But what does it sound like?

One of the most interesting thing about CIs is that nobody who doesn't have one can really know what they sound like. Implant recipients have tried using all sorts of descriptive language to help the rest of us understand what it "sounds like" but the bottom line is, there is no way to really know how a recipient hears sound.

"A Sound Decision" is a website devoted to one man's CI journey. (It's pretty slick and I suspect it was developed by his CI manufacturer, but it is undeniably his story.) He has made a noble attempt to provide a window into what a sentence sounds like normally, then heard through CIs at several stages of the mapping process. The results - which you hearing folk can listen to - are here. I wish I could hear them before I had the operation, which is sort of circular thinking and makes me dizzy.

Clicking on the Journal link also brings up several photos of him pre- and post-op. While he looks remarkably sparky a couple of hours after waking up, the size of that incision is sobering.

It's a good site and worth a poke around if you're curious.

ronnie

Well, there's that to look forward to, anyway.

Brian was kind enough to leave a comment on my last post which notes, "I'd be interested in reading your thoughts about what you expect to happen on March 9 and immediately after: what the doctors are preparing you for, how you're psyching yourself up (or out). Then later--again, if you're up to it--seeing how reality compares to your expectations. This seems like one of those situations where the only thing you can count on is that something surprising will happen."

And that's from someone who knows.

Well, anything for my public :)

Actually this is a very perceptive and timely suggestion on Brian's part because the last few days have been spent trying to find out exactly what kind of condition I am going to be in after the surgery and how soon I can return to work. The surgery date (March 9), as you know, is unexpectedly (but happily) close, and it caught us at work in the middle of planning a conference for March 11-13. I was to give a presentation at the conference - two actually, of an hour apiece, one Saturday morning and one Saturday afternoon - well, to hell with false modesty, the presentation is the keynote of the conference and everything else has been designed around it. So the $64,000 Question was, would I be ready to give two one-hour presentations three days after the implant surgery?

Now, that might seem ridiculous on its face but you have to remember that first, you go home the day after the surgery, and second, I'd been doing a lot of research on this and every website I found in my searches on post-CI surgery recovery said that patients can expect to be back to work "3 to 4 days" or "within a week" of the surgery. It didn't seem too unrealistic to think that I could duck into the conference, do my little hoo-ray sitting down, and duck out again.

But now that I was getting down to the real deal these "3 to 4 days" and "within a week" guesstimates sounded annoyingly vague, even given the difference between individual patients. I wanted more than just third-party ballparks. I wanted first-hand information from people who'd had the surgery.

Besides, it was occurring to me - all these sites with their "within a week"s and their "some discomfort"s were hospital implant program sites and CI implant manufacturer sites. They're the ones that pop up when you hit google looking for info. And didn't they have kind of a ... vested interest in not scaring people off and downplaying the post-op realities?

I managed to find a couple of other weblogs whose authors had already been implanted. I got back in touch with a local woman who Alain the audiologist had connected me with, who is implanted. I asked my late-deafened adults mailing list if those who'd had implants could tell me their experiences. Husband also contacted the CI Implant program in Halifax to ask for more detailed info.

Looks like I won't be doing no presentation after three days. Dr. B. usually recommends a full week off work to avoid infection. Best estimates gleaned from the collective experience of my informants is that on Saturday my throat may still be sore on the implant side (some kind of glandular issue). Swallowing and talking will hurt after the surgery and may still by Saturday. I may still have quite a lot of pain at the implant site although that varies widely from person to person. If I do, I may be taking painkillers which will make me kind of loopy.

Best of all, my head will still be bandaged and my face could be pretty awfully swollen.

The idea, you understand, is to help the delegates coming to the conference, not scare them to death.

So I am making sure my notes are ship-shape and Bristol-fitted and training my co-worker to deliver my presentation.

Turns out I'm not indispensable after all. Who knew?

ronnie

March 9, 2005

March 9.

15 days.

Two weeks.

Just like that.

The phone rings, Husband talks to the nice lady in Halifax, he sits down at his computer, my email icon pops up, and we have a surgery date. March 9, 2005.

What the - what-- Hey, I just --- Whadda, whadda, what about the lineups and the, uh, the waiting lists? What about the ailing health care system, here? Huh? What about those waves of Canadians flooding southward across the 49th Parallel to spend their personal money on health care, the ones the US insurance companies and Ralph Klein are always bitching about? Why is this little red Corvette going so fast?

Once I had a cup of tea and stopped shaking, it was pretty cool, though.

March 9.

ronnie

Diamond bracelets and Rodeo Clowns

I'm sorry for not updating you all sooner - it's partly due to the travel, partly due to the damned computer being in for repairs (fortunately Husband is kind about sharing his laptop which is what I am typing on now) and partly due to everything being so, kind of, overwhelming that I haven't been able to process it all until now.

My appointment was at Halifax's Victoria Health Center ENT unit at 10:00 a.m. on Thursday. I was to be there ten minutes early. To make sure we had no problems, Husband and I drove to HFX on Wednesday afternoon and were at the hospital at 9:30 Thursday morning.

In spite of us being twenty - or, more accurately, 30 minutes early for the appointment, they saw us right away. "Stacy", the Speech Pathologist from the CI evaluation in November, was there. So was a surgeon, Dr. H., and the director of the CI Implant Program, Mrs. W. I liked the look of Dr. H. immediately; he had a very kind face and gentle manner. He appears to be from the Middle East (Husband says he has an accent) and I felt very comfortable with him immediately. He did a number of balance tests and eye-tracking tests with me. Apparently my trained seal act is road-ready because I passed phase I and now was told that THE surgeon, Dr. B., would see me. Heavens. All right.

I liked Dr. B., too. He, for his part, seems to be from the subcontinent (India, probably). (Atlantic Canada has a constant shortage of doctors; they tend to migrate to more glamourous climes, so a higher-than-average number of our doctors are foreign-trained and are recruited to work here. Interestingly my "day job" means that I know the hoops these people must jump through to be allowed to practice in Canada and that I am aware that it is usually the very best and brightest foreign-trained doctors with the highest marks who leave for the west - and are then trained and tested all over again. Sorry for their home countries but it certainly didn't hurt my confidence any.)

Dr. B. ran me through all the balance and eye tracking tests again (these involve, for example, telling me to concentrate on the tip of his nose, then jerking my head to the left or right while I must keep my eyes focused on the nose; standing in place with my eyes closed; marching in place with my eyes closed and my arms out, etc. "Oh dear," I said. "If I'd known I wouldn't have worn heels!"). There were many, many questions, most of which Husband was able to field. Most of the questions involved trying to figure out the source of the deafness. They asked about deafness in the family, about what drugs I'd been taking when it happened, whether my ulcer problem back in the 90s had ever been diagnosed as a disease or a syndrome, whether there was MS in the family...

In the end, Dr. B. said "It is a mystery."

"I don't like mysteries."

Both Dr. H. in his initial consult and Dr. B. in the second talked to me about risks. I made sure that they understood that I understood the very real risks. I told them "Christine", the audiologist at the Nova Scotia Hearing and Speech Centre, had explained them most clearly to me when I'd seen her in November and that I'd done independent research on the internet since then.

I told them I understood about the risk involved in general anaesthesia to start with. That I understood I might lose or irrevocably alter my sense of taste. I could suffer facial paralysis on the implant side. And that in a worst-case scenario, I could suffer a leakage of brain fluid that could require a shunt to be permanently placed in my skull.

We talked about which model I had chosen, what colour I wanted (black, I decided - I hated the medicinal beige and grey and rather than hide the thing decided to embrace a kind of high-tech look) and about which side I wanted implanted. The degree of consultation and choice was phenomenal.

And so, while Dr. B. may not like mysteries, this one wasn't deep enough to put him off the surgery for which I am an ideal medical candidate. And all of a sudden, Husband (who had been jotting things to me on a notebook to facilitate all this discussion), signed the word "paperwork" and everyone was gathering up coats and files and we were going off to Dr. B.'s office.

And then he wrote out a consent form, listing those risks, one, two, three, four. And giving permission for him to do any necessary but unforeseen procedure that might come up while I was under anaesthesia. And while he wrote all that down, it hit me - what I was literally signing up for. For the first time, I was scared of the surgery. I flashed back to other times I'd had surgery - all the other times. How sick and miserable I'd felt. How much pain is involved. "God," I thought. "I'm volunteering to do this again. I'm volunteering - I'm begging - to have them open up my skull. SO MUCH could go wrong..."

All around me everyone was so jovial - Dr. B., Dr. B.'s lovely secretary, Husband, everyone laughing and joking. It was a time for happiness, a quiet sort of elation. I was a good candidate, things were good, Dr. B. was going to help me hear again, Husband was going to get his wife back. And I was half-elated, half-paralyzed with fear.

Of course, when the doctor's outstretched fingers slowly - or maybe it just seemed that way - turned that paper 180 degrees to face me, I didn't hesitate. I'd been waiting a long time to sign on that dotted line. Now, I would just wait for Dr. B.'s secretary to call with a surgery date. They are thinking perhaps May, which is breathtakingly close after all this waiting.

In the hallway outside Dr. B.'s office is a striking photograph of the internal part of the CI I am getting - the Advanced Bionics HiRes Cochlear Implant. This was a close-up photograph of the very end of the implant's "tail", the bit that curls into the cochlea, showing each of the tiny, shiny electrodes strung along their minute, transparent silicone string.

"It looks like a diamond bracelet," I commented.

We embraced on the way to the elevator and that night celebrated in true Maritime style, over Keith's Draught in a Halifax pub. It was a time to debrief, just the two of us, about everything that had happened.

"Whenever I'd get anxious or nervous," Husband commented (during the balance and tracking tests), "'Stacy' would distract me with small talk."

"Huh," I replied. "I was wondering why we needed a Speech Pathologist there. So maybe she was sort of a... a..."

"Rodeo Clown," he finished.

It all seems to have taken so long and yet happened so fast. But with the signature of that consent form, it became real to me. No more hoops. The internal component, they say, has already been ordered and now they will order the external based on my choices.

It is, it would seem, really going to happen.

ronnie

Hoop # 9..

I will be out of touch for awhile as the super-duper gee-whiz impressive Toshiba laptop is in for repairs (rolls eyes) for not one, but two, known issues. Seems Toshiba keeps manufacturing and selling Satellite laptops with both defective cooling fans and defective monitors. Nice. And now I've been told that (probably due to the number of these units which are failing) the parts needed are on backorder and are expected to arrive on March 15. I won't be recommending Toshiba laptops to anyone anytime soon.

But while my road warrior won't be on the road, I will be. I have my consultation with the surgical team on Thursday. Husband calls the Halifax audiologist to ask if there is anything else we need to do on our end before the appointment (I've gotten my innoculations, chosen my CI model...). No, she says, she already "has [my] MRI ready for projection". Now if that isn't a bizarre image... me and Husband and a team of professionals gazing at my semi-transparent head, thrown larger-than-life onto a white screen.

Sis and friends will hold down the fort and amuse the kitties at Casa Ronniecat and I'll be sending regular updates back to them. And to you all, on Friday or Saturday. Wish me luck. I am not expecting any nasty surprises - they've had the CAT Scan and MRI for months, so surely if something stood in the way of successful surgery they'd know before we'd gotten to this point. But it's just when you stop looking for a nasty surprise that you get one, innit?

See you on Saturday.

ronnie

Michael and Me

I bought two DVDs recently, neither of which I'd had any time to peruse until last night. While the movies were about as much alike as chalk and cheese - "Farenheit 9/11" and "Best in Show", unfortunately they do share one disappointing feature - the "special features" (interviews, extra scenes, new footage) in both is not close-captioned. This is not noted on either DVD case.

Why is this allowed? If movies on DVD are close-captioned by law, why are they allowed to sell DVDs on which a significant portion of the material - and indeed, often the very reason people buy the DVD after seeing the movie in theatres - is inaccessable?

In both cases the addition of new material was a significant part of the reason I shelled out $20 for each. Both are labeled "CC" with no indication that the Features are not captioned. I'm considerably pissed that once again, business nickels-and-dimes when it comes to their deaf customers.

I'm going to write letters to both companies (in the case of Michael Moore, who styles himself the voice of the little guy, I'll write him too - the irony is just too rich) but expect little to come of it. While a few hundred dollars shelled out once could make this material accessible to millions of deaf and hard-of-hearing customers on millions of DVDs, they frankly just don't seem to give a damn.


ronnie

Post-traumatic Stress Recorder

I read somewhere a long time ago that there's a psychological phenomenon that sometimes occurs six months after a traumatic or life-altering event - a sort of delayed reaction which can manifest itself in a number of ways.

I suppose it's true. I lost my hearing in June, and in December, I had my own uninvited and not-terribly-welcome delayed reaction. By December, I was thoroughly sick of being deaf. In December, it dawned on me that this wasn't going away. I was going to go to bed every night deaf, and wake up every morning deaf. The ASL, instead of feeling like my friend, had become frustratingly complex. Work was going to be hard and frustrating every single day. It wasn't going to stop. At least, not unless the CI was implanted - surgery. And was tuned. (Repeated trips to Halifax, 4 hours away.) And worked, all of which in this black mood felt unimaginably unlikely and distant.

I had insisted on being relentlessly cheerful and positive. I had counted and recounted my blessings. Immediately after losing my hearing, I had plowed ahead with a positively Pollyanna attitude that "we'll get through it, you betcha!"

By December, I knew what I was up against. I was sick of being cheerful, sick of being positive, and even sick of counting.

I didn't want to go to work. I didn't want to go out. I didn't want to be deaf.

Christmas was a double-edged sword, by which I managed to distract myself, and also remained in a state of low-grade annoyance at the things I had previously enjoyed and was now missing - carols, concerts, the sound of familiar movies. Sis' arrival was wonderful - except that we couldn't have the long conversations I had enjoyed with her the last time I'd seen her. Everything was good - but everything seemed about what I didn't have, as opposed to what I used to have.

I didn't want to be deaf anymore, thanks. I didn't want to work at it. I didn't want every social interaction to be hard. I didn't want to make stupid mistakes at work or have mixups at home based on my misunderstandings. I was tired of appointments and forms and dealing with the employment people who work with us "special" people to get equipment and software for work.

Nobody has offered me counseling at any point during this process. I don't suppose that's so unusual - Canada isn't as therapy-mad as the US. Counseling is the exception here rather than the norm. But I started feeling like I couldn't really cope with this, and I needed help with it.

But what were the chances of accessing a therapist who could even communicate adequately with me, much less one who understood the psychological aspects of what I was dealing with? And who had the energy to start working through the red tape to access one, anyway?

In the last two days, I've noticed a difference in the light here, as I walk to work and walk home.

The colour of the light is different. The temperature is higher. I go to work with my head bare.

Today, my crocuses arrived. The Canadian National Institute for the Blind (CNIB) sells them as a fundraiser. I ordered them, along with most of my office mates, a couple of weeks ago. Today, they are on my windowsill - a small pot full to bursting with sturdy, thick green shoots waiting to explode into blossom.

Next week, I go to Halifax for my evaluation with the surgical team.

Spring is coming, you can feel it now. There will be bad cold snaps and the odd blizzard, but the light lasts longer every day. My black mood is lifting with the renewed belief that no, I can't stand being deaf, I want to stop being deaf. But it might not be forever.

ronnie

Wow! What a great ad! I'm assuming!

Well, the game is just done, son, and already the good people at captions.com have published a list of the companies who did - and did not - close-caption their commercials for the, uh, Super Bowl of Commercials, if you know what I mean.

I've mentioned before that the cost of CC'ing a 30-second commercial is between $200 and $400 US. So, I mean, once you've spent a quarter-million to a million bucks to make an ad, and then another gazillion to air it on the prime broadcast commercial real-estate in America, you're gonna spend a few pence to CC it for the deaf and hard-of-hearing, right?

Heh. Not so much.

Captions.com lists 17 unique brands whose Super Bowl ads were close-captioned. And 32 whose ads were not.

Queerly, there's overlap. McDonald's had one CC'd ad, and two not CC'd. Pepsi had three CC'd ads (four, if you count Pizza Hut, owned by Pepsi), and one not (four, if you count a Frito-Lay ad, a Tostitos ad and a Kentucky Fried Chicken ad - they're all owned by Pepsi.) Annheuser-Busch had two captioned and five not.

For reasons I've already talked about here, I doubt the deaf/hoh are ever going to be a really effective lobby group.

But we're here, we are aware, we are consumers, and we will vote with our dollars.

If you're wondering, here's a quick list of "the good guys" whose ads were all CC'd:

Miller Brewing Co
Ford
O2OPTIX
Bubblicious
GoDaddy.com
Visa
Quiznos Sub
Subway
Cadillac
Qwest Communications
Best Buy

ronnie