People with hearing loss are unique. We occupy an awkward place in this world that spins on the sounds of people, nature, and machines that most other people can hear and understand. And it’s not always easy to explain what it’s like to be in that place.
We are set apart, defined—not by choice, not by faith, gender, color, political views or sexual persuasion—but by our inability to hear perfectly, or very well, or even at all. We don’t communicate in the same way as the hearing people.
Some of us embrace Deaf Culture. For some, our mild hearing loss is an irritant and frustration to be endured. It cannot yet cured, but communication has been made easier with technology and other strategies, just as mild chronic pain can be helped with pain relievers and physical therapy. But whether mild, moderate or profound, hearing loss affects almost every area of our lives and we struggle to describe its impact—not just to educate others, but to help ourselves make sense of it.
Sometimes we need a different way describe it.
We are like the filling in a sloppily-made sandwich. We keep falling out of the conversation. And a sandwich with no filling is just…..bread. A conversation that keeps losing somebody is just as messy and incomplete. You can throw a bad sandwich in the garbage—which is what people with hearing loss sometimes feel like when sidelined in a group conversation.
We are a human power bar. We’re plugged in to hearing aids, cochlear implants, neckloops, remote controls. We draw power and understanding from magnetic fields, WiFi, Bluetooth, sound waves, FM. We have to work at all this stuff, but hey, don’t think we’re not grateful! Especially if we can afford it—and as long as the batteries don’t die, electrical outlets are always handy and we don’t lose our charger cords. When these simple needs fail us, which at some point they always do, we’ve been known to throw hissy fits.
We are the night watchman—on day duty. Every day, hour after hour, we are watching, our eyes trained on people’s faces, looking for signage to fill in for the lips we can’t see and words we don’t understand. We look for captioning on TV, movies, anything. We are always on alert, visually drinking in actions of the sounds we can’t understand clearly.
We are the human echo maker. “How are you? What? HOW ARE YOU?” We don’t like making echoes, but if we need to hear something a second (or third) time, we must ask. And you should repeat. Graciously, both of us.
Our life is a masked ball. Can you tell by looking at us if we are getting what’s being said? You think you can, because we are smiling, nodding, perhaps throwing in the odd word or two. But are you sure this is the real us—and not just an invisible bluffing-mask that we wear any time we don’t have the nerve to admit we’re lost? Look closer. Ask.
We don’t hear sounds when they happen—yet hear sounds that don’t. This is the crazy-making stuff. If I’m not looking at my Hearing Husband when he clears his throat, I bite every time and say, “Sorry, what?” After 30 years, I haven’t figured out this throat thing yet? When we say ‘pardon’ to friends and family, we’re embarrassed when they reply, “I didn’t say anything. It was the TV (or the cats or the fridge or whatever).” Even worse is the dreaded response, “I wasn’t speaking to you.”
We are stormy weather. Inside our heads, thunder rolls, lightning flashes, electrical wires sizzle, gongs are gonged. This is Tinnitus, known as Hell to those who have it badly. It may not show on our face, but it can change us. We avoid noise. We may be anxious or feel down. We don’t yet understand the reason for this bad brain-weather or, more importantly, why someone can’t make it stop. Umbrellas don’t work.
We are miracle-seekers. And we know miracles exist because we’ve seen the change in those who have received cochlear implants or new hearing aids. We have seen the straightening spines in people who have met and been rejuvenated by other people with hearing loss and empathetic hearing professionals. So miracles can happen and we are waiting for the next one to happen to us.
This is life with hearing loss, our constant companion.
A good article. Some of it made me laugh because I am HOH, and yes, it is oh so true. It is very frustrating for both me and my wife. Sometimes I wish I had perfect hearing, or be profound Deaf. Being in between is hell.
Thank you, Phil. Being in between is sometimes more related to a sense of identity, rather than how we cope. I’m glad you liked the article. You can search for more articles on HearingHealthMatters about hearing loss issues that interest you by typing in keywords in our search box.
Phil, I have thought the same exact thing!!
Hearing loss is an invisible disability and at times it becomes difficult to explain your hearing loss to a hearing person. I will be 80 years old soon and glad I joined HLAA (Hearing Loss Association of America). Information and education is what many people with hearing loss need today. I have arthritis and use a cane and sorry to say I get more respect with the cane than with hearing loss. One main reason is people can see the cane but not my hearing loss. Gael thank you for all your articles.
I was born with a little over 50% hearing loss in both ears. I am now 55. I could relate to your article and hope more hearing people read it rather than non hearing. We could use more education to the general public on how best to converse with HOH. Such as, get my attention first before your start your conversation with me. Make sure I know the subject before you give me all the details. Let start training people how to treat us.
Should have added HoH are apathetic about their needs, or, their place in the scheme of things. There hasn’t been a single productive campaign launched that was based ON HI or HoH or deafened, it is all subordinate to to some cultural bent instead, we need to stand up and be counted for what WE are. ‘Hearing Loss’ what IS that about ? 9m Brits lost theirs and they still don’t know what happened to it….
How much is the bean hearing aids ,? With health insurance ? United health
Are there hearing loss groups that get together, not to discuss hearing loss but just to have people to hang out with. Why? Because they would understand one another and take care to communicate. It would be great to be with people who are patient in conversation, don’t mumble, don’t talk too fast or throw out a barrage of words that we can never follow. It would be such a pleasant change from the challenge of trying to make conversation with people who think everyone hears as well as they do.