25 Feb
I feel I owe my regular readers an explanation.
I am sorry for not being a regular blogger over the last few weeks. Normally at this time, people who have just had a CI and have a blog, write regularly with their updates and stories, I’ve kept a low profile, passing the time away talking about Tinnitus Awareness week and um, nothing much else.
I feel almost embarrassed to write to be quite honest. And I’m frankly, scared to write too.
I have harped on for months now, about the wonders of the CI and how utterly brilliant it was going to be for me. And my main idea was that anyone who was thinking of a CI for themselves, should they stumble across this blog; would find helpful answers and support towards their decision by reading this my witterings.
I love writing, it would be my dream to make a career out of writing and taking photographs. But I know this is a tad unrealistic – I’m not that good. However I really have, over the last few months enjoyed having my two blogs – this one to write on, and the other to share my photographs to fill in that gap of yearning, just a little bit.
My blogging mojo for both writing and sharing photos, completely disappeared when I felt that I had fallen flat on my face, after struggling to get to grips with the CI. I feel silly about all the good things I wrote – but also worried that I’ll put people off getting a CI. I am also in denial a little bit, and not really wanting to write much about the negatives as it means facing up to them.
The truth is this:
I still have faith in Cochlear Implants. I still have faith in the system, the product, the audiologists, the procedure and the whole idea that is the most fantastic super hearing aid ever. I know too many people where it has been a huge success story for me not to have faith. I have read too many blogs by people who have taken to it really well, to not believe in them and I did enough research prior to my journey, for it not to make sense in my head.
But I feel at this stage, that it’s simply not going to work for me.
It may be, that time is still what I need. I hope and hope every day that one day I’ll be reading back on this and laughing at my impatience. It’s “only” been 5 and a half weeks after all, since I was switched on.
But it feels like so much longer than that when every day you hope this’ll be the day you notice that slight improvement.
By now I SHOULD have had SOME improvement, surely? It shouldn’t be like it was on day one STILL should it?
Time and time again, I read articles and blogs, watch videos of documentaries of other people’s experiences, none of them describe it how I do. Most talk of changes within days, or weeks. Not months.
What happens next?
I’ve got to keep trying, I owe it to myself, my family and friends who have supported me so wonderfully. My audiologists and my consultants who have taken such great care of me from their medical perspective. I will keep trying, I will keep wearing it. But it’s so damn hard.
Each day, I force myself to put it on, dreading it. Each day I find myself wearing it less and less. Can I be honest here? There have even been some days when I haven’t worn it at all. I’m just in despair, it’s so hard to tolerate. The distortion drives me crazy and I cannot cope with it on for long. If there had been the slightest improvement, the tiniest hint of clarity, that would be all I needed, to motivate me, to see the light at the end of the tunnel.
But it hasn’t happened. This is getting me down a lot. As you’ll know, I had such high hopes for the CI so I’ve had to reassess a lot of my expectations. I’m due back at work very soon, I’m on annual leave at the moment – but I know for sure that even in a month there is no way I’ll be able to use the CI at work, so that’ll bring my usage down even more.
I’m feeling sheepish, disappointed, angry, embarrassed, upset, frustrated, annoyed and most of all, a bit of a let down. I am not someone who gives up easily, I really am not. I am worried people will think I’m giving up at the first hurdle. I promise you I’m not.
The only thing keeping me going is that I cannot find a single story anywhere, where a Cochlear Implant has failed for someone. It may be that it has happened – in fact it must have happened. But it’s not recorded anywhere I can find online or on paper. So therefore that must give me hope.
x
8 Responses for "An apology and an explanation"
You are so like me. I want to grab experiences with both hands and just give it a bloody good go, and squeeze every drop of experience out of those situations… but I get utterly dazed and confused when something doesn’t go quite to idealistic plan. It just doesn’t happen to me. I come to a barrier, and I feel like I have no idea how to get around it and carry on.
You’ve invested far to much time, heart, emotion, pain, tears, to let this fall by the wayside. Please don’t lose hope. I know there is a shortage of hope in the world at the moment, but I can lend you some to get you through the dark times. I have faith and hope in it working for you.
Your brain might take a bit longer to adjust – just as some people take longer to learn French, or Maths – and you strike me as someone who is a fast learner so this must be extremely frustrating – your brain might take longer to learn “hearing”.
Hang in there. Baby steps. And if one of those steps is having a day off (or more) then so be it. You can come back to it tomorrow. 🙂
awwwwww (((hugs))). I feared that your blogging silence was bad news. I’m SO sorry you’re having such a tough and disappointing time.
Do the audiologists haven anything to say?
Sending loads of virtual slices of cake, cups of tea/coffee and even more hugs.
Don’t give up. I know it’s hard and easy to say for me, but everyone it’s different. But you must wear it so that you are able to train your brain in listening, as so it gets better. Take each day as it comes, rather than thinking too far ahead. I’m sure you will get there in the end. I send hugs your way. 🙂
Really, really, don’t give up! And wear the processor as much as possible. When you wear it, does it bother you, or does it just not help? If something is unpleasant about it, get thee to your audi right away! If you just aren’t getting sounds, it is important to keep the thing on all day long.
Deb over at Hearing Journey said this about her friend:
My friend started noticing improvement about the 3 month mark. We had gone out to lunch at the two month mark and she was wondering if she had made a mistake in getting the CI.
The next lunch we did, about a month later she was much more positive and I was happy to see that.
Howard here again. The key point is that her friend kept the processor on all day, every day. You have got to PROMISE me to do that!
Hey Bryony
Are you keeping a notebook to record everything that you hear, to show to your audiologist? You are hearing something, and it’s only been a few weeks. I’m not expecting to hear anything much for the first couple of months, well, not anything sensible! The fact that you’re hearing SOMETHING is good, your brain just hasn’t caught up yet. It takes months for a baby to learn to walk, and it can also take months for our brains to learn to hear. Some people learn to hear very quickly, others don’t. Hang in there and it’s important to keep wearing the CI as you’re retraining your brain every minute you wear the CI and make your brain listen to what’s coming in.
I used to wear a FM system at school, back in the days when I could hear enough to use one. Every September, I woud hear nonsense for the first 6 weeks then bingo! one day, everything made sense. That happened to me every year. I guess the same principle would apply to the CI.
Do you want to meet up to talk about it? 🙂
Hi Bryony
Another suggestion. As you have the same CI as me, I know that you can ask your audiologist for help from AB. AB can send an audiologist to come out and help. Please would you do that? They can then sort out any problems for you and answer specific questions more easily than your regular audiologist can.
Don’t give up!! Have you started a hearing journal? Write down those things you hear each day – maybe a footstep or a door that shut or the microwave beep. Try to look for at least one new sound for each new day. Take your hearing journal WITH YOU to your audiologist and discuss what you are hearing and what you are NOT. Make sure your audiologist helps you with the map to be the best it can be to help you increase your list in your journal.
Take an hour each day to listen to a book on tape – and read along as you listen to the book. Make the connection between the sound you are hearing and the word you are reading.
A cochlear implant is not a “flip a switch” and everything is wonderful. It takes patience, time and practice. You can do this and there are so many awesome blog readers and people over at http://www.hearingjourney.com that are cheering you on. But remember to do things in baby steps – it takes time, patience and practice to achieve success.
Kim
Hi Bryony,
Lots of people at Hearing Journey are wondering how you are doing, and offering advice. Pop by and give us an update!
http://tinyurl.com/ycpwy4z
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