May is HD awareness month and my awareness of my own HD increased greatly when I fell on my a** Friday night.
I was allowing myself to be dragged to a play and just one more time I had wanted to wear shoes with a little lift. But I tried to walk backwards in them and that set off a slow motion, reverse fall to the ground.
I went to the play, but was too sore by intermission to stay. It pretty much ruined everyone’s weekend because I was laid up with a bruised hip and not happy.
When I fell Friday night, my self-perception landed outside of me, like a camera, giving me snapshots of where I’m at now, in total:
Besides poor balance, I can’t remember life events. There are chunks of my life that just aren’t there and I don’t know it until someone mentions it.
I have trouble doing simple things like making phone calls.
I have unrealistic ideas and I expect things around me to be the way they always have been, but they can’t be, because I am getting so much worse. I can’t be treated the same way because I don’t act the same way.
The most insignificant things, like making simple choices, are huge, emotional deals that are liable to piss me off or leave me with hot tears of frustration.
Even thinking of reaching out to friends feels like running underwater, so I stop before I reach. I’m afraid I won’t reach them and if I do reach them, what is there left of me to connect with? I miss you, James and everyone else, and I am sorry.
Ever since Friday night, I’ve noticed that the memories I do have are from someone who existed two personalities ago. That the changes in who I am have been stark and permanent.
Today I have been overwhelmed by the notion that my family needs respite. That I have pushed everyone to the edge.
But they tell me no, today is a new day and things are OK and I am trying hard to let that sink in.
Because, with HD, the promise of a new day brings with it the promise that I’m slipping, I’m falling.
And worst of all, I’m becoming a stranger.