The Aphasic Horror – or, the Flip Side of Hypergraphia

When, literally, there are no words, there is no self.

Last time, I wrote about the phenomenon of hypergraphia as part of a collection of possible attributes that comprise Geschwind Syndrome, itself sometimes a feature of temporal lobe epilepsy. Having an over-abundance of words can be a wonderful “symptom” for a writer to have. But in my case TLE has on occasion led to a frightening, albeit brief, type of seizure producing aphasia: the complete loss of words. There are TLE seizures that are enjoyable when I’m given the leisure to entertain them: euphoria, dreamlike, dreaming-while-wide-awake, all-encompassing deja-vu states that hyper-stimulate both memory and creativity. But of all the unpleasant seizures that go along with TLE, none that I experience are anywhere near as horrible and frightening as the aphasia one.

I must be forgiven for complaining, because my seizures are relatively mild (and after Cymbalta was invented for my fibromyalgia I began to get quality sleep and the seizures have all but disappeared) and, being temporal lobe seizures, are usually undetectable to the outside world. But appearances most absolutely and certainly can be deceiving.
I know that the dreaded sensation I’m about to describe lasts probably only a second or even less, but believe me, it feels like an eternity while I’m “in” it.

It begins with a metaphorical “aphasia cattle prod” that hits me right between the eyes and it’s almost as if I’m being physically struck backwards; in the same moment my mind is wiped utterly blank. You can’t even imagine how blank. I suddenly have NO WORDS–none, nothing to think with. And the sensations are overwhelming: I feel as if I’m falling in total blackness, my hands clutching the air and finding nothing to hang onto, and with that/because of that I’m feeling utter terror, just about the worst terror I’ve ever known. (You can’t see me right now, but as I try to put myself back into that place, my hands are actually clawing at the air.)

During this eternity-moment I feel like I’m not even alive anymore; it feels as though I’ve been instantaneously relegated to a strange nether-world or limbo where life and death are the measure of nothing. I have no words so I can’t think! I may as well be a non-sentient slug in a petri dish. You can poke me and I might have an autonomic reaction, but I won’t be able to think about my past or my future or why I’m being poked. I can’t even think about thinking. I can’t think about myself as being apart from the petrie dish or the poke or the pok-er or the pain. There is no form or structure for my consciousness; I’m not human when I have no words.

Of course my entire description of the experience is only possible in after-thought, and certainly what the experience is not occurs to me only as part of a sensation during the actual seizure. Falling and flailing in blackness and in terror is as much as I know at the time. It’s more than enough.

Afterwards I have a residual pressure (absence of pressure?) fogging me up right between and behind the eyes, a bit of fatigue after the aura, but a profound sense of relief to be standing on firm ground again. Sensory input flows through my mind again and the little talker in my head assigns what I experience words and descriptions and I exist once more.

The capacity for aphasia even for a moment scares the daylights out of me, and I can only begin to imagine the horror for people whose neurological impairments are more long-term. Oliver Sacks, the neurologist and writer, has described in multiple books some of the more strange and painful variations brain-damage can exhibit. There are more familiar conditions like Alzheimer’s, Parkinson’s, and the catatonic conditions seen in the film Awakenings, based on Dr. Sacks’ work. These are conditions which, like Geschwind Syndrome, can challenge one’s very definition of personhood and sense of self. I appreciate every day not being on that end of the spectrum.

So hard-wired wordiness aside, I honestly don’t take for granted that my reliance on words, my love of words, my very self-perception and definition through words is a given. Rather I know that it is a gift, this indicator of sentience and human-ness. I see words for the magic they are and I’ve understood for as long as I’ve used them the drive to tell stories with them, to make something that wasn’t there before I took pen to paper.

Aphasia

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5 thoughts on “The Aphasic Horror – or, the Flip Side of Hypergraphia

  1. I suppose, for people who don’t have TLE, having a condition that makes your head explode with too many words might seem like an attractive thing. It could appear as if TLE makes it ‘easy’ to be a writer. But we can’t dismiss the flip side of that, which really sounds terrifying from the way you describe it.
    I am glad that what you take away from this experience is a stronger appreciation for words and for what we can create with them. It reminds me of my own experience with depression and of how it made me appreciate the ability to feel in a way that I had not considered before.

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  3. When I first had my stroke, in 2007, I had near-full aphasia/agnosia for about a month. Symbols on a page did not resolve to letters or numbers, and I could not speak or understand much speech (oddly, I knew how to read lips, and I could sometimes get content, but not directly lexical, from reading lips). I had to pick up, say, a salt shaker from a table and stare at it with great concentration, handle it, turn it about, and finally it would resolve as to the object’s purpose.

    That this can happen and you have no idea if it’s going to be permanent or temporary is terrifying. But for me today, it makes everything easier to bear, regardless of what happens. I just recall that timeless “gray room” as I think of it, of those days after the injury, and anything that happens now seems easy.

    Yeah, I’m an optimist in an inside out sort of way. But then again, it hasn’t happened again to me. Yet.

    So yes, I so empathize, there are no anchors, no reference points, and really, no descriptors even if we try.

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  4. You have definitely lived that “horror” I can only imagine some people live in–I would certainly be an optismist if I’d lived through that and was able to return to the land of words. I think I would be praying thanks morning and evening–as probably I should be now, because I’ve had only the merest taste of the kinds of suffering in those long-term/lifelong patients of the kinds of conditions Dr. Sacks has treated. Enough for a tiny bit of empathy which I hope to hang onto. I know that even in utter solitude I at least have words to build things with in my mind–that is so very precious a gift. Not for a writer, but for any human being: the ability to speak to one’s self, and to build on that dialectic.

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