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.  

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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

One Day at A Time

Like many people, I’ve been waiting patiently.

This virus has taken over our lives and I personally view the vaccine as a step towards taking back some control. I know it’s not a cure all and we’ll still have to wear masks for a time until herd immunity is achieved, but I would feel safer.

I’ve been watching the vaccine roll out with anticipation. I knew that as a person living with relapse and remitting Multiple Sclerosis and Cerebral Palsy that I would be eligible in phase two. I’ve been watching for new about when phase two would begin.

This morning I was thrilled when “people with highest health risk conditions and their caregivers” was added to the dropdown menu! I clicked start and then…got nowhere fast. It said that I would be contacted by my local health practitioner or doctor; the only problem is that I don’t have one.

Again, like many people, I’ve been waiting a long time to find a family doctor. I contacted my neurologist who told me that the MS Clinic does not deal with vaccinations and that the website gives out misinformation.

I called the toll-free number anyways hoping that I would be able to speak to someone. After waiting for over an hour, I spoke to someone who said that she couldn’t help me and that they were only booking for people over 55 at this time. I told her that phase two had just opened but she was unable to help me.

She did give me the number for Ontario Public Health. The woman I spoke to there listened to what I had been through so far and put me on hold for a moment while she spoke to her supervisor. When she came back, she apologized and said that I should never have been referred to them but what she had found out was that phase two would be rolling out in stages.

She apologized that the website wasn’t clear and that there is no real information given in terms of phase two. She said to keep checking back for the next two weeks to see when the update on the information for the phase two roll out was posted.

As someone who lives with MS, I know that the worst thing for me is stress. It sets off my symptoms and makes it difficult for me to function. I’ve spent an entire day stressed out while trying to work at home at the same time. After today, I don’t feel like I’m being seen.

Until they figure out what they need to do, I’ll just focus on sparkling on and focus on the positive. I have my husband, my family, my friends. My life is full of things to be grateful for. I will focus on that for now until I can get my vaccine.

All I can do is take things one day at a time.

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I’m On TV! Let’s Chat with Derick Fage

Hey Everyone!

Check this out! I was on TV!

I was on Let’s Chat with Derick Fage. During the episode, we talk about what it’s been like living with Multiple Sclerosis and Cerebral Palsy and what my journey has been like.

Click below to watch and I hop you enjoy it!

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Happy Birthday Little Yellow Magnet!

On March 3rd, 2019, Little Yellow Magnet was published and sent out into the world. It’s the most difficult book that I’ve ever written. Thus, it’s also the one that I’m most proud of.

In 2018 I sat down to write a little book on positivity. People were always asking me how I stayed so positive living with Multiple Sclerosis and Cerebral Palsy. Being a writer, I thought I would write a book on positivity and positive thinking that would hopefully help others.

I called it Mastering Self, see what I did there? I thought to link the title to MS in some way as the MS had truly taught me what I was capable of. The only problem? I got to page twenty-nine before I realized that it wasn’t working.

By focusing on only the positive elements of my experiences with Multiple Sclerosis, I was ignoring all the work that I had done on myself and ignoring everything that I had been through. Just focusing on the positive wasn’t working. It was like the Coles Notes version of my life.

I had learned a lot from the dark. I learned what I’m capable of and how to sparkle as brightly as the stars. In the darkness, I could finally see how brightly I shone. I had been through so much to get to where I was that I knew that I had to write everything, every moment, not just the happy ones.

When I started writing Little Yellow Magnet, really started, it felt like I was coming home to myself in a way. Someone asked me during the writing of it why I felt I had to write the book. I said that it wasn’t so much that I felt I had to. I was compelled to write it. It was my hope that if Little Yellow Magnet helped just one person, then my book had fulfilled its purpose.

It was so wonderful to let everything out, too. During the writing of Little Yellow Magnet, I realised how much I had been holding on to, how much I still hadn’t let go of. The memoir was a cathartic adventure through my life and I could finally see how very high I had been able to climb.

To celebrate Little Yellow Magnet’s second Birthday, I have two gifts for you.

The first one is that you can read Little Yellow Magnet for free. From March 4th to March 8th, you can download the ebook of Little Yellow Magnet from Amazon. If you read it, all I ask is that you review it on Amazon, or anywhere else you like to post book reviews. You can download it here:

The second gift that I have for you is that you can also read the original seed for Little Yellow Magnet: Mastering Self. It contains all twenty-nine pages of the original attempt at what became Little Yellow Magnet. I like how you can see what the memoir would become, even within those twenty-nine pages. It’s like a companion to the memoir, the seed that grew into full bloom.

I hope you enjoy it and that it inspires you to read Little Yellow Magnet so you can find what happened. You can download it here free. It’s in PDF format and free to read.

Little Yellow Magnet is available in ebook, paperback and audiobook. Whichever way you read it, I hope that the story takes you on an adventure.

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On Becoming Aware

Today is the first day in MS Awareness Month.

When I woke this morning, I had no idea that it was MS Awareness month. I put on an audiobook to listen to in the background and chose to listen to the audiobook of my memoir Little Yellow Magnet. I listen to it from time to time when I need to remind myself of how much I’ve accomplished and how much I’ve been through. I listen to the audiobook when I need a reminder of how strong I am and everything I’ve overcome.

Midway through the day, I saw a Facebook post about it being the first day in MS Awareness Month and I thought that life is funny like that, sometimes. That gave me a new lens to listen to my memoir with. Would anything have been different? Would I have done anything differently?

Before I was struck with MS, my twin brother had been diagnosed with the disease. I didn’t look up anything or read anything because as far as I was concerned, his diagnosis didn’t have anything to do with me. After my diagnosis, I was so afraid of what had happened to my world and even more, what I had become. At the time, it didn’t even occur to me to reach out to my brother for help a voice of reason. He had been living with his MS for over a year by the point when mine made itself known. I wish that I had reached out to him to find out what it was like for him.

However, the journey I’ve been on with Multiple Sclerosis has been my own. Every step had felt like I’ve been climbing a flat mountain. My feet are flat on the ground and yet at the same time, I’m standing tall on the peak of a mountain, high up in the air, and I can feel the wind caressing my face. I can look back at everything I’ve done and all that I’ve accomplished. It’s hard to believe that I’ve lived with this disease for seven years. I can’t believe that it’s been that long and yet when I listen to the audiobook, read by the talented Tony Armistead, I know that it’s true.

I remember the first time that I became aware of my Multiple Sclerosis. I knew something was wrong when I started to fall with no reason. I fell all over the place, more than usual. I fell at work once getting Christmas decorations for my cubicle. I fell at home, with no reason and no warning. I knew something was wrong, but I didn’t know what. I knew that it was more than my Cerebral Palsy. It has its own challenges but falling at random was not normal for me.

I think when I really became totally aware of my MS was after my official diagnosis. I knew at that point that I would have to acknowledge it, that I would have to get to know it intimately and that I would have to come to peace with it. That last part took me a long time to do and there are some days where I’m still fighting against my MS and my CP. However, I’m aware of it. I couldn’t not be.

Throughout the journey that I’ve been on, I’ve learned a lot about myself and what I’m capable of. In the end, I still come to the same conclusion. I’m grateful for what the MS gave me. It was only after I became aware of it and chose to try and live a better life that I really and truly started living. I think back on my life before MS and I know that I was a completely different person that I am now. I’m immensely proud of the person I was and the person I became. I’m even more proud of the person that I’m becoming.

You can get your copy of Little Yellow Magnet in ebook, paperback and audiobook here:

https://www.amazon.ca/Little-Yellow-Magnet-Jamieson-Wolf-ebook/dp/B07PCSC3G4/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=&sr=

Posted in Falling, Little Yellow Magnet, Memoir, MS Awareness Month | Tagged , , , , , , | Leave a comment

On What You Can’t See

I was asked to speak at a conference at work about what it is like to live with two invisible disabilities.

I immediately said yes. I’m open about my disabilities; heck, I write about it on here for everyone to read. I’ve given talks to small groups before but never one the size of todays group. Also, they are my coworkers. That added another aspect to consider. How far did I let people in? How much was too much?

In the end, I decided that the best path forward was to be completely honest; it’s a lot easier that way. The talk was well received and it’s my hope that people learned something. Read my talk below and I hope you enjoy it!

I live with two invisible disabilities. I was born with Spastic Cerebral Palsy and in 2014, after nearly a year of being ill and not knowing why, I was diagnosed with Relapse and Remitting Multiple Sclerosis.

Both of my disabilities cause their own challenges. I am in pain every day. My Cerebral Paly and my Multiple Sclerosis both cause spasms but there are a host of different things I deal with on a given day which include crushing fatigue, brain fog and difficulty speaking. Multiple Sclerosis has a list of twenty-eight different symptoms: fatigue, vision problems, tremors, numbness, cognitive problems, dizziness, vertigo and more. I’ve experienced all of them. 

There are days where I have difficulty walking and other days where it takes almost all the strength I have just to get out of bed and get dressed. There are others where it’s like I’m looking at the world through a thick layer of glass where nothing looks clear. Having both Cerebral Palsy and Multiple Sclerosis is not supposed to be medically possible, according to my neurologist. I guess I’ve always done things my way.

I find that because both of my disabilities are invisible, people really react when I walk with my cane. They often asked what happened to me and when I tell them about having Cerebral Palsy and Multiple Sclerosis, the response that I get most often is “You don’t look sick.” When I explain that I am on medication, I often get told “So that’s okay then, you’re cured, right?” When I explain that neither of my disabilities will ever go away, the look I get back is one wonder.

I’m often told that I’m brave for living the way I do. I can honestly say that bravery has nothing to do with it. I do have a will to live despite the pain, the fatigue and not knowing what one day will look like when I wake up in the morning. There are many joys to experience in any given day.

I’ve used positivity to get through my challenges. My motto is sparkle on because I’ve learned that we can only see the stars in the dark. I try to overcome my limitations every day with positive thinking and it helps to a degree. However, on the days where you’ve seen me smiling, that might have been a day where I was in a lot of pain. Or maybe those days where I might seem down? Those are days where it’s taking all my effort to concentrate because of chronic fatigue. On those days where I seem quiet? It’s usually because I am having difficulty speaking and I’m using my words sparingly.

When you look at me, you have no idea what I’m going through. And you know what? That’s okay. One of the reasons I’m so open about living with my disabilities is that if I don’t say anything, you won’t know. My hope is that by being so open about living with Cerebral Palsy and Multiple Sclerosis, it will make you aware that there are others around you that are living with any number of invisible disabilities and you have no idea.

In the end, I just try to take things one day at a time. I don’t know any other way to do it. Thanks everyone and sparkle on!

Posted in Disability, Disability Tropes, Invisible, invisible disabilities | Tagged , , , , | Leave a comment

On Forgetting Fear

I forgot and that’s the most amazing thing.

On December 31st, 2012 I woke and my body was not my own. I was groggy and when I tried to stand, I ended up falling down again. As I made my way to my coffee pot, I fell into my fridge and then into my stove. I remember standing again and I poured myself a cup of coffee and lit a cigarette. After only a sip and a few puffs, I was violently ill.

It was the fist day in what seemed like forever. It was the first day that the Multiple Sclerosis made itself known. I couldn’t walk and had gone temporarily blind. Eventually, half my body would be frozen. I would have to learn to walk again with the aid of a cane. I also had to relearn how to speak and how to type. It was the beginning of a long process of getting to know who I was again and who I was meant to be.

That was a long way away, however. On New Years Day in 2013, I thought my life was over. I didn’t know what was causing this uproar in my body. I only thought of sleeping, of giving in to the darkness and letting it take me away. I only thought of giving up and letting go.

For a long time, I remembered that moment of fear and it rode on my shoulders, following me wherever I would go. I was afraid of life and what could happen to me. Of what was in my body and what it could do to me.

I gave that day a lot of power over me. For a few years, New Years Eve day was one of immense fear for me. I had the mistaken idea that the MS would come to finish me off, that I would have another relapse and that my life as I knew it would change again. That it would take my life from me.

I’m not sure when I started to forget the power that December 31st had over me. I can’t pinpoint the exact moment, but over time the fear faded and I didn’t approach the end of the year with fear but with anticipation. It was another chance to begin again, not another chance to be afraid.

Even so, letting of the fear was difficult. I had become so used to being afraid, to being unsure. It took a few years, but soon, it was a day of celebration. I think that the multiple sclerosis has taught me who I really am and who I was meant to be all along. Now when I remember what the day brought to me, it is a day of celebration. It is the day I took my first steps toward becoming myself.

Along the way, I’ve forgotten the days that brought fear and loathing to me. I’ve forgotten December 31st, I’ve forgotten how dark April and May used to be and now I look at August 21st, the day before my birthday when I received my diagnosis, as a day of becoming instead of one of fear.

I’ve been able to let go of fear and change what those days represent and that all began when I started to forget what December 31st represented. Now, when I remember what the day used to mean to me, I look back at who I was on December 31st, 2012 and I marvel at how far I’ve come and at how much I’ve grown. I can only hope that the new year brings many different opportunities to grow and change and to expand my spirit and my place within the flow of living. I look forward to seeing where I am this year on December 31st 2021 and how much I’ve grown.

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