What No One Tells You about Hearing Loss
By: Jan Wilberg
Tags: Cochlear Implant, Disability, Disabilitystories, Deaf, Hearing Loss

No one tells you that people will get mad at you if you can’t hear them. They will get exasperated, roll their eyes, and shake their heads because they think they’re talking plenty loud and you ought to be able to understand what they’re saying.

You’re just not trying hard enough. You can feel their judgment like sandpaper across your face. And, sometimes, because you know they’re yelling at you, you start to absorb the judgment. You aren’t trying hard enough to hear. You need to concentrate, focus, screen out the distractions. So you try harder, but it doesn’t work and, pretty soon, people just give up on you.

No one tells you that most hearing loss isn’t about loudness at all. If you have sensorineural hearing loss, like I do, making things louder only makes matters worse. That’s because the issue isn’t about decibels, it’s about the inability of the nerves in the cochlea to accurately transmit sounds to the brain. In other words, people can talk as loud as they want to a person with this kind of hearing loss but often what they are saying just simply will not compute. It’s almost impossible for a hearing-impaired person to explain: I hear you but I don’t know what you’re saying.

There are other things no one tells you. Audiologists deal with the intricate mechanics of hearing, both biological and technical. But they don’t say much about what will happen to your life — how serious hearing loss will diminish your confidence, damage your work and personal life, and make hash of your ego. Eventually, though, hearing loss makes you tougher than you ever thought you could be. It’s a long journey to that point.

Here are some of consequences of serious hearing loss. These aren’t hypothetical. I experienced all of them. I’ve had serious hearing loss for 15 years, mitigated three years ago by a cochlear implant.

You avoid people you can’t hear. In my case, this meant a lot of men friends got dumped; male voices were extremely hard for me to hear and men were most likely to get annoyed. I walked around them to get to the nearest woman to talk to.

You stop using the telephone. With serious hearing loss, it becomes almost impossible to discern disembodied speech, meaning no lips visible to read. You miss a lot if you never use the phone. I didn’t talk on the phone to my grown daughter living across the country for at least seven years. Maybe I’ll leave it to her to explain the impact of that. I can’t do it.

You dummy up in groups. This is one thing in a restaurant where you can sit quietly nursing a drink, it’s another thing in a meeting or a group where there’s something serious going on. You will miss whole, huge bags of important things. Where I sat at the end of our family table across from my husband meant that I heard none of the dialogue amongst our children or our guests. Nothing. I would take cues from him as to whether I should smile or frown.

You start to live in your own head. Because so much of the world is indecipherable, you just check out. You think your own thoughts, converse with yourself, live within a tiny, confined space where no one expects you to understand anything. And, this is the really bad part, you start to live there, in your own head, all of the time. You convince yourself that it’s comfy in there, cozy, safe, so you stay there. It’s kind of creepy when you think about it.

You feel immensely sorry for yourself. I remember walking out of meetings screaming in my head, “I AM SO DISABLED!” I looked fine, though. No one would ever know I had a disability unless I told them. Or they tried to talk to me. Even then, hearing loss isn’t a big sympathy magnet. Because, as you remember, people figure if they shout at you, they’re doing their part. You just need to try harder.

You put an enormous burden on the one person who loves you the most. That person, in my case my husband, is on constant interpretation duty. He or she becomes the translator of the world’s goings-on and is expected to never get upset or tired when constantly asked “what?” “what did he say?” But the translator can be resented if he or she oversteps, tells people that you’re deaf and to direct their questions to him or her. It’s a razor’s edge being a deaf person’s person.

The cochlear implant I received three years ago put me back on the planet of talking and hearing people. But even before it did, the long years of coping with hearing loss had made me very tough — strong if silent — and remarkably more compassionate about other people and their disabilities. I know what it is to be marginalized. I can sense it now like a vague natural gas smell in the air — people being left out, passed over, walked around. So I head right toward them. They see my cochlear implant receiver on my head and know I’m one of them. We’ve all suffered heartbreak, loss, loneliness, and survived. And we’re here to tell the tale of our triumph.