What I See/Saw I: Hallucinations (Essay 2 of #52essays2017)

I am blind, but that does not mean I live in darkness, and I’m not just talking metaphor here. These days the visionscape confronting me sparkles and undulates, with greater or lesser intensity, constantly, veiling the world beyond with simple and complex hallucinations.

pixelated closeup of Godin's eye with green filter

The brilliance of my visionscape is not less intense in a dark room than in a brilliant sunny outdoors, only there are maybe more facets to it: there is darkness around the edges that gets washed out in a white out of a brilliant day. The pixelated cosmos in which I dwell sometimes takes on a color scheme, as if the whole thing were lit by stage gels. Sometimes I wake up and find my day washed neon pink, other days are teal. Sometimes the palette divides into contrasting colors, red occupying much of the upper left quadrant and green the lower right, or other times it is orange and cobalt.

My recent forays into the wonderful world of aromatics has proved to be a way to take control of what had heretofore been quite out of my control. Apparently I’m not very original in my synesthetic reactions but it’s fun to open a bottle of lavender essential oil and see my world turn violet, or peppermint and watch it turn electric blue.

Beyond or behind all the shimmering and swirling, I get glimpses of the world some people might call the objective reality of sight. That objective reality reveals itself to me now as blobs of light covered over by a fabric of swirls and pulsations.

For me there is no dark. No black. Never.

There is brightness and then there is more brightness. The light of a lamp lingers on my destroyed retinas for minutes, so that even if I have seen the lamp on–verified its onness by rolling my eyeballs to place the lamp in one of the chinks of far peripheral vision that still remain to me, when I turn it off, a blast of light remains to trick me, and sometimes, I must use my hand to verify that the bulb is not still making heat. But even when the physical light remnants disappear completely, there is the overwhelming perception of a pulsating kaleidoscope of pixelated light, leaving the dark room anything but dark.

The tears in the fabric of disease that remain to me to allow actual, external light to enter my visionscape are sometimes a help and sometimes a distraction. Oftentimes I can see points of light in my far periphery, lightbulbs in the distance that can help guide me in the right direction, but I cannot see the furniture that stands directly in my path. As I mentioned in my previous essay, my poor eyesight has never had anything to do with blurry vision. Always it has been a lack of information.

Much of what I see, especially in my peripheral vision, is undulating hallucinations that resemble the wavy floaters of the normal eye (as I remember them). They skitter randomly as sickle-shaped phenomena that are unrelated to external reality, and do not change much from day to night, light to dark, open or closed eye. In their crowdedness, and in their geometric breathing, they remind me of staring at wallpaper on acid way back when. I haven’t done any psychedelics for many years, I promise, but my visions have gotten pretty trippy!

One time, maybe five or six years ago, I was laying on my bed in the daytime in a hungover state, and suddenly a lurid parade of eighteenth century ladies jittered across my visionscape with painted lips formed into ironic smiles. They looked in my direction as they passed–an endless train of cartoonishly garish ladies moving across my field of vision. I remember feeling a vague sense of uncertainty but no fear. The vision lasted a minute or two at most, presenting (I understand now) my bored visual cortex with some much-needed stimulation. I had more vision then than now, but that was around the time that I think of myself as moving from being visually impaired to blind, so that although I could still see the bright window quite clearly behind the hallucination, and maybe a bit of the mirrored vanity beyond, I did not spend a great deal of my life looking at stuff.

I did not name this a hallucination or recognize it as such until my buddy Benjamin asked me if I hallucinated–that he’d heard on NPR about a condition that affects people that lose their vision late in life. That’s when I remembered the ladies in my bedroom and named it a hallucination. Since then I’ve had many more such experiences and have read Hallucinations by Oliver Sacks. “Silent Multitudes” is the first chapter of that book and is dedicated to the phenomenon.

Sacks begins the chapter by describing Rosalie, a woman blind for many years, who suddenly starts experiencing hallucinations and fears for her sanity. To his question “what do you see?” she answers:

“‘People in Eastern dress!”…In drapes, walking up and down stairs … a man who turns towards me and smiles, but he has huge teeth on one side of his mouth. Animals, too. I see this scene with a white building, and it is snowing–a soft snow, it is swirling. I see this horse (not a pretty horse, a drudgery horse) with a harness, dragging snow away … but it keeps switching…. I see a lot of children; they’re walking up and down stairs. They wear bright colors–rose, blue–like Eastern dress.'”

Sacks assures her that she is not losing her mind, but that she is experiencing Charles Bonnet Syndrome, named for a Swiss naturalist, who first described his father’s late-life visions and then experienced them himself when his own vision failed.

Sacks distinguishes between simple and complex hallucinations, which I have come to understand in my own experience. Under normal waking conditions, the simple hallucinations of undulating and pixelated designs breathe and skitter around with such constancy that I do not think about them unless I’m trying to put something into my periphery where I still can perceive some light and movement–when they seem to be in the way of my perception.

My complex hallucinations (as Sacks calls those that have recognizable content, such as people or animals–nameable objects and exhibit the crowding suggested by the chapter title “silent multitudes”) usually come on in the early morning hours after a night of insomnia. They appear without any mental prompting and seem to have nothing to do with my psychological state, if the wakeful tiredness be excepted. When they pop up, it is as if a switch turns on and the whole of my visionscape shifts for a few moments into an outrageous circus of jerky, cartoonish acrobats, jugglers, horses, and countless other abstract big top-inspired shapes and unnamable creatures that tumble with great rapidity into the center of my vision and back out again, as if they are in a tangled loop that keeps repeating with subtle and complex differences. The quality is of a cartoon or of an old-school video game.

One creature that makes an occasional appearance in both the insomnia-inspired complex hallucinations and in my everyday jumble of simple hallucinations is a red Space Invaders critter that marches from my far left periphery towards my nose.

This is so frustrating to write about because it seems weirder and more bombastic than it feels. It’s easier to simply say, “I can’t see.” But onward.

Like the everyday hallucinations, the early morning complex hallucinations are also not affected by my eyes being open or closed, though, if the sky is lightening, a sliver might show behind without changing any of it), and I can look around the scene to examine the vibrating tableau, as you might scan a computer screen if it were placed too close to your face.

As Sacks writes:

“I observed with Rosalie (as with many other patients) that while she was hallucinating, her eyes were open, and even though she could see nothing, her eyes moved here and there, as if looking at an actual scene. It was that which had first caught the nurses’ attention. Such looking or scanning does not occur with imagined scenes; most people, when visualizing or concentrating on their internal imagery, tend to close their eyes or else to have an abstracted gaze, looking at nothing in particular. … one does not hope to discover anything surprising or novel in one’s own imagery, whereas hallucinations may be full of surprises. They are often much more detailed than imagery, and ask to be inspected and studied.”

I find this distinction between mental imagery and hallucinations very helpful, as I have struggled to describe the difference to friends. I also have very intense mental imagery, often arising from internal reflection or prompted by outside stimuli–a novel or movie soundtrack can stimulate this imagery, but this does not present at all like the hallucinations. And yet both keep me tethered to the visible world, to my visual self.

I’m so stuck being a visual person that it is difficult for me to write anything very interesting without seeing it with my inner eye. Yet my inner eye has been so disconnected from actual sight for so long, it may be that I and others ought not to trust it. This is the struggle I find in my writing, which is why I write this now: I doubt my ability to tell you what I see. Have I had any success?

 

*This is essay 2 of #52essays2017, written with all four senses and remembered sight. Check out essay 1 “In the Beginning Were the Eye Doctors” here*

A Blind Person’s Notes on Notes On Blindness and Touching the Rock

Notes on Blindness movie poster featuring John Hull with visual memories superimposed on his head
Upon entering the Film forum, where Notes on Blindness, an innovative documentary centered around the voice of John Hull recorded in the early years of his complete vision loss, is playing, I was offered a headset, but told that I should only wear it over one ear. It turned out that I could not mix the audio description track with the soundtrack. The only solution was to put the audio description on low in one ear and hook the other plush earphone–like the kind one uses for recording–around my head to rest behind the other ear. The contraption was a little tight and began to squish my brains after not too long, and I should say that I don’t have a very big head, at least not literally.

Though the system was not ideal, the audio description turned out to be quite pleasant. And yet I found sitting in my own little audio bubble to be a bit strange. Usually my head would’ve been resting on my boyfriend’s shoulder to facilitate his whispered descriptions. The sensation of separation was both cool and lonely, our only connection the shared bag of popcorn. As Notes on Blindness suggests, blindness is a paradoxical gift–not one Hull (or I) would have asked for, but still with unique compensations, one being the closeness that comes with occasional dependence, a closeness that can sometimes be awkward and other times charming.

 

I was excited to experience Notes on Blindness because I remembered reading Touching the Rock (John Hull’s recordings in book form) when I was new to New York and grad school. At that time, some of his observations resonated, such as the social difficulties of negotiating parties and bars, as well as the interesting, and not always unfortunate, adaptations one makes when one is forced to read books with one’s ears instead of eyes, such as the development of a good auditory memory and acute attention to the spoken word. But at that time in my progressive cone-rod dystrophy, I steadfastly existed as a visually impaired–not a blind person–and could not relate to the vast majority of Hull’s observations.

Twenty years later, I find that Hull’s words resonate more fully, but that his experience still differs from my own in some fundamental ways. For example, now I understand his sometimes strong desire “to hide my face from others” and wonder with him, “Is this a primitive desire to find some kind of equality? Since your face is not available to me, why should my face be available to you?” But I do not feel Hull’s “horror of being faceless, of forgetting one’s own appearance, of having no face.” I’m very aware, self-conscious even, of my face being present and vulnerable to the gaze of others. In this way, I believe my experience of blindness is colored by my experience as a woman, with all its attendant expectations of beauty.

Of course, Hull is but one individual who lived one path that included blindness. He was also a father, a husband, an educator, a deeply religious man born in a particular time and place, whose unique and philosophical observations ought to chip away at, rather than fortify, the monolith called blindness.

Hull alludes to the impossibility of speaking for all blind people in his preface “To the Blind Reader”: “Blind people differ from each other as much as sighted people do. I do not claim to speak for you, but only for myself. You do not need to know what blindness is like, because you are blind.” As a matter of fact, I am intensely curious to learn about his experience of blindness because it is, in many ways, very different from my own. I do not accept his assertion that I “know what blindness is” for anyone but myself.

In “The ‘Dark, Paradoxical Gift’” (first published in 1991 in The New York Review of Books and republished as a forward to subsequent editions of Touching the rock), Oliver Sacks writes, “There has never been, to my knowledge, so minute and fascinating (and frightening) an account of how not only the outer eye, but the “inner eye,” gradually vanishes with blindness; of the steady loss of visual memory, visual imagery, visual orientation, visual concepts,… into the state which he calls ‘deep blindness.'”

Sacks did not at first question hull’s assertion of “deep blindness”–where physical sight loss leads inevitably to a shutting of the inner eye. But almost twenty years later, in The Mind’s Eye he admits his mistake:

“I assumed that Hull’s experience was typical of acquired blindness, the response, sooner or later, of everyone who loses sight–and a brilliant example of cortical plasticity.

“Yet when I came to publish an essay on Hull’s book in 1991, I was taken aback to receive a number of letters from blind people, letters that were often somewhat puzzled and occasionally indignant in tone. Many of these people wrote that they could not identify with Hull’s experience and said that they themselves, even decades after losing their sight, had never lost their visual images or memories. One woman, who had lost her sight at fifteen, wrote:

“‘Even though I am totally blind … I consider myself a very visual person. I still “see” objects in front of me. As I am typing now I can see my hands on the keyboard…. I don’t feel comfortable in a new environment until I have a mental picture of its appearance….'”

Those words could have been written by me, so close are they to expressing my reliance upon and constant sense of the visible. Unlike Hull who loses his visual memories and the ability to create new ones, I, like the woman above, use the inner eye to map and remember my world as I encounter it. For example, although I cannot in any sense have been said to experience a recent dinner party–From the outfit I was wearing to the position of others at the table to the food on the plate in front of me–through my physical eyes, when I call it to mind, it appears as a vivid tableau, punctuated by conversation and smells, but occupying mental space just as those memories from before vision loss.

In the Mind’s Eye Sacks presents Hull’s concept of deep blindness in dialogue with alternate neurological responses to total vision loss .Sacks writes, “Had I been wrong, or at least one-sided, in accepting Hull’s experience as a typical response to blindness? Had I been guilty of emphasizing one mode of response too strongly, oblivious to other, radically different possibilities?”

Sacks goes on to relate the story of Zoltan Torey and others blinded, but retaining a strong sense of the lasting vitality of the inner eye. The experience of blindness reveals itself to be as complex as the experience of sight. Even though Hull’s experience of deep blindness is not my own, his philosophical and sociological grappling is fascinating and intellectually stimulating, as well as entertaining.

In Notes on Blindness, I found Hull’s considerable insights smothered by the family recreations and straining narrative–a narrative that is precisely flouted in Touching the Rock. Notes on Blindness seems not to be fueled by Hull’s wanting “to understand blindness” but rather by the more quotidian formula of overcoming blindness, his original conception of deep blindness barely alluded to. The movie attempts to shape the meandering thoughts of a very smart and philosophically-minded blind man into a domesticated docudrama, where Hull’s recorded meanderings project a bleak arc.

But, like most blind people I know, Hull has a lively sense of humor regarding himself and the sighted people he must deal with, which sparkle throughout Touching the rock that would have added much fun and insight to the film. For instance in a 1984 entry entitled “Does he take sugar?” Hull describes behaviors painfully familiar to me:

“This situation often seems to arise when I am getting in a car with a group of other people. ‘Will you put John in the back with you?’ ‘No, I’ll put him in the front with you.’ ‘All right, you put him in then.’ At this point, I interjected, crying out with an exceedingly loud voice, ‘John is not put anywhere, thank you very much. John is asked if he has any preferences about where he sits.’ At this, all my friends laughed uproariously and were covered with apologies and confusions. On a similar occasion recently, I shouted out, ‘Hey, you guys, don’t you talk about me as if I’m not here.’ This, again, brought shouts of laughter and a mixture of apologies, agreements and congratulations.

“It is, of course, very embarrassing for intelligent and sensitive people when they are caught out like this, in using the ‘Does he take sugar?’ approach to a disabled person. These people are all sensitive, and well aware of the humiliation which this approach implies. So the question arises, why do they do it?

“It is so easy to marginalize a blind person; indeed, in certain situations it is almost impossible not to.”

There is great pathos in the film, but I found the highly stylized and self-conscious metaphorics a bit much, though that could in part be a problem of translation–how many times can a person hear “fade to black” without feeling bored? The raining indoors (and without the family taking notice of it) also seemed needlessly artsy and contrived–not nearly as beautiful as Hull’s intricate description of the sound picture made by rain earlier in the film.

On the other hand, the filmmakers neglect what, to my mind, is one of the most outrageously visual scenes in Touching the rock. Perhaps they felt that a blind man stretched upon an enormous stone altar at the front of an abbey that he had learned by feel, incrementally, and alone in the dead of night, would be too weird or offensive. But it is precisely this image that expresses the whole body seeing that seems ultimately to offer Hull compensation:

“Every night I returned, to explore a little bit more. From pillar to pillar I would work my way, counting the steps, remembering the angles, always returning to the foot of the stairway.

“After several nights, I discovered the main altar. I had been told about this, and I easily recognized it from the description. It was a single block of marble. Finding one corner, I ran my fingers along the edge, only to find that I could not reach the other end. I worked my way along the front and was amazed at its size. The front was carved with hard, cold letters. They stood out boldly, but I could not be bothered reading them. The top was as smooth as silk, but how far back did it go? I stretched my arms out over it but could not reach the back. This was incredible. It must have a back somewhere. Pushing myself up on to it, my feet hanging out over the front, I could reach the back. I did this again and again, measuring it with my body, till at last I began to have some idea of its proportions. It was bigger than me and much older. There were several places on the polished surface which were marked with long, rather irregular indentations, not cracks, but imperfections of some kind. Could it have been dropped? These marks felt like the result of impact. The contrast between the rough depressions and the huge polished areas was extraordinary. Here was the work of people, grinding this thing, smoothing it to an almost greasy, slightly dusty finish which went slippery when I licked it. Here were these abrasions, something more primitive, the naked heart of the rock.”

I fear I may be criticized for having anything negative to say about a film that I should appreciate, perhaps, simply because it attempts to illuminate, in these dark times, a unique perspective, and even includes me, a blind movie-goer into the experience by offering audio description. I think it would be a fair criticism; I would not even feel comfortable writing about–even offering, in my meandering way, a review–on something that was not ostensibly accessible to my appreciation of it. So the opportunity is not to be squandered.

I used to love movies and have in my mind’s eye scenes, decadent visual images (several from The Cook, The Thief, His Wife, And Her Lover, for example!), to remind me that filmmaking tends to be extremely visual, though many blind people I know get quite a bit from listening to movies. In other words, I am delighted to write about Notes on Blindness and thrilled to have had an afternoon at the movies to enjoy something that was made, at least in part, with someone like me in mind. I hope there will be more.