Otosclerosis gradually led to permanent hearing loss, says ELIZABETH PECTU
MY HEARING loss crept up on me very, very softly. I feel it happened over at least 15 years and may even be happening still. I wouldn’t really have been aware of it at all until I found myself using the phone on one ear only and then people being surprised when I didn’t respond to something spoken.
A niggling little signal would also have been, say, at a theatre or movie, when the people behind you would laugh at something you didn’t hear.
I suppose I was very reluctant to “come out”. Admitting it to myself was difficult and I was able to mask my difficulties very well for ages. I had strategies, unconscious ones: like simply avoiding people who spoke confidentially or quietly; slipping away from crowded rooms without anyone noticing; and nodding merrily when being spoken to and hoping it hadn’t been a question.
I was principal flute in the RTÉ Concert Orchestra for over 25 years. I may well have been the youngest female principal woodwind player in the history of the orchestra. The Concert Orchestra, about 45 permanent members, is a great place to be as the repertoire is very varied and can go from serious opera to the Eurovision Song Contest in the same week. If the schedule was busy, rehearsals would be short and sweet. If we made recordings, they were often quite pressurised: against the clock, lots of retakes and highly concentrated work.
We did lots of live concerts too, which I loved and still do. There’s no substitute for the “in the moment” experience, no matter how imperfect it might be.
I have a condition called otosclerosis, which is a spongy build-up on the tiny bones of the middle ear. Beethoven is supposed to have had it. Since the bones become stuck together, they don’t vibrate and transmit sound very efficiently into the inner ear. It’s a bit like arthritis of the bones of the ear, which is a funny image.
There are often genetic reasons for a condition like this, which I didn’t give any thought to until asked was there any deafness in my family. I was taken aback by that question because I’d never really isolated hearing as an issue. But then I realised that, yes, my paternal granny had been quite deaf, my maternal grandfather also, and that both my parents relied on hearing aids.
During this experience I’ve learned lots of things about myself and about others. I decided to spin what happened to my hearing positively, if that doesn’t sound stupid.
Sometimes, I feel I overdid this and I can easily find reasons why I like my hearing the way it is! It has taught me to be resourceful: if confronted with a problem I can usually find a coping strategy or a solution. So, for example, if I’m not sure whether the washing machine has started or not, I can simply put my hand on it and feel the sound.
Sometimes I feel that it’s not me who has the problem, that it’s other people. Can I explain this better? When I was small, a huge blind man would get onto the bus with us every morning on the way to school. I was terrified of him – he was huge and he’d flip open the glass of his watch and feel the hands with his huge fingers. Perhaps, looking back, I was the one with the problem, as he carried on his way without a bother. And it is interesting that when I got myself two fancy high-tech, expensive hearing aids a few years ago, everyone else was delighted.
A bad day for me would be when I’ve nothing much to do and a good one would be when I’ve projects to work on, problems to solve, books to read, new pieces to learn, things to do and not necessarily anyone to interact with.
It is frustrating when my hearing aids act up or I have to traipse in and out to my audiologist to get them fixed. A bad day could be when people expect you to hear and get impatient, or shout at you or think you’re stupid if you don’t pick up everything as fast as everyone else.
My school organised a gadget for me which is brilliant for a classroom setting, or a table full of people, so I’m now luckier than most: I can turn my hearing on and off, rather like closing your eyes when you want a rest.
I’m the subject of a film by Hilary Fennell called Hearing Silence. Hilary was so organised and lovely to work with and she chose the most efficient crew to help her.
She put lots of music into it as well. I play duets in it with Mircea, my husband, and I play with Martin Doyle, my flute-maker. I love process, and preparing the material for the movie felt familiar to me as it would be akin to preparing an exhibition or a concert.
I was a bit miffed that both my dogs, especially my noisy German Shepherdess, got to upstage me. They’ll have front row seats at the premier.
Hilary, of course, chose to include a bit where I lose my facade and I get momentarily tearful! This reaction of mine actually surprised me because I thought I had come to terms with everything that had happened.
For more information on the film, Hearing Silence, see hearing silence.com
