If you normally come here for optimism and positive outlook, this might be a good post to skip. I promised you honesty above all else, and I’m honestly not feeling very optimistic today.
As time passes, I’ve learned to expect the unexpected from Parkinson’s. It’s surprised me with several unpredicted outcomes, some positive and some not so positive. Sometimes, it’s the physical and mental impact of the disease that’s surprising; sometimes it’s the unforeseen result on my relationships and social interactions. Sometimes I rise to the challenge; sometimes, not so much.
Parkinson’s is a thief, and a sneaky one at that. It’s never honest about what it steals; it gets you while you’re not looking, and takes things you never had the good sense to value, but turn out to be central to a good life.
Parkinson’s is stealing my ability to communicate. I always took my ability to explain, to comment, to describe for granted, and I didn’t realize how fragile it is. Not being able to communicate my thoughts and feelings without extreme effort is devastating, and it affects every other part of my life. It seems like such a simple thing, but Parkinson’s gets in the way at every turn.
I’m typing this blog post, because my voice recognition systems no longer recognize my voice. Siri and Alexa don’t know what I’m trying to say. Dragon Dictate tries harder, but they all three come up with novel (and sometimes amusing) interpretations of my faint, garbled, slurred statements, and it takes more effort to correct them than it’s worth.
Typing is a little easier, but only a little. I don’t coordinate movement between my two hands very well any more, so I have to type one-fingered. I occasionally can still think with some alacrity, but I type so slowly that the thoughts often get lost. My writing is less nuanced, and I often find myself taking shortcuts in my writing, opting for the simple and short rather than the complete and expressive. That may be a good thing.- I don’t know. I do tend to run on, but this externally imposed brevity is frustrating and irritating.
Although I sometimes can still think with near “normality,” I often think as slowly and incompletely as I write. This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say. My interpersonal communication as well as my written communication are altered by this impact; even with people that know me well, I perceive that there’s a “pulling away” when I’m struggling with a simple conversation or fighting to respond to a question. It’s a negative feedback loop, too – the harder it is for me to talk and have simple conversations, the more I shy away from them. I’m becoming more socially isolated, because it’s just exhausting to try and have a simple verbal interaction with someone.
I read a science fiction short story many years ago that’s been bouncing around in my brain recently. The author is Harlan Ellison, who is not a man given to stories about unicorns and butterflies in the best of circumstances, but this story was especially dark.
A short synopsis: sometime in the future, a computer system named AM has taken over and killed everyone on earth except for five people, who it keeps alive to torture. AM is very good at what it does, and is unlimited in its ability to cause misery and suffering. The protagonist of the story briefly gets the advantage on AM, and releases his companions from their misery by killing them. AM takes his revenge on the protagonist by changing him physically in ways that are too horrible to describe, and keeping him alive to torture for eternity.
It’s a little over the top, but I can’t seem to get this story out of my mind. There are obvious parallels to what’s happening me as a result of Parkinson’s. On my better days, I can laugh off the comparison. Sometimes things get dark, though, and the parallels bother me.
The title of the story is also a little over the top, but it gets at the feeling of horror I occasionally have about what’s happening to my mind and body, and my feelings of claustrophobia, of being imprisoned in my own body. On my worst days, it gets close to the feeling I have about being unable to express my most basic feelings, of being unable to defend myself in the most elementary disagreement, of being unable to correct a simple misapprehension or inject my belief and views into a conversation. My inability to be the “me” that’s still in here, but is trapped and voiceless.
I have no mouth, and I must scream.