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Jul 132012
 
Cochlear Implant

The Cochlear ear implant is  a medical miracle and don’t I know it.

This is a piece about hope, it’s about trying to inspire people not to listen to doom sayers. Sometimes life can treat you harshly, but many people have and continue to have almost unbearable obstacles. There is always light at the end of the tunnel but, you must balance this against reality. I reached a stage when I lost hope. The Cochlear implant gave it back to me.

Wasn’t it Albert Einstein who said,“If at first the idea is not absurd, then it is not worth pursuing.?” This is my story about pursuing an absurd idea and eventually realising it. It never happened overnight, nothing ever really does.

My absurd idea was that as a profoundly deaf person, I would get my hearing back. It was a medical breakthrough which realised this.
I was the 13th. person to have this in the whole of Africa and I am not sure where I stand in world rankings, but I have to be one of the pioneering patients?

I am going to tell you about my own personal experiences. What it took to get it in the first place and what it is like to use. It always amazes me how little people know about this and by that I mean people, from all walks of life. I fervently hope that by penning these few words, that I might be able to shed some light on this remarkable medical achievement.
I’m also going to explain the differences it made to me , especially towards enhancing my life and my families life. It is the Cochlear Ear Implant, more commonly known as the ‘Bionic Ear’.

Brief Summary from a Layman.

How the Cochlear Implant works.

How it works.

If you have a look at the sketch and I will try and describe the process for you. Firstly, it comprises of three main parts, in my case a Nucleus 22 cochlear implant. That’s that thing inside your head and around the cochlear.Secondly, a speech processor, that’s what you can see on the outside, hanging onto the ear.Thirdly, a transmitting coil and cable, that’s what is going from the processor and attached to the outside. Inside your head the surgeon has attached a magnet and there is another one in your transmitting coil, when you align the two, the magnets attract and hold the coil on your head.Sounds are received by the microphone on the top of the speech processor or it’s inbuilt telecoil or a mixture of both. The speech processor codes these sounds and the transmitting coil sends these to the cochlear implant. Then electrodes in the implant use this information to stimulate the cochlear’s hearing nerve fibres and these fibres relay the sound signals to your brain, so you can get hearing sensations.
Inside the speech processor, there is a computer chip where speech and environmental sounds are coded and they then transmit these signals to the electrodes on the implant, which electrically stimulate the nerve fibres, giving sensations that the brain perceives as hearing.

The beginning of my Cochlear journey.

Hearing about it in 1974.

I first heard about this when I was still living in Rhodesia about a year after I went deaf. To the best of my knowledge this was first started by a Professor House, in Los Angeles, America.Needless to say I was mad keen to have it at this stage in my life, but now the problems started.Cochlear journeyI needed to raise all the capital to pay for this and it was extremely expensive. Firstly, I would have to stay in L.A. for a minimum of 6 months and that was not counting the cost of hospitalisation and the surgical costs which don’t come cheap, even then. Sadly, my parents although reasonably wealthy farmers could not afford this. Then I was told that as my accident occurred in the army, that they would finance this. However trying to get hold of the Colonel in charge of this was tough going but eventually this occurred. He was OK but, they didn’t want to really finance this if they could help it. The long and short of it was that they believed it was still in the experimental stage and they would not finance it accordingly, unless we (my parents and I) could show compelling evidence to the contrary.Saddened and disheartened by this we went about gathering the evidence. Moreover this took a long time,being Rhodesian we weren’t exactly the most popular people in the world at that time.At long last we had gathered enough evidence and took it back to the Army. Well, lamentably, they then turned around and said, ”in that case if there is anywhere in Africa within the next four years that the operation could be done they would not finance an American trip?”
Sadly, there was nowhere and within that time that despot Mugabe, had risen into power, so that angle was lost to me forever. Our country, now became known as Zimbabwe.

Trying to find out more about the cochlear implant?

A visit to America to the Cochlear inventor.

In 1981, I decided to visit America with the intention of ending up in Los Angeles and visiting Professor House about the Cochlear implant. But firstly, New York, then Nantucket, then Boston, Miami, Houston and finally LA. I’m not going to bore you with my American trip, except to say; what a magnificent country and such wonderful, generous people IE.I met a couple of guys in a pub and we had a real party(well it’s nice to be young) and we arranged to meet again for lunch the next day. It ensued that one of them had a dad who was head of Chase Manhattan Bank and he told his dad what my plans were, whereupon his dad promptly offered to pay for me having an implant, all expenses paid. Can you believe it? Unfortunately, I could never accept charity and I never will.Eventually I got to LA and saw Prof. House and he said that within the foreseeable future there would be no improvement in the implant. Still only implanting one channel, or electrode. At this stage, I had passed my Diploma, was playing 1st.class cricket, had no real problems with women and was more or less used to being deaf, so I went on hold; but God bless America.

Leaving Zimbabwe.

Getting closer to finally having the cochlear implant?

I was still farming in Zimbabwe, but already things are deteriorating rapidly. Then in 1983 I got married and in May 1984 my first daughter was born and we named her Dagny. Very shortly after she was born I had finally had enough of Mugabe and his

Visiting Cape Town, for my Cochlear assessment.

regime and decided to move.I have no regrets in my life, but I have to say that at this time I made the biggest mistake in my life. My wife was mad keen to go to Australia, but I couldn’t handle the politics of the country at that time, saying to myself, that anywhere that could choose a union leader as Prime Minister was not for me. In retrospect it was a massively silly mistake, but whats done is done. The other option was Ireland but no-one was really keen on this. Anyway I went to look at South Africa and was offered a job there as a Farm Manager in Nelspruit and decided to take it up.I left Zimbabwe with $500 in my back pocket and a wife and 3 month old baby. Within the space of a year I went into partnership with a friend of mine and leased a farm. He carried on working where he was and I ran the new place. Three years later we dissolved the partnership and I bought the farm and thereafter went steadily downhill.

In 1989 on a routine visit to my Doctor he mentioned to me that he had just done a call-up (routine spell in the Army ) and one of the chaps with him was a Surgeon who had just been allowed to do the cochlear implant. The first ever in Africa. He arranged for me to visit him in Cape Town at Tygerberg Hospital.

Nearly there with the Cochlear implant.

Preliminary Cochlear implant tests.

Well I had a preliminary appointment with the

Tygerberg Hospital, where the Cochlear Implant was done.

Cochlear Ear Implant division at Tygerberg Hospital in the Cape. Amongst great excitement my wife and I had to plan getting there which is a three day drive from where we lived and that’s pushing it. By this time I had another baby, this time a boy Michael. So we arranged for them to stay with neighbouring friends of ours and furthermore had to arrange someone to look after the farm etc. as the tests would take at least a week and then all the accommodation to arrange in Cape Town which has to be one of the most beautiful places on earth.At this stage of the Implant no-one was sure of the long term effects of having an electrical device so close to the brain. Consequently you had to undergo deep physiological and psychiatric assessment and this took a couple of days. Then onto the great man himself Professor Wagenfeld, who would do the surgery, for like a preliminary assessment of your worth. I hasten to add that at this time they would only implant people who were profoundly deaf and certainly not children for the reasons listed above.This is a very complex surgical procedure and requires people of extraordinary skill and in Prof. Wagenfeld we had a master and I think he was already a professor by the time he was 26 years old, so you can see the calibre of the man I had.

Well I got the go ahead from him, Physiologically but there were still a lot of tests to undergo. So out of the surgeons hands, for the all the other tests and after awhile I had just about had a bellyful of them all as found them to be so nice and largely patronising.The last test involved lying deathly still, whilst the doctors inserted a long needle through your eardrum and hooked it up to the computer to see if you had any residual hearing left at all (nerve fibres). By this time I was truly petrified and you got to try and lip-read them while they say “can you hear anything?”This was in my right ear and the answer- NO! By the time they had unhooked everything and were holding a post- mortem, all my dreams had been shattered and I had waited 20 years for this, so was in a foul mood. When they said I must come back later and they would try my left ear I gave them a piece of my mind and stormed out of the hospital like a petulant child.Eventually my wife found me in the car park and tried to talk me round and I can remember saying, “what for I’m so far gone nothing can help me?”But what she said was that we had come all the way here and I had nothing to lose and while here do everything. So I went back and had the left ear done and heard something. EUREKA. So we set a date for the surgical procedure and went back home.

Leaving for the cochlear implant operation.

Nearly there.

Back home and a mad dash trying to sort everything and talk the Bank Manager into extending my overdraft so I could pay for

Table Mountain Cape Town.

everything. To my eternal gratitude he was all for this and gave me a lot of concessions and to this day is one of the finest men I have ever known.Then a big party was held for me at my neighbours Willie and Sherry. When I got there, I could not believe how many people were there and was slightly taken aback. Later Willie made a speech and presented me with a cheque. Unbeknown to me he had organised many farmers and had arranged for them to donate a tobacco bale each with the proceeds to go towards my Implant.It was a size-able amount of money and was just the cherry on top of the cake. I mentioned earlier that I don’t accept charity, but I was staggered by this and knew it would be extremely churlish to refuse, so gratefully accepted and made an impromptu speech.

Shortly afterwards my wife and I flew down to Cape town for the op. Everything went like clockwork and I spent about a week in hospital, then flew back home. It takes about 3 months to heal and then back again to the Cape for what we termed “Switch On” for when they finally hook you on to your Speech Processor to ascertain whether you can finally hear or not.

SWITCH ON: THE GREAT DAY:

I get my cochlear switched on and  can hear again.

Before I forget, remember when I was in LA and had been told that in the foreseeable future there would be no improvements.

Clifton Cape Town, visiting all the beaches to test my Cochlear.

Well here I was 9 years later having been implanted with 22 channels not one. The technological advances in such a short time are mind blowing and they get better.The next process would take about 6 weeks so decided the family could do with a holiday. So we drove down to the Cape, hired a house on the beach front. The wife and kids had a ball while I trotted off to the hospital.What happens is they attach your speech processor to a computer and gradually bring you up from when you can first hear up to comfortable levels. I won’t go into details as it is quite complicated and already this piece is long enough and there’s still more to go.

Well YESIREEEEEEEEEEEEE I can hear again although it’s so different.

Then came a long process of rehabilitation, which basically entails teaching you how to hear again and recognising everyday sounds etc. It’s also complicated. It takes about six weeks and then you are done, fine tuning you along the way.

To the best of my knowledge what happens is that your brain has forgotten what sound is and has to be taught again. Also depending how severe your nerve loss was. In other words every patient is different and some do better than others.

Essentially, if you have been profoundly deaf for 1 year you are going to do better than me after 20 years or similarly, if your nerve loss is less severe you will also do better.The wife and kids flew home after a month and then when I was ready I drove back home.

On the beach after I had just been ‘ switched on.’

Learning to listen again with my Cochlear Implant.

Me and my two kids at that time

Me and my two kids at that time

Me and my two kids at that time

 

My honest impressions of the cochlear implant.

In the beginning and four years later.

It’s a tough call, depends where you are coming from. In the beginning they asked me to write an article for their magazine, on

Fish Hoek Cape Town my favourite beach after the Cochlear.

my impressions of the Implant. Truthfully, I knew a deaf joke which epitomised it for me and wrote that. Well everybody was furious with me and was barely on speaking terms and my wife said, ”what do you expect Kevin, it was a stupid thing to do.”Years later I saw this joke posted all over the implant division and thought to myself, “well they finally learnt”. Of course they never published it.However eventually they published something. Actually I was no.13 but they thought that was unlucky, so here goes;Kevin Moor(No.14)was here in May and wrote the following. ( 17 years ago.)

“I have never written an article before, as I have been afraid of hurting peoples feelings. I’m nothing, if not a realist. When one has experienced the spiritual earthquake of the words,you will never hear again, then the greys go out of the window and all that you are left with is black and white. It has coloured my thinking for the rest of my life.I can still remember Shirley Bassey singing the theme from Love Story- Where do I begin to tell the story, the sweet love story, that is older than the sea? Where do I start?That’s my particular dilemma with this article. Well anyway here is my love story.When I consider how much I used to be able to hear and what hearing is like for people without any related problems and I weigh this up against the implant. THEN IT IS A VERY SCARY SECOND BEST.However, when I weigh it up against being deaf and then having the implant, it is so great an achievement that it defies description. The years of study and knowledge and devotion to come up with this implant. The skill. The services of a great surgeon like Professor Wagenfeld. The devotion and love of Lida and Jenny on the rehabilitation scheme. The endless patience. Then I have to hang my head in shame, when I’m disappointed because it isn’t perfect. But how does one define perfect? Quite frankly I’m in love. I gave up feeling sorry for myself years ago. It doesn’t help. I also gave up hope; the implant gave it back to me. It’s a priceless commodity.I’m not worried any longer about too many imperfections. Love is blind! I’m just glad that I am the recipient of all this knowledge and skill.
I’ve never really thought about it before. About what it means to me. I cannot list advantages and disadvantages. I just feel privileged that the quality of my life has been enhanced. You cannot ask for more. It may not happen in my lifetime, but it will happen, that the total breakthrough will be made. It must be nice to think that something in each of out case histories might lead to this. That we were part of the Pioneers; to all of you responsible for enhancing my life- thank you.P.S.If anyone has second thoughts about having the implant – Don’t. It’s worth it – truly – I know
Kevin”

HEARING AGAIN WITH THE COCHLEAR IMPLANT.

Taking time to get used to it.

Well it takes a bit of getting used to. Essentially, in my case anyway, you just hear sound. Simply, I will hear you talking but I

Muizenburgh beach Cape Town.

won’t understand what you are saying, so am still reliant on lip-reading. Subconsciously however, you are hearing more than you realise, so your lip-reading skills tend to take a dive.With somebody I know well and who knows how to talk to me;(the wife for example). I will get 60% of what she is saying to me without having to revert to lip-reading. That’s only if I have a clue what her subject matter is, without that, I would be lucky to get 10%. With people I don’t know so well, the percentages come down.It’s still a miracle, whichever way you look at it. Learning to understand music again was a big battle and was undoubtedly the thing I was most looking forward to. Initially I could not make heads or tails of it and was disenchanted.But by persistently practising listening to songs I could remember and reading the lyrics whilst I was listening, I finally began to hear the singing again. As it turned out my two favourite songs;

1. A Whiter Shade of Pale
and
2.Bridge Over Troubled Waters

I could never follow them. Lately however,with my latest upgrade I can follow both these songs and this gives me enormous pleasure.

Another Cochlear miracle.

My son.

From the time he was small, my son, never really saw eye to eye with me for some reason, totally beyond my

My son and daughters at his 21st.

comprehension.Very soon after the implant, we were having breakfast together and when I turned my back on him to go back to work. He called me, I’m not going to pretend I got what he said. The point is that I heard him, stopped and turned around so I could lip-read; whereupon he asked, “can I come with you?”.So I put him on the motorbike and took him to the lands. From that moment we were mates. Consequently, I’m forever grateful for the Implant. There he was always seeing his dad walk past him. Oddly this was never the case with Dagny. I guess, every body’s different? Well those are my three kids as seen a few years ago at my son’s twenty first birthday party. A lot of water has run under the bridge since then too.

Technological advances with the cochlear implant in my time.

A child cries for the first time.

My second speech processor.

When I had my first Speech Processor, it was about the size of a small novel and I had to wear a holster over my shoulder to support it.

However, the technological advances since the beginning, have been staggering. Shortly after my first one. I got an improvement, known as the Spectre 22 and it was about the size of a packet of twenty cigarettes. My current one is the Esprit 3 G, snazzy hey! I hope that now gives everyone more of an idea of the amazing advances. So sorry but cannot seem to find a photo anywhere of my original. Comes from being obsolete. See my processors here

Now they are implanting children with 24 channels and there is even more improvement in the processor. Unfortunately I could only get that by being re-operated on, but the technology is superior.

My wife being a nurse was always scared of having a Down’s Syndrome child for some reason. When Dagny was born, she had a faulty hip and we had to tie her up in a splint for the first few months of her life. Then when Michael was born, he had something wrong with his head. At 3 months we had to have him operated on. Dagny represented Zimbabwe Schools at tennis and hockey and Michael has a degree with first class honours in Aeronautical Engineering. So all’s well that ends well.

However, after we had had them both, the wife said that we had two children and both had had something wrong, so no more and we had a boy and a girl.

However after the implant she said to me. That I had never heard my own child cry for the first time and that she thought it was special. Now that I could hear, maybe we should try for another.

As it turned out. Two days before she went into labour, I was playing squash and ran into the wall and broke my Speech Processor. After all that effort and I still couldn’t hear my child cry for the first time. It was a case of third time lucky as Siobhan was perfect with no medical problems.

When she was about seven we told her the story and she went and told the whole school. Her comment was, “I’m so lucky to be alive.”

Siobhan: So lucky to be alive.

We are so lucky we had you.

Thinking about the cochlear implant?

Pause for thought?

The last thing that I want to say is that since living in Ireland, my case has been taken over by Beaumont Hospital in Dublin and it is GRATIS.It’s given me a lot to think about.The government basically pay for the Implant for profoundly deaf people.I always made my own way, more or less.Which do you think is right?

Postscript on the cochlear implant.

Human nature.

When people still ignore me and think I am a dummy and no matter how many times it happens it still hurts and makes me feel

The Flame Lily.

small. I understand it’s part and parcel of human nature and to console myself I always think of this song and the words.I think John Lennon wrote it and he sure was a gifted man. Sorry but it’s just what I think.

” The long and winding road, that leads, to your door,
And anyway, you’ll never know, the many ways I’ve tried?”
The other thing to remember is of course, between modern medicine and modern innovation, the things that are available now are almost beyond belief. One also has to remember that Alexander Graham Bell invented the telephone largely in fact because he was trying to work out ways to help someone he loved who was deaf. The great invention was then used by hearing people to deny deaf people working opportunities as they couldn’t use the telephone. Guess what? Now we can and even more so with the implant. God does in fact work in mysterious ways?

  29 Responses to “Cochlear journey of inspiration and hope.”

  1. Spook – to me, one of the most important lines are that people don't rate a deaf person as having a problem – it's only when it's taken away that one realises life rotates around it. I like your drawings and descriptions – but without doubt, I like your resilience and tenacity through a huge ordeal – I'm not sure I would have had the patience you had. Thanks for a great article that can help many others.

  2. Thanks for that Spook – I now remember learning about the importance of the hair and the vibrations – great point. Would you consider hair implants?

  3. Patrick Lawless, has got 2; it is illegal in the UK to discriminate against anyone with a 'disability'. I feel the waves of frustration; because my father was deaf, my brother is..and I think it also very isolating. You are a tenacious guy…..have a Bell's. xx

  4. What a wonderful and inspiring story, Spook.

  5. I have had to read your story 3 times as the tears just kept pouring, what an adventure your life has been, your inner strength is mind blowing.Thank you for sharing your life story with so many of us.You really are one very special person.xxxxxx.

  6. Great piece on your journey from start to the implant Spook Moor. An educational piece I wish everyone could read to implement their understanding of the impact of hearing loss, the frustrating journey to adjust, the cochlear implant and disability in general. All the Best!