Friday, 16 August 2013

One year on

I've done it! Almost a year on and with my implant still in place – I have to say, I LOVE it!

I had my final check up this week, just to check things over and see how I was getting on. I also had to do some speaking and listening tests.

For my speaking tests, I was filmed and presented with several different scenarios. For example, I was given six pictures and had to talk about what was happening in each one. Another was reading out a conversation between two people and so on. They use these trials to determine whether my speech has improved as a result of the change in my hearing.

We then moved on to some singing, "pitching" sounds starting from low to as high as I could get, and then from high to low. This was quite funny to do in front of the camera. As you might imagine, it's difficult to pitch a note if you can't hear yourself so I was being assessed to see whether I've improved since having the implant. I mentioned to them that I can hear my voice more now and feel I have more control over it. I know I sound a bit quieter too when I talk.

I was asked if I had done singing lessons. I answered no, but I'm thinking, shall I give it a go?

For my listening tests, I had to face a speaker, listen to several sentences and repeat them back. The sentences were random like "the letter landed on the mat", "the children went to the bus stop". When I did this test before having the implant, I heard nothing. With my implant, I got about half right. I was really pleased. I still have time to improve.

I've been encouraged to use the telephone, which I do use, although rarely, but more than I have done over the years. However, I'm happy not to use the telephone unless I'm making the effort or have to. However, the option is there and I know what to say if I can't make sense of what is being said. I ask the caller to repeat but in a different way so that my brain has time to try and figure out what they're trying to say.

We went away on holiday to Ibiza last week and had a lovely time. Addenbrookes were great. They sent me two letters for the security people at the airports, explaining that I have a cochlear implant and can't pass through metal detectors; one in English, another in Spanish.

They also provided me with a replacement processor (they bit behind my ear) via MED-EL, the implant manufacturer, just in case anything went wrong with my one.

At the airport security on departing the UK, I had almost forgotten what I was supposed to do as I was more concerned about a poor mother in front of me. She had several bottles of suncream in her hand luggage and wasn't allowed to take through onto the plane. The security guard grabbed them and dumped them in a bin. I suddenly realised that I needed to let them know I had an implant and wondered if she was going to make things difficult for me?

It all went smoothly, and there were no problems when coming back home from Ibiza. All very straight forward.

On the aeroplane I took my implant out, only because it was very noisy. My ears did pop a few times so I was glad I had packed some chewing gum and sweets.

When I say I LOVE my implant, it's not because it's one big miracle and that I'm "hearing" again. It's because it feels lighter, clearer, more hassle-free (from my old hearing aids) and it's also given me back some confidence. I also love the fact that I no longer have to worry that my hearing will degenerate as I get older – something that I had been worried about over the years. The level of hearing I have now will always stay the same, perhaps even improve slightly. It's up to me to carry on improving and I will persevere.

Don't get me wrong though, I do still have some difficult days. Especially when I'm surrounded by so many people talking at once and there is a lot of noise going on in the background. This could be children, or traffic or whatever there is. Sounds echo in the spaces like the kitchen for example and trying to listen to people talking is still really hard. There's only so much I can take when being with a lot of people and I've now learnt that when I'm tired, it means my brain has had enough and I need some quiet. It's only because so much sound is going into my head and it gets a bit too much. As long as people are aware, it makes it easier for me.

I've stayed in touch with a lot of my friends from my school days and gained new friends too, particularly those who are either considering an implant, and those who have already had it done. I've also lost some friends because they have their own views and dislike the fact that I had the implant done. Do I mind? Not really but I shall say no more about it.

When people ask me about the cochlear implant, I make sure that I'm not biased and I answer their questions as best as I can. I talk about my experiences and mention my blog to them. I do say everyone is different and that it doesn't work for everyone in the same way. I like to feel I'm there for them, in whatever decision they decide to take.

So, the first year is over. It's been a huge challenge. I wonder what my next one should be...

Saturday, 6 April 2013

Eight months on, how am I doing?

The answer? Probably that I've spent far less time focusing on my August 2012-fitted Cochlear Implant than I was hoping.  The last eight months have been a hectic combination of moving home, decorating, gardening and navigating endless, gritless, ice and snow-laden roads in our new rural location.

I admit to initially feeling rather guilty that I wasn't focusing entirely on my implant.

Only because I was given exercises to do, but just hadn't the time to do them. These exercises involved listening to audio books while trying to follow the words in the book, practising using the telephone, lip-reading TV presenters without using subtitles, listening to the difference between sounds like "castle" and "parcel" with eyes shut and so on.

But incredibly, and seemingly just through using my implant during the challenges of everyday life, I've experienced a huge improvement. I guess my brain should really take the credit for this, rather than me personally.

Perhaps most surprising is the fact that I no longer wear a hearing aid. I wore my hearing aid on the ear that wasn't operated on for a good four weeks before and then for a few weeks after the switch on. I wore it mainly for school runs to help me cope with conversations in the playground.

One day, I thought I'd go without it, and have not worn it since. It was extremely difficult and enough to make me cry, thinking "this is never going to work". I kept thinking "I can't hear anything". Everything was just noise. I could hear everything but understand nothing. I had numerous headaches and frustrations, but I was determined to stick with it - if only because it would be rather difficult to remove the surgically implanted device inside my head. I told myself I must not fall back and put my hearing aid back in. I must let my brain get used to the new experience.

We went to Center Parcs last week. Conscientiousness and organised as ever, I had told myself that if my processor breaks (the bit I wear outside my ear), I could rely on one of my hearing aids as a back-up. The last time I used my hearing aid was in September 2012, but I thought I'd better test it.  It was a job trying to squeeze the ear mould into my ear. I switched it on. I couldn't hear anything. I tried a different hearing aid (I've collected a few over three decades) and the same thing happened. I listened harder and realised that all I could hear were beeps and squarks - not unlike what I first heard when I had my implant first switched on.  I've worn hearing aids for thirty years but have now lost my ability to hear with them - without re-learning at least.

I won't talk at length, but in essence, having the Cochlear Implant has been an amazing experience. I'm not now "hearing" as some people may wonder, but I do seem to have got back the limited hearing that I used to have as a child, as well as gaining new sounds, resolution and interpretation that I hadn't even considered or knew existed.

People are keen to know what sounds I can hear now. They also ask why I can hear certain sounds only just now, rather than as soon as the implant was switched on. As I've found out, it takes time for the brain to "learn" these new sounds. I imagine it's a bit like muscle memory and learning to walk again after having an accident. It requires a lot of determination and patience.

I can definitely hear my husband's voice and my boys better than ever before. Speech sounds a lot sharper and clearer. It's far from "normal" but it is better.  It has improved considerably over the months, and was something that had been bothering me a lot from the beginning.

I did question myself as to whether I'm still "Deaf" for the first few months after the operation. It's strange and difficult to explain, but I'm sure a lot of people will understand what I'm trying to say. I still tell people I'm "Deaf" because I am, even though I can hear clocks ticking and taps dripping.  I can understand how some people feel trapped in a no-man's land between the Hearing and Deaf communities.

I still love signing and relish the opportunity to do so. It's just that my hearing aids weren't helping me as much as they once did. I personally felt I needed more hearing, and the confidence that comes with it, to help me cope bring up my two young boys. I didn't want to hold them back in any way.

I must say that my friends and family have been very encouraging and supportive, and this has helped a lot. Once or twice, I've pulled out my processor, and cried out "it's not working!" My close friends and family have spurred me on and for that I'm really grateful.

I'm due to have my eight month check-up in the middle of April. It has been four months since I was last at Addenbrookes in Cambridge. I'm wondering how my hearing test and audiogram will compare to my last, and my first. I'll let you know.

Thursday, 20 September 2012

New sounds for the first time

It was a challenge to take the boys back to school at the start of term. The noise in the playground. Voices everywhere. Children chasing around. Scooters and bikes rattling. I guessed it would be like this, so wore my old hearing aid on my other ear for support.

It was lovely to see old friends again, some of whom I hadn't seen for the weeks over the summer holiday. I should have prepared some words on how I was getting on and what I was experiencing, but it was and continues to be really difficult to explain.

During noisy times, the best description of the sound I'm hearing is like a jangling set of keys on a key ring. But it's not always like this. The biggest change I've noticed is being able to pick up quieter sounds. Seriously quieter sounds.  And higher pitched sounds too.

Here are some examples of what I've heard recently for the first time in my life:

  • Birds twittering in the garden
  • Leaves rustling in the trees, and my t-shirt flapping during a run
  • Clock ticking (if I hold it close)
  • Exercise bike in the gym "pinging" at the end of a programme
  • Match flaring after being struck on a match box
  • Candle flickering when blown
  • Smoke alarm (no connection to the two above)
  • Rice Krispies snapping, crackling and popping
  • Rubbing sun cream on skin
  • Spraying perfumes
  • Buttering toast
  • Rubbing hands together
  • Dragging feet on the carpet
  • Breathing (after a run...)
  • Remote control buttons when pressed
  • Difference between S and SH
Quite amazing really, and nothing short of a miracle.  But there's still a long way to go.  After all, I can pick up these new sounds and sometimes distinguish them from other sounds, but I'm not yet always able to remember what they are.  As they warned me, it's going to take a lot of practise. It's a whole new language. I can only imagine this is what it's like for babies, learning the sounds of life for the first time.

Listening to voices remains incredibly hard. Even now, I still cannot tell the difference between Dan and the boys.  It's a real effort to make sure I find the time to sit down in the evenings and practise listening.  Dan will say aloud the months of the year, or days of the week, or family names or numbers.  He reads out news articles as well, or paragraphs from books. I close my eyes and try to work out what he's saying.  The more I do it, the easier it gets.  But it's slow progress. Every word needs to be re-learnt. No doubt I will rely upon lip reading for a while yet.

One small success though - if Dan stands at the other end of the house, in the conservatory, and talks normally, I can hear if he's asking whether I want a cup of tea or mug of coffee. That's quite neat.

My next appointment at Addenbrokes in Cambridge is today. This will be my third programming session, where they will again check and adjust the range and volume of frequencies handled by my implant.  It will be another long day, but certainly interesting to see if it makes any further improvements.  Fingers crossed.

Thursday, 30 August 2012

Switch on - Day 0 (continued)

After a welcome and some introductions with the audiologist, I was handed my shiny new processor (the bit for the outside of my head) in Bordeaux Red and hooked up to her computer.  The switch on took about an hour, and unlike the name suggests, involved more than just a simple flick of a switch.

The implant cable which now sits inside my cochlea has 12 electrodes, which you can see if you look carefully at my x-ray image.  Each of these electrodes is responsible for a different set of sound frequencies, ranging from high to low tones.  The switch on process involves adjusting each electrode in turn, to produce a comfortable range of high and low volumes.

"Ouch!!!!" was my first reaction when I was connected to the computer.  I felt a loud, uncomfortable crash inside my head.  My instant reaction was to rip the processor off my head.  But I resisted, and the sound faded away.  The session continued like this for about 30 minutes, using the computer to throw different tones at different volumes at my implant - the quiet ones were fine, the louder ones brought tears to my eyes.

And then came the moment to listen to the real world... Click.  "Hello Catherine, can you hear me?  I've switched your implant on now.  Testing, testing, 123." I lip read her perfectly.  But what I heard was different.  It wasn't a voice at all.  It was just squawks and beeps and whistles.  It was same for every sound, voice or not.

Walking back to the car, I felt nothing but exhaustion. When we got home, there were so many sounds coming from everywhere and after an hour, I pulled the processor off, and wondered how it was going to work.  I'll be honest, I wasn't expecting it to be quite like this.

While not pleasant and consistently uncomfortable, this reaction is typical, so I'm assured.  My brain will take time to adapt.  But at the moment, it feels like there's an awful lot of adjustment to be made.  

Wednesday, 29 August 2012

Switch on - Day 0

The switch on happened today, and went smoothly.  I'll write a brief summary of the day shortly and upload some photos, but need to gather my thoughts first.  Before then, and over the coming days, I'm going to list all the sounds I'm hearing for the first time.

X-ray of my head

Here's an X-ray of my head, following the operation to insert my implant.  You can see the implant fixed to my skull, and the 12 individual electrodes on the curled wire which sits inside my cochlea.  Click on the image to see a larger one.

Monday, 27 August 2012

The "switch on" is tomorrow

Four weeks after the operation, the day of my "switch on" is almost here. On both Tuesday and Wednesday this week, I'll travel once again to the Emmeline centre at Addenbroke's in Cambridge, to receive a processor for my new implant, and then begin the process of getting it switched on and configured.

I'm desperately excited, but also nervous - in near equal parts. Over the past few months, I've tried to keep my expectations low. But it's difficult not to imagine a life with more hearing than I have now. Will it work for me? Will I be disappointed? Will the sounds I hear just be loud muffles, rather than the quiet ones I hear now? Volume is nothing, clarity is everything. And what about everyone else? My friends and family have been so supportive, I don't want to let them down.

It will be a shock at first. The auditory nerve on the right side of my head, which carries the electrical signals from the implant, won't know what's hit it. From carrying nothing more than a slowly decreasing, drought-laden trickle over the last 34 years, to a gushing deluge in an instant.

Of course, my brain won't recognise most of the signals immediately after the switch on. I've been told I'll hear robotic beeps and whistles to start with - whatever they really sound like. It will take time for my brain to piece together the new sensations with the sounds that are causing them. How quickly this happens, if at all, will depend upon how quickly my brain can adapt. They say it's usually as good as it will ever be after a year.

Whatever happens over the coming days, weeks and months, I know that commitment and dedication from me, and patience and support from friends and family will play a huge role. And from that point of view, I know I'm in the best possible place to make the most of this opportunity.