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

I’m hard-wired to be a writer? Whoa

hyperg-poster
Driven to write…

As it turns out, finding out you’re neurologically “hard-wired” to be a writer isn’t necessarily a good thing.

Hypergraphia, the urge to write excessively, is one of a cluster of characteristics forming Geschwind Syndrome, which is itself a personality-affecting phenomenon that often goes along with having TLE, or Temporal Lobe Epilepsy. Unlike better-known epilepsies affecting the motor-control areas of the brain, TLE influences the sensory-input processing part of the brain, also the part that controls language and memory access. (You may have heard how the “smell” part of the brain resides close to the “memory” part making smell one of the strongest senses that can evoke memory–well, TLE seizures can entail sensory hallucinations such as smell and complex deja-vu hallucinations.)

I had infant febrile seizures–they put me in a coma for about a day. But it wasn’t until about 15-20 years ago I began to learn about TLE and the fact that a scar on one or both of my temporal lobes had left its mark on my very personality for as long as I could remember. An obsession with language, the drive to write, a strong sense of social justice and the tendency to become mildly-obsessed with worlds of the imagination (cartoons, TV, movies, but most often books) could all be attributed to my neurological irregularities. I wrote stories and sometimes when I was too impatient to wait for inspiration I simply copied my favorite books from the library by hand. The thing with hypergraphia is, you want to write a lot; it isn’t necessarily good. Some people write loads of crap. Some who have little imagination just doodle their name all over everything.

But I tried to be a better writer. I began my first novel at age twelve, and by then was probably an even better artist than writer (abstract creativity sort of swirls out of Geschwind Syndrome and related conditions). I studied art in high school and AP English and French, then began a major in art and minor in music that resigned itself to a writing major and the music minor. This writing thing just wasn’t going away. I proved to be a pretty good abstract thinker and was sort of flattered into graduate school in Medieval/Renaissance literature. I adored Anglo-Saxon and the histories of Shakespeare–having already written quite a bit of political-themed stories myself.

By young adulthood, though, I began to be aware that my mini-obsessions, my intensely-curious and driven scholarship (and lack of interest in dating) and overly-developed “inner life” (I think Wikipedia calls it “intensified mental life”) was unusual, and there were some aspects of my routine I had to keep to myself. Color-coded notes and index cards, the tendency to live inside interesting stories and photographs, and always, always the story-writing. I figured it was just me. Er, that is, it is me. Only. . .IS IT?

This is the sinking-feeling reaction and subsequent specific despair that followed my diagnosis. It didn’t matter that I was in good company; many notable artists had TLE (Van Gogh, Dostoyevsky). So did many mystical saints and shamans–Joan of Arc. None of them were very happy in their personal lives, were they?! Destined to be misunderstood outsiders at best.

Far from being elated that I was quite literally hard-wired to be philosophical and detail-oriented and imaginative and a writer, I felt like my entire life of writing was. . .a symptom! It felt like everything that made me ME was simply a medical phenomenon. I walked around feeling like nothing more than a diagnosis. And though it wasn’t a conscious decision, I gradually. . .stopped writing. Whenever I looked at my latest novel I saw it the way a clinical scientist views experimental data: clear evidence of a mind gripped by disease. If I didn’t have a normal mind, how could my observations and opinions ever be valuable?!

And then what happened was, I became Not-A-Writer. For FIFTEEN YEARS. That was the extent of my despair. I had a degree in writing and a Master’s in literature; I had top grade-point averages and won every scholarship and assistantship and fellowship that had come my way. I wrote three doctoral degree comprehensive exams for twelve perfect scores and I had taught writing successfully at the college level for ten years–and still I somehow convinced myself it was all a fluke.

Of course the symptoms still found release during those years; I still told myself some pretty elaborate stories in my head. I had learned to compose and memorize scenes in my head verbatim since those days in high school when staying up late to get just one-last-thought written down became impractical, and I self-imposed a strict “lights-off” schedule. During the writing hiatus I had fantasies after lights-out as lengthy and complex and coherent as any novel I’d ever written–if not more-so because now I was conscious of the need for concise story-telling, since wordiness was a symptom of my “disease”. But I stubbornly refused to write any of it down. I silenced myself more effectively than childhood shyness or low self-esteem ever had.

Still, I read a lot, as many people do, and often I read novels that were okay but I said to myself, “This got published? I’m pretty sure I can do better than that.” Social media netted me some writer friends, then last November 2nd I learned about NaNoWriMo–the online challenge to write a novel in a month. Just draft it. And something about that challenge appealed to me and freed up my self-imposed writer’s block; no one had to see it, you just had to write it. For some reason the time was right and this was the thing that got my butt in the chair and really writing again. Finding the joy in writing again and not worrying about why. That is, I began to feel like a person again some time ago, I found my life, I continued to apply my talents researching and engaging my curiosity. But actually writing every day didn’t happen till last November.

So three months later I had a fairly coherent first draft of 144,000+ words and I guess the dam has burst, the die is cast, I’ve crossed the Rubicon et cetera. Laptops and the Internet writing community make for a very different world since last I was a writer. I don’t know where I’m going from here. But I don’t think I’m going to go quietly.


*Nothing in this post or the reading list should be construed as a basis for a medical diagnosis. If you suspect your symptoms go beyond those of your average neurotic head-in-the-clouds workaholic writer, go say “Hey” to the family doctor. She’s probably happy to see you ’cause it’s been awhile!

…Before my writing break-through, I have to say that I credit Oliver Sacks with finally making me feel human again. His writings about neurological-based disorders were the first I read that asserted his patients were human beings first and beyond any medical problems they may have. He has a belief in the transcendant wonder of life and the abilities of people, probably based in his faith. Alice Weaver Flaherty, furthermore, writes about hypergraphia as both a neurologist and a writer–and a patient.

Altogether this makes for a pretty fascinating beginner reading list:

Flaherty, Alice Weaver. 2005. The Midnight Disease: The Drive to Write, Writer’s Block, and the Creative Brain. Mariner Books.

Jameson, Kay Redfield. 1993. Touched With Fire (Manic-Depressive Illness and the Artistic Temperament). The Free Press/Simon & Schuster.

LaPlante, Eve. 1993. Seized (Temporal Lobe Epilepsy as a Medical, Historical, and Artistic Phenomenon). HarperCollins.

Ornstein, Robert. 1991. The Evolution of Consciousness (The Origins of the Way We Think). Touchstone/Simon & Schuster.

Sacks, Oliver. 1987. The Man Who Mistook His Wife for a Hat and Other Clinical Tales. Harper & Row.