What I (Don't) See

driving with macular degeneration
For the longest time, I didn’t understand what was going on with me
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Running down the street in the pre-dawn gray, I focus on a stout, squat man all in green in the distance. The guy is perfectly still, which means he’s probably not a guy, but a garbage can. A tall, skinny dude turns out to be a telephone pole loitering at a bus stop. I’ve got the vision of a dinosaur: if it moves, it’s probably alive. Next, I spot a lump of roadkill, or is it a discarded black plastic bag? No, a puddle. I confuse 2D objects with 3D, like my daughter when she was an infant and tried to pluck a flower off her floral print quilt. Even in the best natural light, it’s like I’m peering out of a fine, black screen. Glare washes out nearly everything in view.

I’ve been living with macular degeneration for the last twenty years. It’s usually referred to as age-related macular degeneration—AMD. Thirty percent of persons over the age of 75 are afflicted, but mine was early onset, in my late forties. There are two forms of AMD, dry and wet. Fortunately, I have the dry type, and little change has occurred in my vision over the last two decades.

For the longest time, I didn’t understand what was going on with me. I’d miss freeway exits, pound the steering wheel and hurl insults at myself. Those errors are inconvenient and time-consuming to correct. I would mistake the identities of approaching students, friends, and even my own kids, sometimes with such wild miscalculations that, to my chagrin, those around me shrieked with laughter. At faculty meetings, colleagues teased me for how close to my face I held papers to read. One teacher handed me an essay written by one of her students, asking what I thought of it. I stared at the page for some minutes, hoping the handwriting would eventually come into focus. “Well?” she asked, peering hopefully into my face. I pretended to access the writing, too embarrassed to admit I couldn’t see it. Once when I was reading to my class, I stepped closer to a window and abruptly stopped. A student offered the paragraph number, assuming I had lost my place, but that wasn’t it. The bright sunlight had washed away all the words on the page.

When I sat down at the piano after a hiatus of several months, I stared at the notes so long without comprehending them, that I thought I had lost my ability to read music. One unidentifiable note was actually a quarter rest; another was a blob of printer’s ink. I could make out the notes better without my glasses, but was not able to recognize them fast enough to play with a steady tempo. Wearing highly magnified readers, I had to sit so close to the music rack that my body blocked my hands from the keyboard and my knee was wrenched so tightly under the instrument that I couldn’t pedal. I actually wept.

I always thought that eyeglasses could correct any vision problem, but when I finally went to my optometrist, he said no prescription of lenses could improve my vision beyond 20/100. He referred me to a cataract specialist who referred me to a retina specialist. Aha, there lies the problem. 20/100 vision means that a person has to be twenty feet away to read what others can at one hundred feet. Without lenses, my vision is 20/200, what is considered to be legally blind. What an outrage! I can see—houses, trees, people, just about everything. I cannot see detail, what it takes to read and to recognize faces at a distance.

Humans—all animals in fact—learn to adapt, and that’s what I’ve done. Since I couldn’t recognize my high school students’ faces, I learned to distinguish them by other physical features: gait, carriage, mannerisms, hairstyle, physique, height, skin tone. In observing people that approach me, I’ve learned to wait—one, two, three seconds, until they’re close enough for me to identify. I’ve purchased a half-dozen pairs of “readers,” not the kind you find in a drugstore with the power of +1.00 or +2.75, but special-ordered ones of +6.00 and distribute them throughout the house. I carry in my purse a miniature magnifying glass to read price tags or food labels. I’ve learned a neat trick on my iPhone: open the camera, click the home button three times—and viola!, the camera becomes a magnifying glass. Whipping it out in stores, I look like I’m using one of those cool QR scanners. I carry a fist-sized monocular in my jersey pocket while cycling and binoculars to plays, which I hope pass as opera glasses. I love watching movies on the big screen as well as using my 27” iMac—no laptop for me.

Tragically, the books that line the walls of nearly every room of my house are becoming mere antiques. My Kindle is my saving grace; I do nearly all my reading on it. I can see print with my readers, but I have to peer way down, under the damaged part of my retina, which quickly causes discomfort in my eye muscles.

As for reading music, I first tried photocopying my music twenty-five percent larger and taping two sheets of paper together to create one tall page of music. This was ineffective, however, because when I raised my eyes to look at the very top of the oversized page, I had to peer through the most damaged part of my retina. I then tried photocopying my music sideways, so that it sits on the music rack like a child’s primer lesson book. I’ve also replaced much of my old, cramped, marked-up music with clean, easy-to-read, newer editions, mostly produced for the piano teaching market. I wonder why large font reading materials are published for young eyes, when it’s we aging adults with waning visual powers. When I was a kid, my dad called me “eagle eyes.”

Fortunately, pianists memorize, and I get away from the printed page as soon as possible. I’ve started improvising familiar tunes by ear, something I’ve never done. It’s really true: when one sense weakens, the others grow stronger. Sight reading is a lost cause, except if the music is easy or in “Big Note” editions. Retired from the public schools and teaching piano again, I usually can’t read my students’ music on the rack and have to hold a copy in my lap. In correcting my students, I used to be mortified when I misread a note, but I’ve learned to be more forgiving myself. I’m doing my best with what I’ve got.

The human-made world is designed for people with perfect vision. Tough luck for the rest of us. I pick a product off a store shelf and read “Redken, 5tthAvenue, NYC, 83% something, Nature + Science, Vegan” Yeah, but what the hell is it? Body lotion, shampoo, conditioner, toilet cleanser? I’ll never know. On processed foods, the name brand is in two-inch letters, tempting descriptions are twice as large, but cooking instructions are in illegible six-or-eight-point font with fractions a fraction of that.

My greatest challenge is hanging onto my driver’s license. For the first ten years with AMD, I was able to renew it by mail, but finally the jig was up, and I had to go into the DMV office for a vision test that I knew I was going to fail big time. That day, the DMV was crowded as usual, and the harried clerk who waited on me was multi-tasking, filling out a form while she told me to read a line on the chart behind her, which required the acuity of 20/40. I couldn’t even tell there were letters up there, but I rattled off some random ones, hoping the clerk wouldn’t notice. She looked back at the chart, looked at me, asked me to read another line. “I can’t really see it,” I admitted. She gave me a form for my optometrist to fill out on which he granted me permission to take a behind-the-wheel driving test. Something I had done only once in my life at the age of 17, I had to redo at 61. I was terrified.

My colleagues at school thought this was hilarious. “Can you even read the street signs?” Some of them, parts of them, if I’m close enough. I find my way around familiar territory using landmarks, and I pay attention where I am in my town. Out of my comfort zone, I’m completely dependent on my car’s navigational system. I find I don’t really need to read to drive. Being colorblind would be a greater disability. Those sort-of round red signs with the big white lettering in the middle mean to stop; the black children on the yellow peaked sign mean a school is nearby; the upside down “U” with a red slash through it means no U-turn. Freeway entrances are green; rest stops are blue, orange means road work ahead. I have no problem reading those big black numbers on a white rectangular background which tell me how fast to go.

I was granted a two-year license, but I lost the privilege to drive between sunset and sunrise. I’ll admit I cheat on this occasionally. In the winter, when a shopping excursion runs past 4:30 P.M., I’m not willing to spend the night in the parking lot, and some early mornings when the light is only a thin splinter across the horizon, I risk driving to races or cycling events.

I wouldn’t drive if I believed I am life-threatening to myself or others. I always pay attention. I drive the speed limit in the slow lane, never swerve to make last second corrections, and follow the white line to my right when exiting freeways. I’m perpetually aware of the cars around me, taking up the slack for all those other drivers who are applying makeup, shaving, texting, tapping away on their laptops, or watching videos on their phones.

I’m not going to let low vision cause me to give up my active life. I deal with a dozen visual frustrations per day, but I rely on the power of concentration far more than the average see-er. In a recent triathlon, several athletes complained about getting lost on the trail run, while I had no problem finding my way by constantly scanning for the eye-level orange arrows posted on trees and tracking the participants running ahead of me. Family members and friends express sympathy, but I tell them not to feel sorry for me. Macular degeneration isn’t cancer or paralysis. Future scientific advancements may one day improve my vision; already researchers are experimenting with regenerating the macular through stem cells. In the meantime, I can see, just not as well as I would like.

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