Got an interesting comment from someone who’s read my blog:

I am glad you are purporting success with the device, and are such an active advocate.  Indeed your story is miraculous compared to the ones I have come across (numbness, tinnitus, excruciating pain from hair, white noise).  So I am wandering if you are another version of the ‘cochlear volunteers’ distributing erroneous information for a kickback your readers are not informed of.  I guess if you publish this and an accurate answer, I need not be suspicious and outraged by the ’social networking’ propoganda cochlear will go to maximise their profits.
Ruth

And I think it’s a really valid comment.

I was extremely suspicious of anyone that told me a cochlear implant was good before I had one, and for good reason. It’s just hard to believe how it could be as good as they say it is. And you read all these blogs, and talk to all these people, and every single person has a different experience.

I decided to get an implant after I saw a deaf woman I know who had two cochlear implants talking on the phone. That’s when I thought, oh well, it might work – and if it doesn’t, I havent lost anything.

After I was booked in for this surgery, I started this blog because I thought everyone would think that an implant was a miracle cure, and think I would be ‘fixed’ once I had it, and I knew it wasn’t going to be like that. I wanted my friends and family to know the truth. ‘Course the truth turned out to be pretty good for me.  But I didn’t know that was what it was going to be like.

Perhaps my optimism about the implant has come from the fact that I really didn’t expect it to be that good.

My only expectation was really that it would  help with my lip-reading. And I knew that it might not even do that. So I was realistic.

My wish was that I wouldn’t have to lip-read, but I figured that was a wish only.

So, the bad parts of my experience are few… I was having dinner with friends the other night in a pub in Perth. We were discussing each other’s cochlear implants (there were three of us there who had just recently had one in the past year.)

We were talking about the horror stories, and I mentioned that I freaked out the day after my surgery when I leant forward and this rusty coloured fluid came out my nose! Thought my brain was melting! But it was only a few drops, and then it stopped, so I figured that I was ok. I forgot to put that in the blog, but I guess you could call that a ‘bad’ or scary part of the surgery. Actually, that sounds lame. It was not really blog mention worthy.

So, what other things suck about cochlear implants? because I really have been too complimentary to them, haven’t I?

Well. let me count the ways:

  • I hate the way it feels on my head, both the processor and the internal bit. But it’s worth it to be able to hear ok, and I figure I’ll get used to it. Hey, I’m an eternal optimist. But I must say, I wake up in the middle of the night sometimes with my ear feeling a bit numb, and thinking ‘oh god, I have metal in my head’. That is a bit yuck.
  • It’s a stupid design. Every time I want to change a program, it takes a few seconds to press.
  • I worry about the bit inside my head breaking. If it breaks, I am stuffed, because getting a replacement internal bit is not guaranteed to work as well as the first one, because removing the implant damages in the inner structure of the ear, i.e. the cochlea. So that is something that is in the back of my mind a lot – I might lose all this at any time.
  • You can’t do contact sports any more after this. That kind of sucks, even though I dont play contact sports of any kind – I just dont like being told “You cant do this any more because …” you know?
  • It kind of sucks how many batteries it takes – I spend $1 every day on a battery, that’s $365 per year. They are fiddly little things too. When I am 100 years old it’s going to suck changing those things.
  • Sometimes I can hear on the phone and other times I can’t. Sometimes I can hear TV, other times I can’t. It’s not consistent.

As for Cochlear Ltd being the best cochlear implant company, I don’t know about that anymore. I mainly support them because they are Australian, and pretty reliable.

From the research I have done, it sounds like Med-El would be a good cochlear implant – it apparently has a slimmer electrode, which goes deeper into the cochlea, and gives you more spectrum of sound, and therefore makes speech and sound more natural.

I am seriously considering getting a Med-El for my second implant.

But who knows!

So there you go… And what’s the answer to the million dollar question?

Is the cochlear implant really that good? Well, the answer is …. for some, yes. For others, no.  It’s as simple as that.

Everyone’s different, and that is probably the most frustrating thing about a cochlear implant ever. There is absolutely no guarantee about how it’s going to work.

I was brave enough to deal with the possible consequences, as I was well aware of the possible outcomes – which was that it might not help me at all.

It’s scary.

And that’s why whenever you meet someone who’s had a cochlear implant, or the parent of a child with an implant (because they’ve had to make the same decision!) you should think about the difficult decision they made, and no matter what outcome – give them a pat them on the back and say: “Respect to you for being brave, mate.”

Advertisements

30 September 2009

Re: Inquiry into Hearing Health in Australia

To the Community Affairs References Committee (community.affairs.sen@aph.gov.au):

I would like to make a submission to the Hearing Health Inquiry.

I am a deaf young professional living and working in Australia.

The current Australian hearing health system is antiquated and not working well at all – it makes being deaf in Australia very difficult and expensive.

For example:

  • my hearing loss was first discovered at age 11, and I was given hearing aids without any sort of rehabilitation or support. it took me ages to get used to them and to wear them. It was a traumatising experience as a child. I didnt wear the ones I was given at 13 until I was 18, because I hadnt been given adequate support in understanding how to use them
  • When I did start wearing them, I received free hearing aids and batteries through Australian Hearing which was fantastic, and really helped.
  • then suddenly at the age of 21, just when I was unemployed and studying full time at university, I was told I could no longer get any services through Australian Hearing
  • I had to find a private audiologist, and many that I had didnt understand my hearing loss well enough, and I bought hearing aids from each of them, when one would have been enough. Each hearing aid is about $3,500 to $4,000. I was also convinced to buy expensive additional gadgets  for up to $1,500, which I have never used, because it was not correct for my hearing loss.
  • One of my hearing aids broke and I had to buy a new one, as it was not covered under private health insurance
  • I had to get a personal loan to pay for it, and then I had to go on Centrelink payments as well, because I had trouble paying my rent.
  • I have just received my first cochlear implant. I had to take out private health insurance in order to get this over 3 years at $90 per month. None of my hearing friends pay anywhere near this amount for private health insurance.
  • I had to take out special cochlear implant insurance at $300 per year to cover my cochlear implant, when someone who has an ipod can get that covered with their home and contents insurance. I have tried to get my cochlear implant covered under home and contents, and all the big insurers refuse to cover them.
  • I’ve had to buy a special TTY phone and special Telstra HipTop mobile phone in order to communicate with people, as these are the only two I can use being a deaf person.
  • Audiologists charge huge amounts for ear moulds when you don’t need them (up to $250), and for repairs (up to $500), and for batteries (they cost me $300 a year).
  • I have been to see the Minister for Ageing about these issues, but as hearing health is under Ageing, it’s not the main part of the portfolio. Hearing health gets lost in Ageing. It needs to be put over into Health.
  • Hearing health is not an ageing issue, I am only 29 years old, it is a health issue. Many of my deaf friends are under 30 years old.

There is an essential inequity as to how hearing health is perceived as compared to other health issues, even though hearing loss is one of the most prevalent health issues in Australia.

According to the Access Economics Report, one in six Australians has some form of hearing impairment, and this is projected to increase to one in four by 2050 (from Access Economics (2006) Listen Hear – The Economic Impact and Cost of hearing loss in Australia).

I would like to see the following changes made to the way hearing health is dealt with in Australia:

  1. Hearing health should be moved out from under the Federal government Ageing portfolio, and placed under the Federal Government Health portfolio, alongside eye health. It currently does not receive the attention it deserves under the Ageing portfolio.
  2. Subsidised government services should be offered via ‘Australian Hearing’ to people between the ages of 21 and 65 if they are on a low income, unemployed, full time students, or part time students. In Australia there is currently no help for these people in affording hearing aids, implants and other hearing health services.
  3. Insurance companies should cover hearing aids and cochlear implants if they are lost or broken. Currently most insurers will cover silly things like iPods, but not a cochlear implant processor, which is $8,000 to replace, and vital for many to be able to hear.
  4. Former child clients of Australian Hearing who are not unemployed, students, or on low incomes should not be suddenly cut off from services of Australian Hearing. They should be able to pay for services to stay on at Australian Hearing with their audiologist.
  5. All hearing aids, cochlear implants and other hearing health aides should be able to be claimed as a tax deduction once someone starts work. Currently you can’t claim expensive hearing aids as a tax deduction.

Thanks for accepting my submission.

Sincerely,

Kate Locke

Back in August, I attended the Deafness Forum of Australia’s captioning awards.

It was a really exciting event – I had no idea how big, and impressively run it was. John Howard has recently become the Deafness Forum’s ambassador, so he was there at the dinner. That was a bonus.

I have some great photos below. I actually won an award. It was a total surprise – it was the Roma Wood Community Award for dedication to improving captioning and media access across DVDs, cinemas, online videos and TV in Australia.

I am very honoured to get that.

And the other reason it’s nice to win it – I tell you what – I have been making noise about the lack of captioning for so long, and it is quite depressing how little movement there is in relation to it.

It’s truly heart breaking sometimes to see how uninterested big companies are about whether or not a person with a disability can access their services.

Can you imagine what it is like to not be able to do something as simple as watch TV? When a TV station doesn’t caption its programs, that it what happens for people with a hearing loss.

It is worse for blind people – audio description is more expensive, and harder to get on different types of media.

Yes, it’s distressing to have a hearing or vision impairment! You can get very cut off from normal every day things that people take for granted.

So anyway, it was a nice change to have all the industry types in one big room, all in unanimous support of accessibility of media for deaf and hearing impaired people. (Note: A noticable absence was the ABC  – every other TV station had someone there, but the ABC declined to send anyone. That was a bit of a shock to me! I’ve always thought the ABC was the best in this respect. Obviously not.)

Check out the photos below:

Telling him about the implant: "That's right, Mr Howard, they DRILL INTO YOUR HEAD!!"

Telling him about the implant: "That's right, Mr Howard, they DRILL INTO YOUR HEAD!!"

Telling John Howard about the cochlear implant with Maureen Shelley, Daily Telegraph Journalist.

Me: "Pfft, it doesn't hurt a bit!" Mr Howard: "Riiight." (*Maureen wimpers, wipes eyes!*)

 

Another one of me telling in great detail how gory the operation was. Just kidding! We all know my surgeon, Prof da Cruz, iz da man.

Me: "Why don't you get one, Mr Howard".... Him: "Are you kidding me!!!??" (Just joking!)

Talking to all the cinema, TV, and DVD distributors after winning the community award: "You've all got to caption everything, or you're in biiiiiig trouble!"

Talking to all the cinema, TV, and DVD distributors after winning the community award: "You've all got to caption everything, or you're in biiiiiig trouble!"

Standing with Hugh and Andrew from Printacall - they sponsored the community award - thanks so much guys, you made my night.

Standing with Hugh and Andrew from Printacall - they sponsored the community award - thanks so much guys, you made my night.

Before I start on telling you what I am hearing now, I want to just waffle on about something else for a second!

The best thing about this blog for me…

The very best thing about this blog for me has been the parents from around the world that have either emailed me or left comments on my posts, telling me how this blog has enabled them to understand a bit more what it is like for their own hearing impaired baby or toddler – and maybe allows them to kind of ‘experience’ what it must be like as a kid to have a cochlear implant.

Because you can’t really ask a 9 month old baby, “How does it feel?” or “What exactly are you hearing?”

Imagine:

Baby: “Well Mum? Your voice really sounds sooooo stoopid when you coo to me and talk in ‘mumsy gibberish’. Stop that, I aint a baby! Oh, hang on … I AM a baby. Whatever.”

The comment that really struck me was one from Iman (at the end of my previous post). It really made me feel like awwwww! I mean, imagine being a mum to a baby with an implant – it is, in some ways, kind of heart rending, you know, like as a mother, you just want to be able to know and understand how your child is feeling – so I felt really good that maybe that’s what my blog was doing – giving a tiny little voice to babies out there that have cochlear implants – see Iman’s comment below:

i gave birth to my third child, 19 months ago and he was born hearing impaired, with profound hearing loss. he has had the implant for a year now and he is doing really good but he has difficulty sleeping at night, he will sit in his bed for hours during the night awake and talking to himself and i never understood why. when reading your blog about how you would still hear noises even when the processor was off, it made sense. i would love to know how it gets down the track.
Iman

So that was totally mega cool, and really made my day.

As for an update on what I am hearing now, see below:

8 weeks since surgery, 4 weeks since switch on … What can I hear now?

Well, it is amazing – it sounds much more natural now.

Audio book

On the plane home from Queensland on Sunday night, I plugged myself (using the Cochlear Personal Audio cable) into Ben’s iRiver ipod thing.

He had to show me how to use it – I am so totally web savvy and tech savvy, but when it comes to things that only produce sound, I have never used them!

And I listened to my audio book that Ben had downloaded for me.

I could hear it so clearly, even with the roar of the jet engines in the background. I was truly amazed. I flipped through the book, kept finding the pages I was up to, and then decided it was too easy following along with the book.

And I leant back, and listened to the story with my eyes closed!  *sigh*

Conversations without lipreading!

At home last night while cooking dinner, Ben and I had a full conversation without me looking at him. As we were preparing stuff in the kitchen, he was telling me the synopsis of this new series on TV called “The Last Enemy”, and it had some weird futuristic bizarre plot-line involving biotechnological diseases and government espionage – the usual.

The only reason I realised that I was listening to him without looking at him was because Ben stopped talking mid-sentence, and said in his best hurt voice: “Well, if you’re not interested, I’ll stop telling you!”

And I looked up, and said “I AM listening!” And we both realised that because I wasn’t facing him, he thought I couldn’t hear him!!!!!

We both had these huge grins on our faces!

So the rest of the conversation, Ben said to me “You have to say ‘yes? yes?’ after each sentence so I feel like you can hear what I am saying!”

It was hilarious.

Our conversation was tainted by those typical broad Aussie accents where everything ends in a question:

Ben: “So there’s this disease outbreak that was hidden by the Government?”
Kate: “Yes?”
Ben: “And the brother of the bio-terrorist scientist gets blown up by a land mine?”
Kate: “Yes?”
Ben: “but then he comes back from the dead, because he didn’t really die, he just faked his death?
Kate: “Yes?”

It might not sound like it, but to me it was a wonderfully satisfying conversation!

I went to the Cinema!

Oh, and I went to a movie at the cinema for the first time since I was about 24 years old – a movie without subtitles I mean.

So, it’s been 6 years since I have seen a normal movie at the cinema.

I was with my three girlfriends, we were having a girls weekend at the Gold Coast, and were killing time at Pacific Fair before our flight left.

And we decided to see ‘District 9’, (I don’t know WHAT we were thinking – it’s about Aliens and things getting blown up).

I was a bit worried that I wouldn’t be able to hear much, but I was amazed that I managed to get maybe 75 per cent of the movie! There were lots of moments when people shouted something as they were blown up, or mutilated, or maybe there was a voice-over during a shoot-out – these ones I had trouble hearing – but the majority of it I could hear!

When we came out of the cinema, I was so excited, and said to the girls: “Man, I could hear almost everything, I understood it all! This is great! The only thing I didn’t get was – why was the guy smiling when was blowing up the alien’s babies? I must’ve missed something there.”

And they were like: “Ah – we didn’t get that either. No idea!”

HAHA!

So there you go.

This scientific invention, the cochlear implant, is ACTUALLY WORKING!!!!

Today Ben and I drove out to Westmead Hospital to see Professor Da Cruz to get the final layer of bandages off, and to check that everything has healed up.

I was pretty excited about this, because it was also the day when I could get the go-ahead to wash my hair – which has been untouched (well, gingerly brushed) for a record 13 days now.

This is what I looked like after the operation with gauze strips behind my ear for 13 days.

This is what I looked like after the operation with gauze strips behind my ear for 13 days.

I am surprised there were not more things growing out of my head, but it appears not washing you hair doesn’t kill you. It wasn’t even that itchy or too oily – maybe could have passed for a hippy that’s all. Luckily I have been able to work from home, so not too worried about appearance. Poor Ben.

So, anyway, Professor Da Cruz peeled off the remaining gauze strips that were covering it, while Ben took a photo.

I was mildly freaking out because he literally just pulled it off with tweezers, and it felt OH SO WRONG! Because I have not touched that spot for 13 whole days.

I was mildly freaking out because he literally just pulled it off with tweezers, and it felt OH SO WRONG! Because I have not touched that spot for 13 whole days.

I asked to have a look, because the cut apparently went right behind the ear – I was sure that there would be a massive scar… so I was eagerly asking Ben “is it really cool? really big? a bad scar? tell me! tell me!”, and he showed me.

Man, it looks gross, but really, there is NOTHING under those strips. No scar - nothing!

I couldn't believe it. There was barely a mark on me. Just a faint line running down the inside of my ear.

There was NOTHING THERE.

Well, barely anything – just a verrrry faint line right in the corner of my ear.

I have to say Professor Da Cruz is totally the coolest and most awesome surgeon ever. But deep down I do feel like a scar would have been cool. Oh well.

I have to say Professor Da Cruz is totally the coolest and most awesome surgeon ever. But deep down I do feel like a scar would have been cool. Oh well.

I feel CHEATED!!! I wanted a massive scar so that people would ooh and aah, and I would be able to tailor the story accompanying the scar to suit my needs. If it’s someone I want to scare, tell them it’s where I was stabbed in the ghettos of Neutral Bay. If it’s someone I want to impress, tell them I have a computer in my head.

But no. Nothing! Unbelievable.

I said to Professor Da Cruz that it kind of felt like maybe they had tricked me – knocked me out with anaesthetic, laid me on the table, maybe played Celine Dion at high levels through headphones, and then bandaged me up. Literally. It might not have happened. There is no proof! No scar, and no pain. Weeeeeird. Well, my head was a bit red and itchy, but Celine Dion does that.

With Professor Da Cruz, after he checked my head. No scar at all just 13 days after cochlear implant surgery - I am just amazed. I am one happy customer.

With Professor Da Cruz, after he checked my head. No scar at all just 13 days after cochlear implant surgery - I am just amazed. I am one happy customer.

So, everything is on track for the switch-on of the implant, when I get all plugged in to become “Cyborg Kate” in just 9 days.

Professor Da Cruz also checked that the X-ray showed that the Cochlear Implant was in the right spot. If it wasn't we would have had to take it out and do it all again. Gah!

Professor Da Cruz also checked that the X-ray showed that the Cochlear Implant was in the right spot. If it wasn't we would have had to take it out and do it all again. Gah!

So, now it’s only nine days to go until activation. Wish me luck!

Ah dammit.

I can't taste Nori Seaweed anymore! Dammit! It was one of my favourite things.

I can't taste Nori Seaweed anymore! Dammit! It was one of my favourite things.

I was getting peckish while working from home yesterday, and decided to have one of my weirder, healthy snacks – a container filled with pepitas, pine nuts and sunflower seeds, and strips of nori (that is dried seaweed – well, I did say it was one of my weirder snacks).

And lo … I can’t taste them like I used to. In fact, it tastes like I am eating cardboard, particularly the nori.

Sad sad sad.

I wondered – I thought it had all been too good to be true.

I’ve also noticed my tongue is kind of numb, along with the tip of the implanted ear. It’s a bit scary to touch a bit of your ear, and NOT feel anything.

But Nori – my sweet Nori! Perhaps I’ll never taste thy salty sea fronds again! *sigh* excuse me while I go weep over my keyboard.

Am feeling pretty good. A bit tired. My head doesn’t hurt at all, this is the most bizarre thing. I just have this feeling of something being in my ear. I can’t even tell where the implant magnet part is sitting on my skull, because I have been too scared to touch it.

Ben has made me soup, brought me books and magazines. *sigh* Could get used to this.

Ben has made me soup, brought me books and magazines. *sigh* Could get used to this.

Ben has been looking after me. He’s taken two days off work, and has been making me cups of tea, dinner, and bringing me newspapers, making me soup, and he’s currently making me a real hot chocolate. I think I am the luckiest girl in the world.

I am just going to take it slowly over the next few days. I felt so hyper after coming out of the surgery, because I just couldn’t believe how painless it was. But then I started to ache a bit, so took the paracetemol … and now I am feeling really foggy.

And talking feels a bit uncomfortable – like the vibrations of my voice are moving the implant.

Can’t tell you how happy I am to be holed up at home right now.

I’m reading lots of blogs online – there are some amazingly interesting ones out there – and reading the newspaper, and replying to emails. Unfortunately our laptop connection broke, so it meant that I had to sit at the computer to read, and I started to feel a bit funny sitting up.

So Ben has set up the desktop computer in a bizarre balancing act, and I am lying down with the keyboard on my lap, mouse balancing on a book, and looking up at the screen. But I am comfy. My work colleagues would be proud – it is desk contortion-ism at its best. I am always being pulled up for my terrible OHS set up with my desk at work. I find it so comfortable to slump, that I have made my desk at work particularly slump-worthy – with the screen up as high as it can go, so I can just melt into my chair, looking up at my screen like at the cinema when you are way down the front.

Anyway – check out the before and after pics of my head – the red stuff is not blood, just the anti-bacterial orange solution stuff they paint on before the surgery. One of the worst things is I can’t wash my hair until after next Wednesday, and it’s already really stiff with all the stuff they’d painted my head with … yukky. But it’s all totally worth it.

My head, before and after cochlear implant surgery. Not too messy if I do say so myself.

My head, before and after cochlear implant surgery. Not too messy if I do say so myself.

Now it’s only 19 days until I get the implant switched on.

The next count down begins. Phase one out of the way. Bring on Phase Two!