Tinnitus can be a cruel and constant companion.
Some people who have tinnitus (very few, I suspect) have been able to consider their head-sounds as music. If what I hear every second of every day is music, then I want to put another quarter in my head’s jukebox and play something else. And the music I’d pick is silence. When looking at something beautiful such as the Arizona outcrops in the picture, I want to enjoy its beauty in the same way as my friends – in silence, without head noise.
But hey – maybe if I describe my sounds to you, you might think it’s musical. Let me listen for a moment.
OK. On the right side, there’s the hum, along with another slightly higher hum, not quite in harmony. Definitely not in harmony. On the left side, a deep bass is thumping out of beat with anything else.
I just turned my head and, oh golly, here comes the high whining-singing pitch of hyperacusis, which makes all external sound louder, until I can manipulate the sound down with a deep (and I mean deep) breath, or another turn of my head, or a tensing of all my shoulder and neck and jaw muscles. Then the hums and the thumping bass start up again, waiting for other sounds to join the band. And at this moment, the tinnitus is especially loud because I’m focusing on it, as I describe it to you.
Is this music? Maybe. But when I wake up in the morning, the sound mix is different. Heck, it will be different by the time I finish writing this article!
Oh hey, a tinkly little sound just tinkled in the upper left side of my head. It’s gone now…and good riddance.
Only one hearing care professional has allowed me to give the same full description of my tinnitus as I’ve just given to you. She is my cochlear implant/tinnitus specialist and she has never said, oh gee, that’s too bad, there’s nothing we can do for you, as other medical professionals say because they have no other answers. This audiologist has suggested several things such as special physiotherapy, meditation, and even medication among others. And some things have helped me deal with my tinnitus – and that’s an acceptable second best to getting rid of it completely. I’m able to ignore it, or at least reduce its emotional impact when I focus on other things like conversation, reading and watching movies.
But still, I want that silence that other people hear: the silence that fills the spaces between words, music and other good sounds. The silence you may not even notice, but I notice its absence. My tinnitus doesn’t stop when someone speaks; it rides along with the words and the spaces in between. I’m envious, because when I look at other people, I know they’re hearing the same sounds differently than me. To them, the sounds, whatever they are, don’t come with a backup band.
I haven’t forgotten what silence feels like. The last time I heard it was four years ago when I had my cochlear implant. The anaesthetic had been administered and then, in the last moments of consciousness, the noise stopped for a few seconds before I went into oblivion. It was a heart-stopping, beautiful few seconds that I will never forget.
It’s a challenge to explain the reality of tinnitus, severe tinnitus, to those who don’t have it. On a tinnitus Facebook group today, I read one woman’s tactic to help her family understand what she is going through. She wasn’t looking for answers, she just wanted them to understand.
“I hid my phone in the living room and played ‘my tone’. Everyone was asking what’s that noise and after a few minutes of people saying can you hear that and looking at each other with a confused look, I informed them that this is what I hear all the time. I got up and found my phone, which I hid behind a picture on a shelf. When I turned it off, I asked how everybody felt and told them they were lucky, because my sound has no off button. Now they kind of get it.” – Jennifer Garnett-Oliver
Like Jennifer, I’m not looking for answers. I am writing this because I want people to understand.
And also because I want to hear that silence that they hear.
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