Silence is Golden.

Well, in reality, it's not. For the first time in my life I know what it's like to be *truly* deaf, completely, stone-cold deaf. As deaf as I would be, for instance, on the moon or on Planet Pluto (oh sorry, I mean dwarf planet Pluto, based upon what happened last week!). All I hear currently is the humming of my tinnitus in one ear and the hissing in the other. Interestingly enough I can affect the volume of tinnitus by lying down. When I lie down it becomes almost silent in my left ear.

There was a gentleman on another website, who blogs about his son's cochlear implant. He (somewhat wistfully) wishes his son is in a position to tell him what it's like. My thoughts on the matter were really that for this particular child, hearing through his cochlear implant is going to be so fait accompli that he would not really know what it is like to be really deaf. True, as the correspondent replied to my comment, when he removes his speech processor he is deaf again - however, I still feel that there is no comparison between the deafness that is assisted (by means of a hearing aid or a cochlear implant) to the silence brought on either by choice through the refusal to use assistive devices, or that in situations like my current one when I have no means to actually hear anything as my remaining hearing has been destroyed. It is a world of difference - you are in effect 'hearing implaired' when you wear an assistive device, deafness is what I am experiencing right now. The sense of isolation, of detachment, of solitude, of forming just part of yourself and not part of society is remarkable. I wonder if what I feel is what is felt by astronauts who space walk - they can see the world but at the same time, barring the placenta tying them to their spaceship, they are in a complete, unitary universe with a population of one.

Response to a comment

I am responding to a comment made by a reader of my blog. I was responding via another comment but then I realised it was too long, so I decided to post about this. this is the original comment:

Please do not do it!

Deaf children have human rights but were forced to have cochlear implants because of parents decision or doctor decision. Children are not property .. they are humans who can be proud of deafness. Deaf children do not need hearing aids or cochlear implants to communicate ... they can communicate or be educated .. they can learn sign language and parents can learn this as well.

Doctor just want create cochlear implants because of profit, and just want to be selfish because they want to see to cure deafness - that is selfish

http://deafpositive.blogspot.com

And this is my reply:

John, I respect your opinion, in fact have several deaf friends who are against cochlear implants in principle (I'm meeting some of them this very evening) and I respect their opinions too, however, I have with my own eyes seen many children with cochlear implants, and none of them seem to be irritated by them or hate them, even though they were 'forced' upon them by their parents. I've seen them come straight out of the sea and clamouring for their parents to put their processor back on. They hate the silence that removing the implants leaves. I have seen and heard how they communicate and integrate with the whole world. On the other hand I have seen how deaf children without implants (and with hearing aids) interact with the rest of the world and the difference is huge. And believe me, no child is a possession, I agree, but do you honestly think that a doctor has a right OVER the parents? No way - the parents have a right over their children, to protect, nurture, care for and to take decisions for. My wife and I take decisions for our daughter that are just as far reaching as making a cochlear implant. Which innoculations to give her, for instance, or the kind of schooling or upbringing. Implanted children integrate much better in the real world because they have a sense replicated to represent one that is in existence in the average, normal human being. I am deaf, I am proud to be deaf, but nobody can deny that I am at a disadvantage to the rest of the world because of my deafness.

As to sign language, I find it important, I know some sign language - enough to get along, but even the most ardent sign language supporter will realise that it's not enough. Can you go, for instance, to the Pharmacy, and ask for a spray for your sinuses that is suitable for, say, an allergic reaction to chlorine? How would you sign that to a signer, let alone a pharmacist who doesn't sign? Frankly, sign language is useless outside the deaf community. Our language here in Malta is broadly similar. I speak fluent Maltese, and I am proud of my language and the fact that a country as small as mine has a language and others as big as, for example, the States don't have their own. But what if I were to say, Maltese is enough for me, I don't need any other. What would I do when I go abroad? point at a picture book? No, I also know other languages that give me the opportunity to communicate with a wider audience. In its essence and in its appropriate medium, Maltese is fine, but outside its boundaries, I might as well speak in Swahili.

In education, I am a firm believer in total communication for deaf children - i.e. both Sign AND oral, then the sign can be discontinued if the child wishes, which, from what I understand, is normally the case. This is the practice being followed in the UK from what I can gather.

Finally, the last part - i.e. that doctors do it for profit, I really cannot disagree with you more about this. My doctors here in Malta knew that if they recommended me for an implant, in essence they were losing me as a patient as I don't go to them anymore but a different doctor. Of course, sometimes doctors do operations for a profit (everyone does his job for a profit, outside a nun or priest!!!) but how would you explain the doctors on the NHS/Medicaid system who are paid the same irrespective of the number of operations they do, or don't do? Are they in it for a profit too?

Bluntly, deafness is a disability - I am a disabled person and will be for the rest of my life, unless they find some form of miracle cure. There's no avoiding this subject and there's no beating about the bush. Like all aberrances from the norm, people try to fix it. Put it this way, I am short-sighted, so logically, I shouldn't wear my spectacles, right? I should be proud I'm short-sighted and not worry when I bump into a lamp-post because I didn't notice it there, or a car knocks me into next week as I couldn't see it without my specs. Does this make sense?

John, please don't feel that I am 'angry' or dismissive of your opinions, because I've had these 'arguments' with my friends many a time. There was even a time when I myself was not in favour of cochlear implants, when they were at their experimental stage, would you believe me? I am happy for you that you are so accepting of your situation and have a good, happy life as you are, but that doesn't give anyone the right to dictate what other people do - any more than it allows me to tell someone against cochlear implants in principle, "NO! You should get one as it is stupid to remain deaf" - I will never do that.

On the other hand I think that so much misinformation is out there about Cochlear Implants that I really do get annoyed about it all. It's one of the reasons why I set up this blog really.

Switch-on in 2 weeks time

I've got my switch on coming up in 2 weeks time and very frankly I can't wait. When you're waiting for something time really moves slowly! Hopefully at this time we'll be on Air Malta KM138, somewhere over Sardinia, on the way to Manchester. Switch on is at 1:30pm.

In the meantime, the bump where the implant is has gone down to an extent that it literally feels like a normal skull protusion. The scar has healed completely and it seems to be fading away, even. Tinnitus is still blaring away merrily. Sounds vaguely like Arabian music now.

Silence is such a drag... I can't understand how snakes don't get fed up!

2 weeks after cochlear implant...

Or thereabouts... actually it's 2 weeks since I was admitted at hospital. 2 weeks ago right now we were frantic trying to see whether I would actually be admitted in hospital or not, as a bed wasn't available at this point in time.

So far, I've been OK, I'm back at work again. Sometimes I get a little tired (yesterday was my first day back at the office and I found it quite tiring) and I've had a slight dizziness on 2 occasions (today included) but barring that, I'm fine. Tinnitus is somewhat louder than usual, but sometimes I wonder whether it is happening because I do not have a hearing aid to drown out the noise. Who knows?

It's getting a bit difficult at times to cope with not hearing anything. I'm OK with it all but I'm finding time moving along quite slowly. I think being back at work helps somewhat but I can't wait to get the switch on over and done with and our lives back.

Mandy's much better now - she was sick last week, all the stress and worry and back and forth was too much for her and she came down with every bug on the planet aside from HN51! Maria is not so obnoxious anymore as she's got her cycle back into operation, she's going to summer school and playing with her friends and in general has has the little monsterness squeezed out of her.

Now I have to book a blasted hotel (as usual there's a complication involved!) as the Ibis where we wanted to stay doesn't have availability for a particular night.

Back in Malta

We're back home again! I couldn't update my blog as I had some internet problems (subscription ran out while I was away) but anyway, here's the update. I'm amazed that I recuperated from the cochlear implant surgery so quickly. I was a bit woozy for a few days, as I described previously, but all in all I've managed fine. I just got a little tired somewhat faster than normal, but all in all, I'm doing great.

We visited Fleetwood, where took in an outlet village over there and did a substantial amount of shopping (!) Although Mandy didn't let me buy the really cool bottle opener (because it cost Stg 18) not the grill I wanted to buy (Stg 20) - she doesn't understand/appreciate kitchen gadgets. I guess you've got to be a guy to do that. We also went around Cleveleys which is a small, pleasant town. There's not much there really but it's so quiet and relaxing, close to the sea. I was fascinated to see the tide coming in very rapidly as that doesn't happen in Malta. Blackpool - as tacky as ever but great fun, was also taken in. I tried whelks which I liked but their texture was a little rubbery for my taste. We obviously also went to Manchester, and spent an afternoon at Salford Quays.

On Tuesday I had an appointment with my surgeon. He checked my wound and pronounced it healed. I was amazed to be advised that I could just go back to normal, just avoiding heavy weights for the time being (which suits me fine - no shopping for me :) ). He was so nice and down to earth, frankly I didn't think he was a surgeon at first as he looked so, well, normal - notwithstanding his obvious intelligence and skill. He was patient enough to explain why my face swelled up (because a second, earth electrode is implanted just above the ear, where the sideburns are). We took a picture with him, and he even suggested that I take a picture of the x-ray which shows the electrodes in place. I obviously accepted, and when I didn't take the picture well he even took it for me himself. A wonderful guy, so if anyone from the UK is due to be operated by Mr M. Neeff (I didn't get his first name) -you're in very safe, capable hands.

We flew back on Wednesday, an exhausting experience as Maria (my little daughter) was a little hyper that day, and the situation in the UK at airports didn't help much. Our flight was delayed and it was 2am by the time we were on the road home to the airport. Luckily my dad arranged for some help for us with suitcases, as a friend of his met up with us and picked up our suitcases for us. As soon as we got home I just couldn't stay awake if you paid me.

The scar is now fully healed, it's a thin, maybe 1-2mm wide scar in the form of a straightened S...about 15 cm long. it is about 1cm away from the natural crease of my ear, starts about 1cm further down from my earlobe and ends about 3cm above the tip of my ear.

The lump where the implant is can be felt very much, though the swelling has gone down over the past few days. Until a couple of days ago I couldn't sleep on the implant side as the sensation of the swelling against the pillow and my skull was, well, strange and unpleasant. I do not have any pain, just a slight twinge every once in a while, which is manageable. I also have a numb point where I believe the scalpel went in, but it's not too bad. All in all, I got off quite lightly. I had a slight numbness in my earlobe but sensation is already coming back over there.

As it is, everything has gone very well, the only difficulty has been, well, being as deaf as a stone. It's hard not hearing anything apart from tinnitus. I feel sort of detached and apart from my surroundings, as if I'm in a glass bowl or in a soundproof room. I've found myself trying to imagine certain sounds such as the water running when I'm washing the plates, or the door closing when I shut it, or my daughter's voice or Mandy's, when the speak to me. I've been getting a little tired due to my total reliance on lipreading, but I'm actually quite surprised I've done so well so far. We'll see on Monday when I go back to work!

That's it for now, so I'm off again to watch the Godfather (my surgery treat from Mandy - collectors' edition!) and to listen to my tinnitus. I'll keep in touch.

Just 2 weeks 5 days to go, can't wait.

One more update

Here we are again! It's 72 hours from surgery and I've improved in leaps and bounds. Last night I had what I can call the first semi night of sleep.. I was having substantial swelling on my face to the extent we got concerned, so we called the hospital and the doctor suggested I take Ibuprofen anti-inflammants.

So I'm much better, but my face still looks weird, my left ear is slightly out of kilter, and it seems to have moved down about 3-4 mm! I look like flopsy the rabbit. I'm getting my strength back to the point I'd say I'm about 80-90% of my usual self, I do get a bit tired though by the end of the day, and since I'm relying 100% on lipreading my mind gets sapped pretty quickly.

I can barely believe it's already 4 days since I was admitted. Considering we haven't been doing all that much over the past few days, it's been a whirlwind. What I felt about the surgery? Well, on the day itself, I felt terrible, I really did. Terrible nausea - threw up about 7-8 times, and the most painful part of it all was actually being injected in the bottom with anti nausea drugs.

I'm starting to feel the internal stitches popping and stretching, which is to be expected as I've got soluble stitches. I have a lovely arch of a haircut, about 1/2 inches above the tip of my ear. The hair is already growing back it will be some time before I can model in Vogue ;)

I am also ashamed to say I *did* find religion when I got to the operating theatre. I was scared. I am not ashamed to say that I've never been so scared in my life. I just found myself doing the sign of the cross and I remember the last things going through my mind was the Hail Mary. A bit hypocritical of me, I know.

I was touched to see that so much of our family and friends prepared get well cards for me. Mandy was super, co-ordinating it all. Ray, Mandy's brother also printed a photo for me of Maria as I thought I wouldn't have a picture of her for hospital.

What was hardest? Leaving my daughter. I can safely say it was the hardest thing I've ever done in my life. I had tears in my eyes at that point - tears of stress, emotion, fear, distress I would say, separation, and the knowledge that I wouldn't be hearing my daughter's voice the 'proper' way ever again. Heartbreaking.

The easiest? Apart from leaving the hospital itself (!) I would say the post-surgery part. I expected it to be much more painful and awful. Mandy took some photos of me and I look terrible but I actually felt alot better than I looked.

Update

I'm now in a position to provide a relatively better update than the one supplied a day or two ago.

On Tuesday I had a scare because in the morning there was no certainty that a bed would be available for me. Finally, at 1pm we called and I was admitted to Bed 24, Ward C in the Head and Neck Surgery Unit at the Manchester Royal Infirmary. I was very apprehensive to say the least. Hospitals are always intimidating and I'm no hero, I must admit.

Anyway the nurse was so nice, explaining the rules and regulations - and I was really upset to hear that visiting hours were 2-8pm, with no exceptions. So effectively this meant that Mandy couldn't stay with me while I was waiting for surgery. Anyway, I settled in for a relatively sleepless night. I woke up in the morning, already somewhat thirsty but not permitted to take anything by mouth.

A lovely doctor came and interviewed me, he was so nice and helpful. He passed me through the surgery and he gave me such an impression of confidence and the feeling that this was all matter of fact and fait accompli. Anyway, I put these horrible sort of bedsocks and disposable undies and a gown on, and settled down to wait. I was very restless, I just couldn't relax. I was told that they would turn up for me at around 10am. I was checked for my vitals - heart, blood pressure etc. All was well. A doctor told me my blood tests and all vitals were fine and all systems were go for surgery and that I was next in line for surgery (only one person before me).

At around 1020, the orderly came and wheeled me into the prep area of the operating theatre. I must admit that at this point I was petrified. You know you're going to be OK but you can't help being scared. I arrived in the theatre area and was greeted by my anaethesist and a theatre nurse, who passed me through the whole process again, the consent, etc. At 1030 I entered the prep area. At around 1035, I took off my spectacles, took a deep breath off and took my hearing aid off. For the record, the last thing I heard with my poor, damaged ears was the anaethesist telling me that all would be OK and that they were injecting me with a muscle relaxant. Very apprehensive, I looked up and started at the soffit ceiling, not quite realising that I was slowly being fed the anaethetic. The next thing I remember was a hodge podge - I was in the recovery area talking to a nurse then I promptly lost consciousness. I came round again terribly nauseous and dizzy.. vomited several times, was coming back and forth from consciousness. I didn't have any pain at that point, just discomfort from the very tight head pack I was wearing.

I was told I was being taken to the ward. I nodded. Fragmented images of being led into a lift.. nausea.. unconscious.. awake again and seeing Mandy's smiling face and my father next to her.. smiled to them both to let them know I was ok.. I drifted back and forth from unconsciousness. Sick again.. a slight pain. Doctor came to speak to us.. couldn't stay awake.. drifted away again.. feel terrible.. pain in the back of my ear.. tautness from the stiches... all OK Ivan, there was full insertion, no problems, otosclerosis was not a serious problem.. happy.. back to the land of nod again...

Woke up again, my father telling me they had to leave, couldn't believe I'd been drifting back and forth for about 9 hours.. tried to eat soup, no strength.. weak, sick.. slept again.. SMS's back and forth to friends and family. Woke again at 1133. Nausea gone, told Mandy I was better. Rested again.. drifted to and out of sleep all night, not quite sleeping, uncomfortable.

Woke again in the morning, a doctor came to see how I was and I was much better. They removed the pack and it was such a relief, had to take 2 paracetamol due to the headache of the tight bandage. Wound seems to have closed nicely. Went for an xray. Tinnitus very very loud coming and going in waves. Too lethargic to care, really. Xray was a bit uncomfortable due to head position, was a bit painful. Went to the ENT ward and to my surprise I found my surgeon hadn't been Mr Saeed but Mr Neeff, a German surgeon. We met up with him and confirmed placement of the electrode was as it should be. A very nice man indeed, very confident and patient. I was sent home after my third shot of antibiotics (couldn't stop going to the toilet because of them). Pain increasing to the point I needed painkillers. Taxi drive back home was terrible, I felt tired and drained. As soon as we got home got invigorated.

that's the first couple of days gone! Oh, switch on is on the 7th September, quite some time away alas

operation a success

i m posting this from hospital. in brief op was a success and full insertion achieved. a bit of pain nothing yoo bad. loud tinnitus though

Last post before we leave

Tomorrow morning at 745am, we leave for what I hope is a new dawn for us, or rather, I would say a sunset to precede a new dawn.

I would be lying if I said that I'm not scared. The operation itself isn't exactly fun and there are risks inherent to any form of surgery, of course. I'm sure things will be ok - I'm just scared of those 2-4 weeks I'll have until I get switched on. I don't know what to expect really.

What am I feeling right now? I'm in a state of mourning, to be quite honest. I'm mourning the loss of the little bit of hearing I have left, I'm mourning the death of my ears so to speak. They were ailing, just like an old man in an old people's home, barely keeping hold onto life, but dammit, they're MY ears, not a robot's. I don't have second thoughts about the operation, not all all... but I just wish I didn't need to have it. I know it sounds like self-pity - but it's not really.... I'm game for anything, but I just wish for something impossible..

I've been trying to save the sound of people I care for in my mind, because I don't know if I will ever hear them in the same way again. I doubt I will actually, for better or for worse. For some reason I feel as if I'm going for a very long trip and might not see people for a long time. Farewells have been awkward rather than positive. Everyone has promised me their prayers and thoughts but for some reason I just wanted to keep the goodbyes short, like when you have a much-loved relative who is going abroad for a very long time.

I'm not particularly religious, and am not inclined to discover religion now that I'm 'in the time of need', but I do very much appreciate people telling me that they will hear Mass for me or pray for me or recite the rosary for me. I feel I've got the virtual support of so many friends and family throughout Malta and in other countries - people I have never met, and indeed might never ever meet.

Mandy especially has provided me with such strength and support through the months.. especially between January and May when I didn't know where I stood.. those were terrible days. To cap it all, the poor girl has her birthday on my op date. Maybe we can celebrate a dual birthday? Anyway. I'm ready for it, so I'm bracing my chin and ready to face the music, so to speak. So pipe on, Mr Piper.. I'm ready.

Cochlear Freedom Mini BTE Further information

The Cochlear Freedom Mini BTE is now available in the United States, so it's a matter of time before it comes to Europe. The differences seem to be more in size (it's about 6mm smaller) and battery usage (it uses 2, as opposed to the 3 used by the Freedom - if I'm not mistaken). However, batteries last a maximum of 4 days as opposed to 5 for the normal Freedom, but it's still cheaper to run in the long run.

Another piece of good news is that rechargeable batteries are also available in the States, for both the standard Freedom as well as the new mini BTE. Apparently you can get up to 3 days of battery usage with rechargeables, which is pretty good. Apparently, batteries hold up to 80% of initial capacity after 365 charges, and 70% after 1000, so I would think they'd need replacing after about 2-3 years. If they're reasonably priced enough then they might just be perfect, cheaper, and no need to carry around loads of battery dials if you're abroad.

No news as to when it will be available in Europe though, sorry.

Sources:
http://www.cochlearamericas.com/Products/19.asp
and
http://cochlearupgrade.com/faq.asp

Scalped!

I just had a crew-cut yesterday.. I look totally different. Between having 2 mm long hair (prison cut so to speak) and using my contact lenses to get used to them (so far so good) I look totally different. Do I like the 'new me'? Maybe.. Mandy does :)