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"The sheer beauty of Kuusisto's writing creates a miraculous planet; a swirl of sensation and nuanced perception, ecstasy, terror and love. Here a soul on a bicycle is propelled by pure desire. And here we, in turn, are propelled toward a new vision."
—Andrea Barrett, author of Ship Fever
BLINDNESS IS OFTEN perceived by the sighted as an either/or condition: one sees or does not see. But often a blind person experiences a series of veils: I stare at the world through smeared and broken windowpanes. Ahead of me the shapes and colors suggest the sails of Tristan's ship or an elephant's ear floating in air, though in reality it is a middle-aged man in a London Fog raincoat that billows behind him in the April wind. He is like the great dead Greeks in Homer's descriptions of the underworld. In the heliographic distortions of sunlight or dusk, everyone I meet is crossing Charon's river. People shimmer like beehives.
I was born in the Exeter, New Hampshire, hospital three months prematurely, in March 1955. My identical twin brother lived exactly one day. Taken together we weighed five pounds, but with the death of my twin, my own weight dropped. My chances of survival were thought to be minimal; I was incubated and given oxygen. Within a week my weight stabilized, and then I began to grow.
Many children born prematurely in the fifties and early sixties suffer from visual impairments. The condition (which still exists, though it is less common today) is known as the "retinopathy of prematurity." The tiny blood vessels of the retinas are formed in the last trimester of pregnancy, so if a child is born prematurely, the retinas are often underdeveloped. In the fifties incubators were overly oxygenated, which further complicated the retinopathy--babies incubated with too much oxygen would routinely go blind. In my case the retinas were scarred.
Nystagmus is an additional complication of "ROP." My eyes dart uncontrollably and often appear to be jumping in my head. Such "darting eyes" make it nearly impossible to focus. I was also born with strabismus, or crossed eyes, and though later surgery would try to correct this, the operation was only an aesthetic exercise--I never gained muscle control over my eyes.
20/200 is the definition of legal blindness. What a normal person sees from a distance of two hundred feet, the blind person will see from twenty. In childhood my best visual correction was 20/200 in my left eye. With that eye I had enough muscle control to place my nose on a piece of paper and perhaps make out something if the print was dark and large. Up until the age of forty I could do this for a half hour at a time. Later, inoperable cataracts made this impossible. From the beginning my right eye couldn't read and would hop like a starling in a hedge, recording glimpses of color at the tip of my nose.
The sensorium of the blind who possess some marginal vision is by turns magical and disturbing. There is nothing in front of you, nothing behind. Now there is a shadow in the shape of a man who has appeared from the mist. How lovely and terrible this is! It's a mad, holy vision, the repeated appearance and disappearance of the physical world.
My sister once spent some time in meditation at a Hindu ashram in the south of Germany and came home having seen the very air atomize into a dazzling whirlwind of living particles. Hearing her story, I thought of walking alone at dawn, the morning light like stained glass. I can see these things as I walk to the comer store for milk. It's like living inside an immense abstract painting. Jackson Pollock's drip canvas Blue Poles comes to mind, a tidal wash, an enormous, animate cloud filled with light. This is glacial seeing, like lying on your back in an ice cave and staring up at the cobalt sun.
The beauty is of course conditional. Many who have minimal sight are photophobic, like myself, and daylight is painful. I can't go outdoors without wearing the darkest possible glasses. When I enter a shop or restaurant, I am totally blind. When my eyes have adjusted, I still cannot read a menu or catch the eye of a waiter. My eyes dance in a private, rising field of silver threads, teeming greens, roses, and smoke.
Such waltzing is not easy. Raised to know I was blind but taught to disavow it, I grew bent over like the dry tinder grass. I couldn't stand up proudly, nor could I retreat. I reflected my mother's complex bravery and denial and marched everywhere at dizzying speeds without a cane. Still, I remained ashamed of my blind self, that blackened dolmen. The very words blind and blindness were scarcely to be spoken around me. I would see to this by my exemplary performance. My mother would avoid the word, relegating it to the province of cancer.
Given my first pair of glasses at the age of three, I carried them in secret to the garden and buried them under the wide leaves of a rhubarb plant. A year later the glasses were discovered by the family that was subletting our house while my parents and I traveled to Scandinavia. They couldn't imagine how these tiny gold-framed spectacles had been interred in the earth.
Once when I was nine or ten, my sister Carol, who is four years younger than I am, came home from school in a state of inspiration. She had read a book in class about a young woman who went blind and then found her life renewed with the help of a guide dog. Carol recalls how I threw snow at her as she pretended to be blind with the help of our family's golden retriever. I ran behind her, stinging her with ice.
Who would choose to be blind?
* * *
I WOULD CONQUER space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle--with nothing more than adrenaline for assurance.
How do you ride a bicycle when you can't see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances--the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.
Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it's a shadow, a hole in sunlight, and pedal straight through.
Here's another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I'm alive in the wild carrot leaf!
I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I've been seen. Nothing with this boy must be amiss! He belongs on the street!
Now I'm on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I've barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.
And then there are shadows surrounding me. Please let these blurs not be children!
Yes! The shadows are trees.
Now I touch the glasses, heft them back to my face. They are heavy as padlocks.
Quickly I raise the bicycle and straighten it.
In a mathematical world there are so many factors: Were my years of cycling an actuarial gift? Who else was on the road as I was cycling in the opposite direction? Did I stop on the true day of terminus, the day when my numbers were up?
I cycled from the age of ten until I was thirty. During my last decade it was occasional, more furtive, a headless activity like taking drugs. By my twenties, I knew it was injurious. As a child, I had only that graven need to resemble.
Of course my mother gave me this bicycle in the first place, a gift made from her guilt. I love her for the gift of speed and remain angry because of it. Mine was a boyhood of thrills and nausea.
* * *
MY FAMILY SETS sail for Scandinavia aboard the SS Stockholm in 1958. We travel to Helsinki so my father, a professor of government at the University of New Hampshire, can study the cold war through the medium of Finnish politics. I am three years old, and I've already buried my first pair of glasses.
Aboard the Stockholm I elude my mother by running wildly. At that age I am already the dervish of labyrinths. No adult can confine me to a stateroom. On "D" deck I become the mascot of a sailors' card game. The red tiles of the lower decks and the white tunics of the sailors swirl like the walls of a funhouse. How do I avoid falling down a gangway? I recall the dazzling machinery of the engine room as a storm of color.
In Helsinki I lean close to the gray, birdlike women with ether eyes who ride the trams. Each has survived the wartime starvation, and now, in the darkest city on earth, they are riding home with their satchels, which had taken all day to fill; the stores were ill-stocked and the lines were long. I remember their almost feral attention to the trolley's windows at twilight. As a small boy, I climb ever closer to them, their strangeness imprinting on me an indelible image of hardship.
One day, climbing the stairs with my father in our apartment building, we meet a severe old woman who speaks to my father in Finland's brand of Swedish. I am acutely aware that I am the object of scrutiny. She points with a cane:
"Tsk tsk," she says, "barna-blind--blind child."
Her voice echoes on the stairs, "barna-blind"--blind from birth. I was not quite sighted; I wished to never be blind. Didn't this old crone know that I'd buried my first pair of glasses under the rhubarb? This will be a nearly lifelong puzzle for me: Am I not a sighted boy? Am I not attempting bravely to see? What must I do?
I know that I don't belong anywhere, so I become the spindrift of ocean liners, streetcars, and stairwells. I must have driven my mother insane. That year I survived on banana ice cream cones, which I extorted my parents to buy from the streetcorner dairy stands. I could see their effulgent red and blue awnings and quickly learned to make vocal my need for ice cream in loud Finnish so as to inspire my parents with the stares of the crowds.
Delicate, skinny, inordinately active, I was sharpening a sixth sense that fostered the impression in my parents and almost everyone else that I could see far better than I really could. Such acting requires a capacious memory; in the gauzy nets of pastel colors where I lived, every inch of terrain had to be acutely remembered. In the heart of every blooming and buzzing confusion, I found a signpost, something to guide me back along my untutored path. Twenty-one years later, when I returned to Helsinki with my own Fulbright grant, I found the door of our old apartment building by following the dropped bread crumbs of the blind child's choreography.
Even today I live in the "customs house" between the land of the blind and those who possess some minor capacity to see. It's a transitory place, its foundation shifting, its promise of stasis always suspect. There are moments when I see better than others since conditions of light are peremptory and loaded with impact. The whims of architects have enormous power over my experience of vision: a postmodern shopping mall with its cantilevered floors and mirrored walls--all lit by indirect lighting and high-intensity bulbs--can reduce my momentum. The darkness of restaurants and bars tightens my chest. I edge along without poise, feeling the sudden reverberations of alarm that come with not seeing. In a room designed for urbane and sexy people, I feel the boyhood panic, imagining myself an old man holding objects close to his face. How does one become inured to unpredictable moments of helplessness? I turn a comer into direct sunlight, and without warning I'm the boy grasping at tremendous air.
I remember Helsinki's open-air fish market, where I ran through the crowds of winter shoppers. The green and gold of vegetables and fruits, and the icy chill of the butchers' stalls where the walls were bloodred--all of it drew me on and on. I could run in abandon bouncing off strangers, wild to elude my mother and absorb the colors. The market became my customs house between the ocean of blindness and the land of seeing.
* * *
BACK IN THE States, my mother must fight with the local district to gain my admission to an ordinary first-grade classroom. I am a legally blind child, and it is the era of Kennedy. It will be another thirty years before people with disabilities are guaranteed their civil rights in the United States.
I am emphatically told not to mix. In some cases this comes from the parents, who think I might break during ordinary play.
"The kids are playing rough now, so why don't you come over here with us?"
I sit in a lawn chair while my mother's friends take in the sun and the fragrance of suntan lotion mixes with their cigarettes.
Mrs. O'Daly lets me sip her coffee, although there is some joking about stunting growth.
"You don't want to play with them, they're nasty," one mother opines, with a stream of smoke.
"You're better off right here!"
There is laughter at this. It's true: I'm better off hiding behind the lawn chair. But I can hear their children through the trees, the shrieks and exaggerations.
"Why don't you tell them to play with me?" For this, there is no answer, only the hasty decision to change a baby or "start on supper."
In our town there are no discernible men or women with disabilities, with the exception of World War II veterans. A disabled child is without a category: one simply doesn't see them. My mother, in turn, believes that I should live like other children--at least as much as possible. It's a decision that must make her as lonely as her son. There are no books about blind children or how to bring them up, no associations of parents or support materials, at least not in rural New Hampshire. Instead there are assumptions: Blindness is a profound misfortune, a calamity really, for ordinary life can't accommodate it. For my parents this puzzle will be even harder because my vision loss is a form of "legal blindness"--a confusing phrase that means that I can see fractionally, though not enough to truly see. Not enough to drive or operate machinery or read an ordinary book.
So I am blind in a bittersweet way: I see like a person who looks through a kaleidoscope; my impressions of the world are at once beautiful and largely useless.
The one thing my parents know for certain is that blindness is stigmatized. Fearing for my financial security, my father tries to buy a life insurance policy in my name, only to find that blindness is an impediment. That same year my mother decides to enroll me in public school instead of an institution for the blind and finds both consternation and disapproval from school and staff officials.
So on a hot August day we are visited by a social worker. We live at the end of a forested dead-end road in Durham, a road of screaming blue jays and orange daylilies. A black sedan stops in front of our house, and a heavy woman climbs out with the help of the driver. Then she unfolds her white cane and makes her way to our door. My mother is roused both by a horror of blindness and incipient hostility for bureaucracy. Who are they to say her son is blind? He mustn't be seen in the company of a blind social worker--the stigma might be impossible to erase.
I'm sent to the cellar. There I find a piano, a toy chest, a variety of amusements. The cellar doesn't feel like a banishment, but I know something's up. I stay at the top of the stairs, my ear to the door.
The muffled sound of adults in dispute is a terrible thing for a child. Beyond the cellar door I hear their gloomy voices as they argue about where I should be in the world. That argument has never ended for me: on that day over thirty-six years ago, both were approximately correct. The social worker says I am too blind for the public schools of the day. My mother counters that I wouldn't have the same kind of social experience at a blind institute. "Those places teach kids how to cane chairs," she says. The blind woman insists that I won't learn braille in a public school, won't learn to use a white cane. My mother cannot accept that these are real drawbacks--she takes this as further proof that I should be enrolled in the public school system. Hers is an urgent and primitive choice, one that today would be unnecessary as blind children regularly attend public schools and receive cane, travel, and braille lessons at the same time.
Blind though I am, my mother is hell-bent on emphasizing my mall window of vision. I am going to be dimly sighted and "normal." According to her, I will damn well ride a bike and go sledding, and do whatever the hell else ordinary children do. To her the prospect of the white cane denotes the world of the invalid.
But I need that cane. I am about to begin an impossible contest with the sighted world, a display that today is known as "passing" or more correctly, "trying to pass."
It's hard to explain how, as a child, or even as a grown man, I have been so proficient at hurtling forward without breaking my neck. To those watching, it must seem as if I see. My blind friend Peter, who has never seen anything but darkness, moves the same way. I suppose this plummeting through the world involves the same inexplicable faith known to skydivers. Fast blind people have exceptional memories and superior spatial orientation. By the age of five, I was a dynamo. Wanting to see me run, my mother saw me run and guessed that I must be seeing more than I really could. And so I landed like the bee who sees poorly but understands destination by motion and light and temperature.
I turn and climb down the stairs, remembering to avoid the canning jars and Sears catalogs. I'm headed for the ancient mahogany upright piano. It's music I'm after; I'm already entranced by the keys. In my grandmother's attic I'd turned the handle of a Victrola and discovered Caruso, a voice like milk and iodine pouring from inside a paper horn. In our own house I listen to my father's Tchaikovsky records, running my fingertips over the cloth facing of the electric speaker.
When the social worker leaves, my mother does not come to find me. Instead she goes to her own room and sleeps with the curtains drawn.
I stay at the piano for hours.
After supper I go outside and shout in the empty road in the hope that some kids will play with me.
Later, alone in the woods, wet elbowed and wet kneed, I catch my trousers on a sunken rock, lean into the ground, press my chin into the moss. The things I see are an alembic of distilled colors and shapes.
"Heaven," says Robert Frost "gives its glimpses only to those / Not in position to look too close."
I push my face into the fireweed.
Posted February 4, 2014
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