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*

Resonating With the Visible, genesis of a Poem

I was sewing–I hand-sew, as you can read about in Sewing Blind–and listening to the series of interviews Bill Moyers had with Joseph Campbell in the last year of his life (1987), collectively called The Power of Myth, when I heard Moyers preface his next question with this:

“We talked about the effect of the hunting plain on mythology, this space clearly bounded by a circular horizon with the great dome of heaven above. But what about the people who lived in the dense foliage of the jungle? There’s no dome of the sky, no horizon, no sense of perspective–just trees, trees, trees.”

I paused the interview and continued stitching. Occasionally sewing becomes a kind of active meditation for me. I thought about that phrase “circular horizon with the great dome of heaven above.” It resonated. I allowed the associations to ripple gently on the lake of consciousness. I’m not sure how long before the rings of “circular horizon with the great dome of heaven above” met those of a visual memory of a desert sunrise , but when they did the opening lines of “Never Be Sorry” emerged.

The memory began in the predawn desert of Joshua Tree National Park. My UC Santa Cruz roommates and I had driven down the day before and arrived at night to the campground. I awoke before dawn to a cold so cold that I still compare all colds to that one. Surely it was not actually as cold as some recent winters in NYC, but sleeping on the ground in a flimsy down sleeping bag my feet and hands were painfully frozen, almost burning so that tears started to my eyes. My companions were somehow still sleeping while I stared at the millions of sharp cold stars. Perhaps I could have forgotten my pain if I had been able to pick out constellations, but having lost my central vision when I was in high school, I had never been able to make them out–I could see the stars just as I could see inked letters on a printed page, but without the detail rendered by the fovea, the words and pictures refused me their intelligibility.

So I stared at those frozen chips of light and thought they might enter my heart and freeze my soul, like what happened to the little boy in The Snow Queen. The sleep breathing of my companions assured me I was not alone, but sometimes that is not enough–one yearns in this lonely universe for conscious companions to witness the pain and creeping fear.

The hours or only minutes passed. Perhaps I closed my eyes for a moment. When they reopened, I found a new scene, one that so took my breath away that the cold seemed almost to disappear.

Rolling my eyes around that great expanse of sky–that exalted dome–I saw a pale silver lightening rising up from the horizon, silhouetting the sharp rocks, which appeared heaped into crazy formations as if by an abstract-expressionist deity.

And finally, just above the silver ring of impending sunrise, hung a sliver-moon risen, it seemed, just to complicate the transition from night to day, and create the illusion of a metamorphosis arrested, the dome of night suspended forever in the bowl of rising day.

My poem of sight and blindness would be about the beauty and more than beauty–sublimity–of the visible world. I wanted to celebrate the visible, celebrate my participation in the appreciation of that world from a perspective of one who no longer participates physically in that appreciation, but who, in her mind’s eye via memory and art, still attempts to participate in the glorious materiality of sight.

The poem would resonate with the visible, with ambiguous regret–how can I regret having seen such beauty? How can I not regret, when the having-seen causes a painful desire for more?

The fleeting quality of the visible world had no better analogy than a sight once seen of butterflies falling from the skies in coupling torrents, falling into our hands and into our hair and all around, a frenzy of mating butterflies in an improbable grove of eucalyptus trees. It had been a memory ripe for art picking for many years.

According to the Natural Bridges State Beach website, ” From late fall into winter, the Monarchs form a ‘city in the trees.’ The area’s mild seaside climate and eucalyptus grove provide a safe place for monarchs to roost until spring.”

In my time at UC Santa Cruz, I often brought visiting friends and family to see the monarchs, but never had I seen it like that. Most times I went the weather was not warm enough for them to fly much and they clustered in the trees, wings folded, so that I, with my poor vision, would never have recognized them as butterflies if they’d not been pointed out to me.

The day the butterflies fell from the sky in copulating pairs is so crystalline a memory that I sometimes fear it was a dream. A dream of nature that, as a child, I often experienced as an extension of my waking life–a dream set in a specific and quotidian event or outing–a field trip that really did take place in a verifiable way–but so improbable as to force the memory into the taxonomical mental space of a dream, but nonetheless differing not at all from the memories of autobiographical reality.

As I am writing, I grow more fearful that my mating butterflies memory is not real. For the first time I am trying to situate it in a day, trying to give context–who was I with, for example? We, laughing and stunned, opened our hands to catch them as they fell, but the other hasn’t an identity , just a presence, a guy but not a lover. Sounds rather fishily like a dream, no? And yet I’m positive it happened. And yet I’m disturbed.

I wonder, for the first time, if essaying the story of a poem can destroy its reality? Can a poem even be destroyed in such a way?

Unsure of my answers to the above, I rush on to present my real point: I loved seeing and yet I think being in love with seeing is a danger all seeing mortals face. That to see constantly without a lens, aesthetic or philosophical, or from the perspective of impending blindness, or recovered sight, or religious ecstasy, or even scientific curiosity, is to see without anything but one’s eyes, and thus to render oneself a mere gawker or dumb tourist.

As Campbell puts it in the opening lines of The Power of Myth:

“People say that what we’re all seeking is a meaning for life. I don’t think that’s what we’re really seeking. I think that what we’re seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonances within our own innermost being and reality, so that we actually feel the rapture of being alive .”

And so with this idea of resonance in mind, I will not be disturbed by the possible unreality of the mating butterflies falling from the sky. If it is but a dream vision, its purity as memory speaks to the power of imagination to endow sad inert brown clusters of cold insects hanging from eucalyptus trees in a Santa Cruz grove, with the flight and life-frenzy of mating monarchs in all their sun dappled orange and black magic.

If I held one of these coupling double-creatures in my hand only in my dreams, is it not enough?

Never Be Sorry

 

 

I Will Never Be Sorry

To have seen that jagged desert,

Encircled by horizon,

Topped with that great dome

Of exalted blue heavens above,

Or that lovely cool sliver of a moon.

 

And I will never be sorry

To have seen that ragged face

(that great last love

That blazed so quick)

Or to have loved it

With spit and fire.

 

And I will never be sorry

To have Seen these fucking butterflies–

Literally, fucking butterflies–

Falling from the sky

(It’s hard to fly   when you’re fucking)

So they drop

Into the hand of one

Who will never be sorry she sees them

Drop dancing into the palm of her

And dance till they rocket apart.

 

Up and away

Into that close slab of sky,

Chipped away by these eucalyptuses–

These Eucalypti?

Whatever they are called,

THEY DO NOT BELONG HERE:

Australian trees on a Santa Cruz

Draw the monarchs from

God only knows where.

 

This is an impossible grove

With its accessible walks

And its stupid visitors hut–

Winds might yet blow it all away.

 

And on that ocean

Sit those natural bridges,

Carved out by a thousand years of pounding,

Had I like them

Energy enough   and time

I would never, never,

Never be sorry.

 

*This revised version of “Never Be Sorry” was published at Quail Bell Magazine. Here also is the original version, with photographic visionscape by Todd Jackson…

 

A Flame’s Progress, Greek Easter 1981

We arrived late as always, so that there was no place to sit, though there’s not a whole lot of sitting in Greek Orthodox churches. Standing in our coats, clutching our unlit candles, we crowded in with the others who, like us, came to church but once or twice a year. I was between my mom and my Thea Yvonne and on the other side of her was my Uncle Art–there’s a strange convention in our family to call our Aunts by the Greek thea but our uncles by the American uncle. I don’t know why, but it pretty much sums up the willy-nilly Greek/American distribution of traditions on my mother’s side of the family. And if there ever was a perfect blend of these two strains of holidaymaking, it was for me Easter, when I got the best of both worlds.

 

I waited impatiently for the music that heralded the candle lighting, and when it happened, the church erupted in song. “Christos Anesti!” (“Christ has risen!”) was sung over and over again. Wikipedia tells me that this is called the Paschal troparion, originally written in Koine (common) Greek, the original language of the New Testament, but translated into countless languages and sung in Eastern Orthodox Churches all over the world, as witnessed by this YouTube video.

 

The gold ceiling caught fire as the candlelight passed from the priest to the ancient and impossibly shriveled old ladies who sat at the front of the church swaddled in black, like ornery newborns. I could not see them, but knew they were there because they were always there, coming early for the good seats and staying late against their doom.

 

The stone church glowed like an oven when the first candle of my relatives was lit. My mother nudged me to hold my candle with its protective cup to catch dripping wax, straight. This I did with great anticipation, mouthing the words of Greek I wished fervently I knew, a desire, which would be forgotten by morning when American Easter baskets of chocolate bunnies and sugar flowers would drown out the yearning for the culture in which I feebly swam. But for now, it was the dark ritual that sparked passion in my young heart, and it was coming to its wonderful climax.

 

Being in the back meant that although we were among the last to arrive and receive the flame, we were the first to leave. Once all candles were lit, and a final round of Christos Anesti sung inside the church, the doors were flung open and we took our fire and our song and our ancient ritual with its pagan roots outside.

 

We circled the Ascension Cathedral thrice and, so embedded is the celebration of light in the human imagination, that even my profoundly secular heart (which loves all dark and mysterious things without attributing the magic of life to any great being) find this ritual memory moving to the point of tears. Who can deny the beauty inspired by belief? There is horror inspired by belief also, but this essay is a celebration of the beautiful.

 

Atop the Oakland hill, the streetlights twinkled below. Our flames’ progress was not the only light in the darkness, as our forefathers may easily have imagined on some Hellenic hill in centuries past, but still, as my eyes were just beginning to show signs of the degenerative disease that would eventually mar distinctions between day and night, I easily imagined ours to be the only light in that dark bosom of midnight. What ten year old could fail to appreciate the delicious transgression of wakefulness? Or to relish the solemn joy that was the reenactment of the ultimate Christian paradox: in order to live, one must die.

 

Perhaps some of the congregation reentered the church to finish out the service, and there is some part of me now that yearns to return with them into that quiet place, filled with the recent echoes and rustles of some hundred souls. But that was not then my yearning. In the back seat of my uncle’s Cadillac, I stared at my candle and chattered about how beautiful it all was while already my mind was turning to dinner with its own set of light-hearted rituals.

 

The table spread out like an Easter parade with silver candelabras waiting to embrace our still-lit candles set next to baskets with glittery grass and shining colored eggs. We did not then do the red eggs as is traditional in Eastern Orthodoxy, though, in recent years, my mother has placed the incongruous blood-red eggs (with all their gruesome metaphorics) into American Easter baskets. But when I was little, she wanted me to enjoy the sweetness of the American dyes as if to preserve my innocence, although, even then, the veil had begun to fray.

A mysterious dystrophy was happening in my retinas and I’d already been to one or two ophthalmologists that year. It was precisely those doctors who, confronting their own ignorance and inability to explain why their lenses could not correct my vision, opened a great and never-to-be-closed chasm in my child’s psyche: I was made suddenly and irrevocably aware of the limits of human understanding. It was in 1981 that I learned how the smell of ignorance permeates all–never mind the bright white robes of clean and apparent knowledge.

 

 

It is also in my memory that at that year’s Easter dinner I had my first taste of watered wine and felt very grown up. I was the youngest and only girl at the table. The only other kids there were two of Thea Yvonne’s three sons, who were quite a bit older than I. Thea Yvonne had yearned for a girl child that she might pamper with all the sweet things her own childhood in the Greek mountain town before and during World War II had not offered her and her sisters, and I was happy to step in. Her beautiful house offered me eyefuls of objects to gawk at and love, as well as a storehouse of visual memories to treasure, now that I can no longer see:

 

A collection of Madame Alexander dolls dressed in costumes from around the world, and Art Deco prints with elongated women in peacock dresses whose skirts are attached to gloved hands. Pristine and plush white rugs led out to a dark pool–one made of stone that puts aqua fakery to shame. And, beyond the pool, Thea Yvonne’s rose garden taught me to love outrageous blooms with august names like Queen Elizabeth and Sterling Silver that resembled not at all the upright uniformity found in shops. One blossom presents itself to my mind’s eye in a cinematic close-up: a pale rose with a dark center, its ivory petals rimmed with wine.

 

I am suddenly tempted to Google “Easter egg fight,” to know if it is American or Greek, though I suspect the latter for two reasons: First, Greeks tend to be a competitive lot, and second, because the tabletop tournament requires some Greek be spoken. But I will not. I prefer to remain blissfully ignorant and pretend my family invented the game.

 

I believe my mother conducted the Easter egg fight that year, but that could be because she was my first combatant, sitting next to me as she was. “Pick your eggs!” Everyone reached into the baskets and chose, very carefully, the egg they believed would beat the rest. I chose a purple one. It felt strong and solid as a stone.

“Ok, pointy end to pointy end,” said my mother. “You want to hit first?” “Uh-huh,” I said and poised my egg above hers.

“Christos anesti,” I said and my mother responded, “Alithos anesti.”

“Oh!” we both cried. I was victorious.

“Turn your egg around.” This time she hit me, but again I prevailed.

 

I took my winner egg to my cousin, whom I may have had a little crush on, as I did most boys since I didn’t have many of the male persuasion in my life after my parents divorced and I started at an all-girl school. But I beat him too, on this my favorite and most special Easter ever. And on it went “Christos anesti–Christ has risen!” Alithos anesti–Indeed he has!” BONK Smash CRACK I went around the table to the eggs that remained uncrushed and crushed them all!

I was so proud. My champion was placed back into the basket with great solemnity.

 

Then I selected another egg to be sacrificed to my dinner–sliced and generously sprinkled with salt and pepper and eaten on top of buttered pita bread–what we called the sweet Easter bread that required much love and warming blankets to encourage its multiple risings. I was not much of a meat eater back then, so I can’t tell you about the leg of lamb, but my current, wiser self knows it was delicious and regrets her youthful folly!

 

Eventually my eyes grew droopy. There was no more postponing the inevitable. I was tucked into bed. First to sleep, first to rise, I woke up to a new house–one transformed into an Easter Bunny’s playground, and enjoyed an Easter egg hunt made for one, traipsing around the house finding little nests of candies with clues to the next treasure written on cards decorated with baby chicks.

 

Because my eye disease stole my central vision first, it would not be long before I could not read such cards, but on Greek Easter 1981, the year I was ten and balancing on the cusp between seeing the world through a bright child’s lens and darkly through that of an adult, I was filled with excitement at finding what had been created just for me. I ran upstairs to show my mother each piece of candy and trinket I found, as if she had never seen it before, as if we’d never either of us seen anything like it before. Or would ever again.

 

*First published at Quail Bell Magazine*