CI Activation, 3.5 months on by Eleanor

And breathe. Half-term at last, phew.

It has now been 3 and a half months since I was activated and I've found the more time that passes the less I have to say. Not in a bad way but just in a 'it's going alright' way. People still ask me now how I'm getting on, and honestly I often forget that I'm wearing a processor. My personal feeling is that this processor is better than when I had two hearing aids, even my Audiologist would agree with averages of 70-80% results on word lists without lipreading.

 Music: I actually enjoy a range of music now. Back when I had hearing aids I didn't really get it, I couldn't connect. The only songs I'd really like were sad songs or songs with heavy singing so I could sing along over the din of the background noise. Now, it excites me to pick out the different sounds, to hear the bass creeping up, the piano picking up tempo, the saxophone coming in or the electronic (and sometimes strange) modern sounds added in. I can't pretend I love all music just yet, I've only just started to scratch the surface, there is so much more to explore!

Events: Since being activated I've been to the cinema to see 'Beauty and the Beast'. It was amazing. I didn't know what to expect particularly with it being a musical and having not been activated for long, but I was impressed. I'm realizing now just how hard it is to describe sound, but that's not stopping me having a go! Belle's voice (Emma Watson) got right under my skin. I still hear it in my head sometimes. Now, I don't know if she had a good voice, I've never been the best judge of singers, but it felt so smooth, crystal clear and soothing alongside the instruments.

I went to see a Theatre production a few days ago, called Room, you may have seen it on film recently, a hard-hitting drama that has been inspired by cases of kidnapping (such as the Fritzl case) with 'Ma' who was kidnapped 7 years ago by 'old Nick', impregnated and now has a 5 year old son Jack. The Room is all that Jack has ever known, he thinks that TV is made up and doesn't understand there is a whole world outside. The play has been adapted a little, with some songs added in. Ma often sang, it was really heartfelt and emotional. Sometimes the older version of Jack would sing, an interesting contrast from the smooth, velvet woman's voice to the deeper, harsher tones of a man. I liked them both and when they both sang different words at the same time, well it just made something inside of me swell, like an invisible force of emotional strings twisting and pulling my stomach, my lungs and my heart. Music can be so powerful, so gut-wrenching, so defining that it actually hurts and when it does finish it's almost a relief not to have to feel such a force anymore. It's also stupidly addictive.

 Speech: I still lipread. A lot. But sometimes its more out of habit than necessity. Sometimes I've sat and just listened, seeing what words I can pick out without lipreading and I'm surprised by the results. I mean, I still need serious clues such as context but it's improving everyday. My hearing rehabilitionist talked about auditory memory, even hearing people don't actively listen all of the time, they remember routines, predictable phrases. For example, in a shop, you can guess that questions would be 'do you need a bag' 'do you have a loyalty card' etc. Hearing people don't always listen, they assume/predict and use a handful of prepared responses. When meeting with someone you've not seen for a while, you can guess the questions will be 'how are you' 'what have you been up to' 'we should meet up soon'.

 My understanding of speech is improving all the time and it's impressive how natural it is. The more I expose myself to speech, the more I seem to understand. However, there are situations where I've found not even lipreading can help. If I'm in a room with other people having a different conversation, it bothers me. It bothers me a lot. Even if they are speaking quietly, it's as if they're right next to me talking down my ear. It's distracting and I'm unable to differentiate between the persons voice that I'm trying to listen to from the other voices. I cannot pick out anything related to my conversation, I can't even focus on lipreading, I'm so distracted that I lose sense of the context and my annoyingly natural 'deaf nod' means the conversation carries on without me in it.
 Background noises such as crisp packets being opened and constantly rummaged through (or any kind of packet), keys jingling, printers printing, spoons being stirred feel so loud that my head wants to pop. It makes it so difficult to focus on speech and I'm so distracted.

 So please, if you do happen to see me, be considerate and don't eat, don't fiddle with anything, open doors, print anything or talk to anyone else. Just sit, actually, stand quietly and smile. Thank you.
 

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.

CI Activation, two weeks on.. by Eleanor

It's been two weeks since activation and boy what a journey it has been already.

 I wrote a blog last week with very mixed and confused feelings. When I write blog posts I usually feel better, but when I wrote the last one I didn't get that feeling. I just felt lost in it all, wondering if it ever got better. Having a pretty horrible cold and cough keeping me up all night as well as trying to jump back into the usual work routine, waking up at 5.45am, driving nearly 2 hours to get to work, long days and then driving nearly two hours home again just to eat and drag myself into bed, it just didn't help.

 But now, it's different. I feel different.My cold is pretty much gone, I'm no longer coughing and I wake up in the morning and look forward to putting my processor on. I actually don't like the silence anymore. When I put the processor on, it makes me smile to hear the creaking of floorboards, the clattering of my makeup bits and pieces as I struggle every morning to find the same things I always use. The eyeliner, the concealer, the mascara and mostly importantly the Vaseline (boy, your lips get dry in the winter). The sound of the lids opening and closing whilst in the background the general hum of household noises. I don't know what all the sounds are yet, and some I just make huge assumptions. In the bathroom I often hear a high pitched noise, I assumed it was someone's phone ringing, but perhaps it's a bird. It's amazing just how loud you are in the morning, even when its 5.45am and you're desperately trying not to wake everyone up. One of the loudest things I've found is my own breathing. That early morning sigh when you're staring at the one you love tucked up in bed and eternally you're screaming with jealousy. Why couldn't it be me with the duvet pulled up to my neck dreaming sweet dreams.. surely it would be OK for another hour or two..?

 Two days ago I had my third mapping and rehab sessions. Given that I am an adult it is a lot easier for me to express what I can and cannot hear. For this reason hearing tests can be played WHIILST the Audiologist continues to adjust pitches and frequencies and moves those arrows up and down the screen. My Audiogram now looks like a line across the 40-30, more than a hearing aid could ever give me. Afterwards I met with the Rehabilitation team where we played listening games, typically I wasn't allowed to lipread. Given visual clues and context, I could pick out some of the words they said. It's a good start but that internal nagging feeling of wanting to be independent picked away at me afterwards. How long is this going to take? Realistically? We were talking about things that I was given huge clues to, in the real world, how long until I could eavesdrop a random conversation?

It takes time though, and look how far I've come. Two weeks ago I wondered why I had done this, everyone sounded like robots, everything sounded the same and I felt like I'd taken 10 steps backwards. But now, sounds have settled down, there is no more beeping or robotic sounds, I can hear differences in environmental sounds and I know when people are speaking. I'm at the cusp of a breakthrough, it's coming at me hard and fast now and I'm learning more everyday.

And after a long day of listening, there is nothing better than taking the processor off. Bliss.