The Deaf One

Amanprit Johal’s story on thedeafblog

I’ve got to post this.

Amanprit went to the same Deaf school as me, she’s at university in Birmingham. I have to say, the video is an inspiration. I would also like to point out that the man on the telly when she’s doing the speech recognition? See a previous blog post called the appointments continue – I sat in that very chair, watching that very man! The room where she has her CI tuned – that’s the same room I sit in during my appointments at the moment. The difference is that she has a different CI to me, and she’s a year ahead, I so hope I will be in the same position in a year’s time. I wish Amanprit all the best as she continues her university education.

(Taken from theDeafBlog)

Switch On: Day Four

Are you keeping track of what day we’re on? I called Switch On Day, Day Zero so although today is the fifth day, it’s only day four… confused? Me too.

Ah well. So of I trotted once more to another appointment. I am still struggling with the distortion, the biggest problem is that it sounds like I might as well have my old hearing aid in – if it sounded awful, but a different type of awful, I’d be far more accepting of it. This I wanted to make sure I portrayed over to the team frankly and come away with answers, or information.

Firstly, I had a hearing test. Guess what? This is the weird bit. When you have an operation for a CI, they do try, but most of the time, cannot avoid destroying the cochlear and therefore destroying any “natural” hearing you do have in that ear. This is partly why, it is such a HUGE decision to have a CI, because if it doesn’t work (not that it wouldn’t) there is no hearing aid that would work in the ear again.

However, my hearing test showed that my implanted ear is still functioning the same as it was pre-op! Wow! It’s still no use, as the distortion would still be there should I put a hearing aid in it, but that’s interesting nonetheless isn’t it? I did wonder if it might explain my distortion with the CI – perhaps it’s the same distortion? But the audiologist didn’t say anything of the sort, and just promised me that it will get easier so I will choose to go with what he says and not my random theory.

One excellent point my lovely husband made though – today I had the sound levels increased once more. This means that my brain has adjusted to something, the levels have been increased twice since switch on now and I wouldn’t have been able to tolerate the volume of sounds that I am now getting, on Monday. This perspective made me feel much better, even after the programming changes that he made had no effect on the distortion.

I had another chat with the hearing therapist again as well. She gave me some more homework to do. This time focussing on S sounds. For example, the words “Sought” and “Ought” are on the page, the other person says one of them, I have to work out which was said. This highlighted that I am particularly sensitive to the S sound at the moment – the distortion is pretty much putting an “S” sound around every sound I’m hearing. The best way I can describe it is like a cling film of static (like what we used to get when the radios were in-between frequencies, or perhaps when the really old television wasn’t working and it’d have a screen of busy black and white pixels) is wrapped around every sound I am hearing. So every time the hearing therapist said the Non-S starting word, I still thought she had said the S-starting word. So that’s something to work on, and more information for me to walk away with.

She also informed me that I am the first person that she has known, to say that the CI is just like putting my old hearing aid back in. But I know, that the distortion, and the type of distortion I am getting is to blame for that. She has a theory, that some people find it harder to get used to their CI more than others, if they have analytical brains. Oooh, I am forever analysing everything, perhaps there’s a hint of truth in that. If I am analysing every single trickle of sound that is coming through to my brain, from the CI, then it’s going to be pretty heavy on my poor brain to tackle. So I am going to try and be more relaxed about it. The Audiologist did point out that the CI affects everyone in many different ways – there is no telling AT ALL how it will affect someone and how long it’ll take for them to love it, but he’s not known it to fail yet.

Oh and the cutting out that it was doing? We think that the pad on my head just wasn’t sitting properly. We had started with just one standard magnet on Monday. By Friday we are now on TWO double strength magnets and finally, the pad clunks! It actually goes clunk as it hits the spot! So we think that will solve that problem.

So I walked away feeling far more positive than how I felt walking in. I am going to wear it as much as I can with the hearing aid in my other ear to help me tolerate the distortion and get through it easier. I am going to give it plenty of time, I will get there.

We spent the afternoon looking at the perfect house as we outgrew this house about 2 years ago. We can definitely afford the mortgage. It’s the perfect size for the perfect price, the perfect location for the perfect schools, the perfect walking distance to family nearby, the perfect distance to the train station and town, the perfect easiness of friends to reach us. Did I mention it was perfect? The only trouble is the 15% deposit they say we’ll need to put down on it (or any new house for that matter)? The equity on our house only meets about 7% of that… who needs the recession eh? Hmm. But that’s an issue for another day and perhaps another blog. For now, The Deaf One signs out again. I’ll write once more in a few days time x

Switch On: Day Three

Well, the Fourth day since Day Zero and I will be honest. I haven’t worn it much today.

There seems to be a bit of a problem, it keeps cutting out on me. It’s off more than on. I am very confused, the distortion alone is hard enough to bear, but how can I adjust and adapt and learn to hear if it keeps switching on and off?

I have an appointment tomorrow. I really really really want this to work for me, with ALL of my heart. I will be frank about the problems I’m having, I will be honest, I will ask for answers to my questions. I will walk away with my positivity reinstored.

I honestly believe in the Cochlear Implant. I have utmost faith in the technology. I have seen it work for far too many people not to.

Although I do feel that perhaps, there isn’t enough information around – to tell people just how hard it is at first – in particular for those who wore a hearing aid in that ear once upon a time. The blogs I have read, the articles I’ve scoured through, the websites I have absorbed, there is not a lot out there that warns you that for some people, the first few days, even weeks – are absolutely AWFUL. I am very glad that for many people, within days they notice a difference, within a week, they are talking on the telephone. But for some people – it takes a lot longer. I have a feeling, I may be one of the people that it takes time for.

BUT… it’ll be worth it in the end. Oh yes.

Switch On: Day Two

Just a short one today.

No improvements and nothing new to report yet but I am feeling a bit happier that it’ll work out ok in the end after a good chat with a friend who had her CI 5 years ago and researching on the internet. I was a bit disappointed that my appointment tomorrow has been postponed until Friday, but not a lot anybody could do about that. Life gets in the way!

It’s only been three days since day zero, so there is plenty of time yet for improvements. I perhaps was hoping for too much too soon (as my expectations were always realistic). I have discovered though, that I have to wear my hearing aid in my right ear at the same time. I simply cannot stand the distortion for long periods of time but another friend gives me hope, in that he was the same but now cannot bear the hearing aid as the CI is far more superior!

Thank you everyone for your continued support!

x

Switch On: Day One

I have struggled today.

Today has been very hard.

The tinnitus is HELL. The distortion hasn’t improved. It takes me AGES to find where to stick the magnetic pad onto my head! Purple is looking goooooood though, don’t you think? :-D

My appointment at HARC was reassuring, they have promised me it’ll get easier. They increased the levels of sound going through the processor, so it’s louder. Which is great, although it just means louder distortion at the moment. The audiologist seemed pleased with my progress – so if he thinks there has been progress, then there must be. I told him about the indicator clicking, this is apparently a very good thing!

I am really worried about the distortion. I am really worried that they are not “getting” it when I explain. I had distortion problems pre-operation, with a hearing aid – I know distortion like I know a chocolate digestive. I am really worried that this will all have been a waste of time. But, there’s no point thinking like this – if they say it’ll be fine, they are the experts so they must be right!

The Hearing Therapist gave me some work to do at home that involves someone saying words with different syllables and seeing if I could work out which of the three words is being said. There are three possible words in a line on the page. The first has one syllable, the second has two syllables and the third has three. Someone has to say one of the words from that line randomly and I have to work out which word they said – without lip-reading.

There is no “wrong” with this exercise apparently. It’s only that my brain got confused… what a lovely way of putting it! Anyway, I did well, but barely heard what the words were, more that I could hear something, and I could tell just about, how many syllables it had, you can work it out quite easily with a bit of common sense but then I had to hear something in the first place to get the thought process running right? Imagine hearing a sound similar to “duh-duh”, if the three words in the line were “One”, “Morning” and “Quotation”, then which would you work it out to be?

I got one “confused” however, when I thought she had said the two syllable word, when actually she’d said the one syllable word. As the one syllable word was “Duck”, there is often an extension to the K sound which to me at the moment, sounds like the second syllable. Makes complete sense to me, it is interesting.

The tests get harder, with the words sounding more and more similar, the words turning into sentences and the sentences eventually being the same except for the last word. I did well today, and I am actually looking forward to the challenges of the home work!

I am starting to find it very hard to stay positive as the distortion is still very bad. But it’s only day one, and I’ve got a long way ahead of me. The users of the Advanced Bionic forum have been very reassuring also. It has helped to have the reassurance, but at the same time, hasn’t been quite so good for me to read everyone else’s experiences as they all seemed to have much more success far quicker than I have. I am determined to keep going though – this time next week I am really hoping that the post will start with the word “WOW!” – that is my goal and I hope you’ll be there to share it :-)

x

Switch On – Day Zero

Firstly, THANK YOU to everyone for your support. I really have had the most amazing messages from friends and family alike by text, on Facebook, by e-mail and comments on here. I really really appreciate it :-D I must apologise for being so vague in the information I’ve provided so far. Especially to my closest friends and very immediate family who I know have been wanting me to fill them in – I’m sorry they will find out like this rather than personally but I hope they understand. There’s so much to say and so many thoughts running through my head, I really just had to write it all down first and there is going to be far more written down here than I could possibly fit into a text message.

So here goes…

Well.

The truth? It’s horrible. The “sounds” being registered by my brain sound awful. All I can hear is distortion, wheezy noises and muffle.

BUT it’s normal apparently. A very dear friend of mine who had her CI 5 years ago told me she smiled when she heard that I had said the above. I take this as hugely positive.

The strange thing is, I really expected nothing less than what I did get. The worst case scenario for me (other than it not working at all, but that wasn’t an option ;-) ) in my head, was that the first sounds I’d hear would be just like I’d put an hearing aid in that ear back in the days pre-op. If you’re a regular reader of my blog, or know me well personally you will know that a hearing aid in my left ear gave me a complete mixture of distortion and ringing noises and nothing else. There was no clarity in the (very little) hearing left in that ear and it was utterly unusable. My biggest fear I think, was that the distortion would not go – and the CI would just amplify it.

No matter how much I prepared myself for this, it was still a huge huge shock when it happened just like I feared. I tried very hard to make sure that I stayed calm and realistic but in reality my heart was beating fast and I suddenly became quite withdrawn in my thoughts. For some reason, I couldn’t even talk to my Mum or Andy about it and this is the first time all day that I’m telling anyone how I’m really feeling about it.

I’ll start from the beginning.

This morning I woke up, and felt quite subdued. I have no idea why. Everyone else was really excited, everyone else was messaging me with the most fantastically supportive words, everyone else was eager to know what was going to happen. I just felt a bit blank. My conclusion is that I think now that I was finally forced to accept that this appointment wouldn’t be what I wanted it to be. I’ve been very positive about the whole process so far – I still am – but I have always seen it as a long term thing. The end result at the end of the CI journey is what I’m excited about. The operation and recovery, I knew would be easy compared to this bit.

I think it all of a sudden dawned on me, just how much hard work it’s going to be. I always knew this, but chose to ignore that part up until I was forced to think about it. I believe this is why I bounced back from the operation so well, because I knew that part was the easy bit. Working hard at learning to hear again, is the part I’ve been dreading for weeks.

We arrived at HARC and I was shown into the room by two people from the Audiology team. They talked a little bit about how I was, how the operation went and how my scar was healing. This was good – this made me feel very looked after. They’re fab, the staff at HARC, full praise to them.

It was then the big moment, to put the processor on. Except the pad wouldn’t stick to my head!! Waaaah!

Two more powerful magnets later and finally it stuck. It appears my hair is quite thick – I may not be able to wear the pad over the top of my hair. What a waste of metallic purple!

Seriously, the colour is fantastic – as you may see from the picture above. I love it. The purple colour I chose actually also came with three other colours too – metallic orange, metallic royal blue and metallic jade green. I’ve also been told that if I want any of the other designs – just ask! The lovely man was rather confused as to why I might want more colours than I have (the CI came with silver, black and brown by default so I have those too) but then he probably also would not understand my bag and shoe collection either ;-)

So it’s finally in place, the pad is attached by magnet to my head and the processor is hooked behind my ear like a hearing aid is (but without the ear mould). They first had to test what levels of comfort I have for sound in that ear at the moment. This will change and I’ll tolerate much louder sounds as time goes on, but as the ear hasn’t been used in so long, it would be a big shock to my brain (think wobbly eyes!) if the processor was tuned straight to my hearing loss.

There were four or five different sounds that they slowly increased, one by one. My tinnitus was roaring away, and I mean absolutely hollering. Then, all of a sudden, I realised that the flashing symbols on the computer screen were matching some sort of staggered sounds in my head. They were in my head – not going through my ear canal like I can kind of feel with a hearing aid, but these sounds were almost like an extension of my tinnitus. Slowly, the beeps reached a volume where they were louder than the tinnitus and eventually I had to say when it was loud but still comfortable to listen to. It was weird, it was like I was having a hearing test and everything is quiet except some strange beeps but these weren’t straightforward beeps, these were dull and flat beeps.

That was just a test to get them started with the programming. Using these results, they then programmed the CI and replaced it on my ear and head and turned it on…

It wasn’t a sudden “Wow! Sound!”, it wasn’t a “Oooh, sound!”, it wasn’t even a “Hmmm, I can hear something”, it was neither here or there. It was so quiet, yet so loud. It was so noisy, yet I couldn’t hear anything.

The audiologist spoke. It was like I’d put my old hearing aid back in, I could only understand him by lip reading – there was no helpful sound to assist me. He sounded like he was on the radio, but it was really badly tuned. Absolutely nothing at all was clear. I used the term “robotic” at first, but I don’t maintain that now. It’s not robotic but it is intermittent. The sounds are almost like they are being transmitted through a mechanical device that is crackly and keeps turning itself on and off.

Mum spoke, Andy spoke, the other Audiologist spoke. I slowly noticed a difference, in that at first everyone sounded the same – but then after five minutes I could pick out tiny little accents to the noise which sounded familiar. This was a relief, I was searching hard for familiarity for comfort to help me in this strange noisy world.

The appointment finished and we made our way home. I was staring out of the window, playing with my phone, trying to adjust to the weird sounds being interpreted by my brain. All of a sudden there was a clicking sound. I looked up – we had stopped at some traffic lights. What the hell was it? It was louder than anything else. Click-click-click-click-click-click-click-click. The penny dropped – the indicator was on – the sound was like it used to be with the old analogue hearing aids back in the old days when I listened to my walkman with my hearing aids on T in the car to and from school. The indicator used to interfere with T setting and clicked at me. With the hearing aid on its own – it doesn’t click. Was the indicator interfering with the CI or was I actually hearing it? I don’t know – does a car indicator click to you?

It was probably about 2 hours after the first initial switch on, when I got fed up with it and I took it out. I went out to college.  I put my hearing aid back in for my class – but I’m sure you can give me that. On the way home I gave it another go. I am determined to persevere. I was starting the same track over and over and over again in the car. It was blaring away – it’s a track I know so well (I’m not admitting which track again, just in case you’ve forgotten from yesterday and started to think I might be cool again ;-) ) and I was listening harder and harder each time. Eventually, by the time I got home, I was following the music and knew what point in the track that I was at any time and I smiled to myself – is this improvement? But I couldn’t recognise the melody – that’s still a long long way to come.

I am still being incredibly positive about this in the long run. But the switch on felt quite like an anti-climax to me. I am sure – no, I KNOW – that my blog posts over the coming weeks will get more and more positive. I just KNOW that in a couple of months I’ll be reading this and wishing I had been in possession of a time machine to see what good it will bring me in time which will help keep me going – this in turn, the faith I have in this equipment, will help keep me going I’m sure. I have all this in my head, yet I am still going to bed feeling very deflated tonight. It hasn’t improved enough over the course of the evening to give me anything to be excited about yet but I think I’ll give it a break – after all, its worked hard today and so have I.

Tomorrow will be the real test. I will wake up in the morning and I will reach over to the bedside table, past the hearing aid, and I will put the CI on. I will continue through the day using just the CI. I will make a conscious effort to listen hard, try and recognise sounds and work out what is getting better and what is not. I will make this work, I deserve it, and I owe it to everyone who has been so fabulous over the last few weeks and to myself :-)

I have my second appointment tomorrow. I will write again, and keep you updated.

Love to all,

Bx

Tomorrow is the Big Day!

Well, tomorrow I’m all set to be switched on for the first time!

I am a mixture of:

  • Nervous
  • Excited
  • Unfazed
  • Apprehensive
  • Giddy
  • Impatient
  • Scared

All normal, I understand.

I have had the most fantastic support from friends and family, all wishing me good luck and I cannot thank everybody enough.

I promise to let you know how it goes. You’ll probably need to get the kettle on and open the chocolate digestives in advance of opening the blog knowing me :-)

Anyway, I got everything ready this evening. Box unpacked, batteries charging. This is currently what my bedside table looks like!

 

Note the light on the wall? That’s my smoke alarm. Note the pad on top of the book? That’s my alarm clock vibrating pad. Note the E45? I’m using that to help my scar heal. Note the processor? And the batteries charging? Sorting them each night will from tomorrow be part of my bedtime routine! Eeek!

Before I go, I just wanted to talk a little about what I’m most nervous about. I am very very sure that in time I will learn well, and use the CI fantastically. I have faith in myself that I can do it, and with the staff at HARC that they will treat me well and the tuning in of the CI will suit my needs and of course with my friends and family to support me over the coming months.

You may remember a previous blog post called "Music to my ears", where I explained about music and how music has always been very important to me. I am particularly nervous that music is not going to sound the same to me with the CI and I am worried that due to my profound love for it – I won’t recognise the tunes and melodies (of what I can hear with my hearing aid) to be the same ever again. I was in the car the other day, listening to the soundtrack of “Joseph and his Amazing Technicolor Dreamcoat” (yes I know, I know, but I’m a huge fan of musicals) and I realised while singing absent mindedly along that when I was younger, and saw the show aged just 10 when Jason Donovan was in the lead role I learnt by heart, the words to pretty much the entire musical. I went to see the show again a couple of years ago with a friend, and absolutely loved it yet again. The acoustics weren’t brilliant for my little hearing aid, but as I remembered so many of the words, the show itself was entertainment galore!

Anyway, back to the point I’m trying to make. The prologue song to the show, sang by the narrator…

(as seen here in the movie version just in case you’re wondering what on earth I’m on about:)

… is probably the only song in the entire world that I know absolutely every single word to (nursery rhymes aside as that goes without saying!). Sure there are songs and tunes that I know most of the words to, but this one I could sing confidently (albeit out of tune!) all the way through. It’s only a minute and a half long, so not exactly hard to do, but for me, it’s quite a biggie. Anyway, I love the tune, it’s easy to listen to, the lyrics are easy to follow (if you have the words memorised already) and I think due to the above reasons and my comfortability (for lack of a better word) with the track I’m going to use it in a little experiment of my own. I plan to listen to this track with my hearing aid, and then straight away afterwards with my CI once it has first been switched on, and then track my progress in how I hear it. I’ll let you know how this little experiment goes – if you’re still interested after me revealing this – I do understand it may have affected my rep! :-D

Anyway. Back to what I’m nervous about. I think what I’m most nervous about however, is how my daughter will sound to me. Her voice is so precious and special to me that I am not sure how I’m going to react when I hear her for the first time with my CI. I’m sure that the whole experience is going to be quite emotional, and as my daughters are the most important things to me in the whole world – I am partly doing this whole CI process for them – I think perhaps it’s inevitable, that if one of the things I really treasure, is the sound of my daughter’s voice – isn’t going to be how I recognise it. I have been warned that I may hate what everything sounds like at first – so I hope that I can be realistic and not let it affect me. I have faith that over time, I will recognise the sound of my daughter’s voice again, to a point where I’ve re-learnt what it sounds like, and I’m sure it’ll be in the top position once again of the best things to hear. I’m just rather nervous about the way up to that point. Does that make sense?

Sorry for being fluffy tonight. Tomorrow I will reveal the nitty gritty!

See you then :-D

Three weeks post Op

It’s now been three weeks since my operation, how fast has that gone? I hope you all had a great New Year.

I stopped taking the painkillers about two weeks ago but over the last couple of days, the ear has been throbbing a little bit although nothing to justify the pills. The tinnitus comes and goes, and the scar is quite itchy at times. But I’m really pleased with how fast my hair is growing back and how well it’s healing.

The dizzyness is virtually gone now too, it sometimes catches me by surprise if I move suddenly, and randomly, when I cough it triggers but on the whole is fine now. I’m driving, I have independence! Yay!

It’s now only 6 days until the switch on. I’ve got a very important task this week, of finding somewhere in my house for the processor charging kit to live. Living room? Nah, the Small One could get hold of it. Dining Room? Nah, there’s no room. Kitchen? Um, probably best not to as it’s only little and the cooking steam gets about. Bedroom? Hmm, there’s an idea. I think that’s where it’ll go. Then it means that first thing in the morning, I’ll pop a new battery on and I’m ready to go!

Will write on Monday, The Big Switch On! x

One week post Op

I can’t believe it’s been a whole week since my operation!

Just a quickie tonight to update you all. I finally washed my hair properly this evening now that it’s been over 7 days. It was bliss!

I’m almost back to normal now, the dizzyness is very slight, and I’m confident that by New Year’s Eve in 2 days time it may have even gone completely.

The taste buds still think that bread is cardboard, but that I can cope with; I know what is chocolate and what is not chocolate – that is the main thing. The scar is still a bit sore, but healing nicely and nowhere near as painful as it was. Tinnitus is back to how it was pre-op, which is totally fabby.

The only odd thing, is that my glands on my left side is a bit swollen all of a sudden and my left cheek and area below my left eye is feeling bruised and tender, which I’ll keep an eye on but could just be something completely un-related. My ear still looks different as well, and I’m paranoid that they sewed it back on wrong or something!! But, I’m sure it’s just that there is still a bit of swelling that needs to ease.

Got some more hat hours in today as well, I’ve been looking very trendy indeed :-D

Here is a photo taken shortly after my hair was made squeaky clean! Looking fairly neat on day 8 eh?

If I don’t get on beforehand, then I would like to wish all my lovely readers a very Happy and Prosperous New Year. I have good feelings for 2010 x

My attempt to hide the hair…

I am not allowed to get the area where they operated wet for a whole week which means washing my hair is rather out of bounds, booooo. On Christmas Eve, my lovely Mum helped me wash most of it, being very careful to avoid the area around my left ear, but of course by today, it’s getting in desperate need of a wash again.

Apologies for the rubbish quality of photo; my mobile phone wasn’t really chosen for it’s photo taking abilities, and I look far too tired now to take a shot with my (third) baby (the D90) so it’ll have to do.

So, whatddya think? Do I have enough “hat hours” under my belt to get the approval of the “hat wear” judges?

It covered the hair anyhow!

 

Good news is that I’m feeling much less dizzy today than I have been. Although the lip blister feels far larger and is more irritating than it looks. I’m rather hoping I may lose a few pounds over the next couple of weeks as my taste hasn’t shown any sign yet of returning, so food isn’t quite as much fun! There’s a positive in everything right? :-D

x