Sunday, 27 July 2008

My first panic about everything

27th July 2008: I had to fill out a health questionnaire sent to me by Nuffield Hospital (I’m having my operation there) and this opened the floodgates of fear and worry. I am absolutely terrified (this isn’t a good enough word for what I feel) of the operation and what is going to happen afterwards. I’m dreading going into hospital as I’ve never had an operation before and I’m dreading being put to sleep and letting Mr Gray loose on my head to shave some hair off and go close to my facial nerves during the operation! I wish my boyfriend was around to help allay my fears but he’s on holiday until the 11th August. My own family are going away tomorrow so I’m going to be left alone with my fears until Anthony comes back. I don’t want to talk to my friends because I know that it’s not going to help. I just want to be held until it’s time to go in and have it done. What has helped me today is researching people who have had it done, it all seems to be so positive. I know that I will be ok and I will come out the other side. What I’m scared of is a fear of the unknown because I’ve no idea what I’ll be able to hear after the switch on. I’m scared of everything sounding different and not liking it and wanting to go back to hearing aids. The problem is, I won’t be able to do this in the ear that I’ll have been implanted in! I also know it’s going to be a lot of hard work, learning to listen again and make sense of sounds. So I’ve just got to keep reminding myself that it’ll be ok, I’ll hopefully be able to hear better and I won’t regret it when all the hard work’s over. One side of me keeps saying “Why are you doing this? You’re saying goodbye to everything you’ve ever known for 18 years.” Because, even though I know I miss out on the higher frequencies of sounds and quite a lot of other things, I still think I’m a hearing persona and nothing needs to be changed. But then, having one way conversations on the phone with my boyfriend does not make me happy. The prospect of possibly hearing his voice a bit clearer does. The prospect of hearing my friends talk to me without straining my eyes and my neck all the time does. Hearing myself say the letter ‘s’ does. I can only feel myself saying it and having to repeat my own name which begins with the letter ‘s’ to strangers is getting very annoying. My policy from now until 21st August (my operation date) is not to think about it and try to look forward to it. :D

Final appointment at Emmeline Centre

10th July 2008: I had my final appointment today to fill out a questionnaire based on my current hearing levels and what I expect from having a cochlear implant. Then they did another baseline test of my hearing using the “screen test”. This is a man on a tv screen with a blue background and he says sentences which you have to lip-read and repeat back to the audiologist/ speech therapist what you heard/lip-read. They do this test with no sound and lip-reading, then with one ear listening and lip-reading, then the other ear, then both and finally I did some listening of sentences coming out of speakers. They found that my lip-reading is excellent and that I did even better when I had sound to back up what I was seeing. They also said I am making excellent use of my language and visual skills to help put together all the pieces of the jigsaw puzzle that is sound. My right ear tended to be better at listening independently than my left but both ears together was better than one. I was able to pick up single words, perhaps two in a sentence. I was usually able to tell the intonation of a word or sentence but would not have enough information from listening alone to know what a sentence contained.

Deciding which bionic ear I wanted

4th July 2008: I had another appointment at the Emmeline Centre to choose which device I would like to have implanted. I had already decided that I liked Advanced Bionics because colleagues had influenced me. The fact that you can change the colour of the BTE and headcap was also a little bit of an influence! The appointment started with someone explaining to me (again! Because I still haven’t learn it..) how a cochlear implant works and then she pushed the three different devices in front of me and attempted to explain the different features that they have. I tried them all on and found that Med-el didn’t sit on my ear very well and I didn’t like the fact that it has a remote control to operate it. What if I temporarily mislaid the remote control (I hardly ever lose things) and couldn’t change the settings or even turn it on?! So I took this one off my list and tried the Cochlear Nucleus one on next. My mother has this brand (has done for 9 years and likes it, is very happy with it) so I wanted to consider it. However, I found it too bulky at the bottom of the BTE, it’s narrow at the top and gets wider as it gets longer so I took this one off the list too! This obviously left me with Advanced Bionics Harmony High Res 120. I tried this one on and it felt very comfortable even if the microphone coming down the front of the ear felt a bit odd. It was also very odd to picture myself with the headcap/magnet at the back of my head. This was the realisation moment for me… I thought “this is what it’s going to look like” and strangely it wasn’t too much of a shock and I felt, for the first time, a little bit of excitement since this whole process began! My only dilemma now was what colour I should have the BTE in. It comes in beige (which is darker than a hearing aid beige, more a light brown), black and silver. I wanted the beige as this is the colour I’ve always had in my hearing aids and it would better match my hair colour. My boyfriend wanted me to have black as he said “I should be proud of it, show it off and black is cooler than BEIGE!”. After much dithering and changing my mind over the next week or so I finally settled on silver. This colour combines everything my boyfriend says but isn’t as obvious as the black or as ugly as the beige. I’ve chosen accent caps that are patterned and can have a rainbow headcap if I want! (I love rainbows, me.)

The day I told everyone I work with

2nd July 2008: Today was the Family Support Group at Mayfield where I was working as a Deaf Support Worker which is my full time job. Only the day after I told everyone that I’d decided to have the implant and the general consensus was of approval and excitement. A few who know me better than others were worried that I was rushing into it and so were anxious for me. It felt good to tell everyone that I was going to have it, as if by telling everyone I was preventing myself from backing out of the whole thing. However, there were a few children at the group today who have implants, some bilateral and that is the inspiring thing for me - the kick up the bottom to have it done! I think it’s amazing when I see one child I work with who has a unilateral implant making noises which is not much more than a screaming garbled mess but that child can hear themselves and that is leading them to make noise. It’s also amazing to see them listen to a sound and then attempt to replicate it with a good degree of success! I can’t wait to watch them grow up and start speaking and hear sounds. The main reason I have decided to have this implant is because I have a progressive hearing loss (which has been stable for about 10 years) and I have noticed I can’t hear old songs as well as I used to be able to. I can see how well children are doing with implants and would like some of that hearing for myself. By deciding to have an implant I can continue to attempt to keep up the pretence that I’m a hearing person!

The day I signed my life away

1st July 2008: I was offered a cochlear implant today! I wasn’t expecting the surgeon Mr Axon to be so direct and so I was totally blown away when I heard “we’d like to offer you a cochlear implant” and he sat there with an expectant look on his face. I couldn’t answer him there and then so I asked him for some thinking time, meaning a day or so. He clearly wasn’t expecting this but accepted it. I left the consultation room and sat in the corridor with my boyfriend. We talked together and also talked to a member of the Emmeline team and after a few tears I finally decided to do it and said yes to the staff member. I felt sick and anxious for the rest of the day and my boyfriend was a huge strength in keeping me up and relaxed about it all. I just have to not think about it and it’s absolutely fine.