Another thing people don’t understand about severe hearing loss; I don’t think they understand the pain of it.
I’ve written before about how helpful I found some counselling sessions in 2017, when things were at their worst. The most helpful thing the counsellor did, in hindsight, was to give a name to my emotions. “I’m hearing a lot of grief” she said. Naming it was powerful. Yes, it was grief. It was a very profound grief, akin to losing someone very close to me, because indeed I had. I had lost a part of myself. Not just my hearing but my confidence, my personality…….quite a lot of “me”, in fact.
I’m writing about this again because, now that I’m able to look back from such a vastly better place, it seems even clearer what was going on. Now that I’ve got “me” back and have picked up the life I was happily living before 2017 the pain of that period seems both a long time ago and, simultaneously, something I still want to write about and understand.
Many aspects of deafness are invisible to the observer and it can seem to other people that nothing much is wrong. Of course, to me, everything was wrong.
The fact that I couldn’t talk easily to my own husband in our own house was “wrong”.
The fact that I was having to give up some of the things I’d most loved doing was “wrong”.
The fact that I was aware of having become a very different person was “wrong”. I became quiet and withdrawn. I’ve always been comfortable in my own company but I came to positively yearn to be on my own. If I was out walking with the dog or pottering around the house doing stuff that didn’t involve my ears things felt OK; I could kid myself that things were relatively normal. But when I started to try to engage with the world I’d be confronted, devastatingly, with the fact that things were far from right. It was all very, very sad (massive understatement) and I was sinking.
Did other people realise? Other than Nigel of course. He saw my desperation every day. Indeed he was affected as much as I was; his wife had become a different person. He was my rock, and I depended on him, but life for him was just as hard.
Nobody else saw quite the full extent of the problem, partly because I had my best “brave face” on. I didn’t want to admit how bad it had got. I was horrified at the thought that people might feel pity.
Actually, I suspect that people I didn’t know very well just accepted me as a quiet sort of person who kept herself to herself. Why should they think anything else? That’s who I was then. Of course, there’s nothing wrong with being that person (quiet, introverted) if that’s who you genuinely are, but it wasn’t who I was. That was the pain of it.
As I said in the film, I felt like I’d gone over a precipice. I was desperately clinging on to the life I was used to living, but it was slipping away. I was falling and it was very, very frightening.
A lot of people don’t “get” this, about deafness. They can’t “see” the pain of it in the same way that they can “see” the pain of some other disabilities. I can understand why, in a way, particularly when a mild hearing loss gradually shades into something more and more serious. How would an observer know that something that used to be a minor irritation has become such a massive loss? They can’t see that for themselves.
But also…….in part they don’t get it because we don’t tell them. As I said earlier, I had my best brave face on. I was carrying on as best I could. My pride kept my head up and my tears in. It all makes sense as a strategy for keeping going (to a point) but I do think that, somehow, we should do more to explain all this pain to the hearing world. Otherwise, how will they ever understand?
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