The Nature of Progressive Deafness

When I tell people that I now have a cochlear implant, there are many questions that arise – and I’m always happy to answer them. Having a sense of curiosity is never a bad thing, it helps us to learn about others and the world around us. There were times when I was growing up that I wished people didn’t have this fear of asking me about my deafness; it’s such a big part of my life that I don’t mind talking about it at all. Let’s grab a virtual cup of coffee and talk as long as we want.

Last night a friend – who is also deaf – asked what made me decide to get a cochlear implant. When I speak about it, I sometimes forget all the many, many reasons. So, here I am, attempting to put into words all the little – and big – things that made me decide to go ahead.

The type of deafness I have is a progressive deafness in both ears, due to the tiny hairs in my cochlear getting damaged and not working as they should. The process of hearing is fascinating, and if you don’t know much about the journey of sound in your ears, then I urge you to research it…there are many different things at work to enable you to ‘hear’. The cause of my deafness is genetic, yet it was a shock for my parents when first my sister was diagnosed as being deaf, and then me, because there was no real history of deafness in the family.

Being progressive meant that my hearing could suddenly drop – which it did, 5 years ago – and to go from experiencing the world around you with one level of hearing, to having your world change in the way you hear it is not an easy experience. My hearing had been fairly stable throughout my childhood and adolescence, only dropping slightly here and there in ways that were barely noticeable.

When I was in my early 20s, I was listening to music one day through my headphones; someone needed my attention, so I pulled one of the headpieces away…and heard nothing. My first thought was that something was wrong with the headphones, so I swapped them over to different sides…but the same thing happened. My heart sank. It had been one of my biggest fears, that I would one day lose the hearing I valued so deeply. It wasn’t much, mostly low frequencies that were close to normal hearing levels and hardly any high frequencies, which is called a ‘ski-slope’ hearing loss, but it was mine. It was my way of hearing the world, and, oh, I loved it. Music was mostly drums, guitars, bass guitars, and I enjoyed music festivals for years.

After hearing tests confirmed a drop, I was sent away with new digital hearing aids to get used to. They were powerful little things, and my world was now infused with as much noise as I could hear through them. Music changed, of course, and it took a while – a couple of years – before I could fully enjoy it again. Voices were better than before, though, as I could now hear high voices as well as low voices. However, it was incredibly difficult to accept.

My heart truly broke when the tests confirmed that I had lost the hearing I loved. There is nothing wrong with being deaf, I have believed that for a long, long time, because there are many positive things about it. Even so, even though I knew this, it still hurt that I had to adapt to this new reality of what I was hearing. I had counselling – CBT – in the summer of 2011, to help me to change the way I thought about it. It helped a little at the time, but it didn’t deal with what had happened; instead, it was like putting a small plaster over a much bigger problem. I pushed down on the feelings, and was focusing on how I presented myself to the outside world. I remember being immensely upset inside, and realising that to everyone around me – unless they knew – I looked exactly the same as I had previously, but to me everything was different.

In one of the CBT sessions, I brought up the fact that I worried about the future; I thought a lot about the time when I would be starting a family, and was scared that I wouldn’t be able to hear my baby cry, or hear their first words, or even understand them when they’re speaking…and all these things are important to me. My therapist asked me about my perspective on deafness, and I told the truth, that there is nothing wrong with being deaf, and I know many deaf people who lead happy lives, who don’t let their deafness hold them back; but it didn’t change the fact that I had this sense of grief over the hearing I had lost, and that I was struggling to adapt to my new reality.

Since that time, I have learned that it is the same for many people. There are so many causes and reasons for deafness, with a huge variety of experiences, yet for some there is a sense of grief and despair when they lose their hearing. It is an isolating experience, and each person needs to deal with it in their own way, in their own time. One thing that helps massively is to talk to people who understand, other deaf or hard-of-hearing people, who have been through similar experiences. However, for some, especially those who unexpectedly have sudden deafness, it can be hard to know where to look. I was lucky to have my sister, we’ve always had a special bond, and I knew that I could always talk to her; yet I still needed this time to grieve and adapt.

Over time I began to accept it for what it was, and whilst I still carried this sadness inside of me, I knew I had to try and move on. Then a few summers ago, a friend, who had become deaf suddenly, went through his own cochlear implantation that summer. It opened my eyes to the transformative powers of the whole experience. It’s not an easy journey to undertake, and it does carry it’s own set of risks, but if the situation is right for you, then it can be a great thing. We spoke a lot about his own journey, and about how he was adapting to his new world with his cochlear implant. He is a fellow music lover, and it was incredibly comforting to talk to him about music and how he was reconnecting with everything around him. It gave me hope, something I didn’t even realise I had lost.

This summer, when I was deciding whether to go ahead or not, I met with him to talk about his experiences again. It had now been 2 years since he had his operation, and it was lovely to see how he was getting on.

When the time came to give an answer, I decided to go ahead, even though I still felt like a bundle of nerves and doubts flew around my mind as often as the reassurances. Once I decided, I slowly began to tell people in my life; prior to that point I had mostly kept it to myself because I didn’t know what the future held.

I knew there would be a day when my hearing would drop again. I knew I would lose the limited music I could enjoy (mostly songs I knew from before my hearing dropped). I knew I would move further away from the hearing world. I knew I would slowly lose the voices around me. I knew that the daily struggles would increase. I knew my quality of life would depend greatly on the people around me, and there is never always a guarantee of meeting people who will be deaf aware.

I wanted a future where I could continue to communicate well, whichever communication method I use. I wanted a future where I wouldn’t have to worry so much about losing more of my hearing. I wanted a future that would continue to get brighter, not darker.

That’s not to say that it was an easy decision. I had times where it all got the best of me and I would break down in tears when I talked about trying to decide what was best for me. It is a very personal decision, which occasionally made it harder, as there was only so much advice I could seek from those I love. In the end, I had to make this decision by myself, for myself.

The nature of progressive deafness means that there are no certainties when it comes to your hearing. You could be lucky, and travel down this road of life with much of your hearing still intact before it decides to throw a tantrum and lose some of the sounds. Or, you may gradually lose your hearing over the course of a few years. Or, it may sporadically drop at random points throughout your life. There are so many different outcomes with progressive deafness.

I didn’t know when I would experience the next drop in my hearing, but since I had reached the stage of profound deafness, I knew that whatever happened in the future it was not going to get much better than what I had (for me – some people cope remarkably well with hearing aids). Cochlear implantation offered a chance to change the course of my future.

Let’s grab that coffee sometime soon?

Happy Saturday.

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2 Comments Add yours

  1. Alvan says:

    Ah So much I can relate to. I too have progressive hearing loss. Was diagnosed at 8 and fitted with hearing aids. It’s such an invisible condition. It’s too easy to overlook and ‘forget’. What made a real difference was finally discovering an entire community out there who went through the same experiences, feelings, struggles, that and the fact I’m not alone. We are not alone.

    Like

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