A deaf boy goes on an odyssey of sound to read aloud from the Torah on his bar mitzva.
By BARBARA SOFER2702-sofer(photo credit: Courtesy)
"And he heard" begins the Torah portion two weeks ago. It's easy for me to remember because the bar mitzva boy chanting the words used to be deaf. In the wooden pews, beneath the brass lanterns of Beit Yisrael in the Yemin Moshe neighborhood, I was sitting close enough to his mother to watch the first tear of joy slide down her cheek.
Gregarious Lisa Barkan likes to recall that her second son Haim Ben Zion, named for his two great grandfathers, was born so alert that even the nurses in the delivery room remarked on it. No sleepyhead he. Haim was already gurgling his first sounds at two months old. But at three months he turned silent. Then one afternoon, when he was in his car seat, the brake made a loud sound. Baby Haim, looking out the window, didn't turn his head. So Lisa turned on the radio. As the volume rose higher and higher, so did the level of fear that had until now lurked at the back of her mind. Haim didn't even blink.
Her son couldn't hear.
"It's hard to believe and hard to accept," says Barkan, a consultant for DigitalShtick Marketing.
Together with her husband, Jeremy, they began the tumultuous odyssey of parents whose child has a serious challenge. The culprit in Haim's hearing loss turned out to be a common virus that had damaged his hearing mechanism. Says Lisa: "The first specialist said, 'He's deaf. There's nothing you can do about it.' We were devastated. But the next expert saw it differently. He said, 'True, he's deaf, but I have a lot of tricks to try. This little boy can be anything he wants to be when he grows up.'"
AT FIRST, they tried a combination of hearing aids and therapy. "I must have said the word 'auto' a million times," says Barkan. "I was a complete wreck. Haim was always looking at my face. He became visual to compensate. There wasn't a cookie I could hide in the kitchen that he wouldn't find."
Since the 18th century, scientists have experimented with the idea of bypassing the damaged part of ears and directly stimulating the auditory nerve that leads to the brain. In the 1950s the first practical electronic devices were developed to simulate the work of the ear. Haim, two and a half, was a candidate for one of these - a cochlear implant, the so-called bionic ear.
"When the device was turned on, three months after surgery, a dog was barking outside," Barkan recalled. "He turned to the sound, his first bowwow. My son could hear!" And she had a chance to say what she'd wanted him to hear. "I love you." His own first word was not so emotional. Says Barkan: "He pointed to chocolate and said 'zeh' [Hebrew for 'that']. He always knew what he wanted."
Still, Haim had so many words and concepts to catch up on. You could ask him to pick up one of three items on the table and he simply couldn't do it. Three kindhearted little blonde chatterbox girls in nursery school adopted him and got him off to a good start, although his first sentences in Hebrew used their feminine verb endings.
The lion's share of the work fell to Genia Brill and her team of auditory verbal therapists, who invested tens of thousands of hours in Haim's speech development. He was accepted in regular classes at the Makor Chaim School. He became a star swimmer, deaf once again in the water without the external microphone necessary for the implant. But despite his outgoing personality, Haim often avoided group activities - unable to filter out the noises of many voices. When class got too noisy, he'd frequently tune out. Research was beginning to show that a cochlear implant in the second ear might help him sort out the jumble of sound. The procedure was still controversial. But Haim was already turning 10. Soon his brain would lose the elasticity needed for an implant. His parents had to decide.
A new trial awaited the Barkans. Jeremy was diagnosed with Hodgkin's disease. His chances of survival were assessed at 50-50. So while Jeremy underwent a bone marrow transplant, Haim received a second cochlear implant.
Learning the notes of chanting for the Torah requires tonal differentiation which has daunted many a non-hearing-challenged bar mitzva boy.
IN THE PEWS around me there is nervous expectation as Haim is about to read. This is Jerusalem, where there's always a story within a story within a story. I can't help thinking that this synagogue was dedicated in 1900 in one of the first neighborhoods outside the walls of the Old City. It became a border outpost of prayer in 1948 and revived after the Six Day War.
Rededicated in 1996, it too is celebrating a bar mitzva.
Haim sings the opening blessing with confidence. And then, his dad standing tall by his side, Haim Ben Zion Barkan reads flawlessly from the ancient scroll. If you didn't know his history you'd never guess this was anything other than a regular bar mitzva, the cusp of adolescence.
But of course, everyone in the synagogue does know Haim's history. His classmates from Makor Chaim break into song and dance in the synagogue. And on the women's side we, too, draw Lisa into a dancing circle of celebration of her journey. "I wish that first doctor who said 'there's nothing you can do about it' could see him now," she whispers.
In countries like Israel, where modern medicine is practiced, cochlear implants are common procedures - more than 150,000 human beings in the world have regained their hearing through them. Still, nothing is quite so commonplace when it's your own child.
Haim's Torah portion, Yitro, contains that puzzling phrase. Soon after the giving of the Ten Commandments, we are told that our ancestors who stood at Sinai "saw the thunder and the flames, the sound of the shofar and the smoking mountain." Generations of Torah students have wondered how they could see sounds. Sometimes, suggest the sages mystically, you can rise to a level where you transcend your human limitations and actually see sound.
At the synagogue we saw more than sound. We saw the wonder that hearing sounds can bring.
Mazal tov, Haim.
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