Miss-Delectable
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http://www.bradenton.com/mld/bradenton/news/breaking_news/13433222.htm
It was time to turn the thing on.
Everybody was crammed into a little room at the University of Miami's Cochlear Implant Center. Nobody could see the implant, of course. That little $90,000 triumph of science was already embedded in Robin Peterson's right inner ear.
If it worked, the 41-year-old would hear sound for the first time in a decade: music playing, people talking. And there would be some sounds she'd never heard at all: anything soft or high-pitched, like leaves rustling or birds singing. She'd hear Austin, her 1-year-old son.
It would be such a relief to hear instead of staring at someone's lips and guessing. That's hard, and it only works some of the time. Not at meetings or parties. Not even at Mommy and Me classes, which Robin tried and fled a couple of months ago. "I couldn't understand what they were all saying. This is my first time being a mom - what do I do? I'd like to talk to some other mothers. But I couldn't follow."
Robin was born deaf, after her mother fell victim to one of the last German measles epidemics in this country, in 1963. Her deafness wasn't total: She could make out voices if they were loud enough, even listen to music.
While Robin was young and attending mainstream schools, she didn't fall behind, as many deaf children do, because her mother picked up the teachers' weekly lesson plans and spent hours each afternoon working through what she hadn't heard.
She learned sign language in high school, went on to college and earned a master's degree in deaf education. She met a sheriff's deputy named Derrick, whom she would later marry: a hearing man who happened also to be a pretty nice guy.
Derrick's nice-guyness was such that he used to go to deaf nights at discotheques with her in New York, which made for some of the most awkward experiences of his life. The music was very loud and uncomfortably bass-heavy, everybody used sign language, and unaccompanied hearing people who tried to get in were turned away, not always politely.
"I remember thinking, this one night - `Dude, I'm in a crowd of people who hate me because I hear. Is this the way it's always going to be?'"
It's hard to move between the hearing and deaf culture, negotiate the inevitable tension. Robin did better than most, until a decade ago. Then, over the course of a few years, she lost almost all hearing in her right ear and 92 percent in the left. She didn't live in the hearing world anymore.
Maybe she didn't fully realize that until two years ago, when she and Derrick married and moved to Stuart for his job.
Little things made her realize. She got a job teaching deaf children for St. Lucie Public Schools, but when she needed to meet with other teachers, there were few professional interpreters available. Few local television news stations in Stuart had captioning; none of the movie theaters did. She had lots of deaf friends in New York, where she used to live; down here she met practically none.
Little things turned big: It exhausts you, isolates you, embarrasses you, Robin said. You can't keep up. And you sound funny when you talk: garbled and nasal. You don't even know it, but other people do. You make them uncomfortable so they stay away, some of them, and after a while maybe you do, too. You find others like you. It's just easier.
So now they'd turn the implant on - and Robin's life would suddenly change?
Well, maybe.
There was one woman, years ago, who called her husband on the phone just minutes after activation: "He said he loved me," she said, and pretty soon you had a room full of weepy audiologists.
But most of the time it doesn't happen like that. It's complicated.
"Probably things aren't going to sound like she remembers," said one of the audiologists, Stacy Payne. "It's kind of like walking into a room where people are speaking Chinese - if you don't know the language, it's just going to sound like a jumble of sounds. Her brain doesn't know how to hear with the implant yet."
Listening - as your fifth-grade teacher no doubt told you - is a skill. You learn to recognize and distinguish sounds by volume, pitch, timbre and point of origin. The only way you learn is by practicing, which is normally easy, because your ears are always on. But for that to happen there's a mechanical process that has to go right, in which the ear turns the physical vibration of a sound wave into electrical nerve impulses for the brain to interpret.
For Robin, that mechanical process has broken down at a particularly crucial place, the cochlea. It's about the size of a pea, and fantastically complicated. Also, it's two inches under the skull. Her cochlea is broken and can't be fixed.
So the implant device bypasses the process. On the outer ear there's a microphone, which picks up sounds; a microprocessor, which converts them to electrical impulses; and a transmitter to send them to a bank of electrodes - the part that's actually implanted in the cochlea - which stimulates the auditory nerves directly.
Implantation is, as one would imagine, a very delicate operation. Robin's was performed recently by Thomas Balkany, the University of Miami doctor who heads the only cochlear implant center in South Florida. He built some of the first implants 20 years ago, pioneered the process and has performed more than 1,000 since.
He has, for his troubles, been accused of bigotry and genocide. In the early '90s, when he began arguing the case for the cochlear implant in medical journals, activists discussed burning down his house. His implant is, after all, a prosthesis of sorts; its very existence implies that deafness is a handicap, a condition to be overcome. And by obviating the need for sign language, activists feared, it could erode and even kill deaf culture. Deaf people would be just like everybody else.
Balkany is a mild, politic man who always gave a nod toward the "rich and fulfilling" deaf culture in his journal articles. But it is, he argues, a culture under stress: Deafness is associated with low level of education, unemployment and underemployment. Outside of most major metropolitan areas, services for the deaf are poor or spotty.
His reasons for doing what he does haven't changed much. "We're trying to replace an essential sense. We're trying to help anyone who wants to hear better. (They) shouldn't tell anybody else what to do with their body."
Robin had years to think about the politics. But her hearing was getting worse. Derrick was worried. Marriage was difficult. "We were trying to mesh two lives - finances, couple things," Derrick said. "And one day we had an honest talk. `You're missing so much conversation - I need to know how much you're getting. And she said maybe 60 percent of what I said. Maybe. She was filling in the blanks."
She was no longer able to exist in both the hearing and deaf cultures.
"I have a baby, a husband. I want to be able to teach my baby when he's growing."
So when the insurance came through, she made the appointment with Balkany. He cut a slit in the skin behind her right ear and cut down into the bony cone there, opened up the cochlea and implanted an electrode bank. This took about 90 minutes.
It did nothing immediately for Robin's hearing - that wouldn't happen until the electrodes were calibrated and firing.
But it went fine.
It went great.
"Prepare to be sad," Balkany nevertheless said in his soft voice, as he does every time. Magic is instant; science isn't, usually.
Everybody, it seemed, was trying to dampen Robin's expectations.
"Remember, you're probably going to hate this thing today, OK?" said Kathy Bricker, an audiologist, back in the testing room.
"Yeah, I know," Robin said. "I'm prepared for that."
"I know you know. But do you know?"
Payne, the other audiologist, hit some keys on her computer. The electrons began firing.
"Hi, Robin," she said. "Can you hear me?"
Robin heard something.
"It sounds like a bell," she said. "I can hear myself talking. It's not a word or anything."
Payne went through some vowel sounds. "Ah, ah, ooh, ooh."
"Bing, bing, bing. That's what I'm hearing."
The audiologists ran through some more tests, but now they seemed more intent on reassuring Robin: You're going to start noticing things. Speech is down the road. This is totally normal.
Derrick was back in Stuart, taking care of Austin and planning a celebratory dinner party that wasn't going to happen.
Robin's mom, Sue Chonoles, walked with her out of the testing building and onto the street. You could hear cars and talking, even the sound of steps being taken, and underneath all that an air conditioner's hum.
Bing, bing, bing is what Robin heard.
"I'm not hearing speech," she said. "Just this annoying bell; everything sounds the same. I did not expect this. I thought I'd be hearing mumbling sound. I hope I can be patient, just to get through this. I knew to keep my hope low. I knew if I hoped I'd be crying now."
It was time to turn the thing on.
Everybody was crammed into a little room at the University of Miami's Cochlear Implant Center. Nobody could see the implant, of course. That little $90,000 triumph of science was already embedded in Robin Peterson's right inner ear.
If it worked, the 41-year-old would hear sound for the first time in a decade: music playing, people talking. And there would be some sounds she'd never heard at all: anything soft or high-pitched, like leaves rustling or birds singing. She'd hear Austin, her 1-year-old son.
It would be such a relief to hear instead of staring at someone's lips and guessing. That's hard, and it only works some of the time. Not at meetings or parties. Not even at Mommy and Me classes, which Robin tried and fled a couple of months ago. "I couldn't understand what they were all saying. This is my first time being a mom - what do I do? I'd like to talk to some other mothers. But I couldn't follow."
Robin was born deaf, after her mother fell victim to one of the last German measles epidemics in this country, in 1963. Her deafness wasn't total: She could make out voices if they were loud enough, even listen to music.
While Robin was young and attending mainstream schools, she didn't fall behind, as many deaf children do, because her mother picked up the teachers' weekly lesson plans and spent hours each afternoon working through what she hadn't heard.
She learned sign language in high school, went on to college and earned a master's degree in deaf education. She met a sheriff's deputy named Derrick, whom she would later marry: a hearing man who happened also to be a pretty nice guy.
Derrick's nice-guyness was such that he used to go to deaf nights at discotheques with her in New York, which made for some of the most awkward experiences of his life. The music was very loud and uncomfortably bass-heavy, everybody used sign language, and unaccompanied hearing people who tried to get in were turned away, not always politely.
"I remember thinking, this one night - `Dude, I'm in a crowd of people who hate me because I hear. Is this the way it's always going to be?'"
It's hard to move between the hearing and deaf culture, negotiate the inevitable tension. Robin did better than most, until a decade ago. Then, over the course of a few years, she lost almost all hearing in her right ear and 92 percent in the left. She didn't live in the hearing world anymore.
Maybe she didn't fully realize that until two years ago, when she and Derrick married and moved to Stuart for his job.
Little things made her realize. She got a job teaching deaf children for St. Lucie Public Schools, but when she needed to meet with other teachers, there were few professional interpreters available. Few local television news stations in Stuart had captioning; none of the movie theaters did. She had lots of deaf friends in New York, where she used to live; down here she met practically none.
Little things turned big: It exhausts you, isolates you, embarrasses you, Robin said. You can't keep up. And you sound funny when you talk: garbled and nasal. You don't even know it, but other people do. You make them uncomfortable so they stay away, some of them, and after a while maybe you do, too. You find others like you. It's just easier.
So now they'd turn the implant on - and Robin's life would suddenly change?
Well, maybe.
There was one woman, years ago, who called her husband on the phone just minutes after activation: "He said he loved me," she said, and pretty soon you had a room full of weepy audiologists.
But most of the time it doesn't happen like that. It's complicated.
"Probably things aren't going to sound like she remembers," said one of the audiologists, Stacy Payne. "It's kind of like walking into a room where people are speaking Chinese - if you don't know the language, it's just going to sound like a jumble of sounds. Her brain doesn't know how to hear with the implant yet."
Listening - as your fifth-grade teacher no doubt told you - is a skill. You learn to recognize and distinguish sounds by volume, pitch, timbre and point of origin. The only way you learn is by practicing, which is normally easy, because your ears are always on. But for that to happen there's a mechanical process that has to go right, in which the ear turns the physical vibration of a sound wave into electrical nerve impulses for the brain to interpret.
For Robin, that mechanical process has broken down at a particularly crucial place, the cochlea. It's about the size of a pea, and fantastically complicated. Also, it's two inches under the skull. Her cochlea is broken and can't be fixed.
So the implant device bypasses the process. On the outer ear there's a microphone, which picks up sounds; a microprocessor, which converts them to electrical impulses; and a transmitter to send them to a bank of electrodes - the part that's actually implanted in the cochlea - which stimulates the auditory nerves directly.
Implantation is, as one would imagine, a very delicate operation. Robin's was performed recently by Thomas Balkany, the University of Miami doctor who heads the only cochlear implant center in South Florida. He built some of the first implants 20 years ago, pioneered the process and has performed more than 1,000 since.
He has, for his troubles, been accused of bigotry and genocide. In the early '90s, when he began arguing the case for the cochlear implant in medical journals, activists discussed burning down his house. His implant is, after all, a prosthesis of sorts; its very existence implies that deafness is a handicap, a condition to be overcome. And by obviating the need for sign language, activists feared, it could erode and even kill deaf culture. Deaf people would be just like everybody else.
Balkany is a mild, politic man who always gave a nod toward the "rich and fulfilling" deaf culture in his journal articles. But it is, he argues, a culture under stress: Deafness is associated with low level of education, unemployment and underemployment. Outside of most major metropolitan areas, services for the deaf are poor or spotty.
His reasons for doing what he does haven't changed much. "We're trying to replace an essential sense. We're trying to help anyone who wants to hear better. (They) shouldn't tell anybody else what to do with their body."
Robin had years to think about the politics. But her hearing was getting worse. Derrick was worried. Marriage was difficult. "We were trying to mesh two lives - finances, couple things," Derrick said. "And one day we had an honest talk. `You're missing so much conversation - I need to know how much you're getting. And she said maybe 60 percent of what I said. Maybe. She was filling in the blanks."
She was no longer able to exist in both the hearing and deaf cultures.
"I have a baby, a husband. I want to be able to teach my baby when he's growing."
So when the insurance came through, she made the appointment with Balkany. He cut a slit in the skin behind her right ear and cut down into the bony cone there, opened up the cochlea and implanted an electrode bank. This took about 90 minutes.
It did nothing immediately for Robin's hearing - that wouldn't happen until the electrodes were calibrated and firing.
But it went fine.
It went great.
"Prepare to be sad," Balkany nevertheless said in his soft voice, as he does every time. Magic is instant; science isn't, usually.
Everybody, it seemed, was trying to dampen Robin's expectations.
"Remember, you're probably going to hate this thing today, OK?" said Kathy Bricker, an audiologist, back in the testing room.
"Yeah, I know," Robin said. "I'm prepared for that."
"I know you know. But do you know?"
Payne, the other audiologist, hit some keys on her computer. The electrons began firing.
"Hi, Robin," she said. "Can you hear me?"
Robin heard something.
"It sounds like a bell," she said. "I can hear myself talking. It's not a word or anything."
Payne went through some vowel sounds. "Ah, ah, ooh, ooh."
"Bing, bing, bing. That's what I'm hearing."
The audiologists ran through some more tests, but now they seemed more intent on reassuring Robin: You're going to start noticing things. Speech is down the road. This is totally normal.
Derrick was back in Stuart, taking care of Austin and planning a celebratory dinner party that wasn't going to happen.
Robin's mom, Sue Chonoles, walked with her out of the testing building and onto the street. You could hear cars and talking, even the sound of steps being taken, and underneath all that an air conditioner's hum.
Bing, bing, bing is what Robin heard.
"I'm not hearing speech," she said. "Just this annoying bell; everything sounds the same. I did not expect this. I thought I'd be hearing mumbling sound. I hope I can be patient, just to get through this. I knew to keep my hope low. I knew if I hoped I'd be crying now."
Did you know that I used to live next to Stuart? When I saw the title, I was hoping I see a name of someone I knew...but I don't know this woman.