Empathy not Sympathy

I'm going deaf, at least I think I'm going deaf. It's hard to tell - I have tinnitus.

I realised for once and for all that this was becoming quite extreme while having my most recent hearing test. I was really struggling to differentiate the electronic bleeps from the cacophony in my head. The results were bleak, quite a drop from the last test only months previously. As a result, I am still not clear whether my actual hearing is affected, or whether it is the wall of sound I am trying to hear through that is causing the problem.

When I tell people this, in the hope they will understand why I sometimes either apparently ignore them, or give an answer to a question they hadn't asked, they quite often say, 'oh, I have that too'. While I don't deny loads of people have some level of background noise in their ears, I question their understanding of the severity of symptoms in some cases. Being an 'invisible' problem, some folk are highly sceptical and give me a wayward look that tells me they think I am exaggerating, or making a fuss. I tend not to go into detail as it can sound whinging and attention seeking. These people will start to realise after they have been around me for a while anyway.

On the other hand, some people are magnificent in their understanding and patience. I have found this with my colleagues at work, who have become used to repeating phrases several times and letting me know which phone is ringing. I have been given leave to attend lipreading classes and audiology appointments, and have been given a headset to enable me to hear better when answering the phone. In our most recent office move, I was able to select a seat the reduced the amount noise behind me, which even after an hour, made a considerable difference. I have also taken ownership of a hearing aid, but sadly this doesn't seem to have helped as much as I hoped - if at all, if I'm honest.

The whole experience has been an insight into how life changes when you lose one of your abilities. Gradually, almost without realising, I found myself reluctant to go for meals in groups. In a noisy restaurant I can just about follow the person sitting opposite me, using some lipreading as a backup, but stand no chance of joining in anything further along the table. After a couple of incidences where a well meaning person has tried speaking more loudly across the others, and me ending up feeling embarrassed, I started to withdraw into my shell. I am a very sociable person and it is odd to start to notice behavioural changes like this.

It can be difficult chatting on the phone too, especially if the caller is speaking quickly. Mobile phone conversations can be next to hopeless if I am out and about, due to all the background noise. I now rely much more on texts and e-mail than previously, but how lucky I am that this technology is available.

Stress aggravates the tinnitus, which can quickly trigger a downward spiral. As I become increasingly anxious on missing words, the tinnitus gets more obstructive and I miss yet more. However, it has been really illuminating to learn how my brain works with all this. I particularly remember one conversation around a dinner table. I was only hearing about one word in three, and I became aware of a process happening in my head that can best be described as being like an elongated fruit machine. The words I heard fell into place, but with wheels of other options spinning around in the gaps between. My brain was busily spinning the wheels around looking for a combination that made sense. I could almost hear a clunk, clunk, clunk as the 'cherries' fell into place then, hooray, a sentence emerged. I answered the question and everyone around the table fell about laughing - it wasn't the right one. Humiliating yes, but fascinating too. When you have problems hearing it slows down your thought processes while you work out what makes sense. Even when you do hear, you have lost so much confidence in being able to compute the information, that you still take an extra beat or so to respond. The extra time, even though relatively short in real terms, can make you look or feel 'slow' and compound any lack of confidence. It's also exhausting, the additional concentration you have to put into every exchange to just keep up is quite considerable.

The lipreading classes I recently attended were run by a gifted teacher. It felt very reassuring to be surrounded by people who understood hearing problems and learning common-sense strategies for dealing with day to day problems. Other teachers weren't so gifted, and I was saddened by a couple of others who came into the class and made me (and probably the others) feel a bit 'dim' by the manner of approach. One teacher from another class came to speak to me, putting her face very close to mine and mouthing the words in a greatly exaggerated manner, which had the effect of making me feel very small indeed. I do understand that she was trying to be helpful, but sometimes even the best intentions can be 'cloying'.

We were told in the lipreading class that 'lipreading' is really the wrong term, it should be considered 'facereading' as you use subtle changes in expressions as well as the lip movement to help decypher words. Not surprisingly, I had already become adept at spotting the gentle expression of faint confusion coupled with mute graciousness when I do answer a question that hasn't been asked. My heart sinks when I see that one.

I have been moved by some other people's reactions though, I have already mentioned my colleagues, but I went into a local coffee shop recently, and the chap behind the counter was making polite conversation. I have no hope whatsoever of hearing anything with coffee machines hissing away, and we were in a stressful stalemate of me saying 'sorry, sorry, I can't hear' and him patiently repeating again and again. He then, very thoughtfully, came out from behind the counter, thought for a moment, and chose different words to use. I finally got the message and almost wanted to cry with relief that someone had insight into how to defuse the situation.

The very worst thing someone can say is 'oh, don't worry' and then to shut off. It makes you feel completely worthless and depressed. It is also a mystery to me how no reasonable person would ever make fun of someone who can't see, but still think it is funny to poke fun at those of us with a hearing problem. If I hear one more person go 'pardon?' with a cheeky smile after I have explained about my difficulties, I won't be responsible for my actions.