A Hearing Loss & Late Deafened Blog

The Perseverance of Sound: Part I

In Deaf-Blind, Deafness, Hearing Loss, Musicians with Hearing Loss on February 21, 2017 at 3:59 pm

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert who shares his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him. 


By Justin Krampert

“Music is about communication… 

it isn’t just something that maybe physically sounds good or orally sounds interesting;
it’s something far, far deeper than that.”
~ Evelyn Glennie

Emerging into the world at eight weeks premature, 2lbs. 2oz, my miniscule body could literally fit in the palm of your hand. I was supposed to be born on Halloween (of all the nifty days!), but I was a Leo instead of a Libra. The universe obviously had a much different scheme in mind for me. Not escaping unscathed, my sight was permanently affected by Retinopathy of Prematurity (ROP). I had a Patent Ductus Arteriosus (PDA) surgery to repair a hole in my heart, which left me with a long, gnarly, Frankenstein-esque scar up my torso’s left side. And lastly, the very small bump atop my skull reminds me of the life-saving yet ototoxic drugs that were administered.

One of my earliest hearing loss memories was at 2 years old, climbing the re stairs at hospital, and then having a small room of intimidating doctors put a strange cap with wires and contraptions on my head. But, it was painless and over before I knew it. I was already wearing glasses, when at five (or was it 4?) years old, I received my first hearing aid…a Siemens BTE for my left ear (which had a mild-severe ski-slope, high-frequency hearing loss), and my right ear, which only had a mild loss, did not get a hearing aid. I remember the audiologist being a nice lady who sat me in the tiny booth with headphones, listening for the beeps and words. The day when she put the hearing aid on me, she fiddled with the volume and tone controls, saying, “BAH, BAH, BAH!” into the microphone as she set levels. My mum secured the apparatus to my glasses with a piece of yarn, every day. Thus began the foray into semi-bionic living. With my new, “ear”, elementary school included speech therapy to help me pronounce my ‘s’ and ‘sh’ sounds, and ‘m’ and ‘n,’ which sounded exactly the same.

At nine years old, we began learning instruments in music class. The music teacher, however, was not much of a empathic person, and once, when I tried to advocate for myself by asking if I could move closer to see and hear better, she scornfully sighed, saying, “Oh, Justin, relax!” Up unto this point, apparently, I had been a carefree, little self-advocate, politely asking people to please face me when talking so I could see their faces. I withdrew from speaking up for myself for many years to come. I did not ask for closed captions, so I know I always missed parts in shows and movies. It was the first time where I began to form a philosophy in life: I realized that we should want to help people (and their accommodation requests) when we can, doing so genuinely. I also began feeling ashamed of my noticeably different ability status and wanted to hide my hearing loss. My first formal music experiences were disheartening ones, unfortunately, and even my parents decided for me that if I wanted to try guitar lessons at a young age, that my hearing loss would impede learning or enjoyment.

So, I went through elementary and then middle school, not wanting to play anything remotely music-related. I did however, begin to find music that I could enjoy, close my eyes to, and felt completely free to allow myself the catharsis of my imagination whilst listening. I had my own little cassette Walkman, and would put the volume up on the old foam headphones so I could hear it. My eclectic tastes in middle school ranged from the first Enigma album, to Metallica, Nine Inch Nails, to even some rap. Respectively, I enjoyed the ethereal textures, the distorted guitars and winding riffs, the visceral tones, and the piano parts and drumbeats. I always had difficulty with understanding lyrics, so the instrumental part of the music was and is still, the first thing that catches my attention.

Middle school years are described by most as being pretty rocky, and my obviously thick glasses and ugly hearing aid made me a target of continuous ridicule. Back in 3rd grade, I got a Siemens ITE hearing aid, as my parents felt it would be less noticeable, but with my very short hair, it just stuck out even more. My hearing took a noticeable drop, but I denied and tried to fake hearing better. In 7th grade, I made the choice to secretly stop wearing it, as it would squeal and I would be totally unaware of its high-pitched feedback. My only indication of it malfunctioning was classmates looking at me, pointing and laughing. Luckily, I had Dawn, a fellow classmate, to gently tap me on the shoulder and point to her ear discreetly, so that I could fidget with it, while she chided others for their immaturity.

Interestingly enough, despite trying desperately to hide my hearing loss during my middle school years, I found an ASL class that met weekly, which I attended for a few years until it disbanded. I enjoyed it immensely, and even earned my ASL interpreter badge in Scouts. At the time, I knew I wanted to go into some kind of helping profession when I grew up, but despite even being discouraged (because of my low-vision and hearing difficulties) from becoming an EMT or Paramedic by some family friends, I still wanted to find a way to help others. I was quite inspired to actually go to college at Gallaudet, and become a teacher of the d/Deaf. Then music found a way back into my life as I was going into high school…


10 Practical Tips for Tinnitus

In Uncategorized on February 7, 2017 at 7:22 pm

By Chelle Wyatt

Tinnitus is on my mind today and that’s because I’m off the grid, in the middle of nowhere at my parents house. How quiet is it out here? Many years ago after they finished building their house I came to visit. We were on the porch, everyone talking and I kept hearing a noise. It was indescribable and it drove me nuts not knowing what it was. I stopped the conversation finally to ask “What is that?” And of course everything sounded normal to them so it took a bit to pin down the noise I wanted. “There! That noise,” I yelled when I heard it again. My mom said, “You mean hummingbirds?” I was aghast. I could not believe how loud they were. At home I couldn’t hear them due to traffic or city noise so I guess I forgot what they sounded like.  
Today it’s early February so isn’t porch time yet. My parents aren’t listening to the radio as they normally would avoiding today’s political environment. None of us watch TV much either so it’s quiet in the house too. I hear my tinnitus all too well. My tinnitus sounds like cicadas, crickets and has a high pitched squeal 24 hours a day , 7 days a week. Luckily I habituated years ago so it’s not driving me crazy but it is noticeable.  

Memories of tinnitus are drifting in and out. I remember when tinnitus struck back in 1987 and I was told by the ENT to go home and learn to live with it. He gave me no other suggestions nor information. I couldn’t sleep and I was a zombie during for days at school. Every night I laid awake hating the sudden invasion and wished I could just die. Only with much determination did I make it through that time period and was able to push tinnitus to the side.

I didn’t think too much about my tinnitus for many years, it was there but in the background only. Then working as a hard of hearing assistant, I was asked to edit a tinnitus presentation into a class. I spent weeks organizing the information and researching tinnitus on the internet. I hadn’t heard my tinnitus so well in years! I was so happy when I finished the project.

Once or twice a year I teach the class and it always throws me back to my early days when I suffered from it as I listen to others tell their story. At least there’s more information available today thanks to the internet than what I had in 1987. It’s wonderful of the state of Utah to offer this class to help others. Together we talk about it and I always hope I helped them at least a little bit. Today I thought I’d write up a list of things to help other people as well.

Tinnitus is most vicious at night because the world is quieter. All we want is to sleep and it seems impossible with all that racket in our head. We lay there awake..thinking about it, hating it, crying or pissed off. It’s at the forefront of our thinking and it’s evil.  

Here’s some things you can do to help you sleep. The trick is to take your mind away from your tinnitus and place it elsewhere. If you find yourself focussing on your tinnitus, take the focus away to something else.

1)  Soft noise. Turn on the fan. Get a fish tank that bubbles. Use soft music or the TV. There’s small water features you can buy to keep on the nightstand. Get some environmental sounds to listen too. (I use an app on my phone called SleepStream 2 and I love it. There is a fee.)

2)  Try something visual. I know some people don’t like lights at night so experiment. Try fiberoptic lights or something like a projection of the night sky on the ceiling.
3)  Some people claim aromatherapy distracts them from their tinnitus at night. Find a soothing scent.

4)  Create a regular bed time habit and make it a comfortable routine. Turn off the TV, read a bit, have a cup of tea. Create a peaceful atmoshphere with light background noise. 

5)  Find your happy place. Start creating a visual in your mind of your perfect place. Counting your blessings also works, not matter how small it starts, the list will get bigger.

During the day it’s a little easier to ignore tinnitus but in quiet places or at idle times it can sneak up on you. Again, every time you catch yourself thinking about your tinnitus take it away to something else.

1)  Mindfulness works. If you’re dusting furniture and the ringing is driving you nuts, focus instead on the dusting-the motion your hand makes, the smell of the furniture polish, the trails you make in the dust as you go.  

2)  Keep light noise in the background. Don’t make it too loud because sometimes loud noise can make tinnitus work. Use the radio, some music, the TV.

3)  Some people started a new hobby when tinnitus struck. I remember a story of guy who took up running to ‘run away’ from his tinnitus. He used it to work through his tinnitus and enjoyed it so much he became a marathon runner. Have you always wanted to paint? Take and art class. Take a dance class or start attending a climbing gym. Having something new to do will give you a new focus.

4)  Many hearing aids have a tinnitus program option. Whenit’s quiet at the office, I’ll turn on my tinnitus program and I hear crashing waves in the background. If someone comes in and starts talking to me, the waves fade away and I still hear environmental noise.

5)  Here’s your excuse to go get a message. Tense shoulders leads to a tense neck and even a tight scalp. It could be making your tinnitus worse. It won’t take away your tinnitus but maybe you’ll feel more relaxed and able to deal with the tinnitus better.

These are practical tips. I don’t know much about alternative therapies so I won’t get into that. The American Tinnits Association (ATA) which talks about those therapies and you can explore them on your own. The ATA has tons of good information on tinnitus and you can read the latest updates on studies too.

Some people have tinnitus triggers and spikes. Mine is a lack of sleep and it will make my tinnitus scream! I warn those around me it will be a bad hearing day. For other people it’s loud noises, over the counter meds, diet (caffeine, sugar, alcohol, salt) or smoking. None of those things affect me but lack of sleep will. It’s different for everyone.  

If you’re feeling suicidal please seek help.  I know of someone who was, reached out for help instead and successfully habituated tinnitus.  

Feel free to share your tinnitus story in the comments.  I’m always looking ways to help people with their tinnitus. 

“Meatball Sugar”… Say What?

In Deafness, Hearing Loss, Lip Reading, Mishearing, Speech Reading on January 20, 2017 at 4:46 pm

by Michele Linder

According to Miriam Websters Dictionary, a mondegreen is a mishearing or misinterpretation of a phrase as a result of near-homophony, in a way that gives it a new meaning. It often happens when a person is listening to a poem or a song, but it can happen in other situations where spoken words sound similar or look similar on the lips. Interestingly, the term was coined in 1954 by American writer Sylvia Wright while writing about how as a girl she had misheard the lyric “…and laid him on the green” in a Scottish ballad as “…and Lady Mondegreen”.

Mishearing is common among those with hearing loss and those who rely heavily on lipreading, but it isn’t exclusive to that group. Even hearing people get words that sound and look alike on the lips wrong on occasion.

I recently was watching The Great American Baking Show and had a real laugh-out-loud moment during the Custard and Meringue Week episode. The moment can be found at around minute 4:40 of Stephanie’s Maple Fennel Crème Brûlée segment.

Mary Berry, one of the judges on the show, expresses her concern over the unusual combination of maple and fennel being used in a sweet custard dish:



Stephanie, the baker in question, assures Mary that the fennel compliments the maple syrup and maple sugar.



Looking a bit perplexed, Mary asks Stephanie…


Then it’s Stephanie’s turn to look perplexed…


Realization sets in and the whole room erupts in laughter at Mary’s mishearing…



Try it while looking in the mirror… say “meatball sugar”, then say “maple sugar”.  It’s really interesting that really different words can be mistaken, each for the other.

Mary, being a good sport, gets a big kick out of it herself…


And, of course, Johnny Iuzzini, the other judge, has to lend some sarcasm…




Sometimes the best thing — whether you’re a person with hearing loss, or not — is the laughter that comes from mishearing what was intended.

I hope you enjoy this as much as I did.