I pride myself on holding everything together mentally, but had a moment today that was hard to explain.
One important note – this is not a sympathy post. It’s more an explanation & self-record. I will talk frankly about my condition, but only because we’re geneticallly linked.
I’ve been dabbling with voice acting in audiofiction recently & have had the absolute honour of working with some proper pros (I’ve added links below, because if you haven’t discovered them oooh you’re in for a treat). Now, part of live action roleplay podcasts is that there’s no script & you have to think fast. This ticks so many of my creative boxes and I love it. It’s a world where I’ve mentioned that my body is a bit wonky, but I can generally set my stupid physical self to the side & have fun. So based on this, I mask a good 80% of what’s actually going on, and some people don’t know at all.
So what happened?
I was mid flow with my warlock telepathically interrogating a player when the brain fog descended and I asked a question with complete confidence & they just sort of looked at me…
The words I’d said bore no relation to what I meant to say.
I snapped out of where I was & managed to brush it off and said sort of what I actually meant. And on we went, albeit a bit foggy.
So what actually happened?
It’s something called Transient Aphasia and is similar to the aura stage of a migraine. One minute I’m bright as a button & the next I’m talking absolute crap and am not consciously present for a few moments. It’s a bit like being in a vivid dream where no-one can understand you. It feels like ages, but it’s usually seconds.
It’s embarrassing when you build a persona around being on the ball & intelligent.
Aphasia can be triggered by any number of weird things going on with my body.
I take a drug called gabapentin which was developed initially for epilepsy, but treats the nerve pain caused by frequent dislocations & spinal injury. It does it’s job, but does so by impacting on my brain’s ability to create new synapses. I have to work extra hard to remember things. Helpfully, in addition to jellifyig my once super sharp mind, it can also trigger Broca’s Aphasia (when you lose words but understand others).
This is why poor Mr Geek has become a mind reader of what “The Thing… The THING” might actually mean at any time. Weirdly, I can still explain an adjacency matrix for Djiksta’s shortest path algorithm, but can’t remember the word for Spoon.
Then there’s the main reason for my migraines – cranial instability. I’m still mightily pissed off that my own spine is putting pressure on my brain and causing occasional cf leaks (yes folks, that’s where pressure builds up & my brain juice leaks out of my nose or ear – who says disability isn’t sexy??). So these migraines can take 24 hours to get going & early sings are whoosy heads & Wernicke’s Aphasia (the kind where you talk crap & have no idea you’re doing it).
Treatment for spinal instability in the UK is pretty much non-existent and after long discussions, we’ve agreed that I don’t want surgery anyway. Since being diagnosed with Ehlers Danlos I got the answers I needed and frankly don’t want to be poked & prodded more for a genetic condition that has no cure.
I make a point of not dwelling on it too much, but cringy moment’s)l like this in front of people I really respect, make me so frustrated with myself.
So, on a lighter note here are the podcasts I promised (these are all podbean links & not promotions):