Cindy's Story

I’m a lurker on the Nucleus Forum, Cochlear’s users listserv. There has been a discussion on an e-mail that’s been circulating called “Bad News about Cochlear Implants” (I’ll blog about that another time), and I came across a post from a cochlear implant user who is actively involved in the deaf community and was against CIs for awhile until she came across some things that changed her mind. Her story was such an inspiration that I e-mailed her privately and asked her if I could post it on my blog. She gave me her permission and here is her story:

I just want to point out something in regards to the Deaf community, actually just to share my personal experience…..

First, understand that I myself was amongst those who are against CI’s. I grew up deaf, have a deaf sister, am married to a deaf man, and am actively involved in the deaf community. I feel a need to explain a few things…

I am a paraeducator working with special needs children, K - 4. When I first began my job 23 years ago, I worked in a middle school classroom. There was another classroom that had oh about 8-9 deaf/hh students. The communication mode in that classroom was Total Communication. As a deaf adult fluent in ASL and the deaf community, I was sometimes asked to visit this classroom and work one on one or in groups with the deaf/hh students. Some wonderful fun times!!

Over the course of 23 years, I have worked with several students that were implanted, probably somewhere around 7 students, total. Only ONE of these students wears his implant today. Whatever the reason was………it gave me the idea that implants were BAD. I could not for the life of me figure out WHY any parent in their right mind would put their child through surgery for something that did NOT work. I did not have the first hand experience of witnessing a child SUCCESSFUL with a cochlear implant. Even the ONE student that I knew could hear with his, did not spell SUCCESS to me. His speech was not good, he didn’t hear much more than his name being called, he still depended on sign language, his equipment was either broken or the batteries were flat…all sorts of negative signs.

So you can well imagine, if I was in the company of other deaf adults, and just one person said, “cochlear implants are BAD” I was wholeheartedly
agreeing!! (tsk, tsk!)

So how did I get to the point of acceptance? It was about two years before I made the decision to go with my own CI; I had to write a term paper for a class about language acquisition in deaf children. It was then that I stumbled on professionally written material regarding cochlear implants in children. My research impacted me in such a way that I became intrigued by the positive reports and the advancements in technology, and I expanded on my paper to include the role of the cochlear implant in a child’s language development. All was done and good; I turned in my paper with the knowledge that well, perhaps cochlear implants could be a good thing IF the parents really worked with their child and set aside the time, money and patience to guide them through their rehabilitation. It had nothing to do with me; I was a successful deaf adult quite settled in my ways and living a happy life.

A few years later, I became ill with daily vertigo attacks, balance issues and lost the ability to wear my hearing aid due to Tullio’s Phenomenon and Meniere’s Disease. I was devastated because I could no longer hear sounds that I had, such as deep piano keys, my dogs bark, doors slamming and some
(deep) voices. Nothing, absolutely nothing, accompanied things that made sound now. My doctor suggested the CI, and I actually got upset with his suggestion. Then, a few days later, I remembered my research on the CI’s. I decided that it might be worth a try, because I was already deaf. Either it would work, or it wouldn’t. I’d be in the same boat as I was if it didn’t work. But what if it DID work? Would I like it? Would it make my life better? Could I talk on a phone someday and have a regular conversation by hearing and speaking to people? All my poofed dreams of the past might actually come true. Could I make time in my life to learn to hear with this technology? Could I afford it? Would my deaf friends think I’d gone insane??????? I made the decision to give it a try. It’s within my nature to be curious and try things, at least once. :)

The choice I made had a wonderful outcome, and I chose to become bilateral almost immediately afterwards, but my point is: I had to be EDUCATED with FACTS in order to accept the whole idea of cochlear implants.

Even though it irks me that somewhere, someone took advantage of cut and paste and some sort of editing tools to start a “Bad News about Cochlear Implants” email circulation, I am also aware that there are MANY deaf, Deaf, HH people out there who have yet to understand and be brought up to speed on the positives about cochlear implants. One of my close Deaf friends (graduated from NTID) did not even know that a cochlear implant is removable for sleeping at night!

Yes the Deaf community is struggling with the idea of implanting children and babies. Some have very interesting points of view in their arguments.
Others are basing their opinions on myths. I understand them. I was in their shoes once. The choice to implant is so very individual, but the choice to learn in an unbiased way is also very individual. Choices can be difficult.

We learn best by example. In the time that I’ve been implanted, my best friend chose to get a CI. Then my husband made the decision to get implanted. Now my best friends husband is anticipating his bilateral surgery!!!!!!!

Granted, they (CI’s) are not for everyone, and even some who do get implanted do not have the best results…..but I feel everyone deserves to know the facts about cochlear implants, and base their opinions on facts, not myths. I look back now and realize that all that I’ve known, all that I’ve learned, has been for my own good. I’m so blessed to have had such positive outcomes with my CI’s.