I’d like to take a moment to talk about pain.
Everyone experiences pain differently. Maybe it’s muscle pain or internal pain. Perhaps it’s a mixture of both. For myself, there is no rhyme and reason to it. My Multiple Sclerosis causes spasms and I have spastic Cerebral Palsy.
I view that pain I carry inside of me like a classical composition: the spasms down low in my legs are the bass, the tremors along the skin and the pain that rides along my shoulders are like the wind section. There are cellos and violins, those beautiful frantic voices, they run along my arms and my legs; the spasms like the change their movement without reason.
I am in pain all the time, but you wouldn’t know it to look at me. Inside of me, the orchestra is playing all the time, but on the outside, there is only the grace of the sun and the brightness of the day. On the outside, there is only my voice, which sings along with the orchestra.
I’ve had difficulty walking lately. My feet have been dragging a lot, particularly the right foot. Because its dragging, I am tripping a lot, but it’s all good. At least I’m walking. I’ve been experiencing brain fog and crushing fatigue on an almost daily basis. Trying to see out through the fog in order to make sense of the day. It may sound funny, but sometimes the orchestra inside of me keeps me going. The pain often pushes me forward.
Today, I was talking with someone I know, and he said “We shouldn’t be here. We should be out in the sun.”
“Don’t I know it.” I said.
“We just have to call in sick. Maybe with back pain. That’s the one thing they can’t check.”
I must have opened my eyes in shock. “I’m already in pain.”
“Yeah, but not much, right?”
“I’m in quite a lot of pain.” I said. “All the time.”
“Yeah, but not much, right?” He said again. “I mean, how much is a lot? It’s not like you can be in pain all the time.”
I said something non-committal and walked away.
Some people just don’t understand, they have no concept of what its like. I often talk of the two men within me, Cybil Paulsen and Max Shadow. I picture them playing the instruments, playing their hearts out only so they could be heard. But I’m the only one who can hear them
But then I got to thinking. Everyone’s pain is different. There is no way that I could truly describe to someone what I go through on a daily basis. This blog is my attempt to do so. Everyone with a visible of invisible disability lives their own journey. This is only my own.
Occasionally, the pain wears me down. Once every so often, the symptoms and the issues I deal with on a daily basis keep me down. However, I choose to look at things in a different way. I have had to be strong on so many levels throughout my life; I’ve had to take many steps towards the me that I am now and a lot of them were painful.
However, I made it.
No matter the amount of pain I’m in, I still have a life to lead. I still have novels yet to be written. I’ve had quite the journey so far and I’m far from done yet. For myself, I needed a reminder of how strong I was, something I could look at when the pain became too much, something that would help keep me going.
In May, I got this tattoo. It’s my favourite card from The Wild Unknown, or any Tarot deck for that matter. It’s also a visual reminder of the strength that I carry within me, so that when it sometimes becomes too much, and I forget how strong I am, I have a visual reminder of my awesomeness.
In the end, the tattoo has become a talisman that I wear upon my skin. Somehow, it helps to quiet the internal orchestra sometimes.
Sometimes, all we need is the lion’s roar to remind us of how strong we are.