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It is only when we silent the blaring sounds of our daily existence that we can finally hear the whispers of truth that life reveals to us, as it stands knocking on the doorsteps of our hearts.
– K.T. Jong
1. I can have peace and quiet whenever I like, simply by turning off my cochlear implant processor – this is particularly useful when a migraine strikes
2. Thunderstorms and other loud noises don’t wake me up in the middle of the night (and David’s snoring doesn’t bother me in the least!) because I can’t wear my processor to bed
3. My iPod brings the music right into my brain, via my processor, and makes me happy that I can still appreciate music I knew before I lost my hearing (and new music that I really work at getting to know)
4. I lost my hearing at the most opportune time in history – after the advent of the internet and text messaging – which has made communicating with others so much easier than it otherwise would be
5. It provides endless amusement when I repeat what I think someone said and it turns out that I was nowhere close to getting it right
6. I don’t use it often, but “the hearing impaired card” occasionally comes in handy, particularly with telemarketers who invariably immediately give up
7. Being one of only about 150,000 or so people in the world who have cochlear implants
8. Reading lips, a skill I learned after losing the hearing in one ear as a kid and then perfected once I lost the hearing in the other ear, really comes in handy, especially when watching professional sports!
9. The experience of losing my hearing showed me just how much I was loved by the people in my life and allowed me to easily weed out the people who were not worth the energy I wasted crying over losing them
10. Living as a hearing impaired person who normally “passes” for a hearing person made me realize that everyone – literally every person I come across – struggles in his or her own way, whether or not the struggle is evident on a day-to-day basis
This list was, perhaps not surprisingly, much harder to come up with than the 10 bad things. I’m glad I did it, though – reminds me of how lucky I still am.
Forgive me when you see me draw back when I would have gladly mingled with you. My misfortune is doubly painful to me because I am bound to be misunderstood; for me there can be no relaxation with my fellow men, no refined conversations, no exchange of ideas. I must live almost alone, like one who has been banished; I can mix with society only as much as true necessity demands. If I approach near to people a hot terror seizes upon me, and I fear being exposed to the danger that my condition might be noticed.
–Ludwig Van Beethoven
1. Almost always being literally the last person to hear about something
2. Poorly captioned television programs and DVDs (We’ve been watching all the West Wing seasons in order – the first 5 all had English subtitles; seasons 6 and 7 only have French and Spanish subtitles. They’re captioned, but on our big TV, for some reason, the DVD player doesn’t decode captions, so we’ll have to watch them upstairs on the other TV. I don’t understand it, but it pisses me off.)
3. People who assume I’m stupid when I tell them I have a hearing impairment and ask them to repeat what they said
4. Missing important PA announcements on the Metro or at the airport
5. Baby-sitting the Princess and Conductor after bedtime, wondering and worrying whether I’ll hear them if they call for me (This often results in multiple trips to the hallway outside their bedrooms, waiting and straining to hear something and hoping when I don’t that I haven’t missed anything. And this leads to worrying what I’ll do when it’s my own kids.)
6. Finding myself without batteries to my cochlear implant processor at rather inopportune times (You’d think, after 5 years, I’d never leave home without batteries, but because I don’t carry a purse or bag as a rule – except to work – this happens more regularly than I’d like.)
7. Not being able to locate the direction a siren is coming from while driving, and often not recognizing that the noise I hear is a siren until the police car or ambulance is already bearing down on me
8. That new (read: post-2002) music is, for the most part, just noise to me (This is probably the one that’s the hardest for me to take.)
9. The difficulty I have now in understanding people with foreign accents (This used to be no problem for me, and I’m sad that its become so hard.)
10. The sheer amount of energy it takes – particularly when I’m tired or sick – to focus on listening to and understanding what people are saying, especially in large meetings or settings where what’s going on is not captioned in any way (like at a play)
I’ll be back tomorrow with 10 good things! Happy 4th!
At first I was shattered . . . . As I became more comfortable with my deafness and learned more, I accepted it, made my peace with it, and tried to learn from it.
– from I’ve Lost My What?, by Shawn Lovely
April 29, 2002, 7:30(-ish) a.m.:
Something wakes me, but it’s not the alarm clock. I raise my head, only to discover that the vertigo that sent me to the ER last night hasn’t subsided. I lie back down and reach for the phone to call in sick to work. “It’s Monday,” I remember, “They’ll never believe me.” I put the phone to my ear and listen for the dial tone. Nothing. Confused, I hit the hang up button and try again. Still nothing. I notice that the light on the caller ID screen on the phone is on. The incongruity takes a moment to sink in, but then it hits me: The phone isn’t dead, I just can’t hear it.
That’s when I scream. And I don’t hear that either.
In the instant I realized what had happened to me, nearly everything I thought was true about my life – who I was, who my friends were, what my place was in the world – changed, and I had to learn it all over again. Growing up as a hearing person and then losing that identity was a surreal, terrifying, heartbreaking experience. There was a sense that I no longer had control over anything at all: If this, my connection to everyone and everything in my life, could disappear, could be taken away at random, then surely I couldn’t count on anything else.
In the early months of my loss, I fought sadness and anger so deep they scared me. No one could help me understand what was happening to me – there’s no medical explanation for it – and no one could fix it. My anger unleashed itself on unsuspecting store clerks or patrons trying to pass me in the aisle. “I’m sorry,” they’d say meekly, after I smugly informed them that I hadn’t gotten out of their way because I couldn’t hear them asking to get by, “I didn’t know.” I dislocated my shoulder three weeks later in May, then came out to the parking lot two weeks after that to find my car with a flat tire. Completely defeated, I sat down on the asphalt and cried until someone drove by and took pity on me. I had been given pain medication for my shoulder – Vicodin, I think – and more than once I wondered how many it would take to make me fall asleep and never wake up. I didn’t really want to die, I just knew that there was no cure for hearing loss and that I was not cut out to live in a world without sound, and I didn’t know what else to do. I even seriously considered checking into a psychiatric hospital at one point, because I figured that would be a place where I could be as crazy and as sad and as angry as I felt inside without being a burden to anyone because it would be their job to take care of me.
Even though I often tried to push everyone away, I thankfully never had to face any of this alone. I have had the good fortune along the way to be surrounded by a loving, supportive family and a few amazing friends, along with extraordinary medical professionals. My parents and Nate and the rest of my family never gave up on me, never let me feel like I was a burden to them, though I know at times I must have been. They also never lowered their expectations of me, which is not something I can say for everyone, and was really what I needed in order to hold on to the person I was. Aimee met me at the ER that morning and never left my side, and when I thanked her later for being there, she wrote (because I couldn’t hear her), “Where else would I be?” Karen’s house was the place I drove to when I needed to go as far away as I could and still make it back by dinner time, and she never turned me away, even when I showed up unannounced. That they – and many others – stuck by me, or took the time to get to know me, or didn’t run screaming in the opposite direction when they heard what happened to me means more than I can possibly say.
Sometimes people say, “You’re so brave,” or “I don’t think I could have handled it as well as you have.” I rarely think of myself as courageous, and people only see me that way because they think what happened to me is unbelievable. They ask, “How did you ever get through it?” I say, “You do what you have to do: you get up every day, even when it’s hard, and you take it hour by hour – minute by minute if you have to: Get out of bed now; go to the gym now; eat lunch now; read this book now. Then you go to bed and do it again tomorrow.” Eventually, it isn’t so hard to get out of bed, and one day you realize that life can still be good and that you want to be a part of it.
It took me more than a year to start feeling like myself again. My cochlear implant surgery in August 2003 went a long way toward helping me feel whole again. It gave me back music, which was more than I had any right to hope for, and makes it possible for me to understand my niece and nephew when they say stuff like “Peanut butter and jelly is my favorite vebgtable,” or sing Happy Birthday on my voice mail. It’s not perfect, of course, and every once in a while I still get mad that this is my life. Usually it’s a TV show that’s not captioned (or is captioned poorly) or someone on the other end of the phone who doesn’t understand the relay and hangs up on me. It still makes me angry that these everyday things aren’t just easy for me. I know, though, that there’s a reason this happened to me, even if it’s not clear to me yet, and so I try to be patient and compassionate. Mostly.
When I think of where I was six years ago today and in the aftermath of this thing that happened to me, it’s hard to recognize myself. So much has happened, and I know I wouldn’t be where I am today if I’d never lost my hearing. I don’t think I’ll ever get to the point where I’ll say that I’m glad that this happened, but I do recognize that good things have come out it, and maybe that’s enough.
Dread is the first and strongest of the . . . kinds of fear. It is that tension, that waiting that comes when you know there is something to fear but you have not identified what it is.
– Orson Scott Card
Imagine that you’re a perfectly healthy 25-year-old woman. You live on your own, hold a job, work out five days a week, and love music and books and spending time with friends. Normal, right?
Then imagine yourself on a Sunday. You wake up, make breakfast, then go to the gym for your weekly swim. Afterwards, you shower and head to the mall. You walk around for a while, buy a couple of books you’ve been wanting and a really great pair of shoes.
Later that evening, you’re relaxing with the Sunday night crime dramas. As you get up from the couch to get a drink, you feel light-headed. You were lying down and got up quickly, so you don’t think much of it. But the sensation doesn’t go away, and you realize it’s the same sensation you had one summer night three years ago: Whether you’re lying down or sitting up, you feel like if you laid your head back, you might not be able to lift it back up; you’re disoriented. You call your brother, because he’s the one who took you to the emergency room that night three years ago, and you ask him if they did anything for you then other than run some tests and send you home where you slept it off and felt fine the next morning. He says no, so you decide it’s nothing.
As the night wears on, though, the dizziness worsens, your head starts to pound, and you notice that the people on television are starting to sound very far away, and very high-pitched. Now you’re worried, because you lost the hearing in your right ear as a little girl, and the thought of losing the hearing in your left ear is unbelievably frightening. It’s now 11:00 at night. You call your brother back and explain your symptoms, trying not to cry. He’s in North Carolina, though, and can’t help you himself, but he wants you to go to the ER. You shouldn’t drive, due to the dizziness, so you call a friend to come get you. While you’re waiting, you page your regular doctor, who calls back and, after hearing your symptoms, diagnoses a likely inner ear infection and says to come see him in the morning. You decide to go to the ER anyway.
The ER is empty and you’re seen fairly quickly. The doctor asks for the symptoms, and looks in your eyes, nose, and ears with his little light. He’s clearly stumped. He can’t see anything but a small amount of fluid in your right ear, and he tells you to go home and take Sudafed to drain the fluid and ibuprofen for the headache.
You call your parents when you get home to let them know what’s happened, and what the doctor said. They tell you to keep them posted and that they love you. You turn out the light and go to bed, unaware that you’ve heard their voices clearly for the last time.
Courage is the discovery that you may not win, and trying when you know you can lose.
– Tom Krause
Ok, if Marlee Matlin can dance on TV in front of millions of people, surely I can sing karaoke in a bar in front of 30 drunk people, right? (Which would, hopefully, be a prelude to something more official and public.)
In all seriousness, I’ve never watched much of Dancing With the Stars, and I forgot to watch last night, even though I meant to, but I saw this video today, and it actually brought tears to my eyes. I was so proud of her.
And leaving aside the deafness issue, how hot does she look? She’s in her 40s and has 4 kids; I’m 31 and childless, and I wouldn’t look half that good in that dress. Good for her!
The heart must speak, and its search for the perfect outlet is the premise of all artistic expression. When words are insufficient or impossible, and physical gestures fall short, music is a language by which the soul can be heard. But when music itself is unattainable, the silence can be more than one spirit can stand.
– from Music to My Ears, by Timothy White
I was watching Once last weekend – have you seen it? It’s amazing. It’s a love story about an Irish street performer and a Czech musician, and it’s told largely through the music they write and perform in their roles. If you haven’t seen it, you are really missing something wonderful.
The day after their first meeting, she takes him to the music store where the owner lets her play the piano for an hour at lunchtime. He gives her the music to his song, Falling Slowly (the Academy Award winner for best song this year, by the way). He teaches her the basic parts of the song, then he begins to play on his guitar, and she joins him on the piano. He sings the first verse, and she comes in on the chorus, and it was at that point that I started to cry. I just sat there watching in the dark, listening, with tears streaming down my face. The thing was this: I could tell that the song was gorgeous and full and beautiful, but I knew I wasn’t hearing it all, if that makes any sense.
Ever since I lost my hearing, music isn’t as rich of an experience for me as it used to be, and that makes me unspeakably, and sometimes unbearably, sad. Most days, I’m good – this is just how I go through life now, you know? It is what it is, and it doesn’t do any good to lament what I lost. But there are moments every once in a while where I just get blindsided by the heartache of growing up as a hearing person – someone whose life was enveloped in music, who used to play instruments and dance, and more than anything else, sing – and being reduced to this.
I haven’t sung in public since I lost my hearing because I’m afraid that I won’t be on key and I’ll embarrass myself.* Some days I’m sure I could do it, after almost 5 years with my implant, but I never take steps to try, because if I fail, I’ll be devastated. Once, about 9 months after I lost my hearing, a friend asked me what I wanted to do for my birthday. I told her I really wanted to get people together and go do karaoke, but that I was afraid because I was never sure if I was on pitch when I sang along with the radio. She looked at me sadly and said, “You aren’t.” She said it gently, and she meant well, but it broke my heart then, and it’s always in the back of my mind when I think about trying now. I still sing – my nephew has his own theme song that I made up for him, the Princess loves to hear “Winnie the Pooh” (House at Pooh Corner, by Kenny Loggins), and I sing out loud to myself when I’m alone – but singing for yourself is a distinct experience from singing for an audience, and I miss that so much.
And I can’t just turn on the radio anymore, because without context – the title of the song on my iPod screen, for instance, or knowing the order of tracks on a CD that I’ve owned since before I lost my hearing – new (meaning post-2002) music is mostly just noise to me. I’m am very much out of the loop when it comes to whatever’s hot these days. I’ve downloaded a fair number of songs I didn’t know before I lost my hearing, but to recognize them without cues requires finding the lyrics online and listening along multiple times. Even then I’m never sure if the melody I hear is the true melody of the song.
So this, you see, is the great sadness of my life. There’s nothing like music, is there? I read The Heart is a Lonely Hunter, by Carson McCullers, several years before I lost my hearing, and looking back over some of the quotes I copied from it makes my spirit ache a little bit:
She had just drawn whatever came into her head without reason – and in her heart it didn’t give her near the same feeling that music did. Nothing was really as good as music.
I’ll say.
But all the time – no matter what she was doing – there was music. Sometimes she hummed to herself as she walked, and other times she listened quietly to the songs inside her. There were all kinds of music in her thoughts. Some she heard over the radios, and some was in her mind already without her ever having heard it anywhere.
I copied that down when I read it because I think it describes me to a tee, even now. And I do still have music – anything I knew before I lost my hearing is mostly readily available in my memory, and when I hook my implant up to my iPod, the music fills my head and I can still hear that opening guitar riff from Boys of Summer or the organ on Hear Me in the Harmony, the clarity of Celine Dion’s voice (shut up; I’m a sucker for a power ballad) or David Gray’s wavering tenor, the perfect harmony on the chorus of When I Said I Do or the gorgeous piano melody of Mandolin Rain. It makes me cry and uplifts me all at the same time, because just knowing that music even exists at all is really something, isn’t it?
* Edited to add: I just remembered that I have done karaoke once since I lost my hearing, in law school, but I didn’t sing by myself, so I don’t count it.
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