It is now time for one of my long posts. In my previous post I presented the rest of my experiences from the first month after the activation. In this post I will write about some of the many main experiences I have had with my Cochlear implants up till now.
This post has like many of my other posts taken quite a while to write. But one thing that makes it difficult to write these posts is that my perception of the progress keeps changing. I was actually 99% done writing this post when I had some experiences that made me revise a few of my considerations and conclusions. It is fun how the ongoing experiences can change my own perception of the different challenges and thereby also how I will explain an experience.
Finally the day of my second mapping session arrived. In the waiting time I had felt that the original original map was far to inaccurate – there were big differences in how sounds were like on the right and left ear and I felt that the low frequency sounds were considerable louder in one of the ears than the other.
The mapping session was performed almost the same way as at the initial mapping session – I had to assess the volume of a range of voices. The result was that I felt that the sound had become more comfortable and that speech sounded much better. We also turned up the volume of the background noises – I clearly felt that there were much more sounds. But it was very tiresome so I therefore had to keep multiple breaks from sound on this day.
In the afternoon I went on a short trip on my bike in a forest and along the beach. At some point I stopped in an area where there were enclosed animals like birds, chickens, peacocks, goats, rabbits and geese. It was an amazing experience to hear so many birds at once and the sounds from all the animals that I don’t hear in my appartment – I was however disappointed that the goats did not want to say anything – I wanted to know how they sounded with the new CI-sounds 😉 Later on this bike trip I also stopped at the beach to sit by the beach for an hour while enjoying the sound of the water that slowly hit the beach. I definitely felt that I had received a much better sound quality 🙂
On the following day I went to a rehab session. We made a test to see how far I had gotten over the first month – the result was impressing. I felt that I was about the point where there were some situations where I was better hearing with my CI’s than with my hearing aids. And I also felt that the latest adjustment would make it possible to make further progress.
I noticed that the extra volume made it possible to notice much more sounds than previously – I had no problems in determining what made the sounds but it was definitely the small sounds that I had almost not heard before that made this period a very exciting journey – I had never thought that all these small sounds could be so loud.
In some occasions I experienced with turning the volume up – it became quite extreme – but nevertheless I felt that it was easier to understand speech when turning the volume up – The reason was that this would give me more sound details and that the difference between each individual sound became easier to discriminate. On the third day I used my second program for a lot of audio book training, and the volume did not sound so extreme after using that program for a while – but I could not stay on that program as it would become too loud in noisy environments.
The wall (day 4-6)
In the weekend after the second adjustment I repeatedly felt that I had hit the wall. In this weekend I visited my parents and siblings. The problem in this situation was that I had just gotten a new map that was considerably louder in volume and that I was not able to turn it further down.
The biggest problem was that I did not have any control over the sound that I was exposed to. If I had been at home I could always prepare for a sound – for instance that it says a loud sound when I put the knife on the table. In that situation I could also stop what I was doing if I needed a 2 second break – I could delay putting the knife on the table.
But in this weekend I did not have the opportunity to control the sounds around me. There were considerably more sounds than I was used to at home and they definitely had a loud volume. I felt that the biggest problem was the big difference in volume between quiet sounds and loud sounds – If I was outside I did not experience this problem very much as that meant a constant background noise that reduced the amount of sudden loud sounds (the sound was just constantly loud)
The result of hitting this “wall” was that I got hypersensitive to sounds, tired and that the sounds started to be choppy like I have described in a former blog post.
When I got home from this weekend the problem quickly resolved. I meantioned it at the next rehab session where my trainer said that we should contact my technician so the volume could be turned down. But I could reply that I had now been able to turn the volume so much up that I believed this would no longer be an issue (in the days after the weekend I got used to much more volume and would therefore be able to turn the volume much more down if it got necessary)
The Eurovision Song Contest as a musical turning point
I have been training the ability to hear music throughout my entire rehabilitation period but it was definitely not perfect yet. This became very clear to me when I watched the first semifinal of the Eurovision Song Contest. I had to realize that it was very difficult to understand all the music I had not heard before and that it was the music itself that was most difficult to comprehend. After the semifinal I therefore decided to train a lot of instrumental music.
When it got time for the second semifinal (2 days later) I felt that it had become much more easy to hear all the songs even though I had not heard them before – I did however think most of the songs were bad 😉 Later that evening I realized that I was able to listen to almost all kinds of music – I was for instance very happy that I could now listen to songs from bands like Guns N’ Roses again – previously it sounded horrific.
I did however frequently experience that in the beginning of a song did not have any clue about what notes were played before getting some seconds into the songs. The reason was that I did not clearly know how the different notes sounded – therefore I always needed to hear some more notes so that I could compare them and then realize what was played.
Visiting the family
In the first weekend of june (3½ weeks after the second adjustment) I visited my parents. During the weekend I experienced that it was very difficult to follow a conversation if more people talking at the same time. On the other hand I experienced that I was able to hear almost everything people said when there was no noise – even when my dad at one point talked so quiet that my mom asked me if I could hear what he was saying – but that was no problem 🙂
But I still experienced that there was situations where I needed to get words or entire sentences repeated 2-4 times in order to understand them. I also talked with a friend on the phone for half an hour – I therefore discovered that in general I was able to communicate on the phone if there was no background noise. It was however still very exhausting to listen in this way.
One thing started to bother me this weekend. Through my entire rehabilitation I had felt that there was some sort of humming noise on some peoples voices that I was not able to explain. It sounds like the speech is correct but at the same time I hear some low frequency noises that should not be there. I have been very much in doubt if I should just train more to get this away or if this could be fixed in the mapping or if this could not be solved at all. This is definitely something that I will discuss at the next mapping session.
Some weeks later I visited my family again and it all started fine. But during the first evening there was a time of absolutely silence where I started to get bothered by and fully focused on my tinnitus. The problem primarily was that it was always very loud and that I was in doubt if I would get rid of it when the volume of my CI was turned up. I was therefore very much in doubt what impact the tinnitus would have in my future. For instance if I had to sit still and work concentrated on a task then the tinnitus could be very difficult to ignore and easily take all of my focus.
The result of these considerations was that I almost could not sleep at night for 2 days simply because my tinnitus became extra loud when thinking about it. I also experienced that my ability to hear dropped a lot as a consequence to the overload of sound inputs that my brain received – there was no periods of silence.
After the first night of almost no sleep I experienced that my tinnitus on the left ear was so loud that all sounds became distorted – I therefore had to used my other ear. On the second day I felt that all sounds became choppy and I had to take a long nap in the afternoon – I also did everything I could to relax.
When the sound was normalized I had to use some days for turning up the volume again as this process had made me turn the volume all the way down.
In the following days I spent a lot of time on reading about tinnitus. In this process it became clear to me that I would probably never get totally rid of it. But I had to trust that it would be able to become more quiet and that my brain has a filter that can filter unnecessary noise. This understanding did have the consequence that over the following weeks I learned to accept my tinnitus and that the volume of the tinnitus was turned down. I therefore try not to think about it. Of course it comes into focus multiple times a day – especially when writing about it here – but I have become good at changing focus away from it even though it can be quite extreme sometimes. As it is now I feel that the volume has been halved but that it can still become quite annoying in silent situations. I cannot solve it by simply turning the volume of my CI up – the tinnitus will just follow the volume of my CI.
At one later I experienced the problem with loud tinnitus on my left ear again – causing all other sounds to be distorted. The problem was however not so big this time as I to a much larger extent had accepted my tinnitus. I was therefore better at ignoring it when I had to sleep and the problem therefore resolved much quicker.
An unexplainable wall
In the following period I repeatedly experienced to get choppy sounds and that some sounds could not be heard when that happened. There was 1-2 weeks between every time I experienced this problem. But most annoyingly I could not find a good explanation as to why this problem kept coming. When it happened I got very tired and I could not really tollerate being exposed to sounds. It was a very frustrating period as it put limitations on what I could do. Luckily in July it almost went away after having that problem for several weeks. But I have experienced it 2 times since. I have however gotten to the conclusion that it is caused by the need to get my CI processors adjusted – but the problem does not occur so often any more as long as I keep the volume down… I do however still feel insecure about this problem as I cannot know if and when it will come again. I just look forward to my next mapping session so that this can be solved.
Waterproof holiday 🙂
As mentioned in some of my previous posts I would received the waterproof Neptune processor that would make it possible to hear on one ear when I am in water. I received this processor in the beginning of the summer holidays. I had looked very much forwards to this as I really enjoy swimming. But the experience does get a little antisocial when I cannot hear.
In this summer holiday I have been swimming multiple times at the beach and one time in a swimming pool. It is however a fantastic feeling to be able to hear in those situations. It makes me feel more safe and it is a lot more fun to go swimming when I can communicate with my friends or family.
But having said that – there is also some difficult things about using the waterproof Neptune processor from Advanced Bionics. When “we” have to go swimming I have to switch to the Neptune processor and that can take a while. I first have to make sure it is using the correct program and then attach it to a bracelet or some diving goggles. When I am done with that my friends might have been in the water for five minutes. Apart from that it can also be difficult to get the headpiece to stay on the head in rough water – especially if the processor sits on a bracelet and uses a long wire. The long wire has a tendency to create a lot of friction against the skin when wet and this friction is enough to rip the headpiece of my head. I therefore prefer to attach the processor to my diving goggles even though it does not look so pretty there – but never mind… I can hear in the water 😀
Soon getting new processors
As mentioned in some previous posts I had to start with some temporary processors until the latest model would be released. The new Naida CI processors has been released and I will receive them on September 11. I cannot wait. The new processor is 40% smaller and therefore also weights much less. It also comes with a range of improvements in relation to the sound processing. I look forward to get these lighter and more beautiful processors on my ears – but I also look very much forwards to getting a new map – I have now had the current map for 3½ month so it is very clear that it is about time to get an adjustment…
But apart from that the current status is that I feel that sounds are becoming normal to me. Most things sounds like I remember them before the surgery just with added clarity. But I can still hear that there are some sounds and especially music that does not sound correct yet – but I am convinced that this will be solved with further adjustments and adaptation.
That is all I have to tell in this post. But don’t worry I have more to tell about. I am working on another post about how CI sounds to me and I also have a range of videos from when I got activated that will be shown on this blog… But it can take a while before I get those post finalized 😉