Everyone should have two cochlear implants
It’s always good to share your hearing experiences with others because, only by sharing our experiences, can we begin to make various stakeholder groups aware of just how life changing cochlear implant technology actually is. We now need to move away old old fashioned forms of testing which are relied upon to establish whether or not an individual is eligible for a cochlear implant. We should take into account the improvement in the quality of life of people with cochlear implants for they – like myself – know what a cochlear implant has done for them and myself.
I was diagnosed as profoundly deaf when I was four, was fitted with hearing aids and educated in mainstream schools. That in itself is quite challenging when you are the only deaf child in an inner city school of more than five hundred pupils. As such, I was frequently bullied. Socially, I felt inadequate almost on a daily basis. I was heavily dependent on my family, on relatives and relied upon lip-reading in order to communicate with others. Needless to say, my social circle was very small. As a deaf child, or as a young deaf adult, you tend to surround yourself with people you feel a true connection with, rather than casual acquaintances.
I left school at sixteen and went on to hold a number of temporary roles. When I was nineteen, I was actually discriminated against in the workplace. When I was twenty-three, I was implanted. Six weeks later, I made my first telephone call! Today, I have friends all over the place. As we all know, human mobility is higher than ever these days. So much so that it is quite common to have friends who reside in different countries. Fortunately, because of the phone and technology such as Skype, it is possible to keep in contact with these friends.
I feel a lot safer, because I have an awareness of sound and, indeed, of what’s going on in the here and now. I know if there is road traffic around me, and where it is coming from. Relationships in general are much richer because the relationship is not based on my dependence on the other people any more. It is more of a mutual, equal friendship. This equality is so acute that I am now able to give something back. In fact, I actually volunteer for Deafblind UK, and I look after an elderly woman on a regular basis who suffers from hearing and sight loss.
Career-wise, I moved abroad just six months after implantation, I then went on to do a Masters degree. I made new friends, my communication skills improved and I actually ‘network’ now. I learned a foreign language and am now a lecturer at one of the top Universities in London. That is in addition to the work I also do for Advanced Bionics, the company that changed my life.
Often I get asked why I chose to go bilateral thirteen years after the first implant. There were many reasons, but it all started with the realisation of how much I actually love my life. It is like wanting anything that you know will help to maintain that quality of life with confidence rather than just ‘getting by’. My current career is also heavily dependent on being able to hear.
At the end of the day, a cochlear implant is an electronic device and, in my opinion, will not last a lifetime. But it is no use waiting for stem cell and hair regeneration advancement. It is not going to happen in our lifetime. In the meantime, progress is being made with cochlear implants. Whether we are talking about advancement in voice processing strategies, sound processing strategies, or miniaturisation of the processors, everybody in the industry is working towards some improvement. Some of those significant improvements have even already arrived so, for me, it was the right time to go bilateral.
To emphasise this last point, the electrode that was launched a few months ago by Advanced Bionics is actually an atraumatic electrode in the sense that it preserves whatever hearing is there and can potentially allow for re implantation. When the implant was activated, I was amazed, because I was able to detect speech immediately with the new ear on its own. When we put the old one back on as well, I was literally overwhelmed! Within hours, hearing with just one ear felt wrong and I never expected that. You can see a video of my sequential activation here:www.HeIsNotMe.com/publicity.html
Another question I am often asked relates to how I managed to get funding for a sequential implant. It took quite a long time, but I thought about my ambitions, my plans for the future, and I wanted a backup implant in case the first one broke down. When we look at outcomes, we should consider the progress that each individual makes, and that is not only social, it is not only from what hearing tests tell us. I actually provided a detailed analysis of how much my salary had increased. Don’t get me wrong, I’m not a millionaire by any means, but the sequential cochlear implant had been paid for, especially with the amount of tax I have had to pay in the last thirteen years since the first implant!
I sent a copy of my letter about my reasons for wanting a second implant to my GP and to the Primary Care Trust after waiting a long time to get results through the conventional routes. Then, everything started to change. I had an appointment with the Consultant and, in April, I was implanted! We don’t know to this day whether or not that letter had any impact, but the truth of the matter is under the current guidelines I do NOT qualify for a sequential implant on the NHS. I regard myself to be one of the lucky ones.
So, I have now been hearing in stereo for three weeks. I want to share with you a few experiences. One day I was on the telephone to my parents while walking through a local park. I could hear children in one ear, and dogs in the other ear. Now, that is a bizarre feeling for somebody who has never had hearing in both ears before. I could also identify the sources of sound without looking.
Another experience involves my love of music. On the first day of my activation, I rushed straight home and put some headphones on. I listened to a Piano Concerto by Shostakovich, a piece of music I had come to enjoy recently with just one ear. In the first few minutes, it was strings and violins and then the piano made its graceful entrance. I could hear the strings in one ear and the piano in the other. With pop music, it was the same thing. The drums would start in one ear, a bit of bass in the other, and so on. A musician that I know, explained this to me. The reason why I heard different things in different ears is because that is how it was recorded in the studio.
Another thing happened when I was teaching at University one day. Through the windows in the main atrium, I not only saw the flashing lights on top of a police car, but I also heard the siren. The car actually disappeared into the traffic, but I could hear the siren going from my right ear all the way to my left ear, even though I couldn’t see the movement that had taken place. I had followed the moving sound source with my ears – powerful stuff!
So the conclusion that I came to were that the NICE guidelines were just that – guidelines. Don’t be afraid to question them. We go on and on about equality, but there is no equality in the NICE guidelines. Most people have one implant but should it fail the long term costs will be higher because you will need to be re admitted, re-assessed, re-implanted, and rehabilitated. My advice to those who seek a second implant is this: persevere.
We are meant to have two ears. I actually felt so strongly about my journey to the hearing world, that I decided to write a book about it. Please take a moment to visit the He Is Not Me website onwww.HeIsNotMe.com. If you would like to also receive regular information about life with hearing loss, you can ‘like’ the He Is Not Me Facebook page on www.Facebook.com/hesnotmebook.