Before I was diagnosed with relapse and remitting Multiple Sclerosis, I thought I could cure myself.
Someone had said that it was all about mind over matter. I could choose not to be sick. I could choose my destiny and my way forward and I could cast the illness aside. I clung to that thought, the idea that I could cure myself. There were several problems with this, but I would only figure that out as time moved on.
When the illness was fresh, before the official diagnosis, I was in a terrible mental state. I had ceased to know who I really was anymore. I didn’t know where I ended and where the Multiple Sclerosis began. I tried to find answers to questions that I wasn’t able to articulate.
It began to take other things from me. It took my ability to walk and my balance. It filled my body with fatigue and nausea. I let it take my friends from me, shutting myself away until my only company were the trees that had sprouted from the shadows that filled my apartment.
The illness continued to worsen. I woke one morning to find my whole body had gone numb on my left side and I wasn’t able to speak. I had lost hearing in my left ear and had gone partially blind. The dark forest that took up residence inside of my head began to take up all the room it could, stretching itself so that its leaves filled my entire body. I was literally lost inside of myself.
Then I lost the ability to speak and to type. Without my words, without being able to use my gift, I was in complete disarray. The pieces of myself began to break apart and I could barely hold on to them all. I had to let some of them float away from me because they refused to remain still. My mother took me to the hospital right away.
At the hospital, I was lucky that there was a neurologist on staff. He took a look at me, at my lopsided face and listened to my slurred speech. He told me that it might be Multiple Sclerosis but they would have to run some tests. While they ran those tests, the forest grew by leaps and bounds. I could no longer see out of my windows.
Then the diagnosis came. After nearly a year of not knowing what was wrong with me, it finally had a name: Relapse and Remitting Multiple Sclerosis.
I was re-reading the Harry Potter series of books again at the time. I turn to that series when I’m sad or when I want joy or just want something good to read. There is a line that Dumbledore says near the end of Harry Potter and the Philosopher’s Stone. He says: “Fear of a name only increases fear of the thing itself.”
I thought: Now I know my illnesses name. Since I know the name, I can fight it. I don’t have to be afraid anymore. I was though. I was terrified. Multiple Sclerosis seemed too big a name, too large to keep inside of me. Being a writer, I thought it was only fitting that I give it a name as I would one of the characters I created, as I had the Cerebral Palsy that I was born with.
I had called the Cerebral Palsy Cybil Paulsen. Cybil was a reference to the book and movie from 1976 called Sybil where a woman called Sybil has a mental breakdown. So, I called the Multiple Sclerosis Max Shadow. It only seemed appropriate that he had the name of a spy, someone who could slide into my body and take things from me without me knowing. Someone who could hide within the shadows that my body carried.
I had thought that my illness having a name would be a shield against it, that the name of the nothing that I carried with me would give me power over it. I was wrong. In May of 2013, things reached the darkest point in my life so far. I didn’t know what to do, what I had done to deserve the diagnosis. Wasn’t having Cerebral Palsy enough? What kind of karmic retribution was this?
Unable to tolerate it anymore, I contemplated taking my life. I was sitting outside, a bottle of pills spilled into my hand and I was ready to live inside the forest and inside of myself. I have always lived with depression and it had never been this bad. I couldn’t hear anything above the whisper of the leaves from the dark forest that lived within me.
Thankfully, I had the sense to call my mother. She was the voice of reason that day and the light that shone through the dark canopy of leaves. She was the one who pulled me back so that I was outside of myself looking in at the foliage. I knew then that something had to change, that I had to take a different approach to what was going on within me. I had to choose a different path.
I turned towards my faith to find answers to the unknown. I’m Pagan and have always been drawn towards spiritual practices. I tried everything thing I could, if only so that I could ignore the whisper of leaves that wanted to pull me back within the shadows.
I took lessons on how to read tarot cards, I attended second level Reiki training, and I took workshops on essential oils and candle making. I read books on the tarot, on different spiritualties and filled my mind with as much knowledge as I could. I was so desperate to find anything to give me the answers to my unasked question. If I had taken a moment to utter that question out loud, it would have been “What is the cure for my Multiple Sclerosis? How can I find a cure?”
In between going to workshops and classes, I was learning to do things for myself again. I had to learn to walk again with a cane and I trained myself to type again. I worked on my speech and this was easier once the numbness eventually faded away.
However, what I most wanted to do again was write. Before my MS, I was able to type out thousands of words in a weekend. Now I could manage only five words. I strung those together to make poems. Those poems helped me to fall in love with the craft of writing. I had to really think of what I wanted to say and how to say it.
I learned to do simple tasks again like cooking for myself, cleaning my apartment, changing the cat litter, taking out the garbage and taking a shower and considered it minor miracles when I was able to do so without falling. It was a relief to be able to do things for myself again. I remember the first time I rode the bus again without having to use my cane. That was a joyous day and I felt I had conquered the flat mountain.
All the while, I was delving further and further into my spirit, knowing that the cure to my Multiple Sclerosis was close, I just had to read one more book, take one more workshop, learn one more spiritual craft. It was then that I stumbled upon manifestation. This workshop focused on manifesting the life that you wanted through a series of different techniques like mantras and tapping and rewiring your brain to think differently by welcoming in the good.
Let me tell you, I tapped myself until I was raw. I was so focused on trying to cure the MS that I couldn’t focus on what I had accomplished. Once again, it was my mother that opened my eyes. She told me that she was very proud of what I had done in such a short time. I asked her what the hell she was talking about. My mother told me that I had conquered my MS by learning to walk again, to take care of myself again and to soldier on despite an illness that would have kept many people down. She told me that my positive spirit was what had kept me going. When I asked her what she meant by that, she pointed out all the work that I was doing on myself, learning tarot and Reiki and manifestation. I had even met a man and had begun dating again, despite my fear of rejection.
I thought about what she had said for a long time. After a few hours of deep reflection, the leaves whispering lazily at me, it occurred to me that I had been doing all of these workshops in order to find a cure for the MS but what I had really found was a cure for myself. From then on, things changed for me. I began to view my life with MS and CP as a gift. That mindset continues to this day. Also, that man I was dating became my husband.
When Renaissance Press put out the call for stories for Nothing Without Us, I knew that I wanted to write a story for it. They wanted stories with disabled protagonists or protagonists living with chronic illnesses. I fit both. It could be in any genre and so I chose fantasy. They wanted stories told in our own voices that made the person with the illness or disability the protagonist and not the sidekick.
The original idea was to write a story about a mighty knight who climbed to the top of a mountain and conquered a best that lay within. The parallel I was going for was the fact that for me even a sidewalk can sometimes feel like a mountain. I knew that I wanted the story to be magical in some way and really wanted it to sparkle.
What came out instead was The Descent. I wrote the story in two sittings. It’s about a wizard named Jefferson who goes on a voyage to find an oracle. He wants the oracle to help with one specific thing: cure his MS. He’s tried magic of every kind and, when that didn’t work, he tried killing himself and was saved by the love of another, in this case a man named Mikhail.
As Jefferson makes his way down a long flight of stairs, he travels with his MS named Max Shadow. They have a conversation as Jefferson makes his decent into darkness to find the oracle and by the end of the story, the two of them learn something about themselves and how they need to work together. Jefferson realizes that he is his own oracle, his own salvation and it’s up to him to accept Max Shadow instead of spending all of his magic fighting against himself. That the cure he was searching for was choosing to live.
I was astounded by the story. Essentially, it was myself on the page clear as day but given the smokescreen of fiction. It wasn’t the story I had wanted to write, but it’s the story that wanted to come out. I tried to write another story, but the words didn’t want to come. I read through the story and I didn’t like it at first. I didn’t think it was magical enough. However, I decided to submit it anyways, thinking that at the very least I could post it on my blog if the story wasn’t chosen. I figured it wouldn’t be because the story felt too raw to me, too personal.
Thankfully, I was wrong. The story was accepted and has garnered some really wonderful reviews. People have thanked me for writing a story that deals with a trope that happens a lot in fiction where the protagonist is able to magically cure what is wrong with them or a cure is provided.
I think that is the most important thing in the end. I went on my journey and realized that I could cure myself, but not in the way that I first thought possible. I changed the way that I thought about my Multiple Sclerosis so that I no longer viewed it as a death sentence. By choosing to live my best life, even because of the Multiple Sclerosis, I had found the cure.
I choose my destiny and it is full of sparkles.