Sometimes I feel like I am starting from zero. In the last December, my mother died. I have felt like everything has turned upside down since then. I stopped writing my blog, leaving everything here on the webpage pretty static, which is sad because I just restarted this website. I deleted my Twitter account because I thought Elon Musk was being an ass. I deleted my Pinterest account because I deleted my Twitter account, and I was on a roll. I didn’t miss that one until just yesterday or the day before somewhere. I deleted my Instagram account. I deleted it because I felt like it, and because I barely used it. I had no idea what to use it for, but it feels like I ought to have one, and that I ought to know what to use it for, and that sort of confounds me. I didn’t kill Facebook though, but that still doesn’t mean I know what to do with my author page.
I’ve been struggling, to get started on a new book, while two people are reading the next book I intend to publish in the background. I’m not sure when I will get feedback from them, and I’m not sure how much I will change the books based on that feedback anyway, but it’s out for feedback, and that’s the way it is. It’s the second of my Dead Detective series. I’m hoping to have it published in the next couple of months. I keep trying to start this other book and I keep hitting a brick wall and turning around. It’s not exactly writer’s block, because I have other ideas. I just really want to develop this one, but it’s slow going.
Today I think I just wanted to get something out so that I wasn’t sitting around not having gotten anything out. Some days that’s the way it feels.
My health seems to have stagnated. I can’t honestly tell how much of it’s me being scared that I can’t move forward, or that I just can’t move forward. My left leg depends completely on compression hose or else it swells up like a giant balloon. I have to get them on early in the day or I’m not getting up. The trouble is I am stuck in a pattern where I forget to ask for it before it’s too late. It’s partially on purpose and it’s partially a habit that I’ve formed and it’s time to break the cycle. Especially since Wednesday, I want to get up because the lady’s coming to cut my hair. I need to get up a lot more often anyway, maybe I can use that to break my cycle.
I want to share more of what happened to me in the hospital, and I don’t know what the best platform is that I need to do it on. When I was initially suffering from Guillain-Barré, I was on some pretty heavy stuff to ease the pain and allow me to sleep. I slipped through a large portion of it in a coma, but I spent a large amount of time during that period doing what I can only describe as dreaming. Sometimes they were dreams where I went on strange adventures. Sometimes I faced some of my worst fears. Sometimes I could see things in the room around me, that I knew were not there. I visited places that don’t exist, and I’ve had a couple of NDEs. Sometimes I visited some of these dream places on multiple occasions in what I feel is great detail. I remember many of these experiences or dreams or whatever they were, just like they were any other memory to me, and that is the scariest aspect of what I experienced in the hospital.
I still have fight in me, but I no longer have the support of any kind of home health therapy situation. They have all come for multiple series of visits, and they have all come to the conclusion that either I have not progressed enough for them to continue, or I am not currently sick enough for them to continue. Now I think that’s laughable because I still can’t get out of bed on my own under my strength, but that doesn’t seem to change their opinion, even if I can wiggle my legs a lot, where I couldn’t move them at all at one time. So I have to figure out how to do this on my own, and I have to tell you it’s a lot easier when there’s an appointment and someone is coming to help me at a certain time to do some kind of exercises who has a stronger back than anybody else in the house. I’m committed, and I’ll figure it out, but like the social media accounts that I blew away above, I feel like I’m starting at zero. Maybe that’s a good thing. I think the only way therapy is coming back is if I do more hospital time.
So, I have a whole lot of things in my brain. They are experiences that I want to have, that I can’t have with this body, at least the way it is now, the strength level. I don’t have any core strength. And by that, I mean pretty much zero core strength. I’ve got a good bit of arm strength, but my hands don’t want to participate very much. One hand is curled up and doesn’t extend like it should. It’s technically flexed 100% of the time which is stupid because it’s kind of a strain on my arm for the shortened tendons or whatever’s pulling the fingers back and the other hand is okay but neither one of them can hold a fork. I’ve got this collection of what I call bicycle handles, that you can stick utensils or a toothbrush in and I can hold that, but it looks awkward and it’s heavy and some days are better than others. The weather does a complete number on me, and if a front comes through, it can make my arms hurt like heck despite any medication. It can get bad enough, that my only escape from it, is to pass out. This is not a choice of passing out, this is an “I have hit the absolute end of my pain threshold and the only way that my brain has of dealing with this is to pass out.” I don’t like days like that at all. It’s not that I’m not in control to the point where I couldn’t handle getting moved back into the bed or dealing with some problem or issue or making a decision, it’s just that I reach this point where I’m like “I gotta go to sleep,” and I lay there and think “I hurt too bad to deal with this right now.” I hug a pillow that I keep in the bed with me, close my eyes and listen to something, and try to go to sleep, and usually, before a minute runs out, I’m out for a few hours. Some days I put on headphones and listen to a recording of the rain, and sometimes I put on headphones and listen to rock music because it gives my brain too much to think about and I forget to think about the pain for a minute and that puts me out.
I have all kinds of adaptive ways I can do what I need to do. I’ve got software for dictating things like this entry into my computer. I’ve got an adaptive Xbox controller, that I can use with all kinds of games on my PC. That thing saves my life sometimes. It’s got inputs for all the buttons that are on a standard Xbox controller, but I only use a few of them. One of the things that I do like is that I can make the jump and the attack buttons use these two giant buttons on the controller with my hand. It’s easy to jump and swing your sword when you don’t have to worry about getting a single finger down on a keyboard key and you can use your whole hand to smack the big button.
Another problem that I wrestle with in my mind, is the idea of creating a YouTube channel. Besides the fact that I have no idea what kind of subject matter I would choose, it’s an almost insane idea for someone largely confined to a bed to get any footage beyond that of my crusty old face. I keep thinking it might be interesting to make some kind of animated thing, but that also requires a good deal of fingerwork on the computer that flat-out tires me before I can complete much. I don’t know, maybe I’ll figure it out at some point.
My daughter is a budding artist with a complete hatred for AI art. I see it as a tool that will never go away, so we may as well embrace it and learn to integrate it into our lives as a tool at our disposal. The header image for this post is AI art, created by Adobe Firefly with the prompt “starting from zero.” It’s better than I could create, and since my daughter hasn’t had the “hey, commissions can earn cash” lightbulb go off in her mind yet, I guess it’s AI art for me for a while.
Thanks for reading my rambling update.
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