I’m writing this Tuesday night, although I will probably post it Wednesday morning given how many posts I’ve made close together today. So “today” = March 28, and “tomorrow” = March 29.
I had a meeting earlier today.
As far as I can tell, I was told things like, “If you go with the fandle norblit plan, then this would galleb the noodwer sifdong in the pollafied tridge. But you’d have to do a feeping drudsy mardenforig if you want diens to rowify. And werin on zabfor invilsiddy porren the fandle norblit again so you can get the mardenforig set up.”
Of course, there were actual English words in there. I could even probably have repeated the sounds of them at the time. I could not make them lodge into anything remotely tangible in my brain. Even when I got the sounds right, they just wouldn’t touch anything. I tried banging them against my brain for awhile and gave up. The same thing happened when I tried to read the papers they had given me at the last meeting.
It’s going to be interesting when whoever is involved in this, finally notices exactly why it takes me so long to do anything official. It’s because I end up either having no clue what anyone is talking about, no clue how to talk about what I need to talk about, or both at once for even more fun. The world moves much faster than is possible to keep up with, and sometimes its regulations and such insist that I move along with it, faster than I can actually go.
Get me reading or writing about human rights, or autistic people, or certain aspects of myself, and you will find someone who is, at times, incredibly articulate and literate. Get me off of those few topics, or get me into the wrong approaches to these topics, and you’ll get someone who can’t say or understand a word.
I have a meeting tomorrow. It’s about my hands. Which are not, as far as the tests go, experiencing carpal or ulnar tunnel, or if they are, it’s too mild to show up on the tests. We’ve of course now learned that I’ve got a lot of things that would point away from carpal or ulnar tunnel as being the main cause (although I do suspect I’ve got a mild version of one or both of those in addition to whatever else is going on) of pain for me with this RSI stuff, but the hand doctor has cut me and my staff off so much that it’s impossible to get a word in edgewise. Tomorrow he is likely to make some sort of ridiculous pronouncement based on the tests.
Hands are not my best area of understanding. I am not good at communicating every little nuance of pain and other sensations, even when someone is poking at them, especially when someone is poking at them. My hand doctor is someone who believes in rushing patients through appointments so fast you barely know what hit you, and not bothering to listen to anything he doesn’t find important, as far as I can tell. Among the things he didn’t find important last time were my finger that I can’t straighten, which hurts a lot periodically, and which can’t be fixed surgically therefore it’s not even important to him to tell me why I can’t straighten it (it’s not broken or arthritic). This is probably not good for anyone, but is especially bad for an autistic person.
So tomorrow I get to go to another meeting. One in which I may or may not understand a word that’s being said. One in which I may or may not receive some of the ultimate medical insults (I always love how when something isn’t what a doctor expects, many of them blame the patient). One in which I am very likely to, unless this hand doctor changes drastically in his approach and outlook, decide to find a hand doctor willing to spend enough time to look at all possibilities. When you’re dealing medically with an autistic person, it doesn’t matter how verbal we are or seem to be, you can’t just assume that we’ll tell you the most important facts, so you have to do more work, not less. All I know is that I’m not imagining my hands hurting, and I know what my brain can and can’t generate and this version of hand pain is not in the “can” category.
But my brain is only barely even turning towards hands. For me, writing is like trying to catch a thermal: I can choose which but they have to be there. There are no thermals right now leading to the information that will help me out at an appointment with an obnoxious hand surgeon. I can’t even get myself too worried, because I can’t imagine what tomorrow will be like. I just know that with the blankness towards hands in my brain, I’m very likely to be hit out of nowhere if he decides to be too awful. And if meeting with people who wanted to take the time to communicate with me, today, was bad for comprehension…