The Ear Trust Patients
Hear for Life
MY JOURNEY TO PERFECTION
I contracted scarlet fever at the age of 5. I remember being in hospital and being in isolation. As a child I didn’t recognise a change in my hearing but that is where it all began.
As I grew up my hearing worsened and by the time I was 38 years of age I had to accept my hearing condition – I then had my first hearing aid fitted – I was devastated.
Always striving to achieve better hearing, especially clarity, I visited 5 additional hearing centres. I can’t remember the exact year I was informed I needed to have a second hearing aid fitted but I do remember feeling a sense of loss.
As time went by, I became more isolated and withdrawn, lonely and depressed. My marriage suffered (my husband’s way to deal with this was to go out and make himself busy). My relationship with family (my grandchildren especially) suffered as they would avoid being around me which hurt me so much. I wouldn’t go out as I shouted at people and was totally unaware unless I was told. This affected my friendships as I became more and more withdrawn – isolating myself. My personality changed – I started comfort eating and my weight and health suffered as a consequence.
In 2009 I was referred to Chris Raine at The Yorkshire Clinic, who in turn referred me to the Cochlear Implant Unit at Bradford. Unfortunately, I was classed as borderline, so not eligible for the operation.
Trying to stay positive, I worked hard to lose weight and make an effort to see certain friends. I lost 3½ stones over the year and started to feel there was light at the end of the tunnel. This didn’t last as in late 2012, my hearing had a rapid change to the point of virtually no hearing. I gained weight very quickly and became severely withdrawn and depressed.
Early in 2013, (a last attempt) I contacted Huddersfield Royal Infirmary and they referred me to the Cochlear Implant Unit again, registering me as profoundly deaf. They in turn set the wheels in motion. Several appointments and tests later, NICE agreed funding and in October 2013 I had the operation.
Excited and very apprehensive for the ‘switch-on’, anxious to know if the operation was a success and if I could hear. The computer connected – off we went – test completed. Then, like a miracle I could hear, although everyone sounded like Donald Duck (me included) – it was a success.
On the car journey home it was fabulous. My daughter and I chatted all the time (something we have not been able to do for a very long time).
Life is very good now – my grandchildren love having a Granny who can hear. My family and friends are delighted. My next hurdle is to conquer the telephone; hopefully that will come in time.
My journey wouldn’t have been the same without the support from all the staff (from the receptionist through to test, the op and ‘switch-on’). Everyone has been outstanding.
I hope my story gives you an insight into the experience of being deaf and the journey to operation and ‘switch-on’ that has changed my life to that of positivity and success.
Lastly, and most importantly, a huge ‘thank you’ to Professor Chris Raine, as without his expertise and skill I may not have been standing before you today to tell my success story.
The joys of conversation
Conversation; something we all take for granted, but conversation is something that has been sadly lacking for the best part of 15 years in our lives.
Most of you who have known me for any length of time will know that I have had hearing problems since about my late schooldays, but over the last 10-15 years, my hearing has gradually diminished to such an extent that I relied solely upon lip-reading, hearing the odd word and making wild guesses. This has meant that conversations in the house tended to be kept as short and to the point as possible because frankly it was exhausting repeating, writing things down and using fingerspelling.
A New World
That is all over now, as I was fitted with a cochlear implant at Bradford Royal Infirmary in March this year (my first time as an inpatient, ever, and since). For those who do not know what a cochlear implant is it is an electronic device implanted under the skin in a neat crater in the skull along with wires leading through the inner ear into the cochlea, where it stimulates the auditory nerve with electrical impulses and the brain interprets these as sounds.
Externally a “speech processor” (a clever miniature computer) is fitted and this has an aerial that fixes to the implant using a magnet on the internal bits. See the diagram adjoining.
It would not be too over the top to describe this as life-changing. When I went to the switch on a month after the implantation, the people at the centre, as usual were writing things down in a notebook for me. Half an hour or so was spent setting levels, using electronic beeps, and then the computer was disconnected and the microphone switched on. I heard sounds, and these sounds gradually mutated into words, and within 5 minutes of that we were talking. Everything was so clear! I said “good grief, I sound quite extraordinarily posh” and then we were all laughing and patting each other on the back as the notebook was left forgotten in the corner of the desk.
A chance to talk at last
After this Sandra and I went outside for lunch and we sat and talked for an hour without any problems at all. It was fantastic. We had a second mapping session and went home, and there, round the table at dinner, all four of us, me, my wife and the girls just sat and talked for the next 1½ hours. It was a great experience and I began to realise just how smashing they all were. We had a wonderful time.
Since then things have got better; I can talk to some people on the phone (not everyone has a good telephone voice); happily Sandra and both the girls are easy. I can use a mobile phone with some people and have surprised people at work by ringing them up instead of walking round to their rooms to arrange something. I can hear the news on the radio and I can hold my own in a conference room with decent acoustics. I have also learnt a bit about the vocabulary of my apparently butter-wouldn’t-melt-in-your-mouth daughters that somewhat surprised me!
Day to day
There are limitations of course; it does not work all that well in a large and noisy crowd; it can’t filter what you want to hear from the background, music is not terrific (though improving) as the speech processor had difficulty interpreting the myriad tones that harmonies are made up from. But I’m not complaining. I can talk to about everyone and understand what they say without any of the absolute total pain that was the norm for when I was wearing hearing aids.
As I said it is not over the top to describe it as life changing; hearing out I could hear sounds, I could hear people talking at me, but the sounds were incomprehensible. Now, I can understand you pretty well, those people chatting to me on my left and my right and across the room. It is a new life for me, and I cannot say enough times, how much better life is for me following all that has been done at YCIS, to whom I shall be eternally grateful.
19 May 2012