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

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me a white tap cane years ago — it snoozed on a chair where I couldn’t see it — but my new instructor told me it was outdated.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.”