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Going Deaf and Blind in a City of Noise and Lights

Rebecca Alexander has a condition that is robbing her of her sight and her hearing. But she can’t stop moving at 100 miles an hour.

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Alexander suffers from a degenerative condition known as Usher's.  

When Rebecca Alexander walks into the party at a Hell’s Kitchen condo, it’s like someone turned on a 10,000-watt lightbulb. The room migrates toward her, absorbing her aura, a raw, happy energy. She had sold the party to me as “a regular event where young blind people meet somewhere that’s well lit.” It looks like any other party: loud music, appetizers, a dozen twenty- and thirtysomethings mingling in a room devoid of furniture to trip over. Most everyone in the room has retinitis pigmentosa, the progressive death of photoreceptor cells, which can lead to blindness.

Alexander, a pretty 29-year-old brunette who is also losing her hearing, grins hello. The Kanye West song that’s playing sounds to her like an auditory blur, and she views everything through two small holes called “doughnut vision,” which is like if you squeeze your hands into little circles in front of your eyes. A typical person can see 180 degrees without turning their head; Alexander can see less than 15 degrees. Her pupils dart back and forth, to figure out who’s there, scanning to compensate for her brain’s unfortunate habit of wrongly filling in blank spots, putting empty space where there’s a person. Her condition is known as Usher syndrome type III, a recessive genetic mutation causing her retinal cells and ear-hair cells to die, an ailment shared by fewer than a thousand Americans. A typical sufferer is blind and completely deaf by his forties.

Within moments of entering the party, she’s in a clique, seamlessly shifting so that the voices come toward her good left ear and her back is against a wall, cutting down her scanning area. Her hearing aids are hidden by silky, dark hair. She’s in hyper mode, which is how she gets when she can’t see or hear much. To conceal this, she talks up a one-way storm, in a superloud voice, blue-green eyes flashing happily at you. She’s now telling her friend Lis Perry, a sales manager with retinitis pigmentosa, about how she balances her psychotherapy practice (she specializes in eating disorders) with the fifteen weekly spinning classes she teaches.

Others join the circle around her, and the conversation turns to Governor David Paterson. The consensus is that perhaps the public will begin to understand that most legally blind and deaf people don’t live in a cloak of total darkness or silence. But Alexander is not listening. She spots crackers and cheese mushed into the carpet. “Uh-oh! No one step over there.” She rushes off to find paper towels, like a guest at any other party.

A few weeks later, Alexander breezes into a midtown diner on a Monday night. She likes diners because they’re not dark and loud like the nightclub in Southampton where she spent Saturday night. “Alan [Pinto, her on-again/off-again boyfriend of four years] had to lead me around all the dark stuff on the floor,” she says. “I always hold close to someone. People see me and say, ‘Hey! Rebecca!’ And having to find them, and then know who they are in the dark—it’s all so annoying.” She plops down in the booth across from me and announces, “You know, I really think that the people around me have been hindering my independence. I know they do it because they care, but I just drove from the Hamptons to here.”

I barely conceal my instinctive sense of alarm at the idea of a driver with such limited vision on the road.

“I was fine,” she continues. “I can see. And I felt so free. I did the Long Island Expressway and came right in over the bridge. During the daytime, it’s okay! I can go where I need to when I need to. That’s so important for me.” The waiter appears next to her and asks her what she wants. He’s alongside her right ear, and she doesn’t see him. I lift my finger into her eye line and point at the waiter.

Alexander moved to New York from Los Angeles because her inability to drive at night left her stranded and dependent. Not long before she moved, driving home on Wilshire Boulevard, she hit a homeless man who had wandered into traffic. “I heard the thunk. It seemed like he was really injured, and I was freaking out and crying.” It turned out he was okay. Horrified by the thought of her behind the wheel on the L.I.E., I suggest that what she needs is a driver. Her face drops, and she changes the subject. (Later, I text her friend Josh Swiller about the driving. He texts back, “OMG. How many people died??”)

To improve her hearing, Alexander will also eventually get a cochlear implant. It’s not a save-all—they can mangle the texture of natural voices and music into a mechanized sound, like a bad answering machine. But she’ll be able to continue her psychotherapy practice, much like Rush Limbaugh continued his radio career after getting an implant in 2001.


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