My final post? 7 months on

So, I am thinking this might be my last ever post on this blog.

I have reached the point where there is not really much new stuff to report.

I know it has only been 7 months since I got the implant (7 months! is that all???! Can you believe it?) But already, I think I have reached the peak, and plateaued. The implant will not get any better or different now in my right ear. It has reached its’ ‘zenith’.

And what a zenith that is.

I can hear on the phone now. Very well.

It's goodbye TTY, hello normal phone since I had the implant. However, I keep the TTY on my desk just in case! Can't shake the feeling of needing it there.

So well in fact, that I have had a normal phone installed on my desk at work alongside my trusty TTY phone that I always used when totally deaf.

So, as you can see – the cochlear implant actually did what I dreamt it would do – it allowed me to reconnect with the world on the phone again.

I can also hear a lot better in group conversations and meetings. Where I used to strain to hear someone at the other end of a meeting table, now I can sit back and hear almost every word. That never ceases to amaze me.

The things I still can’t do all that well are:

• hearing lyrics to music (I can hear them better than I could with the hearing aids, but they are still a bit unclear at times)
• watching movies and TV – I still need captions if I am going to really relax and enjoy movies and TV – however, I have been to see Avatar and
  

  I still need to watch TV with captions. Which is why it's so frustrating when they don't have them!

  District 9 without captions, and understood most of it. I can also understand most TV news without captions.

• I still tend to lip-read in noisy environments, but I can hear people a lot better in noise.

So, if I am going to leave anyone with a word of advice, or perhaps a message to the deaf community, or maybe parents considering an implant – having been through this all before, having met so many people who’ve had implants, having talked to ENT surgeons, doctors, audiologists and researched online – it would be this:

Kate’s Final View on Cochlear Implants

Disclaimer, this is only my view, no one elses. You might think it’s completely wrong, yo! If you do, then leave a comment, but make sure its a clever, well-thought out comment. I’ll delete stoopid ones!

• A cochlear implant is not a cure for deafness. It is just like a hearing aid, except it is implanted in your head.
• It does work wonders for some people, and not so well for others, just like hearing aids. To find out whether you are a good candidate, you need to see your cochlear implant specialist. A normal audiologist just won’t cut it – they just don’t know the real facts and figures.
• It appears that people who go deaf later in life are probably going to benefit most. I was one of those, losing hearing over ages 11-19 years.
• It appears that people who are deaf since birth, and get the implant after 5 years old seem to find it harder to adjust – maybe because of crucial years of language development have passed? Not sure.
• From what I have seen, deaf people who get an implant before the age of 5 years old seem to find their cochlear implant more useful.
• Even with an implant, you will always be deaf, and something like 20 per cent of the time you will not be using it (i.e. swimming, shower, in bed, when playing messy sports), so it pays to learn sign language and lip-reading to use with your family and friends.

I am glad I got the implant. I am also glad I waited because it was an emotional ride. But I would do it all again, definitely. If I had a deaf child tomorrow, I would give it a cochlear implant before the age of 4, teach it sign language and show it how to lip-read.

There, getting off my soap-box now.

Here are my final test results for the 6 month test at the Sydney Cochlear Implant Centre – please note the disclaimer my audi asked that I include on my hearing aid result!

These are the test results for my Phonak hearing aid in my right ear: Note: These hearing aids use “Input Compression” or “AGCI” (Automatic Gain Control for inputs). This feature means that the hearing aids vary the amount of amplification according to the loudness of incoming sounds. Soft sounds are amplified more, while loud sounds are amplified less. The complexityof the aids means that they amplify warble sounds used in aided threshold testing differently to running spech. For this reason, aided thresholds measuired with a non-linear aid can only give a general impression about what is audible for complex sounds such as running speech.

This is the test result for my Freedom Cochlear Implant, in my left ear.

My final speech recognition tests were:

Sentences

• 100 per cent for both hearing aid and cochlear implant together
• 100 per cent for just the cochlear implant
• 66 per cent for just my old hearing aid

Words

• 84 per cent for just the cochlear implant (I was zero per cent when I used my hearing aid)
• 20 per cent for just my hearing aid

So, I as you can imagine, I am contemplating getting a second cochlear implant.

But I am going to hold off for a few years, only because the hearing aid balances out the sound of the cochlear implant, and makes everything sound ‘normal’.

So I guess you could say ‘watch this space’ – I may come back with a new blog:

“Kate’s Second And Hopefully Final Cochlear Implant”!

Who knows!

Until then, bye, and thanks for reading!

Kate Locke, signing off! That's it from me - have a great 2010!

 

I won a Human Rights award

Do I look a little nervous? Perhaps! Not every day you have to stand up in front of 400 people to talk for 3 minutes.

Can you imagine my face when they told me I had won? I was in shock.

It was the Australian Human Rights Community Award for an Individual.

It’s a big thing for me, because when you do the sort of stuff I am doing, it’s very lonely work – you think no one notices it. You do it, not for recognition, just for trying to change things for the better.

Plus, I’ve barely won ANYTHING in my life. So this is mega epic for me.

You can actually hear the acceptance speech at the awards ceremony which was held at the Sheraton on Park in Sydney on 10 December 2009.

For all my deaf friends, I have asked them to please put up a transcript for hearing impaired people! And lo and behold, mine is the ONLY one that comes with a transcript. HAHA.

Click on the link below to hear the audio of Human Rights awards speech:

• Read the transcript of Kate Locke’s Human Rights Awards speech
• Hear the audio

 

Looking back: The isolation of deafness and considering suicide

I turned 30 years old this week.

A real milestone for me.

It has caused me to reflect back on my life over the past few years …

I was thinking about how this blog has been exceptionally positive. When I started it in June last year, I actually thought it might be quite sad in tone, or dramatic. It has surprised me how very positive everything has been, how positive I have felt.

I had a very hard time when I was a teenager, and in my early 20s. Many people don’t realise just how difficult deafness can be. It is a hidden disability, an isolating disability, because it is one of communication.

I was in bed a few minutes ago, trying to sleep, but turning all my life events over in my head, thinking about the journey that has brought me here. It’s 4.45am now, and as always I think the best way to cure insomnia is to get up and write about what’s keeping me up! Once I get it out, I’ll sleep well again.

Sometimes I just can’t believe that I considered suicide.

When I was 21, all the difficulties associated with my deafness came to a head, and I decided to kill myself.

I had struggled with university. I didn’t know any other people who were deaf, and I didn’t identify with any deaf people. No one understood what I had been going through. I was too anxious and afraid to tell people how difficult it was.

At that point, closed captioning in Australia wasn’t that widespread, so I was cut off from even little things like watching TV, or hiring VHS’s or going to the cinema. I remember very clearly coming out of a cinema with all my girlfriends, and realising I hadn’t understood most of the movie, and so I couldn’t join in with their conversation afterwards. It was a devastating feeling sitting quietly trying to follow the conversation around me, and not knowing what they were talking about.

I couldn’t afford decent hearing aids. They are so expensive, and being a university student at the time meant I had very little money.

Another issue was uni, where group work and lectures and tutorials were so hard for me to deal with, because I was struggling to hear what was going on. Going into uni every day was stressful like you wouldn’t believe. I remember one tutorial where I was trying my hardest to lip-read everyone – the lecturer, and the students as they made comments. Usually I was silent in these classes, as I wasnt quite sure who was saying what. But one day I really thought I had a relevent and interesting comment to make about a topic we were discussing. So I put my hand up, said my bit, and there was silence. The lecturer looked at me in a funny way, and said: “I just said that.”

I was so embarrassed. I never made another comment or participated in that class again.

These are the awful parts of deafness. It’s a lonely thing to deal with. I wouldn’t wish it on anyone.

It got to the point where I was sure I was going to be dependent on my family for the rest of my life. I mean how could I get any well-paying job being as deaf as I was? How would I ever meet a partner? I didn’t feel like I could relax even in the presence of friends because I was always struggling to hear them, so life was just one big constant source of stress.

I was only happy when alone.

The worst thing was, I knew life hadn’t even really begun. I was 21! I remember thinking: “This is not even the beginning. Life is just going to get harder.”

The way I felt, life was already unbearable… And it was about to get a lot harder.

The night I considered suicide, I remember so clearly.

I’d had a particularly bad night at uni, had a fight with my mum, had almost missed the bus home, had a terrible, awkward conversation with a friend of mine – it was late at night, and as I walked through the darkened Sydney streets towards my house, I said to myself: “That is it. I can’t take it anymore.”

I made the decision then and there that I would kill myself, and that it needed to be that night.

The most enduring memory of that moment is how time suddenly stood still. All I can remember was the sense of calm that came over me. My breathing, my footsteps on the pavement, the bright clear moon high above me, the darkened, damp city streets, the street lights. Everything became acutely clear and still. There was a heavy, calm feeling in my chest, the first time that I had ever felt the jittery feeling leaving my heart and stomach.

That was what frightened me the most. How very calm I was. I was so detached, so rational. It was like a relief.

I realised that this was the biggest decision I had ever made in my life, and there was some strange comfort in having taken control back in my life – I started rationally thinking it through. What were the pros and cons of dying. How would I do it. Was there anything that I thought might improve to stop me from doing it.

I walked and walked the dark streets, and thought long and hard.

As I went through the pros and cons, the thing that caused me to pause was that I didn’t know what happened after death, and therefore, I couldn’t prove that what I was experiencing now would end when I died. If it didn’t end, would I be doomed to be stuck in this eternal moment?

I also knew my mum would be devastated.

Finally I came to a decision. It was a feeling I wanted to end, not my life per se. So I said to myself: “No. Death is not the answer. I will not do it. I will find another way to end this feeling. “

I walked all the way back to the apartment I shared with my mum, in that calm, still, transcendent state. I realised how close I had come. I walked upstairs, sat down at my desk, wrote my mum a letter telling her what I’d planned on doing, and how I had decided not too, but that I would need help. I then went to bed.

I slept, but it wasn’t like any sleep I have had before. I closed my eyes, and lay in one position all night, neatly under the covers, unmoving until the sun came up. It seemed the night was over in a few seconds. I opened my eyes to find my mum standing over me, looking down at me with stillness in her eyes, holding the letter.

She didn’t look upset or anything. And I remember her saying, I will help you. And I got up, we went and had a cup of tea in the kitchen, and talked. And I knew then that everything was going to be alright.

 

Listening to TV on plane flight with cochlear implant

Ben and I flew to Perth last month to attend the Hear For You mentoring program for deaf kids in Western Australia.

It’s a 5 hour flight from Sydney to Perth - I normally hate flying long flights because I can’t hear the announcements (freak out when pilot says anything, think we’re going to crash); can’t watch TV (no captions); can’t listen to the radio (I’m deaf remember); can’t read a newspaper (too big for economy!); and get bored of my book after 3 hours of reading.

So had readied myself for torture.

I am a nervous flyer. All the captain has to do is murmur "It's a beautiful day outside, and we're 20 minutes from Sydney." and because I can never quite hear clearly what the announcements say, I'll freak out, thinking "What did he say?? Did he say we are going to crash??!! Oh my god, we're all going to die!" And then wonder why everyone else starts reading the newspaper and ordering beer. Delightful.

We were flying Virgin Blue which is budget, so you have to pay to watch TV if you want it. After we settled in, and took off, they made an announcement that the credit card payment machines attached to the back of the headrests were broken, so they were going to give everyone free TV for the whole flight.

Everyone whooped and cheered, except me, because I thought I wasn’t going to be able to hear anything, so would be left out yet again.

But then I thought, geez, if it’s 5 hours of free TV and movies, I’m going to have a go. I’ll just watch the pictures if I have to – that will be better than just being bored out of my mind.

I held up the headphones to my hearing aid and cochlear implant and tried to follow the TV – I could hear it, but it was so static-ey and unclear, it was really disappointing. On a whim, I decided to try the ‘t-switch’ on both hearing aid and cochlear implant, which shuts out all the background noise, and only picks up the radio signals coming from TV. You have to have special headphones for that, so I didn’t think the Virgin ones would work.

But surprise! They had an operational telecoil built in! No notification anywhere, those stupid dolts. It turned out even Virgin Blue themselves didn’t know their flipping ear phones were built in with telecoil adaptability. Pathetic.

Holding the ear bud up to my ear, suddenly I could hear the audio quite clearly! I turned to Ben going “I can hear it! I can hear it!”

Wrapping my scraf around my head I managed to get the ear bud close enough to the cochlear implant microphone to be able to hear the audio for the TV/movies on the Virgin Blue flight. I sat like this for 5 hours from Perth to Sydney.

Small obstacle was the fact that the headphones provided were ear-bud types. Now that is difficult for cochlear implantees, since the microphone for picking up sound is behind your ear, not in it!

Ben said: “Why don’t you try sticking it to your microphone?” and I’m like “With what??”

In the end we wrapped a scarf around my head, and I sat like that for the whole 5 hours, and was able to watch TV and hear it perfectly.

 

It’s been 4.5 months now

So it’s been four and a half months now since I got the cochlear implant in my right ear.

I haven’t written an update in a while, because I haven’t felt like there is anything interesting to report!

But I guess what I think of as being boring, my family and friends might find interesting.

So, here we go.

Since I last wrote, I am hearing so much better than before – in fact, my last sentence and word perception test had these results:

• sentences – 100 per cent
• words – 87 per cent
• sentences in noise – 95 per cent

So… yes. It is amazing. I am still profoundly deaf when I take off my cochlear implant and hearing aid, but now I can actually hear stuff when I have them on.

I’ve been having conversations with Ben without facing him, so it looks like I can definitely hear some people without lip-reading.

I have also been still using the web captel trial put on by ACE.  This means I’ve been able to practice using the telephone calling normally, and still listen and hear what people are saying.

And I am pleased to say that I can hear most of what people say on the phone now, without captions. Amazing. People have no idea that they are speaking to a deaf person on the phone.

When I call Ben or mum, I don’t use captions at all. Ben always whines now when I call – “Why do you have to call me all the time now!?” HAHA! He liked it better when I just texted. Now I am calling up to say things like: ” I am walking down the street! What do you think of that! I am passing a garbage bin. What are you doing? Look, a bird!”

And as for other news, I have been elected to the board of ACCAN, which is the Australian Communication Consumer Action Network – this will mean that I can really make it known what deaf people, or those with other disabilities will need in order to stay connected in Australia. For example, people don’t realise that for the Web CapTel trial to work, it is important that you have a stable internet connection that doesn’t drop out. If it drops out you may be logged out or your captions will stop coming through and you will have to reconnect. Imagine having to do that during an important phone call!

I’ve also been nominated and shortlisted for a 2009 Australian Human Rights Community Award for work with deafness and disability in Australia. WOWSER! Doubt I will win (you should see the actual shortlist! amazing people), but it’s still a hugely great honour to be shortlisted!

As for other stuff happening with the cochlear implant – I was over at my friend Georgia’s house the other week, having an ‘infrared sauna’. She runs a natural therapies studio. She gave me a pamphlet to read in the sauna so I could see all the good stuff it was doing. At the very back in tiny letters it said: “Do not use this sauna if you have an implant i.e. pace maker or silicon.”

And I was like “WHAAAAAAAAT!!!!!??” slapped my hand over my ear, and jumped out – thought maybe my head was going to explode! I mean, I didnt have the external bit on, but I thought maybe it might melt my brain, make it come out my ears, and turn me into a zombie.

It didn’t however (that might have been kind of cool), and I checked with Cochlear Ltd later – they said that according to their information from engineers etc, infrared shouldn’t affect cochlear implants (nor should any other sauna – good to know!).

Yay for cochlear implants. Such a new invention, it’s like being the first person to walk on the moon or something. You just don’t know what might happen when you do stuff that is considered normal! like brains exploding from saunas. Awesome.

 

Is a cochlear implant really that good?

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.”

 

Using the telephone with a cochlear implant

This is an interesting one.

Since my last post, I have been trying the phone more and more, and find that I can’t always hear what people are saying really clearly. No matter what program on the implant I use, it’s not always clear. Some days I can hear, other days I can’t. Some people I can hear, other people I can’t. All very inconsistent.

But I have discovered something really cool.

The first ever captioned telephony trial is taking place in Australia right now, it started last week, and 100 people from around Australia were selected to take part after registering.

I am one of them, and I have taken part in the ‘Web Captel’ trial a couple of times in the last couple of days.

Using webcaptel is so much better than the old TTY phone system. You can hear and speak normally with the person on the other end, and read what they say as captions on your computer screen. Awesome.

Basically, the way it works is you must have a computer in front of you connected to the internet, and a telephone, either mobile or landline.

I’ll tell you how I called my bank the other day:

I visted the website url they gave me, and logged in (you must have a username and password).

Then I simply typed in the phone number of the phone that was sitting next to me, and then the phone number of the bank I wanted to call.

Pressed enter…

Suddenly, my phone rang.

I picked it up – there was no one at the other end, but all of a sudden, the website page I had open popped up a text pane, and the relay officer in Brisbane started typing: “Calling number as requested… Ringing…”, and then, listening to my phone, I could hear the ringing sounds at the other end.

“Hello?” I said uncertainly.

“Hello, this is the bank, how can we help today?”

And the words of the other person suddenly came up on the screen in front of me as I listened to her – word for word.

I squealed with delight!

“I want help with my homeloan please! Eeeeeee!”

“Yes sure… Account number please, and your [brsghsghgh behjhjee and jsjkdksj].”

Suddenly I had missed something she said, so I waited half a second, and it soon appeared on my computer:

Yes sure, account number please, and your password and name as it appears on the account.

Dang! This thing, it worked! I gave her the answer, and then I just couldn’t contain myself:

“Miss, this is the coolest thing ever, did you know you are talking to a profoundly deaf person, and everything you are saying is appearing in front of me in text on my computer? It’s called WebCaptel and it is soooo cool!”

She said, “Um… what? webcaptel? I’m on your computer? uh… that’s .. ” then she laughed, “that’s great! … yes, wonderful! …”

And I could hear the smile in her voice. You can’t hear smiles with the normal Tele-Text Typewriter phones that the deaf use (the ones I normally use…) because you can’t hear anything, it’s only text you read, and it’s like a two-way radio.

So this new Web Captel service, I predict, will completely change the way deaf people use the telephone, and therefore communicate.

It’s also brilliant for practicing listening with my cochlear implant.

If you are interested in reading more about captioned telephony in Australia, visit the ACE website, or have a read of the ACE Web Captel user guide.

Today it feels good to be deaf in 2009.

 

Senate inquiry into hearing health launched in Australia

This is an important shout-out to all my Australian readers with a hearing loss.

The Australian Federal Government has launched a full Senate Inquiry into deafness!

Is there anything about having a hearing loss or being deaf that frustrates you?

• Have you ever felt annoyed at the cost of buying – and maintaining – hearing aids and cochlear implants?
• Have you ever been upset by the low standard of services of an audiologist?
• Ever wished you could stay with Australian Hearing after you were 21 years old?

The Australian Federal Government want to hear from EVERYONE in Australia about what issues they face when they have to deal with a hearing loss.

They are planning on using your input to change the way hearing health is dealt with in Australia.

It is so important that you email them to let them know what it is like for YOU personally.

All you have to do is send a short email to community.affairs.sen@aph.gov.au by 9 October 2009, letting them know what frustrates you most about your hearing loss in Australia, and what you would like to change.

I have done one already. If you need help in knowing what to write, have a look here.

http://katelocke.wordpress.com/2009/10/01/submission-australian-senate-inquiry-hearing-health/

This is your chance to finally let your Government know how difficult it can be living with a hearing loss in a hearing world.

Don’t miss this chance.

 

My submission to the Australian Senate Inquiry into Hearing Health

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

 

5.5 weeks since switch on – some photos

Thought I would post some pictures that I have been taking along this journey.

These ones are from the very first moment Ben set me up to listen to an audio book. It was a wonderful moment! I hadn’t done this since before my hearing  became so bad when I was about  15 years old.

Kate’s Totally Awesome Personal Audio Book Party

Ben hooked me up to the iRiver to listen to the audio book. Here is saying to me, "Can you work out where you are in the book?" And I am trying to listen to see if I can pick up where in the book the audio has started.

Nearly there - what is that word? It sounds like "Chronoguards", but what the hell is a "chronoguard"?? Surely there is no such thing, and I am just not hearing it properly?

Oh my god it IS the chronoguards! I can hear the damn thing!!! OMG it's a miracle! I found where I am on the page!!! Wheeeee!

 

 

One happy little vegemite, posing with the first ever audio book that she's listened to since becoming profoundly deaf a decade ago!

 

 

Experiencing rain for the first time with the implant

And that is not all – here I have a photograph of me listening to rain for the very first time with the cochlear implant while we were having a mini-break in the Kangaroo Valley in NSW, Australia.

I said to Ben: "What's that noise?" And he said "Rain."

"Oh man!!! Rain!! I can hear it!" The first time I heard rain through the cochlear implant it sounded like the tippy top three notes trilling on an electric piano. Totally bizarre, musical and beautiful. he he he!!! I am soooo lucky!

 

And now, how about two totally unrelated pics – both of Ben – when he came home after managing to buy a whole wheel of French ‘Munster’ cheese for only AUD$5. They usually cost $90-$100, and are difficult to find in Sydney. Yes, what a bargain. He went completely nuts when he brought them home.

Ben showing that there is more than one use for a wheel of cheese.

Ben showing extreme happiness in finding a rare cheese for 5 bucks. Can't you just see imagine the squeal he is making! "Eeeeeeee! Cheeeeeeese! And it's allllll miiiiiiine!"

 

Day 4: I am getting used to the robots!

It has been three full days since I got the cochlear implant switched on, and boy, is it amazing.

Let me tell you things I have been hearing.

Ben and I decided to go to Kangaroo Valley for two days, to get away from it all, and give me a tranquil rural atmosphere in order to get used to the sound of the implant.

I realised that the drive up was going to be the first time I would be able to experience what music was going to sound like. We have quite a good stereo in the car, and we had a good two hours to go through all the archives.

What a drive.

I had mentally prepared myself for the horror of music. Blips and pings replacing beautiful harmonies that I remember from my childhood before I lost all my hearing.

But it was totally, mega, awesome, cool, futuristic, and the sounds in my head were like the feeling you get after drinking a big cold glass of water on a really hot day – like hearing those sounds was quenching this huge thirst in my ears - the thirst to hear the sounds I had been missing for so long.

It was electronic.

The best way to describe it is as if a synthesiser is playing all your favourite songs.

One of my favourite bands, Cut Copy, sounds GREAT. And of course, Daft Punk sounds flipping awesome too.

Then I listened to my favourite song of all time, kind of my ‘coming of age’ song, which I used to listen to at age 16: Portishead’s “Glory Box” …

And I could hear the voice of the lead singer, Beth Gibbons. Even though I couldn’t understand all of what she said, I could make out some of the words – and I would say to Ben “did she just sing ‘a thousand flowers’ something something????” And he cried “Yes!! She did!” These were words that I had never really heard before (this was the song I had to get my school friends to write out the lyrics for me, so I could sing along to it, even though I couldn’t hear what she was singing.)

I was just so happy. I couldn’t believe it.

So, as we drove I tried to focus entirely on the sound of the music in the implanted ear. The harmony and rhythm of all the different songs sounded like aliens playing electronic keyboards with two fingers at the speed of light.

Weird. But not when you think about how a sound is produced in the cochlear implant.

The implant  and the processor extracts noise and sounds from the environment around you, and then converts it into electrical digital signals, and transmits them to the electrodes in my inner ear. My nerve endings get stimulated electronically, and then send the signals to my brain, telling me its a sound.

Here is a perfect example:

Imagine the sound made by a flute, or maybe a violin. One long continuous note can be emitted, and you’ll hear it like that.

With the implant, sound is more like an individual piano key being played at an extremely fast rate in sequence - so fast, that it sounds like one long, smooth note, because they are played so rapidly.

This means that the sounds are different to me when I hear an old favourite song, but I can recognise it.

This is what makes it so amazing. As another song came on, I said to Ben: “I can hear that this is ‘Saturday’ by Cut Copy playing, but what is that whacky rhythm and melody playing in the background?”

I have never heard that melody of notes before! So even though it sounded very electronic, it was like my eyes were being opened to a tune I hadn’t been able to hear before. It was so worth it.

Then, huge moment … for two hours we’d been listening to music, and it was playing a song I didn’t recognise, but then suddenly, I definitely heard the words “1, 2, 3, 4″, and I turned to Ben, repeating what I thought I had heard: ”Ben??? 1234????”

And he looked at me astounded, and yelped “Yes! But you don’t even know this song?”

Oh my god, we were just looking at each other so happy. Then I asked him what the song was. It was apparently ‘The Number Song’ by Cut Chemist. HAHAHAHAHA

The lyrics throughout the song are ”1234″ all the way through. hahaha!

But I had no idea … I HEARD IT!!!! I REALLY HEARD IT!

OK, so there were other lyrics in that same song that I hadn’t heard, but the fact that I could pick up those particular numbers that I would never normally have heard before just blew us away.

I just hope it will continue to improve… I wanted to include a very interesting analogy by Professor Jennie Brand-Miller, who has been mentoring me through this experience (she has TWO cochlear implants!), and she described the every day learning to hear with an implant below:

Think of your auditory pathways as like a gravel road at the moment … cars can’t go fast on them, electrical signals can’t whizz up them.

But everyday, the workmen are laying down the foundations of a super highway, smooth and capable of cars going 250 kms an hour.  It takes time to  do this … weeks, months and even a couple of years … but you’ll notice the difference … week by week, there’ll be a detectable difference.  You’ll enjoy the journey, no matter what the speed.

Amazingly well described. Thanks Jennie. 

And I believe it.

I am so excited!

 

Switched-on. What does it sound like?

I bet you are wondering what it’s like!

One word.

Bizarre.

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.

“..Ooooooooooh…”

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!

Bang!

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.

 

Tomorrow is the big day!

Tomorrow at 11.30am I get switched-on.

I have been waiting for this moment, not just since the surgery 3 weeks ago, but for about 10 years.

I first knew I was a candidate for a cochlear implant when I was about 17 or 18 years old. I always thought to myself  “one day I will get it, but not now”. It was too scary a thought back then.

As the years progressed, and my hearing worsened, I always thought, “if worst comes to worst, and it gets unbearable, I can get an implant”. It was always this distant, frightening aspect of the future – a moment when my hearing loss would get the better of me, and I would ‘succumb’.

In fact, it hasn’t really been like that. I probably could have continued on the way I have been – with hearing aids doing very little! Because I lip-read, I can ‘get by’. But who wants to spent their lives just ‘getting by’!?

Some people might say, why did you wait so long?

Well, if you were the one talking to all the doctors and audiologists about the pros and cons, you would wait too! It is not simple. It is not easy. It requires a lot of planning, there are so many potential risks, you need to have a supportive network of people around you, and unless you have private health insurance like I did, it costs a hell of a lot. It also requires a certain amount of faith in yourself, because it’s also a lot about the way you think that affects the success of the implant.

So, you can see why tomorrow is so huge for me.

All the different people I have spoken to that have implants have all had such amazing and different experiences.

I think the 4 main hopes I have for my cochlear implant would be:

1. I’d love to be able to hear and understand the voices of my little nieces and nephew. They are all under the age of 5, and they are so hard for me to hear. I want to hear when they ask me stuff, and make comments on things
2. I want to be able to play the piano again – I had to stop when I was 18 because I couldn’t hear the differences between the notes anymore. That was devastating, so I stopped playing. I’d be so happy if I could play again.
3. I ‘d love to be able to hear the voices on the radio when I’m in the car, and hear the lyrics to my favourite music. Maybe even watch a movie at the cinema.
4. And most of all, I’d like to be able to call my mum, and tell her I love her, without having to have someone standing next to me telling me what she’s saying.

If anyone of these things was made possible by an implant, then I will be happy.

But either way, I think that tomorrow will be up there with the other big life moments I’ve had that get mentally added to  “The Grand and Unabridged Compendium of the Historical Moments of Kate Locke’s Life”.

2009′s entry will say something like “Cochlear implant happened, and it was good/bad/awesome/stupid/changed my life/ruined my life/made me grow wings/caused nuclear war/saved the planet (select correct corresponding descriptive term).”

Who knows what the future will bring?

Let’s hope not nuclear war!

To my family in New Zealand, South America, Brisbane and Melbourne – I will post all about the switch on tomorrow night! Wish me luck! And maybe one day I might even be able to call you on the phone.

 

The things I miss

Have you ever wondered how deaf people listen to music or watch movies or TV?

To understand what they are hearing, they usually need captions.

I used to be able to hear normally… and one of the things I really miss is being able to hear the lyrics to music.

I can hear some music quite well with my one remaining ear – jazz, alt rock, folk. Other music of course sounds horrific (mainly violins/classical, and heavy metal).

Unfortunately, daggy pop-music sounds quite good to my ear – which means Britney Spears, Katy Perry, that Swedish band that sang ‘Barbie Girl’…

However, as a deaf person, I can’t hear lyrics, so, unless I ask someone, I have no idea what they are singing about.

I have a very clear memory of when I was about 17, driving to Newcastle with my mum. She always let me play the music I liked (what a mum!!!), and there was this song I loved called “Remember me” by Blue Boy. I used to sing along with it, because I thought that the words were “meh meh mehmeh- mehmehmeh meh meh meh”

I finally asked mum whether they were actually saying anything, and I remember her saying “Well, let me see…” and she rewound the tape, and went through the entire song, listening, and sang me all the words, so I could lip-read them.

Thinking back – what a wonderful wonderful thing my mum did for me. All the more so because the words are SO STUPID AND ATROCIOUS!

See lyrics below!!!

Remember Me, by Blue Boy, 1997
Chorus:
Remember me, I’m the one who had your babies.

***YES, WHAT YOU ARE READING IS CORRECT: This is the only line in this song!!! It is repeated several times.

I actually preferred the song my way, with all it’s “meh meh meh”s

If you are interested, check out the video clip. This is still one of my all time favourite songs. I wonder if it’s because I can hear the beat so well. I can hear the singer’s voice still, but like I said, it just sounds muffled.

Check it out:

This is a YouTube music video of one of my favourite songs - "Remember Me" by Blue Boy - I never realised how stupid the lyrics were, until I got my mum to sing them to me. Click here to open YouTube and watch it. You will need sound.

Now, one other thing you might find interesting – there is a blog out there by a guy in America that is dedicated to captioning all videos online to deaf people like me.

For the first time ever I was able to watch a Britney Spears video with captioning, so I could understand the lyrics. I mean, most of the time I can lip-read Britney. And boy. Does she pronounce her “L’s”!! She sings like she is licking something… Which kind of captures what the whole Britney brand is all about.

But anyway, after watching these captions, I have lost all respect for Britney’s songs. Now I understand why people hate her. She just sounds really stupid!

But hey. Her tunes are good. Pity she doesn’t make up the tunes. HAHA

Check out Britney’s captioned video below!

Hilarious captioned version of "Oops. I did it again" by Britney Spears. Every music video should be captioned, because then maybe stupid lyrics would never be released!

I salute Bill Creswell, hero to deaf people, bane of brainless musicians, for Captioning the internet, one video at a time.

 

How long until I hear again?

People have been asking me how long it is until I hear again; whether I will actually have to wear something external to ‘hear’, or if its all internal; and if it will be like completely normal sound.

Well, in answer to those questions – the implant will be activated in 14 days, so in the implanted ear, I currently hear absolutely nothing. But I am doing okay on my other ear that still has the hearing aid, I am hearing about 20 per cent of words that people are saying, but understanding about 80 per cent of sentences. (When I want to. If Ben is annoying me, I can understand 5 to 7 per cent of what he says. Isn’t the brain an interesting thing?)

Here is a scanning electron micrograph of a normal hair cell region (called the organ of Corti)

It is quite freaky, because with my implanted ear, I used to be able to hear some very loud noises such as trucks and buses, or someone clapping or shouting right next to my head, unaided. But now, the insertion of the electrodes into my cochlea has destroyed all the remaining hair cells that would have detected those sounds for me. And now it is like my head is like wood.

Check out this incredible picture of cochlea hair cells. I am not sure whether these are animal hair cells or human - if you want to read more, check out this great article:  ‘Hair Cell Regeneration as a Therapy for Deafness‘ by Shelley Batts, a Neuroscience PhD candidate at the University of Michigan.

Of course hair cell regeneration is a good couple of decades away, so not an option for me.

Second query – I will definitely have to wear something externally in order to be able to hear. A cochlear implant comes in two parts – an internal, and an external part. So, yup, I will have to wear a magnet and wires on my head if I want to be able to hear out of that ear – hence all the robot jokes people keeping making … See what an implant looks like here.

And finally, the million dollar question… will I be able to hear like a normal person?

Well, the short answer is no.

Imagine your inner ear – it has thousands of tiny hair cells, the things that send the sound to the nerves of your ear. Each hair cell stimulates a part of the nerve, giving you a different sound.

The cochlear implant seeks to ‘replace’ those hair cells – and it only has the equivalent of 22 hair cells – or rather 22 electrodes that stimulate your nerves via the computer in your head. (robot! robot! robot! ok that’s enough)

Also – the human cochea is so tiny, that when the cochlear implant is inserted, it can’t reach all the way into it – it only reaches into the section of the ear where the high pitched nerves are…

My face at switch-on? Gaaah! What am I getting myself into!

So this means that every sound your microphone picks up around you will be translated into this new high-pitched, supersonic, electronic, robotic, ’22 electrode’ tone. You don’t hear low pitched sounds.

My god, you can see why I have waited so long before I do this! It is going to sound like robots, darth vader, electronica, screaming cats, El Horiffico!

And the SCIC pamphlet says: “Don’t worry about how awful the sounds are at first. You’ll get used to them.”

Like Rudd telling us the stimulus package has worked – how very, very reassuring!

In short – if I were to calculate how long it would take me before I am hearing quite well out of my implanted ear. I would say …. by Christmas? That’s almost 5 months of hearing rehab. Cool. I sound like Amy Winehouse (mum, she’s a jazz/blues singer that’s on drugs and sings about it – way cool. Love kate).

 

How much did the cochlear implant cost me?

Cochlear implants are expensive.

In Australia, they cost almost AUD$25,000-$30,000. And that’s just for the surgery and implant, not for the rehabilitation and software ‘mapping’.

Luckily, I had private health insurance, which meant the entire amount was covered, except for one payment of AUD$250 night in hospital as excess. I was also really lucky that my doctor and my anaesthetist didn’t charge me the regular ‘gap’, which can be a couple a thousand dollars (thanks guys – you really made my day).

But if I hadn’t had private health insurance I would have had to pay the full amount, or go on the waiting list at the Sydney Cochlear Implant Centre (SCIC).

SCIC receives VERY limited funding from the NSW Health Department for a limited number of cochlear implants for public patients – something like 44 a year.

And considering that 1 in 6 people in Australia have some degree of hearing loss, that numbers seems extremely, pitifully small!

Anthony Roberts wants the Government to support the Sydney Cochlear Implant Centre.

If you are interested, read a request by Liberal member Mr ANTHONY ROBERTS (Lane Cove), Legislative Assembly, 5 March 2009 for more funding for the cochlear implant centre from the government – and then skip to the bottom of this very moving speech, and see how many voted NO! I couldn’t believe it. Shame on them.

Jillian Skinner has been a very vocal supporter of cochlear implants, and good on her. Read a short article here about the lack of funding given

Jillian Skinner, Shadow Minister for Health, and Deputy Leader of the Opposition, is a supporter of the SCIC.

by the current state government.

 In America cochlear implants cost up to US$40,000, and I am not sure that they are covered by any sort of national medical scheme. Being deaf in America would suck.

But get this – and this is the thing that annoys me most.

So I get a cochlear implant for $25,000, and it cost me $250. It is regarded as a prosthesis.

My hearing aids cost me AUD$4,000 … each. And they are regarded by the government as a luxury item.

So, my private health fund gives me back … AUD$600 all up for those hearing aids, and then tell me I can’t get new ones again for several years, even if they break, or I lose them, so I can ‘re-earn’ my health fund points. Hearing aids last up to 5 years.

So hearing aids were more expensive for me to get – costing AUD$7,400, plus batteries, plus audiology appointments, than a cochlear implant.

It is actually cheaper for the people of Australia to get cochlear implants, whether they need them or not – but only if they win the ridiculous race that the current government makes us run – to be one of only 44 people in Australia that will be helped financially to hear again. And 1 in 6 people in Australia have some form of hearing loss. Check out the Access Economics ‘Listen Hear’ report for that figure.

It is ridiculous, but Australia’s hearing health system is operating on an antiquated model – nothing has changed much since they developed the system in the 1940s, following the world wars, and providing for the many new ‘noise-deafened’ veterans.

In fact – it is cheaper for me to buy a return ticket to the UK, stay in London for a week, chilling out, and get a pair of hearing aids free through the UK’s National Health Service, and then fly home – cheaper than buying them here in Australia.

Something is wrong with this model. And the Labor government is in charge of it. And they are doing nothing about it.

I know because I have been to see the Minister in charge of this portfolio, not once, not twice, not three times, but I have been about 5 times to tell them that their hearing health set up is not working, and is not fair.

*sigh*

One day it will change, but only because people like me – the ones who actually use the technology, and need it - make a racket about it.

 

Some more photos pre- and post-op

I decided to post some more photos of Ben and me pre and post surgery.

Getting ready for me to go into surgery. A bit nerve-wracking.

My actual sugery apparently only took 1 hour, though I was ‘inside’ for four hours. I don’t remember waiting around that long.

If you look closely, you can see the sticky post it note that accompanied my file: "Patient is deaf". I still find it weird to be described like that.

And here is Ben’s last view of me as I am taken in. I was definitely feeling scared as they wheeled me out, but tried to think positive thoughts – e.g: “Anaesthetist promised I wouldn’t die!” Stuff like that.

Being wheeled out of the pre-op ward, and into surgery

After I got out, and had recovered (to read more about the surgery, click here) - the next morning, Dr Da Cruz came and told me it was time to take off the bandage. I was like “What the …? Now? Don’t I keep it on for like a week or something?” He explained that I didn’t need the bandage, I could keep it off, and just have the gauze covering the wound. So, you can see I am mildly freaking out as he takes it off below:

The bandage comes off in the morning, and I don't really feel comfortable without it!

So, what did I do? When I got home, I asked Ben to wrap another bandage around my head! HAHA!

At home after I made Ben bandage me back up. Thanks Ben

I just couldn’t bring myself to lie down on our couch at home, and let my ear/head touch the pillow. I kept imagining germs and bacteria getting in there. Gah! Yuk!

I mean, deep down, I knew that he was right, the wound was sealed enough with the gauze, but I decided to placate the worry-wart in me, and give myself a bandage for the day – just to make myself feel better.

So, I haven’t been able to wash my hair, and I haven’t been sleeping on my head on that side – but it doesn’t really hurt. It”s more that fear you have of hurting yourself!

And then flowers arrived from my girlfriends – thanks guys!

First day back at home, and the door bell rang, and I got a delivery of flowers from my girlfriends.

So, it’s day 5 after the surgery, and I’ve been up since 4am this morning, as I couldn’t sleep. My neck is hurting a bit, and I can really feel the computer chip thing sitting on my skull now – that is kind of freaky. I didn’t think I’d be so aware of it. Well actually, that’s not entirely true – I can feel it, but I can’t actually tell where it’s sitting.

Ben keeps telling me we should test it by dangling some metal over my head, and seeing if it sticks to my head.

Not funny.

I told him no way, I don’t even want to touch it until I see Dr Da Cruz in a week.

But still he keeps jangling his keys suggestively at my head in the hope that I’ll give it a go, see if the keys stick to my head. Am not quite ready to ‘test’ my magnet yet, and am not even sure it would work – wouldn’t you need another magnet to make it stick? I have no idea, and am not going to experiment!

I may be Robo-Kate, but I am still a scaredy cat.

17 days to go until the switch-on.

 

The highs of being a mentor to deaf teenagers

So, I mentor deaf kids between the ages of 12 and 18. We’ve been doing this for about a year, me and 5 other deaf friends. We started it because we had always wished that we had a deaf role model when we were growing up – or atleast someone to talk to when the going got tough, or to ask for advice as to how to deal with things when you have a hearing loss. There weren’t really many around for us.

Hear For You provides a mentoring program which gives guidance and support to deaf adolescents at an important stage of their lives.

We all do it as volunteers, we conduct workshops on weekends, and talk to our mentees by email – and I have to say it is one of the most satisfying things I’ve ever done.  We call ourselves ‘Hear For You’.

So, on the morning after my surgery, I am sitting up in my hospital bed, checking my sms’s and emails.

And in pops an email from one of my mentees. I mentor the year 11 and 12s, and they are such a wonderful group of kids. I really love them. And I can  see myself reflected in them so clearly – everything that I went through in highschool – I always just want them to know that they are not alone, and can do anything they want.  We are always on about how deafness is not a disabilty, but a difference, and that they can be leaders, and have brilliant careers etc etc.

So, anyway – this email comes in … and it says something like: “HI Kate, just wanted to let you know … I got elected to be a prefect at my school yesterday.”

WOW.

I was completely floored.

Had a huge smile on my face.

Didn’t know what to say.

Well actually, I did know what to say! I was hooting and cheering, and if I’d been hooked up to a heart monitor, alarms would’ve been going off.

He is profoundly deaf, and has been elected prefect at a normal mainstream school.

His parent’s had mentioned that he had decided to go for the position of prefect at his school after coming to our workshops (we hold four every 6 months), but I don’t think I realised he was really going to do it.

The grin got bigger, and I thought – this is what it’s all about. This … giving the kids enough confidence to know … they literally can do ANYTHING. It was a small sign – well, a big sign – that what we are doing is making a difference, is helping these kids feel more confident about themselves, and pushing them to challenge themselves.

So, congratulations Adrian! You are my hero, and I am very proud of you. Just remember this is step one of the journey. Keep going til you hit CEO, just like we talked about! And remember it doesn’t end there!

Whoot!

 

Surgery ETA 6 hours

ok, so this is probably the last post I will make before the surgery. The last post. It’s like I am leaving for war or something.

“…Darling … I may never return … but if I don’t, you must keep the farm, and tell the children I died fighting for their freedom!” *cue soaring music, camera cuts away to show me heading off into the sunset, Ak47 over my shoulder to fight the (insert enemy name here: Nazis/Russians/Communists/Fascists/Aussie liberals Godwin Grech & Turnbull)*

I am a bit nervous. I have had to start fasting from 23 minutes ago at 9am.

Also, am wondering what I have gotten myself into. A friend of mine that works for ABC’s Triple J thought it might be interesting to do a story on the experience of the implant for the radio. I thought, yes, awesome, it will be a good way to educate people on what it’s really like, especially since I am a big fan of music, and music will irrevocably change forever after this for me – and I laughingly suggested that they could try and get some audio sound effects from the theatre during my surgery. ha. ha.

And what have I learnt from this? Don’t joke with the ABC.

They are apparently at the hospital now trying to secure an interview with my surgeon, and then want to have a sound person in the theatre during my surgery so they can record the ‘sound effects’ (i.e. Drilling, cutting , the surgeon saying “Woops, shouldn’t have cut that bit. Just stitch it back up, no one will notice!”)

If they can manage it – I think it may be a first. Cochlear implant surgery broadcast over national radio. Who’d a thunk it?

At least it will capture if I talk in my ‘sleep’ under anaesthetic. I’ve always wondered if that happened.

 

How do you know when you are ready for an implant?

Knowing when you are ready is a difficult question – because the outcome can be so varied, it is really difficult to apply one methodology for selecting a candidate to all possible candidates.

The audiologists can give you hearing tests, but they are not the key indicators as to whether or not a person will benefit.

I have met people with positive and negative experiences of implants, but all of them seemed to agree that, mentally, you need to be prepared… because it is tough. It apparently seems to be better to have had some degree of hearing before…

Babies get implants too! And apparently you benefit more the earlier you have it done - because you grow up used to that sound.

And children implanted at a very young age seem to benefit the most! (from what I have read, and been told). Can you imagine a little baby going through what I am about to go through? I can’t imagine how parent’s must feel. Well, I guess I could imagine a little bit, actually! Fear for the pain your baby might have to endure with the operation, but then hope and happiness that they will be able to hear!

I am glad I am going through the Sydney Cochlear Implant Centre (SCIC), because they have dealt with hundreds of people getting implants since the 80s. So they have really had the experience of seeing which implants worked with which people…The SCIC were the ones that initially said to me: “You are not deaf enough to benefit from the implant yet” , and then again, said it every year, even when other private clinics were saying “go for it” (those private clinics probably stood to benefit financially from me getting an implant).

The speech perception tests the audiologists do to tell if you are ready for an implant are always interesting – this is where you sit facing a big speaker in a sealed audiology room. You wear your hearing aids, and repeat back a list of sentences and words you hear.

I just get such a shock from these tests, every time, because it always reveals to me how deaf I am, and how much I rely on lip-reading in day to day life.

I mean, most of the time I, and others around me, forget I am deaf. To give you an example – I can usually hold a normal conversation with someone in a quiet room, ‘hearing’ everything that is said (unless they mutter a lot, have a teensy-tiny voice, or have an incredibly strong accent!). But if you told me to turn away from that person, or if they held a hand up in front of their mouths… I would be stumped.

In the Audio workstation you can see the speaker in the corner, which you sit right up close to, and listen. The room is padded all over with carpet, and is so quiet, I can feel my brain squeak. If that is possible.

Crazy, it amazes me every time I do the test. I sit there, staring at this black speaker in this quiet, quiet room. And try to repeat back what I hear. Usually I can pick up one or two words, and then that means I guess the sentences…this always gives me kind of a fake score – like “oh you can hear 40 per cent of sentences”, when I am actually only picking up 5 per cent, and guessing the rest!

This time the audiologist used the word test – where a list of words are said, in no particular order … so you have no context in which to put it – making it a lot harder than a sentence recognition test.

Picture this – the Audiologist says to me: “OK, just relax, and repeat back to me exactly what you hear.”
Me: “Ok…. ” [list reading starts through the speakers] “…um …. Mmpff …. rdmmpff, or could be mmmmpghhg…. um, mmmppph. Perhaps mooommm?”
Audiologist: “Hmmmm… sounds like your hearing might have dropped a bit since the last time you were here.”

And “ding ding ding!!!” I am finally a candidate for an implant!

Well of course it isn’t quite as simple as that – I had had a barrage of other tests when I was younger, but what we were really waiting for was for my hearing to get worse.  As my friend Abigail says – it was one of those bizarre situations where you are actually happy to fail a test.

I guess, the moment I knew I needed to get an implant was when I realised that my boss Penny, having come back from a 5 week trip overseas, hadn’t just relaxed so much,  that she was talking quieter. hahaha

So, yeah, I am ready. bring it on.

 

Who am I, and why this blog?

It is 3.20am in Sydney, Australia, and I am awake! Why you may ask?

I can’t sleep because, in 5 days, I am getting my first cochlear implant.

I have waited over 10 years for this moment.

I am profoundly deaf, but it wasn’t always this way. I grew up with normal hearing, until I had a hearing test at 11 years old. They discovered I had a mild to moderate hearing loss that had gone unnoticed for a few years. What a shock! I had always wondered why I didn’t like talking on the phone as much as other people – or why my friends always told me when my name was called in school assembly.

It was because I was struggling to hear! Unfortunately for me, the news was not good – the doctors had no idea what caused my deafness, and they predicted it was degenerative, and would worsen over the years. So began my journey into deafness.

By the age of 18 I was wearing hearing aids all the time, and by 24 I had to stop using the phone altogether. I am now 29years old, and have been ‘profoundly’ deaf for 5 years.

Have a look at my audiogram below to see what it actually means to be ‘profoundly deaf’:

This audiogram depicts the full spectrum of hearing loss, and as you can see, I am waaaaay down the bottom!

So, I don’t hear much without my hearing aids:

• I can’t hear my alarm clock in the morning.  I get my partner Ben to wake me, or I just wake up naturally.
• I can’t hear on the phone or on a mobile. So I use a TTY phone, msn, text, fax and email.
• I can’t hear people’s voices at all. With hearing aids, voices are muffled, so I lip-read.
• I can’t hear music – but I can with my hearing aids. I love music, and even used to work for Rolling Stone Magazine.
• I can only just hear trucks and aeroplanes, but only if they are close by. With hearing aids they are annoyingly loud.
• I can’t hear my own footsteps or my own voice without my hearing aids – and I have to say that is the weirdest feeling.

So, there you go. It’s hard being deaf, but you get by. Sometimes I actually like it.

Haven’t you ever walked down a busy road, or been in a noisy room, or heard a baby crying on a bus, and just wanted to stop all the noise? Well, I can! It’s the best thing about being deaf. One minute there is a racket coming through the hearing aids, next minute, just wonderful silence, and I can think again.

Anyway, back to the story…Everything I had been hearing about cochlear implants was making me think that it might be worth looking into. Afterall – my main wish is to be able to hear people’s voices better, without having to concentrate on their faces so much all the time. It’s tiring reading lips and body language all the time! And some people even talk about being able to hear on the phone again… I can’t imagine it – I have been without the phone for so long, I just don’t really believe it will be possible. But ….. then again …

So, finally, my last assessment at the Sydney Cochlear Implant Centre happened in May this year – and, after years of telling me I was borderline, and was doing quite well without an implant – they finally annouced that, “gee, you are so deaf now, you would probably benefit from an implant, and now was the time to take the leap of faith. ” Ai ai ai! Mon deiu! The time has come!

I decided to start this blog for my friends and family so they could see what I am experiencing when I get my cochlear implant.

It’s probably also going to be a good way for me to vent when the going gets tough! And it most definitely will get tough. Most people don’t realise that an implant does not give you normal hearing, and takes up to a couple of years of rehabilitation before you really start hearing things better.

But I guess the most important thing for me in writing this blog is that I get to keep it as a diary so I will have this experience on record for the future …  and, as well, to share those experiences with whoever is interested.

Because if you don’t know much about it – getting a cochlear implant is a huge decision, not one to be taken lightly, and it most certainly does not ‘cure’ deafness.

And my cochlear implant surgery date is Wednesday 1st July… Only 5 days away.

The countdown begins …