From PEOPLE Magazine
Click to enlarge
Even with a hearing aid, Sigrid could detect only the loudest noises. An adroit lip-reader, she held her own in face-to-face conversation, but scream at her through the phone of her Annandale, Va., home–rigged with lights to flag incoming calls–and she could scarcely distinguish a yes from a no. If Sigrid herself had to make a necessary call? "The best I could do was go to my neighbors and say, 'Please, I would appreciate if you helped me,'" says Sigrid, 57, who limited her calls to two a week so as not to impose. "You have to be very careful about which ones are important."
None, to be sure, was as momentous as the one placed to her husband's office in May 1996. Vinton–who is also hearing-impaired, but to a far lesser degree–had been in a board meeting when he took the call. "Sigrid? You can hear me?" he asked slowly. "Yes!" she cried, through laughter mingled with tears. "Keep talking. I understood that. I heard that!" Overwhelmed, Vinton, also 57, fired off a mass e-mail to their friends and family proclaiming the miraculous news: "Sigrid can hear!"
Strictly speaking, she is still deaf. But thanks to a remarkable medical advance, her world is now enriched by the strains of Bach, birdsong, the spoken word and, yes, even the ring of a telephone. Four years ago, at the Johns Hopkins University Medical Center in Baltimore, Sigrid underwent a cochlear implant, a procedure that has transformed her life as well as the lives of more than 20,000 other hearing-impaired Americans. Using the latest in miniature computer circuitry and software, the implant does the work of the cochlea, a seashell-shaped organ in the inner ear. As Sigrid's surgeon, Dr. John Niparko, explains, a normal cochlea is lined with about 30,000 microscopic hair cells that are stimulated by sound. They then turn the sound into impulses that are sent to the brain, where they are interpreted as language, music, car alarms or other auditory currency. The implant, which replaces missing hair cells, consists of a wire that is wrapped inside the cochlea and attached to a small external computer, often worn on the belt. "The computer translates sound information into electrical code," says Niparko, "which is sent along to a transmitter that relays it to the implant." The implant in turn conveys signals to the brain. Niparko points out that only single implants are being performed, because the technology to coordinate two has not been perfected. The same-day surgery, which costs as much as $50,000 and is covered by many insurers, is no more complex or risky than the removal of a wisdom tooth. After a couple of weeks' healing, the implant can be switched on–the point at which Sigrid made her dramatic call to Vinton.
"This was the first time we had a halfway rational conversation on the phone. That was really cool," says Vinton. Still, if technology has given Sigrid 85 percent of the hearing in her left ear, it has also presented her with the challenge of learning what the sounds she is hearing for the first time are all about. As part of her therapy to understand the subtleties of speech, for instance, Sigrid spends hours a day reading along with audiotapes of books. "Do you know what I like more than anything right now?" she asks. "It's learning how to listen. All of a sudden you can interpret what people are telling you about themselves. Tone, accent, richness. Optimism or negativism." Appreciating music has been harder. "There are simple pieces, like flute solos or 'Danny Boy,' that I love," Sigrid says. Complex orchestral works are more difficult to process. "They sound like garbage disposals sometimes," she admits.
As a person who had some memory of sound and, thus, would have less to relearn, Sigrid was considered a prime candidate for an implant. The roughly 4,000 American children born deaf each year are also good candidates if they're caught early in development, when their brains are still malleable enough to learn how to convert sound into meaningful language. "The window of opportunity is wide open at the beginning of life," Niparko says, "but generally closed for good by 12 or 14." Within a few years, he hopes to see the advent of implants that need no external computer or wiring. In the end, he predicts, cochlear implants will diminish the need for sign language and special schools.
Despite what many feel is a historic breakthrough, some in the deaf community vehemently oppose the implants. In Sound and Fury, a documentary on the controversy shown at this year's Sundance Film Festival, a deaf man declares that implants will "kill deaf culture." Without taking sides, deaf actress Marlee Matlin says many critics think the implants "symbolize the old philosophy that they are 'broken hearing people' and serve to invalidate their lives. For millions of people, deafness is not only a disability. It is a rich, beautiful language of signs that is over 200 years old. It is culture and the arts." For her part, Matlin, 35, says of the implant, "I doubt I'll be running out to try it. I've got a husband, a daughter, family and friends who love me and a successful career. So what more do I need?"
Sigrid clearly doesn't see it that way. "All of a sudden, communication is everything," she says. "You just want to connect with people." As a girl in "Wichita, Kans.–one of two children of Laurin Thorstenberg, a life insurance salesman, and his wife, Elise, a home economics teacher–she had felt marginalized after meningitis robbed her of most of her hearing. Still, resolved that Sigrid would grow up in the mainstream, her parents enrolled her in public school and never sent her to sign-language classes. "I was told by my parents that I was not deaf," she says. "We never talked about it. It was very, very hidden." Her mother quit her teaching job to drill Sigrid in speech, making her read aloud from children's books until she enunciated perfectly. "In our house I read the bedtime stories," Sigrid remembers. "I didn't have any professional speech therapy."
School was often frustrating for Sigrid, especially since most of her teachers weren't told the extent of her hearing problem. Relying heavily on memorization, she managed to maintain an A average, though there were harrowing moments, such as the time her English teacher threw a pop quiz by reading aloud from Romantic poems, then asking students to write down the poets' names. Sigrid had committed the poems to memory, but because she was unable to hear which ones her teacher was reading, she could only sit by helplessly. Frustrated, Sigrid burst into the classroom at day's end and wrote out each poem, line by line, with the poets' names attached. "All she wanted to know was who wrote these poems," she recalls. "But I couldn't tell her that I couldn't hear. So I just left the poems out on her desk and left. You talk about the teenage years being hard because of communication. It was the pits." Sigrid also found her condition socially isolating, in part because she couldn't hear music, the core of adolescent discourse. "I had a few close friends, but I couldn't enjoy parties at all," she says. "If you told me the Beatles were big, I would have thought, 'Who?' I went to dances, but I loathed it all."
Sigrid attended Agnes Scott College in Georgia, then transferred to the Art Institute of Chicago. In 1965 she finished her B.A. degree in art at Kansas State University, with a focus on rendering design–making drawings of interiors for new houses, restaurants and office buildings. Her career choice "was based completely on my hearing problem," she says. "Can you imagine the things women could have been in those days? You could be a nurse. No, I couldn't. I couldn't be a teacher. Couldn't be a secretary. I was scared to death I wouldn't find a job." She did, however–with an L.A. firm that designed theme restaurants. With independence and maturity, she no longer felt the need to hide her disability. "By about the age of 22, finally I felt comfortable saying, 'This is what's going on,'" she explains. "I could meet people halfway."
With Vinton Cerf she ventured even farther. He was a graduate student at UCLA when they met at a hearing-aid shop in 1965. Born in New Haven to Vinton Thurston Cerf, an aerospace executive, and his wife, Muriel, a homemaker, he moved with his family to Southern California when he was a boy. Throughout his childhood, Cerf experienced a progressive hearing loss, until, at 13, he was fitted for hearing aids, which largely corrected the problem. As valedictorian of his high school class, Cerf made a graduation speech titled "In Praise of Malcontent." ("I've always thought that progress happens because somebody's pissed about something," he explains.) After earning a math degree from Stanford, he went to UCLA in 1967 to study in the nascent field of computer programming. That November, he got a call from local hearing-aid dealer Ted Tadeusiak, who asked Cerf to come to his Wilshire Boulevard store on some long-forgotten pretext. In fact, the merchant was playing matchmaker.
"I come waltzing in, and not long after I got there this girl shows up," Cerf recalls. "Ted kind of introduces us and disappears. She's very attractive." He and Sigrid went for lunch and talked nonstop–by now she was a master lip-reader. At her suggestion, they went on to the L.A. County Museum of Art, though Cerf was no aficionado. "I said, 'Okay,'" he says. "Frankly, I didn't want the day to end." When she showed him a favorite Kandinsky, he says, "It looked like a floating green hamburger. And I said so."
Sigrid was smitten just the same. They were engaged within three months and married in September 1966. "It worked out beautifully," Sigrid says. Still the couple faced obstacles. Socializing in groups, for example, required an interpreter to enunciate spoken words for Sigrid–at up to $200 an hour. "The thing I hated most was going to a department store and having people realize, 'Oh, this woman can't hear anything,'" she says. "It would wreck my day."
Sigrid did interior design and rendering until 1974, then concentrated on raising sons David, now 26, and Bennett, 21. Meanwhile, Vinton blossomed as a computer genius, working to develop an early Internet and e-mail system for the Department of Defense before moving in the 1980s to MCI, which was later acquired by WorldCom. His hearing impairment, he says, helped drive his work on the frontier of cyberspace. "I was strongly motivated," he says, "by the fact that I could read e-mail better than I could handle any conversations on the phone."
For Sigrid, of course, the telephone was a constant nightmare. One low point came about 20 years ago, not long after the Cerfs moved to Annandale, outside Washington, D.C. The area had been hit by a blizzard, and Vinton found himself stranded without money at Dulles International Airport. He called Sigrid to ask if she could pick him up. "I'm saying, 'Sigrid, it's Vint'–screaming at the top of my lungs," he recalls. "Everyone's looking at me." But all Sigrid could do was shout that Vinton wasn't home. "She keeps saying, 'I'll take a message for you.'" Sigrid's condition had worsened by then–an ear infection wiped out half her minimal hearing, so that even with hearing aids, "everything sounded like this," she says, tapping a glass with a spoon.
Over the years, the technologically savvy Cerfs kept watch over the evolving field of cochlear implants. The procedure dates back to 1957, when French surgeons inserted a crude device that restored a bit of garbled noise. Progress in the U.S. accelerated in the '60s, and 1972 saw the first commercially available implant. Not until the past decade and the advent of sophisticated miniaturized computers, however, did the technology explode. By 1995, envious of a growing number of success stories, Sigrid contacted Dr. Niparko, a leader in the surgery. She was given a caveat: In rare cases, the procedure fails, and if so it destroys any trace of hearing the patient has, because implanting the device wipes out any remaining cochlear hair cells. For Sigrid, it was a no-brainer. "I'm 53 years old," she says. "It's a choice between hearing really well, with the possibility of hearing nothing for the rest of my life, or hearing a teeny bit for the rest of my life. I want the possibility of hearing a lot."
The first months after the implant were euphoric. "She just wanted to hear everything," says Vinton. "When she'd go for a walk, she'd report every bird she'd heard." The years since have been an adventure of discovery. On a trip to India last January she listened raptly to the British-accented conversation of maharajas. At home she savors listening to ER while sewing and not watching the screen. "This may not mean much to most people," she says, "but it impresses the heck out of me."
Her favorite toy, however, is an old nemesis. "I love phone calls–I race to the phone, I'm so afraid the voice-mail is going to pick up," she says. Perhaps the best measure of her newfound joy is that Sigrid–at least at first–liked hearing from telemarketers. "I'd say, 'That's fascinating, how did you get this job?'" she says. Then, the callers would get to their pitch, asking if she would switch her long-distance service to some company like AT&T; or Sprint. Sigrid had to fess up. "I'd say, 'I'm sorry, my husband works for MCI,'" she recalls. "'But it was nice talking to you.'"
Richard Jerome
Susan Gray in Annandale
- Contributors:
- Susan Gray.
