The following was published in “The Endeavor”, a publication for families and professionals committed to children who are deaf or hard of hearing.  It is in the Spring 2002 issue on pages 16 and 17.

Adult Cochlear Implant Recipient Shares Her Story

Diana: Tell me about yourself.

Jana:   I’m the only deaf person in my family. I was born deaf because of the Rubella my mother contracted when she was four months pregnant with me. I grew up in South Texas and went to hearing schools with no interpreter until I was in the fifth grade. I was oral ‘til I was 11 and then started signing when I was mainstreamed. I stayed in a mainstream program until I graduated. I could partially understand speech through lip reading. I used a hearing aid all my life and it did help me some, but I couldn’t hear any high frequencies. After graduation from high school, I went to NTID and got an AAS in Media Production.

Diana: When did you first start considering a cochlear implant?

Jana:   I think the first year I heard about it was in ‘93 after I moved back to Texas from NTID. I was TOTALLY (signed with great emphasis) against it. Ten years ago I think they still used the snap-on kind and I didn’t think that was so great. Now they have the magnetic headpiece and that’s much better. I also met a 45-year-old woman who had one and she also grew up without hearing. She was very pleased with hers. Then I went to some web sites and spent about a month investigating it and found out that it was really a simple procedure and that changed my attitude. But I also had a lot of frustration growing up using my hearing aid. I had problems with molds and distortion and thought that I could eliminate those problems with a cochlear implant.

Diana: Tell me about the procedure of being implanted. What was that like? How did you feel?

Jana: I got the implant during December 2000 and insurance paid for it 100%! I had never been in a hospital before, so that was my one fear. I was terrified! My family and friends came to be with me. It was just an outpatient procedure but I threw up three times from the anesthesia. The next day was really rough. I had a very rough recovery. I was allergic to the painkillers and so had to go it alone. I spent five days in bed. I had fever; I vomited for four days, and I had partial facial paralysis. The doctors warned it might happen. Finally, one week later, the paralysis went away but then I had balance problems for two weeks. I had to touch the walls to help guide me walking. One month after the procedure, they started programming my cochlear implant and providing speech therapy. But, it was funny, even without programming, two days after my surgery, I could hear the vacuum for the first time without aids. And then I couldn’t! It just went away. I hadn’t known what to expect but I started having headaches but without hearing. It’s hard to explain, but I wasn’t hearing but I could feel something happening in my brain. When they started programming, and I didn’t hear, I was disappointed. But one hour later I started hearing the beeping from the computer. Then when I was disconnected from the computer, I felt the therapists’ voices in my brain. They said it was hearing but it WAS NOT! I felt it. It was very uncomfortable. My first thought was how do young children bear this and no wonder they reject it! It was very uncomfortable, not pain exactly, but very, very unpleasant. And it was NOT SOUND!

My first session was three hours. When I was ready to drive home I was surprised that my seat belt made a beeping noise as it engaged. I didn’t know it made that sound. I think I was hearing all the high frequency sounds that I had lost for 35 years! I kept the CI on for nine hours and then took it off because of my headache. I put my hearing aids on and it felt so much more comfortable than the CI. Like taking off your dress shoes and putting on house slippers. I absolutely dreaded the second day. I was ready to just give it all up. I didn’t want to go through it another day. But my cousin kept talking to me and telling me that everyone said it would take six months to get used to it. So I agreed to give it another try but my first week was so sensitive. My brain just wanted to sleep and rest.

That initial period was just awful but after one month, I started to LOVE my implant. I tried putting my hearing aid back on then and it was just not good enough. I couldn’t believe that’s what I’d been using for 35 years! The sound was so distorted! I even tried a digital aid but the CI far exceeds it. I’ll never use a hearing aid again and I just got my behind-the-ear CI unit and am waiting to have it programmed.

Diana: Tell me about what you have started hearing since the implant.

Jana: I started to be able to understand a few sen­tences without looking at the person. But it’s funny. I can’t do it when I’m concentrating and trying to do it. It’s only when I’m not focused on that and just happen to “overhear” a sentence that I can truly do it. Also, I can separate out the different sounds and I could never do that with a hearing aid. I can distinguish between men and women’s voices now and I can also hear things like the shower running in another part of my house, and passing ambulances and sirens that pass by outside my house.

The sound I’ve come to HATE is the clattering of buttons and zippers as they clang around inside my dryer. I also can’t stand the sound of clapping in a small room. I have to turn off the CI. The sounds I love to hear are the birds. I can identify a pigeon s call, the crows’ awful caw, and then I just hear the other birds. But I LOVE the pigeon’s sound. I can hear s, ch, st, t, and k but it’s really hard to discrimi­nate between them. “Shhh” is okay   I can distin­guish that sound. But hearing all that helps me to use my speech more, because it reminds me to use those sounds in my speech. One or two people have said my speech has improved. But I still prefer the fluency of ASL to speech.

Diana: What kind of responses have you had to your decision to have an implant?

Jana: Well, I think I got my implant at the right time. People are more accepting. One deaf person did ask me if I wasn’t proud of being deaf and I said I was, but I don’t think my answer satisfied the person. I said I want to be hearing (signs used would be glossed as “able to hear”) not hearing (signs used would be glossed as a hearing individual ~sign used was the one at the lips that can be glossed as either speaking or hearing]). I am deaf, not hearing (sign used was the one that is usually glossed “think like hearing”). I feel that my sister, who signs fluently, didn’t want me to have the implant because she thought it would change my personality. And my mom, who had worked with me a lot when I was a child and really always wanted me to be oral, she said “Jana will remain Jana.” She doesn’t mind my signing now.

Diana: What kind of advice would you have for those considering implants for their deaf children?

Jana: Oh, I really try to avoid that issue. It’s sticky. But really, the individual should have the right to decide. I had the chance to try oral, Signed English, ASL, etc., and then a cochlear implant. I felt I got to pick and choose what was best for me. But if you implant before the age of three, then you have a higher chance of success. But if you wait ‘til after three, I would suggest you then wait ‘til the child is old enough to decide. But the person needs to know that they are deaf. The bottom line is never, never, never have high expectations of what the results will be from the implant. Otherwise, you will be very disappointed. Just wait and see what happens and what it does for you. And I would remind parents that a cochlear implant is not a cure for deafness.

Jana uses a High Focus Clarion by Advanced Bionics.

Her current hearing tests indicate —

Unaided: Left ear 110 dB, Right ear 120 dB.

With Hearing aid: Left ear 40-50 dB at 1000Hz, Right ear NA.

With Cochlear Implant: Left ear NA, Right ear 25-30 db at 6000Hz.

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