes, you have to celebrate the small wins and I always celebrate when I didn’t let a mountain block my path.

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The Power of Forgetting

Posted on May 12, 2022 by Jamieson Wolf
Me, looking out at the waters of Alaska

I’ve started this blog post a few times.

At first, it was a rundown of everything I’ve already talked about, how I was diagnosed with multiple sclerosis nine years ago, how I almost took my own life, how I was lost within myself and the dark forest. I stopped writing the blog post because I really wanted to think about what I actually wanted to write.

I mean, nine years is a long time to live with any disease. I didn’t want it to be a pity party, goodness knows that I’ve written a few posts like that. Instead, I was drawn to think on everything I’ve been able to accomplish in nine years, rather than focus on what the multiple sclerosis took from me. Nine years is full of so many memories, so I thought I would take a look at nine different memories and what I learned about myself. These are just ones that stand out to me.

2014: I did my first MS Walk. I trained for a few weeks, not sure if I would be able to even walk a kilometre. I would walk during my breaks and during my lunches, trying to see if I could do this. My mother and my team walked the kilometre in just under an hour. Later, I would meet a rehabilitation specialist that would give me a workout routine that would strengthen my core.  I also met Michael, the man who would become my husband. He would change my life and how I viewed myself, though I didn’t know it at the time. Michael also took me to Orlando for the first time so that I could see the Wizarding World of Harry Potter.

2015: Michael took me to Niagara Falls for my birthday. I had never been and had wanted to see one of the most romantic places in Canada with the man I loved. Michael and I went to Cuba for the first time with our friends Rick and Mike. I was worried about the amount of walking that we would do, but I was a champion! With a little help, I was able to walk up a mountain and watch a waterfall as it fell from its source, splashing down into the pools below. Manzanillo was gorgeous and such a balm for the soul.

2016: We went back to Orlando again so I could see the Wizarding World of Harry Potter once more and also to Varadero Cuba. We wanted to try something new, and I wanted to see the places where Ernest Hemmingway had written. I sat at one of the bars he had frequented and I pictured myself absorbing some of his brilliance. It was still Cuba but it felt like an otherworldly place, full of mystery. Michael also proposed to me. We had been talking about having a commitment ceremony, but he surprised me and proposed. I set about getting a divorce from my ex-husband. He never paid for any of it, I covered the whole thing. I wanted the chapter with him done before I started a new one with Michael.

2017: Michael and I got married in 2017. I never thought I would be married again but then again I had never met anyone like Michael. It was and is the happiest day of my life when we got married. It still feels like we got married last year, not five years ago. We went to Costa Rica and stayed at the most amazing five star resort in Liberia Costa Rica. We went on a few memorable excursions. In one, we walked for a couple of hours through the rainforest, and it was a little treacherous, but we survived. We went to a hot spring and mud bath, had massages, lounged by the pool. My favourite moment was when we ziplined through the Congo and climbed a mountain only to zip line downwards. It was so incredible, and I still remember seeing the monkeys in the trees as we zipped by.

2018: I turned 40 in 2018 and Michael surprised me with my first cruise. We had a Harry Potter themed birthday party with our buildings party room decked out like the great hall and we left for British Columbia the next day. I had never been there and it was such a joy. The cruise was incredible and so decadent, and Alaska was a dream. I had thought it would be a land full of snow and ice and it was, but there was also this majestic beauty to it that spoke to me. The best memory is zip lining off a mountain that was higher than the Empire State Building. It was forty minutes up the mountain and ninety seconds down. It was glorious. We also went back to Cuba to Santiago this time.

2019: We went to Orlando again with our good friends Marg and Catherine and stayed right in one of the resort hotels. They both wanted to see the Wizarding World of Harry Potter too and it was such a joy to experience everything with people we loved. At one point, Catherine and I had our wands and were going around the park, trying to make magic happen. What I realized during that trip was that the magic was within us already. We went to Cuba again this year. We went back to where it all started and returned to Manzanillo and we were able to travel to new places and see new sights.

2020: We adopted a new cat, Anakin who would quickly become my baby. Then pandemic started and the world changed. At first, we were isolated and I was so thankful for Michael and the love that we had together. I think in some ways, the pandemic brought us closer together. All we had was each other and I’ve never been so thankful for someone who knows me so well.

2021: I did something for myself. I finally admitted that I needed to talk to someone and started talking to a therapist. I had to do this for my own sanity as my husband, as wonderful as he is, should not be my therapist. It was one of the best decisions that I’ve made for myself and it was so lovely to have someone to talk to so that I could work through all the crap that I’d been carrying.  I also went through a new chemo treatment. It would wipe my immune system away and when it rebuilt itself, it would hopefully do so without the lesions. I was afraid, but I faced that fear and overcame, with the help of Michael and family and friends.

2022: And now we find ourselves in present day. I took on a temporary promotion at work, published a new book of poems and have been trying to find comfort in the brave new world that we find ourselves in now.

As I look back at everything I’ve accomplished and all that I’ve done, I can only marvel at it. It seems that just when I thought my life was over, it began again. I’ve said it before, but the MS has certainly made me more thankful for the life I live. I’m even more grateful for the life that I have with Michael.

He is the prince that I wished for all those years ago. Before I met him, I didn’t think anyone had heard that wish. Because of Michael and the life that we have together, I was gradually able to forget about the fact that I was diagnosed with MS on May 10th. I forgot again this year, too and that’s a wonderful kind of gift. I am grateful for him every day. I do wonder what will come in the next nine years, though. What treats or sights will it have in store?

I only have to live my life one day at a time in order to find out.

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Captain Maven and the Shadow Man: AVAILABLE NOW!

Posted on April 24, 2022 by Jamieson Wolf

Fantastic news! Captain Maven and the Shadow Man is available now!

I meant to have this book published for the holidays but with one thing and another, that didn’t happen. I did put it out on my blog, but this is the first time that it’s been available for purchase.

Here’s a bit about the novella:

It’s Christmas time in Ottawa.

Captain Maven is a superhero with a broken heart. After a bad breakup, he hasn’t been himself. The other superheroes in their group have been worried about him, but all he can do lately is look into his cup of power and remember what used to be. Finley, who controls fire, tells Maven to call his ex, but Maven knows that he can’t do that. Carley Bravo tries to cheer him up by offering to alter his mood, but Maven declines. He’d rather be miserable, even if it is Christmas.

When the nefarious Cracklepuss starts to kidnap children, they all know that they don’t have much time. However, this time Cracklepuss is not acting alone. There is a man that walks in the shadows, thankfully Captain Maven seems to have drawn the shadow man’s attention. When the shadow man endangers Gregory, Captain Maven’s ex boyfriend, Maven knows that their time is limited.

Along with Finley and Carley, there are a few others in their group: Tara can put people into an enchanted sleep and travel into the minds of others. Sandoz can reshape the world around him or destroy them at his will. Dez can control water and can cause rivers to appear where there was only a desert. Tianado can travel within the shadows, and he knows them well. They will have to band together and combine all of their talents if they hope to succeed against this unknown foe.

Can they save Gregory, find the shadow man and rescue children and the city of Ottawa from oblivion all before Christmas? A superheroes job is never done!

You can get your copy HERE.

A paperback edition will follow soon. Stay tuned for more info!

This book came about in a roundabout way, as all the best stories do.

I live with Cerebral Palsy and Multiple Sclerosis.

After my last MRI a few months ago, they found new lesions in my brain caused by the Multiple Sclerosis. I was put on a new drug called Mavenclad. Its purpose is to wipe away the immune system so that when it rebuilds itself, it will hopefully do so without the lesions. It’s a chemo drug normally used to treat leukemia.

When the medication arrived, it had a red sticker on it with a big white cross. I’d never received something with a medical symbol of any kind on it, but for some reason it stuck with me, that big white cross. I’m not sure how the subject came up, but when I was talking to my Wonder Mom one day during the treatment, she mentioned the fact that I was like a superhero and maybe the Mavenclad was going to ramp up my powers.

“I would totally need a cape,” I told her.

“Yes, a red cape with a white cross.” She said.

“No, not red and white. I would need a purple cape with a sparkly silver cross. That would be more my style.”

“Yes, you could be Captain Mavenclad!”

“Hmmm, what about Captain Maven?”

“That does have a nice ring to it.”

I couldn’t get the image of Captain Maven out of my head. I asked the very talented Cait Gordon if she could draw me a Captain Maven portrait. She did so, giving him a cup of power (I had to drink a lot of water when I took the Mavenclad) and a sceptre of light (I sometimes walk with a cane, and I like to sparkle). To say that I loved it is putting it mildly. It put the whole chemo med thing into something that I could draw light from, something that brought me joy.

Then it occurred to me, if my Mavenclad medication could be a superhero, what about all the other medications that I take? I ended up settling on Finley (Baclofin), Tara Dawn (Trazodone), Sandoz (Sandoz Solifenacin), Dez (Apo-Desmopressin), Tianado (Apo-Tizandadine) and Carley Bravo (CBD oil). They would be a group of superheroes who would do battle against Cracklepuss (Cerebral Palsy) and Max Shadow (Multiple Sclerosis), protecting the streets of Ottawa and keeping the people safe.

I normally write a story for Christmas every year and give it away for free. I thought it would be neat to write a story with this group of supers and set it during the holidays. It never occurred to me that I would write a full novella and I’m already thinking of other stories that could happen with the characters.

I can’t tell you what joy this story has brought to me and how much fun it was to create a world of superheroes that are really just like ordinary people…with a bit of something extra. I do hope that you enjoyed this tale as much as I enjoyed writing it.

Captain Maven and crew will return! Just watch the skies…

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