The Light Through the Trees

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.

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Someone I Used to Know

Something interesting happened the other day.

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.

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The Challenges I Overcome

I was asked to give a talk to the people I work with to celebrate the International Day of Person’s with Disabilities. These are the notes that I wrote. I planned to read them out loud, but ended up just speaking from the heart. The response was lovely and I got asked some really thought provoking questions.

I did want to share the notes with all of you. I was asked to talk about not just the challenges I face, but how I work at overcoming those challenges.

Enoy!

So I live with two different disabilities. I was born with spastic cerebral palsy and eight years ago, I was diagnosed with relapse and remitting Multiple Sclerosis. Both of them affect my body in different ways.

The cerebral palsy means that at any given time, my body is in some kind of pain. My muscles will spasm and they will normally take a day or two to unclench and relax. It can sometimes take up to a week for those muscles to relax, but by that point more spasms will have taken place. For instance, my right leg spasmed sometime last week and the muscles have yet to relax which makes walking painful.

It causes difficulty with my walking and coordination and balance.

The multiple sclerosis is something else altogether.

I’ve had to re-learn how to walk, speak and type. When the MS first hit, I lost a lot of my motor functions and have had to reclaim them. I still have difficulty talking occasionally when my brain knows the words but the words don’t want to come out.

Like the cerebral palsy, the multiple sclerosis causes spasms, along with a whole list of different symptoms and challenges. The ones that I deal with on a regular basis are balance issues, brain fog, crushing fatigue, tremors, vision problems and blindness, bladder and bowel problems. I also have issues with memory. For example, I used to remember every book I’d ever read and every film I’d ever seen. Now that’s all gone.

I also have times when I randomly fall because my muscles give out when I’m walking. Thankfully, there has always been someone around when this happens and it doesn’t occur too often.

I was lost in the dark for a bit. I call it the dark forest. I live with depression, so dealing with the MS on top of the CP was made a lot more difficult because of that.

A few months after the MS hit, I knew that I had to change the way that I look at everything. I didn’t want to bemoan my life. I wanted to celebrate it in some way. I knew that this was an important choice to take control of my life.

I do a number of things to help me deal with living with Cerebral Palsy and Multiple Sclerosis. I work out three times a week and when I can, I try to swim three times a week and go for a walk up to three times a day. This helps keep my body active and also helps to loosen my muscles.

I also write a lot to keep my mind active. Having to focus on the plot of a story helps to give me focus and keep my mind clear. I’m always writing something or thinking of the next story or piece of writing. In the past two years of Covid, I’ve written five books.

I also paint. Whenever I get stuck on a story, or just when I feel the need, I paint. I do abstract work and I try to evoke the feelings that I’m going through that I sometimes have no words for. It helps to clear my mind and always releases feelings that I may be holding on to.

I meditate at least twice a day, once in the morning and once in the evenings. It helps me to find that centre of calm. When I have difficulty figuring out what to do in a situation I may find myself in, I usually meditate before I make a decision. That way my mind is clear and my decision is sound and not motivated by the wrong emotions.

I also read Tarot cards every morning and oracle cards every evening. It bookends my day and gives me a focus for the day when I read Tarot in the morning. In the evening, I find it helpful to reflect on what I’ve learned that day. This all helps with the positivity.

Ultimately, I’ve realized that positivity is a choice. I can spend a lot of my energy focusing on the negative things in my life, or I can try to find the joys that are in every day. Sometimes, I have to really look for them if I’m but there is always joy, even if it’s small.

Posted in Autoimmune Deficiency Disease, Challenges, Falling, fatigue, Lesions, self esteem, Small Victories, Spasms, Speech, Symptoms, Writing | Tagged , , , , , , , , , , , , | Leave a comment

Relearning How to Live

This is a piece that I was asked to write for today, the International Day of Person’s with Disabilities. It was published in a newsletter at work and while it was nerve wracking to put myself out there like that, the response that I got from the article made it all worth it. They asked me to write on the challenges that I face living with multiple sclerosis and cerebral palsy.

I hope you enjoy it!

At the beginning of my journey with Multiple Sclerosis, I had to relearn to do a lot of things I had done before without any thought.

When I woke the ms on the morning of Dec. 31, 2012, I had no motor control, vertigo and balance issues. I wasn’t able to remain upright and had to support myself with the walls and doorways in my apartment. I thought that everything would get better, that my body would miraculously heal itself, but as the days passed, I realized that I was not getting better and that I would have to find a new way to get around, especially if I wanted to go back to work. I had no idea what was wrong with me, but I was determined to find a way to deal with it.

I was able to obtain a cane and with it, I learned to walk again. It was difficult work as I had to retrain my legs and feet to take steps and to remain upright without falling over. It was slow going at first, but over time I was able to work out a rhythm and figure out how to walk in a new way. I took taxis instead of busses and took my time getting to where I needed to go. Sometimes, I was too hard on myself and pushed myself beyond what I could do, but it was all part of the new way of doing things.

I was initially diagnosed with labyrinthitis, an infliction of the inner ear that causes vertigo and balance issues. The doctors told me that everything would go back to normal in two weeks. This didn’t happen and I continued to get worse.

When I returned to work, I tried to carry on as if everything was as it had been, but my body eventually had other ideas. I lost the ability to type. I’ve been a writer for as long as I can remember and I had learned to type at a keyboard when I was in my teens. I could normally type without looking at the keyboard. Now, I couldn’t hit the right keys. My brain knew which direction I wanted my fingers to go in, but I couldn’t make them work. The messages from my brain would not get through to my fingers.

I had to retrain myself. I normally wrote several thousand words during a weekend without thought. Now, I had to work for a few hours to type out five or ten words. Instead of writing a novel, I would stitch those words together to make a poem, one word at a time. Each word I was able to type felt like a personal victory. The mountain may have been small, but I climbed it one words at a time.

Eventually, my body rebelled once more. One morning, I arrived at work and I wasn’t able to speak. I resorted to communicating with hand gestures and the odd word that I could actually get out past my stubborn lips. Once again, like typing, my brain knew the words I wanted to say but my mouth could not shape them. To say that I was terrified was an understatement.

However, that’s what made my mother make me go to the hospital. Thankfully, there was a neurologist on staff in the emergency room that day. He took one look at me and listened when I told him about the symptoms, I was having which included numbness, difficulty walking, speaking and swallowing. He said that it was likely multiple sclerosis, but we would have to run tests to be sure. In the meantime, I had to learn to speak more slowly and carefully form my words until the issue passed. This took some time and I still had to force my words out, so I chose them carefully.

When I was eventually diagnosed with relapse and remitting multiple sclerosis several months later, it came as a relief. The enemy that I was fighting now had a name and I knew what I would have to do. Though it threw several more obstacles in my path, and continues to do so, I am grateful for the life I have.

The multiple sclerosis has taught me what to truly be thankful and grateful for.

Posted in Bladder problems, Brain Fog, Canes, Depression, discomfort, fatigue, Spasms, Speech, Tremors, Writing | Tagged , , , , , , , , , , , | Leave a comment

Captain Maven and the Shadow Man – Coming Soon!

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?” I was thinking of the way I tried to remember the medication name: I’m a maven clad in raven’s clothes.

“That does have a nice ring to it.”

Now I couldn’t get the image of Captain Maven out of my head. I asked the very talented CaitGordon if she could draw me a Captain Maven drawing. 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. I love that drawing so very much.

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 that 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 as I normally just write a short story to give away. I’m already thinking of other stories that could happen with the other 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.

It comes out later this month, just in time for the Holidays! Stay tuned!

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On the Shores of Acceptance

I feel like I’ve been waiting for a long time.

In reality, it hasn’t been that long, not really. Time is no longer relative and it either speed up or slows down depending on the news you are waiting for. Well, tonight I got mine.

I finished the elimination medication that flushed the Aubagio from my bloodstream. It was three doses a day for eleven days and while it wasn’t enjoyable (not in the slightest), it meant that I could start the new journey that I am on.

I waited to hear something from anyone, but I finally had to reach out to my nurse at the MS clinic. I had to email her twice before I got a response. She had gotten in touch with the people from Mavenclad who got in touch with me. I find it odd but somehow reaffirming that I have to be my own advocate for my health. It makes me feel as if I’m partially in control, something I haven’t felt for a while now.

I was told by three different medical professionals that I would have to isolate myself. According to the people from Mavenclad, I don’t have to isolate, but I have to be wary of people and practice covid protocol’s while I am taking the Mavenclad medication which is okay. I’m used to that by now.

From the moment I start taking Mavenclad, it will deplete my immune system. After the three month treatment, it will be almost completely gone. I will have my front guard, not my rear one. I like to think of that front guard looking like solders at outside the doors of the palace that is my body, asking for identification and proof of vaccination.

It will take six to nine months for my immune system to rebuild itself completely and hopefully without the lesions. I’ll only have to do this once a year if it all works. The nurse said that at the very least, I will experience headaches, fatigue, abdominal pain and ten percent of people taking it experience hair loss. Good thing I can rock a bald head.

Strangely, I’m not afraid as I write this. It’s not because I feel brave or particularly strong. More because I have done everything I could think of doing. When I first got the news that I had new lesions after my last MRI, I had thoughts running through my head for a while. I wondered if I had been better, if I had been a kinder person, if I had exercised more, eaten even better, whether or not this would have happened. Late at night, I would look up at the ceiling and wonder why, why me, why now, what did I do? I pleaded with the Gods, begged them to change my path but ultimately it had already been changed for me.

I was so afraid. I was afraid of what the MS was doing to me, what it would continue to do to me. I was afraid of the new medication and what it could potentially do to me. I looked at the list of possible side effects: nausea, abdominal pain, headaches, flu and cold like symptoms, hepatitis A and hepatitis B, Shingles. Cancer.

I lived with that fear for what felt like eons, letting the words run around in my head and grow larger and bigger each day. When I read, all I could see were the list of symptoms and side effects, when I wrote, all I could hear in my head was the word cancer repeated over and over like a mantra.

I’m thankful that I have a therapist. I talk to her about a lot of this and over a few appointments, she helped me work through the five stages of grief. By the end of last week, I had arrived at acceptance. It felt odd standing on that shore, knowing that there was nothing I could do, that there was nothing that I could do except what I was already doing.

In all of this, I just have to keep living every day. Sure, there will be days where I am in pain. There will be days where I will be afraid or unsure of how I will make it to the next day. However if there’s anything that I’ve learned, it’s that while the sun goes down, it always comes up again, ready to start a new day. Every day will be a new blank page and I get to decide what I write upon it, literally and figuratively. In all of this, I need to remember that my health is paramount and that self-care is so important,

I’m trying to look at the positives: I am surrounded by love; I am not alone, and I sparkle. I have my beautiful husband, my family and friends and our cat always makes sure that I’m okay. I think of that time eight years ago when the MS first hit and I was alone and afraid. Now, standing on the shores of acceptance and looking at everything I’ve done, and everything I have yet to do, I’m ready.

I feel like someone is turning the page in my life and I’m about to start a new chapter.

Posted in Autoimmune Deficiency Disease, Covid-19, Mavenclad, MRI's, Neurologist Appointments, results, Side Effects, Symptoms | Tagged , , , | Leave a comment

The Maybe of Mavenclad

I’m afraid.

As September comes ever closer, so does my medication change. During July, September seemed so far away but now as we get to the end of August, September 21st seems so much closer.

On that day, I will be talking to my MS nurse to begin the two week process of flushing the Aubagio from my system. I’m not sure what that will entail yet. I will be without medication to protect my body for three to five days and then I will begin taking my new medication Mavenclad. This new medication comes with a whole host of side effects and symptoms. I will have to isolate while I am taking it for up to six weeks or so as Mavenclad will destroy my immune system and builds itself back up again.

As I’ve gotten closer to September, the fear inside of my mind has grown and some days, it feels like it’s taking up my whole body, as if I am a walking cloud of fog and shadow. I am at the edge of the dark forest, and while I have seen the light within the trees, I have yet to go in. I am trying to understand this fear and the changing landscape of my body.

I know that the best thing I can do for myself is what I’ve always done, tackle everything with positivity and light, trying to remain thankful and grateful for the life that I have around me. It’s hard for me to do that without knowing what the new medication will do and how it will affect my body and my life. And yet, I can’t continue holding on to all this fear. I can’t let it rule my life or my body.

It’s not like I haven’t faced the unknown before. My whole life has been a series of unknowns, maybes and I’ve survived it. I’m trying to figure out why this unknown, the maybe of the Mavenclad, is having such an impact on me. I’ve been drawing cards and meditating about this and I’m no closer to an answer. I’ve come to realize that that’s okay.

I’ve faced Maybe’s before and climbed the mountains that I need to climb, but I’ve never really owned up to my fears before. When I took on the task of living my best life despite and because of my Multiple Sclerosis, I did so without acknowledging the fear that I carried with me. Now, I am trying to look at my fear in the face and understand it. I’m trying to see what I can learn from it.

So yes, I am afraid. However, this time my fear will be one of my superpowers. I’ve been open about my fear with my husband, friends and family. I also know that I am not alone in all of this, that I am not living on an island with only my cross to bear. It’s not a mantle I have to wear alone. That changes things for me, the knowledge that I am not alone on this journey and we are all facing the unknown together.

I think the thing that bothers me the most is that the MS is taking more away from me, despite what its already taken and what I’ve already given it. I had to miss a family gathering this weekend, I will have to miss a Thanksgiving celebration as it Thanksgiving takes place during the time that I will have to isolate because of my immune system being shot. As much as I try to take a point of view of positivity and light in the face of my challenges, I’m just so fucking tired sometimes of what it has taken from me and what it will continue to take.

I will learn form my fear and my anger, I will befriend them instead of running away, so that I can thrive and survive this. I will embrace the idea of maybe so that I can learn to breathe. I do not know what the Mavenclad will do to me until I am right in the middle of the storm. I will have to go with the flow and ride the waves. I’ve climbed mountains before and I will climb this one, too.

I will sparkle on, despite the maybe of Mavenclad and when I reach the top of this new mountain, I will let the sun shine down upon my skin.

Posted in Depression, Fear, invisible disabilities, Stress, Talking | Tagged , , , | Leave a comment

Embracing the Changing Landscape

If having Multiple Sclerosis has taught me anything, it’s to try to embrace change, however much I dislike it.

I had another MRI in April of this year, my first in a while. I finally had my MRI follow up appointment with my neurologist. I pretty much knew what I would hear in the appointment. For a while now, my symptoms have been more frequent and lasting for a longer period of time. I’ve had more difficulty walking and a lot more pain in throughout the day. I know my own body very well, so I knew that something within me had changed, that the MS was different.

Shortly before my appointment, I got my MyChart MRI results. I clicked open the results with some apprehension. I read the findings and they said what I feared: there were new lesions and even older ones that they hadn’t seen before. I got the results a couple of weeks before my appointment and the nervous feeling had plenty of time to grow within me. It was a flutter in the back of my mind that was always there when I was trying to sleep or work. The last time I had had new lesions, they had changed my medication from Copaxone to Aubagio so I knew that a change was coming. The tier three meds are awful so I wasn’t looking forward to that.

I recognized that feeling. It was the one that I had carried with me before I was officially diagnosed with multiple sclerosis. I knew that changes were coming, but I knew that I would handle it differently this time. When I was diagnosed in 2013, I fell into a deep depression and became suicidal. I knew that it would be different this time, that I would not go down that path, as hard as it got. I would go on living any way I could.

I met with the resident neurologist first and she took me through the usual tests and stretches and asked how my symptoms were. One of the tests I was ready for. I always practice ahead of time. I had to walk across the room heel to toe and I’ve only ever been able to manage a step or two every time I’ve attempted it since I was diagnosed in 2013. Well, if there is a positive from the appointment, it’s that I finally managed to walk across the room heel to toe. Now, it was a small room, but that doesn’t take away from the mild feeling of accomplishment that I felt.

The resident doctor showed me what my new MRI looked like. I did see some improvement. My old lesions were still greyed out, the golf ball sized lesion that looked like a moon within a sea of stars no longer visible. She showed me where the new lesions were and they looked harmless. There was only a scattering of pale stars in the sea of black and grey, nothing like I’d seen before. That was also a positive.

My neurologist came in after my tests were done and she confirmed what I had already known: there are new lesions and I would need a change of medication. She asked me what I was open to. I told her that my brother had to have infusion therapy. As long as I didn’t have to have that, I was open to anything she was willing to try. She told me that she would be putting me on a drug called Mavenclad. I would take it  twice, six weeks apart instead of every day. It will  suppress my immune system so that it will have to rebuild itself.

It can cause shingles, hepatitis A and B, cancer and liver problems and a host of other issues like flu and cold symptoms, hair loss and pain. I’m no stranger to pain. I would have to pay attention to my health while taking it as I would be at risk for infections. I will take it once a year for one week and then have a four-week break and then I take it for another week. If all goes well with the MRI’s and establishing a baseline, I will only have to take it every two to four years.

Even though I knew that a med change was coming, knew without a doubt that I would have to climb another flat mountain of some sort, it was still a lot to take in. During the appointment, I felt like I was in a sea of calm as my neurologist explained that I would need a shingles vaccine and different types of bloodwork and tests done before I could go on the Mavenclad. She explained that I would have a meeting with one of the MS nurses in September, after I had had all the testing and vaccines done, and she would take me through the process of flushing the Aubagio from my system. I nodded and tried to take this all in, the sea within me starting to grow in volume.

I called my mother once we got to the car and all throughout it, my voice was calm and measured when my insides were filling with the water of my emotions. My husband drove us to the post office where I had to pick up a package and after the call my mother texted me and told me how brave I was. After that, the floodgates opened. I sat there in the car and cried while my husband held my hand and told me that it would be okay. I was so angry and despondent.

“I don’t understand,” I said to my husband. “I’ve done everything I can do to fight this. I’ve changed my diet, I workout three times a week and swim when I can. I’m more spiritual now and have really embraced my life. Why doesn’t any of that make a difference?”

“Because MS doesn’t care,” he said. “It doesn’t care what you’ve done to fight it. The MS only does what it wants. You’re still doing really well, though. You’re not walking with a cane and you’re able to take care of yourself. I’ll take care of you too.”  

We got my package and drove home. On the way there, I made a decision for myself. I would not let depression take me away like it had before. I had become a shell of who I was and was too content to wander inside the dark forest. I remembered that time well and could not to do that to myself again. I couldn’t let the fact that my life was changing again and that parts of it were beyond my control make me lose sight of what mattered and what I had in my life that was worth staying here for.

I would allow myself a day or two of grief and then I would get on with living. There was no point to letting the grief go on any longer than that because it wouldn’t accomplish anything. My life may be changing again and a new flat mountain may be in front of me, but I can’t lose sight of everything that I do have that I didn’t have in 2013. I have a loving and supportive husband; I have support from my family and friends and so many other people.

My life was so different from the one I was living during that time. Yes, the landscape may be changing once again, but I am stronger now than I was all those years ago. I have to embrace the changes that are coming and I can’t afford to be angry with myself or the games that the MS is playing with my body. I would do what I could to prepare myself for the road that was ahead of me.

I had my first shingles vaccine the other day and, in a way, that was the first step towards a better and stronger me so that I can be ready to climb a whole new mountain. I know that I’m not alone and that I got this, even if it doesn’t feel like I do. I need to remember that my life is a magical thing and that, even during times like these, there is joy to be found within it.

All I have to do is sparkle on so that I have light with me while I’m climbing the mountain.

Posted in Doctors, MRI's, Nothing Without Us, self esteem, Small Victories, Walking | Tagged , , , , , , | Leave a comment

A Star Upon the Waves

I’ve been losing control of myself for a while now.

Over the past year, I’ve noticed a worsening in my symptoms. I am in far more pain than I ever have been before. It’s gotten to the point in the mornings where I have to sit down while I brush my teeth just so that I can give my legs a break. I’ve had a hard time walking, my fatigue has been more pronounced, and my other symptoms have been more active; I’ve had difficulty speaking and my brain fog is a lot worse. Part of me thought that this had to do with the pandemic but the other part of me, that just kind of knew something had changed within me.

I had an MRI recently and I’ve been waiting for the results. I had a follow up appointment with my neurologist, but I had to wait a further seven to ten days while they compared the results from the newest MRI to the most recent ones. Seven to ten days is an ocean of time when you are waiting for any kind of results. Part of me just wanted confirmation of what I already knew. I wanted to see it there in black and white.

This morning, I got an email saying that my test results had come in. That email kept flying around my head. At times, it felt like I had a bird inside of me that was trying desperately to fly out of me. I kept having to soothe it and calm the bird down before I went crazy. It held a letter in its beak, and I knew that letter held my results.  It kept hopping into my line of vision so that I couldn’t help but see it. When I was done work, I finally logged in and clicked on my test results. The bird finally flew free; I didn’t need it anymore.

The test results were a jumble of words and medical lingo, but in that jumble, there was an undeniable truth: I had new lesions as well as lesions that hadn’t been detected before.

I don’t know how I feel at having my intuition confirmed. I read through the information twice and then had my husband read it. It was easier than trying to recount it at first. I went out onto the balcony and let the sun wash over me. I thought about everything I have done to get to where I am. I’m living my best life, trying to be mindful of my disability and my disease while still living as much as I can.

I stood there thinking things through. I’d learned to walk again, speak again and regain function of my body. I had changed as many of my bad habits as I could, I embraced a healthier style of living…and yet, my body was still fighting against me. The dark part of my brain turned really dark and I began to wonder if it was because I wasn’t kind enough, giving enough, in touch with my spirit enough. Had god or whoever was up there found my efforts lacking in some way and decide to punish me?

I knew that that wasn’t it but couldn’t help but let my brain go there. Part of living with multiple sclerosis and cerebral palsy is living a life where a large part of it is out of my control. I try to control what I can be living with a routine that I can control. However, my body will remind me that controls what happens.

I talked about it with my husband and then with my mother, almost crying both times. It was when I was talking to my mother that something occurred to me. I voiced it out loud: The MS may try to control my body, but it does not control my life. I am choosing to look at what I can learn from this situation. I have climbed the flat mountain before, making it to the very top. My life is not over even though I have an unpredictable disease within me. It does not control my enjoyment of life or the life I lead. I can’t let the MS take that from me, so I’ve decided that it won’t. Even within a roaring and twisting sea, there is hope.

My mother told me that I don’t have to sparkle if I don’t want to, but I countered that you only really see the stars in the dark. I choose to sparkle on, knowing that it will bring me light within the dark. I will sit with all of this for a day or two and then I will get on with living my life and the light from the stars will bring me hope.  

I did let the tears come and they brought me some relief. I know that they may come again. I just need to remember to sparkle so that others can find me within the roaring see, a star floating upon the waves.  

Posted in Lesions, MRI's, results | Tagged , , , , | Leave a comment

Living My Best Life Two Steps at a Time

I was talking to one of my friends about the pain levels I live with.

The pain has been so bad lately. In the morning, I have to sit down while I brush my teeth, just so that I can give my legs a rest. My legs spasm throughout the night and it makes walking challenging, it has just been so much pain lately. It’s almost been too much. I’m in pain all day, every day and it only seems to be growing.

I no longer know whether it’s the Cerebral Palsy (Cybil Paulsen) or my Multiple Sclerosis (Max Shadow). They are both spastic in nature and I’ve lost the ability to know the difference in between the types of spasms I have. I just know that I wake up in pain and I go to bed in pain. However, I don’t see myself as suffering. I’ve just known pain for so long that it’s just something I live with at this point.

One of my friends asked me if there was any way around having to experience the pain and it was kind of like a smack in the face. I felt like asking them if they were serious. I live with disease and a disability and they cause pain. I already do so much to try and counteract that pain. Rather than get upset, I decided to use it as a teaching moment. If I don’t say anything, they don’t know.

I am taking medication to help ease the spasms and the pain, but it can only do so much. I workout three times a week and walk whenever I can, with a cane if necessary. I eat mostly healthy with attention paid to the amount of whole foods I eat like meats and vegetables. I’ve also introduced carbs and grains back into my diet. That’s not to say that I don’t partake in sweets, but the fact that I still have chocolate from Easter should tell you something. That’s how I take care of my body.

I try to take care of my mind by reading as much as I can and writing as much as I can. I don’t turn to non-fiction as much as I should; I’m more comfortable behind the smokescreen of fiction but any kind of writing helps as does my painting. Both these crafts turn off my mind for a little bit and just let it run free. I’ve also started journaling, writing down thoughts on the day and at least one positive thing that happened that day. That’s how I take care of my mind.

As for my spirit? Well, the painting and writing help as those skills come from my spirit, but I also read Tarot cards to give me guidance throughout the day and the week. I have a large variety of crystals and each of them have their uses for healing and centring my spirit. I have several mala’s and meditate at least twice a day. I also listen to music whenever I get the chance. That is how I take care of my spirit.

I explained all of this to my friend, and I think they understood to the best of their ability. It’s hard to explain what it’s really like to live with constant pain. I often with that I had a switch where I could turn it off, or at least turn it down to a minimum; but I don’t have anything like that. All I can do is be as kind to my body and myself and continue trying to live my best life the only way I know how.

The pain will always be there but I’m doing everything I can to live my best life and all I can do is take it one, or two, steps at a time.

Posted in diet, Disability, Walking | Tagged , , , , , , , | 1 Comment