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!!

Thursday, 4 March 2010

New 32GB Ipod touch

Today, I also bought a brand new Apple ipod touch (2nd generation) and 32GB. It is amazing gadget and how now I really wish I have an iphone and not my current BlackBerry!! Roll on October to my mobile upgrade date!!

Currently now uploading the lyrics onto itunes for all of my songs in my itunes library so that it can be synced to my ipod and at least I finally have the words!!!! With my CI, music is amazing, and now with sound and words available via the written lyrics showing up on my ipod, I have alot of learning to do!!!

Conference speaking!!

Today, I spoke at the CI conference in London "Advancing technologies" and spoke to hearing and audiology professionals about the BSL user perspectives of their experience of having a CI. As I am a proud BSL user from a Deaf background, I decided to use BSL to present my presentation and used the interpreters to voice over for me. It was brilliant despite my nerves when I was sat there on the Northern Line tube train (which deliberately decided to have delays) especially when I wanted my presentation over and done with. I kept thinking "Oh I'm gonna forget to mention this and that etc"! But despite the delays on the Northern Line, I still got there on time as I made sure I allowed for delays!!

However, as soon I had got up to speak in front of 150+ people, introduced myself, my nerves vanished, I became more relaxed, I remembered my words without looking at the script and just used my powerpoint bullet points as triggers and away I went and I had fun.

It went down extremely well with people. It was a real eye opener for people to be aware of the cultural issues that arise (grown up with Deaf Culture in Deaf World and trying now to understand "hearing culture"). Also that CIs for us are no "quick fix" and that we still rely on BSL for access although one to one is easier PROVIDING the speaker is deaf aware!

However I got challenged at the end.... there was an older man who was obviously born hearing, grown up hearing culture who was deafened later in life. He was asking me "Why did you use BSL when presenting and not use your voice?" I explained that BSL is my natural language and I have a Deaf identity and belong to Deaf World and so I should portray this as that is part of me and where I am from. My voice is not exactly that clear, kinda monotoned and whilst speaking across a hall of 150+ people, I'm not sure if all will understand me nor hear me? How do I know if I am projecting my voice loud and clear enough?

I am pleased to be able to get out there and raise awareness of the experiences of CI with born Deaf, Culturally Deaf BSL users.

Wednesday, 17 February 2010

Don't Panic!!! I'm still here!!

Hey all,

Sorry long time no speak! Life has been mega hectic and busy, not helped by a problematic laptop. Now I have a new laptop that is much much faster and reliable and therefore more free time available so can update my blog - hopefully more regularly.

What have the going ons been since October?

My implant has continued to be a massive rollercoaster. Environmental sounds and music are very very good through my implant so I am really happy with it there for those things. However, I really hate my implant for voices in groups situations and hearing voices as background noise as they all sound like a shed of chickens that makes no sense at all, even when just trying to follow something being said between two people, especially when no Deaf awareness is applied. Voice through an implant sounds best through an FM system or in quiet rooms where there is NO other sound, but I still need to lip-read and still need the person to be Deaf Aware. I am still unable to understand what is being said on a radio, so those are still out of my life. As for music, cinema and TV, providing I have the lyrics and subtitles in front of me, am able to follow along and with the pace of it quite well. Had a great time seeing Avatar 3D with subtitles recently and it was great to get the full picture thanks to the subtitles.

As a result of having been able to identify the places where I get benefit from my implant and the places / situations where I dont get benefit from my implant, it makes it easier when to call in the interpreter at work. Where I can lipread the person then my interpreters know to let me lip-read and they monitor closely the communication situation and they seem to know immediately when I am lost or start to be lost and they step in to my rescue at the right time. I know the situations (e.g. groups) and the people who I cannot follow, so I automatically go back my old way and use BSL and interpreter 100% for that.

The current biggest battle I am facing at the moment is the attitude of some hearing people outside of work. My work colleagues are excellent in meeting and understanding my needs. However, I am having some real struggles with communication and the attitude of some hearing people outside of work. Some people who known me since before my CI who were Deaf aware before have ditched their deaf awareness since I got my CI and now I find it impossible or extremely hard work tyo communicate with them. I find that quite upsettting and very frustrating. There are also the attitude of some hearing people out there who have discriminated me cos they have expected me to understand what they are saying cos I have implant my speech is good. I feel like I'm hitting my head against a brick wall sometimes and I am so exhausted and fed up with having to remind people that it is not a quick fix and that due to my history of deafness since birth, speech comprehension is very very unlikely and that they STILL need to face me and be DEAF AWARE when they talk to me. Also, I have alot of CONFUSION re hearing culture, and am finding that quite difficult to adapt to. Due to this so much hard work, I don't wear my implant everyday - it takes alot out of me. I wear it most days in the week, but there are a couple of switch off days where I can go back to my old ways.

However, I am delighted to be invited to speak at two forthcoming conferences on CIs where I will be speaking about the born Deaf BSL user perspective on the experience of hearing with a CI.