Way back in the 1990’s – when I got my Cochlear implant, I started writing a diary. I had been totally deaf from the age of 5 through meningitis.
This became a blueprint for a book I was going to publish. Things happen in life, I got distracted, as you do when you have work, a home and teenagers to deal with ….. and so I stopped writing it . (For a while… maybe I should go back to it one day when I’m old and grey and retired? it’s on a floppy now, so I’ll have to get a nice person to put it into a CD format).
But there are certain things in this narrative that I produced I would like to share with you. Some of it is quite emotional. I don’t have time to publish and these things need to be said to raise deaf awareness and make people realise what they are missing by not going on these courses to learn about deaf and deafblind people and how they see life treating them. I am so happy to see Blogs now – and I think Blogs are probably as good to read as a book.
I don’t wear my CI now. I can’t hear words with it. it gives me “white noise” and makes me confused when I’m trying to lipread. I can’t tell which noises are high pitch and which ones are low. A bit like Edward Scissorhands trying to pick up a pea. And a bit like dealing with constant tinnitus that stops you from concentrating. I don’t for one second want to say that Cochlear implants don’t work, they do. They give such a relieving support to many many deafened people, they are absolutely wonderful to those who are lucky enough to hear birds chirriping, water bubbling down a brook, leaves rustling and some can even hear a familiar voice on the telephone once again. Some people regain their enjoyment of listening to music, being able to hear when the doorbell rings, being able to support poor lipreading with sound. I think Cochlear Implants, for those who used to be hearing, like me, are a marvel of technology and we are all so very lucky to be given the opportunity to be able to hear again, when not so long ago if we became deaf, that was it.
Anyway, here’s what it’s like to live and communicate in constant silence. If you have hearing, you will never be able to “see” this world until your hearing has gone. It is impossible to find a place where there is complete silence, until you’re deaf. A little bit of silence, they say, is golden. Total silence is not. Total silence was not my aim in life when I was born.
Total silence is an impenetrable bubble that cuts you off from sound or the feelings of sound. You can hear nothing. No sound. No emotional contact to help you determine what environment you are in. You cannot understand why some people have to tell you to “Speak up” because the background noise is so loud and you cannot see what is making that noise. it may be a siren going off, traffic out of sight, a pneumatic drill round the corner,even, or a loud background whine you are oblivious to. Your expression of emotion needs another channel to cope with the dead, solemn stillness loss of sound subjects you to. You no longer know how people are intending you to decipher their moods by the intonation of their speech.
“MY dog is at home” means you are reinforcing the fact the dog is yours when the “MY” is a lower pitch. If you said it another way such as “My dog is at HOME” you mean you know for certain your dog is at home. Yet another way, if you allowed the “home” to trail to a higher pitch it would mean you are asking a question and querying whether your dog is at home or not. Again, if you simply stated a monotone “my dog is at home” you are just stating a fact that’s not too important.
All this is gone when you lose your hearing. You lose a feeling of where you are in the world. You also lose your perception of the language of sound and the complicated interconnecting threads that are so important for successful communication between people. You become insecure and depressed. You do not understand why you feel that way. You miss your footing and stumble over words each time you open your mouth because you can’t hear your own voice anymore. You start to express yourself visually. You begin to demonstrate primary emotions on your face. You screw your eyes up when frustrated, raise your eyebrows when you are asking a question, purse your lips down when you are sad or disapproving and beam when you are happy. You can no longer control your voice, you start to shout at the wrong time, or when you want to make a point, and you only lower your voice when you intend to whisper. You are beginning to be told how to say things, and frustration creeps in. You shout “MY” dog is a home to emphasise the “my” by loudness rather than pitch. You shout “home” for the certainity you know the dog is there and you are never understood when you try to make a question out of a monotone. Those who are listening start to struggle to follow you without watching your face and expressions. Your voice changes through no fault of your own and this is not always recognised. Eventually the link between loudness and pitch finally severs and you are on your way to becoming a real deaf person….
Copyright Suzie Jones (written around 1999).
It’s not surprising then, is it, that if you were once hearing, you lose your confidence and people don’t understand why. Next time you have a free moment to go on a deaf awareness Communication tactics course, do take it – you’ll help not just yourself when you become deaf, but everyone else too. who is in this boat.