Vicki's Vapours

Conversation starters

2010-09-04T12:34:28Z

It’s now over two years since the activation of my cochlear implants. Yay! I am so glad I got them when I did. There are all kinds of reasons people delay getting CIs, but I would not have missed a single, hearing, minute of this period and regret my own lateness to that particular party.

I’ve been thinking recently, not so much how much my hearing has improved in the last year, but of the increased quality of life I’m experiencing because of it.

I’ve said in the past that I am now no longer afraid that someone will talk to me. I may not hear every single thing, but I can be fairly confident that in most cases I’ll catch on sooner rather than later. This is absolutely huge.

I know other hearing impaired and deaf people will understand what I am trying to say about that fear of being spoken to. For someone with a hearing impairment, any situation that requires aural communication can be stressful — to say the least. With my severe to profound hearing loss, I became quite reclusive for some time before I took the plunge with cochlear implants. I started to wonder what the point of socialising was, if all I could do was look intently at people and imitate their expressions when they spoke, and hope it looked like I wasn’t totally stupid. Now, when I recognise the same thing in others (and I do!), I just wish they realised that it doesn’t have to be like that…

If there’s one thing that most of us with cochlear implants have in common, it’s a past of isolation. And the fact that the isolation is in the past.

Flashback

As I type, flashes of recent conversations are passing through my mind. Top of the list has to be when, a couple of weeks ago, I was in my local butcher, Meatlovers Paradise. Love that place! Top quality products and they are so friendly and helpful, nothing is too much trouble, and they greet me by name and chat away with me, taking a real interest. What more can one ask?

As I was being served, a man standing near me turned to me and said hello. I did a double-take — it was someone I used to go out with briefly about three-and-a-half years ago. In fact, the very person who told me about Meatlovers Paradise in the first place, when I was new to the area.

The first thing he said was, “So you had your ears done!”

I enthusiastically confirmed this, while trying to figure things out. Our time together was long before I started the CI process…

“Yes, Marcus was telling me about it,” he said. I must have looked at him blankly because he added, “Marcus. Marcus Atlas. The guy who did your operation.”

I must then have looked at him incredulously and said something really bright like, “Um…?” because he said, with a smile, “I’ve known Marcus for years. We went to school together. I told you that…”

More blankness from me.

“…but you probably didn’t hear me,” he laughed.

Love it. :-)

It’s All Good™!

More than an end to isolation

But just recently I realised it goes much further than being able to communicate again, and not be afraid when someone speaks to me. I realised that I was actually starting conversations, not just with people I know but also with complete strangers. This is something I vaguely remember doing a hundred years ago in another life, but I realised that now I do it all the time. I like people! I find people interesting. I’d almost forgotten that.

Can you imagine forgetting that you like people and enjoy interesting conversation?

In a way, it’s very cheaty. It’s actually easier than it at first sounds. When you start a conversation, you can guide it. You pick your topic, and you look and listen for expected key words and phrases in any responses. But, oh my, to have the confidence to unhesitatingly speak when you think of something to say… That is just amazing. (And it works for telephone conversations, too!)

Recently, I don’t even think twice about opening my mouth around other people. Stopping by the open kitchen to talk about cooking with the owner/chef at a local café restaurant. Talking politics at a boat club with a marine broker (don’t ask!) and waxing philosophical about Slow Food with someone in the supermarket checkout line.

To be able to finally be myself again — a me I’d all but forgotten about — that’s priceless.

Oops! Where did the year go?

2010-07-29T15:55:44Z

I can barely believe how long it is since I've posted here — almost a year! — but it's All Good™. Life is good! I'm (obviously) a year or so older, and frankly, that's the main difference. Really, a year is not such a long time when you're my age — the poor, doddering old thing that I am. I mean, my daughter has just turned 21. That makes me ancient by definition, right?

Gemma spent her 21st birthday in the snow at the top of a mountain in Switzerland. I'm guessing there are worse ways to spend your 21st. (It was certainly a darned sight different to my own.) I picked Gem and her dad up from the airport last night when they returned from their 3 or 4 weeks of holidaying in Europe. Despite the plane being delayed 3 hours and arriving at 1:45am (which added up to a total of 39 hours in transit for them, so was a far worse thing for them than for me) Gem was happy and excited and that's a rather satisfactory thing for a doting old mum to see.

As we were heading back to the car and I was rummaging in my handbag for the parking ticket, my ears beeped. Oops! I'd accidentally pressed a button on the remote control which — uh — controls — my speech processors. This remote control lives in the deep, dark recesses of my handbag. I fished it out (eventually) and reset it.

Wow! Loud noise! Much, much more sound coming from all directions. Double oops, then. I recall the many times recently I've missed hearing softer noises that I normally would hear, such as the "ding" of my iPhone when a text message arrives when it's in my handbag or in another room of the house. I'm guessing that the last time I was in a noisy situation and switched the program over to the one that dulls down background noise so it's easier to focus on speech (probably a week or two previously) I forgot to switch it back again. Sadly, I'd even considered the possibility that this had happened at the times I was actually aware that some sounds seemed a bit muted (or totally absent) and thought that "next time" I was near my handbag I'd check the remote. Then forgot. Oops oops oops oops oops.

Unsurprisingly, I was really struck by the difference in how well I could hear everything after the reset. (Rather handy, given that I had to drive home with an excited chatterbox in the car that I now didn't have to strain to hear.) Duh. Oh well, live and learn!

Gemma and her dad were duly deposited at their home and, after inspecting Gemma's important new acquisitions of a rather gorgeous soft leather jacket from Paris, and some stunning Gucci heels from Milan (while all the time making suitably approving noises as expected of a mother under such circumstances, but as quietly as possible so as to not wake my sleeping son) I returned to my own modest little haven for a wicked, wanton and wondrous BBBB before finally turning out the light around 4:30am.

Ahhhhhhhh. Despite the fact that my kids being older is a poignant reminder that I'm not the spring chicken I once was, there's rather a lot to be said for not having wee bairns underfoot anymore. Besides which, all three kids are really wonderful young people. I wouldn't go back for anything! And in spite of my (rather numerous) "Oops!" moments, I can't help thinking that they, too, ultimately just lead to better things.

The Sexy Red Beast™

2009-08-05T08:49:59Z

I’d idly considered getting a scooter for several years. It seemed like a fun thing to do! Then last year, as I was going through job changes and other stuff, I decided to pursue the dream as a kind of distraction.

As many of you know, I took delivery of a beautiful red Vespa GTS 250ie at the beginning of June. This was a result of months of lessons and overcoming the small-mindedness and petty bureaucracy of the W.A. Department of Planning and Infrastructure (DPI) in order to get my licence. It was also a result of saving and a good deal of help from friends, but the end result is my Sexy Red Beast™ (SRB™) along with a MOMO Design fighter helmet to complete the retro look. (Bonus: the MOMO helmet doesn’t cause problems by moving the magnets of my cochlear implant speech processors either, as all other helmets I tried have done.)

And it was also a result of generous assistance from Ace Scooters. Steve Laing at Ace Scooters lent me a Piaggio Fly 125 on which to have my lessons, and lent both Neil and myself scooters on many a weekend so that I could practise and get some confidence. (It worked.) Steve is extremely knowledgeable and ethical, and has been endlessly patient with a timid scooter newbie like myself. I cannot say enough good things about Steve and Ace Scooters, who helped me well above and beyond the call of duty.

I didn’t actually intend to get a bright red scooter in the beginning. At first, I wanted the GTV in Portofino Green. Loved the soft green with the brown leather seat, and the more retro look of the headlight directly above the mudguard and the analogue dashboard instruments. Then I’d look at the fire-engine red of the Rosso Dragon GTS… hrm… not my style, thought I.

Then, at Easter, the delightful Wanda, aka Scooternut, lent me her Don1 (Don Juan) for the entire weekend. I felt on top of the world riding that scooter — I felt like a million dollars. I wanted a scooter just like it, including the colour. The die was cast.

I rode my new Vespa home in the rain on June 3, 2009. In the 2 months since then, including weeks of nothing but heavy rain, it’s done about 1750km (1087 miles). It is so much fun to ride! With a scooter, I look for reasons to go out, get out and about to places I don’t have to go. With a scooter, I’ll go for a ride just because I can and because it’s fun. And especially when we get outside of the suburbs, the sights and sounds and scents of the surrounds simply cannot be experienced in the same way from inside a car.

I did buy a top-box which I find looks really weird kinda perched there on the back, but without which I can’t use the SRB™ do my grocery shopping. Except when the weather is roolly, roolly miserable, I expect to always choose to ride the SRB™ rather than take the car.

It fills up (and gets about 200km or 125 miles) for around AUD$9 on 98 octane fuel, so why wouldn’t I?

One year on: the difference

2009-07-09T13:39:09Z

Today is the 1st anniversary of the activation of my cochlear implants, which I received on June 26, 2008.

In many ways, I haven’t felt there was much to report in the last several months. I think this is because progress was so dramatic in the first 4 months or so after activation. Even though my hearing has subsequently improved, it has been relatively unnoticeable.

In terms of scientific measurements, tests at a visit to my audiologist 6 weeks ago show that my hearing has continued to improve even since the last tests. The difference was especially noticeable in tests for speech comprehension in noisy situations. (Which are still bad, but at least I heard some things, as opposed to nothing at all before.)

This is particularly good considering that over the last few months, some frequencies have had to be turned down in volume due to the presence of pain at certain levels. One wonders what improvement there may have been if this had not been the case…?

The real-life differences

Scientific measurements certainly have their place, and they have been encouraging markers when actual progress has been imperceptible to me. But the real differences have been lifestyle ones that, when I think back, have been quite radical.

The difference above all differences

The major, major, and did I say major? change in my life has been that I am no longer afraid to talk to people. Yep, I still dread it somewhat in places with lots of background noise, but even that is improved.

Before my cochlear implants, I would face even a trip to the supermarket with deep dread, because — what if the checkout operator spoke to me? I’d watch their faces like a hawk for the question “Cheque, savings or credit?” when I went to pay with my EFTPOS card, but anything further than that I couldn’t predict. In such situations I would either ask and ask for the speaker to repeat (up to 5 times before giving up) or smile and pretend I heard when it was probably pretty obvious to the other speaker that I hadn’t.

Humiliating, either way.

I avoided going out much at all and particularly avoided anywhere there might be background noise.

But when I’m out and about now — I know I may not hear first time, but I do know that I’m going to hear enough to communicate sooner rather than later in most circumstances.

That is just the most amazing thing.

Other important differences

Being able to converse with my kids has been a wonderful thing! Previously, if my youngest son spoke to me as we were driving along, before I could understand what he was saying and reply, I’d have to say, “Wait till I stop, then I can look at you.” Now, I can chat with him as we go. That is just incredible! I can also talk to my oldest son, which I couldn’t do before even face-to-face in a quiet situation, as he doesn’t tend to move his lips much when he speaks.

Professionally as well as socially, I feel I can hold up my end of the conversation and not come out of it appearing to be totally stupid. In the last year or so before I got the cochlear implants I felt my (lack of) hearing was really getting in the way of me being able to be the best I could be, professionally, and now I see those barriers falling with relief as well as satisfaction.

Talking on the telephone is now possible. I do still have difficulty when either the other person or myself are in a noisy place, or when the other person has an accent, or talks very fast. For this reason I avoid answering the phone in general, just in case it’s one of those awkward situations. But if I have to make a call, I can — especially if I know in advance that I’m calling a quiet home or office, as well as the topic of conversation. (Speech comprehension is made so much easier when the topic is known in advance, because you are expecting to hear certain words and phrases without even being conscious of it.)

And of course I do hear all those environmental noises, such as birds tweeting, cars, aeroplanes, emergency vehicles, computers humming, microwaves beeping, telephones ringing, and — a biggie for me — the “Snap, Crackle and Pop” of rice bubbles in the morning when I have cereal!

To sum it up

If I could summarise what cochlear implants have done for me, I would have to say they have ended my isolation. I’ve regained a lot of confidence when dealing with other people. I used to love being around people, used to even be known for my quick wit, believe it or not! (Try being witty when you don’t hear what’s being said!!!) I totally lost that social side of me when I couldn’t hold a conversation and that is now changing.

Drivers' licences, revisited

2009-05-09T21:02:31Z

Well, I finally did get my motorbike licence, but not without its share of dramas.

A kick in the gut

A couple of weeks after the previously mentioned incident, my brother came over to talk about the Perth City Legal website I was developing for his partner Denise, who is a lawyer. While he was there, I opened a letter from the DPI and was totally gobsmacked. I started to read it out loud to Neil and Graeme but couldn’t finish more than a sentence or two as I was too upset.

It basically said that unless I had a medical within 30 days, to ascertain that I was fit to drive, my drivers licence (car and all!) would be revoked. Even if I got the medical certificate, they could still at their pleasure revoke the licence. This was because — get this — I “suffer from cochlear implants”.

Graeme took the letter off me and huffed and puffed about it. He is a hearing aid wearer, and realised that the implications were far and wide for all hearing impaired people Australia-wide. He took it home with him to give to Denise. Denise is a personal injury lawyer but nevertheless has a lot of experience in advocacy.

No standards

I explained the situation to a cochlear implant email list to which I belong, and someone (thanks Naomi!) sent me a PDF of the standards adopted by traffic licencing centres Australia-wide.

There is no standard for hearing.

That’s right. You can be deaf as a doorpost and (unless you’re a commercial driver) according to the national standards, it doesn’t matter a jot.

However, the DPI required me to get a doctor to assess me against non-existent standards to determine whether or not I was fit to drive.

Riiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiight.

My audiologist and surgeon both said there were no issues with deaf people driving. Quite the opposite — studies my audiologist has done demonstrate that deaf people are more visually aware, and being visually aware is the important thing when driving.

Denise said I had a good case, even though the “discretionary powers of the Director General [of the DPI] are wide”, and she wrote to them.

But that’s not all…

In the meantime, I went for my motorbike test and failed. (Those wretched figure-Os!)

I was unable to re-book the test for some obscure reason, and was told to phone on the next working day. (It was Friday, so that meant Monday.) Neil phoned for me as I still avoid the phone like the plague, and they told him I couldn’t re-book until I’d had a medical to prove I was ok to drive.

What???? I still had time for that…

Neil was most unhappy and let them know. He’s a great person to have on your side. :-D No one he spoke to had a clue what cochlear implants were. In their infinite wisdom, they apparently had decided it was some kind of disease.

They told him that if I was deaf, I could get a licence — no problem. But because I suffer from cochlear implants, I can’t.

Neil told them that in that case, his advice to me was to go to the licensing centre and take out my speech processors, and say, “I’m deaf!” (Which I am — totally — without the speech processors in.)

Sheesh.

He spent quite some time trying to get some sense out of these people. At one point, the woman he was talking to said, ok she’d remove the requirement for a medical certificate, but leave a condition on my licence that I must wear a hearing aid when driving.

Neil said, “No you will not. She doesn’t wear a hearing aid. She can’t wear a hearing aid!” Around and around.

Until he said he would sue for discrimination and other stuff, and right away they backed off.

How pathetic is that? They knew they didn’t know what they were talking about, didn’t have a leg to stand on, but were sticking to their guns anyway for the sake of petty bureaucracy. But, because they knew they were in the wrong, they backed down at the first threat of legal trouble.

Boo, DPI. Boo.

It’s all good — kinda!

Still, I have my motorbike licence now, and next step is to get myself the Vespa of my dreams!

Getting a drivers' licence as a deaf person

2008-10-25T15:11:30Z

I’ve been tossing up lately as to whether or not to sell my car and buy a scooter. There are pros and cons, but I went to a scooter shop on Thursday and was really, really impressed with the customer focus of these people. Nothing was too much trouble. More on that in another post.

While undecided about whether or not I’d actually get a scooter, it seemed very little trouble, while in Joondalup, to go to the licensing centre to get my motorbike learners’ permit.

One of the questions on the application form was related to physical disabilities, with an option for “Other”. I wrote that I am deaf but am a cochlear implant recipient.

When the girl at the counter saw this, she said she’d just check in her files to make sure that wasn’t a problem. There was nothing in her files about deafness or hearing impairment at all but was that enough for her? Of course not. She had to go and make a fuss. She went away to “ask”, and over ten minutes later returned and said I’d have to go to my doctor and get a letter saying he/she thought it was ok for me to drive.

(Bear in mind I’ve had my car licence for 23 years.)

So I wasn’t a happy chappy and I asked to see the documentation that decreed I should do so. I said, if this is engraved in stone then so be it, but if someone has made an arbitrary decision then I want to know about it.

She disappeared and didn’t return for quite some time. We probably waited there at the counter for half an hour or more in total. At one point, her supervisor appeared and asked for my drivers licence number. I started to seethe, because I’d simply asked to see the documentation that said a deaf or hearing-impaired person was unable to drive, not to have it all checked against my own details. What was a general enquiry had suddenly become personal. WTF?

Eventually someone came and said no I didn’t have to go and get a letter from the doctor (well, what a surprise — there was no rule about that and someone quite clearly had made an arbitrary decision, but I’d made a fuss about it, so…) and I simply had to fill out a form stating that I had this physical condition.

There would be no problem getting my learners permit at all.

Grrrrrr.

I don’t know about you but I’m absolutely gobsmacked and horrified that individual staff should apparently decide that someone who is deaf (albeit with cochlear implants) has no brain and is unable to drive, even though all the documentation available to them says it’s not a problem. But because they personally find it a problem, it becomes a problem — unless, of course, the customer complains loudly enough.

Government of Western Australia — the buck won’t stop here. Although it ended well enough (I have my motorbike learners’ permit) this is a clear case of discrimination.

Shame.

Clink!

2008-09-23T10:22:44Z

It’s time to celebrate!

On Tuesday, 30th September, 2008, I start a new job.

This is really exciting for me as it’s a significant career move, in terms of both career advancement and finances, so naturally I’m pretty happy about it.

I had thought I would be with my employer of the last 12 months somewhat longer — but circumstances conspired to give me reason to hasten my departure, and I landed the new job within days. The way it all fell together was so neat, it had to be right — though I did joke at one point that I thought it would never happen because if it did, it would be too neat!

The new job is an IT Manager role at a private RTO (Registered Training Organisation) which is growing rapidly, and it will be exciting and challenging to set up and manage their IT, web and eLearning strategies, systems and processes.

The company is based in Bunbury so I expect to spend a fair bit of time down there, at least at first. But my own job will be based in East Perth, just one very short block from the river and The Cove — I love that area and will be in heaven after the dull, miles-from-anywhere-nice location of my previous job.

The one downside is that leaving my old job when I did meant I could no longer attend the Web Directions South conference, and the tweets from attendees so far this week have been a tinsy bit painful for me. Ah well.

A brief cochlear implant update

There isn’t a lot to report regarding my cochlear implants. Vists to the audiologist have reduced in frequency though I did have a check-up with the surgeon who — lovely man that he is — was really happy for me that everything was going well. He arranged for me to go back one year post-op and said, “I may not see much of you but believe me, we talk about you a lot in our meetings!”

Life goes on!

Then and now

2008-08-13T07:37:31Z

Last week, during my visit to Roberta, my audiologist, she decided to run a short hearing test to see how much sound my ears can pick up at this point in time, one month after activation. A few minutes in the booth listening to tones emitted from a speaker, and then we were back in her office and she showed me the results.

See for yourself:

Audiogram, August 2008

OK, I know it’s not very clear, so I’ll explain a little. The decibels (measurement of loudness) run down the Y axis and the frequencies (relating to pitch) run along the X axis. The lightly shaded area at the top, between -10dB and 20dB, is considered to be the “normal” range.

Which, in short, means that according to this audiogram my ears are detecting sounds at what Roberta described as “nearly normal/very mild hearing loss” levels!

She then showed me an audiogram from a hearing test conducted during my cochlear implant assessment, in August 2007. See the difference?!

Audiogram, August 2007

I previously had a moderate loss at the very lowest frequencies, which rapidly dropped away to nothing at all in higher frequencies, including most frequencies necessary to understand speech.

Now, my ears are detecting sounds between about 20dB and 30dB on the graph, around or just under the levels of a person with normal hearing. I asked if it would get better over time, but Roberta indicated the 40dB area and said that is where most cochlear implantees are and didn’t seem to think there would be further improvement there for me (though that won’t stop me from hoping. ;-) ) She seemed to think it quite unusual that I’m able to detect the sounds I am just one month after activation.

The reality

Of course, all this doesn’t mean a lot in practical terms right now. My brain is still undergoing re-education, and it will take a while for my speech (and music) discernment to catch up with my actual hearing levels. But Roberta seems quite sure they will.

I’m rapt!

Two weeks after switch-on

2008-07-26T03:32:05Z

What a fantabulous couple of weeks it has been with my “new ears”! No, it’s not perfect, but I’m aware it never will be. However, I already hear noticeably better than before the surgery, so even if improvement stopped right now, I’d consider the cochlear implants a success!

But I’m assured that there will be a lot more improvement so it’s definitely All Good™!

At the clinic

For now, the fine tuning of the map (program) of my cochlear implants and associated hearing rehabilitation is on a weekly basis. So, on the last two Thursdays, I returned to the Lions Hearing Clinic to see my audiologist, Roberta.

I am very well looked-after at the clinic. Everyone is so helpful and genuinely wants me to hear as well as possible. It’s not “just a job” to them.

In the last two sessions we have worked to make sure the sound was more balanced between the two implants and between the individual channels of the implants, and the overall volume has been turned up several steps.

We also started on some rehabilitation exercises and Roberta, after quickly running through a few to find out the level of speech understanding (without looking) I was at, gave me some to take home and do for “homework”.

Homework

I had been interested to know what form these rehabilitation exercises would take. I haven’t done the second week’s homework yet, but in the first week they were very simple exercises (although they will get harder as I progress) of two types. In the first type, the clinician (the audiologist or the person helping with the homework) tells the patient (me!) either a clue topic or a specific phrase, then — without the patient being able to see the clinician’s mouth, the clinician reads several sentences which the patient then has to repeat. In the second type of exercise, the patient is given a list of sentences and when the clinician reads them out, the patient has to identify that sentence on the page.

Andy did the first week’s homework with me and I (predictably) did quite well as I’ve always been good at guessing what people are saying. However, I only actually hear a few words without looking and do have to guess. I didn’t do as well with sentences like, “Children look forward to Halloween in the Fall,” because that is so far from anything I would have expected that there was no way I would have guessed it! Children don’t think much about Halloween here at all — almost no one in Australia does — and nor is Halloween in the Fall — and if it was, it would be called Autumn! I was a bit cross about this — I am not American! Roberta told me the next time I was at the clinic that there is some Australian-based therapy but unfortunately it hasn’t been quite so well thought-out. Blah!

But anyway, before the surgery I could hear nothing without looking at people’s faces and my guessing was done while speech reading, so there’s massive progress there.

The hearing experience

Over the last couple of mapping sessions I have noticed that when the volume is increased, so too is the detail in what I hear. This surprised me, no doubt because that was not the case with hearing aids. If I was hearing muffled sound with hearing aids, turning them up meant I would hear louder muffled sound. It shouldn’t have surprised me though, because those things I now wear behind my ears are called “speech processors” for a reason — they are far more than the mere amplifiers that hearing aids are. It’s just that this is so different to my previous experience.

I walked out of the clinic a week after switch-on and heard a bird tweet for the first time in about 25 years.

I went to work and was putting something in the fridge and someone spoke to me, so I turned to look at her. She looked very surprised and said, “You knew I was talking to you! Before, you wouldn’t have even realised.”

I can now hear the garage door going up and down, and the beeps when the pads on the microwave oven are pressed are quite loud, and I can hear the beeps or pings when the microwave has finished cooking, too. I didn’t even know till now that the buttons on EFTPOS handsets beep. I can hear my kitten meow and can hear her purrs after a fashion (they sound a bit crackly). I couldn’t hear any of these things before.

When I listen to music now, the buzzes and extraneous noises are totally gone (yay!) though I still cannot always make out the tune, and (as with speech) louder is clearer. Every now and then I will hear some instrument or instrumental pattern that I hadn’t previously realised was a part of the music and without fail that puts a big grin on my face! Likewise when I suddenly clearly distinguish words or phrases being sung that previously were incomprehensible mumbles.

Stand-out experiences

One day at lunch, I hadn’t been aware of anyone coming up behind me, but out of the blue I clearly heard a voice say, “Can I get you another glass of water?” I was able to turn around and reply, “No thank you, I’m fine,” without having to ask the person to repeat it. In fact, it is amazing enough that I knew someone had spoken to me at all, let alone heard (yes, heard!) what they said. What a buzz that gave me!

Another day, I was seeing someone out of my office and we were standing in the doorway, talking. Suddenly, my magnet popped off my head and attached itself to the doorframe! After a moment of total shock I had to crack up laughing. It kept me chuckling for most of the day. I told Roberta about this and she was unsurprised, and said that people report their magnets jumping off their heads onto fridges and all kinds of things!

Using my mobile phone

On one occasion, I found myself lost (long story!) and was running very late for a meeting and I was somewhat anxious about it so I phoned the receptionist at work to ask her to pass on a message from me.

Well, that was interesting. I automatically reached up to remove my hearing aid as I had previously heard better on my mobile phone without it than with it. Quite a “duh!” moment as I remembered that things are different now and I’m deaf as a door post without the speech processors! I scrambled for the remote control so I could try switching to T (telecoil) mode if necessary. I had no idea if my mobile phone even had a telecoil. Anyway, I dialed and held the mobile phone up to my speech processor, and the phone started to ring and it was very faint so I switched the telecoil on. Louder — but lots of interference. Blah.

I didn’t hear what the receptionist said when she answered the phone at all so did my usual trick when I don’t hear — talk away and don’t let anyone get a word in edgewise! If they don’t get a chance to speak to me, I won’t mishear! I explained my situation rapidly and did get (or guess!) the “I’ll let her know” when I finished my spiel and then I said thank you and hung up quickly, glad to have that out of the way!

So there was my first telephone conversation post-implant. And I have to say, I’m not in a hurry to repeat it, especially now I know my mobile phone doesn’t work well with the implants. Next time I won’t use the telecoil, that’s for sure.

I told Roberta about this experience and she suggested turning the phone over to speaker phone for now, and said that we’ll “start working on using the phone” in a couple of weeks. I’m looking forward to that in a way, but for so many years I have associated even the thought of using the telephone with such huge stress that I think it will be an “interesting” although exciting process.

In any case, it’s progress! And still all very exciting.

Switched on!

2008-07-09T13:10:19Z

Today, my cochlear implants were activated.

It has been the most amazing day!

The activation process

I met my parents and Neil at the hospital, and we waited together in the waiting room. The others were talking and I sat there in isolation, as usual. The minutes ticked on and we were finally called in half an hour after the appointment time.

However, it was All Good™. The audiologist, Roberta, introduced a man who was with her as Gregor from MED-EL, the company who makes the cochlear implants I have. It turned out that I was the first simultaneous bilateral implantee with MED-ELs that they’ve done. So Gregor had set up a couple of systems for Roberta that apparently would ultimately speed up my appointment anyway.

Roberta explained what was about to happen, then she and Gregor checked the strength of the magnet. They decided it was ok, though later they did have to change to stronger magnets.

We started with the left ear.

First a quick test was run to make sure all the electrodes were working ok. They were! Then, one by one, Roberta activated each of the twelve channels. She slowly increased the volume until I could hear the beep and then continued to increase it until it was at a “loud but comfortable” level.

Just this small exercise was delightful because as we moved along the channels I was hearing the beeps of frequencies it had been many years since I’d heard at all.

Then Roberta activated all of the channels for the left ear at the same time.

There was no overwhelming rush of sound as I’ve read in some other switch-on accounts, but I heard some high pitched tones, then Roberta started to speak. Each word sounded like a high-pitched beep. When I told her so, my words also sounded like high-pitched beeps. Now, I knew not to expect too much at first but I couldn’t help feeling disappointed in case that was as good as it was going to get today…

But Roberta then increased the overall volume gradually and I started to hear some lower-pitched tones too. Eventually I began to distinguish words. That was such a relief and so, so amazing!

We repeated the process with the right ear, and I seemed to have a lot more extraneous “noise”, both high- and low-pitched, with the right ear. But as the volume was increased, the clarity of the words was probably better than with the left ear. Weird how these things work.

Then, Roberta turned both processors on at the same time. After a bit of balancing the difference of volume between the two ears, I was understanding speech at least equally as well as before the implants. I still need to lip-read, and I don’t catch everything, but I can hold a conversation. How amazing is that?

Getting used to sound

In addition, there are other sounds I hear that I didn’t hear before. I noticed the car indicators ticking as I left the hospital — it’s a long time since I heard those! I couldn’t resist putting on a CD as I was driving to work, making sure it was playing a familiar song — but too much, too soon — it sounded awful and far from discerning a tune, I couldn’t even tell that there were notes! The singing voice sounded a bit like an old vinyl record being played slooooooooowwwwwwly. Dreadful! Although I had hoped, I wasn’t too disappointed because I had always known it would be unlikely I’d be able to listen to music straight away.

At work, it was great to be able to converse again, however awkwardly. Just as previously, with hearing aids, I found any conversation stressful but I was so excited about my “new ears” that I chattered away to a few people. Someone commented that I was speaking faster than usual but I told her that was probably just because I was excited! Neil said it is noticeable that I speak more quietly now. Apparently that is a Good Thing™ because everyone could previously hear every single word I said.

Who woulda thunk it?

The weirdest thing was to sit at my computer and click with the mouse — and hear a click! I had no idea that a mouse click actually made a clicking noise — who woulda thunk it?

The sound was to both delight and annoy me all afternoon!

Music

When I left work, I decided to persevere with the music thing, and put the same song on the CD player that I’d tried earlier. Imagine my total shock when the introductory notes filtered through, and then I heard the words being sung. It sounded awful — tinny, with buzzing and beeps that are no doubt a meaningful part of the music but my ears don’t know that yet, and as with hearing aids, I couldn’t understand most of the individual words — but I could hear it! I was fighting back tears as I was driving. I never expected this on the first day of sound!

I tried some of the other tracks and I did have better luck with some than others. Some I still couldn’t make out the tune, even though I knew it. But others sounded relatively wonderful and I was just over the moon.

Totally awed

As soon as I got home I pulled out my violin (I just couldn’t help myself!) which I hadn’t even attempted to play in the last two weeks of silence. I started to play, and that sounded terrible too, of course, yet — it didn’t. Whatever my hearing levels, my fingers and my bow arm know what to do, and I found that if I focussed, I could hear the notes and distinguish the tunes and… I was totally awed at the tones. I could hear the resonance of the vibrato in a way that I don’t remember ever hearing before, though once I must have. I played piece after piece, and despite all the ugly sounds in there too, just loved what I was hearing.

Winding down

Andy and Connor came over for dinner and the conversation flowed smoothly for the first time in two weeks — no need for a pen and paper now! I still do have to look at people’s faces and speech read — I don’t know what they’re saying if I can’t see their faces, but I do at least know they are speaking, which is new to me. I never dared to dream things would be this good so soon.

Andy and Connor left quite early and I was glad because the speech processors had been hurting the still-healing wounds behind my ears for a while, and I really wanted to take them off — even though I was so tempted to take my violin out again. If the musical CD experience was anything to go by, each time I do things it will sound better and better.

To know it can only get better from here is a wondrous thing!

Day 1 back at work

2008-07-07T13:56:28Z

Today I returned to work, 11 days after my cochlear implant surgery. I had expected to go back sooner, but I can’t say I’m sorry I had that extra couple of days off (longer, including the weekend) than planned.

I walked into my office to find two huge, plastic ears on either side of my keyboard. I would have worn them, except that would have hurt my still-healing wounds…

The day was a little bit challenging and frustrating, as expected. Understandably, people were interested, if not concerned, to know how I went with the surgery and recovery. I had to keep saying, “I can’t hear!” More often than not it then became a case of people asking, “You ok?” with a questioning thumbs-up sign. And a nod when I said “Yes, fine thanks!” Not exactly stimulating conversation. :-)

It would be horrible if no one was the least bit interested — but there’s no doubt it was awkward and stressful in a way it wouldn’t have been if I hadn’t been at work! Though of course that could be said of lots of things at work!

However, Neil (my manager), whiteboardophile that he is, was in his element, scratching away at my whiteboard at regular intervals throughout the day. “What are you working on today?” he asked, before I had even logged in to my computer. Hrm…! No really, it was good to have some “conversation”, such as it was. Not being able to communicate isn’t a lot of fun.

I took some time out this morning to go to Charlie Gairdner hospital to get one last staple removed. It was somehow left behind when the GP removed the others on Friday afternoon. What a relief when that was done! It was all taken care of very quickly with no waiting and I was in and out of there in about 5 minutes. Excellent!

Despite the little break, it was still a long day and by afternoon I was feeling somewhat drained and icky and longing to lie down — but then again, I am a bit of a wimp!

I did find it frustrating not to be able to hold a conversation, and what with everything, I wasn’t terribly productive. Fortunately for me, Neil said he was fine with me leaving work earlyish, so it wasn’t as long and trying a day as it could have been.

Only one more work day to get through before activation. I may not be able to understand speech right away but at least there will be sound. :-)

Silence.

2008-07-04T13:13:53Z

Before the cochlear implant surgery, out of all the things I was mildly apprehensive about, probably the stand-out concern was how I’d manage in the two weeks after the surgery, but before switch-on. I knew that in this time I would have no hearing at all.

I am not afraid of silence. In the last few years, I’ve been profoundly deaf without hearing aids anyway. When the hearing aids were out, I had very little sound. I’m used to having my hearing aids out when home alone, both for comfort reasons and because I find it stressful to “sort of” hear noises and not be able to identify them. I would start to worry, and when you start thinking “What if…?” it doesn’t take long to get really scared. Who needs that? So the hearing aids stayed out and what the ear doesn’t hear, the mind doesn’t worry about. :-)

No, it’s not the idea of silence that bothered me: I’m used to that. But I’m also used to being able to put my hearing aids in my ears when I do want or need to communicate with others. I was a bit uncertain how I’d manage for two weeks without being able to communicate aurally.

The reality has been quite interesting. I’ve found I do “hear” sounds. I know I have no hearing, but there are certain times when I expect loud sounds and it’s like my brain is filling in the gaps it knows are there. Sounds like my dining chairs scraping on the tiled floor, or the toilet seat lid banging shut. I’ve learned to anticipate them, and sometimes I could swear I heard them!

Also, my speech. I can’t hear myself! I know I am not talking in a monotone, but how do I know? I can’t hear it. But my brain clearly expects those inflections to be there, and I think my speech sounds pretty normal, except I have no idea of the volume. I’ve been hushed once or twice. :-|

And it was quite funny (to me!) to find myself humming. I can’t hear myself hum, yet I was humming a tune. And I’d bet anything the tune was in tune! Because I could hear it in my mind, and my brain knew what to do. It is so natural for me to hum as I go about daily life.

And communication? Ah. Much as I expected. Family has been really good about writing things down for me and it’s a nice feeling that they want to include me. But there’s still so much I miss out on — even more than “usual”. That is both frustrating and isolating.

Helen Keller, probably the world’s most famous deaf-blind person, said:

“Blindness isolates us from things; deafness isolates us from people.”

The isolation is why I so badly wanted cochlear implants.

However I know well that it’s only temporary so I don’t let it get me down. I am just waiting for switch-on on Wednesday, July 9.

Yesssssssssssssssssssssssssss.

My first week as a cyborg

2008-07-03T15:58:29Z

Well! Thank goodness that’s over!

As you know, I have been hugely looking forward to the implant surgery — not for the surgery itself, of course, but because it’s the first step on the road to hearing again. I knew that Thursday, 26th July wasn’t going to be exactly fun — but there was never a moment I even wished I didn’t have to go through with it. I know cochlear implants will be life-changing for me, and it’s not like there was any choice — well, no palatable choice, anyway, when the only alternative was to go totally deaf.

So, here I am, one week after surgery, and I thought I’d write down my experiences.

Pre surgery

Andy took me to the hospital for 6:30am. I was admitted swiftly, and taken upstairs to the waiting ward, where I was interviewed, weighed, and legs measured. I am cross now that I didn’t get photos of the white stockings and other legging thingies I had to wear to help prevent blood clots — believe me, together with the hospital gown, it wasn’t a good look!

The nurse looking after me was very helpful, and I gave her a prescription the anaesthetist had given me, and in turn she gave me a couple of tablets to relax me. A fellow came in to talk to me, some kind of assistant to the anaesthetist, but I can’t remember what he called himself. He asked a few brief questions, mainly double-checking things I’d been asked before. Then he wheeled me, still on my bed, to the theatre. I asked if he was a good driver and he said no, the trip to theatre was the scariest bit of the whole thing. Riiiiiiiight…

The anaesthetist was waiting in the theatre and he and his assistant fussed around me for a while. The anaesthetist inserted the drip thingummijiggy in my wrist. I would learn to hate that drip thingummijiggy — but I didn’t know that at the time.

Then… I opened my eyes and saw I was in a room with several other beds and some nurses. I saw the time was 12:30pm. I’d been taken into the theatre pretty well spot on 8am. I thought I must be ready to head for my room by now, but it was some time (or so it seemed to me) before I was taken there. Mum told me later it was a total of 6 hours before I was taken to my room, so it’s possible I mis-read the 12:30pm and I was in surgery for much longer than I thought.

In hospital, post surgery

I was a little disappointed to find I was in a shared hospital room, but it was ok as it happened because no one else was in the room, which therefore appeared to be quite spacious. Of course I was dopey and dozy and had an aching head, but on the other hand I was feeling great. It was done. It was over!

I had a whopper of a pressure bandage around my head and between my head and the drips in my wrist and a drip thingy in my foot, I couldn’t get comfortable but the nursing staff were just amazing. They were kind, attentive and supportive and I was never made to feel I was the slightest bit of trouble. If there was anything they could do to make me feel better, then they wanted to do it. I felt almost embarrassed at the attention but at the same time, it was reassuring.

Andy brought the kids in but they didn’t stay long. They had come to see me, so all the focus was on me, yet I couldn’t hear a thing they said of course so everything had to be written down. I felt awkward and strained. Andrew asked me if I wanted to rest so I said yes — which was, of course, true. I was pretty dosed up with drugs (painkillers) at the time. Much as I loved to see them, I preferred to be alone.

Neil from work also came to visit and he was very kind and patient. While he was there, my dinner arrived. Even though I had no appetite (yes this is me we’re talking about, believe it or not!) I tried to take a mouthful but it hurt to open my jaw enough to get the fork in my mouth. So much for dinner!

Later, my parents came to visit too. Then I settled for what was a very long night.

I was in pain – not excruciating pain, but moderate pain, and I was uncomfortable from having to lie on the back of my head without being able to move to either side, and there were regular blood pressure checks, intravenous antibiotic top-ups, painkillers administered — but you know, the absolute worst thing about it was the wretched drip thingy that had been left in my foot. It meant that my search for comfort due to lying on my back was also restricted by my foot, which I couldn’t move much or rotate at all.

Morning arrived and it was a waiting morning. I was awake early, as tends to happen in hospitals, although still very dozy. The surgeon came by at 8am and told me the operation went perfectly. He told me I’d keep the bandaged head for another day and a visiting nurse would take it off the next morning. (The bandage, that is — not the head!) I would be allowed to wash my hair in two more days. Everything was pretty straightforward and it was a matter of waiting a couple of hours while everything was sorted out for me. Then I could go home.

I attended to my toilette and was horrified to brush my hair and have clumps of it come away. I was to discover later that it wasn’t as bad as it seemed, but with my hair also lifted up by the bandage, it seemed short and thin and my initial thought was that it was a good thing I’d planned to get a few inches taken off the length of my hair, because it was going to have to happen now anyway!

The one-eyed monster

It was a real relief to be home, and settled in my own nice, big, soft, comfy bed. But my nightmare began that night. My bandage was becoming increasingly uncomfortable, and on one of the frequent occasions where I woke up in discomfort from lying on my back, and had to take painkillers and get up until the aches and pains eased, I saw that my face was swelling below the bandage. Throughout the night this became worse until my right eye was quite swollen.

I SMS’d Andy at about 6:30am to ask him to call the hospital. Eventually I had an SMS from the visiting nurse saying she’d be around between 7:30am and 8am. What a relief. I was up and about and feeling pretty good except for the pain from the bandage, so I bustled around tidying up about the place until the nurse arrived.

I felt amazing relief when the bandage was finally removed. The nurse warned me that the eye might close completely, and kept in close contact for the rest of the day (Saturday) and, in fact, the whole weekend. My eye did indeed close completely and both sides of my face swelled badly. I was a one-eyed monster and it was a face to scare small children.

I also felt pretty rotten — I think I overdid it, doing housework on my first morning home after surgery! I haven’t had surgery before (other than having my wisdom teeth out when I was 15) so I really had no idea what the journey to recovery would be like. If I felt good, that meant I could DO stuff — right? I was to learn differently: if I DID stuff, I wouldn’t feel good for long!

Dr Atlas had told me not to drive for about a week, but apart from having a swollen face that was definitely not for public consumption for several days, I really didn’t feel well enough to go anywhere anyway. Possibly part of this was tiredness, sleep still being painful and broken. I dozed during the day and the nights weren’t much different.

On the Tuesday, the swelling was mostly down and it was the first day that I didn’t nap during the day. I still had a broken night though, and was pretty tired and not feeling really well by the time I saw Dr Atlas on Wednesday morning for my post-op check-up.

Taste disturbances

Most of my experiences were just par for the course, and the only really disturbing thing amongst it all was the metallic taste I’d experienced in my mouth ever since the surgery. “Taste disturbances” are a known possible side-effect that I had been forewarned about.

Andy had been coming over every night to cook for me. He made some delicious meals! But some foods and drinks now tasted bland and others tasted dreadful. My big concern, however, was that the metallic taste might be permanent: it sometimes is. I was especially worried when I tried a sip of a nice red wine and it tasted absolutely awful.

Two of the great pleasures in my life are food and wine, and this had the potential to become a tragedy! Still — even if my taste was messed up forever, I never for a moment considered the surgery might have been a mistake. If I can, in the future, hear well enough to communicate easily with people, then that is, and always has been, the most important thing.

The post-surgery check-up

My parents took me to Dr Atlas’s rooms and I was glad to have them with me as I, of course, couldn’t hear a word Dr Atlas said. First, he sat me in his special chair — the one that looks vaguely like a dentist’s chair. He asked me “What’s been happening?” and I briefly filled him in. He positioned his face quite close to mine, asked me to focus on the bridge of his nose, and keep doing so while he turned my head from side to side. From this exercise, he concluded that my balance was good.

Then he took off the strips still covering my wounds, and looked in my ears. He said everything was absolutely normal and he was pleased.

I asked him about returning to work, and said I’d told my work I’d be returning the following day, a week from the day of the surgery. He shook his head and said, “No. Next week.” So that one was taken out of my hands — I’d been wondering how I’d cope when I was feeling ill just from being up and about for a couple of hours.

He said the staples (staples? First I’d heard of staples!) needed to come out on either Friday, Saturday or Monday. Thinking the earlier the better in terms of my own comfort, I asked Andy to book me in at my GP for that purpose on Friday. That will be a relief…

But best of all, Dr Atlas assured me that my “taste disturbances” would not be permanent. He said they’d likely go within 6-8 weeks. This was great news! I had been very afraid it would be permanent. 6-8 weeks of food and drink tasting icky was manageable, and might even help me to lose some weight without even trying! I say without trying, because — due to knowing that both food and wine won’t taste as they should — I currently have little desire for food and none at all for wine.

I was dismayed that the doctor visit took so much out of me but I slept for a couple of hours after I was finally at home again. Everyone seemed intrigued with my staples, and Andy pretended he was looking behind my ears for bolts. Well, after all, I am technically a cyborg now:

cyborg: a person whose physiological functioning is aided by or dependent upon a mechanical or electronic device.

Today, the final day of my first week as a cyborg, I took it pretty easy, knowing that I had to head over to my parents’ place tonight for my son’s birthday celebrations. By the time they were over, I was pretty tired and drained and desperate to get home again, to bed. But tonight is my last night with the staples and I am hoping that as of tomorrow night, I’ll start getting a better night’s sleep without the tightness of my scalp to bother me. I might even be able to sleep on my side again — who knows?

To sum it up

It’s been a grim-ish week but by no means hellish. I did underestimate how much the surgery would take out of me. It was a major operation that upset my body quite a lot — and heaven knows I’m pretty unfit, too. It took me a while to accept the limitations my body was putting on me but I gradually understood I needed to take things easier.

In all, despite the pain (now almost gone except for the tightness and discomfort of the staples) and the headaches I’ve also been getting, and the inconvenience of people having to write things for me if I am to understand what they say, it has been a very positive experience and I have never for a moment lost sight of the ultimate goal.

Explaining cochlear implants

2008-06-22T11:41:30Z

Thanks to Felicity, I came across this video clip of Michael Chorost, who explains cochlear implants very simply and particularly well:

http://www.exploratorium.edu/listen/lg_michael_video_sub.php

Countdown

2008-06-22T08:12:20Z

The scheduled date of my cochlear implants, June 26, is rapidly bearing down on me. YAY! After months of waiting, it is starting to feel like it might actually become a reality. Will become a reality. In just four days… this time in four days, I will be in hospital, post-implant…!

Pre-implant appointments

Audiologist

A couple of weeks ago, I had a pre-implant appointment with an audiologist at the Ear Science Institute. One of the things we discussed was the choice of speech processors, and the differences between the two on offer. Gawd those Cochlear brand ones are big and ugly. How depressing. The MED-EL brand were still much bigger than a hearing aid, but far more slimline than the Cochlear brand — however they require a remote control for changing any of the settings, which I know from past experience with hearing aids is a darned nuisance. Still, it is a really difficult decision to make. The “man in the street” just doesn’t know enough to judge, in my opinion.

We talked about what to expect from the surgery, including the size of the scar behind the ear, and how much hair would be shaved off. (The shaved area, where the implant sits and where the magnet attaches, is apparently only about the size of a 50c piece. The surgeon mostly cuts immediately behind the ear where there is no hair anyway.)

I was given documents to sign, for me to acknowledge that I understood what was going to happen relating to the surgery, as well as afterwards. When I read the document about expectations of the outcome of the implants I smiled wryly at the audiologist and said, “It paints a grim picture, doesn’t it?” It included such encouragements as:

The rhythm of speech will be easier to detect and you will be able to tell the difference between long and short syllables;
You should be able to learn to control the level of your voice with practice;
You will be able to hear the difference between some but not all voices;
Music will not sound “normal” because the implant processor is designed to transmit speech; and
You may be able to identify a simple song.

The thing is, they need to establish a worst-case scenario because everyone is different and some gain more from cochlear implants than others. That is fine by me.

Switch-on is scheduled for July 9, 2008, and after that I have a couple of months of weekly re-mapping and rehabilitation appointments, petering out over time.

When I saw the scheduled appointments, for the first time I felt that this thing is real. It is going to happen!

Surgeon

A couple of days later, I saw the surgeon, Dr Marcus Atlas. I had been really concerned about this, as I knew I had to choose the brand of implant at this meeting. He is just lovely, and acknowledged how hard it is for the patient to choose — but he is obliged to let the patient know that there is a choice. He said that the MED-EL brand is longer and fits deeper into the cochlea, therefore theoretically offers more frequencies (though in practice this is not always the case) and also rehabilitation seemed faster in patients with the MED-EL brand, and if I was unable or unwilling to choose, that would be his recommendation. Yay! Dilemma over.

Apparently I am to expect to not work or drive for a week due to balance and dizziness issues. Fortunately management at my workplace are being super-supportive.

As I left, I was given a folder with information about hospital pre-admission, blood tests I needed to obtain (HIV amongst other things!), and an appointment with the anaesthetist that I needed to arrange. I went to have the blood tests right away while I was at the hospital, and saw the anaesthetist the following week.

Anaesthetist

The anaesthetist has rooms at the hospital where the implant surgery will take place — St John of God Hospital, Subiaco — and the appointment took 5 minutes, if that. I was asked the standard questions about family health history and my own health. The anaesthetist gave me a prescription to bring to the hospital with me on the day, for an injection to be given to me an hour before surgery. He told me he’d give me further prescriptions before I left the hospital for painkillers.

“Painkillers?” I exclaimed. “No one said anything to me about pain!”

He looked at me as if I was quite mad, started to say something, and thought better of it. :-)

He warned me that I will have tubes and oxygen for 24 hours. My first ironic thought was that I was only in hospital for one night, so as soon as they perceived I was no longer at death’s door they’d chuck me out! My second, far more serious, thought was, “If I am wearing an oxygen mask, how will I eat?!!!!”

I shall let you know my devious ways and means, after the fact!

Now… to wait…