By GEMMA GALEA
When I was around 11 months old, my mother crept close to my cradle whilst I was sleeping and shouted. I did not move.
She shouted again, closer. I slumbered on, blissfully unaware.
My mother had just discovered I was profoundly deaf.
At the age of three, I was enrolled in Farrar School for the Deaf. I was taught using a method called Signed English. It is not a language but instead, an attempt to teach English through signs, with English grammatical structure.
After two years of consideration and testing, it was decided I was a good candidate for cochlear implant surgery. It wasn’t without risk; to have the implant means the entire cochlear must be removed, so any residual hearing is destroyed. There are also possible outcomes like facial paralysis, nerve damage and infection.
I remember being wheeled down the corridor in a hospital bed, age five, completely oblivious as to what was going to happen. Suddenly a doctor in scrubs appeared, removed his frightening-looking mask and began mouthing words at me that I could not hear.
My mother was there and they were both smiling at me. I felt an immediate panic rise in my chest and I began screaming wildly and fighting.
I remember the needle in my arm almost coming out as the nurses and my mother struggled to hold me down. It took three of them to hold me down as they struggled to inject the anaesthesia.
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I so badly wanted to hear stories like this where they didn't like their implant, I started to think I was the only one! I went deaf at the age of two because of combinations of medications I had to take when I was sick in the hospital. i got the implant when i was three maybe four. I don't remember the surgery or what happened when i wore it for the first time, but I remember taking it off as soon as I came home from school and refusing to wear the ci a few times at home or church. I started wearing it again because my family wouldn't stop telling me 'well maybe you'd understand me better if you would wear the CI!" They still say that, even while I'm wearing my implant! at first it was funny, but now it fells like they don't think I'm listening as hard as i can. Even if I wasn't wearing the implant, that dosen't mean they shouldn't involve me! i hated it because 1)everything sounded weird 2)it always fell of and i had the strongest magnet available 3) i felt like everyone thought i was faking how much i could hear (or not hear) with the implant. Mostly because i still couldn't hear as much as they thought i should have. i heard more but not enough to be considered hearing and it felt like a lot of pressure for me.
I don't know if I hate it enough that I'd give it up though, it has helped me and hearing people. I only wish I had been taught sign language. that would've helped me so much in school and busy places where my implant couldn't help me!
The only thing that made me confused in this post is the surgery part. I don't think they remove the cochlear during the surgery, they do have to do a lot in this surgery, but I don't think removing the cochlear is part of it.
Within the first three paragraphs there are already blatant factual errors. "The whole cochlear has to be removed." WHAT? The cochlea (that is the word, not cochlear) is not removed, in fact, it is NOT a discrete organ at all but channels through the temporal bone.
Did you ever consider the fact that she continued to have you rely on visual communication may have been the reason that you were unable to get a good deal of benefit from the implant? If a child is simply given an implant and not the follow up auditory training to build the pathways in the brain, the CI will not be successful. If your brain was not given the opportunity to code spoken language and sound without visual language, of course you will always prefer and use a signed language.
Obviously Gemma is not an audiologist -- So what if she mistakenly said they remove the cochlea. Her point remains: It destroys ALL natural hearing ability in the implanted ear(s).
Meaning, if at a later life the implantee were to wish to "revert" back to pre-operative state, that is impossible. Any residual natural hearing they may have had is no longer possible.
Why should a Deaf person have to be able to HEAR the English language?
I know Gemma - she can lipread, she can speak, and she can read and write. She put ALOT of effort into ALL of these areas as she grew up -- before I met her.
In other cases of Cochlear implants, I have friends who got them as a child - similar to Gemma - used them at school (with difficulty) and then proceeded to university, upon graduating they decided to no longer use the implant processor because of the other negative side-effects the concentration and emotional and social struggle that it caused. Again, they live a normal life with a normal job, integrated into both hearing and Deaf communities.
I do know others who chose as adults to get Cochlear Implants, and they love it. So much so that they got a second one too.
I am glad to not have a Deaf child, simply because as a hearing person it would be such a hard decision on what to do, because I am surrounded by people who do not use sign language, and thus would not be able/want to communicate with the child if they could not hear ("too much effort", etc")
Sign language isn't only for the Deaf. I am fully-hearing, but I prefer (linguistically) the Auslan language, for a variety of reasons including lateral thinking and auditory processing delays.
There will never be a simple answer for anyone in the position of the parent. But Gemma is at least trying to get the other side of the story that isn't so glamorous into awareness, so that parents CAN make a fully INFORMED educated decision. I know people who were never even told by the doctors that there was a community and language for the Deaf - I think that is sad, hiding the other side.