Tuesday, May 31, 2005

Holy Verbosity, Batman!

I just had a look at my Blogger posting stats. These results are way outta date 'cause the latest "recent post" listed on my profile is November 1, 2004 - 7 months ago. I'm not sure how to get Blogger to update more quickly, or if I can set that.

But having said that, the November-era stats read:

On Blogger Since: September 2003
Recent Posts: 25
Avg Posts Per Week: 2
Posts Written: 126
Words Written: 36,837

Even back then, 126 posts (between two weblogs) seemed ridiculously low.

But - 36,837 words? And that was seven months ago?

Holy verbosity, Batman!


Sunday, May 29, 2005

What song was #1 the day you were born?

Okay, only kinda tangentially-related to deafness and hearing, but fun.

What song was #1 on the charts the day you were born?

Me? April 27, 1965:

UK charts: Ticket To Ride - The Beatles

US charts: Mrs. Brown You’ve Got a Lovely Daughter - Herman’s Hermits


Saturday, May 28, 2005

So now we know...

An email friend who is also an MD solves the mystery of the tinny taste I've been getting when scritching my left ear:

There is a very good explanation for the funny taste you get while probing your ear: it goes back to our fishy ancestry when we all had gills.

The three bones in the middle ear cavity were originally part of a bony arch reinforcing one of the gill-slits, just as the mandible and upper jaw formed part of another gill-arch. Associated with each of these arches was a nerve, still in existence but now serving a slightly different purpose. Several of these nerves connected with the tongue, carrying taste-messages.

When the architecture of hearing and chewing was rearranged, as it is in mammals including us, one tiny taste nerve, the Chorda tympani, was left stranded so that it had to pass across the eardrum, pass out through a hole in the temporal bone and into the tongue, where it mediates taste along the edge of the tongue. So when you poke your ear, it irritates the chorda tympani, sending a false signal to your brain.

Don't tell the Creationists about this though.


Shhh. I won't if you don't.

But if you're up for more explanation, why a metallic taste? And why two months after the implant?

Any theories?

Waiting with bated (or, perhaps, baited) breath,


Aah, dammit.

Justin Trudeau got married today.

My mighty heart is broken.


I'm only seven years older than him. And happily married.

It could've happened.


Oh well. I hope he's happy with his beautiful, talented, rich and by-all-accounts very sweet model/tv-host/Holt Renfrew-personal-shopper wife.

I'll settle for voting for him one day in the - hopefully near - future.


Friday, May 27, 2005

Dactylology; and, where the hell are my keys???

Sign language class tonight. We're now considered "intermediate" level and, after getting used to things getting easier and easier, are on a big learning curve again :) .

At this point, we're still learning lots of new vocab, of course; but the emphasis is on a) improving our fingerspelling speed and b) syntax.

Native ASL users fingerspell at a phenomenal pace. Commonly-spelled words - names, for example - are spelled so quickly that they appear to be one sign - a flick of the fingers. "Charles" is patiently helping us speed up both our own fingerspelling and our comprehension of fingerspelled words. Tonight was a typical exercise - we worked on a list of long and relatively complicated words (exercise, immediately, mortgage, dactylology*, calendar). Most of these words have handsigns to express them, but the exercise was in fingerspelling. We practiced them with each other, and then Charles went around the room and fingerspelled them to us, one at a time - first, at a native signers' speed; then, if we didn't get it, more slowly, then more slowly, and so on. When we 'got' the word, we spelled it back. We did pretty darned well - most of us got most of them on the first or second spelling.

The syntax we are learning is key, basic ASL syntax - areas where ASL differs from English syntax, and areas basic enough to everyday conversation that an English signer would need to know the difference. For example, when describing the location of an object, in English you would say:

"The keys are on the second shelf of the bookcase."

In ASL you would sign (roughly):

Bookcase; shelves; second shelf; there; keys.

Or possibly:

Bookcase; shelves; second shelf; there; keys; that shelf; keys. (You basically sign the concept as you need to until the reader 'gets' where the keys are.)

This is very cool and interesting and useful stuff, and while we have indeed hit another steep grade on the learning scale, we can connect what we are learning to practical use, which makes it feel worth the rough sledding.

*dactylology - the study of signing and fingerspelling.


Thursday, May 26, 2005

A tale of one city

I just found out that the planned community of Laurent, South Dakota, has a very comprehensive website.

I note that although Laurent has been covered in the news repeatedly as a "town for the deaf", the website emphasizes that it is in fact planned to be a "town for signers". They're working quite hard to stress inclusion of hearing people.

As I've said before, I wish them well - especially if they are able to stay true to their stated values of diversity and inclusion (read: hearing people genuinely welcome and included). I still have some serious reservations about the economic feasibility, which have been eased somewhat by reading the faq and learning that one option open to residents will be to commute to Sioux Falls or Mitchell, SD, both around a half-hour's drive away. They're also planning on tapping into the local agricultural economy and encourage value-added agri-business for the town. (Value-added agri-business means, for example, turning local organic strawberries into locally-made gourmet organic jam or cauliflower and snowpeas into frozen pasta entrées, that kind of thing - brings in much better profits than selling the raw ingredients.)

It will be really, really interesting to see if this dream can be made a reality.


Wednesday, May 25, 2005

Thinking it over

I'm happy to say that the potential CI recipient I wrote about on Monday did get in touch with me.

I deeply respect her concerns about losing her residual hearing. I wanted to make that clear to her.

We take our senses for granted. We take our mobility, our health, for granted.

We can't help it. It's how we survive in a world full of danger and bad possibilities.

But nobody understands how precious our senses are - even when damaged, altered, failing, trying but not succeeding - until they begin to lose them. Risking losing more in the gossamer-thin hope of gaining more feels like making a deal with ... well, someone dangerous.

I sent her an email about my experience of getting the implant, the good and the bad. I don't think the CI is the right decision for every person. I don't think anyone who is considered a candidate should get one. A lot of people assume that everyone who qualifies would - should - get it. They can't imagine choosing not to.

In the real world, there are many, many factors to be considered.

I feel so privileged to be able to have a dialogue with someone making the decision. She's really done me a huge honour by asking for my input.

She sounds like a strong, smart person. In the end, the good thing is that whatever decision she makes will be, by definition, right for her.


Monday, May 23, 2005

Scared to deaf

I've been feeling sad and frustrated lately, reading one of my deaf mailing lists. A member of the list has been approved by her American insurance company for a CI - a rare enough occurrence, as I understand it - but she is hesitating. She is not profoundly deaf and is afraid of losing the residual hearing in the implanted ear (which is a certainty; the implant will destroy any residual hearing in the implanted ear).

While I was completely deaf when I got the implant - no residual hearing to lose - I really, really understand the hesitation. Every little scrap of sound is so precious when you are deafened, and voluntarily trading that in for potential complete loss is terrifying.

But what is really frustrating me is the way that the deafies and near-deafies on the list are "piling on", discouraging her from getting the implant. One related a conversation he'd had with some anonymous third person, a CI recipient, at a Wal-Mart of all bloody places, who described the CI as "the WORST decision he'd ever made" and who said that it was "useless". "But wasn't hearing your wife's and children's voices a wonderful emotional experience?" our correspondent fluttered - as he knew people and media flutter about such things - and was told that listening to the wife and children's voices was also a huge disappointment because "everyone sounded the same" anyway. The most telling part was relating that the man said that there was nothing his family could say to him that couldn't be said better with their hands, anyway.

It frustrates me because some people on the list are describing worst-case scenarios and almost ... gloating about them. It feels at times as if in relating these stories they are gleeful that those who are... uppity enough to leave the deaf fold are punished by failure in return. God forgive me for thinking it, but it is almost as if some deafies use scare tactics to keep people from leaving "deaf culture".

Part of the problem, I mused out loud to Husband tonight, lies with implant recipients. The most successful of us are all too ready to flee like scared lambs back into the world of the hearing as soon as we "hear" again. Pretend it never happened, pretend you're not deaf, and whatever you do, don't mix with "those people" lest their deafness prove to be contagious and undo the miracle of the implant. That leaves the deaf community largely getting only one side of the implant debate - the negative side.

Some of us gotta start building bridges. Some of us gotta keep learning and using sign language, and keep showing up at deaf events, and keep our membership in deaf organizations, and stay in communication with our deaf friends. Some of us gotta self-identify as deaf people and claim our right to have and share an opinion on deaf issues and insist that our experience is part of deaf culture and legitimate, too.

I emailed the potential recipient... didn't say much, didn't want to be another apostle preaching a position. I just told her I'd had an implant two months ago and if she wanted to talk to someone who'd just had the surgery I'd be happy to talk to her and answer any questions I could.

She hasn't replied :(


We do it all for you :)

I've added something new to the weblog - an email notification service. If you subscribe using the form at left, you'll get a very brief, plain-text email letting you know when the weblog is updated (maximum of one email per day). I know it can be frustrating to check back repeatedly with a blog when the author is too busy to update for a few days.

That's me. I'm Number 233,346,789. I try harder.


So THAT'S what it sounds like.

I finally found the time to go back to the website where "Jeff", a CI recipient, has posted sound files to try to duplicate his experience of hearing with a CI.

First, a key note: Jeff got an implant by a company called Med-El. My implant is an Advanced Bionics Clarion Hi-Resolution implant. In other words, different manufacturers. How much this affects our different results, I can't say.

I'm also unsure how deaf Jeff was or for how long, which undoubtedly affects things. I do know he was hard of hearing and not profoundly deaf, and for some time before the surgery.

I felt that my own perception of sound was not previously accurate enough to try to decipher the .wav files and see how closely they matched my own experience. Now, my comprehension is so strong that I listened to the website .wav files "through the air", through my laptop speakers, not through the "direct connect" cord, to see how it sounded.

It was really interesting. His experience at hookup is completely foreign to me. I never had the "electronic beeps and boops only" phase.

Although now I understand why so many people said and emailed to me, "Don't get discouraged at the first results! It gets better!"

From hookup, my hearing was very much like his experience at three days.

And bottom line - when I listen to his "normal" file - it sounds "normal". Whatever THAT means.


Sunday, May 22, 2005

So, um...

So, um... (scuffs toe in dust) ...

for the last week or so, whenever I put my finger into my left ear (like, as in, to scratch an itch, which is how I initially discovered it), I get a powerful bright metallic taste in my mouth.

And it, uh, goes away, when I take my finger out of my ear.

I just, uh, though I'd share that with you. For the sake of science. Y'know.


The right traveling companion

"Susan Sontag wrote that we all hold dual citizenship in the kingdom of the well and in the kingdom of the sick. Of course, we hope to remain in that first kingdom as long as we can but if - and, inevitably in old age, when - we move on to that other bleaker territory, most of us fervently hope we have the right traveling companion by our sides."
- Judith Timson, writing in The Globe and Mail about Ed Broadbent's decision to retire from politics to be with his wife, Lucille, who has cancer.

Saturday, May 21, 2005

Fine tuning

Another appointment in Halifax yesterday (Friday) to adjust and reprogram the CI processor. We loaded it up with three new programs (I ran through the last three in the first two weeks - hearing too well, I guess) and this time "Helen" also put me in the sound booth and tested my hearing.

My results were, according to her, "phenomenal". I sat in a chair in the soundproof booth facing a large speaker. (Because I have an implant we no longer use headphones, which is how most people are tested for hearing.) Helen sat on the other side of a soundproof glass window.

First she played tones and I raised my hand every time I heard one. Then she read a series of words (her mouth covered by a hand-held screen) and I repeated them.

Then she played a CD of a man speaking sentences. I was to repeat them back. I got all of those correct. Finally she played the same man speaking new sentences with background interference noise. I got all of 'em except part of one sentence. ("She's using her spoon to eat ice cream", he said. "She's using a ... steak... to ... something?" I said. What would one use a steak for? Does she have a black eye? Is she distracting guard dogs?) Out in the tester's area, where Husband was sitting watching Helen conduct the test, she mused to him, "This technology was designed for her."

After the test she showed me my audiogram. I am just below the low edge of the "normal" range of hearing. My audiogram trails off when we get to higher frequencies; I am not hearing those as well, which is a common phenomenon. We'll work to improve my hearing of those frequencies.

"Now, those notes you played," Husband said, "are they pure tones? Or are they modulated?" And they were off on another of their esoteric discussions of sound and sound theory that always baffle and amuse and please me (because I'd hate to think Husband was bored to tears at all these sessions he so patiently attends with me).

But the results continue to amaze and impress my team. In fact, things are going so well that we have the luxury of working on music appreciation in the future. Helen knows how much I love music and she said that I could bring a CD of something I am familiar with to one of our sessions and she would work with me to adjust one of the permanent, final "programs" to optimize my understanding of it. (She told me that, earlier that week, a guitarist who had gone deaf and received an implant had brought his guitar to a session because some of his chords "didn't sound right"; and they adjusted his CI until the chords he knew were correct on his freshly-professionally-tuned guitar sounded right to his now-professionally-tuned-ear.)

We stayed at what has become our favourite Halifax hotel, in the heart of the downtown core (of course). Best part of the trip was the car rental this time; a PT Cruiser Convertible, by far the most fun and drivable vehicle we've rented (identical to this one, actually, including purple paint job :) .) Great handling and just a zippy little drive on the highway, a lot of fun. We were both impressed, both of us being skeptical and having thought of the PT Cruiser as a bit of a ... novelty car. It was even warm enough today to cruise around Halifax with the top down. Much fun!


Friday, May 20, 2005

I do, I sign.

The wedding was wonderful. In the middle of a seasonably chilly, wet, cold and windy spring week, Saturday was unseasonably warm and gorgeously sunny. The ceremony was held in a building on the University of New Brunswick campus at five in the afternoon. Sunlight streamed through the huge windows around the room, which was richly decorated with flowers and tulle and ivy.

"Ariel" and "Charles" did their wedding very much like Husband and I did ours; small, on a shoestring, unconventionally and on their own terms. Ariel's sister was her matron of honour; Charles' friend was his best man. There was a "celebrant" of undetermined denomination, and a sign language interpreter for the large contingent of deaf guests in attendance, and Charles' two daughters, roughly fifteen and nine years of age, looking serious and focused on their tasks (first, handing out programs; later, the older did a reading).

"Ariel" descended the large staircase into the room looking fabulous and glamourous - quite the change from her daily look which could best be described as "healthy, fresh-faced girl-next-door". It was funny - she looked very composed and graceful and formal, but every now and then she would see a familiar face in the crowd and break into her real smile, which made her look much more beautiful.

The celebrant did all the preliminary talky-talk bits and the interpreter followed in real-time with sign language. She was incredibly talented, the best signer I've ever seen. Charles' older daughter read the traditional wedding reading "On Marriage" by Khalil Gibran (this was, of course, interpreted, too).

Charles and Ariel wrote their own vows and exchanged them through sign language while the interpreter interpreted them out loud for the 'hearies'.

Perhaps the best part was that the celebrant - who obviously didn't sign - had learned just enough ASL to be able to ask the key question -"Do you take this man/woman to be your lawfully wedded husband/wife?" both verbally and in sign. It was a wonderful moment - she did it so hesitantly and earnestly, pausing nervously every now and then (those of us who know ASL could practically hear her thinking out loud - "Oh, dear - is 'husband' the one from the forehead or from the chin?") She was slow but she didn't make a single mistake, and the vows were offered in both English and ASL and the "I dos" in sign, and one of the best matches I've ever seen in my forty years was sealed with a kiss.

The reception that evening was multicultural pot-luck, and an eclectic bunch we were - hearing and deaf and the in-between, like me; Ariel's friends and co-workers who had initially come to Canada as immigrants and refugees from countries around the world; Charles and Ariel's families and all the assorted portly aunts and uncles and running children which that entails; a wonderful chaos.

Some couples, you know, are just right. Sometimes two people you know are just so organically well-suited for each other that you shake your head and wonder how they found each other in this insane world. Charles and Ariel are like that. The chances of either of them finding someone else with the same very odd sense of humour are slim enough. The chances of doing so across a huge communication and cultural gulf - Ariel is hearing, and Charles profoundly deaf from birth, and she met him when she signed up for his class as an absolute beginner signer - are astronomical. So this was a very happy occasion.

So my friend & co-worker, and my friend & ASL instructor are at this moment someplace very warm with white beaches and turquoise water enjoying their honeymoon and it's all good.


Friday, May 13, 2005

I'll learn to get by / on the little victories

So this afternoon I got an email from my employers asking if I can increase my hours to 30 per week.

Good news, but it has not come easily - there was a lot of... negotiation... recently, as expectations were adjusted and they had to undestand that while I work hard, they had to accept that a) I was not going to work extra hours for free because of my belief in the cause and b) you don't get 40 hours' worth of output on 20 hours' worth of pay. NGO staff are notoriously vulnerable to abuse and I knew I had to draw some lines. So we've done a little employer-employee dance of push and stand; and today they increased my hours.

I am still looking aggressively at other jobs because it is clear to me that it's time to move on in any case. I want to stay in multiculturalism/immigration and am focusing my efforts on that (happily there is a big push right now in my province to recruit immigrants and/or lure them away from MTV - Montreal, Vancouver and Toronto :) - so there are a number of avenues to pursue.

I'm really excited about going to a very special wedding tomorrow. I don't know if I've actually made this connection in the weblog before, but my co-worker, "Ariel", who helped me so much when I first went deaf, is actually the partner of my ASL instructor, "Charles". Tomorrow, they are getting married.

It's my first deaf wedding and I can't wait to see and hear the vows and to go to the reception. I'll be back with a full report on Sunday or so.

Yvonne - you are a 24-carat gold person and I will email you as soon as I am able. For the moment, just know that your comments lift me up more than you know and I think you are absolutely brilliant for finding a humane solution to what I had begun thinking of as "The Squirrel Portfolio", as if it were a John Le Carré novel.


Monday, May 09, 2005

The Valley

I've tried, from the start, to make this blog as honest and true to my experience as I possibly can. I mean, if I don't do that, what do I have to say that is worthwhile in the first place? Why "blog"?

Yet I find that when things are not going well I am loath to write about it. The reasons are varied and complex.

First, what's the use? There is enough gloom and anxiety in the world without me serving up my teacup-full to the good people who stop by here to keep me company.

Second, how dare I? You have read day after day about the wonderful things that have happened to me - the supportive friends and strangers, the good luck, the excellent health care, the miraculous results... it feels in shockingly bad taste to even feel unhappy or depressed, much less to then whine about it on the weblog.

So, what I do when I am feeling bad is develop a kind of blog-aversion for a few days until it passes. I feel a bit guilty about it because on the one hand, I want to talk about the whole of my experience, warts and all; but on the other I feel it is appallingly self-indulgent to talk about feeling down.

Suffice it to say this has not been a uniformly easy ride. I am in a "valley" at the moment; work is not going well at all, this 20-hour-per-week deal is not working out for me; it's too disjointed and I am too "out of the loop" and the quality of my work is suffering for it.

And of course as soon as your discretionary income shrinks to nothing, that's when all sorts of extra expenses - the new ASL class, weddings, birthdays, Mother's Day, and so on - pile on to make you pull your hair out. The weather is lousy and cold and wet and I have a headcold.

And - and this is the thing that I think is pertinent to this blog - I suspect I am also feeling something a friend warned me about in email - a sort of post-event depression, when a hugely-anticipated and planned-for event (in my case, the surgery and the CI activation) is over and done. Interestingly, nobody on my professional team warned me about it - maybe they're not even aware of it. But one person, in email, mentioned the phenomenon and expressed concern for me, weeks before I hit the 'valley', so when it came, I recognized that is what it is. Which helps a lot, so thanks (you know who you are) . :)

It'll be fine, of course. It's just a bad spell. I am optimistic that I'll find a full-time position, and that in the interim, things will get better at work. I'm figuring out coping strategies to help. The weather will get better, I'll get over the cold, and the general feeling of depression will lift.

I guess I write about it as a bit of a warning for others who'll walk this path behind me. The CI doesn't solve all your problems.

It just makes coping with them a hell of a lot easier than it was before.


Beware! / the floor is slick /

the floor is slick
and greasy
And dangerous…
Get down on all fours to proceed
-- Doc

Written on a scrap of paper above Hunter S. Thompson's desk. Noted by John Cusack on a visit to HST's home after Thompson's memorial service, and mentioned in Cusack's weblog on huffingtonpost.com.


Wednesday, May 04, 2005

Just checking in...

...to say hello. Not much of interest going on right now. I have a cold and feel pretty lousy.

I've registered with the province's "equal opportunities" program designed to help people with disabilities (as well as visible minorities and aboriginals) find work with the provincial government, and am in the midst of preparing resumes and cover letters to send out. Still hate to think about leaving my current, now half-time, employer, but when I saw my first "incredible shrinking paycheque", I realized pragmatism is going to have to rule the day.

Level 5 ASL class is starting next Tuesday! Yay! I can't wait to get back to soaking up new ASL...