You hear a voice, and you look up, and you realize everyone is laughing. Someone nearby elbows you, but you missed the joke. Are they laughing at you?
Yes, losing your hearing is a very lonely experience.
Have you ever travelled to a foreign country, or gone somewhere in your own where you don’t fully speak the language? Ordering food, paying for groceries, getting a cab, asking for directions… all these things become chores where the outcome is uncertain. Did I order the food I actually wanted? I’m I getting charged the right amount of money? I am going where I want to go?
Having severe hearing loss is a lot like this. You get some things, but you miss a lot of things, too. You have to ask people to constantly repeat themselves because they were talking to quickly or too quietly, and the words came out of their mouth sounding like gibberish, or a language you only half understand. The bigger the crowd, the harder it is to figure out who is saying what, or to even ask for clarification. It’s not just that the volume is lower, it’s that your brain can’t process sound in the same way. You can’t hear people in crowds.
Your whole life becomes some variation of “looking up to see everyone laughing at a joke you didn’t hear.” Somebody is responding to somebody else, but you don’t know anything about it. It really is like being a stranger in a foreign land. But unlike being a foreigner, nobody knows that you don’t understand anything. You speak the local language back to them, so the disconnect is invisible.
I have many memories of, as a child, looking up from a book or a piece of school busy work to see a teacher staring at me (maybe along with the whole class), looking angry because I didn’t follow some direction or I didn’t know where the class was in the agonizing daily round-robin reading session.
“Pull your card,” she says (we had a weird little color card system for behavior when I was in elementary school). Only later can I begin to piece together why she was mad, because she never tells me. Eventually, learned it was because I didn’t follow an order that I didn’t hear, and I didn’t even know that I didn’t hear it because I wasn’t looking at her.
It took me years to piece together that these experiences in school were the result of my hearing loss. I remember thinking the phone was broken because I couldn’t hear anyone on the other side, and later thinking I was stupid because I couldn’t figure out how to hear people over the phone. It turns out I was just deaf in my right ear, but nobody told me so.
Even after I knew I didn’t have normal hearing, it’s not like a nine-year-old can stop and explain this to an adult teacher who views any input from children as out of line. It’s like a constable in a foreign land yelling at you for not following the street signs, which are written in Chinese, but you can’t get him to tell you what the kanji mean.
Most of this flew under the radar because I was always in the 99th percentile on all tests. I had a very high IQ, so my behaviors were just considered behaviors, not the result of hearing loss. I was the quiet kid who always did well on the test, so I was always put in the back between the talkative kids as a buffer. When I got older and could advocate for myself, the most frequent response was disbelief.
Teachers straight-up didn’t believe me, and wouldn’t let me sit in the front, where I could hear them. If I ever had to ask an adult to repeat herself, I would get some variation of “clean the wax out of your ears!” (always a teacher’s favorite, for some reason). If you want a personal reason why I don’t like the Baby Boomer generation, it is because virtually every one of them in my life treated me in this way every time I asked for help, with a few memorable exceptions. Asking for an adult to repeat something was being smarmy or rude. You should pay better attention!
As an adult, I mostly figured it out. Turns out other adults, once I was an adult, at least, were a lot more understanding. My hearing kept getting worse, but I knew how to compensate. Yes, I still couldn’t understand much in a crowded party, but I could go out back, in another room, etc. Eventually, I was able to get a specialized hearing aid (ossiointegrated or “bone anchored” hearing system) that allowed me to circumvent my conductive hearing loss, and that improved life for quite a while, especially as the health of my left ear, my “good” ear, has steadily gotten worse. Tinnitus and damage to my tympanic membrane has made it a struggle to rely on that ear alone to communicate and operate in my profession.
Did I mention I’m a musician?
Now, though, my left ear is about as bad as my right ear. The other week, while I was rough housing with my kids, my daughter kicked me in the ear. It burst my left eardrum, and now I’ve lost about 25% of it. I can barely hear anything at all anymore, and audiology results confirmed this. I have to rely on my bone-anchored hearing aid entirely now.
This wouldn’t be so bad if the processor Oticon gave me in 2018 hadn’t died on me just before this event. Luckily, I have my original Ponto from a few years earlier, but it sounds substantially worse with fewer programming options, so I’m once again in that very lonely place where in many situations I have no idea what anyone is saying. It’s all a jumble, and I just have to guess as to what people have said to me. What’s worse is that the tinnitus in my left ear is all I can hear now when I take my hearing aid off. It’s very hard to get to sleep at night.
Right now my hope for recovery is very low. I had five tympanoplasties on my right ear and again as many other surgeries, with function only getting worse with each one. I don’t want to rely on hearing aids, even specialized ones, as they don’t sound like your real ears at all, but that’s where things are. Even twenty years ago, I thought the bill would eventually come due, and I would be too deaf to continue working in music. It got bad enough ten years ago that I had to take active steps to leave the business. The hearing aid extended that time, but here we are. I might be able to do some studio music, since I can blast my headphones and guitars, and even my classical guitar is very loud, but I don’t think I’ll be able to really perform again, certainly not unless it is in a very loud setting.
Luckily, I’ve spent the last few years building up a business as a writer, so check out a book before you go (I have one releasing this week!), especially my guide on creative productivity: