CERKL Gene: My Newly Identified Eye Disease Is Not an Eye Disease, Essay 10 of #52essays2017

Last week I visited my ophthalmologist and learned that my blindness is caused by a mutation to the CERKL (pronounced like circle) gene, which, it turns out, is oddly not specific to my damaged retinas. At Genecards.org I read, “CERKL (Ceramide Kinase Like) is a Protein Coding gene.” And on Wikipedia I learn that “ceramides are a family of waxy, lipid molecules,” and that kinase is an enzyme, but I’m still not sure what this all means. I’m the wrong kind of doctor!

About a year ago I had a first round of genetic testing that came back negative. They had looked for more common (though still             rare) degenerative diseases of the retina like retinitis pigmentosa (RP) and Stargardt disease, and had shown that in the world of rare eye diseases, I have a doozey. Then a few months ago Dr. Tsang, my ophthalmologist at Columbia Medical Center, urged me to test again as great leaps had been made in the swiftness of identifying rare gene mutations. What might have taken two years to find in the last test, could now give results in a few months. That is exactly what happened. In a few months, I learned that my recessive mutation takes place on the CERKL gene.

When I was a kid, I was diagnosed with retinitis pigmentosa (RP), though, through the years of degeneration, my symptoms hardly presented like a typical case. The symptoms of RP are generally a loss of night vision and far peripheral vision that gradually constricts through the decades, leaving the sufferer with tunnel vision that grows ever narrower. This means that people with RP can often read normal print long after they have need for a mobility aid, like a cane or dog.

Back when I was in my twenties and still living in San Francisco, I went to an RP support group and heard a man tell how he’d been waiting for the train in a downtown BART station reading a newspaper with his guide dog, when someone came up and told him, “You don’t look blind.” To appease the stranger, the storyteller put on his dark glasses. We in the group laughed very hard. (In such groups, a good amount of time is spent talking about how silly sighted people are.)

However, that man’s experience was not mine, and I felt a little envious. I wished I could still read normal print and run around with a cute guide dog. Instead, my weird version of retinal degeneration went in another direction. I lost some peripheral vision, and experienced night blindness–both of which signify damage to the rods, which make up the majority of our peripheral vision and sense light and movement. However, I also had a tiny chink removed from my macula–which is preserved until late stages in typical RP. Specifically my fovea, the central point of vision that consists of densely packed cones, which are the retinal cells that detect color and detail, blew out early on, making it impossible for me to read normal print. I could still make out large print for a long time if I placed it slightly off-center focus. Hence, I began to look askew at things in order to see them.

For me, it was only a few years between when I could not read the writing on the black board from the back of the class to when I could no longer read normal print. And yet, in many practical ways, I still looked and functioned perfectly normally. I could walk around without aid no problem, and that created a lot of confusion and shame.

As a person with a degenerative eye disease, I have experienced pretty much every notch on the sight blindness continuum, from normally sighted to nearly totally blind. In fact the vast majority of the world’s sight-impaired population is visually impaired, not totally blind. According to the World Health Organization ” 285 million people are estimated to be visually impaired worldwide: 39 million are blind and 246 have low vision.” However, these statistics tell us very little about what the individuals in either category see.

Doctors don’t tend to ask what I see anymore. An assistant may ask if I can see their hand waving in front of my face, but I have to tell them that I can still see the ceiling light if I place it in my periphery just so. In addition, they certainly never ask what has come to replace my lack of vision. Do they know that my visionscape presents a blast of fireworks–probably the explosive last gasps of the photoreceptors in my destroyed retinas–or the constant hallucinations curtesy Charles Bonnet Syndrome? Or that, when I’m tired I see less, or when drunk I see more, but when hungover less. When I am in familiar environments, my brain fills in information and I see more–just like the blind spot is filled in normal vision, so that, especially when I had more vision, I saw dramatically less when I was in unfamiliar places. For more on how the brain fills in vision, read Richard Gregory‘s classic Eye and Brain: The Psychology of Seeing.

Through my twenties and thirties my eye disease progressed in a haphazard way, but I still told people that I had RP, until recently, when I thought it seemed better, though more clunky, to describe my disease as a cone rod dystrophy, which explains the severity of the central vision loss at an early age.

It is a strange aspect of my slow march towards blindness that in the many years I spent as a visually impaired person, people often finished a conversation about my eye disease with the punctuation, “Is there a cure?” or “I’m sure they’ll find a cure.” Now that I’m basically a blind person, no one says anything about curing me. Of course, this could also be because I’m older. In any case, the irony is that now that I am older and blinder, there actually are glimmers of cures on the horizon.

From gene therapy to nanotechnology the possibilities of cure or cyborg-like augmentation are numerous and the darlings of the media. If you don’t believe me, check out the September 2016 National Geographic’s cover story “The End of Blindness.”

For about ten years, I did not have anything to do with eye doctors. It seemed to me useless. They simply confirmed the problem, but could offer no solutions. Then I started to get the feeling that things might be changing. Stem cell approaches were beginning to be a reality, even in the US, where stem cell research had been squelched by Bush and will likely be squelched by this Hydra in the White House, if the prolife heads prevail.

But now, with my CERKL gene identified as the culprit, I learn that curing my eye disease may have greater possibilities than stem cell therapy. In a CUMC blog post about his research Dr. Tsang is quoted as saying,

“Although gene therapy has shown promise in RP, it is complicated by the fact that defects in 67 genes have been linked to the disorder, and each genetic defect would require a different therapy. … Our study shows that precision metabolic reprogramming can improve the survival and function of affected rods and cones in at least one type of RP. Since many, if not most, forms of the disorder have the same metabolic error; precision reprogramming could conceivably be applied to a wide range of RP patients.”

RP patients as well as those like me who have one of the 200 mutations associated with other retinal cell degeneration have reason to be optimistic in this approach, since the rarity of the underlying cause will be less of a factor. In terms of research funding and focus, this is very good news for people like me who have odd mutations.

Hence my eye disease is a symptom that may be treated with drug therapy that may relate to many other kinds of problems. Dr. Tsang told me in the office that it may be treated with drugs someday, rather than surgery. In the article on CUMC’s blog he noted , “‘Further studies are needed to explore the exciting possibility that precision metabolic reprogramming may be used to treat other forms of RP and retinal degeneration.'”

The article mentions that some potentially therapeutic drugs may already exist to treat other conditions such as “enzyme blockers called thiomyristoyl peptides, a common plant pigment known as quercetin, and vitexin, a substance derived from the English Hawthorn tree.”

I personally really like the idea that hawthorn, a tree sacred to fairies, might someday provide me a cure!

For now, Dr. Tsang is recommending daily exercise, which has shown to be effective in slowing down the rate of degeneration in mice with RP. As one of Dr. Tsang’s assistants put it to me in an email:

“The article about SIRT6 found that, in mice with a similar retinal degeneration, better sugar metabolism (in the form of lactate) for the retina cells helped delay the degeneration. This is still in the animal/research phase of research so there is no specific recommendation we can provide based on this study right now. At this time we do not have a way to deliver lactate directly to the retina. However, daily exercise increases lactate transiently and was shown to be helpful for mice with a retinal degeneration. Since daily exercise is beneficial for many things anyways, we recommend it to our patients as perhaps it may also help their retinas too!”

Since exercise might have some impact on my eye disease, I thought I’d ask about diet, and Dr. Tsang recommended three servings of fish. I clarified, “A week right? Not a day?” He and his assistant laughed. “Then you smell like fish,” he said, which begs the question, would I be willing to smell like fish for a chance to see again?

The thought that all my terrible living has actually exacerbated my disease is unsettling. My whole life I’ve felt a victim of genetics, and now it turns out I may have accelerated my blindness by feeding the mutation with booze and youthful drug adventures, indifferent eating habits and not enough exercise. On the one hand it is good to know that I may be able to have an impact on how I see for the rest of my life and on the other, I am saddened at the thought that too much has been already lost, and that suddenly I find myself to be an author of that loss.

*This is Essay 10 of #52essays2017. Read my previous essay “Laurel Wreaths: A Brief Hydrosol Encounter” here*

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Laurel Wreaths: A Brief Hydrosol Encounter, Essay 9 of #52essays2017

Two glossy green Laurel leavesThis brief and admittedly drunken hydrosol encounter with laurel (Laurus nobilis) was inspired by Cathy Skipper’s Hydrosols class at the School for Aromatic Studies.

Last week I ordered my little arsenal of sensory indulgences from Aromatics International because they were the only (recommended) online aromatherapy shop I could find that was not sold out of this delicious hydrosol. It was my first time ordering from them, but I’ll definitely order from them again.

I must confess that I’m a slut when it comes to buying essential oils and hydrosols. It is my firm belief that not all companies can provide all your needs, they must have specialties, and expertise, and so as with clothes, groceries, booze, and pretty much everything else, I have no interest in shopping one place exclusively. My impression is that in the world of aromatics, it is best to steer clear of those companies that tell you they can fulfill all your needs, i.e. beware the multi-level marketing when it comes to aromatics, and probably everything else too.

Ok, enough PSA for today. Here’s my hydrosol encounter with one of my all-time favorite trees, the laurel.

For people who like the Earth and are sending away for healthy/botanical friendly stuff, there can be some guilt. It’s the opposite of buying local, but in New York City, it’s oddly difficult to get a hold of very many of the rapidly growing assortment of hydrosols that exist, though there is a lovely little aromatherapy shop in the West Village, Enfleurage, that has a marvelous selection of essential oils, less in the way of hydrosols. The point being that I appreciate minimal packaging, and Aromatics International did a great job–no extra crap in the way of brochures and pamphlets, no unnecessary wrapping–just biodegradable popcorn, pet bottles and a bit of packing tape around the tightly screwed tops. Perfect.

I ordered four products: three hydrosols to help me out with a couple recipes for my upcoming HONEYPOT article, and an impulse purchase of a new-to-me oil, Marula (Sclerocarya birrea), which is apparently great for the skin.

I opened the box without my boyfriend Alabaster being home, to find four identical (to the touch) 4-ounce bottles, but was unconcerned, because (blindness be damned) the ears and nose were all that was required in identifying these aromatic liquids.

First I shook the bottles and determined the oil from the waters by the sound. I could tell from the lower and slower sound flow, which was the marula, and smelled to confirm. Marula () is a nut oil, that is a carrier oil with little smell, but it is apparently very good for wrinkles… I’ll let you know…

Pink Pelargonium capitatum flowersThen I smelled the first of the hydrosols. The citrus note told me at once that this was the citrus geranium (Pelargonium capitatum), one of the rose geraniums used in perfumery, but distinctly more lemony than the Pelargonium graveolens, which I also purchased for comparison in martinis and on my face.

Last came the laurel (Laurus nobilis), and my nose did a little dance. How I love this noble leaf!

“Upon smelling,” I wrote in my first impression notes, “the top note is so surprisingly floral or fruity,–a fruit that is almost tropical, a fruit that I can almost name but cannot–that, with the distinctive bay leaf underpinnings, the sensation is almost orgasmic. Upon tasting, the fruity disappears and the whole pungent, spicy leaf smashes intensely on the tongue.”

Anyway, I added a bit of water, and then, without too much ado, some vodka… and then some ice, and well, the taste was pretty amazing. Granted I started out with a whole tablespoon of hydrosol, which is a lot, quite a bit more than a normal person or cocktail will desire. What can I say? This is a debauched hydrosol encounter.

“Ok, just added a touch more vodka to my now iced laurel and find that this is unbelievable; the peppery notes of the laurel sparkle. I want Alabaster to experience this taste with me, but he is cooking and filling the room with other smells. While I wait for him to try, and try not to drink the whole damn thing, I will remind myself of the mythical, poetical laurel…”

Apollo seated with lyre wearing laurel wreath.Apollo, Greek god of music, poetry and light, prophecy and excellence of all kinds, crowned his head, and the heads of winners, with laurel wreaths. To this very day we have poet laureates, and Nobel laureates and may we ourselves be crowned with laurels, but may we never rest on them.

I can, at this very moment, testify to the intoxicating effects of Laurus nobilis, but I will not claim knowledge of the Pythian priestess. Whether she delivered her prophecies in well-wrought verse or unintelligible gibberish I cannot say, but if I, dear reader, were able to deliver words of wisdom beyond the obvious “Know thyself,” I would say, “drink of the noble laurel, and your eyes will be opened.”

 

*This is a drunken essay 9 of #52essays2017, written with all four senses and remembered sight. Read my previous essay “Mapping & Mixing the Senses at the Mall of America” here*

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Mapping & Mixing the Senses at the Mall of America, Essay 8 of #52essays2017

This is my answer to the Mall of America Writer-in-Residence application question “What would you like to write about during your writer residency? ” which doubles as my #52essays2017, written with all four senses and remembered sight, offering this busy week of state and house-hopping.

Youthful Godin in a Paris Disney teacup

I will write about beauty with all four senses and remembered sight. What is beautiful to the nose, the ear, the tongue, fingertips, and yes the eyeballs too? How do the senses fare in one of the most stimulating places on Earth?

I will explore the nooks and crannies of taste , smell, touch, hearing and sight, collecting organic material to run through my synesthetic still. For the harder perceivable clumps I’ll have to use my wordsmith’s hammer and anvil of insight to pound out the contours of desire and satisfaction.

Denis Diderot, the philosopher, encyclopedist and art critic who in his last moments on Earth reached for the cherry compote, that is, died wanting more deliciousness, wrote, “I consider that of all the senses the eye was the most superficial, the ear the proudest, smell the most voluptuous, taste the profoundest and touch the most philosophical.”

In our daily musings at our desk, my laptop and I will test these hypotheses, and formulate new ones: If a pink flower is distilled into a bottle of perfume will my soul turn that hue upon my spritzing myself with it? Can a song-inspired designer make a dress that can teach me to dance? Can I ride choo choo trains to work and back again without hearing joy or sorrow? Can I write a love-letter to the tongues of universal taste? Will I touch my girlhood in a looking glass while wearing leather, or satin, or feathers, or ruby slippers, or in a tank of waving sea anemone? Can I enter my father’s boyhood, or my mother’s, more truthfully through taste, touch, or smell? Is there a perfect sight? A perfect sound? A perfect smell? Is asking for perfect sensations too ridiculous to entertain? What is the smell of laughter? Can you taste a smile? Can you buy lovely? Can you sell hunger? Where in the MOA can you find natural beauty? Unconventional beauty? Ugly beauty? Metaphorical beauty? Beauty for all the senses and the spirit too?

I once was sighted, but now I’m blind. Having lived on almost every notch of the sight -blindness continuum, I will comment about what was seen, what is to be seen and what might yet be seen with a little imagination and artistic cross-sensual translating.

Helen Keller wrote that our senses tell us very little without the spark of imagination: “Without imagination what a poor thing my world would be! My garden would be a silent patch of earth strewn with sticks of a variety of shapes and smells. But when the eye of my mind is opened to its beauty, the bare ground brightens beneath my feet, and the hedge-row bursts into leaf, and the rose-tree shakes its fragrance everywhere. I know how budding trees look, and I enter into the amorous joy of the mating birds, and this is the miracle of imagination.”

In my ramblings as the Mall of America Spectator, I will carve a path with Moses (my trusty white cane) leading others through the promised land of gratification. I will work the Mall’s sense organs, aesthetic appreciation, metaphysical gleemings, from the mind’s eye out. Together we will map the contours of ineffable, ineluctable, and sensational beauty. Together we will anatomize the feel of beautification, skin smoothers and brighteners, sleek lines of suits and stiletto heels, scents that attract men, attract women, woo the nostrils, and tickle the visual cortex. Like true adventurers, we will explore plush Furniture music, intricate lace movement, luxurious leather goods and thrills. We will hunt for the scented candle that reminds you of your professor’s library, of your baby’s cowlicked head, of your secret garden. We will hunt for the sound of mirrored astonishment, in the maze or in my sunglasses. We will do archaeological digs for glinting rocks, in nature stores and at jewelry counters. We will make a study of dolls’ dresses and dressing like dolls, as well as more sophisticated drone-toys and the taste of rose cocktail fizzes, truffle oil and high-piled hotdogs.

I promise to faithfully scribble down the gasps and whispers, truthfully set down the pleasures, curiosities and explorations, honestly pen the trends and heart-wishes of the Mall of America.

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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*

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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*

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Ylang-Ylang: Calming the Panic of Love & Memory, Essay 5 of #52essays2017

Cananga odorata illustrated in Francisco Manuel Blanco's Flora de Filipinas. 1800-1803?. Public domain from Wikipedia.When I first read about ylang-ylang (Cananga odorata), I’d no smell associations, but I was intrigued because it is included in so many aphrodisiac blends. It is both relaxing and stimulating, which is a fabulous combination when you’re trying to get it on.

Then I smelled ylang-ylang out of a labeled essential oil bottle, and I realized I’d smelled it before. I was transported to the sexy time in my life when I could walk around unaided–no white cane, no guide dog, no boyfriend. I’d just arrived in New York City and I could see well enough to walk around without mobility help, but not well enough to read signs or see into shops.

I was a grad student at NYU and was visually impaired, but if you saw me walking around campus, you would not know that I was not like everybody else, unless of course you knew me and therefore knew not to be offended that I did not recognize you. If you recognized me from a class but did not know that I was visually impaired, you likely thought my lack of acknowledgement meant I was a snob. Anyway, in those days of wandering around enjoying the feel of walking if not the visuals that many peripatetics associate with the activity, I regularly got slapped pleasantly in the face by a smell that emanated from a large and bustling shop–perhaps a hair salon–that sat on the corner of Waverly and Sixth.

Each time I walked by, I would hesitate and want to enter, wondering what it was because that smell reminded me of an earlier scent memory. I’d coveted the brilliantly colored hair on the box of Salon Barbie, and her dyes–red, purple and black–smelled of what I now suspect to have been some kind of synthetic ylang-ylang. The smell stuck with me though any fun I may have derived from the oddly punk rock toy has completely evaporated.

That said, I was never a very olfactory-oriented person but rather a visual one. I can still see the photograph on the box of that damn doll with its perfect purple hair quite plainly in my mind’s eye. I still feel like a visual person, but I’ve not got the sensory inlets going anymore, only the imagination and the hallucinations.

The deprivation has finally led me to appreciate smell, and recently I find that I get a little depressed if I don’t have any around–pleasant ones I mean–those that I can control, or at least name and manipulate. The fakey-wakey smell of my cheap-ass Dove “cucumber” shampoo does not count.

Though I cannot, at present, afford to have everything be blessed by natural fragrances, I fantasize about a future wherein I will have complete control of my smellscape. I underline the word fantasize here, because though I long for the day when I can indulge in all the aromas I read about and lust after, having complete control over what enters the nose is of course impossible, as smells permeate all, and each person has their own. Sadly my smellscape could not be vacuum-sealed unless I had no desire to go out or have sex.

Godin brushing hair reflected in antique vanity mirror

Speaking of sex, let’s return to the heady floral scent of the tropics.Ylang-ylang, long admired in its native islands of the Philippines, Malaysia and Indonesia for its good effects on libido, skin and hair, grew commonplace in far-away England as Macassar Oil, which was so popular as a styling product for men, that doilies were soon required to protect the backs of upholstered furniture. As mentioned in Aroma Victoriana, the men and women of 19th century England were as mixed up and contradictory as any society, and so it is likely the sensual fragrance of ylang-ylang, reminiscent of bodies barely clad and warmed by the sun, was likely more than one kind of bother in the buttoned-up drawing rooms.

But ylang-ylang is more than an aphrodisiac, or rather, its effects on the libido result from its ability to relax and regulate extreme emotions and to calm the physical and mental effects of anxiety. As Peter Holmes remarks in Aromatica:

” In dealing deftly with intense emotions, Ylang ylang bestows a relaxing, softening, harmonizing and lightening grace over the energetic Heart – a function that is expressed in Chinese medicine as ‘nourishing Heart Blood.’ Its ability to transform dark negativity into lightness and positivity is perhaps unique. In opening us to the lightness of being, Ylang ylang is clearly a remedy for the soul as much as for the body.”

Jar of Yes Organic Ylang-ylang rose night cream on antique vanityLiving now as a vagabond, my essential oil collection has dwindled. Knowing this, my best friend and owner of Yes Organic Boutique, gave me a beautiful cream made with ylang-ylang and rose essential oils. I slather it on at night to smooth the wrinkles of face and psyche. The calming effects of ylang-ylang have been of particular interest to the latter, which has recently been subject to panic attacks.

I was a panic-prone person in my twenties, so I can’t blame it all on aging and blindness, but these two aspects combined with the recent casting off, has allowed the sleeping giant to rise. The first panic struck on the plane from NYC to Denver and hit me again in the bus from Colorado Springs to Albuquerque. In lesser forms, it hits me in each new house, where even the simplest cupboard or table can present a problem–one can be mired in a cul-de-sac no bigger than a public bathroom stall when one cannot see. As mentioned in Winter Wonder Maze, I’m terrible at being blind, and worse when I feel people’s eyes on me. So, putting myself in the position of being in the households of others, with their crap acting as constant reminders of my lack of freedom and control seems an odd place to be. Stupid maybe.

And yet. And yet, who is truly free? My dear friends with house and car payments, children and spouses may be free to walk about the cabin, but they are not completely free either. Freedom comes in degrees, independence a balancing act.

My mother wonders why I do not get another guide dog. “You used to care so much for your independence,” she opines. She does not know how hard-fought and lonely it was. She does not feel the memory weight of its superficiality, tethered as it was to anger and the need for a love that I wielded like a club.

She also does not believe that in these strange blind cul-de-sacs there is another freedom, and the only one that may yet transcend this mortal coil. I will, like all of you, grow feeble, if I am permitted to live, and this body will be but a sack of memories of a time when the body was free. But if the mind is free, there is movement in the soul, right? And, just as those ancients used scent to communicate with the gods, I use smell to transport me out of this body that fears each vase-clad armoire as if it were an on-coming bus, this body that shuffles about like that of a very old person, slowly, carefully, with embarrassing trepidation.

If my worth were measured in my tiny steps taken , my life, like Prufrock’s measured out in coffee spoons, I would surely collapse in a heap of self-loathing. But if I follow the scent of the Tropics to a place where I can learn and learn and continue to learn, I do not feel old or blind or feeble. Not useless. On the pleasant smelling days, I believe myself to be an organism still sucking life and pleasure, in and out.

The trick is to follow the nose up and up into the rarified air of the unforeseeable future.

The trick is not to panic.

The trick is to keep breathing, nostrils flared as if smelling a flower for the very first time.

 

*This is essay 5 of #52essays2017, written with all four senses and remembered sight. Read my previous essay Hannibal: From Acting to Aromatics here*

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