Three months ago I had my two Cochlear Implant (CI) processors hooked up. It has been a very exciting time and I have definitly been looking forwards to describing it. I am sure that this is a time in my life that I will be thinking about in many years to come. I have been able to hear more and more in this period – and in the beginning I felt I could sense the difference on a day to day basis. This has made me happy even though I still have a long journey with new challenges ahead.
It has also been a difficult process to relate to. There are so many aspects to take into account and when I look at the individual observations I have felt a need to do more reflections in order to find out how to describe them but also in order to figure out how the development of one observation would change over time. I have also felt that it is almost impossible to explain how I think CI sounds in a way that would make sense to someone who haven’t been through this process. It has not been possible for me to start out with happy stories about my progress in the beginning and that has also made it difficult for me to determine what my own opinion was on this process and thereby what I should write on this blog.
One of the things that I have found most difficult to relate to is the patience that is needed towards ones own rehabilitation. Just getting to the point where I could perform similar to what I did with my hearing aids took quite a while. It is difficult not to think that now everything will be fine with the new sound and expect a quick result. Even though I have already read a lot about the rehabilitation process I have been surprised about how big a task it is to learn how to hear in a totally different way. In the beginning I felt that all sounds were sounded strange and that it would be a long and cumbersome way to the goal of being able to hear better than I did with my hearing aids. The challenge is not to hear the sounds – the challenge is to distinguish and understand them. It is for instance quite difficult to see how the goal can be reached when the church bells sounds like the neighbor is hammering nails into their walls or when music sounds like a lot scratchy sounds were it is only possible to hear the rhythm.
The many aspects towards hearing in a new way is without any doubt the thing that has been most difficult to describe. At the same time I have also found it difficult to find the time and energy needed to write a blog post based on the many notes I have written.
It is a long period that I need to present and I have therefore chosen to divide all these experiences and reflections into a number of posts. In the first posts I will present my experiences from the first period, and in a later post I will try to present my reflections on the process and to describe the sound that I experience with my CI devices. I have already prepared the first posts, and they will be released over the coming weeks as I get them finalized 😉
Once again I would like to emphasize that all users have different experiences about what and how they can hear – In these posts I only present my own experiences and reflections.
In my previous post I briefly mentioned that it was very difficult to fall asleep – I only slept 2-3 hours and I had to get up at 6.30 in the morning in order to go to my first rehabilitation session. The thing that kept me awake naturally was that I had finally started to hear again – and I really looked forward to get up and put the sound on again.
The trip to the rehabilitation session went fine, and I actually noticed that the sound of the train and the cars sounded more correct than they did on the day before. When the train was stationary I could for instance hear the engine noise, and when it arrived I could hear the bumping sound that comes when the wheels pass over the rails assembly points. But it still sounded strange and it was without any doubt a very noisy experience.
I felt that it was very nice finally to get a sense of what happened around me after having been deaf for a little more than a month. But I could not hear from where a sound came, so I always had to guess the direction. It is worth mentioning that at this point of time the settings of my processors was not correctly ballanced, which meant that I could not judge the direction of a sound based on the difference in volume on each ear.
But on this trip I had a nice experience – there was a man who asked if the trained stopped at the hospital – I heard him correctly but I did not feel certain, so I asked him to ask another one as I did not want to risk providing him with wrong directions.
The first rehabilitation session
I started the rehabilitation session by telling the audiologist about my experiences since I got my processors on the day before. I received positive response on my approach – it was good that I have tried listening to a childrens audiobook on my phone, a danish movie and my phone. The audiologist found it surprising that I had managed to understand some of the speech when calling my voice mail.
We shortly talked about my experience on the train where a man asked med about where the train stopped – it was certainly a positive experience. But as the audiologist said it is also important to trust what I hear – so maybe we would have to focus on this later in my rehabilitation – I did however believe that this was an issue that I would be able to fix on my own.
In relation to training on the phone I mentioned that I would have to find something more interesting to train with apart from the voice mail. The audiologist therefore provided me with a list of advice on how I could train my ability to hear. The list contained a lot of obvious advice like listening to an audio book but it also contain suggestions like calling “ms. clock” (a phonenumber you can call to get told what the current time is), or calling a phone number where a machine reads aloud the latest news. I was also provided with an audio book so that I could train my ability to hear and understand speech. It was not the most easy audio book that I could get, so I would have to judge on my own if it was possible for me to train with that book.
We then made a ling-test to see if I could hear the main voices: “aaa”, “uuu”, “iii”, “sss”, “ssh” and “mmm”. This test went fine – we initially testest while I was listening on both ears, and afterwards we tested where I listened on one ear at a time. The biggest problem for me was to hear “mmm” it almost sounded like “uuu” to me. But during the test I managed to get a little better hold of the “mmm”-sound.
The audiologist then suggested that I started to write notes on my experiences of what I could hear every day. This would be a good way to track my experiences and a good way for me to keep track of how I experienced sound at earlier stages in my progress. I told the audiologist that I already did this by writing notes and then rewrite my notes into posts on this blog.
We then talked about music which is always a big challenge even though it is a very way to train. I was suggested to hear music while reading the lyrics – this is also a good way to train the ability to hear speech in noise. We hear a popular danish song called “Det er mig der står herude og banker på”. It was a very strange experience. I initially found it very difficult to follow the lyrics and I felt that the only thing I could sense was the rhythm of the music. But towards the end of the song I noticed that it was also possible to sense some of the speech – but almost all parts of the music was still gone. I could not avoid thinking that it would be a very big challenge train with music – but I also felt that this was something I would definitely train a lot – I could not accept being this bad at hearing and understanding music…
After this first rehabilitation session I had to wait for train for a long time (I was late for the previous train). But it was a very wonderful experience to wait for the train. It made it possible to reflect on my process, but it also made it possible to train some background noises. There was sounds of cars from a nearby road, but I also felt fascinated by how it sounded when I walked in some gravel – the sound had become very loud and clear.
More training at home
As I got home I felt that I have gotten the push that made me want to find out what I could hear but also in order to train as much as possible. I started by watching some part of a documentary in the TV – I could get along but I had to rely on the captions. I the tried to listen to some music – it sounded a little better and it was easier to follow the lyrics – but I guess I added more volume than what we did at the rehabilitation session. But I still felt that it was a strange experience – it sounded very strange.
As I had not slept a lot through the night I decided to take an afternoon nap. Afterwards I decided to figure how much I was actually able to hear with my phone. I therefore called my my voice mail and the news reading machine (you can call a phone number where a machine will read aloud the latests news). I was able to understand what was said in the menus – but with the news I had to surrender – it was apparently a machine that read the text aloud in a way that I could not understand.
I then texted my mom and suggested that she could sit at her computer with Facebook Chat while we tried a phone conversation. We talked for half an hour on the phone – it was a great but very tough experience. My mom had to talk very slowly and clearly – there were many words or entire sentences that she had to write on the chat instead. But it was a cool experience to be able to have this conversation as it made it possible for me to describe my experiences in a totally different way compared to the alternative of writing them in an e-mail. But there was without any doubt a long journey of training before I would be able to hold a normal conversation. In the end of our conversation I also felt very restless because it was so hard to follow along with the conversation.
After a break I decided to train with the audio book I had received at the rehabilitation session. It was an old danish classic novel called “Hosekræmmeren” by “Steen Steensen Blicher”. I read/heard the first chapter – it went fine but in the start I felt very confused as I could not match the audio with the book. After a long time search I figured that the first part of the audio book was a resume of the book that was written on the back of the physical book. This certainly showed that I had to read the text in order to understand the audio.
While listening to this first part of this audio book I also considered if the audio book was narrated by a man or a woman. I was in doubt but ended up guessing that it had to be a male voice. It turned out that this guess was wrong – except if “she” had changed her name during a gender reassignment surgery 😉
It was then time to prepare my dinner – this was an opportunity to hear some kitchen noises. It was pretty noisy to hear the water boiler, hood and the dish washing. The only thing that really made me feel astonished was the noise I heard when the water was boiling with the spaghetti. I could hear the voice of the air bubbles that burst when they reached the surface of the water. I have heard that sound before, but it had become more loud and much more detailed.
In the evening I watched some episodes from some english tv-shows that I usually watch. It was nice to get sound on these again but the voices did not at all sound like how they used to. All the actors had gotten a lot of helium and a vibrato voice. At some point during this evening I heard a song on my laptop that I knew pretty well before I received my Cochlear Implants. The female singer had gotten a very crazy helium voice that had become very clear even though she could not hit the notes – I could not avoid laughing loud – I had to hear it multiple times 🙂
It had been great to train a lot on the previous day, and I still wanted to train as much as possible as I clearly felt that there was a long way to the goal. I did however also feel that the voices became more and more clear for every day that went – I actually felt some sounds started to sound like how they did before I received my Cochlear Implants.
I started the day by watching some part of a documentary in the TV and then I listened to some music. I felt that it had become more easy to follow along when listening to music but the instruments was without any doubt the most difficult thing. If there were many simultaneous sounds I felt that they became muffled which made it impossible to follow along. The voices was also very difficult compare to how I remember them before CI – all of them had received helium. In addition I also experienced that some songs had displaced the notes such that it sounded like all songs had their notes displaced into one or another direction. It sounded very strange and it was very difficult to ignore this displacement of the notes – but at least there was some songs where I experienced that the melody was fitting – but just played in a different octave.
In the afternoon I had to go shopping. The trip to the shop went fine – it was noisy but not too much. During this trip I especially noticed the sound of the raindrops that hit my hood – I have heard the sound before, but it sounded much more clear than how I remembered it with my hearing aids.
In the shop I was met with a lot of sound impressions. The first thing I noticed was that the small carts with wheels was quite noisy. In the electronics department I wanted to look for some good movies to use for my audio rehabilitation – but it was impossible for to think about that as the noise from their TVs in that department was very sharp. This problem appeared to be almost nothing compared to the sound impressions that I received when I got to the refrigerators. I had to realized that I was extremely overwhelmed – the result was that I frequently had to pause, and felt that I could not think at all because of the very loud noise.
At some point I realized that the sound of the refrigerators and all the other sounds in the shop was too much. I therefore had to the checkout and pay so that I could get out of the shop. It was a relief to get out – as long as it lasted – when I got out to the roads I felt that the sounds were too loud again.
When I got home I had to pause at the entrance and be absolutely quiet for a few seconds before taking of my jacket. After putting the groceries into the refrigerator I decided to take a sound break – I had without any doubt been overstimulated by sounds because of this shopping trip and the many excercises that I did earlier. My tinnitus was very loud when I took off my processors – it also varied a lot in intensity.
I have been told that it can be good to take a half hour break from sounds to avoid getting overstimulated, but it is also important that I try to experience as much sound as possible. This is the reason why I was stubborn and kept my processors on for the whole shopping trip – I also have to learn to hear the loud sounds that I will always meet on such a trip. This is why I felt it was best to take my break at home where there would not be so many sounds to focus on.
In the evening I heard music for 3 hours while I wrote the previous post on this blog. It was nice to hear music and even though it sounded very strange it felt very relaxing.
During this day I was frequently on my second program – but it was primarily when I was watching TV, training audio book or music. I experienced that some sounds were more understandable on this program – but on this program the voice was very loud. I therefore tried to avoid making sounds on my own – if sounds were too close to my ears I would blink with my eyes because of the loud volume.
On day four I clearly felt that I had hit the wall. When I woke up I had very loud tinnitus – while I took my shower I looked very much forwards to take my CI-processors on again. Hopefully this would reduce my tinnitus. It helped to get sound but my tinnitus was still there. I felt that the tinnitus came in waves and that it was frequently at the maximum volume. I was not in doubt that this was caused by my very intensive training during the previous days.
I had to start the day by going to my second rehabilitation session. I started by telling about all the things I had trained with. I was told that I had been training to the extreme and I had to admit that I had trained to much since I now had this loud tinnitus. We then talked about that my problem was that I could not really feel when I should take breaks with my training – I can only feel it when I have trained too much and then it will hit me very hard. I therefore had to find a balance so that I would not hit the wall all the time.
At the previous rehabilitation I received an audio book. I was finished with it but was told that I should take it home again, and then train by taking one page where I listen and read and then replay that page without reading. I also received a large book + audio book. This book was difficult but that did not really concern me – I was just happy to receive a long book that would not be finished so soon.
We then performed a test where my audiologist would read pieces of a text that I should repeat. This test was done with lip-reading and it actually went fine. I had very few errors – but I already felt that I understood almost all my audiologist said as long as I could lip read. We then talked about doing the same test without lip reading – I liked that idea but mentioned that my loud tinnitus could make it a big challenge so we decided to wait with that test.
On my way home from the rehabilitation session I walked along a small river into the center of the city where I had to catch a train. It was a nice trip on foot despite of the grey whether. I frequently noticed different sounds from the many birds that was along this river. But when I had to walk along roads with traffic I decided to turn off my processors until I was home.
I decided that I did not want do more exercises on this day so that I could get more relaxed again. But I did watch some TV with sound and I also wore my processors for the most of the evening but without focusing on listening.
In the end of the day I felt sore on the top of my ears. I started to look very much forwards to when I will receive the new Naida CI processors from Advanced Bionics – they are smaller and therefore weighs much less.
Slowing down (day 5-8)
There is no doubt that I had trained too intensively for the first days and I really wanted to avoid doing that again. I therefore decided to slow down in the following days. I did that by spending a lot time on this blog. In these days I finalized my previous post and launched the english version of the blog (it is possible to change language in the menu in top of the page). But I also managed to train a little during these days and I clearly felt that my tinnitus has reduced compared to day 4.
On day five I trained to listen on my easy audio book without reading – there was certainly a long way to go but I felt that I could understand some short parts without reading. I also heard a little more music and I definitely felt that it started to sound more correctly. I was also in another shop without feeling that it got too much. On this shopping trip I particularly noticed that I could hear many birds while walking in the backyard.
On day six I took to a park where there was a lot of bird voices. It was very overwhelming to hear so many birds tweeting – even on the trip to the park along a very congested road I noticed that I could hear some birds through the noise from the traffic. I have always been able to hear birds if there was not too much noise – but I have never been able to hear so many birds at once. At this trip I also went past the beach to hear the sound of the water – but this sound was so loud that I did not want to stay there for very long. I also notice some birds in my appartment even though the windows was closed – I had never experienced that with my hearing aids.
In the end of day six I listened to and read a few chapters in the difficult book that I received at my last rehabilitation session. It was some boring chapters! It was narrated by a man with a very deep and monotonous voice and that made me realize what makes it so difficult to understand some sounds with Cochlear Implant in the beginning:
If you imagine one point of the cochlear that usually would hear a 2000hz sound – if this point suddenly has to hear a 1000hz sound then it might be experienced like hearing a 2000hz beeping sound. The brain therefore has to learn that this beeping sound is actually another sound… When I received my CI processors I almost only experienced very high frequency beeps – but during the first week I felt that some sound started to sound correctly.
To be continued…
That was all I had to tell about my first days with the new sound. In the post I will tell about my experiences from the rest of the first month with Cochlear Implant sounds.