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I was struck and deeply moved by David Wiley’s report in last month’s Scene4 (qv) about losing his eyesight, his capacity to read books. I am grateful to hear about his struggle as I am on a similar path, but far from his wisdom of renunciation. I admire the brief form of his telling us about his acceptance of vision loss and the strong inner vision he gained.
When your eyesight dramatically fades away, there is no one to talk to. People can’t imagine what it is like. Even the most empathic people surrounding you don’t endeavor to understand what is unfathomable. Nobody asks and nobody tells what it is like.
But having heard about Wiley’s six-year struggle to keep reading, I now wonder what it is like for the painter—Wiley the artist, having to work in this endangered space? I think of Beethoven: how he went deaf and still kept composing his extraordinary final sonatas and string quartets. I am fascinated by Wiley’s paintings; their luminosity is so intense that at a single glance I am transported. His colors are as if painted on glass with sunlight shining through. Colors that bring me back to my German youth, the time when I discovered early Kandinsky landscapes with such stark blacks and raspberry reds on fire.
For the past three, four years my failing eyesight had been challenging me every day to adjust, accommodate, mourn, deny, struggle, and invent. I often find myself shaking my head as if I could will the glass splinters of a kaleidoscope to fall back into place and show me a clear, perfect picture of the world. Encouraged by Wiley’s writing, I attempt to ask myself what nobody is asking, and set down a few answers:
What it is like
As a sun-hungry European I used to disdain wearing sun glasses for most of my life because I couldn’t stand darkening the colors I so loved to see in nature. I used to be proud in my youth of being able to stare straight at the sun – something a heroine named Solange in a novel by Montherlant was able to do. Am I punished now for such romantic follies?
Now, when I look through my right eye, the center of whatever I try to see is hidden behind a grey disk of fog—a relatively small disk so far, like a 10-cent piece cut right out of my realm of vision. When I focus slightly to the side of the disk I can make out the object in a fleeting way. I can see the brightness of a star furtively, but the second I focus on it, it’s gone behind the fog, the literal blind spot. The task of accurate seeing is left to my left eye that is in danger of falling prey to the same disaster. I can feel it lurking when I have to blink away floaters that keep veiling my vision or when the good eye seems tired and starts to mysteriously take on a shade of the dimming and greying of the befallen eye.
In my youth I often dreamt of death and dying. In one of these dreams I saw a row of houses in those Kandinsky colors on the left, and from the right, a slow-moving blackness began to eat into the image and swallow it up bit by bit. I knew in the dream that when the entire road of houses with their ravishing beauty had vanished, I would be dead. Should I see this as a premonition?
I will never forget the grave look the Retina expert gave me after the first extensive examination, three years ago: “I am afraid there is nothing I can do for you.” A central part of my seeing nerve was dead. It could be genetics or just age and it could be neither treated nor healed. The only thing to hope for was a slow progression or, with great luck, maintaining the status quo. In any case, I ought to take eye-vitamins, eat inordinate amounts of green vegetables and red and orange fruit, and avoid stress.
In my panic I rushed to the Lighthouse of the Vision Impaired in San Francisco to learn what helpful devices there might be for someone like me. I learned that I was on the lowest level of vision loss and hardly “qualified” for their reading help, but I took in the clumsy magnifiers and technically unsophisticated reading tools for people worse off than me. “We” clearly were under-dogs, a class of citizens with no technical lobby. I was better off with online techno-websites (and even Amazon) offering reading help like light-weight led lights on a head band, extra-bright light bulbs, or magnifier pendants to wear around the neck for shopping.
David Wiley writes: “About six years ago I finally had to give up reading, after a struggle with various lenses, reading devices, and print of all sizes.” I know by now that book reading with these magnifier lenses doesn’t work. All of them have a hot spot, throw their own shadow onto the page, or underperform in other ways. By chance a plumber, fixing a leak under our sink, used a tool that became my temporary salvation. It looks like a light saber, a metal stick with several led lights in a straight row. A bit heavy, this so-called flashlight, but it lights up several lines in a book, so I can read the way kids read pushing a ruler from line to line.
At age four, when I started reading, my right eye was found to be a wandering eye, too weak to hold its position. I still have my first reading glasses from that time: they are the size of my thumb from its tip to the wrist, a sturdy metal frame with round little glasses and bendable legs. Back then, in the suburbs of Berlin, kids didn’t wear glasses; I was the only “Brillenschlange” or “Spectacled cobra” in my class. The eye stopped wandering with the years, but remained my weak eye. Today my left, good eye needs more and more light to make out written words, the numbers I write on a check, the radish I am cutting with a knife, or the needle I try to thread. I have to rely more and more on “flying blind,” i.e. feeling what I can’t see.
I am still confident driving in daylight when I don’t have to search for street signs or house numbers. I notice that my brain is working to compensate for part of my loss: I start out watching a film in a theater or on my home screen and am battling with a slightly unfocused, blurry image. After a while, sometimes up to an hour, the veils seem to depart. A clear, “normal” image is miraculously recomposed on my retina and I have all but forgotten my handicap.
The computer and all the computerized devices that put a strain on human eyes are now my best friends. Back-lit screens with fonts that I can enlarge are my easiest source of reading and allow me to continue my work as a writer and editor. But the excitement of devouring a book throughout the night is a thing of the past. So is the daily pleasure of turning the pages of newspapers and magazines. I get a pang of nostalgia thinking of the Paris days of my youth, when I would sit in a café and pour over the new Officiel des Spectacless, marking the films, art shows, ballets and theater plays I would want to see and perhaps write about that week. Soon going to the opera will be a peine perdue (a vain effort) as I have to use binos to read the supertitles.
Many other pleasures of easy seeing are gone by now, most arresting among them the capacity to flirt —this basic human exchange and communication of the pleasure of seeing. The famous glance across a room of strangers, or the look of a person at a café table near-by are all lost on me as I can’t focus my eyes at a distance. In my splendid isolation the most charming looks I can imagine pass me by unseen, unanswered. Does it matter?
In giving up books, Wiley has found a profound consolation: “…all I have read is a part of who I am, and that is what I must be content with. I have built an edifice of literature for myself, and now I must stop building and live in it…” The same is true, I would say, for life experiences that are now part of the past – but a past that lives on in the unlimited waves and particles of memory. Perhaps for a writer, memory and imagination share a similar color and intensity. I often surprise myself with a rush of gratitude that so much is still possible, so much beauty still visible, so much life still there to live.
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Writings