Rodney Dangerfield used to say, “it ain’t easy being me!” I feel that, but I’m getting respect. About every doctor I’ve seen has taken a look at my chart and said, “I’m amazed that you walked in here under your own power and can talk to me.”
I’m a fortunate person.
Over the last couple of weeks, I’ve found myself thinking about this scene from The Matrix: https://youtu.be/cGeoB8czHo8
I often feel like this – I want to will myself to get back on my feet and join the action.
Right now, on July 21,2020, I’m living my new daily experience. I’m self-aware, thankfully, but there are a couple of things I’m coping with.
The most striking thing (for me, anyway, not outwardly obvious from what I can tell) is a big reduction in sensory processing. My vision seems to be working basically, but it’s a bit messed up. The obvious thing for others is to wonder if my blindness in my right eye is a factor, but I don’t think so. I can say there are 2 things I’d like to change with my current vision: 1. The signal has a little snow, like you’d see on a TV. I can see the stuff I look at, but my vision is grainy. Granted, I’ve needed glasses for years but this is a new thing for me. 2. I think I’m absorbing less in my field of view. For example, if we’re riding in the car and there are billboards or interesting cars or people to discuss, but unless I’m directly looking at something it doesn’t seem to register. I’ve always been good at absorbing and processing everything in range and being able to talk about what’s gone past. That’s an important part of driving, to be able to keep track of cars around you or possible hazards somewhere in the path. Think about walking down the street and the same thing should happen there. Are there things on the sidewalk to avoid or step over? A puddle? There’s working memory for field of view, and that’s not completely functioning for me right now.
My guess is that auditory processing isn’t doing the best filtering for me when there’s lots to hear or stuff going on. That’s just something I can work on, and it’s not debilitating. A little frustrating, maybe.
Ok, another thing about my brain: it’s a big challenge to be part of the real world, and it’s exhausting.
Every day, all day, I’m in a fog and I’m struggling to get out. There is a metaphor I’ve come up with, and I think it gets the point across: imagine you’re sleeping in bed and someone breaks in to your home and grabs you and ties you up so you can’t escape. Instead of robbing you or worse, the intruder drags you outside and ties you to a huge rock so you can’t escape. You find yourself in the yard, all tied up and unable to get out. Then it starts raining, which sucks, but you’re not wiggling out of this. There are ants crawling all over you, which is annoying. And you get to watch people walk by, who wave at you and say things like, “Wow, it looks like you’re stuck! How brave of you to deal with this. What you should do is just untie yourself and go inside.” That’s not too far away from my current experience, and it’s just as frustrating as it sounds. There’s a barrier between reality and me, and it’s a lot of work to push through it or around so I can function.
I need to fix this. I really hate what this has done to me, and I’m determined to resolve it. People recover from similar brain injuries, and I’m encouraged about what I’ve kept. I still have my memories, sense of self, and my absurd sense of humor. I haven’t lost my capacity to love and feel, and there’s a whole lot of scheming going on so I can figure out how to untie myself.
I’m trying hard to get back into my job, and I can feel that I’m on the threshold of getting my brain to behave. I’m extremely fortunate to work with supportive and understanding people, and it’s a job I can get back into. It’s all brain work, so it’s good that much of my capacity to read and understand the subject matter is only bruised and getting better.
The hard thing is that I still can’t untie myself. Instead, I need to find people who can help and get things moving. Most people I’ve run across who ought to be helpful aren’t much good. I’ve gone to see people who should be competent, but there’s a big tendency toward snake oil among so-called “therapists” or other “natural health practicioners.” Luckily, I’ve had a highly-developed bullshit filter for a long time and that survived for me. I’ve met plenty of people charging money for imaginary cures, and I simply have no patience with that. All I want is to see the results of the controlled scientific study showing the “treatment” is effective. Just something peer-reviewed and published in a respected medical journal, and that is acceptable.
In the meantime, I’ve got healing to do. I have a long, rewarding, and purposeful life ahead of me, and I’m looking forward to putting all this behind me as soon as I can.
I’m not going to let this situation go on. I’m going to live a long time and be the loving husband, father, family member, and friend I am. I’m going to be the same capable, adaptable, and happy guy I am when I’m in my element.
I’ve been hurt badly, and it’s hard to live with right now. But that’s all going to go away. I’m going to work extremely hard to get untied. It’s really difficult to maintain my drive and focus, and I have given myself no options. To me, it’s not an acceptable option to put up with these things and I owe myself and my family a lot more commitment.
About 25 years ago,I adopted this quote from Noam Chomsky as a statement of purpose/motto, and it was something I believed before I read it but these words resonated with me:
“Optimism is a strategy for making a better future. Because unless you believe that the future can be better, it’s unlikely you will step up and take responsibility for making it so. If you assume that there’s no hope, you guarantee that there will be no hope. If you assume that there is an instinct for freedom, there are opportunities to change things, there’s a chance you may contribute to making a better world. The choice is yours.”
I am, by nature, an optimist. I fully embrace the obligation to make the future better, and I’m going to do my part to make it so. It’s a bit obvious where my situation is concerned, but that’s just the start. It’s not just my future I’m concerned with. I think I’ve got more to do, and there’s a lot at stake. It’s going to happen. I’ll make sure. I’m expecting that I’ll have more entertaining and exciting things to write about again, and it’s not going to be a tragedy.