CI Activation, 6 weeks on by Eleanor

Has it really been 6 weeks since I had my CI activated? In someways it feels like yesterday but in others like I've not known anything different. I've decided to write down my experiences since being activated into some handy tips for all of those yet to take the journey, or even those who have taken the journey and like me, aren't always 'happy' with it. This is also for those who surround those taking the journey, because, without you, it would be a much more painful ride. Please don't give up on us, even when we're constantly telling you to be quiet.

 1. Don't expect too much too soon. Yes, I know, pretty obvious one to start with, but it is perhaps the most important thing to remember. When you are first activated, it's pretty quiet and I hate to say it but the world kinda sounds a little ugly. Everything sounds the same, everyone sounds like robots and you can't make sense of anything. Each mapping helps, and honestly, each day helps. Your brain is a pretty clever thing, it soon starts to make sense of it all. It gets better, trust me.

 What not to say: 'Can you hear this?' 'Wow, you must be able to hear everything now' 'Do I sound like a robot when I do this?'. Chances are we can't hear you yet. Sorry. Having the CI activated does not mean you can suddenly understand everything. It would be like saying you could suddenly understand french conversations after being put in a room with two french people, no, just no. It's great that you want to make lots of noises and hope that we can hear it. We probably can hear it but we don't know what it is, nor what direction it is coming from. The amount of times I've said 'what?' because I think someone is talking but its actually an environmental sound, is unbelievable. Our discrimination abilities are pretty poor, our heads are sore and listening is tiring. Instead, be patient.  Please do make noise, it's great for learning, but don't be offended if we don't respond.It's cool to ask questions but please don't think its a instant fix.


 2. It's cool to say I'm struggling. Jumping straight back into work after being activated taught me this. In fact the first evening after activation taught me this. Everything is pretty weird for a while and it's almost like you've gone two steps backwards. Even 6 weeks on and yeah, I'm still struggling. I still have to lipread all the time. But there are moments of clarity, when you hear something new for the first time, when your brain does kick in and hears one random word or phrase that you didn't need to lipread. Just remember to try not to use your annoyed tone with your loved ones too many times, turns out they get pretty annoyed.

 What not to say: Here is a pretty important one, whatever you do, please do not speak for the duration of films/TV. Seriously, you don't need to tell me about the rubbish acting during Walking Dead, it means I can't hear it, I have to turn and lipread you and I'm missing my show. It's all listening practise, so if you care, just... shh. Also, please do not interrupt conversations, we finally get it nailed when its 1:1 talking but any more of you and we don't have the faintest what you just interrupted with. One lovely (slightly robotic) voice is enough, for now at least.


 3. Pretty early on, the realisation that the world is noisy will kick in. Everything makes noise. The carpet shuffles, footsteps, clocks ticking, the birds outside, paper rustling.. even breathing makes noise. To a newly activated CI user, it's loud and very quickly it can get annoying. High speed conversations in the background make talking to one person very difficult. It all clashes and merges and it's so much easier to zone out. You just gotta be honest, and strong. Day 1 of the activation, is day 1 of your hearing. Babies don't suddenly hear overnight and it takes time to learn how to zone sounds out. I'm still learning, its difficult, but try to give yourself some quiet time everyday, that helps.

What not to say: 'You don't need to shout!' 'You're TOO quiet'. Yes, this may be an innocently intended comment, and yes I probably am speaking too quietly, but after having accidentally shouted over the roaring tinnitus (which is apparently all my hearing nerves moving around as they work in a completely new way, piecing together these new sounds and impulses), several times, somewhat embarrassingly, I think I will speak quietly thanks. Not to mention that to me, speaking quietly sounds a somewhat normal level of speaking and any louder just leads to instant fear of being told you're shouting again which is rather off-putting. In other words, make no sound level related comments unless you're at least ten metres away, for your own safety.


 4. Let people in. Talk about how its going. Be honest. Having a Cochlear Implant isn't a cure, it isn't an instant fix, but many people don't know that. Take pleasure in hearing the new sounds, let that enlighten you in the times that you struggle. As for me, I need to learn to take my own advice. One thing for sure, even though it's difficult, I wouldn't change it for the world. I'm learning everyday and if you ask me in a year, I might have a completely new perspective.

 What to say: 'I'm here for you'. And that is all we need to hear. 


 Thank you, for being you.