I’ve always thought of the word website as the singular word to describe a home for a person place or thing (noun) on the Internet. I don’t like web site or web-site, so website, it is. I’m kind of paving a new path here, creating a new version of my particular location in the World Wide Web. It’s nice. I like it. I’ve been toying with doing this for a while, and now it’s done. For a long time, I was simply forwarding to my Tumblr blog, but I’m afraid it just wasn’t malleable enough to keep up with changing times. So I’m planning to make the most of this.
For everyone wondering what John’s up to, what he does, as much as he can, is writing. I started up again not too long ago, picking up again with National Novel Writing Month (NaNoWriMo) Which happens every November. Every year there a group of thousands of fiddling novelists get together and collectively, across the country and around the world give it a go at writing a fifty-thousand-word novel inside of thirty-days. I know, it’s not a long novel. A couple of times it was a great way to start then finishing longer work outside the time frame, but it’s still a great way to start.
I practiced. I was getting stronger, using my arm as much as I could. I played games. I swiped. I got good browsing and reading in my kindle app. I decided to train my right arm, I wanted to try Novel Writing month again despite my condition, with Plants vs. Zombies. At first, I could barely keep up. I waited. I trained more. I tapped and tapped, and started completing stages. Soon I completed the game. I figured if I could keep up with that, I could use similar motions to tap letters on my iPad onscreen keyboard. I completed the novel in thirty days. I didn’t say the first draft of it isn’t a nightmare, they all are, but this one is particularly bananas. I left crazy errors behind, trying to whip whatever story was there out, but I was pretty uncoordinated still at that point and I know there are pages and pages in there where I’m doing good to spell anything intelligible.
I’m still committed to editing it though. I’m going to run it through Grammarly and close my eyes. More on that soon.
This week I’ve been World building on my next piece of work. I decided I wanted to map out a series of star systems for a space adventure, but I wanted to be able to keep track of which planets were parts of different governments, and be able to tell which side which planets are on like unwashed a big interstellar game of Risk. Will it help? I’ve no idea, but it’s generating lots of story ideas, which is great.
As I was doing all this, I took a Masterclass with R. l. Stein on writing, and got to meet him on a live video chat. One of the most interesting things to me about his class to me, odd note, was the fact that he writes everything with one index finger. Here I was using a stick to punch out words again, one letter at a time. I was already writing with no fingers.
For anyone I haven’t told yet, In 2016 I came down with an abomination called Guillain-Barré syndrome. Leave it to me to succumb to something I’d never heard of. We call it GBS for short. It knocked me flat on my back, and I mean that literally. For some, it amounts to partial paralysis. You dip down, then come back. Not me. I got the next to the worse variant. The one that doesn’t quite kill you, though it nearly did on several occasions. It’s an auto-immune disease that attacks the nervous system. It strips what’s called the myelin sheath that protects your nerves, helps them conduct the electric impulses that allow you to say, sends signals from your brain to your legs when you want to walk or hand when you want to pick up a fork, or eventually your lungs. It starts at your feet and hands and works it’s way up. The variant I had was nasty and nearly killed me. At my worst, they had to tape my eyes shut at night because I could close them myself anymore.
I was locked in…
I spent eight months in three different hospitals, had to undergo a tracheotomy and lived on a vent for five of them.
When I returned home I still couldn’t lift my arms. I need pretty much round-the-clock care. These days I’ve got some strength in my legs, and my arms are pretty good. My fingers are still very weak, and I can barely feel my feet. I’ve still got a long way to go, but I still have faith that I’ll walk again. I have physical and occupational therapy each twice a week, as well as a nurse’s visit once a week, and a nurse in to help me bathe. I used to also have speech therapy, but no longer need it.
I’ve successfully learned to speak again. That was some time ago.
I’ve got a lot to say about my time in the hospital. Much of it I’m still processing, even now. I’ll have a lot more to say, and I plan to drip that out. I’ve got a lot of memories from that time that doesn’t make a lot of sense. I spent large amounts of time hallucinating, or stuck in dream-like states while my brain and nervous system was growing back together. My mind did the best it could during that time while everyone was just trying to keep me alive.
As time goes on I’ll tell what I can. I get a lot of requests to write about it, but each time I open that part of my mind it’s too depressing to look at all at once. Maybe in blog form, I can talk about it in little chunks. Some might be longer than others. Some of it is pure dream-state madness, but I’ve got so many junk dreams mixed in with what was real that for me it’s very hard to distinguish. I’ll get there.
GBS was the end of an era for me. I lost everything except my family. I am incredibly grateful to them. I need lots of large medical equipment just to get around. I need a Hoyer lift to get out of bed. I need a powered wheelchair. It’s necessary for me to use a hospital bed. I need to use a stylus attached to my palm with a brace to type this and use my iPad. I lost my house. It was impossible to get my power chair through the door. It would have been cost-prohibitive to get me in the kitchen door, and then I’d be restricted to the ground floor with all the bathrooms on the second. The car had to go too. Carmax was happy to see it. We combined that cash with funds from a gofundme campaign where a ton of very generous people aided us in getting our ramp van. That donation is so appreciated. Couldn’t think of returning to work, not that I could get there from two-hundred miles away now. (Hi guys!) I can’t get to the bathroom without help. Coding even a little is a laborious process with essentially one finger. I think my days of commuting twenty miles by car to ride the train the rest of the way into town to hike another block, uphill to the office and back are over for me. I do miss walking around Piedmont Park at lunch though.
I’m coming along. Occupational therapy is still working with me on my fingers and physical therapy had me on the edge of the bed last time pushing like mad on this big platform walker we got recently. I’ve got more equipment coming to help me exercise and work what I do have.
October 31st is coming up, and we usually try and add something new to the decorations each year. I’m not sure about everything else we’re going to do, certainly see if Garry the Grim Reaper is still going to inflate again for the third year in a row, but I’ve got some of my new ideas heading here in the mail right now. Garry is already a fourteen-foot-tall purple skeleton guy with a top hat that has a lightning flash inside him. Our yard gets noticed. We get a lot of trick-or-treaters and enjoy the night the best we can.
This year I know for sure that I’m going for a ground fogger, so that’s on the way, along with a rolling cart. When it’s time to turn off the lights and stop handing out candy, I want to be able to easily roll it into the house instead of trying to pull it away from other decorations or leave it outside. It’s got an ice bin for either ice or dry ice to keep the fog down on the ground. I hope it does well. We had a good fogger last year, but I accidentally got one I had to activate manually every time, and my thumb was sore at the end of the evening. This new one, a Mister Kool, has a timer. Looking forward to it.