Reflections....

20^th November.

Two weeks today since the operation – two weeks yesterday until switch on – the mid point! I’ve been doing a lot of reading of people’s activations lately on the blogs I’ve been collating on the links page. I’m particularly drawn to the prelingually deaf ones, and most of them are not rockstar activations. Now I know this, but I think there is still a part of me that hopes that I will buck the trend. That the fact that I have exceptionally good speech, that I have good lipreading skills, that I work hard at anything I do will somehow make me different.

I’m wondering if anyone who is prelingually deaf had a rockstar activation??

This is what made the decision hard for me to get a CI. If I had been hearing all my life and then sudden deafness ? No brainer. Those that have sudden deafness must find it incredibly hard. They haven’t built up the skills that those of us born deaf have to develop. The lipreading, the prolonged concentration, the ability to cope with the fact that when in a room full of friends you can still feel alone. In that situation whatever you get is better than what you have. And you have the knowledge that you statistically are more likely to do well.

For those that are born deaf, communicate mainly orally and then have a sudden drop that is really obvious, or for some reason can no longer wear hearing aids, it’s probably a bit easier. You know you might not do as well as a former hearing person, but you know that you can’t hear anything now so surely it’s going to be a bit better?

(Obviously for everyone there is the weighing up of the risks of surgery etc – I’m talking mainly about the possible results here).

For those like me though, I can’t help but think it’s harder. I’ve been deaf since birth, though my hearing was a lot better when I was younger. I’ve never really noticed the decline in my hearing in an overt fashion. It’s more like ….. did you ever play the game “what’s the time Mr Wolf?”? One person is at the front with their back to the rest. The kids all shout what’s the time Mr Wolf? And then move toward the front but when he turns round they have to freeze so he doesn’t catch them moving. Now as I write this I am thinking I’ve missed a bit of it – I’m sure there is something to do with it being dinner time and running, but that’s not the point! The point is my hearing in some ways is like the kids, moving when my back is turned, freezing so I can’t catch it when I look.

I don’t wake up and realise I can’t hear as well anymore. Instead I just started to find it harder and harder to cope in certain situations. I stopped using the phone to people other than certain family members and friends. I always paid with way more money than it could possibly cost to avoid having to try and understand the price (and had an overflowing  purse of change as a consequence!) I hated meeting new people and trying to do small talk. I stopped going to the cinema or watching anything without subtitles. I pretty much never listened to new music as without it being something I knew well it was just noise (needless to say I get plenty of ribbing about my music listening choices – predominately late 80’s / early 90’s – when I had better hearing, lots of time and smash hits magazine printed the lyrics!!)

However in the last 12 months or so it got worse again – but it was like the above – gradually, creeping so you didn’t really know why. I stopped wanting to go to places I’d  been a lot, with people I knew. I didn’t want to go to the heritage centre socials because it was noisy, echoey and I just couldn’t follow much. I didn’t enjoy the pub because unless I latched on to one of the two or three people I knew I could understand I wouldn’t really know what was going on. If I had to go to events I’d make sure I had a phone with me. It wouldn’t have a signal, but I could be on a game or something and pretend I was busy and that was why I was sat alone not talking. I’d even be finding myself tuned out / not following at home with a couple of friends round. The background music that hearing people seem to always need was just too much, and it got so tiring constantly asking for it to be turned down, only to have it creep up again.

Yet despite this, I was shocked when it actually reflected in a hearing test and they offered me the CI. So given the above you would think it was a no brainer right? Well it wasn’t. I was still in denial at how little I was hearing I think. I’d shrunk the situations I engaged in right down to mainly being with my family and with one or two friends. Work was very safe for me as I was never expected to make any calls and there are a maximum of 3 of us in the office – both of the others I know very well.  We never watch anything that’s not subtitled so that wasn’t a problem. My music I knew so that was fine, and I avoided anything else. Within those situations I was coping. 

So. Do I stick with what I know (and bear in mind I kept thinking they had made a mistake and I shouldn’t really be able to have one – despite the test results to the contrary!) or do I gamble? There are amazing stories of how people benefit. But I’m prelingually deaf. I might get months and months of beeps and bells and overwhelming noise and frustration. I would be worse than I was with what I know. In addition I would destroy the hearing I had so there was no going back. I don’t sign and nor do my family / close friends. I live in Orkney where there are pretty much no signing people or deaf clubs or anything like that to fall back on.

To be honest, after doing some research I think the appeal of something new was the main factor – and that is a pretty rubbish reason LOL! I was tired of doing hearing aids. I’d done them for 34 years. They were never going to get any better. The stories of people using phone’s and understanding in noise were the main appeal. That’s what I would really like to get out of it.

Right now, two weeks prior to activation, my overwhelming feelings are divided into two camps. The first is a big fear that I’m going to get the beeps and noises for months on end. That Christmas is not going to be a nice family time but a nightmare of noise and not understanding anything. That the temptation to put my hearing aid in – even though it’s my rubbish ear and its only one side and it’s not as good as two hearing aids, it is at least familiar – will be overwhelming. That my family will get frustrated at me when I can’t hear or understand. That it will ruin the two kids birthday’s we have coming up and that work will get annoyed that I can’t get up to full strength quick enough.

The other half is thinking that if I just work hard it will be fine. That I can tackle this like I can any academic subject. If I put my mind to something I work hard at it and I do well. (That doesn’t apply to practical things like art, music , DIY – which is more what hearing is I suppose so that’s a bit of a flaw!) but anyway, that’s where most of my focus is right now. I can’t afford to dwell on the other half of the feelings.  It’s too late now and it will be what it will be. We will all learn to cope, we have no other choice.

I’m researching as many listening / auditory verbal training resources as I can. I’ve found programs, apps, a few worksheets and some groups that give daily rehab exercises. I’ve downloaded some audiobooks that I have paper copies of. I’m trying to research headphones / Bluetooth links etc that will improve the quality of what I hear to start with.

And that gives me focus. It gives me familiarity. It gives me a sense that I am doing something to control this wild ride, that it is not just controlling me. I’ll set up a links page with the ones that I have found when I get a chance. And as the journey evolves I’ll no doubt review some of them and let you know which work the best for me.

Phew. Apologies for that ramble! And I will say that please remember this blog is my feelings and thoughts. It’s a reflection of how I see things and it may not be factual and it may not be true. I’m not trying to make out its easy for anyone to decide to have a CI – regardless of their history – more try and get across how it was for me – in case that helps anyone else in a similar situation, as I know that’s what I look for in a CI blog.

P.S. I’d be lying if I didn’t admit there is a tiny teeny percent of me that still hopes that I will walk out of the room understanding speech – even if it sounds funny, and that by the time I go back for my first mapping a few days later I will be wowing the world with how much I can hear. That by the time I go back for my one month or three month or six month mapping I’ll be like some sort of bionic superhero that can hear through walls and save the world J