It was bound to happen.
I'm currently working on an article that will feature families who've experienced a rough journey with a cochlear implant. The idea for the article came about when my daughter's friend experienced an implant failure. Her implant simply stopped working during dinner one night. It was really tough for my daughter's friend to have to go through several weeks without her implant, deal with another surgery and the long adjustment process afterward as she got used to a different brand of implant.
Don't get me wrong, the majority of my friends and the families that I know who have implants get great use out of them and have no regrets. If you do a search for cochlear implant stories, you will find a vast wealth of stories of implant users who are happy with them.
So when I got the idea for this story and went looking for families and adults to share their stories of difficulties, I took a beating.
How dare you discourage parents from considering an implant by writing only about the negatives?
Parents will get enough disclosure before surgery as the implant team will go over all the possible complications that can result. Why worry parents with things that happen in only 1 to 2 percent of the cases?
I also found my name dragged through the mud on one forum by someone who didn't even know me. Another accused me of running a PR campaign for the Deaf Community.
And the irony is that I'm getting closer to getting an implant myself.
All I really wanted from this article is to share the stories of families/adults who have gone through a difficult time with an implant. So that my daughter's friend and the other families that have struggled would be able to relate to others who have "walked that walk" and know that they weren't alone.
The real point of this article is not about the implants-- it's about the families' journeys. It's about sharing feelings of what families/adults have experienced when encountering difficulties with an implant. Every family/adult has a story that needs to be honored and shared, and sometimes it includes stories of families and adults who've had outcomes that fall in the that lower end of the statistic.
So if you're an adult with an implant who has had a difficult journey or a family with a child with an implant and you are willing to be interviewed, contact me at: parentsofdeafhoh (at) aol (dot) com.
Update: Here's the article-- Twists and Turns, Journeys with Implants.