I had intended to write here quite a bit more than I have on disability. This is really saying something. Eighteen years ago I had viral encephalitis. It damaged mainly my temporal and parietal lobes. Making any kind of statement is remarkable.
For most of that time, I did not have much of a disability identity. While I had various and sometimes overwhelming reactions to what had happened, I rarely used the word “disabled” itself. It was more like “Something happened” followed by various negative emotions mixed in with a lot of confusion, mixed in with a kind of clarity I struggle to explain.
The word I’m most likely to use in my own head is “brokenness”.
This brokenness is certainly the loss of function, of ability. I have trouble making sense. Whatever eloquence I attain here requires a lot of effort and leaves me both exhausted and in pain from the effort. Sometimes I just talk repeating myself in increasingly tighter circles. Suddenly seeing a clock I might realize that 15 minutes had passed. Seeing the worry on my listener’s face, I wonder if it had been all gibberish or “just” a semantic vortex.
This is from a general difficulty processing information, rather than extensive damage to my speech centers – although there is some of that. Whether the information comes from raw external stimuli, my own mental processes or a combination of the two doesn’t matter. My experiences of time, object permanence and memory are all impaired, altered, something different. So I have trouble both making sense and making sense of.
But this brokenness is also a breaking open, a kind of general breaking open of how things are, the beautiful assault I’ve referred to before. I would have never chosen it, but there it is.
