I Am Going Blind, and I Now Find It Strangely Exhilarating

Posted by The New York Times

Written by Edward Hirsch

Mr. Hirsch is a poet, critic and the president of the John Simon Guggenheim Memorial Foundation.

I have been gradually going blind for the past 20 years. I didn’t pay attention — I thought I needed better glasses — until one night I popped out to go to the bathroom in a crowded movie theater. When I returned, the people and the seats had disappeared. I couldn’t see anything except the screen. I stood in the back of the theater until my partner, Laurie, came to find me. This was disconcerting, but I went about my business in my usual state of cheerful denial.

My eyesight deteriorated precipitously during the pandemic, but I didn’t notice because I was busy running a foundation from a small bedroom in Laurie’s house in Decatur, Ga.

I was in for a shock when I returned to New York City. I had trouble seeing things in my apartment. I had difficulty navigating stairs. People in my office found it hazardous to turn a corner when I was on the move. In the streets, as crowds thickened, I became a liability. I tripped over a man who was sprawled on the sidewalk. I stumbled into a stop sign. A tree branch clocked me.

My disaster was taking place in slow motion — I still had time to observe it. Two things triggered a change. First, I knocked over a little kid who ran in front of me in a restaurant. He screamed bloody murder, then brushed himself off. Then I accidentally bumped into a woman on a dark street corner. She was with a group of friends and started shouting obscenities at me. When I told people that I couldn’t see them, they didn’t believe me. You don’t look blind, they said.

My new eye doctor diagnosed me with a type of retinitis pigmentosa, a hereditary eye disease — my mother had it, and so does my younger sister. In the back of my mind, I knew that I had it too, but avoided the unhappy truth since there is no cure. It strikes a disproportionate number of Ashkenazi Jews and therefore seems like one more gift from God. I can barely make out at 20 feet what most people can see at 200. Plus, my peripheral vision is shot. Darkness is utterly dark. My doctor mentioned that, with my vision at less than 20/200, I was legally blind, and advised me to go get certified.

To start, I called Lighthouse Guild, an organization that helps people affected by vision loss. Taking seemingly simple steps like this can be difficult. It can feel shameful. Psychological barriers can get in the way. I’ve learned that you first need to publicly identify and acknowledge your disability. Then you must acknowledge, to yourself and to others, that you need help. And, finally, you must be willing to accept the help that is offered. You have to say yes. Some people never make that leap. For me, it was a relief. A burden was lifted.

After I got my diagnosis from Lighthouse and it was confirmed by the state, a world opened for me. I qualified for all sorts of free services that enable me to function more or less normally. I now have an advocate for the visually impaired. In the past year, I’ve gotten help from an eye doctor who specializes in low vision, an ophthalmologist and a computer specialist. Someone even came to the house to teach me to do things, including cook. Her specialty is Peruvian stew. My apartment is newly outfitted. My cooking teacher brought me a scale that calls out my weight — I haven’t convinced it to lie. On my own, I’ve purchased an array of handy tools. I have glow-in-the-dark tape on the light switches and a long string of motion-activated lights in the hallway. I carry a tiny, high-intensity flashlight everywhere. A magnifying glass is close at hand. I have a Seeing AI app on my phone that reads documents. It also describes scenes and people: “73-year-old man standing in front of a bookstore looking happy ….”

My most valuable training came from my cane coach. She is a COMS, a Certified Orientation and Mobility Specialist. Laurie ordered me a white tap cane years ago — it snoozed on a chair where I couldn’t see it — but my new instructor told me it was outdated. “Get with it,” she said. “No one taps from side to side anymore.” Instead, she measured me for a collapsible white roller cane with a ball on the tip, and we started rolling through Brooklyn and Manhattan — that’s her beat. Coach taught me to sweep the cane from shoulder to shoulder. It picks up every crack and fissure, freeing you to gauge things like electric bikes going the wrong way on one-way streets. She is like a batting coach — excellent on the fundamentals. Rolling a cane is like hitting a baseball, too — you need to keep your wrist loose and your hand relaxed.

My last tutorial took place after sunset. Coach brought me a pair of dark sunglasses to make it even more difficult for me to see. My vision continues to deteriorate, and she was preparing me for a foggier future. We walked from Grand Central to Union Square. It was Christmastime and there were pop-up stores everywhere. I used my cane to slap the sides of tents, to move through a crowd of shoppers, to part the sea of pedestrians. It was like being inside a video game — things coming from all directions. My sister says there is nothing fun about going blind, but I found the challenge exhilarating. In the end, we walked through the construction on 14th Street to the Seventh Avenue subway. I navigated the stairs. Commuters were pouring out of a train. My coach told me never to hurry, but I grabbed her arm and rushed for the last car. Once we were settled, she said, “That last move lowers your grade.”

I am now more muscular about my disability. I stop other blind people to talk about cane technique. I show mine off for the sighted. Laurie closes her eyes and I walk her through my lessons. She’d make an outstanding semi-blind person. I take a portable lamp into restaurants — managers scurry over to turn it off — lighting damages the ambiance. I explain that I can’t see my friends, the menu or them. It seems like magic when a waitress emerges from the shadows. Outside hotels, I ask doormen to lend me their arms. They are gents who escort me through the lobby like an aging prince.

I once felt that I would rather die than go blind. Now I feel the opposite. Daily life has a renewed delight and vigor. I am learning new things constantly. The most ordinary tasks, like going to the post office, have become terrifically interesting. In terms of everyday life, I feel that I am finally in there, more mindful and alert, more fully present. I have chosen curiosity over despair.

When my disability was invisible, I irritated strangers constantly — they thought I was rude or dithering or both. People are impatient when they don’t know why you’re holding up the line. Now that I signal my disability with a white cane, I find that I have tapped a well of visible kindness. It’s good to give people a chance to step up. The other day someone ran after me and offered to tie my shoes. I declined. I have been tying them wrong since kindergarten. While I was waiting for a light, someone said, “Excuse me, sir, but you may not know that you are standing in front of a fire hydrant.” Like a Buster Keaton film, my life is full of mishaps and averted disasters. One night my cabby was driving a Tesla. I couldn’t find the button to open the door. But he was chatty — he has a brother who is blind, he said — and waited until I had gotten to my front door. I could no longer see him, but I waved goodbye.

At the airport, even the T.S.A. people have thawed. They walk me through security. Someone in a striped vest asked me if I knew my gate. “Enjoy Atlanta,” he said. When I came home, a woman saw me searching for the cab line at La Guardia. “Roll after me,” she said. When we hit the line, the dispatcher zipped me to a car and even laughed at my favorite joke: “I look forward to not seeing you again.”

Edward Hirsch, a poet and critic, is president of the John Simon Guggenheim Memorial Foundation.