It’s hard to write about disease cuz people feel sorry for you. Or maybe the writing comes out like a torrent and it’s hard to relate to.
Two years ago I asked my neurologist to give it to me straight, and she did. There was lingo like infarct and subcortial and other things I didn’t understand. I took to googling which I don’t recommend, and there I found the adage ‘10 Years to the Chair.’ That means ten years after diagnosis most MS patients can’t walk. This was two years ago.
Lesions are the trouble spots where your immune system attacks the brain and spine. One in particular was white and glowing on the MRI and it was over half a centimeter in diameter which is like… a skittle.
What was in the skittle.
I stayed up late wondering what I lost.
I learned another word. Scotoma. That’s a black spot in your vision. I had big ones and rode my bike into a truck.
Perhaps all life changing moments grant power if we choose to accept it. The ability to RELISH. Last night I ran on the field with no pain. I scored a scrappy goal. I was in a valley surrounded by plants and the sun was in my eyes. I walked around town and looked at the arches and domes. I sat on old stairs and thought this is pretty good.
I don’t want to be sick. I love looking and living and running and eating and doing human things. It’s sweeter because of its impermanence I reckon, but I think if I was healed today, like, I got some kind of injection and was HEALED and the doctors said Wow it’s a miracle, you’ll live like any other regular Joe. I think I wouldn’t take it for granted even when I turned 50, 60, or 70. I’d still live with my eyes wide open. The scotoma is black and furry and sits right in the middle of your line of sight. It's an inflammation of the optic nerve. But you can glance around a scotoma, you see. If you pay attention to everything around you, all the stuff on the edges, you can see a helluva lot.
(images: from Noggin, a new short film about these very themes)