My story sounds terrible if I tell it the wrong way. Here’s the wrong way: “I hid a disability for over twenty years.” Yep, terrible. That’s not what happened to me, although the bare facts will make you think so. There was a day in the 6th or 7th grade when I was sitting at lunch in the school cafeteria, talking to a friend, and I suddenly realized that I wasn’t hearing what she was saying. I looked around me slowly and realized that everything sounded slightly different—almost like I was underwater. “I’m imagining things,” I thought, and put it out of mind for a while…until I was 34 and took myself in to an audiologist to get tested. The test showed that I had moderate loss in my right ear and severe loss in my left ear. Just before the test, I told the woman administering it, “It’s probably nothing.” I remember imagining that I’d be embarrassed to find out that I was fine and only being paranoid about my hearing. Suddenly, I had a diagnosis far worse than I’d ever expected. On top of that, I knew that this is how my hearing had been for over twenty years, and I didn’t know how to explain that to anyone without feeling absolutely crazy.
I have to emphasize that I did not actively hide my hearing loss; I just let everyone convince me that it didn’t exist. Over the years, I’d notice this or that instance when it seemed that I couldn’t hear as well as others could, and occasionally, I’d mention it to someone. The response was usually one of reassurance: “Oh, her voice was really quiet,” “Yeah, the sound system was bad,” or “I could barely hear too.” The reassurance worked. It was as if I was occasionally telling people, “I think that the sky might be turning green,” and they’d shake their heads and say, “No, no…don’t worry. It’s still blue, silly.” And then twenty years later, we’d all discover that the sky had been turning green the whole time! Of course I’d have believed the simplest answer—the one that didn’t make my world suddenly different. And of course everyone else would’ve believed that answer too. I seemed so normal. Of course the sky was blue.
I assumed that my hearing was fine most of the time, even though on a subconscious level, I really was compensating for what I couldn’t hear. If you say “what?” too many times, people get tired of talking to you. Some people even shout or get angry. I found ways of avoiding that sort of thing—picking up on key words, using context clues, and meditating on rhymes. In college, as I took notes, I’d leave blank spaces for the words I didn’t catch and use the back side of my notebook pages as scratch paper for the sounds that I would have to figure out. I didn’t realize that I was playing phonetic “Wheel of Fortune,” piecing together sounds that I’d only half-heard. I just thought that college was difficult and that I was doing my best to keep up. I didn’t give my coping strategies a second thought. Neither did anyone else.
That’s why, after my diagnosis, no one believed that I’d had this hearing loss for very long at all. Someone would have noticed! How could I possibly have gotten a PhD and tenure track job as a professor with untreated hearing loss? No, no…the sky had been blue all along and only recently started to change. I let everyone convince me once again that I hadn’t had hearing loss for very long…because if I admitted to having this loss for 20+ years, that would make me some kind of fraud or loon. It would be an indictment of everyone I knew. How could they not have noticed or taken me seriously when I brought it up?! There were too many negative consequences to believing that I’d had the hearing loss this whole time. Still, I couldn’t deny the truth. The reason I’d finally gotten tested was for the relief that comes from admitting that you actually need help with something—that you’ve needed it for a while—that you’ve been through something. I only got part of that relief because I didn’t feel like I was allowed to admit what I knew—that I’d had this hearing loss for over two decades. I was overwhelmed with even more reassurances that I was “normal,” and I felt that I had no other options but to give in to those reassurances.
At that point, my mind split into two opposite perspectives on their own separate missions. On the one hand, I was someone who believed that I’d been struck with a sudden, alarming disability that I had to figure out. How the heck did the sky turn green so quickly?! What will life be like now? Will it get worse? Can I change it? I had appointment upon appointment, trying to figure out the source of my problem. Two of my cranial nerves were enlarged, but why? I went on steroids and saw a rheumatologist. There were nothing but dead ends and unanswered questions on the medical front. On the other hand, I was someone who knew that I’d had this hearing loss for years, and I started contacting every last friend or ex-boyfriend that I could think of from my earlier years, asking them if they could remember any times that I seemed to be a little deaf. If I could just get someone else to remember a green sky—a witness, I wouldn’t feel so crazy. No help there either. Essentially, I was doing what I’d done for decades—looking to other people for explanations of what had been happening to me. Today, I won’t let anyone tell me what happened. They don’t know, and I shouldn’t expect them to. Of course, when you’re turning to everyone else for answers about your own hearing loss, they’re going to let you down.
I’m starting to discover my own answers. Yesterday, I went in for my second MRI, just to keep an eye on my brain to see if anything had changed since my diagnosis. The technician and I were chatting it up as he put in my IV. Suddenly, he looked up from his chart, alarmed:
“You wear hearing aids?! Do you have them in right now?”
“Oh, no. I took them out and left them in the locker because they have metal batteries.”
“But…we’ve been having this long conversation, and you have EAR PLUGS in! Most of the patients can barely hear me when I try to talk to them. You have your hearing aids out, these ear plugs in, and you can still hear everything that I’m saying?!”
“Yeah, pretty much.”
I’m an adapter. That’s my best explanation for why my hearing loss has been the way it has been. I adapted, and I did it well. Kids are especially good at learning new patterns of language. If this happened to me when I was 12 or 13, no wonder I learned how to pick up on vibrations, expressions, contexts, etc. One of my favorite hobbies in high school used to be sitting at the stereo, with a CD case open to the liner notes. Almost every song was gibberish to me at first. I’d stare at the lyrics until the words on the page matched up with the sounds in my head. It would take a while, but soon I could actually hear the words, every letter enunciated. My brain trained itself to fill them in. I’d spend 3 hours at a time at the stereo, just teaching myself to hear.
I’m now in my next phase of adaptation. Instead of using all of my subconscious conversational tricks for keeping up, I can say things like, “Could you repeat that? I’m hard of hearing.” I can turn up my hearing aids. I can ask for captions. I can talk to other hard of hearing people and get listening tips. The one thing that I never say is, “I’m sorry.” I’m not at all ashamed of being hard of hearing. Sometimes it’s frustrating when you realize that you may seem rude to someone who doesn’t know your situation. I had to confront that fairly soon after my diagnosis. I started to be more aware of daily misunderstandings that I’d have, and I would get flustered. An outsider might see this and think that my hearing loss is fairly new, but it’s been like walking a tight rope and suddenly finding out that there’s no net underneath. You start to wobble once you realize how hard it is to do what you’re doing. It will never be easy. I’ll always face some challenges, but I know deep down that it’s never my fault, and even if I do have misunderstandings with people, that’s all they are. It doesn’t mean anything bad about who I am.
In fact, who I am is pretty amazing. My husband says that people like the way that I look at them and the questions that I ask for clarification in conversation, even when they’re unaware of my hearing loss. He says it’s endearing. At the very least, he thinks that it is! When I teach, and my students raise their hands, I run across the room to hear what they have to say, and they giggle that I get so excited. My hearing loss has made me a better listener. It’s such a part of who I am. If scientists ever figure out a way to fix what went wrong in my nerves, obviously, I’d welcome better hearing, but if I could go back in time and avoid having hearing loss, I don’t think I’d do it. I wouldn’t be me without all that I’ve had to adapt to.
I’ve made lots of efforts to reach out and find communities of hard of hearing people online, which has been a huge help. Mostly, it’s helped me see the gains that loss can bring. I attended the Say What Club annual convention this year and found that everyone that I met had a tinge more individuality and empathy than your average person. There’s something about the experience of hearing loss that teaches you not to take communication for granted. These were all kind people who had (some over several decades) been reaching out to their peers online and flying across the country to see them when they could. These were people who valued each other, deeply. Loss can do that for you.
I won’t be asking you to tell me what happened to my hearing, and I won’t be telling you some awful version of what happened either. Truly, I’m proud of my ability to adapt. I’m not hiding. I never was. I’m just continuing to find better ways to listen, especially to myself. For once in my life, I can look at the sky and tell, not ask you what I see.
Kimberly is an Assistant Professor of English at a large university in Texas. As a former professional actress, she occasionally directs student plays. She lives with her husband and cat and enjoys cooking, music, and exploring nature.