The importance of being open about my experiences

It is 2 weeks ago that I decided to have Cochlear Implant (CI). I am very happy about having been open about my thoughts about my ability to hear and my decision to have CI. I have received many positive messages. One of the things that I really appreciate is that my close friends have read about aspects on my ability to hear that is very hard to explain in the everyday life. The problem is that it is a very huge topic to talk about, so if I should have a conversation about it, then it would have to be a very deep conversation, and that is not something you can do with all the many small-talk conversations you have in most days.

But by writing this blog I experience that it is much easier to start conversations on the topic – how deeply we talk about it will be determined in the given situation. Some of the people that I surround the most express that they wish they had known some the things I have written about earlier. This correspond weel to the fact that I have been frustrated about how difficult it is to bring these subjects on the table. It is strange that I needed to decide to get a surgery in order to become this open about my ability to hear in relation to my circle of friends. So just ask – I would really like to talk about it 🙂

I am participating in a number of groups on Facebook for current and upcomming CI-users. It has been very resourceful to me to talk with other people that is or have been in a situation similar to mine. I spend time om this almost every day, and the discussions focus on many different aspects about getting CI. In a later post I intend to present a range of sources that I have found on the Internet about CI. But for now I would like to mention that people who are reading on this blog because they consider CI should find some of these groups. I can recommend an international CI group called: Cochlear Implant Experiences

Jump from a plane with a parachute you did not pack on your own

As this headline indicate I feel that I am on a journey where I do not know the outcome. One of the biggest challenges at the moment is that I have to say goodbye to sound as I know it – there is no turning back.

In one of my former posts I presented a range of theoretical examples on how the experts believe CI sounds like. Most people think these examples sound awful. But it is important to understand that these sound are wrong for a number of reasons including:

  1. They are theoretical – thos who make the examples don’t know how it actually sound like.
  2. The sound of an implant is electrical – electrical current is sent directly to the hearing nerve and this stimulation is different from a normal hearing
  3. When listening to these examples with a normal hearing the brain is not trained to the different sound – rehabilitation is required in order to hear correctly with CI

When I read about different CI users experiences about the sound of a CI – I hear that after a long training people start to experience the sound as being normal. Therefore I do not feel concerned about the outcome – I am just feeling curious about how good the outcome will be – I know it will never be perfect. But it doesn’t change the fact that it is difficult understand what it will be like to make the jump. It is not everyday you say yes to being deaf for 3-5 weeks and then have to spend months on learning how to hear again.

Many of these thought are in my head every day and it feels tiresome – in some point of view I am in a void where I cannot just move on.

“The fast – the better”..?

A week ago I was at the doctor to get the vaccination that I should have before the surgery – actually it is a little early as I was told that I could wait till the CAT scan was done. But as there are no problems in getting this vaccination before time I decided just to get it done. I want all the things that I have to take care of to be done as soon as possible – I don’t want to be the cause that delay this process 🙂

The vaccination was not a big deal – it was a PneumoVax. I almost didn’t feel the needle and in the following days I only felt like I had catched a mild cold and were a little stiff in my neck – but this could also just be normal tensions in my neck…

The next two steps are that I should have a CAT scan and a balance test. The CAT scan is done so the doctors can se how exactly my ears look and to determine if there are some obstacles that prevent surgery. The balance test is as far as I have understood done to have a reference before and after the surgery – the balance is also located in the ear. The CAT scan and the balance test will be don on December 10 and 12. When the audiology department of the hospital have received the result of these two tests I will receive an appointment for a conversation with the surgeon and the anesthetist – In this relation I will also receive the final date of my surgery. That will be nice 😀

The surgery normally takes 1½ hour on each ear with a break between each surgery. So I would probably be in full narcosis for 4-5 hours (this is the numbers I have seen other users writing). After the surgery I should expect to sleep on the hospital for one night after which I will be allowed to go home – but I am not allowed to very much for the first 2 weeks – so it will be a relaxing (and tough?) period where I hopefully will have enough energy to watch some movies or play some video games 🙂 It is very different how people feel after the surgery – some people feel fine where other people have problems with pains, dizziness, tinnitus and that the food can taste like metal – but most of these issues will fade over time 🙂

There is not much doubt that I want all of this to be done as quickly as possible – also the rehabilitation. I am very much looking forward to the point where I can once again get enough energy to focus on my other interests. But the thing I look most forward to is to be able to hear more in the situationes where I currently find it very difficult to hear today!