Guest post: Losing My Words

Today’s guest post, which I can relate to far more than I’d like, is from Emilia. You can find her on Twitter, talking rubbish and revolution.

Losing My Words

Words are just about the most important thing in the world to me. I make my living with them, I breathe them in, all day and all night. Sometimes I am so engrossed in my own flow of words, I can’t even hear the people around me, it takes them two or three times to get my attention. But this post, I am sad to say, is hard for me to write.

I don’t mean emotionally–though it is that–I mean literally. For the past five years, I’ve had chronic migraines of various kinds. I have the regular ones, the skull-splitting oh DEAR G_D NO SOUND OR LIGHT FOR ME TODAY migraines, at least once a week. I also have hemiplegic migraines, migraines which mimic a stroke, which are truly terrifying, though these are mostly under control with medication. And lastly, more lately there’s the possibility that I have vestibular migraines which are affecting my balance (I’m still having tests on this, I don’t have a dx on that yet).

My neurologist does a pretty good job with all this, providing me with an array of preventatives, painkillers that keep me roughly functional. Chiro and massage help immensely.* My case, she says, is just one of those tricky ones where it’s more pain management than cure. Which is okay, as far as chronic illness goes. I know it could be much, much worse.

But. I’m vastly diminished from the time I first started having regular migraines. Besides the obvious pain and exhaustion, I walk around in a brain fog a lot of the time, which dulls my critical capacities, my ability to form sentences (let alone coherent arguments). And worst of all for me, I have a mild form of aphasia, meaning that when I reach for a word, I often pull out another word that my mind has mentally related to it as similar. Or I use odd tenses, rearranging sentences into odd shapes, like a Cubist writer. The meaning is clear but the expression is unorthodox.

As a wanky theorist person, this is occasionally fascinating in the way it recalls Ferdinand de Saussure’s argument that language is differential, that words have particular relationships of difference to one another. As a writer with a disability, however, it mostly just fucking sucks.

There are times where I have sent work to a journal, thinking it was fine, only to have the response suggest that I check my work first with a native English speaker. As a native English speaker, and once with a PhD in English to boot, I can’t tell you how mortifying that is.

Worse than even the blow to my pride, is the feeling that I am losing my sense of myself, the very fibre of my being. I feel a tremendous sense of loss, of the person I was. Sometimes I mourn for my lost quickness. Indeed, I’ve begun to feel dispossessed from language itself, the very medium we use to convey our relation to the world of objects and each other.

There’s a fear lingering at the back of my brain, what if this gets worse, what if I end up losing my ability altogether? It’s not an altogether unfounded fear – my neurologist tells me there is markedly increased risk of strokes for people with hemiplegic migraines.

But for now, however painful and slow the process is, I am still writing. Given time and patience, I can still write. I take longer, and I make many more mistakes, and the attention of a good editor/friend certainly helps, but I can still do it… and I will continue to write until I can write no more.

*I hear Arwyn is a Trained Professional in that area, you Portland people should request her services. [Ed. note: I was threatened with pain of pain if I removed this footnote. It was emphatically Not My Idea.]

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4 Responses to Guest post: Losing My Words

  1. OMG THIS!!!!!!!!!!! I have recently developed seizures. Like “waking up in the hospital because i had seizures not remembering days at a time seizures.” I am also a blogger and had gotten 2 degrees in writing heavy subjects in college (yay for antrhopology and religious studies!) The meds they put me on the control my seizures make me either very sleepy pretty much constantly OR make me forget words. ordinary words. like refrigerator. It is sososo helpful to know that i am not alone. i am not the only one who refuses to give up, refuses to quit writing even though its harder, and i FEEL stupider every time i try (where or where did my IQ go!?!?!)

    thank you. and you are not alone either.

  2. Beautiful post, Emilia. I don’t have chronic migraines, but do have moderate fibromyalgia (one of my symptoms is occasional migraines) and also have similar moments where I fear losing my ability to do anything altogether.

  3. Austin Avery

    You still write well. I hope you never lose it.

  4. Besides the obvious pain and exhaustion, I walk around in a brain fog a lot of the time, which dulls my critical capacities, my ability to form sentences (let alone coherent arguments).

    this sums up in one sentence the struggle i have been having with writing over the past several years as my conditions worsened, the very thing that i have not been able to articulate for myself. i too love writing… but the hard part isn’t finding the energy to do it, its finding the words and sentences and even paragraphs.

    i offer condolences and tea.

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