I've started a glossary of terms consisting of words I'm choosing to use as a small revolution/reclamation from the terms imposed upon my body by the colonial ableist medical healthcare system
Describes a long term serious brain condition, chiari. This is mainly used when it is getting in the way of everyday living.
Used when I need to ask for alternative access arrangements, I find this empowering, mainly because my alter ego is a diva, and being sick allows me to play this out, but also because it adds an element of lightheartedness to an actually really serious flipping element to my life actually, okay, cool.
The name of the documentary I play in my head of me doing everyday tasks with a chronically sick body, like putting chicken nuggets in the oven for the third time that day because no spoons*. I imagine one day Chronicles will get picked up to be one of those weird documentaries on channel 4 and the presenter will film me talking about the time the social worker asked me if I pass out sometimes when having a poo, and I had to admit sometimes I did and then my mom cried and it was all. a. bit. strange.
· *No Spoons
Used in relation to the spoon theory, which uses spoons to describe units of energy, therefore No Spoons = No energy (mental or physical). Used again for distance of pity and universal understanding amongst family and friends.
To be continued