February 01, 2005.
For years I didn't think it was anything serious. Then I found out I was going blind. While there's plenty that I miss, my new life offers unexpected gifts.
Consider: I'm a young man enjoying myself at a cocktail party. I discover my glass is empty. The crowd--or rather that portion of it I can see with the vision I haven't yet understood is restricted--parts, providing access to the bar. I start through this open space.
There follows a sound similar to a melon being struck by a heavy object as an unseen coffee table deals me a clean blow across the leg. Luckily, I've taken only a few steps, so my forward motion doesn't throw me over the table, scattering glasses, ashtrays, and bowls of nuts.
Only a few guests have witnessed my near fall. They watch my recovery--the search for an empty glass that has rolled under a sofa, the fight to control tears of pain--with the grace that the civilized reserve for those who can't seem to hold their liquor.
Later, my hostess appears as I stand near the edge of the assemblage. She looks at me expectantly. Does she want an explanation? Her cheerful expression gives way to somber reflection before she turns from me petulantly. A friend sidles over and says, "I think she was miffed that you didn't try her homemade canap s."
"What canap s?"
"The ones on her tray."
"The one she was carrying."
"But I didn't see it."
God only knows how many plates of hors d'oeuvres rested unacknowledged below my line of vision while I chattered away to the person offering them. Or worse, the hands outstretched to shake but ignored.
All this went on for nearly a decade before I discovered I was partially blind.
Why didn't I see an ophthalmologist? I did. I had my eyes examined frequently. Doctors told me I had a little astigmatism--nothing serious. But as I left their offices, often knocking over a stack of magazines, I wondered.
The fact is, I was seeing as clearly as most normally sighted people; I was simply seeing less. It was a long time before anyone tested my peripheral vision.
My problem, as I was eventually told in my late twenties, is retinitis pigmentosa--or RP--also known as tunnel or gun-barrel vision.
I'm one of the unlucky winners of a recessive-genes sweepstakes. About 100,000 people in the United States have been diagnosed with RP--the object of intensive but as yet unsuccessful research. The disease normally ends in blindness.
A lot has been written about blindness but not much about becoming blind. For me and many others, blindness doesn't happen overnight but over decades. In my case, the passage from diagnosis to nearly complete blindness required some 50 years.
It's estimated that more than 1 million Americans over 40 are blind, and 2.4 million are visually impaired. They can see, but just barely. The condition lies somewhere between a tragedy and a nuisance.
There you are in the morning, standing in your stocking feet, surveying that part of the floor where you know you placed your shoes eight hours before. But now they're gone, vanished in the night. You go into the closet, and after rummaging around for a few minutes you reappear to discover that the reason you didn't see the shoes when you were making the original reconnaissance was because you were too close to them, almost standing in them.
If you drop a dime, you rarely bother to look for it unless it's been fumbled in a phone booth, where the chances of finding it are, I've discovered, at least even. As the visual field narrows, rubbernecking becomes a vital necessity. Your head must be a radar antenna in perpetual motion. When a tennis ball is lost, you don't look at the court as a whole; you scan it in rows as if visually rolling it. When I was still playing the game, it took me a long time to discover that one of the reasons I was losing so often was that my opponents understood my inability to follow high lobs.
Imagine looking for oncoming traffic through a gun barrel at a busy intersection. Show me a man with RP and a stiff neck and I'll show you a man in trouble.
RP is a degeneration of retinal nerves called rods and cones. These are the light sensors that also perceive color. In most cases, the deterioration begins at the outer limits of the retina, gradually working in toward the center. In the process, small clumps of dark brown pigment, called melanin, are deposited. The rods--some 120 million of them, receptors of light and form--located predominantly at the periphery of the retina, usually die first. As the disease progresses, a mixture of rods and cones ceases to function. Finally the cones, controlling the central vision and numbering about 6 million, die.
The cones facilitate color vision and the ability to see fine details. In some forms of RP, central vision disappears in the early stages, so that one has a most peculiar view of things, like looking at a series of picture postcards in which someone has cut holes.
The handshake represents a persistent RP problem that, in my experience, resisted solution.
If I looked a gentleman in the eye when saying hello, as I had been taught to do, my field of vision didn't extend much below the knot in his tie. In Britain, where faces are sometimes longer, I often didn't even get to the tie. I was, therefore, never certain if there was a hand out down there or not. The number of people I insulted unintentionally by ignoring their outstretched palms was probably legion.
One way to learn if someone wants to shake hands is to look and find out. This move usually proved unsatisfactory, because with RP you really have to look. If the person you're greeting has no intention of shaking hands, your effort only makes this fact more obvious. Some people misinterpret your search for their hand, clearly ascribing prurient motives to your deliberate glance.
It took practice, but I found that friends could be trained to wag their hands in my face and then lower them to a socially acceptable greeting level. They also learned to pass the salad to my eyeball.
Despite efforts to keep my narrowed vision scanning the domestic scene, the most familiar noise in my household became the sound of plastic toys being crunched underfoot.
My four children were reasonably good sports. From the time they were toddlers, my wife instructed them to keep favored possessions out of the path of destruction and to dodge their father. When they could only crawl, they were trained to roll out of my way. Our dog continued to bare her teeth--but no longer growled--when she was inadvertently kicked across the kitchen floor.
Life with early RP in my twenties and thirties was a constant visual surprise. I often clonked into low ashtray stands, and I knocked over quite a few of those really big ones placed outside elevators. You wouldn't believe the amount of sand some of them contain.
In the beginning, RP didn't impinge seriously on my professional responsibilities, which made considerable demands upon my vision, as I was associated with film and television production.
At this time, my central vision was adequate. But because of the lack of peripheral vision, I stopped driving, although for many years I still had a license, which I carried for identification. RP and other diseases that severely diminish the field of vision were reasonably common, but at that time no state required a test for darkness adaptation or peripheral vision as part of its driver's examination.
Fortunately, I enjoyed walking. Living in Georgetown, with my office near Dupont Circle, made a morning stroll both possible and pleasant. Nonetheless, I found it convenient to follow people who were likewise swift walkers to assist my navigation down P Street. Two of these were unknowingly helpful--the tall secretary of State Dean Acheson and his neighbor Supreme Court Justice Felix Frankfurter. The two marched along at a rapid but stately pace engaged in animated conversation.
At an earlier stage in my career, I taught college English in Turkey, where electricity was undependable. Making my way home on foot in darkness from evenings on the town proved especially hazardous.
Many years later, a friend from that time remarked, "We had no idea your sight was failing. We thought you'd had too much to drink."
As my professional life matured, so did its dependency on reasonable visual acuity. As a member of the original National Endowment for the Arts staff, I was responsible for financial assistance in the fields of film, television, and radio. During the four years I worked there, I helped organize the American Film Institute.
Soon after the Corporation for Public Broadcasting was created, I joined its staff--first to direct the funding of large national television series and eventually as director of international activities. I established several international public-TV production organizations in Europe, Asia, and Latin America. More than once, I had reason to be thankful that while much of my work depended on an understanding of moving images, most of them appeared on relatively small screens.
The international work took me to many unfamiliar places over nearly 20 years, during which my peripheral vision was narrowing. While I experienced my share of travel hazards, there were no serious mishaps.
Those who have begun to fly in our hectic, security-conscious environment must find it strange that there was a time when air travel was as relaxed and civilized as boarding a train in a small town. Even now--although I rarely travel alone--air travel poses no insuperable problems. The seating in one plane is much like in all the others. If you can't find your way to the bathroom on a plane, your problems may be more serious than blindness.
The deference paid to people who are obviously blind is close to astonishing: Surly waiters become gracious; stony bureaucrats become helpful, even cheerful. Ushers at concerts have moved me closer to the stage, as if I were hearing-impaired.
It's a shameful thought, but one that has more than once leaped to mind recently: What if I had begun to move about the world carrying a long, white stick 40 years ago? I feel confident that age alone wouldn't generate such an outpouring of good will as I've experienced traveling in recent years.
At professional meetings, I tried to find a place near the end of a conference table so I could keep most of the conferees within my visual field.
It's conceivable that my maneuvers didn't go undetected. I recall, some years before my full-time employment ended, a brief confession to a friend, as we were ascending in an elevator, that I was nearly blind but that no one had really noticed. When we reached his floor, he said softly, "That's what you think."
For those with advanced RP, elevators are tricky, since people close at hand--but to the side--are the hardest to see. To figure out whether it's safe to move to the rear of an elevator when it's physically impossible to glance out of the corner of your eye, you're required to turn your whole head, with the result that you discover yourself eyeball to eyeball with some astonished stranger.
A crowd means trouble. Subways, theater lobbies, the final inning of a ball game--any of these circumstances is designed to put the person with normal eyesight into a sweat.
At restaurants, headwaiters give you the high sign and then charge off to heaven knows where, especially in the "romantically" lighted establishments. It's possible for waiters, sidling up to your table while you're looking straight ahead, to remove every plate in front of you without your knowledge or consent. On airplanes, I've had half-eaten meals disappear while I've glanced out the window.
Restrooms, hard to find in the best of circumstances, are often impossible for the person with RP. Most are hidden in the recesses of restaurants, down dark, squeaky corridors between the kitchen and the boiler room, as if the management were ashamed to have them on the premises.
More disconcerting are the people who vanish. The bellman, standing beside you, bends over to examine your luggage when you aren't looking and is suddenly gone. The wine merchant with whom you've been chatting stoops to examine a label in a lower bin while you look away, and you find yourself inexplicably alone in the store.
If your darkness adaptation is poor, every movie you enter is an adventure. You start down the pitch-black aisle, clinging to a faith that at least one seat in the row you've arbitrarily selected must be empty. On many occasions, I demonstrated the untrustworthiness of this conviction by groping over legs and popcorn boxes from one aisle to the other without finding a seat. I often sat on little children. Needless to say, the advantages of wide-screen theaters are lost on those with RP. The regular screen is quite enough.
I always tried to avoid department stores, chiefly for fear of slamming into youngsters darting in and out of the aisles. Actually, I could cope with the children but not their mothers, who advanced upon the scenes of these miniature accidents with menacing expressions.
I eventually gave up trying to provide a rational explanation to people I stumbled into and, on occasion, knocked down. It must have seemed that I wasn't blind, because most people consider blindness simply black or white. By the time I'd assisted some harassed matron to her feet after a sidewalk collision and stammered, "Oh, sorry, bad peripheral vision," I'd usually gotten a shopping bag in the face. So I took to mumbling apologetic noises over my shoulder and moving on.
Another disadvantage of this horse-with-blinders life is the restrictions it imposes on flirting, which is pretty much corner-of-the-eye stuff. What's more, really expert flirting is usually enhanced by dim light. On the other hand, the person with RP can concentrate fully on the person he's talking to. He has little choice.
There have been a number of pleasurable aesthetic compensations for my vision problem. I used to imagine I was looking through a reflex camera, which always held more appeal for me than the gun-barrel or tunnel analogy. Tapestries were beyond my range, or paintings on acres of canvas, but all sorts of scenes, animated and still, could be "panned" effectively. Details of art and architecture usually reveal themselves much more satisfactorily in isolation.
Colorblindness is a late phenomenon in the progression of RP. As an undergraduate, I worked part-time as a guard in an art museum, where I learned to enjoy a wide range of art and artists. When I arrived in Washington in 1955, the subject of my first television production was a Rembrandt retrospective at the National Gallery. In the years that followed, a week rarely passed without a visit to several museums or galleries in Washington and throughout the world. However, as my vision diminished, so did the range of my favorite artists.
Eventually, I gave up museum gluttony--the blockbuster exhibitions and three-hour romps through galleries, attempting to see everything. Instead, I chose one Monet in each place. At London's Courtauld Institute of Art, it was a magnificent still life, spring flowers in a bronze bowl. In the Cleveland Museum, a portrait of Monet's wife walking through the snow clutching a red cape. In Harvard's Fogg Art Museum, a steam engine entering Paris's glass-roofed Gare St. Lazare.
I'd visit these paintings as one would stop by to see an old friend, sitting for a while in their company. In some sense, they were becoming pictures I owned. The museums were looking after them, and that was a great comfort. Curiously, however, I began to think of them as mine.
I can no longer see even the frames of these images now. But their memories are still with me. All I need do is open that part of my mind where they're stored and they emerge, their forms striking, their colors as vivid as ever.
My progress toward functional blindness was so gradual that it was easy to put off following practical suggestions from friends who could observe my loss of vision: Learning Braille seemed too time-consuming. Learning to walk with a white stick seemed a bit fraudulent while I could still see the outline of a tricycle on the sidewalk. Lessons for blind skiers seemed more like a stunt than holding onto a well-loved sport.
For more than a year in the late 1990s, I convinced myself that if I simply concentrated upon what I could see, as contrasted with what was no longer visible, everything would be fine--thus proving the subtleties of denial. That I was now using pens with large felt tips to write a dozen or so words on 81/2-by-11 paper--something I knew James Thurber had done as he lost his sight--seemed "natural" to me.
Two events convinced me I had finally slipped into blindness. The first concerned a 1996 article I wrote about a painting in the Phillips Collection, Renoir's "Luncheon of the Boating Party." In my sighted days, I would frequently visit this painting, marveling at its complexity and the delightful ambiance it seems to exude. Research in the Phillips Collection library had informed me about the identities of the guests at this gathering. I knew the work so well I could describe it blindfolded, you might say.
That was more or less my condition when I wrote the description that was published first in The Washingtonian and then in Reader's Digest. Sometime later, the article won an award and I was invited to a banquet. By this time, I had reluctantly decided it was best to walk with a long white stick. Did I wish to appear as a blind man to accept an award for an article that described a painting in considerable detail? I skipped the event.
Six years later, I hired a mobility-training expert to teach me how to walk correctly with the white stick. After two sessions, I was, despite misgivings about identifying myself as someone sightless, getting the hang of it and feeling more confident. I was, I decided, now part of the "blind community."
Months earlier, I had attempted several times to have the DC government install an audible traffic signal at an intersection near my home. When these efforts met with a lack of response, I contacted the Georgetown Citizens Association, which promised to intervene.
Months later, with more stick-walking under my belt, I was struck by a reckless driver at this same intersection and sent flying in the general direction of a dinner party to which I had been invited. There were several witnesses, so that after all the hospital time, operations, and orthopedic therapy, and once the bills were paid, all I lost was perfect balance and much of the confidence I had gained.
By coincidence, on the day I arrived home from my second leg operation, someone from the citizens association phoned to report that the city had installed the audible crosswalk signal. This experience convinced me that even if I weren't blind, it was time to head for a more bucolic setting. Once my leg was mended, I moved to a weekend home near Middleburg that I had owned for 40 years.
I try to keep up to date on the burgeoning research relating to RP. The Foundation Fighting Blindness, in Owings Mills, distributes valuable information about this and other eye diseases. Research has accelerated in such areas as retinal genetics, cell biology (why the cells die), pharmaceutical therapy, nutritional experimentation, cell transplantation, and electronic implantation.
The recessive gene that governs who inherits RP is unpredictable. Members of my paternal grandfather's generation nearly all became blind--a piece of information my father failed to tell me even after I was diagnosed. He wasn't affected, nor was my only sibling.
RP is known to skip a generation. My middle-aged children have been spared, and my much younger adopted daughter is not at risk. So far the disease hasn't popped up among my four grandchildren. With all the advances in genetic research, predictability remains largely a gambler's game. In any case, "incurable" still seems the operative term here.
Soon after my own diagnosis, I received a letter from what turned out to be the last of my family's earlier RP generation, 90-year-old great-uncle Charlie, a man I hadn't known existed. He sent a long list of his brothers and sisters, the dates of their births, deaths, and when, he said, "they went blind." He explained that he still had a "pinprick of vision," by means of which he had typed the letter. His wife had died, but he had some good friends and was looking to the future cheerfully.
In the succeeding decades, I carried the letter with me to read when self-pity threatened to overtake me. It never failed to lift my spirits.
As I approached blindness, friends were inclined to ask, largely out of frustration, "Just tell me what you can see."
It was hard to provide an explanation. It sometimes depended on the angle of the sun. But most people with reasonably clear vision persist in thinking that blindness is much like what happens when you enter a windowless room and turn off the lights, or, more simply, when you close your eyes. Technical and legal definitions aren't much help.
These days, in my late seventies, I can still see light and shadow and the white of the flowers near the entry to my home. I can saw wood in a standing cradle but, for reasons that must be obvious, no longer use a chain saw. I can't see faces or their expressions but have become more sensitive to how people speak, how they use or misuse language--their "verbal gestures."
Much has been written about whether going blind sharpens the other senses. In my case, I believe it has. My hearing hasn't improved, as my children and grandchildren frequently confirm. I am, however, more aware of what I'm hearing. I allowed bird identification to pass me by until it was too late, but I take pleasure in bird walks using my ears.
For years, I promised myself I would one day become an accomplished juggler. Although this aspiration now seems beyond my range, if not hazardous, I have begun to develop the sense that many blind people experience--the one that tells you you're about to collide with a closed door or one more step and you'll be over the cliff and into the river. This ability isn't magic, of course--simply a skilled concentration on a spatial sense that was there all the time.
To state the obvious, focusing your attention is enhanced by a reduction in distractions. Our lives are full of diversions, more every day, especially the visual variety. Life after television, New Yorker cartoons, and driving a car may be a shock initially, but it can be managed--and more quickly than you'd think. If you throw in, or rather throw out, computer use, you're well on your way toward simplifying your life and multiplying your ability to concentrate.
I've always enjoyed wine. But its subtleties weren't altogether evident until I became blind. I now believe that, like youth, much excellent wine may be largely wasted on the young and the fully sighted. While I would make an inept sommelier, I'm always available for blind tastings of vintage port and classic French Burgundies.
Given the choice, I wouldn't wish to be blind, nor has it ever occurred to me to lend it any sentimental value. Still, the blindness I'm now experiencing, coming upon me nearer the end than the beginning of my life, has posed some complicated and not uninteresting challenges. In some sense, it's as if--in a strictly secular way--I've been born again into a new life that offers both hazards and satisfactions, a life with dozens of new practical problems and more than a few emotional concerns.
Not many people are offered an opportunity to live two lives, or more accurately, have a second one forced upon them. I appear to be one of them. It seems foolish not to make the most of the opportunity.
Although I'm associated with two volunteer organizations that make recordings for the blind as well as provide complicated computer technology, my comprehension of the latter is limited. My single "hands on" experience in learning how to use a computer consisted of a tutor dispatched to my home by a national organization for the blind. At the end of his one-hour lesson--during most of which he ate several sandwiches he had brought with him--he charged me $200. We both agreed that whatever talents I might possess don't lie in this direction.
Reading or listening to news reports on the wonders of "assistive technology," one gets the impression that those lacking sight need only sit in front of a computer and have a little chat. The computer--after learning the vagaries of the user's speech patterns--will relax and answer any questions put to it. Not quite. Like becoming proficient in Braille, I finally decided that by the time I learned to speak in a familiar fashion with my computer, I'd be too old to form the words I wished to use.
On a more practical level, the range of audible material available to people without sight is phenomenal. I now "read" far more than when I was fully sighted--talking books from the Library of Congress, recorded magazines and other periodicals from Washington Volunteer Readers for the Blind, textbooks from Recording for the Blind & Dyslexic, a brilliantly edited anthology of the best current articles drawn from more than a hundred magazines distributed (free) to blind people by Choice Magazine Listening.
The Metropolitan Washington Ear provides the Washington Post, the Wall Street Journal, and much more via telephone--every day of the year. AudioFile magazine follows commercially produced audiocassettes and CDs. The amount, quality, and variety of audio services for the blind are astonishing.
Would I trade all this to watch a black horse galloping across a meadow, one of my favorite Monets, my daughters' eyes, or the Blue Ridge Mountains marching along the western horizon? Of course. But until that opportunity becomes a reality, I'm grateful for what a second life offers.
GRAPHIC: Photographed for The Washingtonian by Paul Fetters; Picture, "Given the choice," the author says, "I wouldn't wish to be blind, nor has it ever occurred to me to lend it any sentimental value." Now in his seventies, he gradually started to lose his vision as a young man. ; Picture, The author can see light and shadow but not people's faces. One thing he's still able to do is use a wood splitter.
End of article.
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