Which one?

So far, my preference for an implant has been for a Cochlear Freedom device, as opposed to a Med-El or a Advanced Bionics one. However, Chorost's recent article in Wired got me thinking, and the possibility of a 121 virtual channel software upgrade in the near future (mid-next year I believe) is making the Hi-Res device more attractive. This, coupled with a 90,000 pps performance against the 32,000 pps for the Cochlear device, has got me back to square one when it comes to choosing the implant that I want.

It's a fiendishly difficult choice - I know that as it is the difference between the devices isn't all that great, but reading Chorost's success at meeting his requirements for sound quality (at least for the time being), got me wavering towards the Hi-Res device.

In the meantime I'm still waiting for my initial appointment. Since my coat has been dry-cleaned (see Mandy's post a few days ago!!) I'm assuming that the appointment is due any day! Hopefully they'll email as opposed to snail mail, much faster that way.

Samantha's poem

Samantha is a 16 year old recipient of a cochlear implant. She has a blog that is very interesting, describing her experiences with a cochlear implant. She has a lovely poem on her site, which I found very touching. I'm reproducing it here.

My Worst Fear…July 7, 2005

I’m standing there
As the cold from my feet
Shiver up my body.
Feeling alone, and scared.
I watch the world go by
Yet I’m still there,
Hopeless and not sure
What to do or where to go.
A man taps on my shoulder,
And begins to speak but
All I can “hear” are
His lips moving,
Not a sound,
Not even a whisper.
I try to explain that
I’m deaf but
He doesn’t understand.
As he continues to talk
I feel more alone,
And depressed
I stare at his mouth
Trying to read what he’s
Saying but it doesn’t
Seem to help.
More people come and
Still they continue to talk.
No one understands,
No one cares,
They just go on with their life.
Now that’s my worst fear!

Isn't this moving, it is really philosophical and poignant.

Happy weekend everybody!

Papers in the UK

I just got notice that my papers were received by the University of Manchester, from the Manchester Royal Infirmary, so I think it's a matter of days before I get my initial appointment.

Today we phoned up the Maltese High Commission in London (I miss you London!!!!) to see what status my application was at and they immediately took action to check what happened. Very friendly, efficient service.

At the same time we decided to call the Cochlear Implant Programme in Manchester to see what the procedures are at their end, and we were almost embarassed that they went out of their way so much to try to let us know the status of my application and the procedures for applications of this sort. I sometimes cannot believe that some people in the UK complain about the NHS - they were so efficient, even sending me a test email to make sure that the person at the other end got my email address right!

Thank you, Maltagirl!

Thanks to Maltagirl, a fellow Maltese blogger, I have just read the Wired article by Michael Chorost that I had read about elsewhere but hadn't actually seen. It's available in full here.

In this interesting article, Michael describes his quest to be able to hear his favourite piece of music, Boléro by Ravel (of Torville and Dean fame). For those who do not know this piece of music, it is an beautiful, evocative, orchestral masterpiece which starts relatively slowly, but effectively repeats the same tune seventeen times, building up tempo, adding instruments and urgency to its final crescendo. A beautiful, almost erotic piece of music, for me it is very evocative and for some reason evokes the sensation of Morocco. I have also read somewhere (racking my brains to remember where!) that it's a very good piece of music for when one is, erm, well let's call it getting intimate! Anyway, in the article Chorost identifies hearing this piece of music clearly as his pinnacle, as his Holy Grail, so to speak, in his quest to improve his hearing through the implant. I will let you read the article to judge whether he actually reached his goal!

At the same time I am wondering if I will ever reach for my collection of CD's that is currently gathering dust in the study. I really am determined to do so, but if I can at least put my Deer Hunter CD in and hear it clearly, or approximately clearly, I'll be very happy indeed!

Reading through this article, I confirmed the so many parallels between my quest and Chorosts's - with the difference being that in my case the Holy Grail is Cavatina, a similarly emotional piece of music with a tinge of melancholy - I do remember not wanting to hear it too often as it would get depressing. It is a relatively simple piece of music written for the Spanish Guitar. I also find links in that Michael is taking both a personal interest - he wants to hear again after all, as well as a professional interest (the geek inside every computer worker never ceases, he just gets subdued!). I have read another book or two about Cochlear implants but I found his book fascinating, I think that he is my role model and inspiration in some ways.

WHOAMI

I just realised that I haven't really said much about who I am, and where I'm from. Anyway, I work as a Project Leader with a software company in Malta (click to view Malta's satellite image in Google Local). In case you're wondering, Malta is a small, independent country in the middle of the Mediterranean Sea. We have a Mediterranean climate (doh) with mild winters and long, hot, sunny summers. Our main business is tourism, as can be seen from the link above. However, there are other industries such as pharmaceuticals, electronics, software and even car building.

I live in Attard, although I was born in Floriana but have lived in Attard for the past 20 years.

News regarding Cochlear Implants

Cochlear Implant Sales Shoot Up

Cochlear reported that sales of cochlear implants are going to shoot up drastically in the current financial year, from 10,800 in 04/05 to 20,000 in this financial year. This is, I believe very good news, because I think that this sales spurt will encourage Cochlear to invest more into research and development, possibly in the "Holy Grail" areas of music appreciation and the telephone.

This also shows that cochlear implants are becoming more accessible to ordinary people, even in developing countries. A programme for a four-channel implantation device is in fact being developed in Shanghai, with a fund of approximately 60,000 RMB (USD7,407) per child. This service is provided at the Shanghai Xinhua Hospital and Shanghai Eye, Ear, Nose, and Throat Hospital. Although these costs are steep, it is estimated that a deaf person costs the state 400,000 yuan annually, so the city of Shanghai has concluded that rehabilitation is economically beneficial.

Research is also ongoing for a fully implantable device. This technology is still some way away, approximately a decade away, but it gives hope to people that technology - which has ironically led to the isolation of many deaf people through the obvious lack of accessibility of the telephone and other communication devices - will finally prove to be the saviour of a future generation of deaf people.

Monday 24th October, 2005

Today I decided, on Ivan’s request, to take his coat for dry-cleaning. Ivan thinks that if he is called for the CI he would need his suit. Maybe this in itself will by some sort of magic sets the ball rolling for other things and towards the operation itself.

Then I drove straight to St Luke's Hospital to hand in Ivan's passport and fill in some documents related to the trip. Ivan specifically ordered me to ask the lady in charge of taking care traveling abroad by Maltese patients where his application stands. She told me that his application is in the UK now, and we are just waiting for a date to go ahead. She also gave us the news - not a very good one - that Ivan will not qualify to have his air fare paid, so ouch, so many trips are going to be quite a blow on our finances. I honestly do not mind, in my opinion, money is only a means to an end, money comes and goes, however Ivan is feeling slightly guilty that he is going to be a burden on us.

Now to some forecasting. If I had to make a guess, I would say that Ivan would have his assessment beginning of November, somewhere between mid December to mid January he would be undergoing surgery. Mid February he will have the switch on. Is this just wishful thinking or some wise woman’s intuition? Ivan is becoming super impatient by the minute, I get the idea that rather than building up hope and courage, he is getting more and more discouraged as unfortunately information is not very forthcoming from the authorities! Oh, hopefully things start happening.

Some More...

I have decided to write down some more thoughts about Ivan’s on-going preparations to receive his CI. Ivan is very very excited and impatient, I am more laid back about this all, at least now we know that Ivan is a suitable candidate, and therefore it is now only a question of time. However, we have put other things in our life on hold until Ivan gets the implant, and more importantly, I do want Ivan to start reaping the benefits of the implant as soon as possible, but I have to resist getting as excited and impatient as he is, otherwise our house would start feeling more and more like a mad house.

As far as I am concerned, it will not change much, for me Ivan is definitely perfect as he is, but then again, if he is going to be happier and feeling more complete with improved hearing, then I will also be happier for him! Of course I will get some benefits that other people take for granted, like, calling him from one room when he is in another room, and not having to go look for him myself, not worry when he is at home that he won’t hear the doorbell, or won't hear our daughter crying or won’t understand her asking him for something (although Maria does her best and speaks super clearly so her dad understands her) or for instance not having to accompany him to the doctor's worrying he might not understand certain important things.

Alas, even arguing with a person with a hearing loss is different from arguing with a hearing person. For example, I will put a fight on hold if Ivan is driving, I can't have him driving and looking sideways to lip-read me, and then by the time we get home I will generally have calmed down.

Tomorrow I shall be going with our passports to the Ministry of Health; hopefully things will get going at a faster pace pretty soon for Ivan. In the meantime, I will use this time to prepare myself psychologically to spend the first couple of days without my baby daughter, who is the centre of our lives and the source of lots of joy and happiness, and hoping that the implant won't have much of an effect of Ivan's character.

History

Hello, I am Mandy.......there are several references to me in Ivan's postings, anyways, I am the Wife:) Ivan has been pretty much posting all the current happenings on the Internet. I am going to go back a little bit further than that though.....

The first steps towards the CI started almost a year ago, when we both went to speak to an ENT specialist, because Ivan's hearing had a very bad turn for the worse during a weekend break in the island of Gozo. Although Ivan was very aware about the implant at that time, the doctor, and another consultant were of the opinion that before taking such a major step (the CI) Ivan should first explore another operation called - STAPEDOTOMY. Ivan decided to follow their advice, and towards the end of November, 2004, he had his surgery.

We left home, dropped our daughter (who at the time had just turned one!) to go to the hospital at about seven in the morning. Ivan's father and my soon-to-be mother in law were there before us, Ivan was very very very nervous, much to my surprise I was quite OK, and really wanted to keep sensible for his and my sake...... Once there, the nurses were wonderful, and their patience seemed to have an effect on Ivan too, because he was soon joking with them. However, when it was time for Ivan to go to the operating theatre, and I knew I could not go with him, I started to get that sinking feeling...I just felt so scared ! But then I will never forget when Ivan put on his hospital gown and his hat, he looked so totally ridiculous, and that eased the atmosphere a bit, Ivan cracked some wise jokes, gave me a nice reassuring kiss, he waved to us, all this did give me a little bit of courage...and off he went. I remember sitting in the hospital room with his dad and Rina, who I must say was a tower of support to me at that time. She was not saying much, however she was so reassuring in her few, well chosen words. His father was praying, I could not even bring myself to pray.........We were looking at the clock every five minutes or so, and that in itself was a good thing for us, as we figured out that the doctor was at least doing ' some ' work on him. The phone did not stop ringing, family and friends so wanted to have news about him. After several coffees and teas, and about an hour and a half later, one of the nurses came out to inform us that the operation was over, and the surgeon would be with us shortly. At that time, I started feeling very very nervous again, the doctor came out and explained that he found exactly what he thought he was going to find up - a huge build up of otosclerosis, and that he was very optimistic Ivan would see an improvement in the near future........For us, at that time, that was very good news.....and i could not wait to let Ivan know about it! (I knew that if the nurses in the recovery would try to tell Ivan that he would not understand them very well)

Ivan had a very slow, horrible recovery from the operation........he spent about three VERY long hours in the recovery room, he was having a bad reaction to the anesthetic. These were easily amongst the worse three hours of my life, when they finally brought him in the room, he looked like hell, my heart simply went out to him, he didn't know where he was, he was very very sick!!
Anyways, after having to spend an extra night at the hospital, he was discharged...........I clearly remember in the beginning Ivan was seeing very minor improvements in his hearing, which to us were a very nice surprise, like looking towards me when I called him......however, after some time not only did Ivan stopped improving, but the little improvements seemed to simply go away after two months or so! Ivan was very clearly disappointed...........I was still waiting for the good results to start showing. However, during a consultation with the doctor, exactly nine months after the operation, the doctor apologised and said that he felt that the operation was not a success after all. It finally hit me, Ivan immediately said, OK, what shall I do to start the procedure for a CI now.

Getting closer!

I finally got note from the Department of Health, to take my passport, and Mandy's, to have our travel arrangements made! It's getting closer!

On Monday Mandy's going to the department to sort out details, so I assume that my appointment date is just there waiting to be confirmed. It's going to be a very looong weekend waiting to get THAT date!

I must say I've been very pleasantly surprised by the speed and efficiency of all of the people concerned. I really am impressed, as this was quite a co-ordination task involving lots of different government departments. Maybe the efficiency drive that the Government of Malta is making is paying dividends.

Chicken Tikka Masala

4 chicken drumsticks, slashed

2 chicken breasts, sliced

1 small bunch of fresh coriander, chopped

1 medium onion, chopped

1/2 tbsp ginger paste

4 garlic cloves

2 green chillies, chopped (can be omitted)

125ml plain Yoghurt

125ml coconut cream (can be substituted with fresh cream instead)

juice of 1/2 lime

1/2 tsp garam masala powder

3 medium sized tomatoes, chopped

Liquidise half onion, half of the garlic, chillies, half of the coriander and ginger. Pour it over the chicken, cover, and refrigerate. Marinate for at least 4 hours (I make it the night before I cook it).

When you are going to cook it, heat up the grill to maximum. Fry the garlic and onions, add the Yoghurt, coconut cream, lime juice and tomatoes, bring to the boil and simmer. In the meantime, place the chicken undere the grill and cook until nicely coloured. When the chicken is cooked, add it to the sauce, mixing well. Add the garam masala and the remaining coriander. Serve with Naan bread and rice. Tasty!

Time is a relative thing...

... and its duration is as long as it is perceived to be by the person who is calculating it (Carabott, 2005).

I once saw an interesting programme on Braniac, which is a cool geek (is that an antonym?!) programme on Sky One on Sky TV (this is NOT an advert!), and it made a test - and it's official, time moves more slowly if you're bored or anticipating something.

So time is moving along very slowly for me. Since I haven't had much to report recently, I guess it's why I didn't post much here, no point in spouting useless, senseless drivel for the sake of posting it.

But I thought I'd post something anyway so that my dearest fans won't think I've popped my clogs.

I think I should be hearing from the UK very soon. It would be so nice if I actually had a date to work against!

What it's like to be deaf

People have often asked me what it's like to be deaf, like, what does it feel like to be in silence?

Firstly, my answer is that, you are never in silence. Like most hearing impaired people I have something called tinnitus. It's a sound that you hear in your 'mind' - it's very difficult to explain really but I distinctly remember getting it after I was exposed to loud sounds such as discos (I was young once!). In my right ear it's vaguely like the sounds coming from an untuned television (white noise, I think they call it) and in my left it's a metallic hum something like an engine. It gets uncomfortably loud when I'm angry, or sick, or on antibiotics sometimes.

Anyway, back to the original comments. It's not easy to explain what it feels like. But, imagine one of those simple outline drawings that you sometimes see - they give you the picture, but there's something missing, there's the richness of colour, of dimension, the concept of movement that you only get from a full colour picture. That's the closest I can explain it really.

It's very isolating, it's very frustrating being deaf. Some people completely come to terms with it to the point that they prefer to be deaf. I have adapted, but at the same time, I hate having to rely on others to tell me what's going on, I hate looking like the prize idiot when someone talks to me, I misunderstand and start prattling about something totally unrelated (and start to get a sinking feeling when I see the person's body language saying 'is this guy round the twist or just stupid'). But the thing that hurts me the most and breaks my heart is my daughter. It breaks my heart to smithereens when my little girl tries to talk to me in her high pitched voice (she's almost 2), and I don't understand her. She tries to get me to understand but it's so difficult. She's the main reason why I'm doing this. I want her to have a dad that can understand her.

What do I actually hear? Well, a year or so ago my hearing wasn't terrible, it was just bad, but then it just, well, went away. Now what I hear is broadly comparable to hearing underwater, that bubbly, blurred, blocked sound that comes in. If I had to apply a texture to it, I would call it green pea soup (thick, filling but strangely satisfying), without the bacon (which I allegorise with the background sounds that one hears) to make it more interesting. If I had to apply a colour I would say a very faded red - a distant memory of an interesting colour. My mind has adapted and accepted the sounds I hear as 'normal', but they aren't normal, by any definition.

What do I miss the most after losing my hearing? I miss...

• The crickets chirping on a hot summer's evening
• Birds singing in the morning
• The jingle of my keys in my pocket
• Being able to pick up the phone and call my friends and family
• Cavatina - the theme music from my favourite film, The Deer Hunter. Such an emotional piece of music
• Any music by Queen
• Casual conversations amongst friends
• The burble of running water
• The doorbell
• Listening to the radio when I'm stuck in a traffic jam
• The roar of the reverse thrust on a plane that's landing
• ....

Need I say more?

Waiting

I know that patience is a virtue, and I know that eventually things will happen, but it gets so frustrating waiting for something to actually happen. I am now waiting for a particular board to decide upon my case and approve it. Then the list goes on - my details go to Malta House in London who will then get in touch with the hospital to arrange my appointment in the UK who then get back in touch etc etc etc. Quite a complicated routine, but it is quite acceptable considering the expense of the operation and the logistics involved.

But I wish things would hurry up a little!!