My experience of the world used to be so very direct. I was certainly curious about the mechanisms of perception, intellectually aware that my sensory experiences of the material reality of the world “out there” were mediated. I could find my fovea, for example—the “blind spot” in vision where the optic nerve interrupts the retina—and enjoy catching my neurological system and consciousness conspiring to give me an uninterrupted view of the world. But in general, I felt as I supposed most people do—there was light and I saw, sounds vibrated around me and I heard, but mostly I simply perceived in an immediate, unexamined manner: “I see a finch, I hear it warble.”
That’s all changed now.
The rupturing of the illusion of continuity between objective reality and subjective experience is dramatic when I seize. Most obviously, my vision is disrupted, decomposes, and I spend some time blind. I also become eerily unmoored from my sense of embodiment, as I lose proprioception, the internal representation that tells me where my limbs are, where my body is in space. You can tease out the difference between physical sensation of the body from the proprioceptive sense of where it lies by thinking of a time when your foot fell deeply asleep and you had, disconcertingly, to walk on it. Despite the buzzing absence of sensation, you still knew how to walk along, because you could tell when your foot ought to make contact with the ground, even though the sensation of sole touching pavement was absent. Well: reverse that. I become agnostic as to the position of my limbs, especially my legs, in space, though I receive sensation through them. It is . . . disconcerting.
What is really fascinating about my sensory loss in seizure is that it has become clear that what is missing is consciousness rather than sensory data and interpretation. I have found that even when my vision is shattered into fragments and ominous pulsing zones of absence, I can continue to cling to contact with others in instant messaging text. I must see and read the words spinning themselves out on my computer screen, though I have no conscious ability to apprehend them. I just feel the conversation unwinding.
I remember a case Oliver Sacks reported on, about a woman with neurological damage who could not perceive anything on the left side. I found it in The Man Who Mistook His Wife for a Hat, and I quote for you: “Sometimes she will put on lipstick, and make up the right half of her face, leaving the left half completely neglected: it is almost impossible to treat these things, because her attention cannot be drawn to them. . . She knows it intellectually, and can understand, and laugh; but it is impossible for her to know it directly.” I’ve read of studies of people with visual agnosias who report seeing nothing in the affected part of their visual field—but who, if words are flashed there by a researcher, are later able to recognize the ones they saw: they select them out of pairs of words, feeling they do so randomly, with no conscious memory of ever seeing any of the words, and yet choosing the words that were projected by the experimenter.
This gets at what I mean when I say I am losing the concrete. Subjectively, I seize and I go blind. But clearly something else is going on.
My grip on the perceptive world has slipped, well beyond the bounds of seizurespace. Visually, my everyday view is prone to fragmenting, flickering, seeming for a microsecond to rush at me, or away. The world seems to curve under my feet, as if some sort of sensory fisheye lens filters perception. I often tell myself, “Don’t look down.” On the level of metaphor, I mean not to allow myself to be drawn into contemplating the depths that yawn open, threatening to swallow me into some personal sensory deprivation purgatory. But I also mean it quite literally. If I look down, if I focus on trying to navigate by sight or conscious knowledge of the placement of my limbs, I walk into walls and tumble down stairs. I need to keep my consciousness out of the loop, and act on a deeper level—let my buddhamind, my embodied knowledge, my subconsciousness work for me. A friend pointed out to me that wu wei, or effortless action, is a hallmark of enlightenment in Taoist practice. That at least is an encouraging thought: that between episodes of knocking into things and flashes of fear when my consciousness intrudes, I’m being given a route toward a certain grace.
I try to maintain that sense of acceptance, and just keep moving forward. But there are times when it is hard. Sometimes I become very aware of deficits, and it’s quite challenging to my sense of self as a competent person. Recently I’ve been thinking about my musical sense, and experiencing a . . . let’s say, musical aporia. My internal data present a perplexing paradox. On the one hand, there is the evidence provided by my conscious inner musical ear. I know that I used to be able to hear music in a very concrete manner, just like queuing up an audio file in my head. I could play it in real time, or stop and focus on particular elements: hear a chord, ponder a particular timbre. I cannot do this any longer. I mourn this, and am quite frustrated with the deficit. I can call music to mind, but what appears is. .. very aurally vague. Shadows of sound winnow away if I try to grasp them firmly.
But other evidence has come to light to complicate the picture. Now: I used to be able to hear chords—I’m certain I could hear four notes sounded together, if I consciously called on them to resound in my head. I can’t do this at all any more. To hear a note mentally, I have to evoke it first physically, by subvocalizing. I can only subvocalize one note, so chords are gone. I can hear a two-note interval, if I alternate subvocalizing the two notes—though it’s still frustratingly tenuous and insubstantial as an internal perception. I believed I had lost the internal capacity to render pitch. But then a couple of days ago I realized, quite by accident, that if I looked at the title of a random song on my iPod and started singing it to myself before playing the track, I was almost always right on pitch. It can’t be absolute pitch, since I’ve no idea what key any of the songs were in, and have never been able to hum an A or any note on command. It has to be relative—based on a totally unconscious knowledge of the relationship between the pitches in the random tunes, and stored in my embodied memory. I had no sense of confidence whatsoever as I started to hum a given song that I was on pitch—and yet I almost always found I was, when I played the track in question.
I can’t hear much with my mind’s ear anymore. But apparently the music is still in my bones. And I’m trying to be OK with that.
To lose conscious senses of perception is frightening. In Western ideology, to lose consciousness is to be overcome, to lose control, to lose the ultimate anchor: the self. And often I experience it so. I fear what would happen if I were to lose my senses, most literally. To wander blind and deaf and alienated even from the sense of residing in my own flesh. . . But I am trying to re-envision the loss of perception, reimagine the loss of conscious mental content as a sort of blessing. If I shift my evaluative lens eastward, relinquishing conscious perception is not a dangerous loss of control, because control is itself an illusion. In walking with proprioceptively-lost limbs I am not walking dangerous minefields but the sweet fields of attunement with the universe around me, where my body moves without my conscious direction. I cannot direct myself to hear, but my soul perceives exactly the right note, without my willing it. At times I may be blind, and yet in the midst of blindness I see, I see that which I cannot perceive, which you can view as some sort of neurological freakery—or you can view as a miracle, really.
Perhaps I’ve been given a gift, forced to take a path that many find hard to walk, being tied to conscious machinations. I quote from that classic of spiritual writings, The Tao of Pooh:
"How do you do Nothing?" asked Pooh, after he had wondered for a long time.
"Well, it's what people call out at you just as you're going off to do it, What are you going to do, Christopher Robin, and you say, Oh, Nothing, and then you go and do it."
"Oh, I see," said Pooh.
"This is a nothing sort of thing that we're doing now."
"Oh, I see," said Pooh again.
"It means just going along, listening to all the things you can't hear, and not bothering.”
I am going along, not looking down, as much as I can curb that impulse. I am listening to the things I cannot hear, and have affirmation that they ring true. And I am doing my best to let go, not to bother, not to be bothered, simply to be.
3 comments:
A brave and frightening pair of posts, Riv. Thank you for publishing them.
I am fascinated by your being able to understand and reply to words that you cannot consciously see, because I have spoken with you during these episodes and never guessed that anything unusual was happening. The levels and layers of consciousness and awareness in mind and brain are quite amazing.
Thank you, Udge, for experiencing fascination. . . As for fear, I'm doing my level best to let it go. It's difficult because it seems to be a part of the seizure experience itself, which is alive with darkly glittering absences where senses would otherwise be, and waves of emotion that pass through them--foreboding, an ominous immanence, fear of pain, sparks of anxiety. To see these as extrinsic experiences is a challenge I attempt to meet--with partial success, as I found today in seizurespace. I'm getting better at it, slowly. I've come to see equanimity in the face of the fragility of mind and body as a measure of enlightenment, and I aim at it as best I can.
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