My Pitch Video and Application for the Holman Prize for Blind Ambition 2018

I learned about the Holman Prize from my Friend Laurie Rubin last year, but did not have the time, nor a clear project to pitch, but this year I was ready and waiting!

I managed to talk Alabaster into being my videographer, and we learned so much in the filming and editing of this little video, that I’m pleased to leak the possibility of some Alabaster Rhumb music videos coming soon… Speaking of Alabaster’s music, it is his song “Bird in a Tree,” that plays in the background of my Holman Pitch video, sped up and with a French horn taking the vocal line.

I also enlisted my long-time film collaborator, David Lowe, to help with the audio described intro sequence, but he went far beyond the call of duty by adding magic to our final cut, including somehow making our rather uninspired hill appear truly golden!

And without further delay, I urge you to watch, and like (the social media winner is guaranteed a spot in the final round of the competition), our 90-second Holman pitch video:

 

What is the Holman Prize?

The Holman Prize is the amazing brainchild of Lighthouse for the Blind and Visually Impaired in San Francisco, which was coincidentally the first blind organization I ever had anything to do with, as I grew up and started losing my vision in that city. For a little more on those early days of visual impairment, check out In the Beginning Were the Eye Doctors.

In fact, I even volunteered one summer at their Enchanted Hills Camp, which was partially destroyed in the recent California wildfires, so please consider a donation to that worthy summer camp for blind and visually impaired children and adults.

Last year was the first of this annual international competition, which awards up to $25,000 to each of three blind or visually impaired winners to help them make their dream projects come true. Here’s a short video about the 2017 winners:

The pitch video is the main component of the first round of the Holman Prize competition, which also includes a written application with short answers that helps to give context to the video, and introduce the candidate and her project.

So I thought I’d include some of my application answers here, just in case you also would like to have my pitch video contextualized!

Enter the basics of your project and give us any details that aren’t in your video pitch. Max 200 words.

Aromatica Poetica is my new magazine dedicated to the arts and sciences of smell. It is not especially for blind people, but, as a blind person connected in the community, I will encourage blind and visually impaired writers. Thus, the annual writing contest is vital to this project, which seeks to offer an alternative to sight-centric writing.

With the Holman Prize, I’ll be able to publish the first issue and have a launch party. I feel confident that after that initial issue, we’ll be self-sustaining and eventually profitable. The advertising possibilities are endless: fragrance, wine, spices, sweets, coffee, tea aromatherapy…

The trip component is inspired by James Holman, and will seek out strange new smells–from flowers and wine to volcanic rock and olive oil. It will provide the fodder for the feature story for the inaugural issue of Aromatica Poetica.

In the making of this pitch video, I’ve developed a healthy appreciation of audio description. I would have liked to provide more, but 90 seconds is not very long. For you blind judges out there, please know that I’m toasting you with a lovely-smelling glass of red wine at the end, and that accessibility is always on my mind.

Tell us a little about yourself: write a short bio, tell a funny story, tell us about your passions, or do whatever you like! We want to know who you are. 150 words.

I received my PhD from NYU in 18th century English Literature, then promptly turned around and wrote and produced two plays: about Helen Keller’s time on Vaudeville, and about the sexy history of the invention of braille.

As an actor, I’ve landed a national commercial as well as other smaller gigs. As a writer, I’ve written for O Magazine, just sold a story to Playboy, and have work in many less notorious literary and commercial publications. As a publisher, I’ll be able to encourage diverse voices and aesthetics.

Smell, “the fallen angel,” as Helen Keller put it, has become a passion of mine since metamorphosing from visually impaired to blind, and I want to share that passion. Smell needs vocabulary and great writing–fiction, nonfiction, poetry. The underdog sense can expand the world of blind and sighted alike, and Aromatica Poetica is here to help!

If you plan to travel, please enter those locations in a simple list.

France (Paris, Bordeaux, Grasse), Italy (Florence, Sicily/Mount Aetna), Greece (Athens), Bulgaria (Kazanlak/Valley of the Roses), Turkey (Istanbul).

Please tell about your visual impairment (100 words).

I have a cone rod dystrophy that started when I was ten, which has, very slowly, pushed me along the sight/blindness spectrum from normal sight to near complete blindness. Most of my life was spent as a visually impaired person, but in the past few years–perhaps 5 or six, I have considered myself a blind person, as I have no usable vision. These days, I can see an occasional chink of actual light in my far periphery, but other than that, it’s all kinds of pixelated snow fuzz with occasional hallucinations, courtesy Charles Bonnet Syndrome.

Ok, that’s it! What do you think? Before you decide, I suppose I should invite you to check out my competition

Cheers to all the blind ambition in the world!

Adulterated Rose or, The Smell of Regrettable Youth, Essay 7 of #52essays2017

The guy with the hard metal name was beautiful in my degenerate eye. Beautiful with a girlfriend. And a Volkswagen bus. This was around the time of the earthquake of ’89, when the influences of flower power still loomed large in San Francisco. I’d been pining for so long and then he said they’d broken up. We climbed into his bus and he put rose oil (adulterated, I recognize in my mind’s now more refined nostrils) under my nose and kissed me. When I give myself a little credit, I remember thinking it a cheap trick. I was young, but I knew enough to recognize that when it was over the smell under my nose was gone.

Red and white vintage VW bus model.
Sheet Metal Car Camper Vw Bus Volkswagen Model Car

The guy with a name that reminds one of welders, returned to his girlfriend and told her what we’d done, which made her hate me. That hurt too. I then glimpsed adulthood, where quotidian comfort trumps experimental romance.

Then I moved from my mom’s place in the Richmond District to 1462 Haight Street. Out the front door to the right was Ashbury and below a diner. Lazing on Haight Street, breakfast eggs and potatoes stick in the craw. It is this stuckness of regrettable youth that stinks like All You Knead. To live above a mediocre diner, to smell its unclean smells, and still to eat there is a kind of willful anosmia.

Haight and Ashbury street signs.

Similarly, being 19, mostly ignorant and a masochist, I adopted the scent of fake roses, bought for 10 bucks down the street in a crystal shop or some damn woowoo place, as my own. Not sure if I made the connection, but I still loved the smell after the encounter with the guy named for a metal that was the material of which the VW bus that had so briefly cocooned us was made.

Recently, long since those days of low self-esteem and unrefined judgement, I’ve had the pleasure of smelling real rose oil, bought in a precious one milliliter vile, Rosa damascena, and it is sweet and innocent–pink flowered and pure. It is warming to the heart, not meant to bump you upside the head with a reification of sex.

These days I often look to aromatherapy books when I’m feeling grumpy . Keville and Green tell me that it was the poetess Sappho who dubbed rose the “queen of flowers”:

“The fragrance of rose inspired poets and lovers throughout the ages, and it has been used to ‘open’ the heart and ease grief, heartache, loss, and sadness. … Employed for relationship conflicts, envy, anger, and intolerance, it is comforting, supportive through crisis, and an aphrodisiac. It also helps alleviate depression, anxiety, fear, insomnia, and lack of confidence.”
Vial of rose oil on white background.I need to save my pennies for another tiny vial!

And yet, sometimes I feel guilty for my greedy nose, and wonder if it is, even now, worthy of the holocaust of hundreds of flowers. In Aromatherapy I read that it takes up to 60 rose blossoms to produce just one drop of essential oil.

Roses are difficult to raise organically, must be handpicked, and do not have many essential oil glands, so it is often adulterated.

In the essential oil of rose, or rose otto (usually distilled from Rosa damascena) there are hundreds of distinct chemical constituents. At the risk of boring you, but in the interest of proving my point, I will include a few here (from Essential Oil Safety): Citronellol (16.0-35.9%), Geraniol (15.7-25.7%), Alkenes & alkanes (19.0-24.5%), Nerol (3.7-8.7%), Methyleugenol (0.5-3.3%), and so on…

Many more exist in trace amounts, which gives rose its complexity, roundness and depth. Unfortunately, chemists working in the flavor and fragrance industry tend to ignore this fact. They isolate major constituents and reconstruct simple versions of a complicated fragrance. The distinctly rosy constituent geraniol, for example, can be added to rose oil to extend it, but in the process, flattens out the scent.

Isolating a single constituent of rose is like isolating a personality trait, and claiming to know something about the whole person. I doubt any of us would like that very much! Nobody wants to be thought of as only gregarious, only proud, only smart, only funny, only a pain in the ass, only pretty. A flowers unique essence is made up of many things, just as we are, and to pin a couple of trope constituents on a formula created in a lab and slap the term rose on it, is as unconscionable (and comes from the same sad impulse) as bigotry and the creation of stereotypes.

Artificial aromas and flavors are so one-dimensional. And we’ve grown used to it. Eat a cherry flavored candy and you may name it as such, but what resemblance does the cherry flavor candy have to the real thing? Almost nothing. And unfortunately so many of us are weaned on such artificial flavors that we must be reeducated. Even “natural” flavors ought to be suspect in our noses as what is meant by “natural flavors” are organic compounds isolated and reconstituted to create a one-dimensional and highly duplicable taste. Cherries taste all kinds of ways in nature but only one way in a Skittle.

Before I remove my teeth from this subject, allow me to worry the bastards over at Febreze.

I don’t know if you’ve witnessed their ad campaign centered around the tawdry word “noseblind,” but let me just say that as a blind person (extremely tolerant of the liberal use of blindness as a metaphor), I find this term infuriating. I am blind. It is not a great thing to be, but it works its magic in its own particular and mysterious ways. Don’t take it away from me because you are lazy, because you know no actual blind people, or because you fancy them so far away that they would not even be watching, sorry listening to, television.

Why not nosedeaf, thank you very much. Certainly viewers would sniff at the thought of it!

You, Febreze, peddlers of terrible synthetic smells, coiners of mean and unnecessary words, create that which you profess to mitigate. I’ve walked into stores scented with your fruity monstrosities and fell to my knees, praying for anosmia. Anosmia is by the way the word you are wanting, and I suspect a willful ignorance, and kowtowing to the lowest common denominator, who may be put off by a word they do not know, keeps you from using it.

AAAH! Sometimes I truly hate this world with so much contriving that the very truth one professes, is in fact its opposite. And people eat it up. With their thought deafness and their mind blindness, and, above all, their tastelessness.

Quit being satisfied with the fakes, people. Demand the real. It may cost more, but as I mentioned in Sandalwood Love, there is nothing wrong with embracing the scarcity and complexity of precious things. I think it is not going so far to say that if you can’t appreciate these things in a flower, how can you recognize them in a person?

Rosa damascena postcard by resolute

*This is essay #7 of #52essays2017, written with all four senses and remembered sight. Read my previous essay “1984: Late to the Party Again” here*

1984: Late to the Party Again, Essay 6 of #52essays2017

Menacing cover of a Czech copy of 1984In the year 1984, I was in sixth grade, a scholarship child in a private girl school. The eighth graders were reading George Orwell’s 1984 and had plastered the walls with images of our headmistress that read, “Big Sister is Watching YOU.” We didn’t know what it meant, but we understood that it was witty and smart and that that group of girls was particularly beloved by the teachers, headmistress and principle and could get away with such things. Our class, dominated by girls whose anger and sadness ruled their intelligence, was not, I understand now, so beloved.

Though I’d started having trouble seeing the blackboard back in fourth grade, it was not until sixth that I began having trouble reading print. One time in history class, which I loved, I was taking a pop quiz and stared at the purple ditto ink, astonished and afraid because I couldn’t make out a single word. I raised my hand and told Mrs. Clark in a nervous whisper that I wasn’t able to read it. She turned the paper over and there was the quiz! We laughed. I told that story many times in those years when my eye disease seemed merely an odd anomaly, a predicament that presented problems easily solved in a class of 40 with smart caring teachers.

It was also in sixth grade that I was presenting a book report with my friend (with whom I would in another year or two vandalize the school one night with shaving cream), reading notes we’d written with pale blue ink that I suddenly could not read, and I stumbled over my part of the presentation. She laughed and snatched the notes away. It was not mean-spirited. She simply took control of what I’d not been able to do. I stood, as I would so often stand through my teens and twenties, very still, mortified. It was my great shame not to be able to read anymore.

In earlier grades, I’d been a great reader, a cocky little reader who’d gleefully raise her hand to read aloud and took pride in reading ahead while my classmates labored. I’d show off the adult books I was reading, pilfered from my mother’s bookcase, Agatha Christie mysteries, Gone with the Wind.

Some of my favorite memories of childhood are of reading in special places. I remember finishing Little Women while sitting in the branches of a tree in the huge shared backyard of my grandmother’s apartment complex. I remember reading the end of Jane Eyre, tears rolling down my face in the window seat of the library on 9th Avenue, where I’d wait for my mother to get off work at the clothing boutique around the corner on Clement Street. And I remember reading Poe stories on the bus ride out to the SF Zoo to volunteer on Saturday mornings.

By the time I was in eighth Grade, and it was our turn to read 1984, reading was no longer a pleasure but a chore. I never finished it. I bluffed my way through. If I had good lighting, was not tired, and did not mind how slow it went, I could still read for another year or two, but mostly, the act of scanning words with eyeballs had a hole in it. Where the words should be, there was nothing.

I did not get into the fancy high schools of my peers. I went instead to my neighborhood public school, where my mother had gone before me. I received no help and my rebel self wanted none. I had my smarts and the classes were not challenging. They sucked and I hated it all except for ninth grade English Honors.

Mr. Davis squeezed a few more reads out of me–I remember being particularly engrossed by Green Mansions. He had us watch Cocteau’s La Belle et la Bete, which made a lasting visual impression on me though I could not read the subtitles. He also kept alive for a little while longer the pleasure I took in writing–I’d thankfully taught myself to touch-type the year before on my mom’s manual typewriter. For his class I typed up the last story I would write for a long time. It was about two girls who’d run away. They sat smoking in the McDonald’s on Powell Street. Only one had a pang of regret for the childhood lost and the certainty she’d never go back. I believe that was my last A until college.

Some paltry years of learning flew by, with little school attendance and much teenage debauchery. I cut classes and smoked cigarettes in a café down the street with my best friend–the best friend I still have and the only good take away from that school other than Honors English. I still fancied myself intelligent, a writer. I think I even sometimes dreamed of getting a doctorate someday.

But words and faces were slipping from me: wandering the used bookshop with my friends meant faking it. Looking in used record shops meant looking for recognizable covers with large print. Watching TV meant pretending to see what was going on if it were more than a few feet from me. I took it all in as shame and anger and nursed it with booze and candy.

Doctored newspaper clipping of Tony Randall handing RFB&D Achievement Award to GodinWhen I finally dropped out of high school, it was in order to move on to City College. High School was not working. Finally I got help. Finally I learned about an organization called Recording for the Blind and Dyslexic from whom I would receive an achievement award upon my college graduation some years down the line, handed to me in a fancy ceremony in NYC by Tony Randall. Now RFB&D is called Learning Ally and students don’t have to wait for their digital downloads–blind kids are so lucky these days!–but back in the pre-digital stone age, they sent clunky blue boxes of recorded books on tape cassettes via snail mail.

The first book I remember listening to on the plastic companion cassette player was 1984, the aborted read from years earlier. I was completely hooked and listened to it over the course of a night. The best part about reading by listening is that you do not have to worry about your eyes getting tired.

But those little blue boxes were limited. It takes a long time to have people read books onto tape and to process them. It took time for them to arrive in the mail, a delay of one to three weeks. So that sometimes, by the time I received them, I’d forgotten what prompted me to order them. I could not borrow books from friends and I could not often even get ahold of those they were reading, but at least I could read some. Eating chips or smoking while listening to novels was my great escape.

It was wonderful to have access to books again, but there was shame in those blue boxes, shame in listening to books with my ears instead of reading with my eyes. I hid them away from my friends as much as possible.

Although I still listen to books, having them come to me in a digital file that I listen to in a ubiquitous and perfectly quotidian iPhone has changed everything. The shame is gone, or nearly so. There are so many books available to me through blind organizations such as Bookshare, or through universally available sources such as Project Gutenberg and Kindle, that I can get ahold of most everything I want to read quickly and easily. Others I can scan. In fact, I have so many books on my phone that it has, I’m afraid, made me a little more deficient in attention than I once was, but I’ll take the downside with the many upsides of being able to be current with my intellectual interests. And also able to keep up with what’s going on in the world’s intellectual meanderings, such as they are.

This time, when the call to read 1984 shot around the internet, I was able to download and start reading it immediately. Naturally I’m horrified and darkly amused by the ludicrous behavior of this president and his lackeys with their “alternative facts,” but in some ways I’m more concerned about the hypocrisy of so many of my peers who seem already to have forgotten the jokes and apathy that led up to the election. It is trendy to bash this sad sack in the White House but unthinkable to question one’s own culpability.

Honestly, I’ve shied away from the news since the new presidency. An avid listener to NPR since the Gulf War in 1990, last fall found me angry at my radio for the first time for taking Trump seriously on the one hand, and as just an impossible joke on the other. That so many people I knew felt mostly apathy before the election and have turned fanatical since also feels like a betrayal on the order of 1984 itself. “‘The only evidence is inside my own mind, and I don’t know with any certainty that any other human being shares my memories.'”

The connections between 1984 and the current state of affairs in politics that put the 68-year-old novel at the top of Amazon’s Bestseller list is obvious, but it ought to be recognized as complicated, as our hero Winston Smith is complicated. If Trump being in the white house suggests the regime of Big Brother, I think we ought to allow for the possibility that we are like the very flawed Winston who can in one breath cling to his humanity as the only weapon against the Party:

“‘If you can feel that staying human is worthwhile, even when it can’t have any result whatever, you’ve beaten them.'”

And in the next throw away that humanity in the thoughtless acceptance of rebelling:

“‘You are prepared to cheat, to forge, to blackmail, to corrupt the minds of children, to distribute habit-forming drugs, to encourage prostitution, to disseminate venereal diseases–to do anything which is likely to cause demoralisation and weaken the power of the Party?’

‘Yes.’

‘If, for example, it would somehow serve our interests to throw sulphuric acid in a child’s face–are you prepared to do that?’

‘Yes.'”

These words will come back to haunt Winston in the Ministry of Love even before the final betrayal, suggesting an irony that in the very act of rebelling he steps that much closer to those he is rebelling against, towards their destructive utilitarian philosophy that deems the most heinous acts worthy if they further the cause. To lose one’s humanity in the face of fear and anger is too easy and more dangerous if left unrecognized.

 

*This is essay 6 of #52essays2017, written with all four senses and remembered sight. Read my previous essay Ylang-ylang: Calming the Panic of Love & Memory here*

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*