I am no closer to achieving any dream than I was a year ago, and I would be lying if I said that I’m okay with that. I would be lying if I said that I’m perfectly fine with this ankylosing spondylitis body of mine. With the fatigue. With the pain. And how both of these things have made it near impossible at this point to have the sort of life I envisioned as I was growing up. There are days when I am so profoundly sad, days when I simply wonder what will become of me and my mind is filled with dreary and scary images. But mostly I am filled with curiosity and wonder and an immense love of life despite this other shadow side of my existence, this side that no one sees. No one wants to hear the unending laments of the chronically sick–this has been my experience. And even more, they don’t wish to see them. It never ends and THIS is the rub: it simply gets tiresome for others. Imagine how it is for those of us whose sickness is constant and without reprieve. Imagine the loneliness, especially when it hits during the 2am dark and the other side of the bed stretches out like a plain of tumbleweeds.
I’ve not yet figured out how to live with my physical limitations, though it’s 7 years in to this autoimmune diagnosis. I was an active person before it all came crashing down and those images of running and hiking still fill my mind. Pieces of writing fill my mind now, too, so many pieces I wish to write, poems and prose. The struggle consists of drumming up the energy to get them out on paper or into the computer, to will my arms and hands and the rest of me to get to it. Some days it’s difficult enough to simply hold a book and read.
Dictation software has proved cumbersome and not to my liking; my writing has always come just as much from my hands as my brain, my hands that think as they type or move a pen or pencil across a page. I’ve not yet figured out how to bridge the dictation/pen and pencil and keyboard divide.
For today, however, I’m choosing to remember my four years of hard work, and how at the age of 42 I finally achieved my Dartmouth dream. I know in time the answers and way forward will become clearer. For now, I need to sit among trees and beside water, to listen to what nature has to tell me about this. It’s no accident that I drew the Vision Quest card…