How Cochlear Implants changed my life

Sue

Sue's behaviour had changed from 'angel' to 'wild child' and her parents had no idea why. It wasn't until she was diagnosed as severely deaf that they realised she couldn't hear speech and this was causing her behaviour. With no family history of hearing loss it was a totally unexpected outcome. This is her story.



Sue Young August 2009

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My story began in 1966 when I was five years old. Finally, after many months of tests, my parents were told I had a mild to moderate sensory-neural hearing loss (nerve deafness) which meant I was missing the main components of speech. This explained the changes in my behaviour and personality from 'angel' to 'wild child', as my aunt once said. There is no known history of deafness in my family although my only sibling, a sister, has also followed the same medical path.

By the time I was in my 30's, I was bilaterally profoundly deaf, used two high powered behind the ear (BTE) hearing aids and continuously 'bluffed' my way through and social isolation became a way of life.

Employed as a head chef, I felt no longer able to continue the high demands of my chosen career. My communication mishaps had produced too many expensive mistakes. I could not converse on the telephone and I had to leave the industry. I applied for new employment in positions below my capability.

How did cochlear implants change my life?

By chance or by pure luck, my journey into the world of a Cochlear Implant recipient began in March 2003.

Sue with Professor Clark

I was invited to attend a fundraiser, organised by friend Bill Wheeler of Kiama Rotary Club where I was fortunate to speak at length with the Guests of Honour; Professor Graeme Clark, the inventor of the cochlear implant (Bionic Ear Institute, Melbourne) and Professor Gordon Wallace (Intelligent Polymer Research Institute -University of Wollongong). Coincidently, Professor Clark has close ties with Kiama because it was on one of the local golden beaches that he made a major breakthrough in the design of the cochlear implant. While walking on the beach he noticed the natural tapering of seaside grass and this became the basis of the tapered design of the cochlear implant electrodes.

It soon became apparent I was lost in a medical 'gap'.

After conversing with Professor Clark my outlook changed dramatically regarding the current Cochlear Implant program. Like others in my age group, with no underlying or ongoing medication issues, I was not aware how far Cochlear Australia had advanced in their 'bionic' technology. I had believed the Cochlear Implant was still in the experimental stages, targeting children and the elderly. My regional health care professionals were also ignorant on the candidacy criteria and how advanced Cochlear Implants had become. Many times I was told by these professionals that they did not consider I was 'deaf enough' for an implant. It soon became apparent I was lost in a medical 'gap'. I did however, collect seven referrals to 'look into it' for the future but I was never given information about an implant and the realistic changes it could make to one's life.

In early 2004 I finally took the courage and used one of my numerous referrals to see Professor Bill Gibson, thus undertaking the first stages of testing necessary to assess my suitability as a candidate. September 2004 saw my first successful cochlear implant in my 'worst' right ear. The operation was stress free with minimal side effects. However, it took four months for me to fully adjust and rehabilitate to all the new sounds. For the next 12 months I continued to wear a hearing aid in my left ear and relied on memory and a million 'what is that noise?' questions. Within 24 months my recognition of monosyllable words by hearing with my cochlear implant alone improved from 43% to 100% in quiet areas and, for live voice sentences, from 4% to 97%.

My cochlear implant definitely has enhanced my life. For the first time I was able to appreciate everyday conversations with my husband and three teenage children. It changed my black and white 'deaf' world into 'hearing' with colour. I converse on the telephone (a miracle after 20 years absence), talk and hear people in the car - even from the back seat with the radio on. Once again I can happily socialise with family and friends, actively interacting in the conversation. I can hear music and understand the lyrics. I no longer rely on lip-reading to communicate - running around to face people so I can see their lips. I no longer require subtitles on the television and I can hear the radio, use an iPod and I enjoy going to the movies.

In December 2006, I underwent a second cochlear implant for my left ear. The decision to have a second implant was based on the numerous occasions when I was unaware my hearing aid had a flat battery. I soon realised my aid only provided me with the sense of sound to the left side of my body, no longer producing distinguishable hearing. I fully accepted the second implant the day after switch on. My left implant produces an improved clarity of speech and direction of sound.

Being able to hear gave me courage and self-confidence

Being able to hear gave me the courage and self-confidence to venture into unchartered territory. In 2006 I commenced the Bachelor of Arts (Population Health) at the University of Wollongong and graduated in 2008. A week after completing my course I was promoted to a graduate position and I am now studying for my Masters. My current position requires a high percentage of phone use therefore without my implant, I would not had been promoted. Being able to use a telephone lets me communicate freely.

My love of music also returned. In 2006 I commenced rock'n'roll and salsa dancing. Strangely enough the lyrics of all my favourite songs are now clear and I no longer have to memorise them from the CD covers; I can actually hear them!

My journey continues; in 2008 as part of my studies, I implemented CICADA Illawarra Cochlear Implant Support Group for new and prospective cochlear implant recipients in the region. Through this group I have developed many true friendships.

I also conduct talks and presentations on hearing loss and associated problems. In 2009 I joined the Cochlear Awareness Network (CAN), a group of cochlear implant recipients from across Australia and New Zealand who promote their experiences to interested community members and health care professionals. In addition, as a mother of three teenagers, I have been called to give presentations to young people; designing my presentations to share the knowledge of hearing loss and prevention especially in relation to excessive and dangerously loud use of personal music players such as MP3s and iPods. This is a project I am passionate about because it will probably become the major community hearing loss health issue of the future.

Ever since I was a little girl to hear normally had always been an unachievable dream. Since September 2004 and again in December 2006 my dream came true bringing so much change in my life - physically, emotionally and spiritually. For those with a severe or profound hearing loss, a cochlear implant is a way to rejoin society. I cannot recommend cochlear implants strongly enough, but it is a choice that must be weighed at a personal level. For me, the past five years have been a miracle.

Cochlear implant recipients simply have the desire to hear and in doing so, lose their 'hidden handicap'. The passion to share my journey with others is driven by my personal transformation from a black and white silent world to one rich with the full of the colour of sound. I am grateful everyday for the sense of sound, enabling me to rejoin our community as an active member and give my support to others.

Read other stories by Sue