I’ve met Carol and Jeff in Perth, where they are the Cochlear Awareness Network volunteers for Western Australia. They both became deaf after a normal-hearing childhood, and are now both bilateral implantees, having received Cochlear products.
This is their testimony about their diving into deafness – and their successful comeback up.
1) How did you become deaf ? How severe is your hearing loss now ?
// Jeff became gradually deaf by otosclerosis, from his late 20’s. The loss was very progressive at beginning, but got suddenly worse one day when he blew his nose. From this day he had a severe hearing loss and started to wear hearing aids, but his hearing continued to deteriorate until 2000 (he was 55) where his hearing loss became profound. He could use only one big hearing aid « which helped for about 18 months ».
Finally, in April 2005, in the espace of three hours, he went « from a little hearing to absolutely nothing », in other words from a profound hearing loss group 1 (90 dB of average loss) to the group 3 (from 110 dB of average loss to absolute deafness).
// Carol became gradually deaf from her 30’s to now. The loss was progressive, without acceleration except a huge down turn after each birth of her children (she has 4), but became quickly very painful for her social and work life. She got a hearing aid not long after the birth of her first child, and three years after she got a second one. But they became also step by step quite useless.
2) What were the consequences on your social and work life ?
// Jeff gradually gave up phone conversations because they became too difficult. Around 2000, his social life deteriorated very quickly because he made many mistakes in conversation. After a while, he started to refuse invitations because he hated making a fool of himself.
From April 2005, he simply couldn’t lip-read enough to carry on a normal conversation, not even with his close relatives, « and my poor wife spent her waking hours writing, writing and writing. She hated it. It was frustration personified for the both of us. » They even started to learn AUSLAN before the implant surgery, trying to find a better way to communicate than writing.
// Carol couldn’t phone anymore neither have work meetings because it was too difficult for her to follow the conversation. She could no more have a social life because her friends drifted away, considering it was too difficult to communicate with her. Communication with her children was difficult too, and again more also with her husband who was not a patient person, until she left him with her children and moved from Bunbury to Perth.
3) How did you know about cochlear implant and what led you to the decision of receiving one ?
// Jeff knew about cochlear implant from radio and television, « but I had never seen one and no one ever suggested to me that I should be going down that path. » However, he was put in contact with Cicada, in Western Australia, and his general practitioner referred him to the Lion’s Hearing Institute and to Pr Atlas « who was fully conversant with cochlear implants » and told him he was eligible for it.
The professor convinced him so well that it took only six weeks from his first consultation to his first implant.
// Carol’s mum had also really a bad hearing since a long time, so that they finally communicated with her through sign language – the absolute limit for somebody who went from normal-hearing to complete deafness and was acustomed to normal communication before ! But in 2001 at 70, she received a cochlear implant.
« She had a fantastic result for someone of her age and so she and Dad started to badger me to have an implant. I felt there was no guarantee it would work. I guess I was scared and had this silly idea that I was not really that deaf – certainly not as deaf as my Mother was and I didn’t want to do it. My children eventually joined the crusade and I finally relented making an appointment to see Professor Atlas. He was lovely and encouraged me to go ahead with the implant. By this stage I was only picking up 2% of the conversation with my hearing aids and no lip-reading, so the hearing aids were pretty useless to me.»
She accepted and they made a date for the surgery, but she did not make it without many doubts and fears.
« Why would I want someone to cut open my skull and insert a foreign object without any guarantee that it would improve my hearing? » But she didn’t step back.
4) What did you feel after the surgery, and now ? What are the improvements cochlear implant gave to your life ?
// For Jeff, the change was unmistakably better from the very beginning. Jeff went from complete deafness to the restoration of everyday sounds. He acknowledges, however, that at first the sounds seemed to him very high-pitched and mechanical, but he was told it vould just get better, « and it did. »
Jeff received his first cochlear implant in the right ear in 2006, but, due to otosclerosis and the bone growth in his cochlea, only tweleve electrodes could be implanted. He decided then to have his left ear implanted, which was done in 2007. This time, the full set of twenty-two electrodes could be implanted, and the recovery was even better than the first ear’s one.
Jeff’s recovery was around one week only, for the two implants. The improvement of his social life has been considerable : now he can talk comfortably with his wife and accept friends’ invitations like in old times. He can even phone again.
// Carol’s recovery lasted around six weeks from the day her implant was first switched on, with tremendous progress from the beginning. « Just two weeks after the switch on my first test showed I was now picking up 98% of the conversation with the Cochlear switched on and no lip-reading.»
The improvement of her social life was beyond all that she hoped. She can now phone and have work meetings without problem, and her relationships with her family, children and friends have been entirely restored.
5) Do you think you’ve made the right decision ?
You guess the answer was a loud « YES » from both…
6) Have you ever thought of giving it up ?
// Jeff was never scared « I was deaf – what could be worse ? Anything that would happen would be better » and never thought he would give it up because his recovery was very quick and better from the very beginning than the silence he had been plunged into since one year.
// Carol have been really scared before and just after the surgery – she nearly gave up the night before the surgery, but finally she didn’t step back and things went quickly better and better, so she never regretted doing it.
« No way would I give it up now, as it has changed my life for the better so much, I know I would never had the senior Management position at Edith Cowan University if I had not had the implant. »
7) Some deaf people dislike the thought of being implanted because for them deafness is a culture, a community which they believe that implants threaten. What would be your opinion on this subject ? What is your relationship with the local deaf communities ?
Both Jeff and Carol are not very involved in local deaf community, because they prefer oral language to Auslan, and doesn’t define themselves as deaf now, because of the fact they are not deaf from birth, but primarily normal-hearing persons became deaf and that they have now recovered nearly all their hearing. They acknowledge that deaf community and all the staff around it – Auslan interpreters, volunteers and all others – were very friendly when they tried to approach them, as long as they was trying to learn Auslan and to integrate the community. But they never said they had – or wanted to have – a cochlear implant because they knew it was a huge bone of contention between deaf community and people became deaf. However, they talked about it to have deaf’s opinion about it, and it was an unanimous refusal to the idea of having one, and to talk about it too.
To Jeff and Carol’s mind, cochlear implant is the best thing ever invented for people suffering from an hearing loss, because they know what it is to hear normally, and have experienced the trauma of hearing loss, and the blessing of auditive recovery with cochlear implant. But they are perfectly aware that the opinion and feelings of someone born deaf, who have never heard and doesn’t see the deafness as a sensory loss but as a culture, a community, a whole world, may be different.
Many thanks to both for sharing it with our readers !