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.

CI Activation Day! By Eleanor

So, after 13 weeks of waiting it was finally Activation day or 'the big switch on' as others have called it. Well, that was about a week ago but it's only now that I really feel that I can write about it. But I will go through the big day and everything that happened since.

 So, my appointment wasn't until the afternoon which was a bit annoying because it felt even longer to wait. But eventually it was time. My partner and my mum both wanted to come with me so we got in the car for the 2 hour drive and got there just in the nick of time.

 It was a bit surreal, sitting in the waiting room and trying to hear things with just the hearing aid in the non-implanted ear. It was hard not to think 'that's the last time that will sound like that..' when I really didn't know what to expect. Yes, I've seen the videos on YouTube of people crying at activation, babies smiling and even marriage proposals, which by the way, I now believe is THE MOST inappropriate time to propose. Finally getting switched on, to be utterly confused by the robotic beeping sounds that don't seem to match people's lips movement and you're giving a long speech about how much you love them and you wanted their first words that they hear to be 'please marry me'. No. Just no. Because I can guarantee, they can't hear you. It's a shock to the system. And people are just talking at you. All the time. And you just don't know why, but they just don't stop. The world is so noisy. So that's the negative bit out of the way.

 The first part of the appointment was setting the magnet strength so that the processor would stay on my head, before it was put on and hooked up to the computer. The Audiologist (very nice man by the way) asked me to let him know when I could hear beeping. It took me a long time to hear it, but it got easier but they all sounded the same. Beeping, again, and again and again. Eventually, he spoke. And things got weird. There was sound, but it wasn't matching his lip movement. I didn't know which to focus on, his lips or the sounds but the sounds were distorting, tinny, robotic. He asked me what it sounded like and I could only respond with 'weird'. Because it was weird, really weird. Eventually I said it sounds robotic, to which he told me is very normal and that others have said it sounds like Mickey Mouse. I zoned out, realising I've never really heard Mickey Mouse, but that's not what I'd imagine him to sound like. Although some parts of his speech were really loud and felt like a kick in the head, I wasn't hearing everything. I couldn't hear my mum or my partner sat further away, just random scatty tones. Is this it? I thought.

 Then we were sent back to the waiting room for the next appointment. I said to my mum and partner that I didn't know what Mickey Mouse sounded like. My mum laughed and said she didn't think I did. I asked my partner to put on a Mickey Mouse voice, "I talk like this" he said with a smirk. "Are you doing the voice yet?" I asked, he still sounded the same to me.

The next appointment was with the Speech and Language Therapist for 'equipment briefing'. She did tell me her name but I don't think I really heard it. She was nice. She gave me a huge box (for such a little processor) with bits and pieces i.e. batteries, drier, battery charger. I now needed to find two more plug sockets in the bedroom. She asked me how I cared for my Hearing Aids when I wore them.. awkward silence. I made a promise to myself that I would definitely look after the processor. I don't really remember much else about the meeting. Just lots of talking, so much talking. I didn't hear it all, I didn't understand it all and it was nice to have others there to fill in the gaps later.. much later. It got a bit too much. Speech just sounded like beeping and it was like being in a room full of robots all beeping at each other.

 Then it was time for long drive home. It was late when we got home and I was pretty tired so I went to bed soon after. The next day I had another appointment at the hospital so I got the train in the morning. I didn't really have all that much time to use the processor so I found it difficult to answer the Audiologist when he asked me if there were any sounds I was finding particularly loud. I felt like I should already be doing better, so when I saw the Hearing Rehabilitation lady afterwards she made me feel better by telling me this was day 1. Day 1 of hearing. She played listening game with a list of names I knew, saying them whilst I was turned away. It was a lot of guessing I'll admit, everything sounded the same. Banging, knocking, speech, man, woman it all sounded the same. I knew it wasn't going to be easy, they'd told me that throughout the assessments, but at the same time I didn't expect it to be quite so difficult.

 On the train home I began thinking of the babies who had been activated in the videos. I tried to think about how many of them had been smiling, if any had been crying. I remembered a few where the babies eyes would widen, curious at the new sounds they could hear. I imagined my response being similar, but also confusion. Yes, they can hear something, like I could hear something, but didn't make any sense, not even to me, a consistent Hearing Aid wearer from a young age. I realised in the moment, I would have to learn everything again, just like a baby. That is why it is so important that as Teachers of the Deaf, we take the time to teach that to families, to teachers and anyone else involved. A Cochlear Implant does not magically fix them. It takes time to learn, to develop. Day 1 of the activation, is day 1 of their hearing experience.

 As for me, well I'm on day 7 now and I am trying to keep my processor on as much as possible. I have had a stinking cold and cough which hasn't helped and initially made me so much more sensitive to the high pitched beeping and squeals. At times it's been overwhelming and I still don't understand speech. I'm getting there though, I'm better at discriminating between environmental sounds and speech, bar one or two mistakes.. you'd be amazed what sounds are similar to speech.

 It will get better. I do think it's about time you all stopped mucking about with your robot voices though.

Post op checks.. continuing the CI journey.. by Eleanor

No need to worry, I am still here!

 I thought I'd better write a lovely blog post to update you all on my Cochlear Implant journey.
It is now exactly 3 weeks since my operation and I'm feeling great. Nothing hurts anymore, nothing aches, nothing throbs or groans or tries to remind me of the fact I have a implant in my head.

However, I am constantly reminded of how deaf I am. I know, I was deaf before the operation, and I'm still deaf now and I will always be deaf. But, having just one hearing aid has hit me rather hard. It's gotten to the point where I don't even notice people chatting away on my right side (the implanted side) until I look round. I'm zoning out all the time because I'm too tired to focus, and I'd much rather be at home in the land of silence and not having to listen to anyone. My world is an oral world, which was why I wanted to take this journey, to be able to access it a little more easily. This isn't forever, I know that, but it doesn't make it any easier in the now. I'm waiting rather impatiently for the switch on date and once I have that, I'll know there's an end to this stage and the start of a new and exciting one.

 Last week I went back to the hospital for a post op check, where I was asked to go to X-ray for a head scan to check the implant was in the right place. I also saw the nurse who checked inside my ear and the wound. Everything is healing so well and I'm amazed by how easy it has all been. It really is just waiting now.

 A few weeks ago there was a programme on Channel 4 called 'Breaking the Silence' which showed 7 people getting their CIs switched on for the first time. It was all filmed live, a brave decision by channel 4. I'm not really sure why they felt they had to show it live, nor why they had to show 7 people getting switched on. Don't get me wrong, it was very interesting and I enjoyed it (apart from the dodgy subtitles...) but couldn't help wishing it had been more of a documentary, showing the journey of CI, from assessments, to switch on, through to a few years later. Hearing is such a difficult thing to explain. I don't know what it is like to be hearing so I couldn't ever be accurate in telling you, but for people who are hearing, that's all they've ever known. How can you explain something that comes so naturally? It's like when you think too much about the way you breathe and suddenly it becomes very overwhelming and you think you've forgotten how to do it.

For anyone interested in Cochlear Implants, Breaking the Silence is a great place to start, but there is oh so much more I could tell you. And pretty soon, I hope there's even more I can tell you, in between listening to your impressions of Donald Duck...