It has been 20 years since I got my first cochlear implant activated. The fact that it has been 20 years is mind boggling from both “has it really been that long” and “it feels like it was longer ago.”
My journey with my cochlear implant has been a rollercoaster ride. To give insight, I got my first cochlear implant when I was seven years old. The opportunity to get one was due to the healthcare system covering cochlear implants to children with profound hearing loss. In the beginning of the program, you could only be provided with one cochlear implant so I have one on my left ear as that is where my hearing loss is more profound, meaning, I can’t hear much of anything in that ear. That is why I only have one cochlear implant.
It is funny to look back because at the time of my activation, I was giddy. I remember tapping the floor desk chair pad with my foot and quickly pulling away. And doing it again, and again due to being curious and aware of the sound. According to my audiologist, that is not normally the reaction when getting your cochlear implant activated as it is an overwhelming experience.
It’s interesting to remember being excited to hear and learn sounds. I have always been like that growing up. But over the years, I had issues with the cochlear implant. I had to get the surgery again over a year later after activation due to the internal part of the cochlear implant malfunction known as hard failure. That was not a big deal at the time but it explains a trigger response in future issues. The hard failure meant I heard nothing except a buzzing. Just buzzing.
So imagine 7 years later and I hear the buzzing again. I internally freaked out at the possibility of more issues. I had the critical thinking skills to remember that the hard failure was hearing nothing but buzzing. The issue that started at 15 years old was buzzing but I can also hear my surroundings. Extremely weird to me.
Sadly, that issue took 3 years to resolve. It wasn’t as simple as a hard failure. There wasn't anything that signaled to the audiologists and the company that there was a clear issue. It was “let’s try this” so many times. Resolving one issue and another one reappearing. Over and over and over.
This was my first insight into how bad the accommodation policy was in my public school education. I couldn’t use my usual tools that provided access and independence. But I also could not change my plans due to needing my audiologist to provide documentation that my situation has changed and provide new recommendations. This was largely due to the hope that the next solution would work. It was also due to the resources available and funding restraints that align more with having devices to hear than providing access to people with hearing loss. The policy does not consider when the situation changed or developed. So I had to both advocate for myself (which failed more times than I can count), and do what I can to still continue my education and graduate.
This specific issue that took 3 years got resolved after high school due to someone who does research and development for the company to come in, do their own testing, go back, do more testing, and then their recommendations worked. I essentially needed to reduce how many electrodes to have on. Such a simple solution but took 3 years of my life.
Sadly again, that was not the end of the issues. I also have pain around my magnet. In 2024, I had to not wear it for 4 months until I had a pain management solution to be able to wear it again. I do not recommend not wearing it for months and trying to put it back on slowly. I think my brain still hates me for that.
I constantly hit a wall and had to wait and recover to continue wearing it again. Now, I am honestly just waiting for the next problem to come up. That is how much the issues has impacted me and it is not a fun place for me. The program developed and expanded over the years that I had the opportunity to put a cochlear implant on my right side but I refused. I would not be surprised if I run into another problem that is significant that I would just stop wearing my cochlear implant.
My hope that it is choice to not wear it before I am forced to stop wearing it for my own mental health. The issue is that society is not great with hearing accessibility and is still largely dependent on wearing devices. Devices are great. I wear my cochlear implant and my hearing aid. I will not lie, I wear it for the convenience of hearing people more than for myself. The only joy I have with the devices is listening to music which is something I do to regulate and calm myself down. If society becomes more accessible to me that I am not concerned with my safety without my devices, I would not be surprised that I stop wearing my cochlear implant.
It is weird knowing that I am inclined to stop wearing it. Considering I love learning sounds and it has provided an easier path to education and working. I have learned that me accommodating everyone for access is not sustainable. There is flexibility and then there is doing all the work just to get minimal access. Maybe if society is accessible, I would find joy in my cochlear implant again when the next problem does not take over my life.