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*

Helen Keller on Smell, The Fallen Angel

[“SMELL, THE FALLEN ANGEL” is Chapter SIX of The World I Live In (originally published in 1908), a magnificent book that tells of sensations beyond seeing and hearing. It is also the book from which I took the heartbreaking preface that ends Helen Keller Tries To Tell You Her Story. This has been gently edited for apparent scanning errors and the odd British spellings Americanized. 

 

Helen Keller, with full dark hair and wearing a long dark dress, her face in partial profile, sits in a simple wooden chair. A locket hangs from a slender chain around her neck; in her hands is a magnolia, its large white flower surrounded by dark leaves.
Helen Keller, Los Angeles Times, 1920.

FOR some inexplicable reason the sense of smell does not hold the high position it deserves among its sisters. There is something of the fallen angel about it. When it woos us with woodland scents and beguiles us with the fragrance of lovely gardens, it is admitted frankly to our discourse. But when it gives us warning of something noxious in our vicinity, it is treated as if the demon had got the upper hand of the angel, and is relegated to outer darkness, punished for its faithful service. It is most difficult to keep the true significance of words when one discusses the prejudices of mankind, and I find it hard to give an account of odor-perceptions which shall be at once dignified and truthful.

In my experience smell is most important, and I find that there is high authority for the nobility of the sense which we have neglected and disparaged. It is recorded that the Lord commanded that incense be burnt before him continually with a sweet savor. I doubt if there is any sensation arising from sight more delightful than the odors which filter through sun-warmed, wind-tossed branches, or the tide of scents which swells, subsides, rises again wave on wave, filling the wide world with invisible sweetness. A whiff of the universe makes us dream of worlds we have never seen, recalls in a flash entire epochs of our dearest experience. I never smell daisies without living over again the ecstatic mornings that my teacher and I spent wandering in the fields, while I learned new words and the names of things. Smell is a potent wizard that transports us across a thousand miles and all the years we have lived. The odor of fruits wafts me to my Southern home, to my childish frolics in the peach orchard. Other odors, instantaneous and fleeting, cause my heart to dilate joyously or contract with remembered grief. Even as I think of smells, my nose is full of scents that start awake sweet memories of summers gone and ripening grain fields far away.

The faintest whiff from a meadow where the new-mown hay lies in the hot sun displaces the here and the now. I am back again in the old red barn. My little friends and I are playing in the haymow. A huge mow it is, packed with crisp, sweet hay, from the top of which the smallest child can reach the straining rafters. In their stalls beneath are the farm animals. Here is Jerry, unresponsive, unbeautiful Jerry, crunching his oats like a true pessimist, resolved to find his feed not good–at least not so good as it ought to be. Again I touch Brownie, eager, grateful little Brownie, ready to leave the juiciest fodder for a pat, straining his beautiful, slender neck for a caress. Nearby stands Lady Belle, with sweet, moist mouth, lazily extracting the sealed-up cordial from timothy and clover, and dreaming of deep June pastures and murmurous streams.

The sense of smell has told me of a coming storm hours before there was any sign of it visible. I notice first a throb of expectancy, a slight quiver, a concentration in my nostrils. As the storm draws nearer, my nostrils dilate the better to receive the flood of earth-odors which seem to multiply and extend, until I feel the splash of rain against my cheek. As the tempest departs, receding farther and farther, the odors fade, become fainter and fainter, and die away beyond the bar of space.

I know by smell the kind of house we enter. I have recognized an old-fashioned country house because it has several layers of odors, left by a succession of families, of plants, perfumes, and draperies.

In the evening quiet there are fewer vibrations than in the daytime, and then I rely more largely upon smell. The sulfuric scent of a match tells me that the lamps are being lighted. Later I note the wavering trail of odor that flits about and disappears. It is the curfew signal; the lights are out for the night.

Out of doors I am aware by smell and touch of the ground we tread and the places we pass. Sometimes, when there is no wind, the odors are so grouped that I know the character of the country, and can place a hayfield, a country store, a garden, a barn, a grove of pines, a farmhouse with the windows open.

The other day I went to walk toward a familiar wood. Suddenly a disturbing odor made me pause in dismay. Then followed a peculiar, measured jar, followed by dull, heavy thunder. I understood the odor and the jar only too well. The trees were being cut down. We climbed the stone wall to the left. It borders the wood which I have loved so long that it seems to be my peculiar possession. But to-day an unfamiliar rush of air and an unwonted outburst of sun told me that my tree friends were gone. The place was empty, like a deserted dwelling. I stretched out my hand. Where once stood the steadfast pines, great, beautiful, sweet, my hand touched raw, moist stumps. All about lay broken branches, like the antlers of stricken deer. The fragrant, piled-up sawdust swirled and tumbled about me. An unreasoning resentment flashed through me at this ruthless destruction of the beauty that I love. But there is no anger, no resentment in nature. The air is equally charged with the odors of life and of destruction, for death equally with growth forever ministers to all-conquering life. The sun shines as ever, and the winds riot through the newly opened spaces. I know that a new forest will spring where the old one stood, as beautiful, as beneficent.

Touch sensations are permanent and definite. Odors deviate and are fugitive, changing in their shades, degrees, and location. There is something else in odor which gives me a sense of distance. I should call it horizon–the line where odor and fancy meet at the farthest limit of scent.

Smell gives me more idea than touch or taste of the manner in which sight and hearing probably discharge their functions. Touch seems to reside in the object touched, because there is a contact of surfaces. In smell there is no notion of relievo [relief], and odor seems to reside not in the object smelt, but in the organ. Since I smell a tree at a distance, it is comprehensible to me that a person sees it without touching it. I am not puzzled over the fact that he receives it as an image on his retina without relievo, since my smell perceives the tree as a thin sphere with no fullness or content. By themselves, odors suggest nothing. I must learn by association to judge from them of distance, of place, and of the actions or the surroundings which are the usual occasions for them, just as I am told people judge from color, light, and sound.

 

From exhalations I learn much about people. I often know the work they are engaged in. The odors of wood, iron, paint, and drugs cling to the garments of those that work in them. Thus I can distinguish the carpenter from the ironworker, the artist from the mason or the chemist. When a person passes quickly from one place to another I get a scent impression of where he has been–the kitchen, the garden, or the sick-room. I gain pleasurable ideas of freshness and good taste from the odors of soap, toilet water, clean garments, woolen and silk stuffs, and gloves.

I have not, indeed, the all-knowing scent of the hound or the wild animal. None but the halt and the blind need fear my skill in pursuit; for there are other things besides water, stale trails, confusing cross tracks to put me at fault. Nevertheless, human odors are as varied and capable of recognition as hands and faces. The dear odors of those I love are so definite, so unmistakable, that nothing can quite obliterate them. If many years should elapse before I saw an intimate friend again, I think I should recognize his odor instantly in the heart of Africa, as promptly as would my brother that barks.

Once, long ago, in a crowded railway station, a lady kissed me as she hurried by. I had not touched even her dress. But she left a scent with her kiss which gave me a glimpse of her. The years are many since she kissed me. Yet her odor is fresh in my memory.

It is difficult to put into words the thing itself, the elusive person-odor. There seems to be no adequate vocabulary of smells, and I must fall back on approximate phrase and metaphor.

Some people have a vague, unsubstantial odor that floats about, mocking every effort to identify it. It is the will-o’-the-wisp of my olfactive experience. Sometimes I meet one who lacks a distinctive person-scent, and I seldom find such a one lively or entertaining. On the other hand, one who has a pungent odor often possesses great vitality, energy, and vigor of mind.

Masculine exhalations are as a rule stronger, more vivid, more widely differentiated than those of women. In the odor of young men there is something elemental, as of fire, storm, and salt sea. It pulsates with buoyancy and desire. It suggests all things strong and beautiful and joyous, and gives me a sense of physical happiness. I wonder if others observe that all infants have the same scent–pure, simple, undecipherable as their dormant personality. It is not until the age of six or seven that they begin to have perceptible individual odors. These develop and mature along with their mental and bodily powers.

 

What I have written about smell, especially person-smell, will perhaps be regarded as the abnormal sentiment of one who can have no idea of the “world of reality and beauty which the eye perceives.” There are people who are color-blind, people who are tone-deaf. Most people are smell-blind-and-deaf. We should not condemn a musical composition on the testimony of an ear which cannot distinguish one chord from another, or judge a picture by the verdict of a color-blind critic. The sensations of smell which cheer, inform, and broaden my life are not less pleasant merely because some critic who treads the wide, bright pathway of the eye has not cultivated his olfactive sense. Without the shy, fugitive, often unobserved sensations and the certainties which taste, smell, and touch give me, I should be obliged to take my conception of the universe wholly from others. I should lack the alchemy by which I now infuse into my world light, color, and the Protean spark. The sensuous reality which interthreads and supports all the gropings of my imagination would be shattered. The solid earth would melt from under my feet and disperse itself in space. The objects dear to my hands would become formless, dead things, and I should walk among them as among invisible ghosts.