I grew up not being bothered too much with the world around me; the more exciting stuff was going on in my head. I trusted that, if it was ever really important, my sister and parents would steer me in the right direction in the Real World ™ — and out of the way of any oncoming vehicles — meaning, I simply didn’t have to pay too much attention to it. In fact I was often so entranced by my daydreaming that, despite what “they” say about the ability to hear your name being said across a crowded room, I would barely register it even if said loudly, in repetition, five feet from my face (older sisters can be fun).
This was my superpower: the ability to turn the world off and on, with default set to “off”. I could read a book in a noisy room with the TV blaring and people laughing boisterously beside me. On trips, I never had trouble falling asleep, regardless of how thin may be the hotel walls. And I could “check out” of boring adult conversation at the dinner table, at will, fading into the background and letting my thoughts wander to much more interesting fare.
I was diagnosed with progressive hearing loss in my mid-thirties, after years of wrestling with the dark side of my power:
- Many would-be friends and close colleagues would remain vague acquaintances, after they would ask me a question out of “eye-shot” and I wouldn’t do them the courtesy of acknowledging them;
- Ordering food at a drive-thru and getting menu questions from restaurant wait staff would raise my blood pressure (although admittedly, “do you want fries with that” was pretty easy to pick up on);
- I stopped answering my phone because I couldn’t hold a quality conversation, and was too embarrassed to say “I can’t hear very well, would you please hold the phone closer and enunciate more?”.
I’ve learned, since coming out of the proverbial Hearing Loss Closet, that moments like these — and they were legion — led to my being widely seen as aloof, socially awkward, dysfunctionally shy, or just plain rude. But at the time, I wasn’t ready to see myself from the outside in. The prospect of deafness was too overwhelming, too frightening to think about. Would it cause me to lose my job? Would I lose my ability to listen, to be there for my friends? My superpower’s “on” switch was on the line. So in true cognitive bias fashion, I pushed the concept aside, I avoided the phone, I never went through the drive-thrus, I hoped against hope that I could just figure it out, by force of will. I wanted to believe that the doctors were wrong, that I had been misdiagnosed. That I could hear anything I put my mind to, that it was psychological, or a clump of wax that the doctors were missing in their exams … in both ears … Sleuth Wax …
You can probably guess how that worked out for me.
Fortunately, within a couple of years of my diagnosis, I worked through the shock and denial, and made my peace with the reality of the situation. I bought my very first hearing aids, and begrudgingly accepted that this was my new self; yet I still kept it a secret from all but a couple close friends and immediate family. I was going to fake being a hearing person as long as I could: after all, I had top of the line hearing tech and always kept my hair brushed over my ears (not to mention the units they make these days are unbelievably small and subtle). I could count the number of people who knew I was hard of hearing on my fingers, and wasn’t in a hurry to have any more uncomfortable conversations about my condition than was absolutely necessary.
Eventually, the continual progression of loss of sounds and the limits of the available technology caught up with me. I was leading a small team of contract administrators at the time, in a cubicle environment with lots of ambient noise and obstructed views (the hard-of-hearing person’s perfect Hell). My leader called me into his office and shared the bad news: almost everyone on my team had expressed difficulty working with me — that they struggled to get my attention, that I seemed aloof and rude, and that in conversations and team meetings I seemed to not really be listening, as I would often respond to their questions and concerns as if they had said something completely different. They said it didn’t seem like I cared.
Well, frak. Deep breath. “I think I know what’s going on …” I began.
I didn’t have to talk very long before his eyes lit up, and he sat back in his chair, tension melting out of his face. Turns out that he had a close relative with similar levels of hearing loss, and now that I mentioned it, everything I was exhibiting suddenly made sense, and we had a lovely chat about how prevalent hearing loss is, and the struggles and benefits of having magical invisible noise-cancelling headphones on me at all times. Our heart-to-heart reminded me that this same thing I was desperately trying to hide is actually what has enriched my life so much as well. I had forgotten that this was my superpower, and with great power comes … yeah, it comes with that.
It took me a few more years to learn how to best to engage in “real talk” about my hearing loss — still learning, still getting comfortable, but on the whole I get a little better at it every time — but I’m so grateful for that initial exchange, and the decision to stop hiding that soon followed. And despite my fears that this would change my life for the worse, forever, being “out” has changed my life for the better, even (and in some ways, especially) my aimless worldwide wandering.
Ah, there it is: wandering! The actual theme of this blog. Thank you for your patience, and for trusting me to get us there eventually.
Now that we have arrived, I’m happy to report that in general, the world is full of kind people, and the occasional not-so-kind people. I have been pleasantly surprised to learn that conveying my semi-deafness to concierge staff, servers, hosts, and friendly strangers in my various travels has been an excellent litmus test, revealing which category person I’m dealing with at that moment. For the most part, I’ve been fortunate to interact with kind ones, who do their best to patiently answer my often ridiculous foreigner questions, ask a few of their own, and ultimately engage in super-fantastic cross-cultural connection.
My hearing continues to decline, and my relationship to my hearing loss continues to mature. These days, I’m focused on the next stage in this journey, which is to do more than just share that I can’t hear well, but to actually be part of the conversation about how hearing people can best connect with the hard-of-hearing, so it doesn’t have to be a barrier. I’m starting small, mostly in 1:1 conversations, and sharing some simple strategies that I’ve found work best for me — my “rules of the road”. None of them require even an ounce of sign language (ASL is amazing, but it requires that both people know how to sign, so it’s not a very practical suggestion), just a few small behavior changes. Here they are, in case you’re curious:
- Use “eye-shot” to get my attention. This is usually the first thing that comes up when discussing my limited hearing, often because I have just experienced the opposite behavior. Even people who have known about my condition for years need this reminder from time to time. Typical scene: I have been focusing on an email at work, or in the kitchen at home putting a meal together, or staring off into space while standing around waiting for an event to start — when suddenly I feel a sharp rapping on my shoulder or slap on my back, and turn to find a (often agitated) person claiming that they’ve been calling my name or trying to ask me a question. From behind. To me, the hard-of-hearing person. I understand the predicament — everyone responds to their name, right? I’m an anomaly. But I’m the anomaly that you want to talk to, so, this one’s important. Instead of getting frustrated because your usual tactic isn’t working, then invading my personal space (which makes me feel equally edgy), much better to get into eye-shot, then give me a wave until you catch my eye. Bonus points for doing it calmly and without exasperation, although I understand that isn’t always possible – I fully appreciate that this is outside of the norm, and I promise it does feel more natural with practice.
- Enunciate more; shout less. Despite popular belief, yelling is not actually all that helpful. I know, shocker, right? I jest, but there is a general misconception among hearing people that getting louder equals getting understood, because of the fact that it’s the opposite of mumbling. Unfortunately when I’m shouted at, that’s how I feel: shouted at. It also makes the shouter come across as angry and irritated. So even if the increased volume allows me to hear more of your syllables, I am overcome with a sudden desire to find the nearest hole and wait for reinforcements, and it completely sabotages the lovely conversation that we were trying to have.
- Keep a clear line of sight to your mouth. I don’t mean to make anyone feel self-conscious, but part of what helps me determine whether a particular consonant in a particular spoken word is a “p” or a “b” or a “t”, is to pay close attention to what the lips and tongue are doing (see #2). This is actually a brand of lip-reading, despite the misconception (there’s that word again) that lip-reading is the ability to understand every word without the help of sound. I’m not that kind of full-on lip-reader, I do, and need to, process sound — but the clarity of sounds I hear is “softer”, many consonant sounds are muted — so having the ability to see mouth movement is key. If you’re covering your lips (like holding your wine glass in front of your face, or resting your hands on your lips) and saying anything more than “How are you, nice weather we’re having”, chances are high that I will miss a portion of what you’re saying, and our communication will be the worse for it.
So that’s where I’ve landed as of today. I’m excited to continue to learn and grow and adjust, and squeeze as much as I can out of my superpower. I hope this has been informative and helpful — for yourself, if you have trouble hearing, and for your relationships with other people in your life who perhaps don’t hear quite as well as they used to (and may or may not be comfortable talking to you about that). It has certainly been cathartic for me to share about these experiences — this was my first foray into sharing my story publicly, and I’m glad for the opportunity.
Feel free to share your own experiences in the comments, if you’re so inclined. And if you have your own tales but don’t wish to share, I hope it’s a comfort to hear mine, and to know that you’re not alone. Thank you for reading.
8 thoughts on “Have Hearing Loss, Will Travel”
Your superpower was something that you seemed to be born with. I don’t know if it helps, but we did take you to see an audiologist when you were a toddler. The tests showed you had normal hearing at that time. Please share any hints on how to deal with understanding what people are saying while masked!
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Great suggestion! I’ll get some thoughts together for a future post.
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This is an excellent read, which I enjoyed immensely! Super helpful, and informative.
In describing your experiences, you help your readers to better understand the potential trappings of your superpower, and by sharing your “Rules of the Road”, you offer us some simple changes that we can make, in order to get around the barriers, and have a more enjoyable communication experience with everyone who shares your power. Brilliant work! I love it!
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Thank you for the detailed comment! It’s awesome to hear your perspective, and that you found something you could use.
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I’m wondering if you have seen the movie CODA (Children of Deaf Adults), and if so, what you thought of it. It’s obviously a different situation from yours, but related. Much of what you wrote is true for living with any kind of handicap (and I apologize if you find the use of that word offensive).
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I am so glad you shared this perspective on the common challenges of facing a degenerative condition – agree a million percent that many of these aspects are part of the equation regardless of the condition. I haven’t seen CODA yet but it is on my list. I will report back my thoughts – thanks for the idea!