Deciding to get a second cochlear implant

So it’s been 8 years since my first cochlear implant! So much has happened since my first one and now.

Ben and I got married!

Then we had a baby:

Then I got a new job:

And then we had another baby – we’re now a family of four!

And now…

I have finally decided, after 8 years – to get a second cochlear implant.

You can read all about my new journey here: An emotional journey to bilateral cochlear implants.

Thanks for sharing this incredible journey with me!

 

 

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.

 

Week 11: What can I hear now?

OK, now for our weekly update on what I can hear now! Yaaaay.

Today I made a phone call to someone I didn’t know.

That’s a big thing, because it can be kind of hard hearing the voice of an unfamiliar person on the phone.

I have been talking to Ben and mum on the phone heaps now since the implant (wow!) and unfortunately, I have the phone bills to prove it.

So, today, I decided to take the leap, and try and call someone I didnt know.

Perfect moment came up when I realised that it was tax-time.

Considering I got audited last year by the tax department because I tried claiming my hearing aids and hearing aid batteries as work expenses, I decided I should probably get someone official to do it this time, just in case.

So, I called the local tax accountants near my work.

I had to prepare myself mentally. Making a phone call like this can freak me out!

So, I got organised, went into the ‘Quiet Room’ at my office, took a few crazy breaths, felt ridiculous, and then dialled. A woman answered:

“Hello? ”

Clear as a bell. I wondered briefly if I should tell her that she was talking to a profoundly deaf person. But no – I decided it would freak her out… Like walking up to someone, in full view, and shouting “I am invisible!”

And besides! I could understand what she was saying. And so we had a normal phone conversation.

It was a little bit unclear in parts – I mean, she was talking normally, not clear and slower than normal, like my family knows how to speak to me – she had no idea she was talking to a profoundly deaf robot person!

So, I was able to talk to her, book an appointment, and also check what documents I needed to bring. That was pretty awesome. But also bizarre.

I mean, who hangs up the phone after talking to their local tax accountant all flushed and excited!? Geez, I hope I never get used to using the phone if it’s this fun to use each time. A bit nerve wracking, but totally worth it.

Another cool experience was the gym.

Now, anyone with a significant hearing loss like mine knows that when you go to a gym class, like say, pilates or yoga (as I am wont to d0), that you need to position yourself in such a way that people are surrounding you – so you can copy people from all angles as you do your moves.

Because, obviously, when you are deaf you can’t hear a word the instructor is saying, and you can’t always see them from your contorted positions!

After years of yoga classes, I have become a master of copying moves of everyone around me without them knowing, and I can even can pre-determine what sort of move a person is about to make, just by the way they are breathing. I try not to look like I am watching my fellow classmates too intently, because I guess it would freak anyone out if they realised they were being stared at doing the ‘Downward Dog’.

Anyway, so I was at one of my regular classes, and I felt particularly rested and relaxed during the class for some reason. I hadn’t realised it, but I was actually hearing the instructor saying: “Breathe in. Breathe out, and hold for 4, 3, 2, 1… And relax…”

I couldn’t believe it.

I sat bolt up-right in the class while everyone else was lying down crouched in some bizarre lotus position, heads down, arses up, and arms bent… I double-checked. Yep. The instructor had her head bent down too, still speaking, and I was hearing every word of it.  

I lay back down in my contorted position, and just grinned like a madman.

Yoga gym junkie gibberish never sounded so good.

 

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.

https://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

 

Captioning Awards night in August

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!!"

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

 

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!"

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

 

Week 8: What can I hear now?

Ok, now this is amazing.

I have had my Week 8 mapping session with Monica at the Sydney Cochlear Implant Centre, and afterwards, she tested my hearing … and I did incredibly well.

Monica suggested I mention on this blog that my result is a bit out of the ordinary – the average word perception is 30 per cent a year after an implant.

The reason to mention that is so as not to give a cochlear implant an inflated promotion! Anyone out there considering getting one – make sure you understand that everyone is different, and different people achieve different results at different times.

(How’s that for a disclaimer, huh?)

Anyway, results from this weeks mapping:

• Sentences with just implant – 100% (before implant – 13%)
• Sentences in noise with both hearing aid and implant – 95% (before implant – 45-50%)
• Single words by themselves with just implant – 72% (before implant – 0%)

This is just … unbelievable.

And the most difficult part was done with just my cochlear implant, not even using my hearing aid ear.

I am flabbergasted for want of better words…

I am going to now:

1. cry a bit
2. then laugh
3. then make myself a cup of tea
4. then wait impatiently for Ben to come home from work so I can tell him
5. then maybe get too excited, and try and call my mum on the phone
6. then I am going to run around the house grinning like a mad-man and jump on the bed. Oh wait. Maybe I will do that now.

In fact, I am going to do them all at once.

 

Week 6.5: Overhearing conversations

I just read a comment from a lovely lady I met in Canberra for the Deafness Summit last year – she lives in Melbourne and got a cochlear implant I think either early this year or late last year.

Anyway, here is part of her comment, and I found it really struck me as being one of the unintended benefits of a cochlear implant when it works really well:

….I notice that I am much more likely to speak to strangers- in the past I avoided having chance conversations with people I didnt know. I really enjoy this – it has been an unexpected benefit.
Wendy

This is something that I have come to notice with my cochlear implant.

Where I used to avoid looking at people, even in the lift at work, or on the street, or on the bus … now … I actually see people in a different light, and am much more open, and feeling like I am looking around for a random conversation! It is GREAT. People with normal hearing might not understand that feeling of imprisonment where you can’t really talk to the people around you.

On the bus the other night, everyone was sitting quietly as they made their way home, and behind me, a woman’s mobile phone rang. She started talking on the phone, not loudly, but unbelievably, I could actually hear what she was  saying.

I sat there, this huge grin spreading over my face, as I listened to the voice behind me – it was the first conversation I had ever ‘overheard’, and it was wonderful. Everyone on the bus sat there looking glum as they were ‘forced’ to listen to her ‘boring’ conversation…

But what they don’t realise is that, no matter how boring, these snippets give you a tiny window into someone else’s life! Hell, I know she was discussing the fact that her friend Brian couldn’t make Pub Trivia on Thursday night because he was working too hard in a new job…. but geez …. when you can hear stuff like that, it’s like people around you become more like …. people  … and not strangers.

So, I kind of half swivelled my head towards her and commented: “I reckon you should tell Brian life is too short, he should go to Trivia, they won’t fire him for leaving on time.”

There was dead silence.

People around me on the  turned their heads, surprised that I had spoken.

I heard a giggle.

Then some people smiled.

I turned back grinning hugely.

Then behind me she mumbled into the phone: “Maybe … I’ll tell Brian he should come….”

I felt like saying to everyone: “You people can HEAR!!!! You should all be talking and having conversations with the strangers next to you everywhere!!! Don’t take it for granted! Talk people!!! Talk!!!”

Maybe everyone needs a good bout of deafness to get their humanity working again.

 

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!"

 

5 weeks since switch on

Ok, now for the big drum roll.

I had a speech perception test with Monica on Monday this week.

I did really, really well.

Now, to remind you what a speech perception test is – this is where I sit in front of a set of speakers in a quiet audio booth, and try to repeat back both single words, and full sentences to the audiologist, and she works out how many things I hear of each word and sentence, and then gives it a score.

I will compare them to the last one I had before I had the surgery for the implant.

These results are truly amazing to me, and confirm that I have SO MADE THE RIGHT DECISION in getting the cochlear implant.

Ok, so:

Before the implant:

• Sentences with the hearing aid in the left ear: 80%
• Sentences with hearing aid in the right ear: 13%
• Single words with the hearing aid in the left ear: 24%
• Single words with hearing aid in the right ear: 0%
• Sentences with both hearing aids together: 88%

After the implant:

• Sentences with the hearing aid in the left ear: 92% (what the?? my hearing aid ear has gotten better?)
• Sentences with implant in the right ear: 97% (WOOOOOO HOOOOO!)
  
• Single words with the hearing aid in the left ear: 8% (what the?? my hearing aid ear has gotten worse? HAHA)
• Single words with implant in the right ear: 48% (apparently the average is around 30% after 1 year of wearing implant)
• Sentences with both hearing aid and cochlear implant together in noise: 54% (still a bit hard to hear in noisy situations!)
• With both hearing aid and cochlear implant together for sentences:  … ….   100%

Yes, you read right.

100% correct with both my hearing aid and cochlear implant together.

97% correct just listening with the implanted ear.

So….

how about that!?

It has been a success.

Best thing is it has started to sound really normal.

People are still robots, but it just sounds … normal … and fine!

Inside I am sighing with relief, no, mentally squealing with joy …  and amazed at my journey to this point.

Last night I went out to dinner with my mum and my little brother Hayden. The thing that stood out for me most was in the car driving to and from the restaurant, I sat looking out the window while mum and Hayden talked (Hayden driving, mum in the back seat! [sorry mum!]).

(Whenever we drive together, my family always lets me sit up the front, so I can be more included in the conversation, as it’s easier to turn around to lip-read someone in the front seat than to do that from the back seat. I have a wonderful, wonderful family.)

And do you know what?

I didn’t look at either of them – I was gazing out the window – … and I heard every single thing they said…

Wow.

The interesting thing is – sometimes when this happens, I don’t feel this huge web of joy like I did in the first couple of weeks… sometimes I feel a bit sad or melancholy that life seemed so much harder before I got the implant. It’s like I just look back and think, wow, life actually was quite difficult.

I realise now that people with normal hearing just lead such relaxing, easy lives.

And then I also think about the people that might not have such a good outcome as me with their own cochlear implant, or people who don’t qualify for a cochlear implant.

And I feel quite sad. Just because it doesn’t seem fair that I might have such a good outcome, and other people might not.

I guess the only way to get around this feeling for me will be to promise myself that no matter how good my hearing gets, to never stop my personal fight for the things that make life easier and more equal for deaf people: captioning, hearing aids, affordable hearing services, Auslan taught in schools, teaching support in schools, understanding of communication needs, mentoring and support, the list just goes on and on.

I guess it will be a never-ending fight.

But hooray for 100 per cent speech perception test results! Feel like I should have been presented with an award or something.

 

4 weeks after switch on – I went to the cinema!

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!!!!

 

How does it sound now?

Amazingly, now, the sound is much more normal than it was in the first 2 weeks. Less robot, more normal but echoey.

Some cool (and not so cool) things that I have noticed in the 3 weeks since being switched on:

• I can walk home from work with both the hearing aid and cochlear implant switched on. Traffic noise doesn’t bother me as much anymore. Before the implant, I always walked home with both my hearing aids switched off, because the traffic noise gave me headaches, even when I turned the sound right down.

• I don’t get headaches as much as I used to – I am not sure why – I suspect it’s because the hearing aids were just amplifying the noise, and so my eardrum was constantly being bombarded with incredibly loud noise, 12 hours a day, or however long I had them switched on. Now, because the implant seems to by-pass everything, I just don’t get those headaches anymore. This also means I am less tired.

• I still don’t really like the feeling of the implant under the skin on my head. Sometimes I can still feel the electrodes in my cochlear – I know a lot of people would say, there is no way you can feel them in there – but if I have had a stressful day, and my head felt a bit thick, like I had flu coming on or something – and I could feel the implant moving

• Probably the most annoying thing about the cochlear implant is the size of the processor and the coil attachment. It always gets in the way – I didn’t realise how much I played with my own hair until I got it! I will probably have to get a different hair cut, because it’s too difficult to get my hair behind my ears – and the cord won’t let that happen anyway. So that’s a bit annoying. But hey – I would put up with a lot more than this to be able to hear as well as I am hearing now.

• I am still saying “What?” a lot – but sometimes out of habit! Like, I will hear something, but it’s just become such a normal thing for me, or, I can’t really believe that I have heard something, it’s like a reflex action. It means I am having to rethink my reactions to things.

• People seem to be more open to me since the implant – possibly because of the media coverage, possibly because of the blog – but people seem to feel like they know me better, and so have been telling me secrets or things about themselves that have not told me before, and also things that they haven’t told anyone. And often these are things that have been painful in their lives. I really feel for people when they tell me these things. It’s a weird situation, but one I am very happy about.

 

3 weeks after switch on: Today I did something I haven’t done before

At work today, I tried out one of the accessories that comes with the cochlear implant – the personal audio cable.

This is the cable that comes with the processor - it is amazing because it means that the sound goes direct into your cochlear implant, and you can hear it really clearly.

You plug it into your laptop, ipod, computer, or TV – anything with headphone jack basically – and the sound goes direct into your cochlear implant.

I wanted to try and see if I could hear the videos that I work with at work – I upload lots, because I am an Online Content Manager – and usually I get someone else to listen to them if the content is important.

Well, today … I plugged in the cable, switched it on, and pressed play.

And I could hear it.

I could hear AND understand almost every word that was said. And the amazing thing was, I was only using the implanted ear, not my other ear with the hearing aid.

I was listening with only one ear, and for the first time in a long time, I was understanding a video without captions.

I had a little cry over my keyboard at my desk. This is the first time the cochlear implant has actually moved me to tears.

For me, the cochlear implant is … just so good …  such an improvement on my old hearing … and that makes me feel a bizarre mix of sad and happy. Happy because of what has opened up for me … and sad for my previous self that struggled for so long, and resigned herself to being left out of certain things.

So, I just had a good cry while I listened to our CEO discuss financial figures for the year and how important insurance is for small businesses in the face of climate change.

*sigh*

Who would’ve thought such a boring topic could elicit such a response.

 

Cat with a cochlear implant? Yes it is true!

Now, most people who know me, know I love cats. I was intrigued when I came across this photo on the web, which I didn’t really believe was true. Until my audiologist told me that apparently it IS true! This is how scientist have been studying the effects of cochlear implants on deafness!

Cat: "One more photo of me in this state, and you die, man." Just kidding! How cool is this! I have to admit, it's my new dream pet! Implanted cat 5 months after surgery. The cat wears the device 8 hours a day, 5 days a week. These cats are born deaf and offer an excellent model for studying congenital deafness. With the implant, cats will come when called and demonstrate behaviorally that they can hear.

After 3 months of using the cochlear implant, the synapses of auditory nerve fibers in these implanted cats were compared to those of normal hearing cats and congenitally deaf cats of the same age.   They discovered that cochlear implants “rescued” the synapses of the deaf cats.

Check out the website for more details on this:  Endbulbs, Activity, and Cochlear Implants

I am sure many people would call this cruel; but hey, I’ve got an implant, and I love it! So, I find it fascinating – but geez, that poor cat doesn’t look too happy in the photo, huh?

But it has inspired me!

I am not alone!

There are cats out there that are like me too! haha!

I almost feel like getting a deaf kitten from the RSPCA, taking it to Professor Da Cruz, and pleading: “Work your magic, Melville!! My cat wants to hear again!”

And then, post surgery,  the kitten and I will prance off into the sunset, happily talking to each other in robotic meows, and comparing battery shelf-life.

Yep, that’s what it’s come to now – I am day dreaming about having a ‘matching’ pet  (like people who get haircuts to match their pets!). Instead of B1 and B2, it will be Cochlear Kate, and Cochlear Cat. I’ll get it a leash too, so I can walk it! Awesome. We can share processors. So many possibilities!

 

Another ‘Hear For You’ student has become a school prefect!

I think this is amazing.

I got an email from the mum of one of the students that I mentor – Dan’s mum, Clare – and I really wanted to quote what she said, it made me feel so proud:

Dan has some big news which we are so very proud of. Today he was chosen as a School Prefect for Year 12! I’m sure the mentoring experience helped to give him the confidence to apply for a leadership position but I am gobsmacked that he was one of the few chosen out of so many hearing students… It’s just such an amazing achievement.

Now, I have just received the Hear For You email update & discovered that Dan’s not the only one… Adrian also has become a Prefect.

How wonderful is that! Congratulations & thank you so much for encouraging our kids to believe in themselves.

You might remember another blog post I made a few weeks ago (in fact – the day after my surgery!) about Adrian becoming a prefect!?

Well, it just blows me away that two of the kids in my group have become prefects – that is, student leaders at their schools – it’s really an achievement on their behalf.

Well done guys!

And to celebrate, I am going to post some pictures of us during the mentoring program workshop a few months ago.

Adrian and Bella, listening attentively (I hope!) in our Year 11 and 12s workshop. Well if they were bored, they didn't show it. HAHA

If you would like to know more about the mentoring program, visit the Hear For You website. We are all volunteers, and it’s a non-profit organisation, so we really do it out of pure passion!

Dan Harris during one of our workshops. Congratulations on becoming prefect Dan!

Thanks to The Cochlear Foundation which has already given us much needed support to keep the program up and running.

We realise the need to continue raising money will be ongoing, so if you have a fundraising idea that could help us keep the program running – please contact Olivia Andersen at info@hearforyou.com.au.

On another note, (and something we should contemplate doing to raise funds!) if you wanted to support someone doing something good for kids with a hearing loss, a mum of a boy with a cochlear implant is doing a Fun Run for The Shepherd Centre. You can donate to help Fiona raise money for this very important not-for-profit organisation which teaches hearing impaired children to talk.

http://www.everydayhero.com.au/donation_here

Dan, Adrian and Bella all working hard - geez, we're task masters aren't we! Dave and I usually work them to the ground in every workshop. (Just kidding! Obviously we are doing something right, eh?)

That’s all from me – over and out.

Oh, wait, I should probably tell you that I went for my second mapping session this morning. It went really well. I did a ‘spur-of-the-moment’ sentence recognition test with Rachel – and … I got 100 per cent!

Wow.

I will be doing the full and totally official test in two weeks, so then we will really see if I am doing as well as it appears.

But for now, I am pretty happy!

 

2 weeks after switch on: fun with magnets

Check out the hearing aid battery stuck on my magnet all day today! How funny! I wondered where the hearing aid battery had gone. Searched everywhere for it.

Had a huge laugh this afternoon.

I had been leaning back in my chair at work, scratching my head, and as my hand brushed over the cochlear implant magnet on my head, suddenly felt a piece coming loose.

My first thought was: “Oh my GOD! I’ve broken it!”

But when I pulled it off, I realised that, stuck to the magnet was a hearing aid battery that I thought I’d lost earlier this morning. So I have had this battery magnetised to my head for the entire morning. HAHAHA!

After getting over the fact that I hadn’t noticed this thing attached to my head, my curious side got the better of me, and I decided to try other things. And lo – paperclips, butterfly clips, pins, tacks, they all stick to it as well, and even portable USB data holders (yes, I tried that, though I wouldn’t advise doing it, as I think magnets are bad for wiping files etc).

So, I’ve had a rather interesting afternoon!

Who would’ve thought an implant could be so much fun.

As for what I have been hearing lately, see the list below:

• heard the indicators on the car for the first time yesterday – remember I said I couldn’t hear them before the switch on, and not after either? I had been so disappointed, as this is what everyone kind of whoops about when they first get the implant. So, mine only took almost 2 weeks. It just shows you though, how much your brain is evolving while you have this thing switched on.

• I called mum again last night, and had a conversation with her in the car. Whoot! third time I have called her!

• I called my sister in New Zealand yesterday (or rather, she called me, so I could test out the office speaker phone), and it was a little bit harder to hear her – maybe because of the bad line, but I could still hear her saying “Henry is in his high chair, I have a friend over for coffee, so I can’t really talk, and it’s Henry’s birthday today”. (Woops! Um, Happy Birthday Henry! How could your Aunty forget!? You really were the reason I called, not just to test my new ear! *blush*)

• At work they sometimes do fire alarm tests, and always a guy comes on over the loud-speaker before the alarms start, letting everyone know it’s a test. Of course, I can usually never hear what he says, I just hear a loud rumble, and then the alarms go. But this time???? I heard it start, and then once I focused on the voice, I could hear him saying “Thank you for your attention, we will be doing testing of the fire alarms today. ” And Penny, my boss, turned to me to tell me what was going on (as she always does – bless her) and I was able to say ” I know! Alarm testing!” Whoot!

So, it is going well. But I am still having trouble hearing the TV without captions, and sometimes I am still needing people to repeat themselves in quiet situations when I haven’t been facing them. So it’s still not perfect. I am still deaf, and always will be.

But I have to say – it’s an improvement compared to what my hearing was  like before. And I really didn’t think I would be saying that so early after getting it switched on.

High five to me, high five to Graeme Clark, and high five to Cochlear.

 

12 days after switch on: I called my mum!

Yes. You read right. I called my mum on my mobile phone (speaker phone though!), and we talked for 6 minutes, and I heard almost every single thing she asked me. It was amazing. No lip-reading. No prompting. We just had a conversation!

This was on my wish list to achieve by the end of the year after I got the implant.

And this was after my first ever mapping session, 1 week after I was switched on!

The mapping session on Friday was where I got plugged in again to the computer, and Monica, my audiologist, ‘remapped’ the sounds to suit my comfort levels for this week.

And I have to say – this 1st mapping session had much more impact on me than the initial switch on.

It was truly remarkable how much my ear had gotten used to the sounds of the implant.

Monica went through each of the sounds of the electrodes, and asked me whether each sound was loud or soft. They were all very, very faint, and you should have seen the look on her face when I told her that! Because it turned out that these sounds were the ones I could barely handle on the first day of the switch on – i.e. they were too loud for me! So already, after one week, my brain had gotten used to the sounds, and wanted more.

And that is what it felt like – I just wanted more and more and more. So I said ‘crank it up!’ (I AM a bossy client! HAHA)

Monica said: “Right, I am going to switch it back on again, and this might be very loud, so just let me know.”

And BOOOOOOM!!!!!!!!!!!

It was on.

Boy, was it on.

It was SO LOUD that when Monica said very quietly: “How’s that?” I nearly screamed! But she immediately turned it down by a couple of notches, and then WOW!!!!!!!!!!!!

Everything was SO CLEAR!!! It was still the robotic sounds, but now they were more like R2D2 chirpy, clear, lovely lovely lovely!

I could hear every little crackle of my movements, I could hear her voice more clearly. It was just incredible. It really was better than the switch on, where I couldn’t really work out what I was hearing, and the sounds sounded kind of ‘messy’. Now the sounds were like a waterfall in the desert, my brain was lapping them up.

We decided to call Ben.

Once I had settled down, put the phone on speakerphone and dialled, I could hear him quite well, although we had a minor freak-out when Ben answered the phone with his trademark crazy high-pitched “Yeeeeeeee-aaaaaaaaaaaaaaaaa-rrrrr-sssss??????” which starts in bass, and ends in a screech (used to deter tele-marketers calling our home phone at night. It usually works every time.) But the sound had the effect of making it all jumbled, so I had no idea what I was hearing, though Monica looked horrified!

Monica: “What IS that? It isn’t Ben!?”
Me: “Uh…Yep, it should be Ben.”
Monica: “Riiiiight.”

And then I had a conversation with Ben on the phone! It was a bit hard with Ben because his voice is very deep and rumbly, and goes all over the place, but I was still able to understand most of what he said. I was elated! Usually, if I ever call Ben, it is to have a one-sided conversation, so I’ll dial and say:

“Hi Ben I am coming home, text me if we need anything from the supermarket. Bye!”

And I hear what sounds like a yes or a no, or a goodbye, usually have no idea what, and then I hang up. HA!

So, with this conversation, I asked him what he was doing, and I could very clearly hear him say he was walking around the loungeroom without his trousers on, in just his underpants! HAHA!

(Poor Monica, having to listen in on our first ever conversation, huh?)

Though also kind of worried that maybe it was just luck that I could hear. I kept thinking “It was just because it was on speakerphone, and perfectly tuned, and I was probably guessing.” I just couldn’t believe that I could hear him.

However, Monica confirmed for me, that I had, in fact, used the phone…

Wow….

In fact, after I hung up, I was so excited, I pleaded with Monica, could we please please please do a speech perception test. Told you I was a bossy client!

So, we went down to the audiology booth to do the test. I sat in the quiet of the room, and Monica started up the sentences… but before she did, she said: “Now don’t get too excited, you can’t expect too much in the first week. Most people only get 30% of ‘single words’, even after one year.”

I was thinking “30% after one year? geez. Oh well, I was getting 0% for words in my ear, so even 5% would be good.”

She started the test and …

I ended up getting 28% of single words in the first go!

Then, bouyed by this, we decided to try the sentences!

I got 88% understanding of the sentences, just using my cochlear implant, without the hearing aid. OMG!!!!!!!!! It’s a miracle! And I’ll tell you why. I was getting only 13% sentences with my hearing aid in that same ear before the implant. So that’s a HUGE improvement.

So, when I got home that night, I sent mum a long SMS to tell her what had happened. And then, just as I sent it I was thinking “Why am I SMS-ing??? I should CALL her!!”

I got my Telstra HipTop mobile phone out, put it on speakerphone, dialled, and then, mum answered, totally freaked out:

Mum: “Kate????? Is that you?????”
Me: “Yes, it’s me mum!”
Mum: “Can you hear me?”
Me: “Yes! I can hear you!”
Mum: “Oh my god!!!!! This is fantastic!”

And then we had a long conversation! Well, long for me is 6 minutes. I don’t ever use the phone. So 6 minutes is like a flipping miracle, I can’t tell you. And I heard every single thing she said to me, bar one, where I had to ask her to repeat a word I didn’t catch.

Wow. I was so stunned.

So I am pretty happy! There is still a long way to go, but holy-flipping-moly, this is better than I thought.

That night, Ben and I drove to the Blue Mountains for a weekend away, and he tested me out by making me have a conversation while he drove, in the dark, without me looking at him. I was able to do it, but I have to say – I really don’t feel like I am being polite when I listen to people without looking at them. In fact, it just feels plain wrong. And sometimes, just out of habit, even when I have heard something, I will say “What?” And then think “I heard that! Didn’t need to say what!”

Old habits die hard.

 

Day 7: Cool things I have heard today

Things I have heard today:

• My boss Penny coughing sounds really cool, like a cat connected up to lots of wires, meowing in staccato, but robotically. Sounded so good, I asked her to ‘please keep coughing’.
• The roller ball on my mouse when I scroll up and down pages, has a very satisfying quiet little purr. I sat there scrolling up and down a page for about 2 minutes with a dazed expression on my face.
• Funny moment – realising that many noises I make sound exactly like the swooshing of the ‘Light Sabres’ from out of Star Wars – so as I walked home last night, started making sounds with my mouth like “Szzzhooooo! Shzzooooo!”, having a galactic battle between good and evil as I walked the pavement. I HAD checked around me before I started, thinking I was alone, but hadn’t noticed an old guy who had been sweeping his driveway. I walked past, and realised I had the attention of a very puzzled man watching a young lady “Star Wars szcwhoooshing” to herself.
• When I yawn, my hearing kind of goes all muffled in my normal ear – and it always has… but I just discovered that the cochlear implant ear keeps hearing completely normally even throughout a yawn. You should try it next time you yawn to see what your ears do… Does your hearing kind of go muffled or dull, or do you kind of ‘go temporarily deaf’? Sooo weird.
• When I was walking to work this morning (cochlear implant in, no hearing aid) I was standing at the lights, waiting to cross the road. There was only one other person standing with their back to me, a couple of metres away, but I could distinctly hear people having a conversation – though couldn’t make out the words. I searched around me for the people chatting, and couldn’t see any. Turned out the lady near me was having a very quiet conversation on her mobile phone, and I had picked that up amidst all the traffic noise!

 

1 week since switch on: The good, the bad, and the ugly

It has been exactly one week since my switch on, and the experience has been astounding – and not always for the good bits, which is obviously hearing things.

I have discovered several weird things about cochlear implants which have confirmed for me that I did the right thing in waiting until I was well and truly ready to deal with everything that came way as a consequence of it. I knew that things would be difficult, but nothing quite prepares you for it.

I’ll tell you what’s been happening.

The Good

Obviously, hearing stuff is the good part! I went to the movies last night to see “Coco avant Chanel” with mum, and with both the hearing aid and cochlear implant, I was hearing the french pronunciations really well. Good old mum, she sat through it with me, having seen it before, because the Spanish film we were initially going to, “Limits of Control”, turned out not to have subtitles! Gah!

I mean, my hearing is getting better, but there is no way I can watch a full movie without subtitles or captions yet. The only other film that was on with subtitles was the one mum had seen. And what a wonderful mum – she offered to watch it again.

So, the good is that I am definitely picking up words that I couldn’t hear before, and it’s clearer.

The Bad

The very worst thing about the cochlear implant is what it sounds like. It’s just not a nice sound. It’s a cool sound – but it’s not a nice sound – if you can understand that. Most of the time I can enjoy it, because I am hearing things I haven’t heard before, and it sounds like sound effects from Star Wars, a film I grew up with, and loved.

But overall, the sound is kind of like a constant tinnitus, a ringing in the ears… And can you imagine having to listen to that all day, every day? Like every sound translated into an annoying high-pitched ringing?

It gets on your nerves a bit.

The other bad thing is that sometimes I can hear people talking, but I just can’t make out what they are saying. It is SO frustrating. It’s like I am on the tip of the ice-berg, listening to a language that I am not very good at, picking up things here and there, but just not being able to follow.

The Ugly

Lastly, the really weird part of the implant – is that now when I switch it off …. it doesn’t ‘switch off’ in my head.

*cue creepy music*

In the shower, without the implant on, it sounds like it is on. I can hear the implant version of water.

In bed at night, I think I can hear voices, or running water as well.

No, the implant hasn’t malfunctioned, or started being controlled by a Russian satellite hovering above earth for use in spying to get state secrets. Though that would be kind of cool.

I have a theory that it is my nerves in my cochlea going a bit nuts from being stimulated so constantly all this week after years of silence. If you consider, from about 5 years ago, right up until the switch on last week, I never heard anything in that ear, and never even got tinnitus. I always counted myself lucky in that respect, because I know tinnitus can drive you nuts.

But now – at night when I take it all off, and go to bed, I lie there listening to the range of sounds going through my ear like a scale, wondering what on earth is going on in there. I have double checked with Ben, and there is no sound when these things happen. It is literally my nerves creating ‘phantom’ noises.

It must be what it is like when you get an arm or leg amputated – but you can still feel it there.

I had been ready for something like this – mentally preparing myself for my ear and brain to be doing weird things – but it definitely makes me glad that I waited for so long to get it. Because I am a lot stronger and a lot calmer now than I have ever been. I have all the faculties to deal with this kind of thing. I have been thinking that it would not be good to get a cochlear implant with a fragile mental state, as it is these things that could possibly push someone over the edge.

Because I can feel myself lying there in the darkness at night thinking “Stop! Stop!” to my ear, and it doesn’t! The panic rises, all your normal senses are out of whack. It takes a lot to lie there and think of something else.

I think that the only thing that would stop those weird noises would be to put the bloody implant back in! GAH!

But, having said this … deep down I know that these ‘phantom sounds’ that my ear is making are actually a good thing. Those nerve-endings must be freaking out in there, being electrocuted ever second of every day just when a noise happens. It really feels like my ear has been ‘awakened’, and now doesn’t want to ever sleep. Like my ear is taking intensive language classes in the middle of the night while the implant is away, so as to be on top of things when it comes back.

The implant is like the school principle with a big long cane ready for whacking my cochlea into shape in time for exams.

It is my body and my brain dealing with something that humans are not normally meant to deal with.

So, I am just trying to be kind to myself – it is interesting just how hard I am being on myself actually. Trying so hard, when sometimes you just have to sit back and let everything flow over you.  

My new motto (well for this week at least) is now “Kate! : be kind to Kate, or I’ll cane you”.

 

Day 5: interesting sounds around me

Today it took me an hour to walk to work instead of the normal 40 minutes, because as I walked, I had to keep stopping to work out what the hell it was that I was hearing!

I had taken my hearing aid out, and just had the implant on – and suddenly, as I walked up my empty street, I thought I heard laughing, and then someone screaming. I stood in the middle of Harrison Street in quiet little Cremorne, thinking “It either sounds like a serial killer after his morning coffee, or maybe a Kookaburra – but we don’t really get Kookaburra’s in Cremorne”, and then I looked up – and there it was.

No, not a serial killer, a Kookaburra!

I could hear it! A kookaburra sitting waaaaaaay up on a TV antenna on someone’s house! And the ‘screaming’ was about 6 other little Indian Myna birds attacking it!!! I am not sure I would have heard that with just the hearing aid. So it was pretty cool.

At work, everyone sounds very robotic, but I think that I can hear my boss Penny better! She is certainly typing loudly. HAHA!

My work colleagues sound like 'The Daleks' from Doctor Who. Poor things, I won't tell them, but I prefer them sounding like that. (Ah. They might read this. Well - you guys sound delightful. Please don't exterminate me.)

And then, our brand manager has a booming voice, I didn’t realise. When he started talking, I paused my typing thinking “The head of the Daleks! I can hear the Head of the Daleks!!” And then suddenly, it was like an army of Daleks. But when I checked it out – realised it was just Dean, Penny and Sylvia talking. I think they sound better like that.

I called out t o everyone:  “Hey cool! Dean sounds like a Dalek!”, and I wasn’t looking at him, but I very clearly heard him say, over the partition: “Exterrrrminate! Exterrrrrrminate!”

Though I couldn’t understand what he was saying without lip-reading once he went back to normal talking, so I might have to ask him to always talk like a Dalek when we discuss things. Like monotone: “Kaaaaaaaate! Pleeeeeeeease doooooo thiiissssssssss jobbbbbbb forrrrrrr meeeeeeeee!”

Other cool things are the pings of the lift. I didn’t realise that the lift makes a very quiet ‘ping’ as it goes past each floor up to Level 11. Awesome. I love the lift.

I have to say, I am really happy I did this. But I am also so glad I waited until now. Because as great as I feel about it, it is still hard – walking around and not quite knowing what all the sounds are – voices are still not very clear, but with the hearing aid as well, I think every now and then they are clearer than I have heard them in a long time. Yippee!

And if you are interested, you can read the official media release from the State Minister for Health’s office about the extra funding allocated to the Sydney Cochlear Implant Centre:

Cochlear Implant funding, 22 July 2009

Love the spelling mistake, and anecdotal error about my career: “Kate Loche can now continue her career as a journalist.”

Still, who cares, when it means that there will be more cochlear implants available for people who need them!

 

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!

 

Daily Telegraph story: “The moment Kate Locke was saved from the sounds of silence”

Well, after all that, here is the story in the Daily Telegraph:

This is the video they made of Professor Da Cruz and I at the switch on.

They do make it sound like I was ‘saved’ from something terrible (hahaha), but they did a pretty good job with the video!

You can click on the links below to:

1. read the original article
2. watch the video
3. see a screenshot of the actual newspaper story (thanks to Steven Herod!)
4. second ‘spoof’ article, the next day: “Years of noise can’t be explained“, By Joe Hildebrand, The Daily Telegraph, July 24, 2009

GEEZ! It is a big one! I probably should buy the paper.

You can post comments on that online article as well, so feel free to comment away and say what you think about the cochlear implants, good, bad, whatever. It’s important that people talk about it.

Even this morning, I am hearing more and more things. They keyboard is still dinging, but I was also able to hear Ben saying some words hiding his mouth too. It was hard (maybe because they were rude words!! Bennnn!), but at least I got them! Imagine what it will be like after a couple of weeks, if it is changing like this all the time already?

Amazing.

In fact, just then – I turned around, going “What the hell was that!!??” And it was Ben washing up with the scrubbing brush, and with the water running out of the tap in the kitchen. It sounded like … scrubbing! But the water sounds like about three notes at the top end of an electric piano being trilled all at once. Literally tinkling.

Wowsers.

And then – Ben just crumpled a plastic bag, and it was SO LOUD!! And then he was reading a receipt, and I asked him to read the numbers to me with my eyes closed … it was hard – I had to concentrate …. BUT GOT THEM ALL RIGHT.

Mumma mia!! It’s a miracle!

 

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.

 

Two days back into ‘normal life’

Me (mostly recovered!) and my nieces, Nina and Amandine, at Neutral Bay Wharf in Sydney.

I am back to some semblance of normal life, being able to go back to work, and wash my hair. (Although am still without any sound in my right ear. Only 6 days until switch on.)

But having everything ‘go back to normal’ has had the interesting affect of making me much more aware of the changes to my head and ear.

My ear feels tender to touch now – whereas before it didn’t at all!

I get popping in my inner ear every time I swallow.

And I can REALLY feel the lump under my skin where the implant sits now – and I have to say that it is one thing that freaks me out. Sometimes I just walk down the street, with my hearing aid turned off, in total silence, feeling this lump under my skin on my skull, and wondering what it will sound like, what it is doing under there.

I mean, geez. I have a computer in my head! It’s going to take some getting used to.

One other thing that happened too, today – I was ‘testing’ how much I could hear in the implanted ear (basically nothing, until I get switched-on), but I got Ben to sing against my ear, and all of a sudden, I could hear his voice, though I couldn’t make out what he was saying – I could tell the pitch he was singing in, and the rhythm.

I got all excited, thinking that maybe the sound waves were making the electrodes move, and therefore maybe I would be able to hear without powering up the microchip – perhpas sound could be powerful enough to make the electrodes act like normal hair cells?

A dedicated boyfriend: thank you to Ben for yodelling into my ear when I wanted to 'test'.

But then we realised that as soon as he moved away from my ear, i.e. let go of me, and moved his lips away from touching my ear, it was like the sound stopped. I couldn’t hear it anymore. Even though he was still yodelling away like a mad man. (*sigh* what boyfriends will do huh?)

In fact, I was feeling the sound through my body, via vibrations!

Before I got the implant, I couldn’t understand speech much at all in that ear, though I could hear noise – but I didn’t realise because I used to test it by saying “Ben, talk into my ear loudly”, and then I could make out what he was saying (usually stuff that made me blush). However, it turned out I was actually ‘lip-reading’ by the feel of Ben’s lips making the sounds against my ear – because once he moved away – again, it was like suddenly it became muffled.

But now I can’t even lip-read through my ear, but my body picks up the vibrations, and makes me think I am hearing sounds.

Weird I know. The human body is an amazing thing.

The bionic ear will have to contend with Super Ear!! who will win??

The other weird thing is that since getting the implant, the left ‘hearing-aided’ ear has gotten bizarrely super-sensitive. So I am hearing things out of it that I had never heard before. Like bumps and things coming from the apartment above us. Apparently they happen all the time, but I have only just started noticing it!

And my breathing! It sounds SO LOUD.

So, I don’t know, maybe my ‘bad ear’ was holding back the ‘good’ ear, and now it’s finally free, realised its destiny and become SuperEar.

But all this will probably change after the switch-on. 6 days to go.

 

Final bandages come off! 13 days since surgery, 9 days til switch-on

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.

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 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.

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 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.

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!

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

 

Damn – I have lost some of my sense of taste.

Ah dammit.

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.

 

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 importance of this blog

I wanted to talk about why I started this blog, and why I think it’s important.

My sister-in-law Karen has been reading it, and said to me tonight:

“The weird thing about a blog (if you don’t post comments) is that it can make you feel really close to the person writing it, whereas they don’t even know you’ve been reading it!”

I agree that blogs are weird in that way – they can take you deep into a person’s view of the world, in a way that is different to having a conversation … but this is a good thing, and this has been my main aim with the blog.

I felt it was really, vitally important that the people close to me had a view of what it was like to get a cochlear implant and to be deaf, because I think while there are perceptions that an implant will immediately change a life for the better, it can be so isolating, so personal, so huge, and often people have no idea what an impact it can have on a life.

And so many people think of a cochlear implant as being a one off ‘cure’, when it is nothing of the sort. It’s hard to explain when I haven’t even experienced it, so that is why this blog is important – I hope that it will show the truth, all the good bits and the bad.

Because newspaper articles and stories can focus on the positives a bit too much. One of the first things I picked up about cochlear implants when I started to research them was that none of the real life experiences I came across quite matched the newspaper articles and media I had read about. Or rather, the media glossed over the difficulties you face in rehabilitation and surgery.

After struggling on my own through my deafness in early 20s, not telling anyone what I was experiencing, I learnt that the difficulties we face are much harder when not shared.  

So, I’ve decided that though it might be hard at first, or maybe I might embarrass myself, or people will think I am sharing too much, or being silly/overreacting – honesty and openess are important. There’s not enough of it in the world today. Everyone wants to gloss things over, let everyone think their lives are perfect. But sharing a difficulty, a fear, a reality, is worth it – especially in this case, when other deaf people might be considering getting an implant, and need to see it like it is.

 

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!

 

Two days after

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 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.

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!

 

My surgery: I’m alive!

Did I die? nup.

Did I come out looking like Jabba the Hut? nup

Feeling sick? nup. Feeling dizzy? nup. Loss of taste? nup.

My surgeon is my hero! High five Professor Da Cruz! I really was prepared for the worst. And it was better than I had EVER thought it would be. Hell, I even enjoyed the anaesthetic!

So, we arrived at Westmead Private Hospital around 2.45pm, and got taken up to the pre-op ward. I thought I would have time to get taken to my room, and to settle in, and wait for a couple of hours before the surgery. Ben and I even brought our nintendo DS’s to play. But no. They told me that they had been waiting for me! And that I had to go in right at that moment. God, can’t tell you how scary that is.

So, I left my mum, and my mother-in-law and my friend Kate who was there from the ABC with her recording stuff. Gave them all a hug, managed to give Kate one final ‘sound bite’ (I think I said “I’m really fucking nervous!”) and I took Ben in with me.

I got given the gown, some weird socks, and then Ben made me do a fashion pose.

They weighed me, took all my blood pressure, my heart rate, I had to sign all these forms, and then showed me to a bed behind a curtain where I got changed into the wonderful hospital fashions they have there.

Once I was sitting in the bed, in the hospital gown, ready to go, the realisation of what I was doing really hit me. Luckily the anaesthetist came in and introduced himself. I was like “Oh excellent! The anaesthetist! I have been wanting to meet you because I’m worried about dying under anaesthetic. I’m Kate, pleased to meet you!” He took the intro quite well I thought. Not often I guess people greet you saying they’re afraid you might kill them, LOL! 

He was a really nice guy, and I felt reassured once I met him.

He explained what was going to happen, and then Ben and I were left in the curtained room by ourselves. I took it up0n myself to read my file, and was interested to see the sticky post-it note saying “Patient is deaf”. Duh. What did they think I was getting the implant for?

Suddenly, the curtains were whisked aside, and then I was being told to say goodbye to Ben. I gave him a big hug and a kiss, and it was then I started to feel like I was going to cry. But I didn’t – I really didn’t want to. However, the look on my face in these photos – well, I look like I am about to go in for cochlear implant surgery!

Gah! What am I doing!

They wheeled me through the corridors – I enjoyed that, told the wardsman that this would probably be the highlight of my surgery – and then we got to the small room just before the theatre. I asked the nurses how long it would be, and they told me there was currently one other cochlear implant surgery going on behind the doors right in front of me, and that they’d probably be about 30 minutes.

Getting wheeled out - last time to say goodbye to Ben! How scared do I look?

Luckily, my anaesthetist came in, and put in the cannula (i started getting bossy, ridiculously! I actually told him he should tape up my cannula so it wouldn’t come out!! He was like “Patience! I’m about to do that!!”, and I was thinking, man I must be nervous, here I am telling the anaesthetist what to do). So, he told me “This stuff will calm you, and it will take literally 30 seconds to work.”

He injected it, and in even less than that, within a few seconds I was going “awwwwesome man, I can feel it already! this is great!” I spent ages staring at a particularly complicated looking lamp in the corner, marvelling over how they must use the swivel arm to move it around. Yep. Those drugs were good.

At some stage during the wait in that room, Dr Da Cruz popped in and I thought ‘this is it!’, but he said “I’m just popping out to do the interview with Triple J, I’ll be out in about 10 minutes – and unfortunately we can’t let them into the theatre to record the audio – the infection control issues are just too great.” I was staring at him and the lamp, going “great great, see you soon then”.

Telling the anaesthetist I was afraid he might kill me was strangely satisfying.

I did have a discussion with the anaesthetist about how the anaesthetic, whilst being the scariest thing for me, was also the most interesting. At this point, I was actually looking forward to it.

Finally….. the doors opened, and I was wheeled into the bright operating theatre. There were machines everywhere, about 6 people in there getting things ready. One guy was mopping something, and I thought for a second “blood! The last person died! Eeeeeeeeek!”

But then they were asking me to shift over to this other, impossibly narrow bed, and strapping me in. And then – I took my hearing aids for the last time. Put ‘H2″ in the bottom of a container – that was the one I will never use again, and as I took out the other one, I announced: “Right guys! Hearing aid is coming out I won’t be able to hear anything! Who can I entrust these too?” And everyone lurched to grab it! haha.

Then, it was time for the anaesthetic, and I asked them to show me what it looked like – it was a big horse syringe full of milk white liquid. It was loaded into my cannula, and all of a sudden I couldn’t contain myself. “I’m so excited!! I am getting an anaesthetic! Do I have to count backwards from ten? [they laughed and said no! and then as they injected it…] oh wow! I can feel it! It’s like pins and needles and its going up my body wow i can feel it oh my god before I forget please can you tell the surgeon not to shave off too much of my hair and …..!!!”

Boom. I was out.

It wasn’t like how other people described it to me. It wasn’t just like a split second later I woke up. I woke up with a mask on, and someone talking to me – my hearing aid had been put back into my ear, and I was soooo tired, I just didn’t want to wake up – I felt like I had had the BEST sleep ever.

Soon after though, I started to have feelings of suffocation, and wanted to pull off the mask and sit up. I was feeling my face, mentally thinking “Yes! No Jabba! My facial nerve feels intact!”

Once I was upright, and feeling less suffocated, Dr Da Cruz popped his head in again (I think!) and told me everything had gone well. Ahhh! Relief!

Recovery! I lived! I didn't look like Jabba the Hutt!

It took a little while to come out of it, but once I got the nurses to sit me up, and asked for some water (they gave me ice – never have I ever enjoyed a cup of plain ice before so much) I started to feel …. great! And I mean, really fucking good! I have no idea why. Perhaps it was the fact that I had prepared myself for pain, and for all these potentially terrible things, and none of them happened. I wasn’t dizzy or nauseous. My head didnt even hurt.

In fact, as I was sitting up, there were two other people opposite me also in recovery after surgery. I could see both their heart monitors really clearly. One older man, he looked Chinese maybe, and he had a nice steady heart beat, and looked very chilled out. But the indian woman in the bed next to him – it looked like her monitor was flatlining! I sat up straight, and was thinking “Should I yell for the nurses????” But they were hovering, and coming in and out, and I knew that they had seen it, and they were checking on her every now and then, and didn’t seem worried.

But, yeah, it was so disquieting watching her very weak heartbeat, that I tried to check mine – but the monitor was so far behind me that I couldn’t swivel my head enough. So I actually called the nurses over saying “Nurse? Nurse! How’s my heartbeat? My blood pressure? Am I ok? I feel fine, but I can’t see my monitor!” They thought I was nuts. I thought I was nuts. I said to them, “I think somethings wrong. How could I feel so bloody great, and normal, after coming out of the surgery? It doesn’t even hurt?”

She said “You were given a local anaesthetic as well as a general.” and I thought, ahhh, there we go.. Anaesthetic is my new favouritist thing ever.

And so I was like “Can I leave now? I feel fine.” The nurses looked at each other, sighed, then checked my forms and things, and eventually said yup.

Recovering in my room with mum and Bev.

I was wheeled to a completely different ward this time – and when I got to my room, there was Ben, my mum, and Ben’s step mum Bev. That was great.

I started to tell them how great I felt, and how everything was fine, and it didn’t even feel like I had surgery, when suddenly I felt a distinct ‘pop’ in my inner ear. And suddenly, from all the talking, I realised I could actually feel the implant in my inner ear. I kid you not. I immediately stopped talking and thought ‘whoa not good’ and then every time I swallowed, I could feel it. And whenever I talked, I could feel this unpleasant feeling that it might get dislodged from the vibrations of my voice.  

So I literally went from being bouncy and cheerful to whispering quietly ‘can’t talk, can feel it doing weird things in my ear’.

And finally, I managed to convince the nurses to let Ben stay the night – so he got a little fold out bed next to mine. It was so wonderful of him to stay with me – and he even said he would watch whatever DVD I wanted – since we’d brought a portable DVD player. The TV they offered didn’t have captions, and I need captions to understand what’s happening.

So, that was good. I forced him to sit through 3 hours of the movie ‘Sex and The City’ with me and I’m pretty sure he only grimaced three times.

Sigh, what boyfriends will do. Ben said he would watch whatever I wanted while I recovered. So I suggested Sex and the City. Poor guy. Look at my evil face - he would never normally do it.

So, how do I feel now? Sick of writing.

But seriously, I feel great, though a bit drowsy, considering I’ve had serious inner ear surgery, and they’ve drilled a hole in my skull. 

I have been keeping up the painkillers though, so that could be part of the reason. As mum says, don’t be noble, stay on top of the pain. Good advice mum. I’m currently taking more drugs than The Beatles during their Sergeant Peppers Lonely Hearts Club phase.

And I can’t feel that weird thing in my inner ear anymore. Just a dull ache in my head.

Ben plays at being a radiologist - an x-ray of my head with the implant in it.

I got an x-ray done – check it out – you can see everything! the magnet, the electrode, the cord. Weird.

Actually I pretty much know the entire surgery process now, because someone left the “Instructions for the Surgeon” at the end of my bed when I was in recovery – it obviously came with the packet of cochlear electrode. So as I recovered, I flicked through it. It said stuff like: “Welcome to your first cochlear implant surgery, please follow the instructions below: Step 1. Open the implant packet…”

Well, just kidding, it wasn’t actually in those words – but similar! Obviously Professor Da Cruz is totally ace at what he does, and didn’t even need to follow those instructions. How can I ever thank him enough?

Thanks Melville. You iz da man.

 

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 does a cochlear implant work?

When I was trying to explain to my work colleagues and friends about how the cochlear implant actually works, I found this very useful video, which gives you a clear idea of what actually happens to get the sound to your brain.

View an animation of how a cochlear implant works (flash 7 2.7Mb).

What a lot of people don’t realise is that the implant actually by-passes the ear drum, and stimulates the nerve directly.

I personally can’t imagine how this will feel – I would have thought it would give you headaches all the time, from having the electrical impulses going directly into your nerves. And wouldn’t the nerves eventually wear down as well? Apparently they don’t, but …

I like to think I know a lot about cochlear implants, having researched them fairly heavily before deciding to go ahead and get one – but there are just so many things about it that I don’t understand.

Professor Graeme Clark, creator of the multiple-electrode cochlear implant.

You can see why Professor Graeme Clark, inventor of the Bionic Ear, is revered as a god in audiological circles! The most amazing thing is, he is Australian!

As a young boy Clark’s father went deaf which led to his lifelong mission to help deaf people. His experience with his hearing impaired father was the ultimate motivation that made him seek a way to help deaf people hear.

Inspired by the life works of Louis Pasteur, Clark considered the notion that hearing, particularly for speech, might be reproduced in people with deafness if the damaged or underdeveloped ear were bypassed and the auditory nerve electrically stimulated, to reproduce the coding of sound.

The first multi-channel cochlear implant operation was done at the Royal Victorian Eye and Ear Hospital in 1978 by Professor Clark and Dr Brian Pyman. The first person to receive the implant was Rod Saunders who had lost his hearing aged 46.

Check out the story on him below:

Interview with Professor Graeme Clark on George Negus Tonight, ABC

 

Who is my surgeon; my audiologist; and my cochlear implant hero?

Associate Professor Melville Da Cruz is my surgeon - lets hope he's had a good nights sleep, and isn't grumpy before my surgery!

Have you ever thought about what it must be like to be a surgeon? Do you ever compare it to what you do at work, and how you work? Call me weird, but I often do – even before I was booked in to get this implant, I often wondered how they do it.

I mean, think about it – how many times you get to work in the morning, and do things half-heartedly because you are just not in the mood? Or maybe your best friend is getting married so you celebrated “a la Hens Night”, and ended up waking up somewhere with beer bottle lids stuck to your forehead, and the knowledge you are going to be late for work?

I can’t exactly imagine a surgeon wiping the sleep and beer from their eyes, looking at their watch and saying “Oh shit!  Quadruple by-pass heart surgery in 30 minutes! God, I need a coffee. Will they be able to smell the Vodka Cruisers on my breath? Oh where’s the visine! My eyes!”

No. Well. You would hope not!

I have great faith in my surgeon. He seems like a good guy. He also plays a delicate instrument, the violin, which has gotta be a good thing if he’s performing cochlear implant surgery, huh? I can’t say I would feel the same way if he was a rugby player or sumo wrestler. That’s not to say Sumo Wrestlers wouldn’t make fantastic ENT surgeons. I know Rugby players wouldn’t.

And what about my audiologist?

Monica Bray, Senior Audiologist at the SCIC

Monica Bray is a Senior Audiologist at the Sydney Cochlear Implant Centre, and she is very reassuring because she has had so much experience with cochlear implants. She is my audiologist, and has been has been ‘mapping’ & fitting cochlear implants since 1989, and she was the one that suggested that I wait for a bit before I get my implant – and that was definitely a good move. You have to be so ‘mentally ready’ for an implant.

And finally, my cochlear implant hero – is Professor Jennie Brand-Miller. She is a bilateral cochlear implantee, which means she has TWO implants!

Professor Jennie Brand-Miller’s GI concept overturned our dietary ideas about carbohydrates, and she’s sold millions of books. So she is not just a pretty face, but a very clever woman.

She has a similar hearing loss to mine, and also had Monica as her audiologist – and now that she has had her implants, she can … (*gasp*)… talk on the phone!

Well, that would be awesome, but understandbly, they always say “don’t expect to be able to hear on the phone”, because many people are never able to hear on the phone after a cochlear implant.

But I know Jennie can, because I saw her!

I asked her once if I could come and talk to her about her implant, when I was thinking about getting one. I just really wanted to talk to someone, and see someone who had experienced this scary massive operation and rehabilitation, and had actually benefited.

Professor Jennie Brand-Miller, bilateral cochlear implantee

So, I went to Sydney Uni to visit her in her office, and I arrived a bit early, and was standing outside the door to her office, and could see through her window. And there she was … SPEAKING ON THE PHONE. I couldn’t believe it. Like I said in an earlier post, I haven’t been able to hear on a phone for about 5 years.

So, to see that… I was taken aback, amazed, freaked out, happy, bewildered, hopeful. Couldnt wait to get in there and talk to her.

And so, Jennie would have to be my cochlear implant hero, because she started off with a very realistic, very intelligent view of the implants – that they would require work, and getting used to – but if she persevered and remained positive, she would ultimately benefit.

So – I salute you Jennie! And here’s hoping mine is as successful as yours. High five!

If you want to read about Jennie, check out her ABC Talking Heads interview about her career.

 

Cochlear Implant Surgery: What Happens at The Hospital?

Ever wondered what on earth actually happens in cochlear implant surgery? I have. Short of asking the surgeon if I can ‘have a quick look once he’s got me open’, I’ve discovered some interesting info around the web.  See below:

Prior to Surgery

The implant candidate is anesthetized with a general anesthesia.

Preparing for Operation

Some hair is shaved off where the surgery will be done. This is usually a small amount of hair, behind the ear. I’ve been told by people to remind the surgeon just before I go in not to shave too much off! Might tell the doc to shave it in the shape of a flower or something interesting, just to lighten up his day.

Making the Cut

If you really want to be freaked out, have a look at this link to an animated video of how an implant works.

*ok deep breath* … An incision is made and the skin and tissue flap is lifted so that the surgeon can drill into the skull bone behind the ear. (*Bllllllleeeerghghgherrrrrrrr!  YUUUKKKK*)

*sigh* ….A receiver is placed into the drilled-out area and an electrode array is inserted into the cochlea. (This is the bit that freaks me out.  Hope my surgeon has a steady hand. )

Hey, if you feel like watching the “Animated Video of a Cochlear Implant” on the left, then, by all means, go for it!

Closing Up

The surgical area is closed up with stitches (a small permanent scar may result) and the head is bandaged. Big, tight bandage apparently. Gah!

After Surgery

Usually stay overnight at the hospital, and then go home the next day. I’m going to try and convince the hospital to let Ben stay overnight with me! How awesome, sleeping overnight in the hospital still has that kind of feel of staying overnight in a museum or a shopping centre. Just wrong, but oh so exciting.

Recovery Period

During the recuperation from the surgery, there may be minimal side effects such as temporary swelling, pain, changes in taste, dizziness, inflammation, bleeding, etc. You’re advised not to drive for about 3 days afterwards, I think. Or was it 3 weeks? Geez … better go read my notes at home,  I seriously can’t remember.

 

The choice between music and voices

Most people don’t realise that when you get a cochlear implant, music will never sound the same. Voices will never sound the same.

In fact, some implantees have described the sounds as ‘…robotic … like squirrels fighting … like darth vader or donald duck … high pitched bubbles, squeaks, pips, bongs and beeps… nothing like natural sound …”

My problem is, I can hear most  music really well (well, I think I can), and I love music… But I have trouble hearing voices.

It’s always meant that I always get the words to songs wrong (e.g. instead of “where do you go my lovely”, I thought it was “where do you go without me”, and many more embarrassing ones, that I wont mention here), and I remember very clearly when I was 16 asking my school friends to write down the words to my favourite song so I could sing along to it.

So, I hear the tune and the beat really well, its just like there is an off button in my ear for voices. They’re just muffled.

One of the things I was told when I was going to get the implant was that most people can’t stand the sound of music after the implant. However, others have said that while it took a bit of getting used to, they ended up enjoying it.

My biggest fear was the sound of Ben’s voice changing – he has a lovely deep voice, and I can really feel the timbre of it when he speaks, even if I can’t make out all the words he is saying (being deaf is excellent for avoiding conversations I don’t want to have!) … this was one of the things that prevented me from getting the implant a couple of years ago – I valued the sound of Ben’s voice, and music, too much to let it go.

But now, I am ready to give those up if it means I will hear voices better. Sometimes communication with people around you is more important than hearing a beautiful, awe-inspiring song, or swooning over your partner’s voice!

Because of the way a cochlear implant works – it doesn’t fit all the way into the cochlea, and so it stimulates only the nerves that give you high-pitched sound, not the low-pitched ones. So, every single sound around you is translated into this high pitched tone! It is hard to imagine. It really is. I have had many people tell me what it is like, but … I guess nothing will prepare you for the experience.

The day of my switch-on is Wednesday 22 July … ‘Judgement Day’ (der-du … der-du … der-du *jaws theme*).

Will everyone around me sound like high-pitched donald ducks? and will I ever enjoy music or the sound of my partner’s voice again? I guess it might add a bit of humour to my day if someone yelling at me sounds like a squirrel being strangled.

And what about my own voice?

Now that is going to be weird.

 

About me

My name is Kate, I am an Online Content Manager, and I live in Sydney, Australia.

I have been profoundly deaf for about 5 years, having lost my hearing slowly over the years from the age of 11 – I am 29 now, in 2009. No one knows what caused my hearing loss, which is annoying, but hey, what can you do but live with it!  >>Click here to read MORE >>

 

2.5 days until surgery

So near… not long now.

What is the scariest thing about the surgery for me? I often wonder if I am over-reacting a little, but if you read the list of ‘possible risks’ to cochlear implant surgery, it is a bit freaky.

My fears, outlined in chronological order:

My worst fear is, of course, dying under anaesthetic.

Most people would say “Pffft! As if that’ll happen! You’ll be fine!”

But I think it’s a real fear, though rare.

My father was a paediatrician in a town in New South Wales, and us kids would often overhear stories about patients. One particularly harrowing memory I have is of a story about a group of 14 year old girls from another high school near mine going on a joy ride late one night in their parents car, and getting into an accident on a rural back road. The accident was serious, but most of them got away with broken bones and concussion.

One of the girls had to go under a general anaesthetic to fix her shattered leg. She died under the anaesthetic, and it was later discovered that she had underlying heart problems that had never been diagnosed. I remember noticing dad was quiet for a while after that. I think I was about 10 or 11 when that happened.

So, that is fear number one.

Fear number two is facial paralysis.

Apparently the surgery site is so close to a bunch of nerves in your face, that you can get paralysis down one side of your face, and it goes all lopsided. And though I am not a vain person, I don’t particularly want to look like Jabba the Hutt from Star Wars. But I guess if it happened it wouldn’t be the end of the world. Ok, I’d probably scare my little nieces and nephews until they were old enough to understand that ‘the monster is Auntie Kate’, and have to eat through a straw for the rest of my life, but I know Ben and my family would still love me. (hopefully)

Fear number 3 is loss of taste, or change of taste.

Again, because the surgery is close to a bunch of nerves, there is the potential for interference in the taste buds, either on one side of the mouth, or all over.

Now, my little brother once told me a story about a friend’s father who had to have a life-saving operation on his brain, but they were going to have to go via a particular nerve – and so the surgeons actually gave this man a choice – either lose your hearing, or lose your sense of smell & taste.

This guy chose to lose his sense of taste… (hey, I would have done the same, I think)

And he later said it was the worst thing he could have done, and if he had known what it was like, he would have chosen his hearing.

Well, I think he sounds a bit crazy, but – could you imagine not being able to taste, or smell anything??? At least you could eat those Brussels Sprout and Watercress Smoothies without gagging, so you’d be healthy without the pain … but what greater experience is there than the scent of a fresh coffee, baking bread, the taste of a homemade pie, a hot pizza, a cold beer, a fresh strawberry…

You also wouldn’t be able to smell burning if there was a fire, or smell food to tell if it’s off or bad. Imagine discovering the funny texture of the milk was because it was off! Gah!

So, you can understand the worry there too.

Fear number 4 is that the cochlear implant might just not work at all.

I can’t put my hearing aid back in ever again after the surgery, so this is why they want you to get as little help from the hearing aid as possible.

I have already mentioned that I don’t get much speech recognition from the hearing aid – but I can hear some environmental noises, and it kind of balances my head to have both hearing aids in.

So, the thought of something going wrong and being ‘one-eared’ forever … it’s kind of worrying.

And finally, last fear, number 5 – is dizziness.

Because the surgery disturbs the inner ear, the balance centre of the body, there is potential to be completely out of balance, dizzy and nauseous for a number of weeks or even months after the surgery. That …. would just suck…

So there we have it. All my fears rolled into one post. If this was on paper I would symbolically burn it. But because of the digital age, I’ll just press publish, and let everyone else have nightmares about it.

 

So … what’s actually going in my head?

Ok, the question I get asked regularly is if a cochlear implant is where I get a cochlear transplant from a dead person.

BE-BOW (*game show button noise*) … WRONG!

I simply become a bionic woman via the insertion of electronic electrodes into my inner ear, and I will forever have to wear a magnet on my head, which could get caught on the fridge (perhaps if I was really drunk), or to the car (getting in and out, maybe drunk again).

You also only ever get ONE cochlear implant at a time. Most people wait several years before getting a second, if they get one at all. The majority of people only have one.

To give you the idea of the fear and loathing I had to get over – here are some pictures of what is going on and in my head, as of this month:

This bit goes INSIDE my head. Yaay!

Ok, so this bit is the bit that gets put in when I go into surgery. Scary? Yes. They drill a hole here, sand down some bits there, put back the bit that was missing there, and then patch it all up and hope for the best.

You can see why people always harp on about which are the best surgeons.

Well, my surgeon has the nicest teeth.

But seriously, I was going to ask him my big, silly fear –  if anyone had died under this operation – but at the last minute, all I could get out was “so…. I guess you’ve done a lot of these before..?” And he was like “Hundreds”. I couldn’t bring myself to query how many of these were alive, but I figured I hadn’t seen him on Australia’s Most Wanted, so I was probably ok.

Ok, and now for the external part:

This part is the processor, and goes outside the head.

So, I must admit to being disappointed that the great scientists of the world have still not managed to create a ‘wireless’ Cochlear Implant.

It still just looks like a really crappy hearing aid. Unfortunately, the very worst thing about it is the magnet and the wire. Can you imagine walking around for the rest of your life with a magnet and a wire on your head?

You have to be pretty desperate to want to do this.

But I have to remind myself – at the age of 13, I felt the same way about my new hearing aids – and now I barely notice them. In fact I love them. I haven’t gone so far as to name them, as some people I know do (I kid you not) … but I hope that one day, I too, will learn to love this ugly guy as much as I have come to love my hearing aids.

My beloved Hearing Aids - for want of better name - H1 and H2. RIP H2.

I will certainly miss my beloved hearing aids. (Though I will get to keep one! But it’s still sad to never to be able to use one in my right ear ever again. Sad and scary.)

Because once you get an implant – you can never ‘turn back’ so to speak. It’s like joining a spooky cult where they brain wash you and get you to sell your soul and drink kool-aid. Ok, am definitely joking now, but have to lighten the mood a little. Because the idea that I can never back out of an implant once I get it is scary. So it’s good bye hearing aid.

Perhaps I’ll have a little funeral for it? Like my work colleagues had for my fish when it died. They kept it in the freezer for me and everything (I was away on annual leave) so that I could have a ceremony when I got back. Our own mini-morgue. And our Brand Manager even made me a match box coffin for it.

So perhaps, this is the therapy I need… A hearing aid funeral … to say goodbye to “H2″…

 

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.