Monday, 25 October 2010

Sunday 24th October 2010 - Evening Church Service

Today, I stayed at home most of the day and only went out to go to church at my Methodist Church where I am a member of, in the city centre. My experience with following church services at my church with my CI has improved more recently although I still need some support. They have had some deaf awareness training.

Deaf awareness training truely makes a MASSIVE difference!

The Minister, my friends and some of the stewards at the church are brilliant in meeting my needs. They are extremely deaf aware and integrate me into church's life. At church, I use my FM system as that gives me more power of sound than the loop system. My Minister is excellent with wearing the transmitter, and he is aware that I still have limitations with following, that he gives me his notes which are a great help. Another great help is that my friends also help with writing down whats being said of the bits I cannot follow. I have also noticed that more and more stuff in the church service are on powerpoint, that helps alot too. I have problem joining in with the hymns, so I sign them in British Sign Language. Everyone's used to that now :-) and they help me follow the hymns. Also, when we have Communion and we are kneeling at the altar, when our Minister says the prayer before we return to our seats, I look up to lip-read him and hes very good at making sure that I can see to lip-read him.

Deaf awareness really does make a difference.

Saturday 23rd October 2010 - Cambridge and BSL CIusers

Had a wonderful day today in Cambridge where I met two Deaf friends who also have Cochlear Implant (CI). Like me, they were both born profoundly deaf and brought up with British Sign Language (BSL) and in the Deaf World. They too, like me, objected to CI in the past as we saw them as a threat to the Deaf Community and our Deaf identities. Having seen more members of the Deaf Community who use BSL and have strong Deaf identities like me getting Cochlear Implants, our views are changing. We realised that with being cochlear implanted as adults, we don't change and there is no threat to BSL. We are still Deaf and although we can now hear environmental sounds and music, we still cannot follow speech except lip-reading 1 to 1 with a very Deaf aware hearing person. Due to the lack of our auditory experience growing up and being too deaf at the time our brains develop these auditory pathways for the comprehension of speech, despite the said benefits with environmental sounds and music, we still have alot more limitations with speech comprehension than those who were implanted very young or was hearing who became deafened and got cochlear implant. I must stress to you and remind you that the environmental sounds are not always identifable and due to being implanted and only hearing from one side only, the location of the sound source is impossible.

As BSL and the Deaf identity has not been threatened by born Deaf adults getting implanted, more and more BSL users Deafies are getting cochlear implants. I am amazed by how fast cochlear implants are spreading within the Deaf World and also how cochlear implants are becoming more and more accepted.

It was brilliant to meet my Deaf friends in Cambridge today as we have extremely similar experiences with our hearing experiences with the CI and dealing with similar attitude and expectations of hearing people. One of my friends had her implant for 6 months and she was concerned about her lack of progress and when I told her what I went through, she felt much better as I went through the same and that it was normal for us. The other friend only had his CI op last week, but meeting us and listening to our experiences will help him what to expect and what not to expect.

What a great time that I didnt get home until 2am!!

Wednesday, 13 October 2010

Apple's delight

And...following my last blog date in March this year - I can glady say that I have just upgraded my mobile to Apple's iPhone 4. What a Godsend!!! All the information I need on my fingertips and no need for the text relay service. The iPhone along with my Nokia Communicators is the best mobile and most accessible mobile I have had. I got rid of my BlackBerry the day after I got the iPhone :-)

Long time no hear!

Hello, sorry to have been so long. I have been having a very rocky journey with my CI, that I have actually began to wear it less and less. The problem that causes this is the attitude and high expectations of some hearing people. Life has also been pretty stressful with the fact that I have had to deal with so many things go wrong at home by problems caused by other people making careless mistakes. One of which was that I could not see out of my right eye for 5 months leading me to really struggle and was told by the opticians "there is nothing more we can do about it!" Being profoundly deaf and relying on British Sign Language to communicate, this was an absolutely horrific thing to say. Luckily, I discovered exactly where the error was! It wasnt my eye, it was the stupid optician. He had given me the WRONG prescription and didnt even bother to check that when I went back to try and sort it out. I was given a + prescription for my right eye was it was supposed to be a - prescription. I then went to a different optician near my work in May and he confirmed that I was right and that the other optician was wrong. I have now had the correct prescription since May and my right eye has been perfect vision again since!

I had pulled out of table table club cos they excluded me from conversations as they expected my CI to tell me what they are saying. No matter how I tried to explain to them, they didnt listen and they destroyed my confidence in me making a real effort to try to integrate in hearing world without sign language interpreters. I have been to afraid to try to meet groups of hearing people without sign language interpreters since. I really want to join the local Badminton club but am so nervous that I would have the same bad experience again. I thought the whole point of CI was to improve my chances of taking part in hearing world socially without interpreters. That's not working - I still need people to be Deaf aware or use British Sign Language. I might try join the Badminton Club, but I am NOT going to wearing CI. Luckily for me, my social life is already in the Deafworld where I have been since my early teens, where I can communicate freely and at ease using BSL. I am delighted to hear that there is a Deaf tennis club which I am quite interested in going along to.

I still have massive ups and downs with CI. I have accepted the limitations with it, and I dont expect miracles from it anymore. The hearing people who expect miracles need to be told that this is never going to happen and need to accept my deafness limitations as it is..

I now dont wear my CI all the time as it is not worth wearing it in the situations where I have the wrong people around me (non deaf aware), in hearing groups where people dont adapt to ensure I'm following conversation live (why should I have to accept a summary at the end? I might have something useful to say or have a good idea to contribute too! by the time I have a chance - it's too late!! grrr!!), at my house on my own (cos any strange noise, I will NOT have a clue where from, what it is and no one to advise me - it would just freak me out). Sometimes this is so stressful, and makes me so angry that many times I have felt like quitting that implant, or throwing it in the wheelie bin and never to wear it again. I daren't due to the expense of it. Then I realise, yes the CI is only an aid, I have been warned by the CI cedntre that it would never give me normal hearing and I would never develop the pathways that enable you to comprehend speech auditorally. So with my lack of auditory experience, there is a limit that the implant can do. I now realise that the love hate relationship that I have with my implant is greatly determined by the awareness and understanding of cochlear implant limitations from people around me and the efforts they make to make sure that I am integrated. I cannot do anymore than that.

Currently my hearing aid is broken - not that I hear much out of it in the first place!- so am back to CI alone. What strikes me is that the quietest sounds I now hear with CI is 40dB! Last year when I didnt wear hearing aid in other ear where just wore implant alone, my quietest hearing levels went up to 15dB! That doesnt mean I can understand speech, I can never understand speech - all mumbo jumbo!! I have noticed alot of sounds are missing - hearing water starting to boil in a pan in the kitchen, the click from my oven when the required cooking temperature has been reached!! I didnt realised! Now going back to CI centre on 1st Nov in time for bonfire night. I am also needing to consider again whether its worth wearing hearing aid again -I have the most powerful one you can ever get - Phonak Naida.

Listening through a CI is such hard work especially when you are so used to silence for 33 years, that I still need CI free days, to enable my brain to take a rest. This can occur on any day of the week and anywhere. Thanks goodness for British Sign Language!!