Homage to Stravinsky, 1976.
Strange sensation waking up in the mornings and realising that I can only move my arms with an enormous effort.
It makes me aware how much I have been taking things for granted, until I stopped being able to walk I never thought I would not be able to walk.
It’s a scary feeling waking up feeling my arms are stiff and painful, and my arms do not move automatically anymore.
These days arm movements need encouragement, I almost have to talk to my arms as I try to get them to move in the mornings.
Some days it feels like my arms are wooden, often I wake feeling enclosed, entombed which is extremely worrying.
I remember reading an article about a man with Parkinson’s in an old copy of Reader’s Digest; it was a moving story, of how he coped.
He talked to his arms and hands to encourage their movement and to direct his hands to pick up his tea cup and get it to his mouth, sometimes he did not spill anything much.
Those were the days, when there would be tea left in the cup for him to drink, I remember reading this in 1988, and being impressed and moved by how bravely he coped.
At the time I had no idea that 23 years later, I would also have to cope bravely with my own degenerative disease, being brave was not how I saw myself or imagined I could be.