My Vanishing Ear

March 3 is World Hearing Day. In recognition of the World Health Organization's World Hearing Day campaign, The Hearing Journal is sharing a patient narrative as a reminder of audiologists' first priority—the hearing health of their patients. Kate Braid's story is a poignant recounting of the fear, frustration, and journey to acceptance that so many patients with sudden sensorineural deafness experience.www.shutterstock.com. Patient perspective, World Hearing Day, idiopathic sudden sensorineural deafnessMost people, when I tell them I am profoundly deaf in one ear, nod knowingly and say, "Ah yes, all those years in construction." But it's not so simple. When I left construction in 1995, my hearing was fine; one of the bonuses of union work was a truck that regularly came around to job sites to test our hearing. When I put down my tools, the hearing in both my ears was excellent. Then one morning in February 2002, I woke up dreaming I was underwater. Even when fully awake, the feeling that my left ear was full of water stayed with me. I couldn't hear properly. I rubbed the ear, clapped the left side of my head with my hand several times, yawned over and over, still that feeling of water stayed with me all day and I felt a bit off balance. The ear irked me. What was going on here? When I went to my teaching job the next day, I couldn't hear my students properly because of the noisy overhead fan I'd never noticed before, and I seemed not to be able to pick out what part of the classroom they might be speaking from. "Just a little cold in your ear," my mother said on the phone the next morning. "It will pass in a day or two." But it didn't pass. It got worse. The first two times I went to my primary care physician, he looked in my ear. Nothing. He prescribed antibiotics, but those made no difference at all. The third time I went, I was truly worried. My regular doctor was away, so the locum looked in my ears, then held a metal tuning fork up to my ears, right, then left. The sound was clearly different. When he balanced the fork on the bone behind each of my ears, again, it was different. "I think you better get that tested," he said. He looked worried. A week later I saw an audiologist. I'd never had my hearing tested this thoroughly before. In the middle of her office, as if plunked there by some construction giant, was a perfect little metal cabinet, a box with a door in it. It was about four feet square with a large window on the audiologist's side. I quickly realized by the strange sound quality when the door shut, that this little room was soundproof, padded with something soft and silver. Inside was one chair and a pair of headphones the audiologist asked me to put on. She went out, closed the door, and immediately reappeared through the window, sitting down at her desk in front of a console I'd vaguely noticed when I walked in. She put on her own headphones, twiddled some nobs and her voice very clearly in my ear said, "Can you hear me?" I nodded, a little unsure about all this, and she explained she would play a series of sounds in each of my ears. All I had to do was tell her when I stopped hearing the sounds. This should be easy, I thought. So, we begin. First my right ear, the clear, un-waterlogged ear. The sounds start loudly, then quickly fade, and I raise my index finger when I can no longer hear them. All very straightforward, practically boring, until she gets to my left ear. Then I think she's slowed down in bringing in new sounds, and she takes them away more quickly. In fact, a few times I have to look at her to see if she's doing anything at all. Maybe she's been distracted, forgotten me? But, no. A quick glance confirms she's still there, bent over the monitors. I know by now that something is wrong. Why is this ear taking so much longer? I cheat. I begin to watch her hands, to see when she turns knobs or pushes buttons, but she's cleverly covered them so I can't see what she's doing, or when. Suddenly her voice comes in clearly. "I'm now going to say a few words and I want you to repeat them back to me." No sweat. Again, she starts in my good right ear—soldier, top, tone—and I repeat them back, confident I have them right. Then the volume dips and there are different words but I'm certain I get them all. A third time, still quieter. But now a strange thing happens—the sound in my right ear stops and her voice is in my left ear but there's that water feeling again, and it's hard, really hard, to hear the actual words. It isn't a problem of volume exactly. I can hear the loudness but not the letters, if you know what I mean. It's simply sound. My heart has started pounding. I suddenly realize I'm hunched over, my stomach taut, head bent, arms pulled tight to my sides. I straighten, take a deep breath. This is very, very important. My hands are clenched into two fists, and I open them wide. A few minutes later they're tight again, but I don't care anymore because by now the audiologist's voice is so faint, so muffled. Then it's over. The audiologist is opening the door to my little cabinet and waving me toward a chair. When I'm seated, she pulls her own chair close and shows me a piece of paper with a graph on it. At first, I can't hear anything she's saying, I feel so addled. I take a deep breath. She's pointing at the graph. "This is your right ear," she says. "You see how this line is fairly straight. You have perfectly normal, even above-average hearing in this ear." I don't think ahead, I don't let my eyes drop to the next graph where the line looks very different. She's so calm, so matter of fact. "This is your left ear," she's saying. "You can see how the sound falls off." This thin black line that represents my link to the world, to my partner's voice, to music, to bird song, this line that clearly starts at a much lower place on the graph than the right ear, then dives even further. No wonder my ear has felt full of water. Now the audiologist is looking at me. She's saying something but I've missed it. She says it again. "I think you should go to an ENT," she says. I frown. A what? "An Ear Nose Throat specialist," she repeats. "Immediately." I freeze. I want to smile, to cast it all off lightly, her obvious alarm. But she hasn't actually said anything bad, has she? She hasn't actually said I can't hear. When I ask, she just repeats it. "An ENT. Immediately." APPOINTMENTS, APPOINTMENTS, APPOINTMENTS I thank her and leave. A few days later I'm at the office of an ENT specialist. Again, I sit in the little silver box and again the sounds are faint and far away in my left ear and then I sit in front of the doctor with the graphs between us. Maybe now someone can tell me what's going on. No. When he's finished, I stand outside his office door, in shock. What does he mean, they don't know what causes it? That he can't do anything about it? What kind of medicine is that? Over the next few days, if anything, my left ear feels as if it's settled into some deeper place, fathoms under ocean's surface, hiding there. A week later, I go back to the ENT. But when she enters the exam room, she doesn't talk or ask me anything; she just looks for a box of Kleenex. That's odd, I think. Wouldn't she'd blow her nose before coming in? But she gives the Kleenex box to me. I take one. Is this some new therapy? The new ENT takes a deep breath and says, "You have what we call idiopathic sudden sensorineural deafness. We see about ten people a month who have it, more women, more in the winter time. We think it's caused by a virus but we're not sure. It's permanent hearing loss. The only possible treatment is a shot of…" (she names a drug starting with "p," prednisone?) "…within three days of the onset of symptoms, but even that doesn't usually work. There's nothing else we can do." She stops here, as if I'm supposed to say something, supposed to say, "Thank you," but she's only taken a breath, she's still talking. "It's very important, with any kind of deafness, that you be aware of safety issues. We need two ears to locate the source of sounds, so when you hear a horn, or a siren, or a car coming as you cross the road, you'll have no idea where that sound is coming from. Also…." and on she goes but I've stopped listening, stopped hearing. I didn't hear anything after she said "deafness." You are deaf, I tell myself. Now I understand the Kleenex. I cry. On the recommendation of a friend, I went to a cranial--sacral therapy session. And my hearing comes back. I also visit my chiropractor. But within a month, the deafness is back. I phone my two alternative caregivers again and saw both within a few hours. I can feel a shift, and my hearing comes back. Then it goes again, a month later, but this time, even two visits to the alternative doctors doesn't bring the hearing back. So I go back—no, I storm back—to the ENT doctor, and this time I'm mad. I tell her that though I've been told this ear thing has no known cause and can't be cured, I've had it come back not once but twice. Something is still shifting so surely there's still hope for my ear and what is she going to do about it now? I finish with a flourish. There has got to be an answer. She looks at me and says, "How do you know your hearing came back?" I must have heard her wrong. She repeats it. "How do you know your hearing came back? I answer lamely, impossibly, "Because I could hear." It's almost a question. She's brisk and efficient. "Until we've actually tested you, we won't be able to confirm that." "But you did test it!" I say, excited. "Before, when it was bad." "We'd have to test it after it came back, when you thought you could hear again." But the reason I'm here is because it's gone again. It can't be tested now. And I stumble out, stunned. Now what? Slowly, I regather myself and eventually I'm furious. What now? I become an expert on alternatives. I find strange and unheard-of-before medicines and treatments and doctors that make my partner and my father roll their eyes. My mother only looks worried. "Do what you have to, dear," she says, and I cling to that. It turns out everyone's a doctor. Everyone has something to suggest. I visit a garostic chiropractor specializing in neck treatments and a dentist specializing in jaw treatments. But my hearing doesn't come back. The next time I go for another check-up with the ENT, it's yet another doctor—I've now consulted three or four. He is sympathetic. When I tell him about my hearing coming back twice with cranial-sacral massage, he doesn't say, "How do you know?" He says, "We try to be open to these things." This is a good sign. I'll take what I can get. He orders another test, this one to test the nerve in my left ear. But half-way through, the tester stops and practically rips the cords connected to my headphones, out of the console. "You're wasting my time!" she snaps. "There's nothing there to test!" I know this means, "No nerve." It means nothing even to test. I know that even the naturopaths say nerve does not regenerate. I leave in tears. REALIZATIONS AND ACCEPTANCES Life changes when you can't hear out of one ear. For one thing, as the ENT warned, you have no sense of direction. This was entirely unexpected. And the realizations—acceptances, I guess you'd say—didn't come all at once. They came in pieces, like small steps, like a diver going down or coming up slowly, in stages, so she won't get sick. I noticed when my hearing first went that I wasn't very good at telling which tree birds were singing from, didn't even think about it much until one night when my partner was in the bath. He called me in to chase out the wasp that was bumping loudly around the steamy little room. And I couldn't find it. I could hear it, buzzing loudly, but everywhere I looked, to the right, to the right, more to the right until I was virtually turning in circles—he wasn't. I was lost in my own bathroom. "I guess that won't work," my partner said quietly. And I had the sickening realization that since only my right ear was working, everything—all sound—now came from there. I felt ill. Later I'd get the story clearer, that in the same way that two eyes give us depth perception, two ears—by the tiny differences in the speed with which sound arrives—give us directional perception. The other advantage of two ears, apparently is depth perception. In a room full of other noises, a party for instance, one ear hears the background noise while the other screens it out, focuses in on the person you're talking to; both ears are working. But if you have only one ear, it must do all the work and, like any job, it can't handle it as well as two. So, at a party or a restaurant, all sound—every voice at the next table, every clanking fork, every tune blasting from the speakers, every word from your best friend—comes in at exactly the same volume. To one side. I was a teacher at the time, and at school they had to change my classroom. That exhaust fan I'd never even been aware of before, was suddenly so noisy that I couldn't hear my students over it. Not to mention that instead of having what I'd always enjoyed as comfortable semi-conversations as they called out responses to my questions, I now had to ask them to not only put their hands up if they wanted to say something, but to wave them around to get my attention, else I'd have no idea who was speaking, or from where. I went public. I made a small speech in each of my classes about what had happened, surprised to find it mildly shameful. I fought the shame, telling students they had to raise their hands from now on, and that if they approached me from the left, I wasn't being rude or ignoring them if I didn't respond; I simply hadn't heard. I asked them to approach me only from the right, speak to me on my right. If there was any background talk, I heard nothing but chatter; a small—very small—bonus of having yet another reason to ask for silence in the class and concentration on whoever was talking. I also told my colleagues at work. They only nodded, looking confused, as if I'd said I was taking a brief, inexplicable holiday. People kept forgetting, talking to me from the left. "Which ear is it?" friends asked over and over. One joked about staying on my "right" side. It was exhausting. I couldn't understand my sudden, -terrible fatigue until a friend I'd known for nine years revealed that she too was deaf in one ear, had been since childhood, and that deaf or hard-of-hearing people have to work much harder wherever there is sound. People forgot I was deaf—deafness is an invisible disability—and then thought I was rude, ignoring them, thought I was stupid for missing what they'd said. And I felt stupid, all those terrible gaps when everyone else laughed and I didn't get it, hadn't heard it. I had to watch lips and faces much more closely, had more trouble hearing when a face was turned away, or in darkness. I played with that word, "disability." Other people have disabilities. I can be kind to them, understanding, and walk away only a tiny bit smug that it was them, not me. Only this time it was me. There was no more walking away. Slowly, I got better at being deaf. I automatically slipped onto people's left sides with my good ear toward them, though often, I'm sure they didn't notice. I got so used to it that I'm now nervous when I see characters on TV or in movies talking on someone's left side. I learned to always sit at the far corner of any table, with my "good" ear to the group. I appreciated family and friends who soon learned to wait for me to pick my chair first. I learned to avoid parties. I also did my best to avoid dinner parties; the clashing of cutlery was now loud as cymbals to me—especially in restaurants. Restaurants were their own torture. My partner and I love good food, as do many of our friends, and eating out, trying different foods, different restaurants, had always been a special pleasure. Now slowly we began to ask only one other couple at a time to join us, so I could hear. I read enviously about a San Francisco restaurant reviewer who carried a sound level tester and gave volume reports as a part of the quality of any restaurant. And I got better at coping. At night if the neighbours were noisy outside, I only had to turn my "good" ear to the pillow and all was silent again; a built-in ear plug. Three years after my hearing went, I took a short course in the same room where I'd been teaching when I lost my hearing. It wasn't until the course was over that I realized I'd heard everything, fine, and the fan—that same fan—was now only a minor irritation. I got better at explaining, too. At first, I'd been angry. But now I referred to my non-hearing ear as "the silent one," and felt almost love for it. And nurtured, deep down, the thought that somehow my hearing was still there, regardless of the doctors and the tests. It was still there, somewhere, just unable at this time, or unwilling, to come forward. It was merely resting. I didn't tell people that. They would have said, or thought, I was just fooling myself, not able to accept reality. But in myself, I nurtured the small certainty that my hearing self was merely waiting. For what, I didn't yet know. But until it returned, I would be patient. I would wait. And listen. Thoughts on something you read here? Write to us at email protected.