I recently participated in an extended weekend camp for young people with hearing disabilities. I have participated in these camps 3 times, and after each visit at this camp I have started to focus a lot on my own ability to hear.
On these camps there are great possibilities to talk about the issues that each of us experience regarding our hearing loss. These conversations are further complemented by a range of talks which have very different content from year to year, but which often help us in focusing on what consequences our hearing loss have both in everyday situations but also it affects us psychologically.
It was primarily at the camp from last year (2011) that I started to notice and consider my problems. In one of the talks they presented how the ear functions and the different kinds of hearing loss. At this point I really started to understand that my primary issue was not the amount of decibels that I have lost – my primary problem was the loss of discrimination between small nuances in speech. In the below image you may see my last hearing test – the figure does however not show my loss of speech discrimination which is around 80 %.
In short a loss of speech discrimination means that one have lost the ability to discriminate between small changes in frequencies. This often means that one will have a hard time in determining what consonants people pronounce in the many words used in a sentence. In my case I experience that it is hard to hear consonants and to determine if a heard consonant was a d, b, g, t, p and many other consonants. In the everyday situations this means that if I don’t have a possibility to use lipreading then it is very hard for me to hear what words people are saying. In many situations I am able to guess based on the context if a said word was “boat” or “both”. But this require extra concentration and energy and I therefore experience that I usually get very tired.
In the danish article called “Skelnetabets betydning for kommunikation” (what loss of speech discrimination means for communication) they present a thorough description of speech discrimination. The thing that I find very interesting in that article is that a big loss of speech discrimination for most people have the consequence that they sort of disconnect from conversations when multiple people are talking. The main reason of course is that it requires a lot energy to concentrate on the contents of a conversation in noise when you have a loss in speech discrimination. It simply means that one needs to take breaks, and the easy solution in these situations are often to just stop listening. Apart from that a loss in speech discrimination also have the consequence that one looses the trust on the ability to hear. When you loose this trust you might get an restraint attitude in any conversations simply because you are in doubt if what you want to say really is relevant in the current conversation. Maybe you just repeat something another person said, or you answer on another question than the one that was asked. I know this problem too well. I have experienced all of the consequences that is mentioned in the article.
For me this problem means that I feel disconnected in many situations and that it require a lot from me to communicate with new people and also to take the initiative to meet new people. In some way you could describe this problem as a downward spiral because my hearing loss and loss of speech discrimination become an obstacle for establishing and maintaining contact with other people
As already mentioned it is the camps for young people with hearing loss that have really given me the push to focus on my problem with hearing and finding solutions for my problems. I have really started to pay attention towards what details are missing in my ability to hear. But I have also started to have the focus that I should find solutions for it. This for instance means that I should use the assistive technologies I have but also consider if I need to get other solutions.
In the last two weeks I have started to pay a lot of my interest towards Cochlear Implants (CI) which is a solution that needs to be surgically implanted in the ear. On the camps for young people with hearing loss there are a range of the participants that have CI. It is based on their stories and experiences that I have gotten interested in CI. The thing that really interest me about CI is the speech discrimination that many CI users experience to have. I have read many stories on the net about people who have become able to hear audiobooks on foreign languages and people that have even gotten a better speech discrimination than their normal hearing friends. It sounds like a dreamworld scenario to me.
There without doubt a lot of things to consider before letting the doctors cutting your head under full narcosis. First of all it needs to be determined whether or not it will be an advantage for me to receive CI. It also needs to be determined if my body is able to receive the surgery. But apart from all of this I also need to think about all of this on a personal level. If I get CI it will be much more visible than my hearing aid and you could almost think you would look much more handicapped with a CI than you do with hearing aids. But I have started to think to myself that I really have to consider what is the largest handicap: to be bad at hearing or to have a visual handicap which is only noticed by other people. I have decided that i prefer to be able hear what people says.
It is therefore my decision that I want the experts to clarify whether or not I would benefit from receiving a CI.