by Maggie Fazeli Fard
Published in Community Life, October 03, 2007
Winner:
Third Place, Feature Writing
-2007 NJ Press Association
Second Place, Profile Writing
-NJ Society of Professional Journalists
Ben Vercellone at the piano is a beautiful sight. His long body, equal parts youthful vigor and post-adolescent awkwardness, is suddenly at ease. He shifts slightly in his seat, uncovers the ivory keys encased in a mammoth Yamaha that counterbalances his own frame, and tilts his head down.
Suddenly, he strikes. Ben hits the first note with confidence and precision, and slowly the fluid, Romantic melody of a Chopin classic mingles with the sparks of dusty sunlight floating into the living room. He grunts in frustration when his fingers stumble. He’s not nervous, he quickly explains, though he is playing for a stranger; he just hasn’t practiced his requisite 200 hours on this piece.
Still, his concentration is unbroken. His brow is furrowed and his eyes seem to be boring a hole through the keys. Except they’re not. Ben can’t see the keys.
Ben’s world went black when he was 4-and-a-half years old. He was in the car with his mom and older sister. The car hydroplaned, sending the trio head-on into oncoming traffic. His mom tried to swerve, but they were caught in the metal fangs of a pickup truck with a plow attachment. Ben’s mom died instantly and his sister passed away shortly thereafter. Ben survived, but emergency services found a skewered boy when they arrived. His face had to be completely rewired and doctors couldn’t save his eyesight.
“Those surgeons did a great job,” Ben says enthusiastically. “It’s really cool how they were able to patch me up.”
It’s been more than 14 years since Ben lost his mother, his sister and his ability to see, but he chooses to look at the good things in his life – including a “cool” scar running the entire way around his calf that his family endearingly calls “the shark bite.” It is yet another reminder of the accident that Ben thinks of as fateful rather than tragic.
He doesn’t talk about the pain and loneliness that he and his father, Jeff, felt in the wake of the crash; he fondly remembers the “very special” Christmas they had thanks to the support of the Montvale Fire Department, their church, and the community that rallied around them. He doesn’t talk about losing his mother and sister; he concentrates on the second mom and brothers he gained when his father fell in love again and remarried.
And he doesn’t talk about not being able to see; he’d much rather playfully boast about all the stuff he’s learned and experienced since he was 4 years old.
“Ben has never complained about being blind,” says Elaine Vercellone. She is Ben’s stepmother, but the family prefers the term, “Mom on Earth.”
“Whatever he’s wanted to do, he’s taken on,” she adds.
This includes playing the piano, which he’s been practicing since he was 7, and skiing, which he first experienced while crouched between his father’s legs. Today, skiing is a cherished father-son pastime, experienced together using a microphone.
“The reason he can ski double black diamonds is because he can’t see them!” Elaine teases as Ben tries to explain the complicated grid system he and his father use to navigate the slopes.
Over the years, the Vercellones have become experts when it comes to new technologies to assist the visually impaired. Their eyes and ears were always open, and in 2002, Ben traveled to to participate in a research program. A doctor, they had heard, was trying to help people who were traumatically blinded to see again.
Ben touches the side of his head as Elaine explains the procedure.
“It wasn’t FDA approved, so it had to be done abroad, but the doctors working on it were American,” she says. “The visual cortex is located in the lobes on both sides of the head.”
Ben pulls away strands of sand-hued hair revealing a quarter-sized black and metallic node sticking out of the right side of his head, close to his ear. He has a matching node on the left side.
“They are connected to Ben’s visual cortex,” explains Elaine. “Wires hook it up to a computer and the computer produces currents that create an image in his brain.”
Ben underwent hours of extensive testing, with 70 wires hooked up to each side of his brain. “I had headaches,” he remembers.
The image was supposed to be produced by phosphenes, the sparks that appear “when you rub your eyes really hard,” Elaine explains. “They don’t know why it didn’t work.”
Ben clarifies that the procedure wasn’t a complete failure, noting that he could see a few phosphenes – just not enough to create the desired image. Of the 12 people who underwent the procedure, Ben was the only one for whom it didn’t work.
The doctor that devised the procedure has since passed away, and no one has picked up the research where he left off. But the Vercellones hold out hope that someday Ben will be able to see again. And if not, that’s OK, too, says Ben. “We’re still hopeful,” he says. “We were a little disappointed. I was disappointed. But I’ve accepted my blindness more now. I’m not desperate to see again.”
Ben and Elaine hope that his self-acceptance will someday translate into public acceptance. To that end, for the past eight years Ben has returned to Memorial Elementary School every spring, giving a presentation to Arline Frankel’s kindergarten class about what it is like to be blind. He is joined by Elaine, and more recently by his youngest brother, Michael, in presenting a program they call “Courage.”
“We talk about different things,” says Ben. “We talk about how even though I’m blind, I can do different things. A lot of it is about a positive attitude.”
He tells the students about how he can ski, play the piano and trumpet, ride a bike, read, do his homework, play games, swim with dolphins, go to space camp, ride rollercoasters and dream.
He demonstrates his toys, his talking laptop and his talking measuring tape – a big hit with the kids who enjoy hearing the pre-recorded voice struggle with words like “twenty-two.”
But most of all, he likes to make the kids laugh. He shows them pictures of him in his clown costume – Ben is a Smile Factory Clown School graduate – and regales them with tales of his eye escapades. One of Ben’s eyes is prosthetic, and the students get a kick out of hearing about the times nervous teachers called Elaine to report that the eye was crooked or that it had fallen out. When making presentations to older students, Ben sometimes pops the eye out on purpose – a trick that gets regular requests. He once received a thank-you note that read, “I’m sorry you didn’t pop your eye out this time. Maybe next year.”
“The kids get so excited,” says Elaine. “I get the feeling the kids go back to class and say, ‘Mrs. Frankel, I want to be blind!’ Mothers have told me their kids get home and put a blindfold on to see what life is like for Ben. We’re taking away the stigma.”
In June, Ben graduated from Pascack Hills High School and made what may be his last class presentation for a while. Last month, he moved to Louisiana to attend the Louisiana Center for the Blind, where he will receive the skills necessary to help him assimilate into a university environment. He has his sights set on studying music at Montclair State next fall.
“When I walk with Ben, I’m just so proud,” says Elaine. “Some people might be uncomfortable, but we’re so proud. Just knowing what he’s gone through and he’s risen above it. We really feel like we really live life. Some people haven’t had the chance and we really live it.”
Ben interrupts her boasting. “When we say live life,” he explains, “you’ve got to make use of the day. No one does it perfectly, but you’ve got to realize all the gifts you have. Gifts come in different packages. Even pain.”
Tagged: health, montvale, new jersey, science