I’ve been noticing it, but it’s not something to shout off the rooftops. It’s something not to draw too much attention too. I can’t always ignore it, though, and when I do it does make me unhappy.
February 1999
I’ve noticed that I never write about my physical condition. Peculiar. It’s not like it doesn’t matter. After Christmas I started feeling unsafe at home. My ability to walk has taken a dip, my balance in particular has gone downhill. I walk to the tea parlour with splints. My arms have declined too. I’m having trouble lifting things, even so much as a spoon when I’m eating soup. Typing and drinking tea out of a cup have also become tiring. Speech was trying for me in December, but has improved since then. I’m still eating normally, except for raw endive. I have started chewing slower and more deliberately. Being alone at home isn’t that bad. Using the bathroom isn’t a huge problem. Wiping is actually a bit difficult, but I manage. Same goes for hiking up my trousers. I can’t wash my hair and lower body while showering. Hein helps me dry off and get dressed. For the most part I can get dressed myself. I’ve ordered a speech box and a smaller keyboard. I’ve also been training with my typing aid.
I don’t write a lot about sadness. My crying fits mainly occur when I think about the future. About not being intelligible when speaking and more recently how tired my arms get. One of the worst ones is when my family leaves to go to a theatre play or something like that, and I’m stuck at home alone. Oh, how I cry and pity myself. However, I don’t allow myself to get upset for too long.
March 1999
My lungs got tested, their capacity has decreased by 25%. By now there’s always someone home. Everything is harder. Drinking from a straw, hiking up my trousers, eating without spilling food everywhere, shifting in my chair, standing up, typing, etc. I’m still doing fine, though. I got a nice email from Steven Shackel, the Australian. He’s doing great and is doing a lot better recently. Mentality is paramount.