Learning to Like Myself – A Reflection

Posted on December 2, 2025 by Jamieson Wolf

As the year begins to wind into darkness, I usually find myself starting to think of the main thing that I’d like to focus on for the year ahead. My focus words for 2025 were Bridges and Boundaries. The intent was that I would build an emotional bridge to those I wanted in my life and boundaries against those who I didn’t want or need in my life anymore. It’s been a year of personal growth and choosing me which is hard for me to do.

It’s also been a year of introspection as I learned more about myself. I came out as non-binary after a long time of trying to come to terms with who I was and how I wanted to live. I realized that I was neurodivergent and autistic and I was diagnosed with ADHD. It’s been a lot to learn and relearn about myself and what makes me the fabulous me that I am.

This year, I want the focus to be on self-love.

I am so tired of hating my body. I know that a large reason for this is because I was raised to hate myself. I was born with spastic cerebral palsy, and I was not the perfect son that my father wanted. He called me all kinds of slurs as a child growing up and it didn’t matter what I did, I was still a severe disappointment to him. When you couple that with growing up as a closeted gay kid, it makes things more difficult.

 I had to attend school with the help of a teachers aid. This was an embarrassment. My father didn’t and couldn’t understand why I needed the care I got at school. I would not have made it through elementary, junior high or the first grade of high school without the help I was given. I had several of them, but the one I remember the most is Ms. Darch. Thank goodness for her, she made my school days so lovely. At home, I was taught to believe that it wasn’t just my body that was wrong, it was my mind, too.

I’ve carried this around for a very long time and I’m tired of disliking myself because of the way my body looks or the way that my mind works. I’m sick of not looking at myself as I pass by a mirror or dismissing myself. I don’t want to talk myself down anymore when it isn’t my voice that’s doing it. The disability and disease that I live with have so much to do with how I perceive myself and though I’m confident in my abilities, skills, creativity, work ability, empathy and drive, I’m tired of looking at myself in the mirror and hearing the internal critic come to life with all kinds of things that it wants me to hear.  

Don’t worry, I love myself because everyone needs and deserves self-love. I just want to like myself more. Loving yourself it easy, it’s liking who you are that’s harder for me to do. I know almost all of who I am and who I have been. I want to like who I am becoming. My focus for 2026 is liking myself not just for my mind and spirit. I have to like my body, too. It’s a force to be reckoned with and it is stronger than I know.

The words I’m going to focus on for the coming year are like and love. Every day will be a chance for me to remember that all of me is worthy of loving and liking myself, not just parts of it.   

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The Labyrinth of Me

Posted on November 27, 2025 by Jamieson Wolf
The cover for MINOTAUR by Jamieson Wolf. It shows a shadowed figure standing in front of a labyrinth of green walls.

I had a Multiple Sclerosis flare up recently. It started with a back spasm during the day one afternoon that left me in a lot of pain. It was all downhill from there.

I knew that something was wrong the moment I got out of bed the next day. I was reminded of that moment all the way back in December of 2012 when I had no control over my body. For a moment, I was back there in the basement apartment when the MS first hit. I pushed through it like I normally do, not wanting to be controlled by my body.

I was able to make it through the hallway by holding onto the doorframes. I made my way to the bathtub for my shower by holding onto the toilet and cabinets. I held onto the walls in order to get in and let the water calm me. I kept repeating to myself: “I’m okay, this is okay. I’m okay, this is okay. I got this, I’m okay.”

When I washed, I had to hold onto the walls of the shower, the words repeating over in my head. I’m not sure how I was able to dry myself without falling over. When I brushed my teeth, I sat on the toilet because I was too weak to stand. My head was swimming with fog; every time it moved, I would feel the fog slosh in my head as if it were some kind of tracer.

It took me fifteen minutes to dress myself, gradually pulling on my socks, pants, shirt and sweater and I fell against the bed several times, thankful that it was there. Still, it was only when I was walking down the hallway that I finally considered calling in sick to work. There was no way that I could work like this. My body needed to rest.

I ended up taking three days off work and that gave me five days of rest time. I’m getting better at giving my body the rest that it needs, but it’s still an annoyance. I know that I must listen to my body, but I don’t have to be happy about it.

At the same time as this was happening, I was launching my new novel, MINOTAUR. The main character is a young woman named Roanne who has lived in a labyrinth for all her seventeen years and has never seen the outside world. She lives in fear of the Minotaur, that mythical beast of Greek mythology. She has no idea when the Minotaur will strike but lives in fear of the beast and the havoc it will bring. She is also disabled and walks with a cane.

I was asked recently what inspired the novel and you can see that interview HERE. However, I just realized that there is an even deeper thread that runs underneath. It was always my intention for Roanne to be disabled. When she popped into my mind, I knew that she walked with a cane. In the first draft of the book, I didn’t reveal this until the middle of the novel. When I did the second and third drafts, I made her disability more apparent. There was no reason for me to hide the fact that she walked with a mobility aid.

When I was launching MINOTAUR into the world, I was trying to find my way through my own labyrinth. That’s what MS is. I had to try and work with my body without knowing what it would do. I could make my way to my desk, even if I did have trouble choosing the right words to type. I would take a lot of naps and rest, reading when I was tired of sleeping for little bits at a time. I tried to focus on balancing the promotional stuff against what my body could do. My fatigue levels flowed and moved like waves. I had difficulty speaking and sometimes I had to will my fingers to type the right letters.

Since the flare up, I’ve found myself more fatigued than usual and my legs and body have been filled with pain. My leg muscles haven’t completely recovered or loosened. My brain fog is awful, and I have been trying to put the spices away in the fridge, the plastic wrap in the dishwasher or the parchment paper in the freezer. I know where these things go, I’ve done it countless times, but my body has been re-routed. I don’t know where my body is going or how I help my body find its way out of the dark.

I’ve learned to be gentle with myself, even if my temper does flare up. Thankfully, I know that I am not alone and that there is light in the darkness, just as there was for Roanne. There is hope even in the darkness and we don’t know where we are going. That’s one of the themes of MINOTAUR and it’s one of mine.

There is hope in the dark and joy if I’m willing to go looking for it.

You can find MINOTAUR HERE.

Posted in Brain Fog, Fatique, Flare Up, MINOTAUR, Rebel Satori Press | Tagged , , , , , , , , , , , , , , | Leave a comment

Levels and Lymphocytes

Posted on September 30, 2025 by Jamieson Wolf

I feel like my life has been on hold lately.

I’m waiting for a fourth round of Mavenclad. It should be my final round of the medication. I’m waiting for my lymphocytes to get to 0.8 and there is no telling when that may happen. Before my third round, it took almost a year for my blood levels to go back up again so that my body was strong enough to handle a new round.

Since I’m on the third round, I’m only having my blood tested every three months instead of every month, so there’s a lot of guesswork involved. I don’t want to over commit myself to anything in case my blood levels are at the right levels and I have to start my final round. I’ve been waiting and hoping.

I also have to be careful when they are lower, too. I’m susceptible to everything. Mavenclad eradicates my immune system. I have little to protect myself until my red and white levels are higher and my lymphocytes are at a good level.

Well, my lymphocyte levels have gone from a four to a five! This makes me happy for a couple of reasons. It means that, since the next time I get tested is in December, I won’t be starting my fourth round of Mavenclad until the new year. It means that I can go out and about gently as long as I’m careful and balance work with rest.

Also, it means that I’m getting better and that all the work I have done and have been doing (diet, exercise, meditation, therapy) is working. I know that the blood decides in its own time when it wants to heal, but I’d like to think that all of the things that I’m doing are making some kind of difference.

That’s how I roll.

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The Impossible Mountain

Posted on July 17, 2025 by Jamieson Wolf

It’s not often that I’m made to feel disabled.

Objectively, I know I’m disabled. I was born with spastic cerebral palsy and I have relapse and remitting multiple sclerosis. Despite that, or because of the disabilities that I live with, I do a heck of a lot. I exercise, I walk, I swim. I paint, I write, I create. I’ve stopped trying to do things to prove to myself that I’m not disabled. Instead, I’m living my life and embracing my passions to prove to myself that I can do anything I want to do, regardless of the disabilities that I live with.

Sometimes though, there are reminders that come along to remind me there are certain boundaries and walls placed in front of me. I must decide how I’m going to surmount them or if the mountain in front of me is worth climbing or finding a way around it.

One of my paintings is hanging in a café as part of an exhibition. I’m honoured and so very proud to have something I created hanging on the walls of the café. I’ve been wanting to go and see the painting in the café for some time now and that was my focus for yesterday. I wanted to go and have a cup of coffee, surrounded by the beautiful art that is all part of the exhibition.

Instead, I was met with a mountain.

Well, it felt like a mountain when it was three stairs. I stood there starting at these steps trying to figure out how I would get up them. There was no railing nearby that I could use to pull myself up. I normally do okay with stairs as long as there is a railing. I find going up stairs challenging, but going down is worse. I find that most places are like this.

Looking at those stairs, I felt small and unseen.

As I stood there trying to figure out my path forward, a woman asked me if I needed help. “You can be my good deed for the day!”

I let her help me up the stairs while at the same time, I tried not to be offended. She said this with a huge smile and while I was glad for the help, I didn’t want to be anyone’s good deed. She could have just helped me without saying that I was a good deed. That made me feel dirty, as if her act of kindness had an ulterior motive.

Inside the café, there were more stairs that I had to get around, but these were manageable because I was able to support myself with the walls. I found my painting and it looked gorgeous surrounded by all the other beautiful art. I got myself a cold brew coffee and a banana brownie and sat at a table. I should have felt overjoyed at seeing my art on the walls of a café, but I didn’t feel joy at that moment. I just felt hollow, sad and unseen. When I set out to go to the café, I hadn’t expected to be met with an accessibility issue. I was able to take a couple of photos of my painting and knew that I wanted to go home. I was too upset to enjoy the coffee or the brownie.

I was able to make my way down the stairs at the entrance of the café by using the door as a support. I held on to the door with one hand and my cane in the other. I went home and realized that I was angry. It’s been a bit since I’ve been made to feel less then and as the day went on, I found myself getting angrier. I decided to paint in order to change the narrative of anger that ran through me and eventually, I chose to write a short message to the café, letting them know how I felt. What good is it to have a voice if I don’t use it to speak up and speak out?

I decided to write to the café and tell them what it was like for me to visit their establishment as a disabled person. I thought I would never hear back from them, I always assume the worst. However, I heard back from them this morning. In the message, the said that they heard me loud and clear, and that they would be seeing what they could do to make sure that the space is accessible for everyone.

I learned a few things during this whole experience. I learned not to sit and hold on to anger, that I have a voice, so I need to use it if I see an issue. Don’t respond in anger, that never solves anything. I’m glad that I took the time to paint something beautiful, using a negative situation as the impetus.

Ultimately, I used my voice to try and right a wrong and that has to count for something.  

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The Able Body and the Mountain Within

Posted on July 5, 2025 by Jamieson Wolf
I saw this on my walk and it struck me that the same person was walking in two different directions.

When my journey with multiple sclerosis first began, I couldn’t wait to walk without a cane.

After being bedridden for over a month, I willed myself to walk again through sheer will and stubbornness. I knew at the time that I needed the cane; I couldn’t walk at all without it. At that time, it wasn’t a simple journey. I was waging war against my body and what it had taken from me. Every moment was spent on getting well enough to walk without that cane. To me, that would signify that, at least temporarily, I had beaten my disease.

There were a lot of setbacks. Stairs were my kryptonite (and they still are). There were things that I had done without thinking about that I’d had to learn to force my body to do. I found bumpy ground and slants of any kind difficult to make my way over (and they still present an issue for me). Still, I persevered and conquered the flat mountain. I learned to walk again with a cane and then, when I felt strong enough, I was able to walk without one.

I walked with a cane every winter if I was out on my own. It was safer with the cane then without during the season of ice and snow. When winter hit, the cane offered me protection I needed and assurance that I would be able to make my way with safety. It felt like a good trade off: walk without the cane for Spring, Summer and Fall, but keep it close when Winter came. This has worked well for the twelve years since my MS made its presence known within my body.

Lately, I’ve been taking the cane out with me when I go for my walks. My balance has been off and there have been quite a few times when I go to take a step forward and really must think hard to make my body move my foot. It’s like my body knows what it needs to do having done this without thought for so long, it just needs a little bit more persuasion. This is happening with increasing regularity lately. There is also the increase of pain and muscle spasms. By the end of the day, I’m walking on stilts made of stone, hobbling as I try to do the simplest things. I’ve been tripping over my own feet a lot and all of this has been a source of frustration for me.

It’s been a constant worry in the back of my head, this new need for having my cane nearby. I had done everything I could to walk without one, thinking that this was a sign of how far I had come in my battle. I began to hate my cane a little bit, viewing it as a sign of weakness, even though I know that mobility aids have nothing to do with weakness and everything to do with strength. I know this, but I didn’t believe that way of thinking applied to me.

Until today.

I went out for a walk this morning. I hesitated to go out as it was supposed to rain. I’m never able to walk with my cane and my umbrella at the same time. I have a Hurry Cane, so I was able to collapse it and keep it in my bag so that I could walk with my umbrella hooked around my arm. This served me well for most of the walk, but I’m not able to walk very fast, having to make my way over cracked sidewalks and roads. I try to plan where I will put my next step. I felt less sure of my path without my cane, and I should have taken it out regardless of my umbrella. I know this, but I was being stubborn.

Despite the difficulty that I was having with walking, I kept my cane in my bag. I cut my walk short because I was in a lot of pain and still, I kept my cane in my bag. I chose the wrong path home and ended up having to go up a large hill to get into my building and still I kept my cane in my bag. The way up the hill was so slow and what should have taken a minute of two took me ten minutes, one step after another until I gratefully reached the top.

Making my way through the garage, I tried to make my way up over a slanted part of pavement and my body stopped me. I kept trying to go over the hump in the pavement and was about to fall backwards when I forced my feet to work, keeping them moving so that I wouldn’t fall. I let out a guttural cry and it took me a moment to realize that I had been the one to make the sound. I stood there on the flat pavement and looked back at the mountain that I had overcome and knew that my journey had changed again.

I made it to my apartment, and I took my cane out of my bag and clicked it together. I looked at it and knew that I would never again go out alone without it by my side. I sat there looking at my cane, this symbol of my disabilities, and I felt a moment of sadness. I felt like such a failure, dealing with a body that was slowly turning against me. I thought of that moment when I had first walked in the mall without my cane. It felt like a delicious kind of freedom, almost as if I was flying.  Staring at my cane this afternoon, it felt like my wings had been clipped.

I know what’s going on here. I’m being asked to confront my own ableism. I know that walking with any kind of mobility aid is like being given license to fly. I know that my cane allows me to walk and gives me the security and safety. I know this, even more now. I must get over the fact that it’s a sign of weakness and let go of the notion that I’m a failure because I have to walk with my cane more often than not now.

I have an issue with appearing disabled. I don’t like walking with such an obvious sign of being disabled. There’s a dark part of my mind that views this as sign of my weakness.

I know that I’m strong and I need to remember that I am stronger and better able to take care of myself when I walk with my cane. I know that letting go of my own ableism will take time and that I will have to think of my cane as an enhancement instead of diminishing myself somehow.

This is part of my journey, and I have to stop looking at my multiple sclerosis and cerebral palsy as something to be beaten into submission. This is my life, and I can’t spend so much of it in battle mode. I will miss the small joys that life has to offer.

 I will make my way forwards, two steps at a time and I will fucking sparkle, my cane leading my way like the purple arc of a rainbow. It’s a symbol of how far I’ve come and how far I will go. I no longer want to feel like I’m going in two directions at once. I just have to make my way forward, no matter what the path in front of me looks like.

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A Maven Clad In Raven’s Clothes

Posted on April 12, 2025 by Jamieson Wolf

A few years ago, I had an appointment with my neurologist.

The results of my latest MRI had shown new lesions in my brain, meaning that the multiple sclerosis was progressing. It was odd looking at my brain. What had once been a galaxy of bright shining stars was now a world of grey clouds where the lesions had once been. Tucked down at the edge of the MRI results was a single new lesion, looking impossibly bright in the haze of grey.

My neurologist was pretty much dismissive that night. “We’re going to change your medication,” they said. “Here’s a pamphlet about Mavenclad. It’s a smart drug. It will go boom boom, and then you’re done.”

“What’s involved in the boom booms?” I asked, hoping for a bit more information than simply boom boom.

“It will destroy your immune system so that when it grows back, it will do so without the lesions that cause your MS. You just have to do two doses and that’s it for the rest of your life.”

It sounded like a viable plan, until I flipped through the booklet she had given me. On the first page, there was a list of side effects that the drug caused. The first one on the list was cancer, followed by hepatitis A and B, shingles and tuberculosis. “I don’t know if I want to take a drug that could cause cancer,” I said.

They waved a hand to push my words away. “Probably one person out of a thousand people developed cancer, so they had to put that there. Don’t pay it any mind. What’s important is that after two rounds of Mavenclad, you’re done. In two years, you will be done and that’s it.”

I trusted my neurologist, so I said that we’d go ahead with it. Both my husband Michael and I were comfortable with the decision, even if the drug did cause a list of different side effect. I had been booked in to have my tuberculosis and shingles vaccine. I would need to have those done before I started taking the Mavenclad.

I had to have all sorts of bloodwork before I could begin taking Mavenclad. I had to be vaccinated for shingles, hepatitis A and B because Mavenclad could cause all of those. I had to be HIV negative which I am, but the HIV drugs interact badly with Mavenclad. We made appointments for bloodwork and vaccines, and I sat in my neurologists office thinking of all the things that I wasn’t told. If I needed all of this preparation to go on the drug, chances were that it was a lot bigger of a deal than they were letting on. I had difficulty remembering the name and so made up a rhyme for myself (look at the title of this post).

I called my mom on the way home to let her know that my medication would be switching from Aubagio to Mavenclad. “The doctor called it a very smart drug.” I said, knowing that I was trying to comfort myself, too. I tried to sound upbeat about a new medication. This was just a step on my journey after all.

She called me back a few minutes later. “Do you know what this drug is, Wonder Son?”

I told her that no, I didn’t. My neurologist hadn’t told me everything about Mavenclad. I knew this. I had to believe that my neurologist had my best interests at heart.

“It’s chemotherapy. It’s normally used to treat lymph note cancer and other forms of the disease. They only just started using it to treat MS.”

You could have knocked me over with a feather. I was shocked, but I wasn’t, not really. My multiple sclerosis had progressed, so I knew that as soon as I saw the new lesion that I would be put onto a new medication.

When I googled Mavenclad, I learned that it was indeed normally used to treat lymphoma cancers. Websites also advised against touching the pill with bare skin as the medication was cytotoxic or toxic to living cells. There was whole host of side effects that my neurologist hadn’t told me about. Still, I figured that after two years, my treatment would be done, and I wouldn’t have to worry about taking a drug to supress my MS anymore.

When the Mavenclad pills arrived, they came by courier in a medical box. It had a big caution sign and a red cross on the side of the box. This didn’t make me feel very comfortable about taking the Mavenclad, but I assumed that my neurologist was thinking about my health. They wanted the MS gone from my body as much as I did. While I knew that Mavenclad wasn’t a cure, there is no cure for MS, maybe the drug would help me live my best life possible.

I started the pills almost right away. I had to wear gloves to handle the pills, wash down any surface the pills touched and be careful with bodily fluids as they weren’t sure what the Mavenclad would do to my husband. I was advised to wear protection during intercourse because they weren’t sure how Mavenclad would affect my husband. It seemed like an insurmountable mountain that I was being asked to take into my body. I had done a bit of research about what the pills would do to my body, and I knew that they would affect me for months after taking them. I was reminded of the Greek God Atlas, made to carry the world on his back. I would be the same, but I was being asked to carry a world inside of me.

The first week was all right, but I was nauseas throughout. The week after was terrible and I ended up having to take time off work. I was dizzy and felt sick all the time. I had balance issues and then I began to lose my hair. I looked at my hair in the mirror and noticed that it had begun to thin and go patchy in some places. It took longer to grow, too. I shaved my head bald and my eyebrows, too, after a little square patch had fallen out of my left eyebrow.

After the second week of pills five weeks later, the nausea got worse, and I could not look at my phone or Kindle in a moving car or I would get sick. I got sick a lot anyways and didn’t have much of an appetite for food. I got better with time, and I did my bloodwork every month to see where my red blood cell count was at. When it reached the right levels, I would start the next round. That year, with my immune system crashing, my husband and I spent Christmas and the holidays on our own. I was too afraid to be around people and leave myself vulnerable to illness.

I basically became a shut in. I went out for a walk every day, but I did what I could to be completely away from people as my immune system decreased. I remember friends during those first two rounds of treatment. One told me that I shouldn’t be afraid, that I had to live regardless of what happened. Another let me talk to her mother who had been through different kinds of chemo treatment, and she advised me to do what I was comfortable doing. It was my health and my journey and no one else’s.

That wasn’t entirely true, though. There are so many people who have been with me since the beginning of the treatment, like my beautiful husband, my parents, family and friends. I think a thing like chemo, or any kind of medical treatment, is not just your journey. It’s the journey of hundreds of people that are right along with the treatment with you. I’ve learned that along the way. It’s my journey, yes, but I do not go on my journey alone. Though I sometimes feel like I’m living on an island, there are always hands to reach out and hold me. My loved ones make sure that I don’t feel alone for too long.

After my second dose of Mavenclad, my neurologist thought that I would benefit from a third round of chemo. “I thought you said that after two rounds I would be done.” I said, trying not to let the panic enter my voice. I had to be brave to face this, I told myself. I remember sharing a look with my husband. His gaze asked me to give him my fear.

“Your neurofilament light chain test came back with a six percent. That means that the MS is only six percent active in your body. I think we can stamp it out and finally stop it if you do another round.”

The idea of no more lesions and the possibility of fewer symptoms was a strong lure. I agreed to a third round of medication and thought that was the end and the last time that I would have to take it again. I recently finished my third round, and the side effects were awful, and I had to limit my interactions with other people again, but I would finally be finished. I was weak and tired and didn’t have a lot of energy. My immune system was shutting down again, but I would be done.

Except I wasn’t. I love how life sometimes throws a curveball when we least expect it.

During my last appointment with my neurologist, we did the normal tests to check that I could feel touch and that I hadn’t lost feeling in the bottoms of my feet or the palms of my hands. She checked my eyesight and went over the medications that I was on. We talked about my general health and whether or not I’d had any bladder infections. We talked about what I was doing to stay active and I told her about the workouts I do three times a week, the swimming I do at least twice a week, my daily walks.

She told me that she loved my positivity. I knew that the appointment had about ten minutes or so left, so I figured she was winding things down. Then she told me that I would be doing a fourth round of Mavenclad.

I had a million questions fall from my tongue never to be spoken. “But I thought you said I would be done after three rounds. You said that no one had ever done a third round. I had to get special permission from my insurance. Why am I doing a fourth round?”

The desperation I felt in that moment was everything. They said that had never been the case, that Mavenclad was actually given in two cycles of two rounds each. I told her that she had said two rounds, and I was done, then we got permission to do a third round. “That’s what you said.” I told her. I looked at my beautiful husband and he nodded.

“Why are we going for a fourth round when we don’t even know if the third round worked?” Michael asked.

“I can send you down for a neurofilament light chain test after the appointment and then we’ll know for sure if the medication did it’s job.” My neurologist said.

That didn’t do anything to answer mine or Michael’s questions. We went for the light chain test and the other bloodwork and went home. As we drove home, we tried to find the right words within the confusion. Michael pointed out that another round might not be such a bad idea. I remember nodding and took comfort from his words. He squeezed my hand, and I looked at him, took in the worry etched on his face and I knew that I had put it there, however indirectly. He was worried for me.

On the way home, I tried to find hope amongst the worry. I wondered why my neurologist was prescribing a treatment without knowing what the results were. I decided to do what research I could and went to the Mavenclad website. I noticed a few things. The first thing that had popped up when I did my web search was Mavenclad was chemo and it was used to treat lymphoma cancer. That had been removed as if the information had never been.

I went to the Mavenclad website and started reading their information. The drug had changed since I had started it. Now they were saying that 89% of people had positive results when they did two cycles consisting of four doses of the medication. At least now I knew where my neurologist was getting their information. I just wish they had shared that information with me. I was still filled with uncertainty.

I didn’t know what to expect, but that was par for the journey I had been on with Mavenclad so far. I hadn’t been given all the information I needed and so I found my own. I spoke with my husband, with my parents, family and friends. I let them all know that I was going on a fourth round of chemo. Each time I told someone, I became more accustomed to what was going to happen.

I knew that I could choose not to take the medication, but I had to believe that my neurologist had my best interests at heart. I had to hope that the new round of Mavenclad would be of some benefit to me. All hinged on the neurofilament light chain test results. The nurse that took my blood told me that it would take several weeks for the results to arrive, and I knew that I was in for a long wait. I tried to stay positive. I talked to my psychologist about the wait time being like a big pause button on my life and that I hated the uncertainty of it.

Thankfully, someone must have heard me because the results came in two weeks later, arriving last Monday. My neurofilament light chain test results said that my MS was only 1.09% active in my body.

I breathed a huge sigh of relief and was able to look forward at the coming adventure with hope. Even though the road has been uncertain at times, the 1.09% gives me hope that after the next round of Mavenclad in October (hopefully), my MS will be 0% active. I don’t have to believe or hope that the treatment is working; the 1.09% is proof of that.

Still though, I’m left with a feeling of the unknown. I have to hope that the next step on my journey with MS will take me further than I thought possible. It’s the light at the end of the tunnel that is motivating me to move forward, one step at a time.

We’ll see what the future brings.

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The Cyclone That Life Can Be

Posted on March 30, 2025 by Jamieson Wolf

My adventure continues.

I’ve been quiet on here lately. I was surprised to see that the last post on here was from September 2024. Surely it can’t have been that long?

The world just seems too big sometimes, does anyone else feel like that? There has been so much turmoil in the world, and I’ve been trying so hard to focus on positivity that I forgot it’s okay to turn towards the shadows, there is nothing wrong with the mist or the fog. Sometimes, it takes not knowing what is going to happen that leads me to find a direction.

I also need to find a different focus for this blog. I don’t want to turn away from my journey with Cerebral Palsy and Multiple Sclerosis, that’s what this blog is about. It’s primarily about my disabilities, but I want to talk about more than that. I want this blog to be a place where I can talk about everything, I do for myself. If there is anything that I’ve done that honours my body and my journey, I want to write about it here.

I want to talk about my journey with food and the places that eating and MS have led me. I have so much to say about the benefits of acupuncture and reiki, exercise and video games and the difference positivity makes for me. I have wanted to broaden the focus of the blog for a while now. I want to talk about my struggles with body positivity and self image. My MS and CP are all tied up with that, too.

In what feels like forever ago now, a book inspired by this blog was supposed to be published. The publisher went bankrupt before my book was published and at the time, I was heartbroken. I walked away from this blog then. The book deal, the memoir I had written, and this blog felt too intertwined with each other. It took me a while to unravel the red thread that connected all three.

I started writing One Step at a Time after a bit of time had passed and it appeared that I had more to say about what it was like to live with Cerebral Palsy. I wrote about my issues dealing with a disability in an able-bodied world. This blog gave me a place to go when I need to have a voice. Then two things happened close together.

A few years after I started writing Once Step at a Time once more, my apartment was broken into. I had quite a bit taken, but the one that cut the most was that they took my laptop. My memory key that contained all my writing was in the drive. I’d left it there when I usually took all my writing with me everywhere, I never left it at home. I did that day. I’ve often wondered if someone found that thumb drive and looked at what was in it. I do hope that if someone didn’t just throw it out and that they looked within, they saw something that brought them joy.

Shortly after my apartment was broken into, I woke with what would later be diagnosed as Relapse Remitting Multiple Sclerosis. It changed my life and the way I live it. This blog became Two Steps at a Time. I wanted to write about my journey again and try to find my place in it. I had to find my marker in the path, you know? Writing has always brought me a comfort that nothing else can. I am most myself when I am in front of the computer writing. Like a lot of writers, I write because I have an almost constant need to explore the world that I carry within.

My memoir (also called Once Step at a Time) is lost to me. I’ve looked in all the files I can but can’t find any copy of that memoir. Despite that, I know that I still have a voice. I’ve survived so much in my life. I was born with a disability that should have killed me, only to fight again when a disease came to life within my blood. I’ve had to find a different way to do things and when the MS hit, I had to learn to speak, walk, type and live once more. I can’t turn away from everything that I’ve done to live my best life as I make my way forward.

I can’t turn away from myself and I’ve been taking steps to make sense of where I am within the world. I must keep trying to find my place within the cyclone that life can be. In all of this, I am most thankful for my husband. He has been the anchor that I always find myself drawn to. He brings balance when there isn’t any and he’s able to gently guide me through the storm that sometimes rages and make sure that I’m able to see the sun.

I’ve had to find a way back to myself. Writing this blog is part of that. I’m going to write about everything I’ve been doing to find a pathway living with Cerebral Palsy and Multiple Sclerosis. I know that the best way to start a new journey is to say hello and then see where that will take me.

I hope that you can forgive the silence.

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A Personal Victory!

Posted on September 25, 2024 by Jamieson Wolf

I had a personal victory today.

My body is at its worst in the mornings. For almost a year, I’ve been having issues getting dressed. My left leg is fine and I’m able to put it in my pantleg with no issues. My right leg has been giving me problems. I can lift it, but I can’t move it; my brain and leg muscles just ignore the command. I must reach over with my left hand and try to pull my right leg towards the pantleg and sort of slide my foot in.

When I first noticed this, I tried to put pants on in a variety of different ways, but my right leg would have none of it. I always had to reach out for my right leg and guide it no matter what I did.

I feel like my body has been a battleground lately. Since the flare up a few weeks ago, the symptoms I live with have been a lot more present than usual. When I walk, I can’t pick up my feet very well or at all. There are a couple of times that I’ve almost fallen and lost my balance in the shower. I’ve begun to walk with a cane when I out alone, just in case. The spasms and pain levels are down, thanks to the reiki and acupuncture, but they are still there. My exhaustion and fatigue levels have been ever present and some days, they feel so much heavier, it’s all I can do to get dressed.

Acupuncture, reiki, swimming and exercise are helping me to stay mobile and keep my pain levels down, but they can only do so much. Every little thing I do for myself, and my body helps, but there are always going to be issues that I’m dealing with. It’s just a fact of life for me. Despite all of that, there is joy.

Such as my personal victory: I was able to move my right leg into my jeans without any thought. I didn’t have to reach out and pull my leg over, I didn’t have that moment where I felt like I wouldn’t be able to move my leg at all while I waited for my morning brain to reset.

Today, I was able to move my leg in a way I haven’t been able to for a year and that brings me so much joy indeed.

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The Language of Smiles

Posted on August 24, 2024 by Jamieson Wolf

The thing is, I know I’m disabled.

I mean, I just turned forty-six, so I’ve been disabled for a long time, and I live with it every day. There are times where the act of doing something takes time, or it takes me figuring out how to do it, but I usually get it done; and sometimes, I ask for help, but that doesn’t happen very often. Among other things, I was born stubborn.

Case in point. I went out for a walk today. Now, I wasn’t feeling well earlier this week and have just gotten through a multiple sclerosis flare up, but I was tired of spending time indoors. I’ve been doing a lot of that, these days. I love my home and the art that I’ve covered the walls with, but sometimes I need other people and the joy that only fresh air can bring.

As I was walking towards Beechwood, the thought occurred to me that I really should have brought my cane, however I’ve taken this walk before so I didn’t bother to head back to the apartment. It was a beautiful day today and I wanted to be out in it, letting the sunshine down on me.

I was more tired than I had realized, fatigue is like that. It can just hide when it wants to and then peek out its face and say hello. This happens all the time and it’s the symptom that I deal with the most. Brain fog usually isn’t too far behind the fatigue, but the sunshine was helping to keep him at bay. I was happy to take my time walking, snapping pictures of the flowers I saw and keeping an eye out for cracks in the sidewalks.

The sidewalks in Ottawa are terrible, and I often found myself stopping and looking at my feet so that I could find my way in safety. On my walk, there was an older woman waling in the bike lane. I figured that she had hopped off the sidewalk and went into the bike lane to get around me. This happens a lot. However, the woman kept waling in the bike lane and until she turned, we were walking at the same pace.

She saw me walking and gave me a smile. I gave one back to her and she motioned for me to move into the lane with her. I realized that she was walking in the bike lane as it had a smoother more even terrain than the sidewalks that we were supposed to be walking on. I stayed on the sidewalk though. Even with the rough conditions, I felt safer on the sidewalk than in the road. I could only imagine what would happen if I fell near cars.

I stopped at Books on Beechwood. It had my destination all along. There is nothing so comforting as a bookstore or library and there are so many friends to meet within the pages of the books on the shelves. I chose a book that caught my eyes (After Oz by Gordon McAlpine) and went to the cash. There was one woman being helped and there was another woman working at the front cash. I handed her the book and started telling her that I was on the points program.

She shook her head and said: “I’m sorry, I’m deaf.”

I took off my mask so that she could read my lips. She shook her head, still not understanding, so I just smiled at her and waited for the gentleman to be free. The woman was wearing a mask so I could not see if she smiled back, but I did see her eyes crinkle as if in a grin.

I’d like to think that the smiles we share are each other are one of the ways that we can speak to someone’s spirit, even without the use of words. I was lucky enough to share a smile with two people dealing with their own physical issues and doing what they needed to do regardless of what tried to hold them back. I was reflecting how amazing it was that Books on Beechwood employs a disabled person as I began the trek back home.

I was having more difficulty with the Beechwood sidewalks. I kept tripping and losing my balance and my footing. I took my time again but couldn’t pick up my feet, so this made things more difficult. An older gentleman approached me, and he pointed and muttered something. I thought he was asking to get by, so I moved aside.

“Pick up your feet!” He said.

“I can’t.” I told him.

As he made his way by me, I heard him utter “Just lazy…”

‘I’m not lazy,” I said to him. “I’m disabled. Have a nice day.”

There was a time where I would not have said anything, but I tend to speak up and speak back now. I hope that this man, whomever he was, took a moment in thought and realized that maybe just because someone isn’t walking with a cane or mobility device doesn’t mean that they aren’t living with a disability.

I also learned something. I normally only walk with a cane in the winter when it’s paramount to my safety in our winter conditions. I’ve realized that I must walk with a cane at all times when I’m out on my own so that I don’t to worry so much about how I’m going to get to where I need to go. There is no shame in walking with a mobility device if I’m on my own.

As I made my way back home, I tried to think of the people that I had shared a moment with because we smiled at each other. We been able to share something without a word because we understood.

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A Dance with the Waves

Posted on October 27, 2023 by Jamieson Wolf

A neighbour gave me a gentle telling off today.

For the past three weeks, I’ve been going through a multiple sclerosis flare up. I thought I was just tired at first and suffering from burn out. Then that tiredness became exhaustion. I booked a couple of days off work and was looking forward to getting some much-needed rest. When I woke up on the next day, the fatigue has increased. I had slept for over eight hours, but it was as if I hadn’t slept at all.

The brain fog came rolling through my mind like smoke, but this one was different. It felt like it was taking my mind from me, but that I could see it through a cloud of vapour. It would hover just out of reach the more I tried to reach for it. The only way that I could observe my thoughts was to stop reaching and let them come to me.

It was as if my whole body was stoned all the time. I ended up taking a week off work, unable to find my way through this heavy blanket that covered my body and my mind. I started taking Tarazodone for sleeping again and I haven’t had to take that medication for a while now. The insomnia that can sometimes be my companion hasn’t been around. My reason for taking it was to make sure I slept, that my sleep was deep and healing.

Though the Tarazodone made sure I slept, the flare up has yet to go away. It’s different every day, much like my multiple sclerosis. At night, my body is at war with itself as the multiple sclerosis and the cerebral palsy battle it out to see who the supreme ruler can be. I wake with pain even more than usual, but that’s the least of my worries right now.

It’s been ten years since I was diagnosed with relapse and remitting multiple sclerosis and thought I’ve had new lesions; I’ve never had a flare up. That’s a sign of the care that I take of myself, or it’s just luck. Either way, I was hoping that the flare up would be over in a couple of days. It has now stretched on for three weeks.

I’ve had to learn how to balance myself. For the first week, I dealt with my brain fog and fatigue as well as dizziness, balance issues as well as nausea. I was reminded of all those years ago in 2013 when I lost control of my body. I had to learn to speak, walk, type and function all over again. I figured that if I could do it ten years ago, I would do it now.

I’ve been trying to heal by doing the things I love to do. I love my job and my work brings me a lot of satisfaction. I love to write and lose myself in the words I write. I also love to paint and look forward to seeing if I can get what I see in my mind to work upon the canvas. I’ve had to balance what I love. Some days, I’ve been able to work, but then can’t accomplish anything in the afternoon or evenings and others I can. I fit in the writing and the painting when my body is able and my mind is clear and I can handle movement or remain still.

Every day has been different. Some days I’m clearer headed, and my mind feels more my own again. Other days, my body feels stronger, and the fatigue is father away. There are days that I can push through like I always have and I’m able to reach within my mind and part the intense fog, or I can see through the cloud vapors. Everything isn’t completely clear, but it’s clearer, if that makes any sense. Last week, I was able to clean the bathroom, but I couldn’t remember names or places I had been. I went back to work two weeks ago, and my mind has been present, but my body has been rebelling against me.

Wednesday was the worst day that I’ve had with the MS flare up so far. It got progressively worse throughout the day. I had difficulty speaking, that was the first clue something was up. I had to think of the words I wanted to say and then gently push them out of my mouth, as if they were shy to be out and about in public. When I got back from my short walk in the morning, the fatigue slammed into me even harder than before. My head was swimming and indeed, it felt like my whole body was underwater.

I took a very short nap in the afternoon, but the fatigue wouldn’t dissipate. It was all consuming and I wondered how my body could hold a tsunami of emotions and such crushing fatigue. The tiredness took everything from me. If I stayed completely still, I was fine, but the moment I introduced any movement, my body was taken by the waves. I had a difficult time holding on. I was able finish the workday by pushing myself. One more hour, I kept saying, thirty minutes, ten minutes, five minutes, done. When I made it to the end of the workday, I had nothing left to give. I didn’t even have the energy to make something to eat for dinner.

Thankfully, my beautiful husband got takeout for dinner. I could barely finish my meal, but I ate everything I could. I was able to read for a bit, but when the words began swimming across the page, I just put the book down. I wanted to take a bath, but I didn’t trust myself to get in and out of the bathtub. It also involved too much movement. There would be no way I would get any enjoyment out of it.

I knew that I should have logged off during the workday and let my body rest, but I’m so used to pushing through and moving forward. It’s what got me through 2013 and in my mind, I had engaged in battle. I would win this battle and fight the good fight. Multiple Sclerosis has taken so much from me, I would not let it take everything. So, instead of letting myself heal, I pushed my body beyond what it was capable of because I was being stubborn and headstrong.

I had taken everything I had taught myself about balance and thrown it away. In the end, my body shut down and took everything from me anyways because I had pushed it too far. I did not respect what my body could do in that moment. Throughout the last three weeks, I’ve had to listen to my body and in that moment, I didn’t want to listen anymore until my body gave me no choice but to listen. I was wrapped in a cocoon of water and fog and even though my physical body was still, the body within danced with the waves.

Even so, after all of that I returned to work on Thursday. When I went out for my walk in the morning, I saw my neighbour. She’s always lovely and I know that she works as a personal care worker. She asked me how I was. When I took a moment to say that I was all right, she gave me the look and asked me how I was really feeling. I took a deep breath and told her all about the flare up, what I had been going through and the curveball that life had thrown me.

When I was done, her intense look deepened. “You have to stop that,” she said. “You need to listen to your body. It’s one thing to offer the people around you the support and kindness they need in moments of like this, but why would you deny that to yourself?” Her gaze softened. “There is only one of you and you have to take care of you.”

I thanked her for her words and have been thinking of them since. They struck a chord within me. I think I was pushing my body past what it could do because I didn’t want to admit that I was weak. In reality, giving in to the need to rest would have been a sign of strength by choosing myself and giving my body the time it needed to heal. There is nothing weak with choosing me, and it took a friends kind words to see that.

I’ve been wired this way for a long time. My father used to yell at me when I couldn’t do something on the first try and kept saying that I had to give 110 percent. He didn’t take kindly when I told him there was no such thing. However, after so many years living with that mentality, that kind of attitude is hardwired within me. I’ve done a lot of work with a therapist to try and let go of the need to push myself, but some habits are hard to break.

With the flare up, I’ve gone from working out three times a week, swimming three times a week, painting and writing and working full time to having everything on a standstill until my body tells me what I can do. I’m not working out of swimming due to the vertigo and balance issues and I’m painting and writing when I have the energy and the brain power. Perhaps pushing through on Wednesday and Thursday was my own was of rebelling against the MS and the waves of the flare up.

I have to realize that part of self care and self love is paying close attention to my body and honouring it when it needs rest but doing what I love when I’m able to do so. It’s been a hard lesson for me to take on, but what I’ve learned is that with healing, it’s not one step forward and three steps back. It’s always going forward, even if I’m just resting. The act of healing is done by honouring my body and learning to listen to it as closely as possible.

More than anything, I must give my body love all the time, not just when I’ve reached the point of exhaustion. There is joy in all of this, though. I’ve learned an even more valuable lesson because of this journey that I’ve been on. I’ve found joy in the small moments and the minutes where I was able to achieve stillness. Every small action of self love that I make is a step towards reclaiming me.

It’s all part of the beautiful dance with the waves within as I take on life one step at a time.

Posted in Flare Up, Multiple Sclerosis, Symptoms | Tagged , , , , , , , , , , , , , , , , , | Leave a comment