I bet you are wondering what it’s like!
Totally. And. Utterly. Bizarre.
Triangle percussionists have taken over my ear.
Remember playing the ‘triangle’ at school? Well, imagine everything I am hearing translated into that sound. That is the cochlear implant for me.
As I type on the computer right now, it’s as if the keys are either triangles dinging, or perhaps one of those old 80s electronic Casio Keyboards, and every computer key is making a dinging sound. I kid you not. I am really ‘playing’ my computer.
If I say that, it sounds like one long beep.
When I click the mouse, it is such a clear, nice, satisfying click! I bet that is going to annoy me later!!!
My new favourite words are “wheel” and “forces”. They sound TOTALLY MEGA AWESOME with a cochlear implant.
Actually, maybe another way of describing it is as if Kraftwerk had set up and was translating every sound for me.
If you have ever heard Kraftwerk, then you will know what I am talking about when I say that it sounds like they've moved into my head.
So I can hear pings and bips and bops and zings and more pings, some zoinks, robotic gings, paps, whizzes, swizzles, dongs and midges, wasps and bees.
Everything also sounds robotic. Very, very robotic.
So, should I start from the beginning?
We went to the Sydney Cochlear Implant Centre (SCIC) this morning, and it was all a bit out of the ordinary. The NSW State Minister for Health, John Della Bosca, had decided to use my switch on to launch some extra funding for the SCIC’s Adult Program.
Whoot! Extra funding! (They must have read my blog post “How much did my cochlear implant cost me?“.)
So, the Government has agreed to fund something like 15 extra implants for adults on top of the already existing 44. Might not sound like a lot to some, but when you realise that every implant will cost almost $30,000, you can see why it’s a big deal.
So, when we arrived, they had set up the ‘switch on room’ upstairs, with video cameras, so that it was beamed downstairs to the surgeons and ministerial staff, and journalists in the press conference area. Talk about pressure, man.
L-R: Rachel Stawski, John Della Bosca, journalists from the Daily Telegraph, Sharan Westcott, and my surgeon, Professor da Cruz.
Luckily, Ben and mum were allowed upstairs to experience it with me. And I was REALLY happy that my surgeon, Professor da Cruz, was able to come. He apparently had a day full of surgeries – but managed to slip out for an hour or so in the middle (I am sure no one was left mid-surgery!) and be there for the switch on. How incredible is that? “Oh, just gotta pop back in a few minutes and finish that electrode array placement”. Nice! So was happy to see him there, because he was the one that ‘put it in’ so to speak. Nice that he was able to view it actually working.
So, we sat down and Rachel and Sharan plugged me in. Ben just watched bemused.
Getting plugged in is a bit fiddly. I was pretty nervous at this point. I mean what do you say to waiting media and a ministerial party if you can't hear anything! Gah!
A switch on usually takes an hour or so. To set everything in the electrodes, they do a test to see if they are all working inside your ear (you can’t hear that test), and then each electrode is activated, and Rachel asked me to tell her whenever I heard three beeps in quick succession, for each tone. She said they would be really soft at first – but I wasn’t prepared for quite how soft. And it wasn’t really sound I was experiencing – more sensations!
So, she started – and I was thinking: “Hang on, what was that? Was that a sound? No?.. No. ..Yes! …No?.. I think? …Maybe? ….No….” it was really hard to tell.
Mum and Professor da Cruz sit waiting to see if I can hear. I'm thinking to myself: "Was that sound I could hear?" It was so hard to tell - it just sounded so faint and strange - like nothing I have ever heard, so I wasn't even sure if I was actually hearing anything!
She turned it up and up and up, slowly slowly slowly. And by golly.
It was sound!
Holy crap, I heard that! It was a beep!
So then of course I started to giggle like a maniac, because I was hearing tones and sounds that I had not heard in a VERY LONG TIME.
Even though they were obviously electronic, it was like they were stimulating my deadened nerves, waking them from a very deep sleep.
So, this wasn’t even the official switch on! This was just mapping them. Once they had all the beeps and tones ‘set’, then they switched it on.
Feeling gleefully happy that I could actually hear tones and sounds that I hadn't heard in ages. Maybe I might be able to play the piano yet!
Noise! Noisy noise! No understanding! (‘Like normal?’ Ben might naughtily suggest?)
Bells, pings, dings, all put together in one mish-mash so that it sounded like a high pitched static. And this was mainly sensations. I just do not know how to describe it any better. It is not like hearing normal sounds. It was like sensing a feeling in my head, imagine the sound that pins and needles would make if … they made a sound! Or it felt like I had eaten an ice-cream, and was getting an ice-cream headache. But it wasn’t unpleasant, even though it sounds bad.
If anything, I wanted it turned up louder.
It was great to hear those sounds. But totally and utterly weird.
Then came the test of speech.
OK, so I was hearing sounds … But the real question that I always had was … would I be able to understand what people are saying to me? I knew I would get lots of ‘noise’, but would I be able to decipher words and sentences? Would I actually be to ‘understand’ what someone was saying to me?
For the first few minutes, no. I couldn’t even work out a word someone was saying to me. But I could ‘hear’ them.
So when Rachel said, “ok, we’ll check you speech perception in that ear, switch your hearing aid off, and repeat back to me what you hear with just the implant”, I thought to myself - there is NO WAY I will be able to understand what anyone is saying to me. It is all garbled, all high pitched bells dinging. It doesn’t make any sense.
But then, as Rachel did the test, she covered her mouth and said some basic words.
The first word I ever heard in that ear, without lip-reading – was ”August”.
To my UTTER amazement, I actually could also hear her saying “January”, and “October” without lip-reading, and some other months of the year.
I mean, I did confuse March with November (don’t ask me how that is possible – not even the syllables are the same!). But, still – I got most of them. Wow. That blew me away. It was hard, but even though I didn’t think I would be able to make out the words – suddenly, there they were. My brain was already going mad trying to process all this new stuff in my head.
But apart from those simple words, I couldn’t really understand what was being said to me. It was just too ‘ding-y’.
My head felt really ‘full’ of something. Nothing was very clear. It just felt full.
I really just wanted to sit down somewhere nice and quiet, and just listen to easy words, maybe just with Ben and me.
But you can’t do that when the world wants to talk.
The Daily Telegraph was there to film a video for their website, and write an article for the newspaper about John Della Bosca's increase in funding for the SCIC.
After describing it to everyone, then I actually went back to Rachel and said “Do you reckon you could turn it up a bit more?? Right now?”
Already my brain had gotten used to it, and within an hour, my ears were wanting more sound.
So, she turned them up higher, and then that was it.
I got the run through of how to work it, how to look after it, all the extra bits and pieces I got in the cochlear pack, how to change the battery case.
And then everyone went home, and my family and I all went out to lunch!
So now I am at home, and I keep hearing something weird, and it is the talking on the TV.
I can hear paper crackling, but it is not very clear yet, just muffled. Of course, the computer keyboard is dinging and dinging like a percussionist, this is the coolest thing ever.
When we were in the car, I didn’t hear any indicator’s clicking like everyone says – but I did hear a strange alarm that went off when we parked the car, and Ben switched the engine off. He told me that it happens every time, it’s apparently to remind you to take the stereo with you! I had not really heard it until now.
So … as soon as I got home with Ben, he said “I’ll read to you!”, and asked me what book I wanted to read. I said “The Cheese Book”, which just lists cheese, HAHA. But he said “how about the Great Battles book?” and looked so hopeful, that I agreed.
So we sat together for about half an hour, with him just reading to me, and me following the words on the page.
It is truly amazing. I am having trouble hearing people’s voices, but that is because they sound like nothing on earth. It is like having to learn a new language. It just doesn’t sound like the english we know. I know that’s weird, and it’s hard to explain, but … you can see why you have to practice for months and months after this, just to be able to understand what people are saying.
Once I heard the bizarre cool way “wheels” and “forces” sound (terms taken and pronounced by Ben so nicely from his “Battles” book – they sound like a xylaphone sweeping up a scale, with robots harmonising in the background), I just realised how crazy cool this whole experience is going to be.
It will be hard.
I will have to totally re-train my brain.
But it’s going to be worth it.