I had a very long, insightful conversation with a stranger and it got me wondering about my rights.
The 6th day of November, 2018. Mid-terms Day, Voting Day, Election Day… Human Rights Day, in a sense. It is our special right to vote and we all know it. You see it everywhere you turn this week… signs and stickers and t-shirts and memes, all reminding us of this privilege we Americans have been granted. And when you look at a person today, it doesn’t matter what they look like. We can’t know what’s happening inside their brains or their hearts or their muscles or their nerves… but you know they have this precious right.
On Sunday, I was having a conversation, with the stranger, and it occurred to me that lately I have been having a hard time feeling empowered and in the “right” to speak about Multiple Sclerosis. As I spent some time explaining and answering questions about my disease, I was immediately overwhelmed with gratitude and hope. Saying things out loud to a brand new person makes it all so much more real.
I have so few symptoms. I have so little pain. I have so much strength. I have so much physical ability.
This disease we call MS is mostly invisible. For me, it is still completely invisible. So much so that I wonder if I am allowed to share my experience. If I have the right to speak in a support group setting or a conference or a hospital. For those with progressive MS, I cannot know their daily pain and I cannot know what it is like to lose my eyesight or the use of my legs.
What gives me the right?
But as I sit here, alone in my apartment, with my cat yelling at me and my eyelids drooping way too early as they always do… probably just to remind me I actually do have MS… I know we all have a story.
More suffering, more pain, more disability would not make me more of an expert. Less suffering, less pain, less disability does not make my voice less important.
I have Multiple Sclerosis and I feel really good most of the time and today I feel totally fulfilled and tomorrow I might not and next year I might have more pain or maybe I won’t. No matter. I’m going to keep on sharing because the truth is, something bigger than myself keeps pushing me to… even when I try and take a really long break from writing or even thinking about it.
Something tells me I have the right and that is a thing that cannot be wasted.