December 29, 2005
Hearing Loss Helps Writer Find Voice
Michael Chorost climbs the flight of stairs to a room filled with metal file cabinets. He's never been to this place before, but he's greeted like a long lost relative. A smiling woman hands him what he has come to see: file No. 27392.
The 40-year-old science writer opens the file and sees a photograph of himself as a young child. He picks up a note, postmarked 1968 in Westfield, N.J., and written in his mother's familiar hand: "I have a 3-and-a-half year-old son who is hard of hearing. I understand you have a correspondence course of materials for such children and would like to enroll. Thank you."
Chorost's mother wrote these words to the John Tracy Clinic in Los Angeles soon after her son was diagnosed with severe hearing loss. In return, she received a personal letter and the first in a series of lessons designed to guide parents of young children with hearing impairment.
The clinic, founded in 1942 by Spencer Tracy and his wife, Louise, continues to help hearing-impaired children and their families through classes, testing and other free services. Chorost (pronounced Kor-ost) has traveled to the clinic from San Francisco to speak about his experiences with hearing loss as described in his book, "Rebuilt: How Becoming Part Computer Made Me More Human" (Houghton Mifflin, 2005).
As he reads his mother's words aloud, Chorost's voice catches.
"This is extraordinary," he says of the decades-old exchange that his mother has repeatedly referred to as a "lifeline."
Chorost spent his first three-and-a-half years of life able to hear loud sounds, but unable to hear speech. Today, such a condition would be identified by 2 months of age, notes Barbara Hecht, president of the John Tracy Clinic. Early diagnosis is crucial for speech acquisition since children who haven't acquired fluent and natural diction within the first four years of life are unlikely to ever develop it.
With hearing aids, Chorost could function sufficiently in a hearing world. The John Tracy correspondence class helped his mother to meet her son's special educational, social and emotional needs, and Chorost went on to attend both public school and speech school.
A bright and inquisitive child, he soon caught up verbally, but never felt like he fit in.
"Social norms are not taught, they are overheard, but the one thing even the most skilled deaf people cannot do is overhear," he wrote in "Rebuilt."
After earning a Ph.D. in computer technology, Chorost found work as a science writer and educational computing consultant. He led an uneventful and vaguely unsatisfying life until, in 2001, he abruptly lost his remaining hearing.
Because of his background in technology, Chorost knew he wanted a cochlear implant. The device consists of an external microphone and sound processor that looks like a cell-phone headset, a processor usually worn at the waist and a unit implanted beneath the skull, which stimulates the auditory nerve via electrical impulses. As of 2002, more than 23,000 adults and children in the U.S. with profound hearing loss had received cochlear implants, which can be used for children as young as one year.
The device does not restore sound; it replaces it with electrical stimulation. When his implant was first activated, Chorost said, "Everything sounded like gibberish."
It took him long, frustrating months to interpret the stimulation and thereby hear again.
He also struggled with the idea of becoming, in his words, "a cyborg." It spooked him to be "physically fused" with a mechanical device that literally mediated his reality.
"I had long lived a life surrounded by computers," he wrote. "Now the computer would go inside my body, literally woven into my flesh.... I would hear nothing but what its software allowed...."
Chorost wrote "Rebuilt" to work through his ambivalence and come to terms with his new identity. In the process of writing, he gained some surprising insights. "I felt fairly alienated from Judaism for a very long time," says Chorost, who attended religious school as a child but never pursued Judaism as an adult. "It was in writing the book that ... I found Judaism was more a part of me than I'd realized."
In one passage, Chorost described what happened immediately after he received a software upgrade for his sound processor: "'Kol od baleivav,' I sang, and stopped short in astonishment," referring to the opening line of "Hatikvah."
"Oh, that sounded good.... I kept going: "Penima. Nefesh yehudi homiyah." I felt tears well up in my eyes but I didn't understand why."
Back at the John Tracy Clinic, Chorost finds another nugget in his file. In one of her progress reports, his mother wrote, "It is my fond hope that we might introduce you someday to our little Mike."
The journey of Mike, the severely hearing impaired toddler from Westfield, N.J., to Michael, the author holding his file in Los Angeles, has been a journey from alienation to acceptance, from bystander to participant, and from deafness to hearing.
Chorost puts aside the file and heads downstairs, where a conference room full of admirers awaits. He enters the room and takes in the young children with cochlear implants, squirming impatiently in their seats. He listens to the introductory remarks and hears the loud applause that follows. At long last, everything sounds good.