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Public officials have an obligation to do more for people with vision loss

Video
Experience what it's like to have Advanced Macular Degeneration. Children are playing in a play lot. As the video progresses, the children are distorted and the bright colors and strong contrast in the children's clothes fade becoming less focused. In this simulation, how a person with AMD sees the world is presented graphically. As the disease progresses the area of central vision deteriorates. The gradual destruction of light sensitive cells continues until large areas are totally lost. Peripheral vision remains, but the ability to clearly see straight ahead is gradually lost.

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By Sheila Solomon Klass
Special to The Washington Post
Monday, October 4, 2010; 6:03 PM

Each day on waking, as I pad barefoot to the door to get the morning newspaper, I wonder: Will I be able to read the headlines when I pick it up? Yes, the headlines.

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Headlines, after all, are large and set in bold type. That's what it has come down to. Oh, sure, with my magnifier I can do it. But I never carry my magnifier to the door; that would be cheating on the daily test I set for myself.

I'm legally blind because of macular degeneration, and I have glaucoma.

What the normal eye can see from 200 feet, I can see from only 20 feet or less. I can read normal-size print in a good strong light, if I hold the book close to my face. One and a half million Americans share the disability of legal blindness with me. Additionally, I'm an 82-year-old widow in lace-up orthopedic shoes who spends a lot of time on the subway happily going about her business.

Until five years ago, I had no very serious laments about my body, which has served me well and serves me still.

But now . . . my eyes are going. Macular degeneration is the leading cause of vision loss in my age group, and my vision is practically gone. What worse punishment is there for an English teacher, for a writer of fiction whose major sport is reading, for a person who worships the printed word?

I was a nearsighted kid, and I've worn glasses my whole life. I put them on in the morning and took them off when I went to bed. I was "Four Eyes" to the bullies in the P.S. 16 schoolyard in Brooklyn, but those glasses enabled me to see clearly and read all I liked, and that was what mattered.

During my late adolescence, my mother began to point out that my marital possibilities were being destroyed by my eyeglasses. She nagged me constantly to go without them. I pointed out that if I obeyed her, I would surely be hit by an automobile or a trolley car.

So I grew up wearing glasses, and, miraculously, I married a nice man many years after my mother had given up hope. During the decades that followed, my prescription changed and my lenses needed strengthening, but I saw and I read and I wrote with ease.

Then came middle age, bringing with it the clouding blight of glaucoma in both eyes, with all its terrors. For years I dosed myself with various eyedrops several times a day to avoid a damaging buildup of internal eye pressure. Then I got lucky. The miracle of laser surgery worked for me. There was eye damage, but it was under control.

In my 70s, I slowly began to be aware of what I believed was the increasingly shoddy paper and ink in books and magazines. It seemed to me that many of the published works I read had fading print. I was surprised at how difficult reading became, even in very good light.

It turned out that macular degeneration, in a vicious assault on my left retina, had joined the arrested glaucoma and was devastating that eye. And it turned out that there's very little that can be done about this cruel disease. Recently macular degeneration has began to spread into my "good" eye, which, had been pretty poor anyway because of worsening myopia and my age.

These days on waking, before I go to the door for the newspaper and the headline test, I don my reading glasses and stand in front of a diagnostic Amsler grid taped to my refrigerator.

The grid is a postcard-size rectangle of horizontal and vertical lines with a small dot at its center. I close first one eye, then the other. If the lines aren't wavy or broken, my eye disease hasn't ravaged me further during the night.

Now I need to notice everything around me with enormous care and attention.

Signs are no longer what they seem. Numbers deceive me: "6" and "8" are indistinguishable, as are "5" and "3."

The light-and-dark contrast on street signs in New York City, where I live, vanishes completely at dusk, and on cloudy days the "WALK" and "DON'T WALK" signs at crosswalks disappear. Steep and dangerous subway stairs are badly lit, and subway elevators are often out of order.

Many shops and splendid buildings don't wear addresses, and house numbers are often tiny or nonexistent. Broken pavements make walking on the city's streets a life-threatening venture. There is much to be noticed when one barely sees.

In daylight I function easily enough. I shop, I explore, I go to work. That's right, to work. I'm an English professor emerita at the only community college in Manhattan, a remarkable contemporary melting pot of higher education.

After dark, though, I'm almost sightless. New York turns into a maze of threatening shadows amid dim streetlights.

My doctors scrupulously monitor my disease, and they try to buoy my spirits. "You have the good kind of macular degeneration," my ophthalmologist says. "Dry." He's not being ironic. He really means it.

"Even if the macular degeneration gets worse, you'll probably see enough to be able to take care of yourself," concludes my retina specialist. I wait for the dilating drops he gave me to stop distorting the world so I can find my way home. "It won't be as dark as it is for some. You'll manage," he says.

Often in past years I've thought about others like me who devoted their lives to celebrating the intricacies and wonders of the world in words. Some of them had never seen that world at all, while others saw it only until they were plunged into darkness: Homer; John Milton; Benito Pérez Galdós, the so-called Spanish Tolstoy; Jorge Luis Borges; James Joyce; Helen Keller; James Thurber - all blind or blinded writers.

How splendidly brave they were! Brilliant, yes, but how brave!

To be a blind writer is to live in an an invented world. While the writing hours of my life are all spent in such imagined places, I do always return to the visible world around me, which has been my touchstone. How ever shall I manage if it disappears?

And it is disappearing. It's quite strange for me to go to the playground with my grandchildren and hover so close to them every single minute for fear of losing sight of them. It's also strange to sit at a festive dinner table with my family and gaze on blurry faces.

It's strange to be at the opera and hear but only vaguely see. I've been going to the outdoor Shakespeare every summer for years, but at last year's "Twelfth Night" in Central Park, I saw only Malvolio's yellow stockings, and not his cross-garters.

I hear the city still, although I often don't see its changes. And I blunder regularly. The other night at dinner, I poured a large amount of coarse salt onto my pasta, mistaking it for grated cheese.

So I'm keenly aware that life will surely get stranger for me, even though it will not be "as dark as it is for some."

Modern medicine has done the best that it can to repair me, and I'm truly grateful.

Now I want my city - all cities - to do the best they can for me and other citizens.

For those of us who flourish amid motley crowds and metropolitan excitement, the city offers mobility and a vibrant life. We who are elderly, we who don't see so well, we who can't walk so quickly - we also have something to offer. We're going, going . . . but not gone. We "old olds," who live and vote in American cities in such large numbers, need cities to be welcoming places for those who aren't keen of sight or fleet-footed, and for those who are headed the way we are going.

But to put our talents and skills and experiences to use, we need urban policies that take us into account.

I've voted in every election for which I was eligible. Through my magnifying glass, I do my best to read about all the issues, great and small. But I'm still waiting for the candidates and policymakers who look past the cliches and barriers of ageism and see the white-haired lady on the subway.

I want them to recognize her, and to want her to be part of the city.

I want candidates and policymakers who are willing to look at the world through legally blind eyes and see what needs to be fixed. They would welcome the growing population of "old olds." They would recognize that we need top-notch health care - but also safe, accessible public transportation so that we can keep our doctor appointments, proper urban lighting and clean, well-maintained streets. And might I also mention safe, accessible public restrooms and functional public drinking fountains?

Furthermore, I want a consistent code for businesses and houses that designates a minimum size for address numbers.

In sum, I want to be able to locate places and walk and ride and breathe safely in my own city.

The right candidates will gain my vote and my ardent support, and I promise to use my voice, including my voice on the page, to recruit others. My peers and I might not walk quickly or see well, but there are more and more of us "old olds" heading for the polls each year - and we will not stay away!

health-science@washpost.com

Klass is the author of 17 novels and two memoirs. This essay was excerpted from September's edition of Health Affairs magazine; it can be read in full at www.healthaffairs.org .



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