Thursday, 2 June 2016

5 year anniversary

Today is an emotional one due to the date. 5 years ago I visited Southampton University to have my cochlear implant activated and tuned in.

Up until this point I had been pretty much completely Deaf for 19/20 years. Due to a history of Mumps and a brain tumour called Acoustic Nueroma I lost my hearing in 2 stages. They pretty much dragged me down into a place where I lost a lot of my self belief and confidence. Hard times yes but I am to stubborn to give in and carried on the best I could.  It wasn't all doom and gloom.

About 6 years ago I had an old analogue hearing aid break on me (it helped with certain pitches of noise but not sound if that makes sense) which caused a few problems as I was told my hearing problems were not suitable for the all digital aids the NHS were now dealing with.  They sort of sorted one out but while this was going on I asked about the possibility of a cochlear implant? I had turned one down many years ago for various reasons. I, at this point had a grown up daughter, a grown up son and a younger son of 8. I was after any improvement I could get on just loud tinnitus and feeling the kids shout or laugh/whistle but not actually hear it.

Long story short I passed the hearing test to be referred, just!, and a bit further on in the year was invited to the University to meet 2 people who had previously had implants and were willing to talk to us and answer questions we may have.  My daughter came with me, we were given a presentation and had questions and answers.  All seemed to good to be true and I hardly dared to hope.

Over the next month or so I had various hearing tests and assessments. And finally I got the long awaited news that I had an operation date in April for my implant if I still wanted it? I had passed all my assessments :o)

April came and I had my operation.  Woke with a massive football sized bandage on my head.  I was x-rayed the next morning and sent home with a small chunk of hair missing and being told not to wash my hair for a month I think it was.  Not to get the wound wet.  I of course managed to wash my hair without getting my wound wet as it drove me nuts.

6 weeks wait before the implant could be activated and tuned in and to see if it would work. I still at this point was still not holding up much hope.  I didn't dare to dream I would hear my children and my first granddaughter when she was born in the following month. But the day finally arrived.  My daughter came with me, and I was so grateful not to have to manage on my own on this day. After lots of fiddling and beeps and computer stuff it came to the point it all got turned on. I got asked can you hear me? by the Audiologist. I went to say I can, then stopped, and said Oh my god I can hear myself! And then I heard a giggle behind me, it was still unmistakable as the last time I had heard it from my 2 year old daughter years ago!  I turned and looked at Leanne who said something along the lines of 'oh shoot she heard me!' I could hear Leanne!!!! I was so taken aback and emotional I couldn't even cry at this point.

With your first tune ins you have your first and then go back in a couple of hours and then in a few days, a week after, then a month etc until you end up at yearly then every other year.  So off Leanne and I went around Southampton Uni for a few hours wait.  We went to see some of Andy Warhol's works in the Gallery exhibition they were holding, and then got some lunch.  To say I was distracted was an understatement. peoples voices everywhere and I forgot how loud people could be. At this stage voices were sounding a bit metallic and robotic. After a few hours and another tune in things were more natural but it did take almost 6 months before voices and sounds were more natural and recognisable as they once were. I will never forget spending those hours with my daughter listening to her voice.

We drove back and popped into see my Mum before heading back to the boys. It was just so comforting to hear my mums calm voice again.  Mum being Mum was testing my noise range out even on day one,  I heard the stirring spoon in a cup and the tapping of it on the top.  Her ring tapping on a table mat.

Then I came home to my sons.  Older son was looking after the younger one.  I came in and was not noticed for a few minutes, so I stood to one side of the door frame quietly and listened to the youngest making his 'happy'noises as he played on a computer game.  When I was noticed and the boys talked to me I almost could of floated on air.  First time ever listening to these boys and hearing them! I still don't have the words to describe the feelings from this day.

With all 3 of my children I never heard their newborn cries etc.  So when my daughter and her partner said I could be at my first granddaughters birth it was an emotional moment when Ever was born and she cried.  The room stopped to turn and look at me to ask if I had heard her.  I had :o) And it is to this day one of the best things I have ever heard.

As the months passed, then the years I have picked up better hearing.  I can talk on the phone sometimes with people if I practice with them.  It is not a perfect thing though, Sometimes I cannot understand the voices, mood and confidence can play a big part in something like phone calls.  I took Luke to a war of the worlds the new generation concert at the O2 in 2013 it rocked! And I am still going from strength to strength.  It's not just you can hear you have to keep working at it.  I listen to audiobooks and music daily to help exercise my brain for listening.

Music was always a big love for me and I hated losing it.  I was warned that Cochlear implants aren't designed to work with music.  Some people it works for others it doesn't.  After a lot of  music videos and lyrics on YouTube and a shed load of stubbornness I managed to understand some music and these days it is a lot more natural.

I won't go on much longer as it will get to long winded. But today is a day I will always quietly celebrate.  It changed my life in so many ways and gave me back some self confidence. It taught me so much.

Bit of a change in posts I know, I just wanted to write down a few words to mark the day before it was over

Take care

Jules xx

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