Imagine waking up one day and every single sound you hear suddenly becomes overwhelmingly uncomfortable. Even the little sounds. Someone walking around, making breakfast, plates clattering, speaking on the phone, etc. etc. Even more so when the vaccum cleaner, washing machine and/or hairdryer is on. People chatting, cars driving by.
This is our world. Many people with CVI are oversensitive to sound. When I was a child I experienced crippling fear of many sounds. I would run into another room and cover my ears the entire time my mom was vaccuming, or when the washing machine was on. In the summer, when we traveled around the country I'd scream and cry in every public toilet because of the flushing sounds and ,,roaring" hand dryers. When out on the farm, I was deathly afraid of the cows mooing. One time I remember our car being broken, and it had a loud sound to notice us, I completely refused to get in the car for the time that the beeping sound was on.
But those sounds didn't even have to be loud. I remember that my biggest fear as a child were FLIES. Just those tiny little, black houseflies. I remember many times I shrieked , cried and curled up in a sort of fetal position when hearing the gentle buzzing of a fly. If I heard a fly or any similar sound anywhere in the house I couldn't stay there. I never was able to fall asleep if a fly was around, so I always had to have my parents remove the fly before sleeping. I didn't understand this fear of flies until very recently. It's not only the sound of them, but flies are moving visual targets, so they weren't always in my ( extremely limited) field of vision. So when they suddenly pop into my visual field I got scared, as well as from the buzzing sound. I have thankfully grown out of many of those fears but still have some of them. I am no longer such deathly afraid of flies or cows mooing, but running hand dryers and flushing sounds still make me uncomfortable ( not afraid, more like, uneasy). I still might cover my ears when somebody is vaccuming f.x. I still hate loud chattering and / or shouting. New years still is a big issue for me due to the loud fireworks.
One vivid memory of mine is that we had a bingo game which was about putting a little plastic coin over a picture. Each picture had it's own sound which was included on a casette. For example if you heard a lawn mower, you'd put a plastic coin over a picture of one on a bingo card :) etc. etc. I was really afraid of that game, never wanted to play it, but didn't understand the reason until I got the CVI diagnosis in 2018. Here is a similar game explained: https://www.youtube.com/watch?v=uTNL3WXEexA&ab_channel=MisterTeach
However, this crippling fear of sounds, isn't only a negative thing. I realized that when I started my music studies. Due to CVI, I am unable to read sheet music effectively. It has been a major struggle, and I don't experience much understanding of my disability and how it affects me in studying. On the other hand this oversensitive hearing is probably the only reason ( apart from a burning passion for it) that I am able to study music, now at an advanced university level. I am able to detect wrong notes easily as well as I learn my music often faster than normal. It is my opinion that the people that are over the music academies around the world ( not only here in little Iceland) don't take into account people's sense for music, their ability to hear, their ability to use auditory skills along with visual, if not even more so. I mean, look at f.x. Andrea Bocelli. He's 100%blind- nobody expects him to read visual sheet music!. Even Pavarotti himself couldn't read notes, probably due to dyslexia!. Note- I'm not trying to decrease the importance of note reading- just saying, this needs to be emphasized as well.
So, as overwhelmingly scary our world of sounds can be, it has become the thing that I rely most on in my professional life of singing. In a way I am deeply grateful for this all as it has helped me grow, both a talent, and as a person. But, the times that I feel fear or overwhelm due to sound, are still terrible. When I sense that could happen, I usually wear headphones with calming music in my ears, to distract. In extreme situations, for example when on an airplane or on long car/bus rides, I like to use my noise cancelling headphones, as they block any extra noise. Some meditation ( for example through an app,) is also good for when feeling scared/overwhelmed.
When our vision doesn't work as it should, in whatever way possible, our hearing takes over. The fear and terror is real and genuine and should be taken seriously. If I am to try to describe this fear I think it comes closest to the feeling when you are running from someone who is chasing you with a gun or a knife ( I imagine it's closest to that feeling).. Although this fear stays with us CVI'ers in some way during all of our lives, thankfully, most of us, grow out of the worst phase. As we get introduced to more and more sounds throughout life, this diminishes the fear.
I choose to look at this as an advantage in my studies and be thankful for it, however terrible it makes me feel sometimes <3
Over and out!
Dagbjört
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