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.
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.
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.
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.
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.
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.
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!
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…
It’s been a while since I posted anything on here.
It’s hard to believe that a few months has gone by since my last post, however when I stop to think about it, it’s not that surprising. I’ve been dealing with a few things since taking Mavenclad in October of 2021, the pandemic has been challenging and I’ve been writing a lot. No excuse really except that I’ve been working hard at trying to live a full a life, despite the pandemic.
I’ve been keeping an eye on my health. I did have a recent health scare. Since taking the Mavenclad, I’ve passed out and blacked out three times. I thought it was the Mavenclad, but my neurologist isn’t sure that it’s caused by the cancer medication. They think it’s more than likely caused by something else…so basically, they don’t know what’s causing it.
I’ve had a few tests done to find out what might be causing me to pass out/black out, one of which was an endurance test where my blood pressure was examined. I also had to wear a heart monitor for two days. I still think it is being caused by the Mavenclad. I’ve never passed out or blacked out before, so what other cause could there be? Added to that, my family doctor told me that my blood pressure is really high, so there were tests done to find if that could be the cause. The high blood pressure is likely caused by all the medication that I’m on.
I have an in person appointment with my neurologist coming up at the end of this month. I’m trying to remain positive about the whole experience, but my last couple of appointments haven’t been all that great. My doctor told me that while I was on Mavenclad, all I had to be wary of was the possibility of infection; and yet the booklet they gave me about the medication had a whole list of side-effects.
They didn’t tell me what to expect after I took the medication either, but I was able to take time off from work and recover after the two rounds of Mavenclad that I took. During the appointment, there was one point where my neurologist actually mocked me. I’ve thought about not writing the last bit, but it’s the truth and my intent on writing this blog and being open about what I’m going through is to be honest with you dear reader and with myself.
My MS nurse even told me that while the Mavenclad will wipe away my immune system, there was no need for me to isolate, as long as I followed the Covid mask protocols. This from the same nurse that told me that I would have to be careful for three to four months while my immune system rebuilt itself.
After talking to my husband, and the mother of a friend who is a nurse, we decided to isolate for the duration of the treatment time. We knew that it wouldn’t be safe for me to be out and about in public safely until early February, so we made sure to stay safely isolated. It was a very different Christmas this year and, while we got to see everyone, virtual visits aren’t the same thing. Still, it was better for me to safe than sorry.
I feel like I’ve really had to be my own advocate. I think we all have to be in some way. If anything, Covid certainly has revealed the gaps in our healthcare and the care that we get from doctors and what is lacking in our health system. The MS clinic went from renewing my faith in medical science to being the reason I now distrust it. I have to take care of my own health and wellness and that includes mental and spiritual health, too. This is especially true because I’ll be going through my second round with Mavenclad this October and the whole thing starts again. Now there is one bright spot: after the second round this year, that will hopefully be it in regard to treatment.
Not quite a cure, but as close as one that I’ll get to in my lifetime. I’m thankful for that and the fact that I don’t have to take a daily needle or medication to halt the MS anymore, so that’s a plus. I’m still not sure what the Mavenclad has done to my body. I’m having a few leftover health issues, the most curious of them being that now riding in the car makes me feel sick. I’ve been told by friends that have been through chemo before that these effects can last for months after the treatment. At this rate, they will disappear right before I start my second round in October.
Either way, I’m grateful for wherever my journey takes me. There is so much in my life to be thankful for and I have to focus on that rather than the negative. I will keep being my own advocate and my own champion. I’ve got this, one day and one (or two) steps at a time.
Content Warning:Depression, Suicidal Thoughts and Self Harm
It all gets to be too much sometimes.
Like everyone else, I’ve been living in the cloud of covid. I haven’t been sleeping well, my temper is closer to the surface than ever before, and I haven’t felt like myself for a long time. A lot of that has to do with having to take Mavenclad. It’s odd to think that there is a drug in my system that is slowly eating away at my immune system.
I’ve been so focused on just getting through each day, but that’s been difficult. I’ve been using my ever-present positivity to mask my real emotions. I figured that if I just kept going, if I just pushed through, that it would be okay. This was the wrong way to go about things. With the clarity that hindsight brings, I can see that now.
My body is still trying to heal itself from the onslaught of medication that is normally used to treat leukemia. I told myself that writing all the time, painting all the time, creating non-stop was part of my therapy. Writing has always been therapeutic for me. However, there came a time about two weeks ago where the well of words that is inside of me went silent.
This was a new thing for me and it was frightening. Normally, there are thousands of words in my head, hundreds of characters waiting to have their say and tell their story. Now, when I looked inside of myself, there was nothing; there was no constant chatter, no worlds waiting to be explored. I should have been fine with that. In the past two years, I’ve written three novels and two novellas, tons of short stories and a multitude of poems. I should have been okay with the calm of the silence, but I wasn’t, no matter what I tried to tell myself.
Without the words to distract me, the sadness came. My husband and I have been trying to figure out what to do with regard to the holidays. I currently have no immune system so the likelihood of us going anywhere for the holidays or seeing family wasn’t very good. I kept trying to rationalize the thought of going out, told myself that my friends and family were being safe, that they were all right for us to be around, but I knew that this wasn’t the case.
I had taken the onus upon myself. I felt horrible about the fact that we were going to miss Christmas with our families and friends because of me. I know now that none of this was my fault, that I didn’t cause the multiple sclerosis I live with, that we were taking these precautions to keep me safe, but the more and more I tried to tell myself it would be okay, the more and more I sunk deeper into the dark forest because I knew what had to happen and what we had to do. I blamed myself for this, for denying my husband the chance to see his family. In my mind, all of this was fault. The trees from the forest sprung up around me without me having any real idea that they were there in the first place. The dark forest has become such a familiar part of my life that it almost felt comfortable, being within the leaves.
I began to have dark thoughts, some that I haven’t had in a long time. They would creep into my head when I wasn’t expecting them or when I was tired or exhausted from lack of sleep and body and brain fatigue from the MS and the Mavenclad. I thought that if I was no longer in the picture, that if I took my life, that my husband could have the Christmas that he deserved, that he could see his family. I just felt that I was causing too much trouble, that all of these changes that we were making for my safety were taking away too much from us and that it would be easier if I was no longer here.
I thought it would be better without me. I don’t think I would actually have done anything, but the fact that I was even having those kinds of thoughts in the first place should have been a warning sign for me. That way of thinking, those thoughts that would find their way into my mind, should have alerted me to the fact that I should just enjoy the silence, take a break and rest. I’ve never been very good at rest.
What with all of this in my head, it’s no wonder that I lost my temper. It happened in the simplest of ways like it normally does, over something simple. I can take the bigger life moments in stride. Money problems, losing someone, job issues, I can take those in stride. I tend to lose my temper over the little things, the times or circumstances that I can’t control. This time it happened when I was watering my plants.
My plants are my babies and part of my therapy. Taking care of them and seeing them grow because of the care I give them is a joy to me. Last week, I was trying to water my plants and wasn’t paying attention to the fatigue and the brain fog. I was trying to reach for Draco, my cactus that was given to me at my divorce party from my ex-husband. He’s up high on a shelf to keep him away from our cat Anakin. I should have listened to my body; I know that now. If I had, the rest of it might not have happened.
I had difficulty reaching for Draco but got him down and gave him some water. It was when I was trying to put him back that I had issue. I should have left him where he was, asked my husband to help me when he got home, but this was something I had done without thinking. It didn’t matter if I couldn’t do everything that I wanted to do if I could do this one thing. I got him up on the shelf but when I tried to put him back, my hand must have hooked on the plate his pot sat upon and Draco came flying off the shelf. The pot shattered on my head and Draco landed on my desk.
I became so angry. All of the anger that I had been ignoring, all of the frustration that I had been pushing down, all of the anger over the Mavenclad, the lack of information from my doctor and neurologist, the Christmas we couldn’t have, the lack of words and the silence from the well of words within me, all of this anger blew to the surface. It exploded and the only thing I could think of doing was to hurt myself, to feel something, some kind of pain. I was lost so deeply within the forest at that point and could see nothing but the burning fire of my rage.
I began to hit myself with my fists on both of my sides. I hit myself on the head and hit my sides again. I was so lost at that moment, so deep within the dark that the only way that I could feel anything was through pain. I cried out, letting out these sounds that I’ve never heard myself make before. They spoke of a deep sadness, a rage that I had been holding on to. It was sound without words and I don’t ever want to hear that sound again. Again and again I hit myself, as if to punish myself for everything that had happened. I still felt that I was to blame in some way, that I deserved what I was doing to myself.
It was only when our cat Anakin came up to me and meowed at me, rubbed his body against my legs and purred at me, begged to be picked up that I stopped. I bent down and picked Anakin up and held him close to me. He rubbed his muzzle against my jaw, licked my cheek and let me hold him, purring the entire time.
I put him down again and began cleaning up the pottery that had shattered. I gathered up Draco and apologised to him over and over and I apologized to Anakin for frightening him. I got a new pot for Draco and replanted him, hoping he would be okay. I swept up the pottery shards that I had missed, took out the vacuum and started cleaning. As I cleaned, I tried to let my mind go blank so that I could not think about anything but putting things right. With every bit of pottery that I picked up, with every bit of soil that I swept up, it was like I was picking up a part of myself that had fallen away.
After I finished cleaning and putting Draco on a new and lower shelf, I took stock of myself. The bruises had formed right away on both of my sides. The one on the left was huge and black with a blue centre and a white line that ran around that blueness. To me, it looked like water over the nights sky. The bruises on my right were smaller, but no less black. There was blood on my face from where the pottery had cut myself and where my wedding ring had cut into my skin. I cleaned up the blood and rubbed lavender oil into my bruises.
When my husband came home, I told him what had happened, and he just held me. I beat myself up for a little bit, but not for long. For some reason, there was a bit of clarity and a light that came through the leaves at that point. Normally after losing my temper like that, I would berate myself for days but for some reason I saw no point in that now. It happened, it was done and there was nothing I could do now. I couldn’t take it back. I could only move forwards and take things one day at a time. This was part of my journey and part of my story. There was no point in making myself feel horrible about what had happened.
Each day after my incident has been easier, thankfully. It’s like that burst of anger has helped me to shed a few things that I no longer needed, and I had been holding onto. I don’t know if this will happen again, but at the very least I will be more prepared for it if the anger comes again.
I spoke to my therapist the other day about all of this, and it was the first time that I had talked about the self harm to someone else other than my husband. She asked me how I felt talking to her about it and to my surprise I didn’t feel ashamed of it. My anger and my temper are part of me and I haven’t lost my temper like that in so long when it used to be every day. I told her about how it felt right now that I was trying to find my way through the forest and every obstacle, every rock or log or boulder, all while focusing on the light that was trying to shine through the leaves of the trees around me. A little bit of light despite the darkness that I found myself in. My therapist said that it sounded like I had a bit of clarity and a lot of growth. When I asked her what she meant by growth, she said that every other time I had described the dark forest, there had been no light. Now there was.
I have no idea what the future will bring but there are a few things I know for certain. The multiple sclerosis and my cerebral palsy aren’t my fault, that everything is being done to make sure that I remain healthy and that I have so many people around me that love me and only want to make sure I’m safe. There is love all around me and I’m surprised to even feel some self-love towards myself. I am not the one causing the disappointment, but the situation is certainly disappointing. There is so much that I have in my life to be thankful for.
Love can move any mountain, even the ones that we put in front of ourselves. Every day is a gift, no matter what it brings.
When my multiple sclerosis first hit, I lost a lot of my memory. I used to remember the plot of every book I’d ever read and every movie I’d ever seen. I could quote lines from books or movies at the drop of a hat. When I woke on that morning of December 31st, 2013, all of that was gone.
I couldn’t remember anything that I’d read or watched before and all memory of it was gone. I forgot people that I had known for years as well. They would approach me and I knew from the expression on their face that I was supposed to know them, but I didn’t. Those people reminded me of the Blank from Dick Tracy, known but unknown.
One time at work, I ran into a guy who I thought was checking me out while we rode in the elevator. When the elevator had cleared of people, he addressed me and asked how I was, whether or not I still talked to a person we had apparently both known. He looked at me with a sneer and I could not think of why he disliked me but could feel it running off him in waves. I had no idea who he was.
It did have a bonus side; I could now pick up any book and it would be like I had never read it before. I could watch movies that I had seen and I knew that this movie had brought me joy before and that was a way to comfort myself, even if I could not remember the plot or the lines that I used to know by heart.
People have remained a mystery to me. There are people that know me on my social media accounts, but I have no idea who they are really or how they know me. Some of them I’ve known for years, but I can’t recall how we met or who they were to me before I moved on to a different job and we were no longer in each others orbits. Sometimes, if the person is right in front of me and they are talking of things that we used to do, I will gently stop them and tell them what happened and that they will have to refresh my memory or at the very least tell me their name.
I find this very difficult to do. I know that it can be insulting, that this other person may have memories of me, but I have none of them. I feel embarrassed by this, but gradually I’m able to form a new relationship with the other person, if there is something there to salvage. Sometimes, it’s just nice to meet someone I used to know and now have the potential to know again.
The other day, I was contacted by a woman I used to know in high school…and I knew who she was right away.
Words really can’t express how I feel at knowing someone so clearly. It’s been so long since I’ve seen her and memories of who she was and what she had meant to me filled my mind. I could see her face; hear her voice and I knew her name without asking. This was bizarre to me. Usually, I tried to search within the shadows for the ghosts of people I used to know and coming up empty every time.
It was like some kind of gift, knowing who she was right away and recalling memories of times that we had spent together. It also reminds me how odd it is living with multiple sclerosis, that sometimes there will be a light that shines through the fog and everything becomes clear, even if just for a moment. Moments like that are few and far between, so I take it as the gift that it is, even though it has no form.
I could take it as a sign that my mind is healing itself, but I won’t be going that far right now. I’ll just enjoy the gift for what it is and the memories that I had forgotten but somehow remembered. I will gladly accept this gift and it sparkles so brightly.