I wrote in my journal what it was like:
My Body - the Prison
I am heavy. There is a delay between the thought, "I'll get out of bed," and actually doing it. My mind says, "Do it!" but this body resists the command. Grudgingly and lacking grace - slowly - I arise. Feeling drained of strength, I force my way into the day, but the smallest part of morning ritual becomes exhausting. I am stuck in a fog of frustration, as one by one I give up my ideas of what to do and how.
Today, my body is the boss. I am not free to decide what to do or where to go, or even IF I do go, because my body is the boss. Before this disease I am forced to my knees in a posture of shame.... A rounded back (once straight), slumping shoulders and tremors here and there. I am rudely forced to serve this disease. I hate this disease.
Every gift I possess is challenged. It becomes more costly to give the world what I can. Today I'm having trouble writing and I can't work on art. But it's my heart to teach. Yet, I find it is difficult to speak and breathe, so I'm quieter.
I long to be free...freed from this prison and these chains. To embrace the ordinary - this is what I want. How good it would feel to walk without effort and move as if it were an art... to speak without thinking of how to form each word. to forget the ache in my joints; to be strong and not think about strength.
I want the millions of tiny things most people never think about that make up a day.... There is one thing, however, that still is all mine. It's my will. I choose which thoughts to entertain and I decide I want joy with wisdom and love. I will long for freedom from this terrible disease and hope for healing to come. I believe miracles really do happen and I believe in the Miracle Worker Who loves me.
Please heal me. Come set me free. I grow so weary in the wait.