In the Beginning Were the Eye Doctors, essay 1 of #52essays2017

Before the base closed to make way for the National Park, Lucasfilm, and the Thoreau Center, my mother and I drove regularly through the Presidio to buy cheap groceries at the commissary or to the Letterman Army Medical Center for visits to the pediatricians and then many eye doctors. My dad was in the military, and as a dependent, I received benefits that extended beyond my parents’ divorce.

Letterman Army Medical Center photographed from above with the Golden Gate Bridge in the background. (Wikipedia)

I loved the drive that took us through the Arguello Gate, punching our car into an enchanted forest of Monterey pine, Monterey cypress, and the Tasmanian bluegum, a eucalyptus all the way from Australia. I did not know their names then, or that these seemingly primordial trees had been planted but a hundred years earlier. Inspired by the success of Golden Gate Park and Planted by the U.S. Army, these trees were meant to beautify the windswept brush lands that were an eyesore to the San Francisco Bay newcomers. It was no accident that the sudden woodlands reminded me of the enchanted New England greenery I looked longingly at in my mother’s pictorial atlas of America. The easterners who came to take over the Presidio after the Mexicans did not appreciate the sandy bluffs blowing into their windows or the scrubby barrenness sweeping down to the bay. So they made that landscape familiar by planting thousands of trees. And in those trees they nestled their Georgian Revival buildings for my mother to point to, with all the authority of having, for a few years, been the wife of an officer, “That’s the house of a general.” Or “those are bachelor quarters,” and I was duly impressed. One of those exotic brick buildings is now a boutique inn for tourists looking to enjoy amenities and hiking trails.

but this was the early ’80’s, at least ten years before the base was decommissioned, and long before I had need to know that the landscape was man-made. To my keen young eyes, it looked ancient, as if it were what San Francisco looked like under or behind all the people and buildings–prehistoric, darkly enchanting and full of dappled light. I could not know it was all fakery beyond those gates, all artifice and make believe.

 

In fourth grade, I suddenly couldn’t see the writing on the blackboard from the back of the class. I told my mother and she made an appointment at the optometrist. I was excited. Getting glasses seemed to me to be very grown up. We drove to one of the bungalows that lay in covered strips with wooden steps leading up to planked covered walkways, almost like an Old West town. The building was dark and creaky. I sat in the big chair and looked through the tiny eyeholes in the cartoonishly huge lens machine. I could not read the small print on the chart. Still, no matter how many times the lenses shifted and the doctor asked, “tell me if this one is better,” (click) “or this?” (click) “this one, or this one,” the line did not reveal itself to me. I was a child who wanted to please, so I tried very hard to see a difference. “Maybe, a little better.” I’d say, but there seemed to be no difference in any of the shifting lenses–no better anyway, only worse. Many of the lenses made my vision blurry. I did not know how to explain then that my vision had not been blurry before. I have never lived in a blurry world. My eye problems have nothing to do with focus. It was always a question of a lack of information, of a pixilated visionscape, of television fuzz, but I hadn’t the words then, or even much of all that was to come.

The optometrist prescribed some glasses, though he sheepishly explained that he could not get my vision down to 20/20. They did nothing to help me see the writing on the blackboard.

We went to another optometrist and then maybe an ophthalmologist. Again, there was the same clicking of lenses with its odd attendant sensations of shifting air currents so close to the eyeball, with no luck. “Maybe a little better.” Or “worse,” was all there was for me to say. After a long time, the eye doctor called my mother in and told us that he could not correct my vision.

Perhaps it was that doctor, or perhaps the next, possibly to allay my mother’s fears or perhaps to mitigate his own impotence, said, “Her eyes are growing too fast for her body.” Or maybe he said that my body was growing too fast for my eyes. That satisfied us for a little while.

Finally, we were referred from the bungalows to the main hospital–the building that has since been demolished to make room for the Letterman Digital Arts Center–to see the head of ophthalmology. This was when my mother began to worry that something queer and a little scary might be going on. Though My vision loss was not very impressive, maybe 20/40 in the worst eye, the head of ophthalmology could not offer a solution either. He sent me out of the room to talk to my mother, to berate her for bringing me to him.

In response to my mother’s worried summery–eye doctors offering wacky opinions and no answers–this brilliant man spoke lamely and with spite, “Maybe she can’t see because you’ve been taking her to so many eye doctors.”

This summit of ludicrous subterfuge, this apotheosis of smug defiance in the face of ignorance has oft been repeated by my mother and myself (who was loitering just outside the door, listening) as the climax in our sad little detective story: What was killing my sight?

My mother, never good at checking her emotions, allowed her voice to rise with tears and said, “then why can’t she read the writing on the blackboard?” She would not accept another answerless dismissal. To his credit, he did not dig in, but relented, perhaps embarrassed deeply, though on the surface the coolness remained. He called me back into the room and took another look into my eyes, with his headlamp and magnifying monocle, and saw…something. I can only imagine that it was a blip on the landscape of my retinas, a suggestion of that dystrophy that would grow into eventual blindness, or it may be that he saw nothing, but suspected something, something remembered from medical school or read about in an ophthalmology journal. Perhaps it was a eureka moment that sparked the intelligence of this head of ophthalmology–an intelligence that had been momentarily dimmed by ignorance. Maybe it was then that he remembered a degenerative eye disease called retinitis pigmentosa (RP), or maybe it was later, but, in any case, the diagnosis would be forthcoming, and one which I would use for decades.

As it turned out, my eye disease did not present like RP–I lost my central vision first whereas most people with retinitis pigmentosa lose peripheral vision first, so that as it progresses, they experience an ever more restricted tunnel vision. My disease progressed from the center outward, albeit jaggedly, leaving pockets of living cells.

Thirty some odd years later, I’ve learn that my cone-rod dystrophy is caused by a gene mutation that remains unidentified. In a world of rare eye diseases, I have a really rare one. As I write, my blood is going its second round of genetic testing, and it may be that I have a mutation all my own.

Back then, a diagnosis of retinitis pigmentosa was at least a name, a thing I could tell people, and it was rare enough and unique. I was strangely proud, so that when at the end of that first year, I was sent across the road to the Letterman Army Institute of Research (LAIR) for observation and experiment, I was excited. For three days they ran me through a battery of tests–from organizing little disks of gradient colors to a primitive electroretinography (ERG), putting me into a dark room to measure the electronic firings of the photoreceptor cells in my retina. The ERG is standard procedure at retinal specialists now, but they were just figuring it out back then.

In my most recent visit to the ophthalmologist, after dilation and numbing drops a technician laid thin wires along each of my bottom eyelids and taped the ends to my cheeks and forehead to keep them in place. The thin wires were then connected to thicker ones that in turn made their way into a computer. But that first ERG, a lab rat was I, laying in the dark for many hours with my eyelids held open by grotesque contact lenses from which the wires sprung. That had been perhaps the scariest, but also the most important test I underwent at LAIR, one that likely contributed to the current state of the art technology that even suggests the possibility of a near-future cure.

I subsequently did a presentation on the experience. By that time, I’d moved from fourth grade to fifth grade, and in my private girl school, that meant a change in uniform, from green plaid bib dresses to sailor-style middies and pleated navy skirts.

My presentation on retinitis pigmentosa and my battery of testing at LAIR, with its photographs and little moments of humor, like when I described looking into a contraption to click a button when I saw (and did not see) a tiny red light move into and out of my visual field, as resembling nothing so much as staring for hours into an illuminated toilet bowl, got a laugh from my classmates. I also got some pointed questions from my teacher. Perhaps she, along with my other teachers, was concerned, but they did not let on. It was a small school and I was a scholarship child in a sea of very rich girls, so there was perhaps a lot of feeling sorry for me going on. Or perhaps not. Maybe it is just my grown up self who feels sorry for that little girl who tried so hard to make light of something scary and totally out of her control. Out of even the control of her mother and teacher’s and eye doctors too.

Image of Godin's retina in 1983

The progress of my eye disease has been the degeneration of my sight–progress and degeneration have thus been strangely confused in my mind since I was a kid. And today, it is not clear to me whether this long eye progression of sight to blindness, the slowest of calamities, akin to aging in its relentless and somewhat boring degeneration, has diminished or enhanced my life experiences. But human existence being what it is–complicated and fleeting–I imagine the answer must be both.

 

*This is the first of #52essays2017 written with all four senses and remembered sight. Read more about the project and the woman behind it HERE*

Winter Wonder Maze: My first week without a home of my own and blind

I wish I could claim “winter wonder maze” as my own term for Alabaster‘s mother’s incredible Xmas installation–involving 42 trees, countless elves, Santas, snow babies (little snow men), thousands of feet of garlands, lights, a train set, and whole mountain ranges of glistening cotton snow, but I can’t. It was he, with whom I set out vagabonding, that comforted me with the coinage.

Winter village with train set in front of TV playing scary movie with closed caption, "We're gonna come find you. I promise."

I had been struggling with my inability to navigate the path to the kitchen which cuts through the living room–the nexus of Xmas décor–not only because there are so many obstacles but also because in order to do so one must pass between the watchers of the giant TV and the TV itself. Moving slowly and uncertainly as I do, prolongs my status as obstruction on the one hand and moving picture of interest on the other. I told Alabaster that I could not bring myself to do it. He reminded me that it would be easier when the Winter Wonder Maze came down. But that will not be until January 2.

It was Alabaster also who, when I apologized for not being more present because I was concentrating so hard on just getting around the house, made the connection between what I am experiencing and John Hull’s struggle in Notes on Blindness, which we saw last month at Film Forum.

Towards the end of the film, Hull and his wife and kids travelled from England to Australia to spend time with his parents. He had not been seen by them since the final calamity struck in England, and their shock and awkwardness regarding their adult blind son combined with his feelings of incompetence in an unfamiliar place, made the visit one that was uncomfortable physically and psychologically, gladly left behind and never to be reenacted. In the film, the trip to Australia represents a climax of struggle for John Hull, after which Hull experiences such a sense of relief that it leads him to his ultimate acceptance–almost embrace–of his blindness.

It’s true that I, like Hull, feel a little helpless and useless in this unfamiliar environment, but it is different insofar as Alabaster’s parents only know me as a blind person, and seem mostly curious and accepting. On our first full day here, his mom took me on a touch tour of the house so that I could feel the elves and Santas and trains and villages with church steeples set in snow. The biggest obstacle to my comfort is that I’m really bad at being a blind person. While I feel ok stepping slowly around the several Xmas trees and candle-laden tables in the basement living area to get from the couch where I sit writing to the bathroom, I prefer it if no one is watching me play this very unexhilarating game of pinball.

Once alabaster’s dad came downstairs just as I hit the couch on the far side near the bathroom, but on the wrong side. So with him looking on, I had to negotiate around the couch, Xmas tree number 33, hit the glass cabinet (gently and as a comforting reference point) to slide into the bathroom with a sigh on my side, and some little congratulatory remark on his.

Godin in red, hand on hip, standing in front of winter wonder mountain village on top of mantle.

I work hard to do my slow bumbling thing out of the sight of others, which is why traversing the path of the TV and train room to the kitchen is unbearable, and I generally hop on the Alabaster train. This is not necessarily less embarrassing than going it solo, but simply gets it over with quicker.

Other parts of the sprawling house are easier to traverse because they are less spectacle inducing, though it must be said that the architect was stingy with right angles. The stairs into the basement living room where we work ascend towards the front door so that it is just a matter of turning the corner to the left to slip down the crooked little hallway to our bedroom on the main floor. Well maybe not so easy, for there are several fickle Christmas wreathes extending from the wall like the human-arm candelabra holders in Cocteau’s Beauty and the Beast.

When we first visited a year and a half ago, it was springtime. If I wanted to get to the upstairs living room or kitchen I would follow the ungarlanded rail guarding the stairway and hit my comfy chair to sit and experience TV with one ear and listen to social media with the other. Or, I could turn right at the end of the railing, following the path of the mantle, into the dining room (which in other seasons is decked out in a nautical theme) and continue on into the kitchen, thereby avoiding the whole discomforting road between the couch and the TV. Unfortunately, that path is closed to me until the snow melts.

I guess this all begs the question why I’ve put myself in this position. Why have I left my comfortable Astoria apartment where I’d been shuffling from room to room for nearly 17 years, for parts unknown? Our plan is to be hobo artists for a year and then settle somewhere–maybe back to NYC, but probably not. And although I could not imagine taking this trip by myself at this point in my life (both for practical reasons as well as reasons of the heart), the experience is, by design, unsettling. A learning experience. Will I succeed in feeling more comfortable moving through the world as a blind person at the end of it? Will I be better at it? I don’t know.

The fact is that I never imagined staying in that Astoria apartment for so many years. I did not even imagine staying in New York for that long. When I arrived in New York to attend grad school, I had academic stars in my eyes. I thought I’d continue to move east for a while, slipping into some professorial path that involved feeling at home in many cities of the world. I’d already moved from my home in San Francisco to New Orleans to New York, and forayed to Paris during my first two summers in grad school, but then the adventure–at least as a forward moving trajectory–stopped.

Many factors changed my destiny and my mindset: my distractibility, my blindness, my ambitions, academia, downtown performance, karate (specifically a talent show night that put being a comedian into my head!), and a feeling that academia was not exactly what I had wanted when I was a kid, but seemed the most likely.

Strange to say that the ADA has done great things with education regarding blind people since 1990, but less in what is possible after school. Getting a college degree and continuing onto grad school seemed the least resistant, most doable path for me.

Blindness forced a desire for comfort and stability that was not in my nature. When I was a visually impaired teenager, my biggest fear regarding the high probability of future blindness was a loss of independence. These days I’m not so independent physically, but my mind feels quite free.

Although I did not pursue a career in academia, the mission remains the same: to think expansively about blindness as both a physical experience and a metaphorical  construct that is in dialogue with some of our most fundamental conceptions of humanness. From my dissertation to my short-lived standup endeavor                                                                                 , my solo show to this article, I attempt to expose and collapse distinctions between these two ways of thinking about blindness, to trouble the waters between the literally blind and the figuratively blind, seriously and with humor.

But how can I continue to fulfill this life’s work if I close myself up to the world? I think the comfort of living in the same place for so long made me less open to humanity in all its particulars. So I’m out here in the wilds of Colorado, not yet having an adventure in the ordinary sense, but priming myself for it.

winter wonder maze view from front door, including  descending stairs , with garlanded  rail and Christmas lights extending into the distance.

Distillation Installation: With All Four Senses and Remembered Sight

Godin with head at Stravinsky's level on braille table top

Seventeen years of living in a three-bedroom Astoria apartment distilled into one art installation: so much lost and gained; so many things dismantled and recreated; so many memories… I lived and worked in every room of that home. Beginning in the front room with my first guide dog and the boyfriend whose munificence allowed me to remain long after us, to the back room where I came into being as a blind person and an artist. Once I looked out the window to fire escape and cherry tree, the identical buildings across the yards, but, upon my departure, I saw only a pixilated rectangle of light.

I last moved towards that window to open the curtains for Stravinsky, a creeping pothos (Epipremnum aureum) I bought to commemorate the untimely death of my second guide dog Igor. Igor’s poem, To Stravinsky, ensured that his plant spirit would occupy the living center of Distillation Installation. Also his small relics made into a piece whose description sounded, “Glue on memories.” (I audio labelled title and description cards with my PenFriend, dots that speak with my voice when touched with tip, analogue/digital magic!)

Finally, in later years, I came to rest in the dark corner room, dubbed the bat cave. Its purple walls with a genie providing pulsating light and smellscape in the last days, days when future was uncertain about everything except the important things: art and love, love and art, warm stability with our two hearts knocking out a stronger beat, keeping up the simple hard tune, “desire is suffering, desire is suffering, desire is suffering…”

So much potential had to be tossed. Braille books and maps, fabrics that wanted sewing, yarn that wanted knitting, paints that wanted painting–so many things collected and hoarded in the late stages of dissertation-that-wanted-writing. Throwing so many things out seemed so sad–so much potential lost that I conceived making an installation out of some precious drops of it. for months, I put things that might be of value in one corner and made bags for the street scavengers to pick through and utilize, minimizing landfill.

Godin with her hand sewn dresses hanging high.

I’d decided years ago that I had enough clothes and began repurposing. Too many things in the world. Too much crap. I kept ahold of my crap so that I would not be so tempted to buy new crap. With that in mind I first put fringe on deconstructed sweater and kept on with my refashioning old things into new by hand sewing. But of course, there are always things to buy that are not clothes–technology and musical instruments–and I can’t make shoes…

Distillation Installation manifested in the once-living room, the home’s center, with tin ceiling painted over long before I arrived. As I worked, around me as I sorted, discarded and built, its cracked paint fell about me in apocalyptic chips.

The braille blinds were the first part of the installation. “See ya later world,” I thought as I sewed double-pages of a Dr. Jekyll and Mr. Hyde braille book together, and lay them in cascading strips from the wrought iron double bar curtain rods bought in the early years of domesticity.

Then began the odoriferous papier-mâché experimentations. If I’d had a budget I would have invested much more heavily on smells, because flour takes a scent, is cheap, and good for sticking odd things together (pink taffeta on shovel) and mummifying others (drum music on accordion), but aromatic distillats, the cells of plant matter burst asunder to capture their aromas in oil or water, are rightly expensive. In the end, I could not give each piece a signature scent. But the room was scented: eucalyptus (Eucalyptus plenissima) and lavender (Lavandula angustifolia) bubbled in the ultrasonic diffuser in the Never Be Sorry exhibit, and in the corner under Prague Castle, a fan diffuser blew sweet orange (Citrus sinensis) and black spruce (Picea mariana), while the hanging braille cranes were lovingly spritzed with orange blossom water from the bitter orange tree (Citrus aurantium).

Godin tilting sunglasses at hanging braille origami cranes.

My origami braille cranes–not a thousand as planned, but a lot–hung from wire hangers suspended on the five blades of the dusty ceiling fan with three colored lights–blue red green–in the center sockets for a soft organic look.

Beneath sat Stravinsky on his personal braille-mâché tabletop–the last-minute decision that worked well to create small gasps when the curtain opened on the night of the goodbye tours.

I see it all in my mind’s eye and am proud to have done this thing–compensatory vanity! And why not cover over the mirrors (if I can’t look at myself why should anyone else?)–the gilt one sacrificed its mirrorness first, covered over by gold dust and finger paint scrawl, “Never Be Sorry,” another poem-inspired exhibit.

and “by following the scent” near the end–mirror removed from useless vanity, covered and dusted in mist and pink lipstick. Goodbye to the stage and the music and the light. Hello dazzlement and words and another trip in new places. No guilt just a bomb left behind, time tick tocking until another home will be made and destroyed, until the end when I leave all homes for the last time, leaving behind a fine distillation of my experience of the world, overwhelmingly flavored by brilliant hallucinations and this long eye disease my life.

Godin pointing at her self portrait, an abstract finger painted head on a reflector tape wall.

[All images by Geo Geller. Check out our conversation in Distillation Installation 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.

To Stravinsky, a poem in memory of my guide dog Igor

November 13 is the birthday of Igor, my last guide dog. It is a day to celebrate his short life as well as the diligent and loving lives of guide dogs everywhere. Please consider a donation to the fund I set up at the Animal Medical Center in honor of him and my first guide dog, Millennium.

This week Stravinsky, Igor's plant spirit, found himself front and center in the Godin's World Fair, amongst colored lights and origami braille cranes.

To Stravinsky

I write to you, Stravinsky,

Because he, for whom you are named,

Is nowhere to be found.

You sit on my desk next to keepsakes

From his short life

And are easy to take care of,

Therefore easy to love.

 

Let me tell you how you came to occupy

This tiny exalted place…

 

Three days after I lost him

I cleaned mindlessly,

Brought out the vacuum and went to work.

Being blind helps forgetfulness:

Out of sight out of

 

BAM CLATTER

 

I hit the aluminum dog bowls

And probably shrieked.

I picked up the two bowls

As if they might bite or squirm

And dropped them into recycling.

Then I went and cried in human arms.

 

In those arms,

Deep within my sobs,

I conceived a ritual from nowhere,

A rite of spring.

 

I want to go buy a plant tonight,

I will name it Stravinsky,

Spirit of Igor.

 

I picked out and washed the water bowl,

Set it on my desk,

Another empty vessel.

 

At the florist I asked for a plant

That was easy to take care of.

The woman named one

And I asked if it was viney.

She said No,

That one stood straight up like a tree,

A popular plant,

Recommended by some celebrity doctor

For its air purification properties.

 

I was not interested in pure air.

I wanted prehistoric leafy tendrils

Of encroaching flourishing

With minimal fuss.

 

Like all dark relationships,

Ours, Stravinsky, is complicated.

 

I might have hated plant life

Since green grass tempted him

And led him to swallow the neon vine

 

That stuck in his stomach

That led to the surgery

That sliced the tiny incision

That led to the microscopic sepsis

That led to the systemic failure

That led to the pneumonia

That gave final cause for his

Being nowhere to be found.

 

But I do not believe in fate

Or in the culpability of nature

Any more than I believe you to be

A fit substitute receptacle

For my I love yous.

 

Even so,

I love you Stravinsky.

In his bowl I keep you

Healthy and happy.

It is easy to water

You every ten days,

Gratifying to have your reachy growth

On this simple expanse of desk.

Still, if you do not outlive me,

I doubt I will cry at all.

*This poem was first published at Quail Bell Magazine*

Helen Keller Quotes Explosion

Star of Happiness promotional shot. Godin kneeling in silver and black with loop pedals. Cathryn Lynne Photographer.You kneel on the floor with two loop pedals in front of you. Above you hangs a projected red curtain and an empty spotlight. you say, “Oh, fuck it,” and hit one of the pedals, which causes The Star of Happiness theme song instrumental interlude to play.

“I was born with a degenerative eye disease called…” you hit the loop pedal twice quickly in order to catch “cone-rod dystrophy.”

“This means that, since I was ten years old, I’ve been going very slowly blind. I’ve occupied many positions on the sight/blindness continuum. I’m more blind than sighted now, but it’s not always been like this. Perhaps for you, going blind is the scariest, or at least one of the scariest, things imaginable. For me, thinking about losing another sense, especially hearing, is really scary.

“When I started reading books by and about Helen Keller, I suddenly developed a ringing in my ear. It was likely psychosomatic. (Wouldn’t have been the first psycho symptom I’ve exhibited.) Around that time, I had a dream: I was Helen, in the last years of her life when she was confined to bed by old age illness. We were insensible to sights and sounds As she had almost always been, but now, unable to move, we were deprived of the incessant, impulsive force that had launched her, a crazy deaf blind caterpillar, feelers electrified and electrifying, meteorically into a world that could not get enough of her, and of which she also could not get enough.”

Behind you on the screen, images of Helen from earlier in the show slowly spin around the projected spotlight, then break away.

“Now, after living nearly ninety years of a life that included such varied occupations as…” you pick up “political activist” and “vaudeville performer” into the loop and continue, “and ” after World War II, after America dropped bombs etc., she became an officially sanctioned, unofficial…” you catch up the following into the loop, “ambassador of American peace and good will,” and continue. “Two million Japanese welcomed her when she visited decimated Nagasaki and Hiroshima. They loved her that much!

“but my dream was set in a time past all that, so that I experienced what it would be like to have a sensory existence that extended no farther than the cocoon like bedding in which we were wrapped. Excepting slight tremors and vibrations through the floor, And the occasional touch of an attending hand…” you hit the loop pedal, “THERE WAS NOTHING.”

“However, in the double visioned way dreams sometimes unfold, I was trapped in her immobility with her and seeing her inert body as if it were an out of body experience, without much height or distance. The perspective was split: both inside feeling out and outside looking in.

“The in-body perspective was that of the cornered small animal trembling with the desire to escape, that of the suddenly quadriplegic wishing impotently to die, that of the tongueless victim left alone to tell her tale.

“While the out of body perspective was that of the achingly detached observer, that of the nonsensical buzzing fly, that of the sole audience at a wake. From here, the bed on which we lie, appears, in my mind’s eye, to be a tabula rasa, our body a lumpy virgin landscape.

“But this is my nightmare, not Helen’s. Helen believed that there was an eternal, heavenly, fully sensing body waiting for her to step into after death.”

You hit the pedal and pick up what Helen says, “It gives me a deep, comforting sense that things seen are temporal and things unseen are eternal.”

You say, “Now she is the star of happiness to all struggling humanity.”

Helen says, “Alone we can do so little, together we can do so much.”

You say, “If Helen Keller fell down in the woods would she make a sound?”

Helen says, “I was strong, stubborn, indifferent to consequences. I knew my own mind well enough and always had my way, even if I had to fight tooth and nail for it.”

Helen says, “I am not dumb now.”

You put down the mic and hunch over your workstation on the floor. You feed Helen Keller quotes from one pedal into the other, adding to the increasingly chaotic mix. Above and behind you in the projected visionscape, images likewise become disjointed and frantic.

Helen says, “Every one of us is blind and deaf until our eyes are opened to our fellow men, until our ears hear the voices of humanity.”

Helen says, “It is not required of every man and woman to do or be something great. Most of us have to be content to take small parts in the drama of life.”

Helen says, “I seldom think about my limitations, and they never make me sad. Perhaps there is just a touch of yearning at times; but it is vague, like a breeze among flowers.”

Helen says, “I really care for nothing in the world but liberty, liberty to grow mentally and spiritually, untrampled by tradition and arbitrary standards.”

Helen says, “Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.”

You hit the loop pedal one final time and the theme song plays its refrain, “Wonderful star of light wonderful star of light wonderful star of light…”

You are done. you look up into the audience, then crawl stage left as if you will exit, but stop at the edge to sit and apparently observe the strangely calm cycling of looping fragments. The soundscape grows louder while the lights, almost imperceptibly, grow brighter, until the stage and the audience are drenched in artificial light.

Crescendo.

Whiteout.

THE END

Star of Happiness promo shot. Godin in silver and black bent over loop pedals on the floor. Cathryn Lynne Photographer.