Living with hearing loss: ‘How a cochlear implant changed my life’

On September 15, 2020, my cochlear implant had been switched on for 36 years. That is, working and in use for 15 to 18 hours every day. So, I estimate it has put in about 196,695 ‘hearing’ or ‘listening’ hours at a minimum. I’m really happy about that. I think it’s probably a world record.

My device was the first cochlear implant operation in Sydney, performed in 1984 by surgeon Professor William Gibson, under an experimental program funded partly by Sydney University. I was just 22 years old and had lost my hearing completely and suddenly from meningococcal meningitis in April of that year. So I was thrown suddenly into a different world in which I couldn’t understand any conversation or hear any music or anything around me at all.

As a ‘hearing’ person, that’s quite daunting. I was used to conversing freely and easily with my friends, family and workmates and had a very active social life. I was working and studying and getting out and about a lot and then my life as I knew it sort of stopped. I couldn’t hear anything at all except head noise, tinnitus.

The implant changed my life from one of silence (well, not quite complete silence, when you have tinnitus ringing in your ears…) to one of hearing. I was able to participate in conversations again. It opened up my life again to all sorts of opportunities that hearing people take for granted every day. I hear my own voice — which enables me to monitor the clarity and volume. If I don’t have my ‘sound’ on, I can’t even hear my own voice.

Hearing with a cochlear implant is not exactly like natural hearing and it can take time to adjust at first, to understand this new sound. I was keen to listen though and with practice, speech and environmental sounds became clearer. I have seen the implant program grow from that very first experiment, to see the first child implanted in Sydney in 1987, clients aged four months to 90 years undergoing implant surgery and 36 years of improvements to the technology.

Today, the sound processor (worn on the outside to power up the implant) is reduced almost to the size of a behind-the-ear hearing aid and has wireless streaming directly to a mobile phone. Over 36 years there have been several great leaps in better sound quality and adaptations to integrate with other technology we use in daily life. It has been fantastic to witness this journey and see so many people benefit from hearing again.

In 2005, I received a bilateral implant in my other ear, so since then, I have been hearing with two ears and better than ever. The second surgery was much quicker and all over in about two hours. The surgical technique has been refined a lot since my first implant. I went home with a simple tape dressing behind my ear and had very little pain or discomfort.

These days, Bluetooth technology enables me to stream phone calls, music and podcasts directly to my Nucleus 7 sound processors and get as clear a sound as possible from an electronic device. I can even listen to a zoom meeting while I’m driving. While I still need to pay attention to hear well, the more recent sound processors enable me to hear more clearly in background noise.

However, the cochlear implant is still a mystery to many. A significant number of medical professionals are still unaware of how well it can work, who it can help, how amazing it can be — and I find this astounding. In Australia, we have had some public funding for implants for many years now and despite the success stories, there are still many people with severe to profound deafness, where normal hearing aids can no longer help, that have not been advised to give a cochlear implant ago.

An international meeting was held at the World Health Organization (WHO) last year in Geneva, Switzerland where experts in the field of hearing loss and cochlear implants gathered to consolidate evidence and develop a series of statements about the proven effectiveness of a cochlear implant and to establish an international cochlear implant standard of care. The findings of this WHO meeting have just been published in an International Consensus Paper on Adult Cochlear Implantation. This is a landmark statement from an international body, which will hopefully raise awareness of cochlear implants and the benefits they can bring to people’s lives.

I volunteer with a group of lovely people to run a cochlear implant support group called Cicada Australia. All of us have cochlear implants and are passionate about sharing this information with others. We usually (outside of Covid-19 times) hold morning teas and barbecue days as social gatherings for implant recipients and friends and families of those wanting to know about implants. Those with severe to profound hearing loss find it very reassuring to meet people with cochlear implants and see the benefit they get from them.

Hearing loss can be invisible. Most people don’t care about the subject of hearing loss until they lose it themselves. I feel we really need to spread the word.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.