The Cochlear Implant Journey 2017

It's officially the last day of 2017. What a year it has been.

On the 14th November 2016 I went for surgery for a Cochlear Implant. On the 16th February 2017 I was activated and became a Unilateral Cochlear Implant user. It was a really hard few months I have to be honest and it wasn't until 3 months later that speech actually made sense. Everyone has their own journey to take when undergoing Cochlear Implantation, for some it may be instant (this generally tends to be adults who had hearing beforehand), yet for others take months or even years.

One thing I found that really helped me when I was struggling was NOT to look at social media. NOT to google how long it takes to hear again because you will come across success stories that make you feel stupid. You must remember, everyone is individual, our brains are individual and we do not have remote controls to adjust our understanding of sound. That is what it comes down to at the end of the day, your own interpretation of the sound and how your brain makes sense of that. There is no right or wrong, there is only you, your Cochlear Implant and you.

 It takes a lot of work. It isn't easy. There aren't any shortcuts either (trust me, I looked). But I can tell you 100% that it is worth it.

 In August 2017 I became Bimodal, wearing a hearing aid in the left ear and a speech processor (the external part of the Cochlear Implant) on the right. This was another journey which also required more work. Some have told me it was easy, put it on and go, others have said they hate it and refuse to wear the hearing aid, finding they get by with just one speech processor. I let it all get to me. I wasn't clever enough or fast enough. But does it really matter how fast or slow you are? All that really matters that you reach your final destination. I have to say though, I don't believe there really is a final destination with Cochlear Implants. What exactly are you aiming for? To hear like a hearing person? Then you're looking in the wrong place.  However, if you're looking for a chance to access sound and speech then you're in the right zone.

On the 31st December, I am sat here reflecting on the year of my Cochlear Implant. I went for a run this morning and I ran past a gentleman who kept a steady pace throughout. It took me a few kilometers to realise he was keeping up with me. I wondered how I did not know this, surely I would be able to hear his footsteps or his breathing. I concentrated, listening hard and I could hear something. I couldn't tell you exactly what it was, whether it was his breathing, the paper number cards pinned to his t-shirt rustling in the wind or perhaps it was neither, perhaps it was a bird. The point is that 10 months later I'm still learning more everyday. I don't aspire to be a hearing person, that would be silly but I do aspire to hear things that enhance my life. I went to see the Phantom of the Opera a few weeks ago and I could hear the different parts of the music, I could pick out that someone was singing. The first few seconds of the play I could even tell what the actors were saying without having to read the captions because it was a familiar context and situation.

Predictably is half of listening (maybe more, maybe less, I'm not sure on the specific percentage) but this is still something I get caught up on. I hear, or at least I think I hear the main point, some other parts of the sentence, whack them all together, think of an appropriate response and hey presto I sounded really intelligent there. I've got it wrong. I still get it wrong. But hearing people do just the same. Listening all the time is hard work. Even hearing people get tired (shock horror) and I think sometimes deaf people forget that. I know I do. Perhaps that should be a new years resolution for me, to consider hearing people more.

I will end this blog with my top three reasons of why I do not aspire to be a hearing person and I'm sure some of you will agree with me on some of these points...

1. I get to sleep in complete silence. Those poor hearing people that are kept awake by every little noise or snoring...
2. There would be no funny misheard quotes. My brother asked me what I thought he would be best at: tiddly winks, farming or vegetable throwing. I of course immediately responded with vegetable throwing but it turns out he said vegetable growing..
3. Being hearing would mean I would not have met any of the amazing deaf people that I know. Your abilities continue to astound and amaze me everyday. You are all amazing.


Have a wonderful night tonight, enjoy the last day of 2017 and I hope 2018 brings you everything you want. If you are on the route to a Cochlear Implant then hang in there, it'll be worth it. I hope my journey has helped inspire you or at the very least reassured you that you are not alone.

As for me, I'm on the list for a hearing dog and I've got my fingers and toes crossed that my 2018 will be the year of the dog.

Becoming Bimodal. The CI Journey continues.

What is Bimodal I hear you ask?

 Bimodal is using two different modes. In my case I am now using a Cochlear Implant and a Hearing Aid to hear, two very different bits of equipment. This means I am now 'Bimodal' *Yay*

About a month ago I was invited to get my 'Naida Link' Hearing Aid from the Audiologist, a hearing aid that has been especially designed by Advanced Bionics (the clever makers of my Naida Q90 Cochlear Implant Processor) in collaboration with Phonak (the clever makers of the Natho hearing aids that I was wearing previously). Although this had always been the plan all along, to become bimodal, I was nervous about this next step for various reasons:

 1. After 23 (I was three when I started wearing them) years of wearing ear moulds, I relished not having to wear anything in my ears. I was loving it! With just one CI on my right side which does not need ear moulds, I felt light, as if there was nothing in or on my ears. The sensation of the wind blowing felt strange at first but I found something about it so comforting. I didn't want to give it up so soon.

 2. When I was first activated in February, my brain was overwhelmed and it impacted upon my work and my health. Was this going to be yet another huge hurdle to overcome? I still felt like a newbie at work, always three steps behind everyone else. Was this going to be another step back?

 3. What if I didn't like it? What if it was a huge let down after all the anticipation? What if, having finally gotten used to the sounds of the Cochlear Implant, my brain would give up on all that I had learnt, ignore the new frequencies that I could now hear, the 's' sounds that people always seem to add to their words that never used to be there before, and simply reset to factory settings? The old reliable hearing aid that at least provided me with the low frequencies, just enough to get by with the nod and smile.

All at once it was time for the appointment. In theory, it was a long wait but at that time it felt barely long enough. The appointment was short, just an hour for mapping. I was given a choice of colours but I felt compelled to take the same colour as my processor (sandy beige), even if the silver did take my eye. The hearing aid was programmed based on my Audiogram, a click of a button. I wasn't even sure I'd remember how to put it on after all this time, but I did.

 "How does it sound?" A question I always dread. I never know what to say nor find the right words. It sounded squeaky and surreal. Like voices didn't match the pattern of lips again. I wasn't actually disappointed, I was expecting another adjustment period but it was frustrating that lipreading would be difficult again. The Audiologist really helped though. She put absolutely no pressure on it at all. She said I should take my time with it, maybe wear it an hour a day to build it up and go from there. She even asked if I wanted to take it off for the journey home. I declined, I knew I had a long way to go and I was determined to start right there. The low frequencies from the hearing aid combined with the high frequencies of the processor meant that voices went up and down, like a mix match of sounds, squeaky. My voice sounded much deeper than I expected and very  metallic. It felt like having just been activated again, when voices had lost their natural touch that I'd spent months on identifying. I reminded myself, again and again, it won't always be like this, my brain just needs time.

 And I was right. Although I have to admit the first week after the appointment I had been swamped at work and didn't have much motivation or energy to wear it in the evenings but I did try an hour here and there when I remembered. About two weeks later I wore it for a whole evening and I decided to take the plunge and wore it for the next day at work, and then the next and the next. Within a few days of wearing it all day, it all began to sound natural again but with the added bonus of lower frequency sounds. Men sounded like men and women, although some still squeak, began to sound clearer, as if being Bimodal added clarity. Sounds were no longer always happening on the right side (CI side) of my head, they were sometimes happening on my left (HA side).

The first time I did a Parkrun with Bimodal hearing, two ladies were talking to each other as they ran past my left side and I remember turning to them and thinking, its been a long time since I've heard anyone on that side. Don't get me wrong, I'm still terrible at localisation but now I have a fighting chance. One of the benefits of wearing the Advanced Bionics CI and HA duo is that they are programmed to work together. They have different programmes depending on what functions you'd like, for example, music, focus (good in small groups) and also the option to stream all the sound into one side. I'm still playing around with all of the functions and I've still got lots to learn but isn't technology just amazing?

 I've now been activated for 8 months and Bimodal for 1. I recently went back to the hospital for a check up and to assess how well I am hearing with them. These are my results of the speech test whereby sentences were read out and I had to repeat what I had heard.

In Quiet
Hearing Aid Only          18%
Cochlear Implant Only  94%
CI + HA                         94%

In Noise
CI Only                          44%
CI + HA                         76%

When it is quiet the Hearing Aid doesn't provide much support, yet when it is noisy it really begins kicks in. For example previously when I am in noisy situations e.g. the staff room and I am trying to have conversation with just one person I found it really difficult with just my CI on. Now it feels slightly easier but I still get distracted easily. I now have the hearing aid of an 8 month old so, really it is understandable that I get distracted by shiny things and in particular things that crinkle and scrape (ouch!).

 For those of you who are unsure about getting a Cochlear Implant or becoming Bimodal, I'd just like to say, I understand. I've been there, arguing with myself about it, worrying about all the potential outcomes, but ultimately, it is your decision. Whatever you decide, embrace it.

 I took the journey, I have no regrets and I'm never looking back.

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.

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.