Lei is home with a cold today so I decided to ask her to tell me how it has been for her to have her cochlear implants both fail. She’s a bit more reticent than usual because of her cold – normally she is quite talkative – but these are some of her thoughts on her life over the last ten days.
What was it like when you stopped being able to hear with your cochlear implants?
Things were going great at school. I was making friends and actually becoming kind of popular. Suddenly the implants started fritzing out. Kids wanted to hang out with me but it was so hard to communicate with them. I felt so upset because after being bullied and shunned at school, I finally made friends but I was cut off from them because i couldn’t hear. It totally ruined the beginning of a great school year.
When I went to school I sat in my dad’s class, did my work from all my classes and read. During lunch I could talk to my friends, it was just me and them. In class you have a whole bunch of kids trying to talk, plus the teacher.
So when you went to lunch, how did you communicate with your friends?
They wrote things down for me in my journal. That would take forever in a class because there are about 30 to 35 kids in my class. I feel like my friendships are going pretty well, but that’s the only time I’m able to communicate with them.
And some of the kids were just like, “It’s OK, forget it,” when I asked them to write things down. It just showed me that they didn’t want to be my friend, or the kind of friend who would work as hard as I would.
What did it feel like to be at school without being able to hear?
There are two ways to describe it. One, I felt like I was in a sound-proof bubble. Everyone was talking and I was in a bubble.
Or the other way to describe it is that I’m talking to some people and then a chasm opens up between me and them. The only people on my side of the chasm are my parents because they can sign with me. My implants were like a bridge to the other side, but then the bridge … poof! It was gone.
Tomorrow Lei and I will go downtown to meet with our audiologist and a clinical specialist from the maker of her CIs. They will run what is called an integrity test on both her implants and, if all goes well, be able to identify the problem and work around it so she can begin to hear again.
Regardless of what they find out, we will be investigating the possibility of replacing her implants with a different brand. While I am extremely proud of Lei for facing this courageously, learning some new coping mechanisms and being generally upbeat, from a technical standpoint this is a train wreck.
One thing that has made the last few days much easier are the meals, treats, books and visits from our friends. My personal stress level has gone way down because of not having to figure out meals on top of audiology appointments, phone calls, emails, insurance and scheduling. But also it just makes us feel loved and supported. So thank you to everyone who has made this time easier! You are all awesome and we are so fortunate to have you in our lives!!!