Tuesday, November 30, 2004

"I am addressing all deaf citizens of Ukraine. They are lying."

Ukraine journalist signs silent protest

"The sign-language interpreter on a Ukrainian TV station Thursday staged a silent protest against the nation's election by signing, 'They are lying'.
Dmitruk told The Moscow Times Sunday that she felt a special responsibility to speak her mind. 'The deaf don't have any other option for getting television news.'"

What a brave woman. I wonder what's happened to her since.

On a completely different note, we had an odd spell of unseasonably warm weather a couple of days ago which led to thunderstorms overnight as warm air met cold. Think thunderstorms don't keep me up anymore? Think again - the thunder was so loud it kept setting off my front door-knock alarm all night, flashing lights, vibrating bed and all!


Tuesday, November 23, 2004

Nystagmus for Dummies

While I haven't posted lately it hasn't exactly been because things are awfully slow. Just the opposite: I've been busier than all-get-out for the past week. Along with the usual (work, ASL class) my sis has come from Newfoundland to visit and (hopefully) maybe even get some work and settle here. We drove down to Moncton to pick her up on Saturday (you can literally save hundreds of dollars on a round-trip ticket from Newfoundland to New Brunswick by flying CanJet, which flys out of Moncton airport but not, unfortunately, the local one. But it's only a 3-hour drive to Moncton (round trip) so it's worth it for the savings.

It's great having her here. We didn't know each other very well as kids (9-year age gap - she's younger) but I've gotten to know her as an adult and she is a very close friend and a lot of fun to hang out with. It's been really nice to wake up in the morning the past few days and realize she's here and I can look forward to talking with her.

Like any good Newfoundlander, she came bearing gifts; first, a container of my Mom's Corn Fritters (my favourite Mom comfort food, and one which, unlike a few others, I have never been able to duplicate, so they were especially treasured); and secondly, this stunningly awesome t-shirt:

If you're Canadian and you don't recognize the guy in the Warholesque images, shame on you. It's Father of Confederation and Newfoundland legend Joey Smallwood, rendered as if he'd done a sitting for the Neurotic One himself. It's produced by a phenomenally cool Newfoundland company called Living Planet and it is officially my new most favourite t-shirt. Joey Smallwood, pop icon. Who knew?

I'd love to see Sis find work here and settle in her own place here and am going to do my best to make sure that happens. I am lucky that one of my co-workers is a full-time employment counselor and she has agreed to help Sis pump up her resume and point her in promising directions.

Other news: when I filled out the CI Evaluation forms an eon ago, one of the questions was about dizziness or vertigo. I mentioned I'd had a few episodes. At the evaluation they queried me about it again and I described them (kind of a momentary "whoah, almost lost my balance for a second there!" where I grab someone or something and it's over as soon as it starts) but noted I'd probably had few enough to count on one hand. Well, regardless, they wanted me to do a test called an ENG. Sure, whatever. Say you want me to paint myself blue and stand in a corner on my head whistling "The Maple Leaf Forever" for 20 minutes a day. If it puts me a step closer to the implant, I'm happy to oblige.

The appointment and information sheet came from the hospital yesterday. I didn't know what an ENG test (or, as it turns out, the related VNG test) was, but as I read the description I kept getting more and more incredulous until I was literally laughing out loud. Listen to this:

VNG: A pair of goggles is placed on your eyes. Two tiny cameras in the goggles record the movement of your eyeballs called nystagmus. Different types of movements can point to different causes of vertigo. When the eyeballs move the cameras record your eyes and the signal is sent to the computer.

ENG: A set of five disks is taped to the skin around your eyes to measure the movement of your eyeballs called nystagmus. When the eyeball moves the disks pick up the changes and send the signal to the computer.

During the test you will be in a darkened room. you will be asked to look at objects of lights, and move your body and head in various positions.
[That should be interesting. Just how are they going to instruct me to do all this?] Small amounts of cool and warm air will also be run into your ear canal for a short time. The last part of the test may resuult in a short duration turning sensation, but it will only last for a minute or two..."

You also can't smoke, drink alcohol, or ingest caffeine or a list of meds as long as my arm for 24 hours before the test, nor use makeup or wear contacts or scented products during it.

Sometimes I get the sneaking suspicion that somewhere, in some room in Johns Hopkins University Hospital fitted with a foosball table, pinball machine and fridge full of Red Bull, a team of distinguished doctors sits around making up these tests, and the supposed rationales for them, as a kind of reward for long and outstanding service to the field of medicine.


Thursday, November 18, 2004

Talking to Strangers

I got an email from a deaf e-friend today. In the course of the email she mentioned taking her two (hearing) children, six and four, on an outing with her. She said that the kids are very cute, and people often talk with them in public when they're out together, as people will. Waiters or bus drivers or strangers in the mall will bend down and chatter away to the cute kids who will chatter and smile and laugh right back, and mommy is sitting there not knowing a word that is being said to her children. It makes her uncomfortable, she says. Someone is accessing her children and she has no control over the situation, no way to monitor the information they are being given, no way to gauge whether someone gives her a "creepy" vibe. What she wants to do when this happens is take their hands and walk away.

But she knows that's not rational, these people are just nice grownups who think her kids are cute. She wants her children to socialize normally and not to be afraid of people, she said. She tries to remind them to always sign in front of mommy even if you're not speaking to mommy, but they forget.

It will get better, she knows, as they get older and remember to sign and are able to make better judgements for themselves about communicating with strangers or acquaintences. But right now, they are so vulnerable.

Just another piece of the complex patchwork quilt of deafness that had never occurred to me until today.


Monday, November 15, 2004

A little tiny Ferrari in the palm of your hand

"Christine", the audiologist at the Nova Scotia Hearing and Speech Center, is a typical - no, a stereotypical - Maritimes redhead. She is blunt and opinionated and funny and dry. She isn't impressed with doctors (they're "just the Joe Blow that sticks the thing in" - she's the magician that makes it speak to the brain) and lays her expectations of potential patients out in capital letters (literally). You know exactly where you stand with her and what you can do to make her life easier or more difficult.

I don't think you want to make Christine's life difficult.

We arrived right on time for the appointment and they took us in right away. First Christine re-tested my hearing and then we sat together in an office, Christine and I and Husband and a speech pathologist, and we started discussing risks associated with the surgery and how the waiting list works and the different models available to me and what vaccinations I should arrange with my family doctor before the surgery and at some point it dawned on me:

They're approving me.

They weren't talking "if". They were talking "when".

And I felt like I was having a bit of an out-of-body, this-is-surreal experience.

It's not a guarantee. Nothing in life is guaranteed (take it from me) and access to $65,000CAD worth of surgery, equipment and rehab certainly isn't guaranteed. And it's not guaranteed that the unit will work for me, or work well, even if it all unfolds as planned. But they're recommending me.

The next step is a meeting with the surgeons which will probably happen sometime after Christmas. After that the timeline gets fuzzier because there is a waiting list, and children get first priority, because if kids don't get implanted young they never develop language properly. So a child recommended for the implant can jump the queue, which is something I can certainly live with.

The risks associated with the surgery are more serious than I had read but not more serious than I had expected. Most of the websites seem to want to downplay the risks but I always suspected that working that close to the brain had to have some fairly large inherent risks they weren't getting into details about, and that turned out to be true. There's also the risk of facial paralysis or loss of taste on the implant side. There are risks I am willing to take.

They showed me the implants I am to choose from. Actually seeing one - the internal part, especially - was incredible. I mean, holding one in your hand was mind-blowing. These are some high-tech units, little tiny Ferraris in the palm of your hand. The Center uses two manufacturers, each of whom produce two models; the differences are in type of battery, battery cost, life, etc. etc. Performance-wise, they say there is little to no difference between manufacturer or model. I was thrilled to discover that each makes a model which is entirely worn at ear level - the processor and batteries are all built into the behind-the-ear unit, so no battery pack at the waist and no clumsy wire running from your waist to your head. I am nearly 100% certain that is the option I will go with. in fact, I am nearly 100% certain that this is the model I will go with (on the right). Snazzy, huh? The funky colours you see in that picture are snap-over plastic covers which come in a bunch of colours and styles; the basic model comes in black, white, beige, chocolate, and silver. I'm thinking of basic black. Dreadfully modren, don't you think?

We celebrated that night in one of Halifax's fabled pubs and then crashed, completely exhausted from the emotions of the day. Saturday when we got up it was snowing a bit; we did a few things and hit the road about 1 pm. The snow got worse and worse and the road got more and more slippery; and eventually we were in the middle of a chain of cars as far as the eye could see behind and in front, all creeping along at 40kph. Nobody could pass even if they wanted to because the passing lane hadn't been ploughed and was worse than the right lane; except, of course, for the transport trucks that roared past us about a paint-coat's thickness away and obscured our view to white-out and scared the living crap out of us. Poor Husband drove the whole way. By the time we got home, it was nearly 8 pm (that was a nearly 7-hour drive; it usually takes 4). The storm, as it turns out, was a damned doozy that closed the airport, caused dozens of accidents and left 100,000 people without electricity.

But Husband got us through it, although the stress of everything took a physical toll on him, and we are home now, back at work, the whole crazy few days behind us, back to routine, back to normal. Except nothing looks the same to me anymore.

Because they have approved me for the implant.


Wednesday, November 10, 2004

"We gotta get out of this place, if it's the last thing we ever do..."

You probably won't be hearing too much from me for the next couple of days, or at least until Saturday night or Sunday... tomorrow is Remembrance Day in Canada and traditionally a very quiet day, everything closed, a sort of general wistfulness in the air. It is a very low-key day in the ronniecat household.

Then on Friday I am going for my cochlear implant evaluation. When I got the call a month ago it seemed like it would be forever to wait; now it seems the call came just last week. I am excited and very nervous. My sister emailed me after I posted the message in this blog with all the questions about how I should dress and act and what I should say, and said quite correctly that of course the only thing to do regarding a life-change this important is be myself and be completely honest, which I know was really my intent all along.

Please keep your fingers crossed for me. I want this so very much.


Assorted mixed nuts

I was in Canadian Tire (for you poor, poor souls outside 'Canader' who don't have Canadian Tire, it is like if Home Depot and Wal-Mart got together and had a kid who turned out to be a Boy Scout) poking around for Christmas pressies for Husband. I was having a great time with a clerk who had super communication skills. He was awfully keen to sell me CanTire's latest Gadget Just In Time For The Holiday Season, something called the Mastercraft Crank Speed Ratchet.

"Mmm - I dunno," I said dubiously. "He doesn't really have to deal with a lot of nuts..." In an instant, my mind flashed to both his work and our social life. "Wait," I said. "Let me rephrase that.."


Monday, November 08, 2004

Amusing Close-Captioning Cockup of the Day - Special Double Edition

Yesterday during a program about Tom Hanks on CNN, an old friend reminisced about the struggling young actor's early years, married to his first wife.


Like, roaming, snarling, stray vicious poodles?

Then, today, a CNN reporter reported on how eager the US is to ensure that everyone knows the latest assault on Falluja is an Iraqi-driven operation.


Thank god for that. Compared to "Operation Furry", "Operation The Dawn" has, like, balls of steel. Take that, insurgents! No more plush animals for you!



Sunday, November 07, 2004

Jim the Dummy

In the small town in Newfoundland where I grew up, there was a man named "Jim the Dummy".

At least, that's what everybody called him. When I was about six, me and my Dad drove past him in our car as he walked along the road. My Dad waved at him and he waved back. I had never seen him before and I said, "Who's that?"

And Dad said, "That's Jim the Dummy."

Jim the Dummy was around, oh, 50 at that time, I'd guess. He lived with his elderly widowed mom. Jim the Dummy wasn't a dummy, of course. But he was born deaf.

Later, as I grew up, I learned more about him, one of the fixtures in that town of 700. He'd never gone to school and had never been taught to speak if, indeed, he wanted to. He'd never held a real job, although I think he did odd jobs for people in town as a younger man. I suppose he lived on some sort of government income. He never married, and I never saw him at any of the community's social events.

I'd forgotten Jim for years and years, until I went deaf, of course. Now I find I think about him a lot. I don't even know if he's still alive, but he'd be well into his 80s now. But I think about his life and how few options he had, being born as he was into a tiny town when and where progressive ideas about teaching the deaf couldn't have been carried out very well if they'd even been known, and where, with imperfect understanding but perfect innocence, deaf="dumb".

What did he think about, I wonder? Did he know that if he had been born in a different place or at a different time, his life would've been completely different? Was he angry? Did he know everybody called him Jim the Dummy? Did he care? Did it make him mad, or was it just, to him, what he was?

I've mentioned before that after I went deaf, my sister wrote to me how lucky I was to live in the time I do -- in a world of instant messaging, email, voice recognition software, cochlear implants. And how right she is. A newborn infant living in that same town where I grew up would now have access to options and technology that Jim and his mother could only dream of.

Time changes everything - and not just technology. It changes attitudes and language and opinions.

Jim was no dummy.


Friday, November 05, 2004

mom's cancer

Brian has finished his comic - it's a graphic novella, actually - Mom's Cancer. I've written about it before in this weblog, recommending it highly...

I would never compare my experience with Brian's mom's, of course. Suffering a disability in mid-life is hardly the equivalent of essentially having a death sentence read to you, oh, but with a caveat - there is the tiniest chance of survival if you agree to be beaten by more medical sticks and treatments than I can even pronounce. But there was much I could relate to in Mom's Cancer, much any family who has had to deal with the medical system will relate to.

Read Mom's Cancer - it's a page-turner. If you know a publisher, send him or her the url. It's that good. You'll see.


Wednesday, November 03, 2004

Brought to you by The Society For Remembering that The World Doesn't Revolve Around Ronniecat.

You know, for pity's sake, I don't know why I am whinging about how tired I am and how I wish I'd had a break before starting ASL Level II. There are three people in that class giving up their Tuesdays and Thursdays for one reason and one reason only: because I am there. One is Husband, two are friends. (In Level I there were four; a coworker had to skip Level II due to personal commitments but will be back in for Level III)

And they certainly work as hard as I do and feel as tired after a full day's work.

This "quitcher bitchin' moment" has been brought to you by The Society For Remembering That The World Doesn't Revolve Around Ronniecat.

Oh, and the election results SUCK BIG SHARP ROCKS.


Tuesday, November 02, 2004

All your speech are belong to us

Well, we've finished ASL Level I and tonight starts Level II. I would've murdered for a week off between Levels. Wouldn't it be lovely to go home and do nothing after work for an entire week!

Check this out. There's a possibility that I'll be getting my hands on a laptop with voice recognition technology.

These systems use the same technology that is used to assist Closed-Captioning Stenographers. The best-reviewed, Dragon SpeakingNaturally, can learn to read a speaker's voice in just four minutes and after 30 minutes increases to a 98% accuracy rate.

The software isn't that expensive, it's the muscle that it needs under the hood that will make the computer expensive... and it has to be portable, right? Which doubles the cost automatically.

This may be possible through a program that helps fund technology which makes it possible for handicapped people to attain or keep their jobs. I'm working on the paperwork now. Not daring to hope, though, it seems too cool.


Monday, November 01, 2004

That's how the light gets in.

"Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in."

- "Anthem", from the album The Future, Leonard Cohen 1992

hear it