Living with deafness and then hearing again.
Carol was born with normal hearing which meant she learned language skills. It was only when she was 20 that she noticed a deterioration in her hearing. Many other family members had experienced the same thing so she feared she would pass the disability to her children. This is Carol's story.
Carol Wright - April 2008
My family has a history of deafness. We were all born with normal hearing and then, for some unknown reason, some of us lose it during our late teens or early twenties. In my mother's family 4 out of the 5 siblings ended up with a severe hearing loss. I am one of 3 - I have 2 brothers; one is deaf and one has normal hearing. I have 4 children and so far only my second daughter Melanie, who is 27, has a hearing loss. At this stage it is not severe but we do know that it will most probably get worse.
I think I was very fortunate because I was born with normal hearing, I learned language as most children do and this gave me a good start to life because I didn't have to struggle with a hearing loss during my early years. It was only when I was about 20 that I started asking people to repeat what they were saying.
I remember as a child lying in bed trying to sleep but could not because of a dripping tap in the kitchen. When I complained to my father his comment was 'you should just be thankful you can hear it.' Years later as my hearing started to go I would lie in bed and try to remember what that dripping tap sounded like. One night about 15 years ago I went to sleep and it was not until the morning I realised I had left the tap in the bathroom running (not dripping actually pouring) and I had not heard it. I cried as it really sank in that I was deaf and my hearing was certainly not about to get better.
After the birth of my first child my hearing took a huge down turn, I was worried about what was ahead of me and really scared that I would pass deafness to my children. After my first child I even considered not having any more, and consulted two specialists. One said the more children I had the deafer I would get yet the other said it would have no effect on my hearing. Neither of them thought I could pass deafness to them. I took the second specialist's advice and had another 3 children. Sadly the first specialist was correct and my hearing declined after each birth - but then who knows, it may have declined anyway.
I was fitted with my first hearing aid not long after the birth of my first child and then about three years later I received my second one.
Deafness changed my life. I found it very difficult to communicate with people, I suffered depression, dreaded the thought of meeting new people and had a panic attack every time the phone rang. Would I know who was on the other end and would I understand what they were saying? When my children tried to tell me a secret it made me cry because I had no idea what they were saying. When they brought friends home to play after school they looked at me as if I was some kind of monster. Not many of them were brave enough to try and engage in conversation with me. I hated this but I never let them know. I was always envious when I saw other mothers deep in conversation with their children and their friends.
I could not volunteer to help at school with the reading rosters because I could not hear what the children were reading. I was also always very conscious that my own children might be embarrassed that their mum was different. On parent nights when I was expected to go and talk to my children's teachers I would feel sick for days because I knew I would have no idea what they were saying. I thought they would think I was stupid because I would give the wrong answer to questions. I was ashamed of my deafness and the fact that I wore hearing aids. Even now many people think anyone who is deaf is also dumb (stupid).
Three of my children needed speech lessons because they could not pronounce words correctly. The problem was I had no idea they had poor pronunciation. When I read a Speech Therapist's report to my doctor I was so upset because she blamed my hearing as the cause of their speech problems. I felt I had failed my children.
My hearing loss also caused problems in my marriage. My husband was not a very patient person and got very angry when I had to ask him to repeat something. This certainly did not help my confidence level. Friends drifted away both because they found it simply too difficult to communicate with me but also because I was embarrassed when I couldn't participate fully. I could not hear on the phone and certainly could not join them for coffee or a meal in a restaurant.
At the age of 35, and after 19 years of marriage, I left my husband and moved from Bunbury to Perth with my four young children. It certainly was not a fairy tale ending as bringing up 4 children between the age of 6 and 13 on my own had its own challenges without the added burden of being deaf.
As teenagers I think my children thought that to a certain extent it was pretty good having a deaf Mum. They could swear and get away with it, make arrangements on the phone with their friends to go to parties without my permission, get up and watch TV or even sneak out of the house after I had gone to bed. However, they hated it when I had to ask them to make a phone call for me.
My mother's hearing had been really bad for a long time and finally in 2001 at the age of 70 she was fitted with 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. I did not want anyone to come with me to the consultation because I was too scared my family would force my hand and the decision would end up not being mine. My hearing test with both hearing aids switched on and no lip reading showed I only understood 8% of speech. With the help of my lip reading skills I was achieving about 60%, so it was quite obvious that hearing aids really were not benefiting me much at all. Professor Atlas was really lovely and encouraged me to go ahead with the implant .
I nearly talked myself out of having the implant
We made a date to have the procedure in my left ear but I was still not convinced I was doing the right thing. I really could not see how it could improve my life. The night before the operation I very nearly talked myself out of going to the hospital in the morning. Why would I want someone to cut open my skull and insert a foreign object without any guarantee that it would improve my hearing? Thank goodness I didn't back out.
A day to remember - 27 February 2002 when I was switched on. The first sound I heard was Katrise my Audiologist counting. As most implantees do, while my hearing nerve is waking up I heard her imitating Donald Duck. My daughter then spoke and I thought she was imitating chipmunks. Oh God what have I done how on earth am I going to live with this sort of noise.
The trip home was frightening. It seemed cars were coming from all directions and the indicators made so much noise. By the time I arrived home my head was spinning. My own breathing sounded so horrible and my clothes made this incredible swishing sound. My dog had six puppies and when I walked into the house I could not hear the puppies barking. I said to my daughter "the puppies are not barking." She looked at me in shock, "yes they are they are going crazy out there." I felt so disappointed I certainly couldn't hear anything that sounded like a dog bark. What have I done!! I could not wait to go to bed and switch all that horrible noise off.
The next morning I put the noise back on and the first thing I heard were the puppies barking - and they actually sounded like puppies. I opened my bedroom door and it squeaked (I still have to fix that squeak), somebody was cooking in the microwave and it made a funny whirring noise with a high pitch beep at the end.
Later that day my daughter went to the toilet when she came back out I was grinning from ear to ear. She looked at me strangely and I said, "you will have to learn to do that a little quieter in future". We both started crying and I thought maybe this noise is not going to be so bad after all.
The next morning I returned to Lions Hearing for my second mapping. My daughter Lisa insisted on coming with me. I was not keen as it was her birthday and again I felt bad that she was having to do something for me. After the mapping they wanted to test my speech comprehension by reading a series of sentences with my implant switched on but no lip reading. After about sentence 5 I realised I was repeating everything word for word. I could hardly contain my excitement. I looked up Lisa and she was smiling with tears rolling down her cheeks. I will never forget that smile. I was so excited I lost my concentration and missed the next word, but still managed to get 98% correct for the test.
After this second mapping, sound just kept getting better and better. Two weeks after switch on I phoned my eldest daughter Trudy, the first phone conversation I had made in years. I was looking for a block of land to build a new home and I had seen one and I wanted her to phone and ask the price. Trudy rang back and said "The block is 738 square metres and the price is $198,000." I said thanks, and hung up. Then it hit me. I just stood there looking at the phone and then jumped up and down because I had actually heard everything she said. I rang her back and said "do you realise I heard you then?" Trudy who is a hairdresser said "yes Mum. I am crying here and all my clients are as well because I told them that I had just had my very first phone conversation with my Mum."
In 2005 I was preparing to have an implant to my right ear but unfortunately I was diagnosed with breast cancer and had to postpone until after I had completed my treatment and allowed time for my body to recover. In August 2006 I had the second implant and after switch on I noticed a great improvement immediately. I can now distinguish where noise is coming from. Music sounds wonderful and by switching my processor to program 2 I can keep up with the conversation even in a very noisy environment.
My deafness had always held me back at work. I commenced employment at Edith Cowan University in 1998 as a Data Entry Clerk, at the time of course I was deaf and could not answer the phone. Although I had the skills I was always passed over for promotion and was never the successful applicant for any vacant positions I had submitted applications for. Three months after my implant I was asked to undertake a six months secondment at higher duty in a different department. After the six months I returned to my regular position and my boss was so pleased with the result I was getting now I could use the telephone he had my position reclassified to a higher level. In January 2006 again I was invited to do a six month secondment period at higher duty. In January 2007 I received another promotion one that I did not even apply for, and then just twelve months later I was the successful applicant for a position as Manager. I know that without my implants I would not have had the confidence or the ability to do the job.
My Cochlear implants have certainly changed my life, I no longer consider myself deaf. I feel equal to person I meet and I love meeting new people. I participate in meetings and conduct training sessions at work and do not suffer from depression anymore. I don't worry so much about my children going deaf as I know with modern technology they will not have to suffer as long as I did.
I no longer hide my deafness. One of the first things I did after my implant was cut my hair short, I was so proud of what the implant did for me I wanted to tell the world so did not care if people could see my processor.
Oh and my partner thinks he has the best of both worlds as he can communicate and engage in meaningful conversations, and then during the night when I have switched off my processor he can snore as loud as he likes without waking me up.