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About three years ago I got very sick, in May. Sleeping all day, huge cognitive impairment, visual impairment, and head pain consistent with encephalitis. They never found the virus that caused it, but my visual and cognitive symptoms took a year to (mostly) remit
I spent May, June, and July in my apartment for the most part, in between getting blood tests and spinal taps. I hoped they would figure out what I was infected with, but no luck. It didn't really matter, though, because I had to work on recovering. I was able to travel by August
When I get tired or stressed, still, I go back to where I was then - my vision crosses again, and it gets hard for me to think or choose words. I get much more tired than you would expect and I have to spend a few days in bed to get back to normal. They call this Chronic Fatigue.
But as several doctors (research and medical) put it, all "chronic fatigue syndrome" really means is I will continue to experience long-term consequences of a viral traumatic brain injury, which we don't understand the origin of or know how to treat.
Which brings me to COVID.
Which brings me to COVID.
The life-threatening aspects of COVID, the pneumonia and cardiac symptoms, are paramount. But there are also reported neurological symptoms, possibly as high as 30%. Many people are distressed by the loss of smell and taste. Neurological symptoms feel like losing yourself.
For some survivors, this virus will change their bodies and minds, possibly permanently. Some previously "healthy" people (as far as you or they knew) will find themselves with disabilities they didn't expect and which can't be seen. We won't know how many for a long time.
We can and should and will do research on this, in the months and years to come. But my concern is more proximal. We tend to gaslight each other, and ourselves, about invisible symptoms, especially neurological. We tend to push ourselves and each other too hard.
I'm here to say that life goes on even with a neurological disability - though I am lucky. But I'm also here to say that it is real, and that it is vital that we acknowledge our humanity - that we prepare to adjust our expectations, wholesale, as people adjust to new bodies.
also I made many good tweets in an attempt to keep myself entertained while indoors a lot including commemorating my spinal tap with Spinal Tap https://twitter.com/shrewshrew/status/872076828655144961?s=20
and this thread of weird and nice and interesting gifs which is still one of my favorite things I have done https://twitter.com/shrewshrew/status/873170487190441985?s=20
