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Sharing Stories

Ellen's Story

It took me a long time to make a firm decision to get a cochlear implant as I am brought up as a culturally deaf person, and acquired American Sign Language in my infancy. My family is deaf. We all use American Sign Language at home. I start communicating right away. I don’t remember hearing as my mother claims that I became very sick at 1-½ year old and lost it totally at age 2. My sister thinks I was born deaf. 

I was enrolled in a deaf residential oral school in 1962 at Lexington School for the Deaf with ancient body worn hearing aids. My audiologist said my audiogram shows both ears with 85 db and ends at 500 hertz and said it’s called the “corner.” It’s not really much and I can only hear low pitch. Nothing made sense because I had to turn the volume all the way up to full blast. Otherwise I won’t be hearing anything. So sign language and communicating with others using pen and paper was my way of life. 

I arrived in oral school and using sign language was prohibited. They were strict and many teachers keep on telling me not to use my hands at all because at that time I didn’t know any speech yet and needed to communicate. Nevertheless, I learned to lip-read and the art of imaginative hearing phonetics only in my head. I had some speech training all the way up to 12 years old. Before I knew, I was forced out of that school to regular schools due to the passage of the PL 42-143 to mainstream all handicapped children. I had no further speech training and the hearing aids were worthless for me at that time. I switched to BTE on the left ear only for my own safety… hearing environmental sounds. I stayed in regular schools all the way to high school and graduated without any support services such as sign language interpreters, note takers, and speech therapist. There was no support for deaf children in mainstreamed setting in the seventies. 

Cochlear Implant came around 1980s, it was gruesome and barbaric. I never considered it. I have always had the desire to hear and possess speech power. Until the technology has progressed a great deal, it became less dangerous and the benefits of hearing increased a great deal. It became attractive to me. Not only that my sister was involved in a movie making with Josh Anderson as an associate producer on cochlear implant called the “Sound and Fury”. She became very knowledgeable on that subject. And told me it is pretty safe now. I took her word for it. I finally got an implant in the year of 2002. It sure did sound strange and full of computer beeps. I was totally prepared for the odds up against me because I am a pre-lingually deaf and have no memory on hearing. It would mean I am up for an uphill challenge to learn speech and understand speech. My vocal chords will need some time of shaping up, like going to the gym to work out and beef up the muscles in the body. My vocal chords? It was weak. 

The map remained unclear till three months later; it becomes clearer and pleasant. When I first heard music, I cried for a moment to only realize how beautiful it is and it hits on my emotions without any involvement of my intellectual mind. For years, I am used to read music and feel music at the same time or watch a person interpret music in signs and I was not deeply moved but it is always my mind reading these lyrics. It does not move me and my emotions. I finally got it at that time, and this is why people could not live without it. It was a wonderful realization. Now the real challenge is to be able to acquire speech and understand it. It remains difficult for me. I kept on learning and downloading information. I learned the environmental sounds best because it comes in few sounds and easy to identify, such as doorbells, phone rings, engine sounds and many more. I know many late deafened people got the hang of it in few weeks or months. It seemed forever for me and I decided not to be discouraged. I started intensive speech therapy and after three years. I began to speak clearly and the catch here is that I have to articulate them slowly. It’s a new skill at my “age”! 

And yet I am not there yet because I have a full personality and express fully when using sign language. When I use speech I am not really “me,” as my voice and speaking is slowly picking up pace and a sense of “fullness.” The gap is continuously getting closer from signing to speaking to me as a whole person. 

I must continue to thank everyone at Northwestern University’s Communication and Speech Science Dept: Pam Fiebig, Patrick Wong and Chris Atkins and all student speech therapist for believing in me. Without them, I will never come this far. Because I do want to attain personal freedom using speech with anyone I meet outside of my home and social signing circle. Right now, I no longer use pen and paper that is really huge and new found freedom. I am thrilled everyday when people did not ask me to repeat what I said. I also can understand people with greater ease by using the symbiosis of hearing and lip-reading. The old days, lip-reading was hard and exhausting. I usually last only 15 minutes and then I tune out. I didn’t mean to be disinterested; it is basically hard work to interact with hearing people and lip-read. The energy doing that simply zaps me out. That hardship is gone. 

I am very glad that I made that decision to get the implant and connect with people everyday in small ways. Today, I still continue my speech therapy as I am in my 3rd year now and I know it requires work for anyone with similar background as mine. I have no regrets and would recommend this to anyone who wants it with an understanding that it requires therapy.

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