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.

 

Using the telephone with a cochlear implant

This is an interesting one.

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

But I have discovered something really cool.

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

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

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

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

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

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

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

Pressed enter…

Suddenly, my phone rang.

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

“Hello?” I said uncertainly.

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

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

I squealed with delight!

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

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

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

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

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

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

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

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

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

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

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

Today it feels good to be deaf in 2009.

 

Senate inquiry into hearing health launched in Australia

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

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

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

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

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

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

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

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

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

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

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

Don’t miss this chance.

 

My submission to the Australian Senate Inquiry into Hearing Health

30 September 2009

Re: Inquiry into Hearing Health in Australia

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

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

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

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

For example:

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

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

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

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

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

Thanks for accepting my submission.

Sincerely,

Kate Locke

 

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!

 

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.

 

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.

 

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!

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Who am I, and why this blog?

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

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

I have waited over 10 years for this moment.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The countdown begins …