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.

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

 

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.

 

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!

 

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.

 

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.

 

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!

 

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 >>

 

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 …