So That Happened…
I think I'll avoid the usual end-of-year and new year posts. I seem to end up jinxing myself by writing about hopes and plans for the coming year.
As you probably guessed based on that opening paragraph, 2021 ended up being another rough year. It is the main reason I haven't posted here since January, and I have been almost as inactive on social media as a whole.
The issues with non-speaking episodes and aphasia I mentioned last year continued to worsen until writing anything became difficult enough to force my departure from freelancing by the end of April. I received a neurologist referral before the end of 2020, but there were no appointments available until March. That started an almost year-long bout of visits, imaging, bloodwork, trials of different medications, and visits with even more specialists.
Despite the incidental discovery of a Chiari I malformation and hEDS, we still do not have definitive answers regarding the cause of these aphasia and non-speaking spells. But, I do at least know why I have lived with tinnitus, chronic pain, and the seemingly random loss of sensation or function in extremities since the mid-1990s.
The best guess is autistic burnout is causing aphasia and some non-speaking spells, which explains why they worsen with stress or overload. Other times, we believe the inability to speak is wholly physical.
EDS, or Ehlers-Danlos Syndrome, is a group of related genetic disorders affecting collagen, one of our structural proteins. The type I have, hypermobile EDS, is the most common and mildest form, and it primarily affects the joints. The collagen holding my joints together is stretchier than it should be. The faulty collagen causes them to stretch too far, slide around, and dislocate.
The working theory is my top two vertebrae can periodically shift and pinch the root nerves extending from them, effectively cutting off my control of the fine motor control needed to form words or paralyzing the vocal cords themselves. It persists until the joint shifts back into place and relieves the pressure.
The difficulty I have articulating before and after some non-speaking episodes supports this theory. Additionally, non-speaking individuals can often still sing and use echolalia since different brain regions control these skills. Yet, there have been times I would end up in a convulsive coughing fit if I tried to sing or use echolalia during an episode because the vocal cords would not respond.
It is also possible periodic changes in cerebrospinal fluid (CSF) circulation or intracranial pressure due to the Chiari causes some episodes. Chiari I is a congenital malformation of the skull resulting in pressure on the cerebellum and spinal cord as the lower part of the cerebellum descends into the top of the spine.
The cerebellum plays a role in our balance and essentially smooths out our sensory perception and muscle control. A compromised cerebellum makes controlling your movements difficult, and your perception of the world begins to feel like trying to run a first-person video game with a massively outdated video card and insufficient RAM.
All of this has been to say, 2021 was a year of discovery where I managed little outside schooling the kids and surviving. For a bit, between the onset of odd symptoms and discovering they were the result of a bad reaction to my pain management medications, I wasn’t even sure if I’d manage that most days.
The bulk of the creative work I’ve managed throughout the year has gone toward product development and branding for reviving Contented Comfort as Contented Comfort Designs. Much of the revamp was the brainchild of my eldest, Rio, who wanted to use skills built over the years to help others with neurodivergences, anxiety, depression, or other conditions. Rio came up with the mascot, logo, and banner design. I’ve simply been working on the web copy, artwork for our card lines, and developing a natural toothpaste recipe we can mildly flavor for those who cannot tolerate the overwhelming flavors in most commercial toothpaste.
While I have periodically attempted to return to writing, both fiction and nonfiction, doing so is still far harder than it used to be. My ability to focus to the degree needed is weaker than I remember it ever being before, so the time taken to form arguments and make them coherent has grown dramatically. It doesn’t help that I need to take periodic pauses to try and search out words I know I have in my vocabulary somewhere but cannot access through memory alone.
I have managed to start on a few fiction pieces, but I rarely manage more than a dozen or so paragraphs in a given day. So releases will be ridiculously few and far between unless and until I can regain former levels of focus, concentration, and language fluency.
I think this disparity between what I can think up and what I can express is why I turned to The Sims 4 over the past year and a few months. I started telling stories to myself using dolls and toys the same as most kids. What is The Sims but a modern version of dolls with a basic AI adding in a bit of chaos?
Funnily enough, I think that has been at least partly responsible for what fiction writing I have managed this year. Creating engaging storylines within the game, even when set strict parameters by challenges I was playing, built my confidence back enough to try after multiple failures had decimated it.
I might not have posted let’s play videos of these stories as I talked about, but that doesn’t mean the stories never happened. I grew frustrated with the editing software I have. Embarrassment at the obvious processing delay I have and how near impossible it is to hide in videos added to that frustration.
I’m playing with a new idea to manage let’s play videos and make them engaging anyway, but I don’t know if it will work. After thoroughly enjoying a particular legacy style challenge, I have created my own inspired by it, and I would love to be able to share a play-through of it. Yet, I know most will not enjoy watching the game given how long it takes to process the interaction wheel, so some means of compensating for this is necessary.
Nevertheless, I have shown some improvement over the past month or so since swapping pain management medications and continuing to recover from autistic burnout. I hope such will continue once we are past the stress of the holiday season and launching Contented Comfort Designs in late January.
Now, enough about my year. I want to hear how yours went. Please tell me down in the comments.
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A. B. England is a novelist, all around geek, avid crafter, and the home-schooling mother of two.
She is an autistic creator with a love of mythology, fantasy, and all flavors of science fiction.
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