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Deaf Couple Can Now Hear Their Voices
http://www.guardian.co.uk/uslatest/story/0,1282,-3745097,00.html

Guardian - UK - Feb 13, 2004

By SHARON COHEN

AP National Writer

MAYWOOD, Ill. (AP) - The young couple sat in the small room, waiting for a click on the computer that would transform their lives.

An audiologist adjusted the sound levels, then said, ''Go live,'' activating a microphone on a device hooked around the man's left ear.

On cue, the man's wife spoke.

''I love you,'' she said softly, her face glowing with an encouraging smile.

''Wow,'' he exclaimed as he heard a flood of muffled, yet magical sounds.

In six years together, Jenni and Russ Ewald had never communicated this way.

The deaf couple had just taken a giant step into a new world of hearing. They can now enjoy the sound of each other's voices - and the squeal of their daughter's laughter.

---

Russ and Jenni Ewald grew up without the soundtrack of everyday life.

There were no computers beeping, no sirens shrieking, no babies crying.

Both have been profoundly deaf since childhood because of meningitis. Jenni wasn't even a year old when she lost her hearing; Russ was 3 when his started to fade.

But both learned to speak as children and also communicated with sign language, lip reading and hearing aids, which amplify sounds but don't distinguish speech. Most of what they heard was low-pitched, meaningless noise.

They accepted their limitations, but it wasn't always easy.

''It took a long time ... to say, 'I'm going to be deaf until I die, there is nothing I can do, I'm going to learn to face it ... and make it a part of my life,' '' Russ recalls.

The Ewalds built a good life: They had friends, they had careers, and they had each other.

But along the way, there were everyday frustrations and indignities, from skeptical teachers to skittish employers to wary nurses who wondered whether they were up to the challenge of parenthood.

After their daughter, Camille, was born nearly two years ago, Jenni worried about missing important cues from her baby. She decided on a life-altering change: a cochlear implant.

The implant, which has been around since the 1970s, is an electronic device surgically placed under the skin, behind and in the ear. It activates the hearing nerves, allowing sound to be transmitted to the brain.

Hearing with implants isn't perfect, nor instantaneous. Voices sound robotic, at first. For many people, it takes patience and practice to understand words.

''The brain has to figure out what to do with all these new sounds,'' says Candace Blank, an audiologist who works with the Ewalds at Loyola University Medical Center, where the surgery was performed. ''It's like hearing a foreign language and having to learn it.''

---

Jenni Ewald was just beginning to talk when she lost her hearing.

Her mother confirmed her suspicions with a test: She crashed two metal pan lids together over her Jenni's crib. Her baby didn't budge.

Jenni adjusted to deafness by learning to speak in a family where sign language was not used. ''It was the only way to communicate,'' she now says.

But so much passed her by.

''At holidays, when my family got together, I felt left out,'' she says through a sign-language translator. ''I could understand things when people spoke to me face to face. But I was isolated within my family.''

She started falling behind in classes in middle school and took up sign language. But when she was 14, she rejected the suggestion of a cochlear implant.

''I didn't want to be the only exceptional deaf person among the crowd I hung out with,'' she says.

At the time, cochlear implants were less sophisticated and more cumbersome than now, with wires from ear to waist.

''I felt like I would be mocked if I wore these big long wires,'' Jenni says.

Her decision, she says, didn't go over well.

''My mother was disappointed,'' she says. ''My grandparents were disappointed, especially my grandmother. She prayed for me to hear. She could not accept the fact that I accepted the fact that I was a deaf person.''

After Jenni, now 30, married Russ four years ago, they began considering cochlear implants. Their research became more serious after Camille's birth.

Jenni recalls one worrisome night when she slept sitting up, rather than stretch out because feedback from her hearing aids could muffle sounds from her newborn baby.

Even so, Jennie sometimes still missed Camille's cries because they were too soft to trigger a vibrating, light-flashing monitor.

She also couldn't tell if Camille, who has normal hearing, was laughing or fussing. The nervous mother wondered what else she'd miss.

''I became more and more concerned - What kind of communication was I going to have with her growing up?'' Jenni says.

But Jenni - a victims assistance counselor at the Chicago Hearing Society - worried, too, about possible negative reactions from deaf friends.

''I thought this would be a test of their friendship,'' she says.

Cochlear implants are a sensitive issue for some in the deaf community who may feel abandoned, even betrayed by those who have the surgery, feeling they'll decimate the rich traditions of the deaf culture.

Jenni's friends were surprised, even shocked, but supportive.

''As long as I'm still who I am,'' she says, ''they accept it.''

Last April, Jenni had the cochlear implant. Six months later, it was Russ' turn.

---

Russ Ewald - unlike his wife - has vivid memories of sound.

He remembers being a little boy talking on the phone and listening to his mom's records: the Monkees, Glen Campbell, Three Dog Night.

But he also remembers a succession of hearing aids and doctor visits, his mother's somber words - ''hope for the best'' - and the growing realization he would be deaf.

''I hated it,'' he says, his dark eyes flashing. ''It had bothered me all my life when I look back at all the things I could do and no longer can do.''

But he, too, rejected the implant; it wasn't until recently that he saw a deaf person with one.

A fiercely determined college student, Russ depended on a note-taker and an interpreter in classes and managed to earn three college degrees.

But he soon realized being deaf could make a difference in the working world, when first interviews frequently didn't materialize into second ones.

Russ now works as a senior computer systems technician but is eager to climb the corporate ladder, conscious of being part of a family where so many members have top jobs in Fortune 500 companies.

''I look up to all of them and say, 'Why can't I be like them?' '' he says. ''I always try so hard, sometimes I have to try twice as hard.''

He's now hoping the cochlear implant will open doors. Already, it has opened some.

He now listens to music; the Beatles and the Doors are favorites. He hears his daughter and his wife.

Soon, there will be one more voice: Their second child is due this spring.

---

This year, Russ and Jenni are marking their first Valentine's Day navigating new territory.

Perhaps no day was as momentous as the first time Jenni heard her daughter's clear, high-pitched voice.

''I was so excited that I could finally grasp what Camille is saying,'' she says. ''I could hear so many things - her footsteps, her falling down on the floor, throwing toys, her laughter, her fussy sounds.''

There have been other milestones, small moments that loom large.

There was the day that Jenni heard Russ say ''give me high five'' to Camille and ran downstairs, unable to believe the new power in her ears. Another day, she was thrilled to understand Russ without sign language - even if he was teasing their cats.

The learning curve will be continuous, says Dr. John Leonetti, the Loyola specialist who performed the surgery on both Ewalds. ''They'll get out in the real world and ... hear a bird chirping, an alarm clock, a siren. The brain stores this new data. It's just like a baby learning to use his own voice.''

Russ, now 31, already is absorbing a catalogue of new sounds.

''Right now,'' he says, ''I can hear everything and I mean EVERYTHING. People at work love to test me and tease me and realize I am hearing.''

The Ewalds, however, are still in the early stages of recognizing words and sentences and help each other when one doesn't understand what someone else is saying.

Jenni also isn't ready to give up sign language, saying that for now, she still finds it an easier way to express herself. But Russ, who speaks freely, is encouraging her to speak.

''She will say her voice isn't perfect,'' he says. ''I tell her there are a lot of people learning English.''

Once, when they were running late as they headed to Russ' mother, Jenni was reluctant to call her on the cell phone.

''I told Jenni, 'Face the music. You have this device,' '' he says. ''You need to use it.''

She let Russ relay the message, then spoke briefly to her mother-in-law. ''I felt so good,'' she says. ''She heard me.''

But when Jenni's own mother bought her children's books and audiotapes for Christmas, she says she told her firmly she didn't want to be rushed and had to learn at her own pace.

''If there's that pressure,'' Jenni says, ''I'll be less successful.''

The Ewalds' future, says audiologist Candace Blank, depends on their motivation; the couple will still rely somewhat on lip reading - along with their new hearing.

Already, they've seen how that hearing has changed their daily rituals.

For years, Russ had grown accustomed to speaking loudly because he couldn't hear himself. Now he can, but Jenni still has to remind him some nights to lower his voice so he won't wake their daughter.

Russ is more than happy to oblige.

Guardian Unlimited © Guardian Newspapers Limited 2004

 

 
 

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