On Cochlear Implants: Sue’s story

When I was 22 I got meningococcal meningitis and was really sick. I lost my hearing during that time.

It took me a long time to recover (I even had to learn how to walk again) but my hearing didn’t come back. I was referred to a Professor Gibson that had just arrived from London to the Royal Prince Alfred Hospital, in Sydney, to do research on cochlear implants. At first I didn’t know if I wanted to be part of the trial, but it was so hard to follow what people were saying. I just had this super loud head noise in my head so I couldn’t relate to the outside world. After 5 months I thought maybe I should just give it a try.

They chose two people as recipients for the implants: Cathy and me. She was of a similar age to me but had been deaf for longer. We became quite good friends at the hospital. Soon thereafter, I realised how experimental this was going to be. I met Professor Gibson and he walked me through the process. It was 1984 and I was going to be one of the lucky ones to get one of the first cochlear implants in Australia. This was going to be Professor Gibson’s first implant too. I guess life is life and you just gotta do it.

It was really amazing because it was so new and worked quite well for me. A month after the surgery they switched me on and the sound was strange – like a computer game. I couldn’t recognise my voice when I spoke. I went home with my sound processor and started listening to things. One of the first things that I did was pick up the telephone and call my mother. We couldn’t have much of a conversation, but just being able to hear the dial tone and Yes and No was enough. A friend of mine was my first auditory trainer, she would prompt me on things and bring my attention to noises. That’s how I learnt to distinguish background noises and overtime, they became more of what they are.

The hospital often invited Cathy and me to meetings and other events with people who wanted to know more about the cochlear implants – both, practitioners and potential recipients. We became accidental advocates. I would often go to the RPA Hospital to visit someone who was going to have an implant.

It was Cathy who suggested starting a club and get people together. So we did. We had a meeting in December 1984, right before Christmas, and we had 60 people come along: people from the Deaf Society, from the RPA Hospital, people interested in the implants, and their families and partners. A couple of the newer recipients were really keen to keep the group going, so it grew slowly. We called ourselves CICADA. Prof Gibson came up with the name, he is clever with things like that, and cicadas make a lot of noise!

We are mainly an advisory and a social group because to me, that personal connection is always the most reassuring thing a person with a hearing condition can have. We have monthly morning teas and a BBQ day every three months (until COVID came along), where everybody comes along and we talk about how we managed to communicate with our implants in a social way. We help each other understand how to use your new hearing to best advantage. It’s a really nice vibe, coming together for that common cause. We can arrange a one-on-one personal visit where we have a chat with people before them going into surgery so that that they get an idea of what it is like and ask any sort of questions they may have. It’s all about personal contact and real-life stories. That’s what’s makes us effective.

We want to encourage other areas, (specially regional areas) to have support groups like ours. Nowadays there’s so many people with cochlear implants but they’re spread out all over the place. I feel they’d like to get together but it’s about finding a medium to connect them all.

In the end, I would like CICADA to become a national brand. There’s still a lot of misinformation and lack of awareness on cochlear implants and how they can help. Having a cochlear implant gave me something to connect to the world with again. I had to learn to pay attention to the sounds around them – to rediscover them. We need this recipient voice to get the message out there.

If you’d like to get in touch with Sue or CICADA, click here.