Editor’s note: this is the second in a series of guest posts from bilateral CI recipient Adam Fitzgerald. In his previous post, he talked about the first steps of his CI journey.
Family and cochlear implants: for a recipient, these two things often go hand-in-hand. One of the things that surprised me most when receiving my cochlear implant was the total and complete lack of knowledge about CIs by many people around me.
I did probably far more study on the subject as I was introduced to the film “Sound And Fury” a number of years ago, which really sparked my interest in cochlear implants as I was volunteering at the Low Country Association of the Deaf at the time. Fast forward 10 years. Little did I know it way back then, as my hearing was “normal” at the time, I would eventually need the technology of CIs myself.
After I decided what company to go with, my coworkers and family knew there was something that could help me: but that was the extent of their knowledge. Lori, my wife, tried as I did to prepare family and friends for what to expect. I don’t think they really grasped the concept and just assumed it would be like turning on a light by flipping a switch. It was not until I had a conversation with a number of fellow employees that we realized we had a ways to go in educating, and the transition period might be a challenge. The people at work that I spoke to actually thought that I was going to have the surgery on Thursday and come back to work on Monday hearing perfectly.
Either I did not explain as well as I could have or they just weren’t fully listening. Honestly, I think it was a little of both. I tried to find a way to let them know by putting it in terms they could understand.
The other big misconception people had was that they were confusing hearing and understanding. Just because I could hear sounds, people assumed I could understand exactly what the sound was. Again, I had to explain that it might take some time before I can recognize what it is that I am hearing.
Even though I now have the implants, I will always be deaf. There will be situations where I will struggle. I had friends say, “I thought you could hear?” That was resolved with one simple question: I would ask them if they hear and understand perfectly every second of every day? Obviously the answer is no, so why do they expect me to?
I also tried to get them involved in my rehab. With sentence exercises, calling me on the phone with a set script. This helped me but it also let them see how much work it is going to take to get the most out of my implants. The hardest thing to get through was that I had to completely relearn how to hear, and it was going to take time and lots of practice. I told my friends and family that I would start with four hearing programs.
The first week I used program one. On day one the program seemed kind of loud, but as the week went on the volume seemed to get softer. After week one I switched to program two, which was a little louder than program one. I repeated these same steps each of the four weeks and by the fourth week found the volume I was going to stay at.
I told others that we had to do this gradually. It would have been way too much on me if they started right away with the maximum volume. I told them it was like standing in a pitch black room, then somebody turns on the light. Initially you squint and it is way too bright, but after five minutes or so the light seems not nearly as bright as it was when they turned it on. The brightness did not get lower, it just took my brain a few minutes to adjust. My hearing was the same way: it was going to take time as there were sounds I hadn’t heard in years.
My advice is that if you do get to the point of being a viable candidate, start educating those closest around you as soon as possible. This will go a long way in your transition and hopefully make things a bit smoother.
Did you have to educate your family and friends too? If so how did you do it and what kinds of things did you do?