New York Post
A woman faces the truth as she slowly goes blind and deaf
From the time she was a little girl, Rebecca Alexander had trouble seeing, but no one in her life — not her parents, her siblings, her teachers, her friends — thought it was a big deal. When Alexander turned 13, she would no longer respond when someone called her name from another room, and her mother, alarmed, took her to a specialist.
Her mother wanted to tell her what they suspected was happening. Her father believed it was better to do it later — let her enjoy her childhood.
“Very early on,” Alexander says, “my parents had very different ideas of what I should be told.”
She didn’t know then that she was going blind and deaf, that she suffered from an extremely rare disease called Usher syndrome, for which there is little research and no cure.
Alexander opens her new memoir, “Not Fade Away,” with an epigraph by Helen Keller: “Although the world is full of suffering, it is full also of the overcoming of it.”
Keller, too, was born with hearing and sight; in 1882, at 19 months old, she was ravaged by an unknown illness that robbed her of both senses. More than 130 years later, Alexander herself is a modern-day Helen Keller, a woman of fierce independence and great accomplishment who cannot understand how this could be happening to her. “Fifteen years ago, I was told that, by now, there would be something to help stop the progression of this, and potentially even a cure,” she says. “Part of me feels really angry that people could be so careless, to promise something like that.”
Alexander grew up in Oakland, Calif., and writes that she and her two brothers remember their childhood as an “idyllic one.” Yet her father suffered from depression and mania; her parents divorced when she was 12 years old, just before sight and sound were beginning to be lost to her.
“At the time, my night vision was the most significantly impaired,” Alexander says. “So my dad said, ‘We can tell her she has difficulty seeing at night, and in time we’ll get to that place where we’ll tell her more.’” To this day, Alexander can’t recall when or how her parents told her the truth. She remembers her mom driving her to a conference held by the Foundation Fighting Blindness in San Francisco. She was 15.
All I knew at the time was that I had RP,” or retinitis pigmentosa, a degenerative disease that causes slow vision loss. She thinks her mother may have told her she needed to pay attention, that this was going to be her future, but she can’t remember. It was the first time Alexander saw guide dogs and canes, people her own age who were already blind. A polite girl with social graces, Alexander was freaked out when a visually impaired woman couldn’t make direct eye contact in conversation, her eyes drifting just a shade to the right.
“I remember looking at her,” Alexander says, “and wondering what she could see.”
Now she knows. Today, at age 35, Alexander has just 10 degrees of sight. In the book, she describes her shrinking field of vision as like “the end of one of those old Warner Bros. cartoons on TV, where Bugs Bunny sits in the center of the screen waving goodbye as the picture becomes an increasingly smaller hole, until it’s finally gone, leaving only blackness. That’s all, folks.”
As a teenager, Alexander intuited what was coming and would often have one recurring thought: “God, I’d rather die than be blind or deaf.” She was convinced she wouldn’t live past 21, and her teenage bravado and wildness concealed her abject terror — even from herself.
“I just couldn’t imagine living into adulthood,” she says. “I couldn’t imagine what that would mean.” She crammed as much living into her teenage years as possible, dating and getting her driver’s license and applying to colleges halfway across the country — a non-negotiable act of self-reliance.
Alexander partied the summer before she left, and one night, after fighting with her high school boyfriend and drinking too much, she woke up at 4:30 in the morning to use the bathroom and stumbled right through an open window. She plummeted more than 27 feet, breaking nearly every bone in her body.
“All of my friends went off to college, and I’m finding out my high school boyfriend is hooking up with chicks and joined a fraternity and is getting s—t-faced all the time, and I’m fully casted,” Alexander says.
She has trouble talking about the emotional and psychological impact of the accident, what the loss of a year meant to someone who had a clock running out on her vision and hearing, the rage she may have felt at herself or the world. Alexander is relentlessly positive, and though flashes of anger or indignation make their way through, she quickly reins them in.
Her arduous, year-long rehab, she says, “helped me gain a greater sense of comfort with being alone” — preparation for the time when she’d be isolated in a soundless, sightless cocoon. “I don’t know that I was as comfortable, before, with loneliness.”
At 19, she finally made her way to the University of Michigan, and it was there — after being driven crazy by sounds that were coming from inside and outside her head — that she sat in a doctor’s office, alone. And though this may not have been the first time Alexander was told, it was the first time she heard it.
“No sugarcoating here,” she writes. “I was going blind and deaf . . . The words pounded like a drumbeat in my head — blinddeaf blinddeaf blinddeaf . . . No cure, no stopping it.”
She went back to her dorm room and did nothing but get under the covers. By now, she was wearing hearing aids, but she always had her long brown hair down so no one could see. When she had a guy over, she’d tuck them under the pillow. She didn’t want to be different in this way, one that would announce her vulnerability, that might invite pity or solicitude.
“I remember when I was a little girl and we went skiing and I saw someone wearing a ‘blind skier’ sign on their back,” Alexander says. “I felt almost humiliated for that person. It was such an exposure. Now, if I went skiing, that would be me.”
The first time she used her cane — a thin, collapsible white rod with red on the bottom, to indicate she’s not 100 percent blind — Alexander was mortified.
“It’s not so much the insecurity as having to see people you see every single day, and all of a sudden you’re using a cane, and they don’t know what’s going on, and you have to stop and explain to every single person — it’s exhausting,” she says. “I’d almost rather wear a f—king sign that says, ‘I have a degenerative condition that’s making me lose my hearing and my vision — that’s why I’m using a cane.’ But whatever.”
Today, Alexander lives with her mini goldendoodle — not a guide dog — in a one-bedroom apartment on the Upper East Side. She has two master’s degrees from Columbia, a private practice as a psychotherapist and works as a spin instructor on the side.
If you did not know that she was hearing-impaired and nearly blind, you would never know. With her fast, clipped speech, upright posture and modest-yet-perfect eye makeup, she most closely resembles Marnie from “Girls.”
New York, she says, is both the best and worst place for those with disabilities. “I’ve been hit by cabs and had my feet run over a gazillion times,” she says. Alexander lives in fear of the metal double doors that stud so many sidewalks, and one night, rushing to an ex-boyfriend’s birthday party, she fell through one, badly cutting up her leg. She’s done J-Date and Tinder and last week got stood up, and has no idea whether potential dates Google her and get scared off.
“At this point, it’s a free-for-all,” she says.
She loves the city but can’t believe how awful strangers can be. She has legally blind friends who’ve gotten on the bus with their canes, only to be excoriated by strangers once they open a book, accusing them of faking blindness. She has been accosted by strangers who ask what’s wrong with her.
“People stare at me all the time,” Alexander says — she can see it, she can feel it. “But the thing is — if I want people to treat others with disabilities with respect, then I have to explain things to them.”
Last year, Alexander became a candidate for a cochlear implant, and after much agonizing, she went for it. “I felt like, ‘Life is not going to get any easier for me — it’s only going to get worse,’ ” she says. “This was not a decision I wanted to make. But I knew it would likely benefit me.”
The implant, in her right ear, will allow her to hear speech forever, although not the way hearing people do: It’s digitized, and music, she says, never sounds the same. Intense listening therapy is required, and it bothers her that people think cochlear implants somehow solve or cure deafness.
Alexander hates the viral videos of implanted children hearing their mothers’ voices for the first time: “They don’t show what the process is really like,” she says. “When I was first implanted, I felt like, ‘What the f—k have I done?’ All the residual hearing in my right ear has gone, and now I have this weird, f—ked-up Mickey Mouse voice in my head. And everyone says it’s like a journey.”
What it is, she says, is “a s—tload” of hard work.
Alexander is still coming to terms with her diagnosis, but doesn’t think she’ll ever fully get there. And that’s the way it should be, she says.
“I don’t think you can ever fully accept what’s happening to you — for anyone,” she says. “Terminal illness, debilitating conditions — you can prepare yourself to a certain extent, but until you’re facing it head-on, you don’t know how you’ll deal with it. You just take it as it comes.”
Asked if there was anything she wants to do before she loses all her sight, Alexander says, “I’m doing it. Climbing Mt. Kilimanjaro next July.”