Reflections On Deafness

I had intended to make this post back on February 11, but other things got in my way and I pushed it aside. Between working on my latest novel (easy) and updating my resume (hard), I haven’t given much consideration to maintaining at least a monthly post here. So, let’s get that out of the way and take the time for a little discussion about deafness.

My story of deafness doesn’t begin with me; it begins with my grandfather. As a young boy, he began to exhibit hearing problems, and his Jehovah’s Witness father would often berate him, shouting at him to “clean the wax out of your ears, boy!” By the time he was in his teens, the hearing loss in his right ear was profound, but in 1930s rural America, there wasn’t much in the way of screening or help for him. He was drafted (for which his father disowned him) into the second world war, where his hearing loss was missed by the entrance examinations. He had told me his hearing in his left ear was good enough that he managed to stumble through the hearing test — not that they looked hard to begin with at that time. It wasn’t until he got sick in Japan that they found out about his deafness, at which point they discharged him from the army. As he got older, his hearing steadily got worse, but even in his 30s he was still able to listen to and understand the radio.

My hearing loss, by contrast, was very aggressive: by the time I was a few years old, I had profound hearing loss, with the prospect of being completely deaf by my teens. Before I hit puberty, I went through a series of treatments intended to arrest the speed of my hearing loss, which was of marginal success. My parents had tried to get me to accede to a cochlear implant in those days, but I steadfastly refused — I was terrified of surgery. Finally, at the age of 17, I finally gave in: I couldn’t communicate with anyone due to my deafness and those around me refused to learn sign language or use notes. I went under the knife and had a $30,000 procedure to install a $90,000 device that would be a “miracle.” It wasn’t.

Understanding cochlear implants takes a bit of nuance; there’s benefits, but with those come many detriments. In my case, those were made clear almost immediately after initial activation: you don’t get sound through the implant, you get clicks and buzzes. Nothing makes any sense and the first time is a huge letdown — I almost immediately regretted the procedure. But once you get one, there’s no going back; the surgery damages your auditory nerve, so you’ll never be able to use your natural hearing ever again. It took about 3 months after my surgery to actually “hear” things with it, and about 6 months before use became natural. It was about that time that I suffered the next setback: I became dehydrated and due to complications from surgery, suffered a blow out of my right vestibule system. What is that, you might ask? Good question!

We have what’s called a vestibule system in both ears; it’s an interesting little gizmo that regulates our sense of balance without needing visual cues, in addition to other functions. The particular mechanic that is used for balance is a bridge between the middle ear and inner ear and I suffered damage to this part. As a result, for a full week, I couldn’t move properly without getting sick and disoriented. After I had recovered, I found I had lost all sense of balance in my right ear; I could no longer close my eyes and maintain balance without starting to get dizzy. Like most people, I rely on the right side of my body for most day to day functions, which includes my sense of balance. It took some time to start to adjust to my left ear’s senses to retain my stability, but even today I rely upon my vision to remain stable.

After that first year, things got better and I became acclimatized to the implant, to the point where I couldn’t imagine life without it. I got my hearing back, so to speak, so life would logically follow with it — right? No. Wrong. There is no substitute for natural hearing — not yet. A cochlear implant gains back a lot of that missing sense, but it doesn’t give it all back. I still have difficulty understanding many people, and while their voices might come in clearly, the sounds do not always make sense. Sometimes it takes many repetitions before the words finally click and it all comes together. For sure, it’s better than it was, but it’s not a magic wand that suddenly fixes everything. This was especially true for the system quality throughout the early 2000s; the processors of the time, while more refined than they had been in the past, were still lacking significant capabilities. Using a phone or remote voice communications of any form were still an exercise in frustration, especially if the phone wasn’t a traditional handset type (for which most of the accessories were built for).

Still, it was good enough for college, and so I spent two years obtaining an associate’s degree with the implant. It was difficult, but I managed to stumble through it. College, however, was easy compared to finding a job: the economic downturn ruined just about everyone’s prospects in those days, to say nothing of a fresh graduate with a disability. If you want to get employers to instantly throw your resume into the trash, simply mention any form of disability and wave your employment prospects bye-bye. Even getting a simple job like pushing a broom can be an incredible challenge, though it was easier back then since you had more of a chance to get someone face-to-face. Today, it’s much harder: most employers rely on an automated system with automated voice systems to filter candidates, to say nothing of applicant tracking systems. Don’t have the right keywords on your resume, even though you might be perfectly qualified? Into the trash you go! Further, even if you do get through, they often wish to conduct informal interviews over a phone, which can be a challenge. If you ask for face-to-face, they might have an issue with that; if you do it over the phone, it’s often very easy to become error-prone, with many misunderstandings. In either case, it becomes very difficult to make it clear that deafness won’t be an impact on the job. It rarely is, unless someone wants to make an issue of it — sadly, many do.

My first job was working at a help desk, which wasn’t too bad, but my coworkers had issues with how I conducted business. Because I had difficulty using the phone, I would often take an issue and go directly to the person’s computer; my coworkers believed this was inefficient. They tried to force me to use the phone, which just didn’t work out. I eventually had too many issues with the personalities involved and so left after 2 months. It was a terrible job. I spent the next two years doing freelance work remotely, primarily website work of varying disciples, but this was a transitioning age: the field was becoming very competitive and the swarm of worldwide workers made it difficult to make a living. That came to a head when my internal implant failed, 6 years after installation.

It was an incredibly disheartening time when my implant failed; I had no health insurance, no steady employment, and without the implant, I was back to square one. As a trained IT technician with little real experience under my belt, in a downturn economy, how was I supposed to find work in my field where I wouldn’t be thrown out due to my disability? In an extremely fortunate twist, I had found out that my internal device had been subject to a recall upon failure, and the corporation that built it would handle all associated expenses with replacement. I would be OK — assuming I could find regular employment. But the story of my government employment is for another time.

In the end, it has now been more than 10 years since my last implant was replaced, which also makes it out of warranty. If this one should fail, for any reason, I will lose my hearing once again. And unless I can come up with $150,000, I will not get it back.

I write this because I see far too many people that believe a cochlear implant can fix deafness; I’m here to say that it doesn’t. It helps, yes, but there are many, many, many strings attached to it. So the next time you see a “wondrous,” “magical,” or “miraculous” video of “child’s first implant turned on,” know this: that child doesn’t “hear” anything but clicks and buzzes. It makes no sense to them and won’t for a few months. And for as long as they live, they will be a slave to that little machine embedded in their skull, drilled through and connected to their ear. And it won’t change anyone’s perception of them or their deafness.

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