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Wishing Backwards: 10 Things I Wish I Had Learned Sooner

In advocating, Audiologists, captions, Coping Skills, deaf, Hearing aids, Hearing Loss, Life, Lip Reading, Partially Deaf, SayWhatClub, Speech Reading, Support on April 1, 2017 at 3:57 pm

By Michele Linder

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SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.

A fellow Connector asked, “What kinds of things should you have learned sooner?

For me, this question takes me back to childhood—growing up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.

I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.

That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?

On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observation.

10 THINGS I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after. I didn’t even know I could advocate for myself, nor was I aware I should.

I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.

I went through my entire public school education without many people knowing that I had a severe hearing loss. I was a good faker and I had a super power (I wasn’t even aware of) where my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.

2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me. Enough said.

3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss. I worked through many things to become a well-adjusted adult, but it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.

When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.

Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.

Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.

However, what I discovered to be most effective is to simply tell people what I need from them.

Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.

Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.

4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors. This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.

Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.

If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?

5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids. My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.

6. I wish I had found a support group sooner. I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.

At the end of each and every hearing aid trial, I would ask my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not equipped or even knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.

SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap, because there’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.

7. I wish I had been more confident in my hearing loss sooner. As a young adult, I let embarrassment and awkward situations deplete me. Had I not been a young mother (I had my first child at age 23), or an adventurous soul, I might have suffered more isolation and depression than I did. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.

8. I wish that I would have recognized sooner all of the things I’m really good at because of my hearing loss. I credit SWC for shining a light on how really good at coping I was, even as a kid left on their own, and I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.

9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary. Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand and would panic if a repeat was no help. This was a really hard thing for me to overcome, and it’s the same for a lot of people with an invisible disability.

10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything. When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.

I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day—I still have days where it’s just better if I stay home, and likely always will—however, I don’t think I would be as far along as I am if I hadn’t volunteered with SWC and as a captioning advocate. I started out volunteering because I wanted to pay forward what others in SWC did for me when I was down, but I soon realized I was helping myself far more.

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The Deaf Music Fan: Screaming Without a Sound

In Deafness, Hearing Loss, Life, music on November 15, 2016 at 3:08 pm

by Kimberly

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I have to feel music to hear it, and I mean that on every level. When I was around 12 or 13, I experienced significant hearing loss. The loss is moderately severe in my right ear and severe in my left. Due to the bullying that I was experiencing at school and among my own friends, I hid my hearing loss from everyone—family, friends, and even myself. I adapted to life and conversation without much of my hearing, and one of the ways that I coped with this was through music.

All through my teens, I would sit at the stereo for roughly 3 hours every night, feeling the headphones buzzing on my cheeks and the beat pulsing through my body. My taste in music had little to do with genres. Whether it was Hole’s “Rockstar,” Prince’s “Let’s Go Crazy,” or Jeff Buckley’s “Grace,” I was listening for the passion. I can sometimes pick out or guess at the words of a song that I first hear, but usually, it’s pretty fuzzy. The music itself all kind of blends together if I don’t listen carefully. When older people will complain, “It all just sounds like a bunch of noise to me!” I know what they mean. When you can’t hear well, music is noise. But passion has always kept me listening. If I can hear something behind the song, I will listen again and again until I truly hear the song itself.

The buzzing of the headphones against my face was essential. When someone would just play as song in a room with me, I was less interested. I needed it up against my face, vibrating, sending signals to my mind, activating my memory of how those pitches sounded. I’d taken classical piano lessons from the age of 5 up until I was 16. The transition from playing piano with perfect hearing to playing piano with hearing loss was a strange one. I could feel myself relying on the buzzing in my fingers to hear the full song that I was producing. When I finally got a driver’s license, I remember the joy of having a radio that could vibrate the steering wheel under my hands. Music was something that I could still feel.

My process at the headphones was unintentionally methodical. I would find a song that I loved and blast it several times, pressing the headphones against my face as hard as I possibly could. Only after I’d felt the song on a one-on-one level like that would I dare to pull out a lyric booklet. The second that I knew the lyrics, muffled mumbling would instantly transform into meaning. My brain would fill in the gaps that my ears had left, and I would suddenly hear every syllable distinctly. After the lyrics were down in my head, I’d still listen to the same song again and again. I’d start to hear layers and extra rhythms. I think that I actually coached myself on listening this way. Hearing became easier because I’d spent so much time concentrating on how to do it.

Music stayed pretty prominent in my life for some time. I was in choirs all through high school and college and even got a music scholarship. I worked in the summers at a record store and eventually as an actress in musicals. I was even in charge of sound on our tours! In one production, I remember having to turn the monitor on stage all of the way up and the rest of the speakers all the way down so that the other actors could hear the pitch that they needed to sing. I’d be standing in the back of the auditorium saying, “Really? You can’t hear that note? I can hear it all the way back here!” In retrospect, I was “cheating.” I could feel the note, and I was used to counting on harmonics to guide me to the tones that I was unable to hear. I fell in love with and married a guy who writes rock songs and plays in bands. He’s not only indulged but appreciated when I would point out all of the little details that he put into a song.

However, in the last decade or so, I’ve lost so many of my ties with music. When I moved into my own place for college, I no longer had the big heavy headphones, so I just stopped listening to albums. I never bothered buying an iPod with earbuds because it wouldn’t be the same. The songs were compressed—the high and low pitches removed. All of the sound around the notes, the harmonics and the vibrations that I feel in order to hear, were just gone. And those tiny earbuds would never buzz around me. The idea of listening to music on headphones in public was also deeply embarrassing to me. As a teen, my neighbor once teased me about seeing me through his window, pacing around the room, squeezing those headphones up against my face. Even in my car, listening to music became less exciting because production trends of auto-tune and oversaturated reverb muddied up the sound for me. It all “sounded like a bunch of noise to me.” Hearing my husband’s live music was the rare spot of light in a dark patch. That’s why, after we moved to a new city for my job, I was so excited when he decided to play open mics again. This happened just around the time that I had finally owned up to my hearing loss and gotten help for it. I was hearing my husband with my “new ears,” my hearing aids. It was exciting.

While out at a club, I encountered the musician Nina Diaz, hosting open mics. She would play these phenomenal sets of a couple songs and then graciously turn the mic over to a variety of musicians of varying styles and levels of experience. I was struck by her kindness but also her choice of cover songs. One night, she belted out, “Never Tear Us Apart” by INXS, singing the saxophone solo with a voice so powerful that I could feel it moving the walls. That feeling took me back to those days in my parents’ living room, playing that song over and over again and the sensation of the emotions behind the song echoing against my face. “I need some big headphones!” I told my husband, who then picked out the perfect pair for me.

Nina’s album, “The Beat is Dead,” came out a couple of weeks ago, and it has been such a positive emotional experience for me to listen to it as I used to listen to albums. While I lost my hearing at twelve or thirteen, that’s when Nina was joining her first band, Girl in a Coma. They were touring and signed to Joan Jett’s record label by her mid-teens. Three and a half years ago, Nina faced and conquered her alcohol and drug addiction and continues along the path of sobriety. Two years ago, I finally got my hearing checked and explained to everyone in my life that I’d been partly deaf all of these years. While the lives of a rock star struggling with addiction and a college professor struggling with hearing loss might sound pretty different, I sense that we’ve been through a lot of the same things—the lengthy fallout that comes after confronting demons, the shame that comes from having hidden something for so long, and the burden of being an accomplished person who’s struggling when everyone thinks she has it made.

Recently, Nina put out a lyric video for one of the songs that hits me the hardest, “Screaming without a Sound.” It’s emotional for me because this is the first time that I’m reading the lyrics, and they’re written in the second person voice, driving home the connection that I already felt with the song. It reminds me of the years of embarrassment and self-doubt that came with hiding my hearing loss but also my attempts to try to explain that to the people in my life once I’d confronted it myself. I’ve often felt that my explanations are impossible for anyone else to understand. Screaming without a sound is something that I feel pretty profoundly on a number of levels. Yet, at the same time, the fact that there’s a song out there about how I feel makes me think that I am understood after all. Maybe we all understand one another other on levels that we’re not always consciously aware of. Maybe art is what helps us make those connections. You can’t always explain it, but you can feel it.

I’m continuing to hear the layers in the songs—the way that she bends the note when she sings the word “care” in the song “Queen Beats King” or the unexpected digital bits of keyboard coming in near the end of “Trick Candle.” I get a weird kick out of discovering sounds. For most people, sound comprises music, but for me, the music itself is bringing the sound alive. In those moments with my headphones on, I feel like a part of me that’s been dead is alive again. Listening to music is a tiring process for me. People with hearing loss can all agree that listening fatigue is real. In the end, though, it’s worth the human connection. Art takes a lot of energy to create and even to consume, but it’s those moments when we make the effort to feel what others feel that allow us to transcend the senses.flourish1.pngKimberly 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.

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