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*

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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*

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Audio Description & Sound Design in Star Wars: The Force Awakens

Back of Godin's head wearing earphones attached to personal DVD player, screen shows Star Wars opening title.Last week I enjoyed my first blockbuster movie with audio description Star Wars: The Force Awakens! Overall, despite the unbelievable ending (spoilers below) it was a great experience. Alabaster‘s dad, having worked behind the scenes in film and TV, is a movie fanatic, and has a huge collection of DVD’s. He noticed that many of the newer Blu-rays come with an audio description track, which can be turned on at the menu. (Unfortunately, on a typical Blu-ray player, the menus are not accessible, but perhaps this could be remedied on a Blu-ray equipped laptop.)

I was certainly curious to check out one of these movies, but Alabaster’s parents were actually the first to experience Star Wars: The Force Awakens with audio description. They had put it on to test it out, after we’d gone to bed and told us the next morning that they’d ended up watching the whole thing with the audio description going because it was “so cool–almost like listening to old radio shows.” When I learned this the next morning, I was both excited and jealous. “They watched it without me?” and Alabaster was like, “See, they do like you!” Right. That’s good.

The first time through Star Wars: The Force Awakens, we watched it together on a TV, and from the moment it started, I was drawn in, since the audio describer read the words as well as what was happening to the words:

“Growing ever smaller, the words continue to crawl away into infinity. … The tiny illegible shapes of the last few words finally disappear completely into the vastness of space.”

 

Not only is this a lovely and immediately recognizable image, calling to mind the first time I saw the first Star Wars in the movie theater when I was six and perfectly sighted, but it also resonates for me personally, symbolizing the progress of my degenerative eye disease.

In case you’ve not experienced an audio described movie, an article at WGBH.org about one of the major suppliers of audio description (as well as captioning), MoPix, explains: “Description conveys the key visual aspects of a film or television program by describing scenery, facial expressions, costumes during natural pauses in dialogue.”

By the way, a Justice Department amendment to the ADA requires theaters to “have and maintain the equipment necessary to provide closed movie captioning and audio description at a movie patron’s seat whenever showing a digital movie produced, distributed, or otherwise made available with these features;” and will take effect in January 2017. So all my blind buddies can look forward to having a theater near them play the next Star Wars with audio description. This will be the subject of a future article, and I look forward to speaking with a representative of Media Access Group at WGBH soon. So consider this the first in a series–the sequel is in production!

For about the first 30 minutes of Star Wars: The Force Awakens, there’s probably not more than five minutes of dialogue, so it’s a really great thing to not have to task your companion with so much information gathering. However, when there was dialogue, the mix felt wrong; the audio description voice was too loud, creating a sense of distance from the on-screen characters. The main character became very quickly, the Brit reading the audio description, rather than Rey or Fin. Kylo Ren came through quite clear, though a bit lacking in gravitas, as if he were not only talking through a mask but also stripped down to a mono track. This was less the case as I listened privately the second time through with headphones on a portable Blu-ray player lent to me for the purpose. The ideal situation would be to be able to mix the sound volumes of the audio description and soundtrack oneself.

That said, listening with headphones was a much better experience, though I think the mix could still be more balanced, as the audio description dominated the sound design. But perhaps that’s just me; I am a bit of a sound geek, as demonstrated by my soundscapes for short films and readings. If you’ve no idea what goes into sound design for a blockbuster movie like Star Wars: The Force Awakens, here’s sound designer Matthew Wood discussing the many layers of sound in an interview with The Daily Dot:

“The main elements of a soundtrack are the dialog that’s recorded on the set; the dialog that you have to re-record after the production—because of line changes or droids or helmets or technical reasons that they didn’t get recorded on set properly. That’s called ADR. So there’s the dialog, the ADR. There’s the sound effects that you take from library, which would be the classic sounds that were made for Star Wars. And then there’s the new sound design that’s created specifically for the movie, so that’s part of the sound-effects track. There’s the foley; that’s all the very specific sound effects that are really too specific to be found in a sound library. And we have performers go through the film and we spot every little moment where that might be. And they actually perform them, like an old radio play. And then we have, obviously, John Williams’s music.”

Consciously or unconsciously, a good sound design is intensely satisfying, and can be especially appreciated by blind moviegoers. As a blind person, I find that with movies I loved as a sighted, or partially sighted, person, I can enjoy the action through the sounds. A good example is Apocalypse Now! Which I’ve probably experienced more times than any other film, and my appreciation of it has only deepened in the twenty or so years since I first saw it as a visually impaired person. Its sound designer, Walter Murch, is a legend in the field and the (at the time revolutionary) surround sound effects are memorably visceral. If you really want to geek out, here’s a cool article at Filmmaker Magazine about the iconic ghost helicopter sound that opens the film.

Star Wars VII sound designer David Acord told The Daily Dot in an interview, Murch, along with original Star Wars sound designer Ben Burtt, are the “two people that come to mind as far as the people that are considered the godfathers of sound design. … Ben’s aesthetic for sound design—and I don’t want to speak for him too much—but it’s been an organic approach. It’s recording real-life sounds to be manipulated into something completely different.”

A fun example of this is how Acord turned his cat’s purring into Kylo Ren’s Force rumble:

“…he’s got this sort of chunky, almost animalistic Force rumble that he does when he’s interrogating and that kind of thing. And it’s sourced from my cat’s purr. It’s pitched and kind of slowed down, and it’s got a ton of low-end added to it. But you listen to it, it’s one of those things…it’s tough when you sort of pull back the curtain for sound effects, because then that’s all you’ll hear, is that. [laughs] But yeah, that’s Pork Chop purring.”

As I get more comfortable with a movie, the less I’m bothered by what’s going on visually. With movies I’m very familiar with, I find perfectly satisfying representations floating or zinging, as the case maybe, before my inner eye. I found this also to be the case with The Force Awakens. Granted knowing that the aesthetics of the original 1977 Star Wars influenced the making of Star Wars VII, helped with the formation of new visuals, but I was amazed how much listening to the audio description track helped my inner eye form new mental pictures for a movie never seen by my physical eyes. So much so that the third time through, I scanned backwards to listen to my favorite scenes without audio description, in order to enjoy the sound design, the dialogue, the music and sound effects with only the Force of my inner eye to guide me.

The first scene I scanned back to without the audio description was the saloon scene in Maz’s Castle–a callback to that original Star Wars cantina scene, now quite hackneyed, but still so enjoyable–to hear the strange new creatures and silly karaoke style singing. It was nice the first time through to have the audio description give some details about what’s happening and to read the subtitles (a very helpful feature), but the overwhelming feeling I had was, “SSSH, let me listen!”

I found the torture scene where Rey finds the Force and frustrates Kylo Ren’s attempts to get information from her particularly crippled by the audio description, as it is so intimate. What may be gained from knowing, for example, that Rey grits her teeth, or that Kylo sets his jaw, is not worth the feel that someone is shouting in your ear while you are trying desperately to eavesdrop on something juicy.

Here’s sound designer Acord, from his Daily Dot interview, talking about that scene:

“There’s a scene in the movie where Ren is interrogating Rey as she’s shackled to the torture chair, and they end up having this sort of Force battle, basically, where at the end Rey has the upper hand and has basically entered Kylo’s mind and releases some of his darker thoughts. That was a fun moment for us. That’s a pure sound-design scene in the purest sense. If you’re a person standing in that room with them, you don’t hear those Force sounds. All the Force sounds are meant to be feelings; that’s not a literal thing. If you were standing there, you wouldn’t hear anything, except maybe the rattle of her chair. So that was a fun moment to play with that, to play with the back-and-forth, with the Force ebbing and flowing between the two of them, and there’s…music comes in about halfway into that scene, so there’s a bit of a dance you have to do as well with the music.”

That scene is also really cool because the reveal–that Kylo is a perfectly normal human under his “leather-and-metal head appliance that looks like a domination mask by way of the grille of a 1952 Chevy” as a New York Times review put it–is both a vocal and visual one, and the shift from the digitally distorted and pitched down voice of the actor Adam Driver to his normal voice must be as startling as the visual unmasking.

This villain is not, as granddaddy Darth Vader was, forced to wear the getup because of horrible life-threatening deformities. Blind or sighted, we understand immediately that This bad guy is trying real hard, so that, as interesting as the face and voice is under the freaky prosthetics, his badness is all too human.

Here again is sound designer Wood (excerpted from The Daily Dot interview) describing the process of working directly with Driver:

“I was able to work with Adam Driver really directly and build the process for how his voice was going to sound in that mask. We built [it] in sound design and actually took it to Adam and got him to play with it. He could hear the process of his voice through the mask as he was doing it live, so we could use it like an instrument and play on it. So you could get these really creepy performances of him playing a very intimate recording right up on the mic. And yet it has this distorted, otherworldly feel through the mask, so it still keeps [dialog] intelligible. That mask’s sole function is to intimidate. It’s not keeping him alive like it [was for] Darth Vader; it’s just a mask of intimidation. We really wanted to work with that.”

And, because we at Godin Rhumb SoundWorks have our recording studio set up in the walk-in closet, I cannot resist giving a little more from Wood:

“At one point, we had to record when Adam was rehearsing for a play in New York. We set up across the street in a hotel across from his rehearsal space. And so he’d run over to us, and we’d work in a hotel room. We outfitted the closet in the hotel room as a makeshift recording room. So he’d come in and we’d work on it, [and] we’d send the files back to J.J. to see what he thought. That was some guerilla sound design, and Adam was really up for it.”

Learning about the making of a movie is helpful for anyone to geek out and appreciate it more, and this is particularly the case for blind moviegoers, so feel free to comment below–as a blind or sighted person–about the audiovisual details you found exciting in Star Wars: The Force Awakens.

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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.

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A Paris Wasting, Catherine’s story from Death of Godin

Saint Catherine of Siena 19th century painting (anonymous). She wears a nun's habit and a crown of thorns. Her head is encircled by a halo, and in her hands, she holds a cross and a flower.Catherine had been exalting in out of body bliss but the flesh sucked back. I must get up. She rolled onto her belly and lifted dizzily onto hands and knees. She executed a wobbly circle on the futon that lay on the floor and pointed herself towards the kitchen. A kitchen made for one in a studio apartment made for one on the Rue du Faubourg Saint-Antoine, but just exactly like so many other such solitary places she had sublet around the world.

Catherine opened the little refrigerator and slammed her eyes shut. The lurid light pierced her brain. She groped amongst the cold. She took ahold of the distinct jar. Then in the door, the bottle. She pulled it out. So heavy. How would she get these things over there by the window where she wanted to be? Baby steps. Her favorite coach used to say that the only way to do the impossible is to break it down into its constituent parts and tackle one bit at a time. Of course, in the end, you simply had to forget all and just let the horse jump.

With her eyes still shut, Catherine put the bottle in one hand and the jar in the other and slid them ahead as she crawled behind along the narrow path between the futon and the television. When she felt she could go no farther, she opened her eyes and saw the dim dawn filtering through the pale curtains. Her head felt so heavy that she wanted to drop it and the whole endeavor but willed herself to want food and water instead. If she did not fight her body, her mind would surrender to the calm inevitability.

Thankfully, the bottle’s top had already been opened. It exuded a small sigh. She lifted it and drank an explosive sip. She put the bottle down and held the bubbly water in her mouth, afraid to swallow. She lay back carefully, pointing her knees up in defiance of the desire to be prostrate. She tapped the count, One. Two. Three. Swallow. She waited, fighting with all her might not to wretch. Please stay down. The water felt positively poisonous Trampling along her esophagus. It pushed into her lower organs. This was the crucial moment. Though some would argue with her, she did not want to die. It stayed down. Give that girl a ribbon!

She let go the bottle and, still lying down, took hold of the jar. It was an unmistakable shape, bought during her first exuberant week in Paris. She had been eating then. But as the empty days of writing-avoidance stretched on, the old familiar lack of hunger set in.

A Paris month had barely passed when she’d begun translating Baudelaire, even knowing that, though it was gratifying, it was not her novel, merely a diversion with dangerous pitfalls. Almost as soon as she’d started translating, she’d stopped going out. Catherine recognized the signs, but the feeling that she was accomplishing something became her drug and she would not have gotten out of bed without the dictionary and Le Spleen de Paris to draw her. She rationalized that she was preparing for her reimmersion into University life, but it had all been superfluity. The disgust and fatigue soon weighed her down and pressed her into bed. She stopped visiting her desk. Dangerous time had passed.

This was precisely what they—the doctors, her family, her few friends—had all been afraid of. The decision to go to Paris in the summer so long before her teaching position started, with nothing (as they saw it) to do seemed to them an eccentricity fraught with foreboding. For Catherine, it was the writer’s dream. Three months of solitude in the city of writers!

Eyes averted to the ceiling, she unscrewed the top and stuck her index finger blindly into the goo. Then, extending the soiled finger away from the jar, she screwed the top and let the weight of it drop to the floor. She folded her hands, right over left over her ribs. Except for her knees and the straightened finger, she might have been a corpse.

An unsought memory put her eight-year-old self with her friend Michelle at the kitchen table of her family home surrounded by grey paper and charcoal horse drawing efforts. They were eating Nutella and giggling. It must have been a rainy day. Catherine’s cracked lips parted into a painful smile as she remembered the paces she’d put Michelle to when the days were fair. Catherine would set up hurdles and time her friend over them, all the while judging as she would have been judged herself in the children’s competitions.

It had all been so much fun then. When did it turn ugly? It had been gradual, that shift from love to loathing, but the beginning arrived with puberty, when the coaches turned mean and the friends turned competitive and the competitions revealed their ludicrous pomp. When the dream of starting fresh in New York City became a reality in the form of a Columbia acceptance letter, Catherine quit show jumping, suddenly and without explanation. The insular world had been stunned. Secretly she wanted to be involved in what she naively thought of as the real world. She did not want to move blindly through college as she had through high school, thinking always of the next show or the last. Silently she had planned to reinvent herself as a writer and intellectual. But the triple major and endless clubs and activities put her into a fever pitch of excitement that was not unlike her final years of show jumping so that, if she were very honest with herself, her metamorphosis had been incomplete. The truth became undeniable when grad school was put off for the first of her hospitalizations.

Grad school was reclaimed, but from then on, each time she moved, from New York to Russia, China to Honduras, she would think the loneliness and anorexia were gone for good. It was her fatal flaw to believe she was cured. That hubris that suggested sovereign power over self had been inherited from her father. But what fueled Mr. James Mirth, CEO extraordinaire, consumed his daughter. Inevitably, almost without her being aware, the evil twin pillars would rise again out of the seemingly smooth sea of activity and bar her way to happiness. Finally, again, she would have to be rescued from her far-flung existence.

Her family attributed her troubles to her excitable nature, and constantly tried to dampen it. They were not misguided. She had seen for herself on countless occasions that her enthusiasm was off-putting to people who did not know her well. And worse, though she felt it to be right to be passionate, her passions too easily turned into the flames of an insatiable furnace that burned up all mundane appetites.

Catherine had no religious convictions to speak of, but she sometimes felt like her anorexia had more in common with her saintly namesake than might be expected from the average intelligent, cosmopolitan, twenty-first century woman. As a self-examining humanist type, she hated that she did not understand this part of her. She considered her Nutella dipped skeleton finger. She considered her literary ambitions. She felt a failure. She was thirty-three and on the verge of dying a starved virgin in the city of food and love.

Catherine rolled her burning eyeballs to the left at the neglected desk. Could she ever admit this to her pen? Was it somehow lack of honesty that made writing so hard? Her novel suddenly seemed false, a translation of her show jumping prodigy childhood into a concert pianist prodigy childhood. Was it subterfuge or merely an attempt to write fiction rather than memoire? A lesser genre if you asked her.

Her head ached. She could not figure this all out now. The important thing was to fight the urge to give up. She did not want the story to end here.

Letting go of intention, Catherine lifted her hand and kissed the back of it, as you would that of an Orthodox priest, her hand even more boney than those consecrated Russian ones. Thrice she lifted and kissed and then, thoughtless, she put the Nutella into her mouth. Please. Stay down, she prayed to her body. Beneath the waves of nausea that threatened negation, she felt a feeble acquiescence echoing deep in her hollowness.

 

[First published in Newtown Literary Issue 7. You can read about the investigation into the mysterious death of my childhood friend that gave fuel to this story in “The Detective Story Behind ‘A Paris Wasting'”.]

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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!]

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