Graham Hicks: My experience of having a cochlear implant as a deafblind person (BSL)

I should begin by saying that I’m deafblind. I was registered blind when I was 3 and by the time I was six it was noticed that I wasn’t hearing that well. Both my sight and hearing continued to deteriorate and by the time I was 15 to 16 I could no longer hear speech. I have read braille since I was 7. At about the same time I ceased to be able to hear speech, I learnt the deafblind manual, which I have used ever since.

In 1989 it was first suggested I might benefit from a cochlear implant. Tests however showed that they were not sure of a good outcome so they didn’t want to implant. However, about two or three years later, I was contacted by the hospital saying they were now more confident and would like to reconsider me for an implant. But having thought about it I declined the offer. I felt I was happy with using deafblind manual and didn’t see the need to have a CI.

My view was not universally shared and I remember someone saying to me: “wouldn’t you do yourself a favour and make it easier for other people to talk to you?”

It was some years later after marrying a hearing woman that I thought again. Maybe I should go for it, maybe it would be an advantage if I could hear speech again. So I went to see the ear experts and duly got a referral. The hospital decided that I was suitable for an implant and the date was set for the op. But I had a last minute change of mind and cancelled it. Why? Because I was concerned it might impact on my ability to continue with my favourite sport, jetskiing. After making this decision my wife shouted at me in a rage “I was looking forward to having a hearing husband”. Odd really because apparently she’d already decided to replace me with another man, who yes was hearing!

You may be thinking that’s where the story ends, but if this was a paperback you’d be able to feel from the thickness of the book to your right that the story is not about to end.

It was years later and I was in another relationship. This time with a lady with a moderate hearing loss. I became convinced that having an implant was the right thing for me and I found myself visiting the ear experts once more.

This time it was for real. The operation went ahead in May 2006. When they turned it on I did start to hear things including some of what people were saying. But I also experienced electric shocks to the head. They explained that they were having to turn up the current for me to hear anything and this resulted in the current spreading into other nerves which caused the pain.

Over the course of the next few months I had countless tuning sessions but it was to no avail. In the end they decided to try replacing the implant with another. This took place a year after the first. When switched on however it very soon became clear that all was not well. Again they needed to turn up the current too much and I also now got facial twitching.

But that was not all, the sound was very poor. I couldn’t hear any speech with it. Worst of all the operation had a very profound and immediate impact on my balance. I noticed it as soon as I tried to get out of bed after the operation. I had to hold onto the furniture, the wall, whatever. The hope was it would stabilise after the operation, but instead it continued to deteriorate and has seriously affected my quality of life. I can no longer get out and about independently – the days of my travelling alone on the train all over the uk and beyond are long over. I’m trapped at home and can only go out when I have a guide.

I have long since given up using the implant (that I gave up so much for and had hoped would transform my life and open many new doors). Instead it shut more doors and I have no chance of getting around or getting a job out in the community.

In addition having lost the hearing in one ear I no longer have directional hearing. That’s a problem if you are just deaf but a far bigger problem if you are blind too and can’t look round to see where the sound is coming from.

So what help did I get from the ear experts when it went wrong? Well, lots of tests, more and more tuning sessions and the offer of yet another implant to see if it might work better. But that was about it. I’ve never had any help with the major impact all this has had on my day to day (and every day) life and my mental health. Nobody at either of the hospitals I’ve attended appeared to have any understanding of how serious it would be if it didn’t work for someone who is deafblind as opposed to sighted-deaf.

It’s as though they never stopped to think about it. Indeed were they even aware? What training do they have in deafblindness? Subsequently there was no help for me. I was left entirely on my own to face the reality of losing my balance, directional hearing and independence, (not to mention the loss of job opportunities for life. Not once has the hospital shown that they recognise the severe life changing impact this has had on me. Nor have either of them offered any compensation or support that addresses my loss. If I’d had any idea how seriously wrong this could go would I have ever considered going ahead? Of course I wouldn’t.

I bitterly regrate having had the implant. It’s turned my life upside down. Rather than bringing any benefits or advantages it’s clearly added more disadvantages. I never knew it could end up anything like this. Why wasn’t there someone in the ear expert team with the training, knowledge and understanding and insight of how this could go wrong for a deafblind person. And who’s job was it to discuss this with me before making the decision to go ahead?