Friday, July 30, 2004

Music for the eyes

Last Friday, my good friend "C" noted that our vacations were going to overlap for a week, and did I want to go out for lunch and then do 'the BAG' and a few other art galleries?

Well, bless her, but her suggestion could not have possibly come at a better time, as I had decided early on to focus on what I could read and see and feel, rather than curling up into a fetal position about what I could not hear, or consider, or understand, or respond to. So a day of galleries was the clear thing.

We had a truly smashing day, 'at least, for my part'... the BAG has not only completely remodeled since I'd last been, but has quietly acquired some wonderful new pieces; a crayon sketch of "Leda" by Matisse; two Warhol prints; a sketch by Jean Cocteau; several pieces by Miller Brittain, just smashing stuff. The current main exhibit is a collection of Dali works from across the country; friends of the BAG will know it has a special tie with Dali thanks to Lord and Lady Dunn arranging for it to be the home of the huge and magnificent "Santiago el Grande".

We also visited Gallery 78 and enjoyed their top-notch collection of Canadian (and largely New Brunswick) artists; Molly Lamb Bobak and Bruno Bobak, William and Tom Forrestall, Mary and Christopher Pratt...

Just truly a wonderful, wonderful day, and a great, if unintentional, reminder of how blessed I still am.



Things have been happening so fast I haven’t even had time to update my weblog about them, and for that I apologize. Believe it or not, yesterday I had my MRI! Quite unexpectedly, on Tuesday, they phoned and said I was scheduled for 11 am Wednesday. I suspect that Dr. H. had requested that I be considered for any spots that popped up due to cancellations or reschedulings.

So off we went Wednesday, and I said to Husband that I was only worried they were going to have to give me a needle in the back of my hand, the CAT scan experience still fresh in my mind (and the tender scar still visible on my hand). And he soothingly shook his head “no”. And walking from the parking lot to the hospital, I said, "Gosh, I just hope I don't have to have a dye thing injected in my hand, or an IV." And he took my hand and shook his head, soooothingly, "no". And while in the waiting area outside diagnostic imaging, I said, “Ooh, I’ve got butterflies... I hope they don’t have to give me a needle in my poor hand!” and he shook his head “no” soothingly. And they called us in and said “Okay, the first thing we need to do is give you an injection of dye...”

But these two ladies were a bit more… observant or attentive, and when I told them about my hands’ poor sad history, they assured me they would do their best to find a vein in my elbow. (I want to make one thing clear – I don’t have a problem with needles per se. Not in the arm or the hip or the butt or the elbow… nowhere. When you’ve been hospitalized as many times as I have, they’re no more a problem than a swat on the bum. But it’s that area – the backs of my hands – which are still in pain today from the hospitals’ habit of finding a usable vein, then using it until it literally collapsed, which gives me terrors.)

And lo! The nurse found a vein on my inner elbow; and it was good. Bless her.

The MRI was a bit more of an adventure than the CAT scan. No jewelry, no makeup, no hair products. You wear a gown rather than your street clothes. It is much, much more claustrophobic than the CT unit, too, a much more narrow tube, and you have a cage around your head holding it in place. (This is a picture of the unit; your head goes inside the white "upside down 'u'" in the middle of the picture; the entire bed slides into the 'tunnel'.) So they do what they can to make it less claustrophobic; there is a mirror, periscope-like, above your head so that you can see the staff in the room outside the unit (and in my case, Husband, who gamely sat at my feet the whole time, although he did have to empty his pockets first, probably so that the magnet didn’t suck his Levi’s off in its quest for his house keys). They also blow a very light, very soft cool breeze through, that passes over the face and body and much reduces the sense of ‘closeness'. But nevertheless, they give you a ‘panic button’ which you are to squeeze if you find yourself freaking out; and the first few minutes were a challenge, until I just got my breathing even.

Although I didn't know it, the behemoth is also apparently amazingly loud as well; it is in a trailer attached to the hospital, and Husband had to wear earplugs to accompany me; and I had airport-style ear protectors on, although in my case it was of course a formality. But I could feel the thing bumping and vibrating and grinding with an enormous energy.

(I should note that there weren't, as far as I noticed, big garish logos all over their machine. But there was, I kid you not, a framed picture of their multimillion dollar baby in the waiting room, apparently courtesy of Siemens, the manufacturer.)

Afterward, the technician showed Husband and I the whole scan, which was just amazing. (Here is what one looks like, by the way, although my nose was much cuter than this guys'.) I now have actual documented medical evidence that I do, indeed, have a brain (or, as Husband marveled admiringly, “Your head is just crammed with brain!” which I think is a good thing). The phenomenal machine can scan the image left to right or right to left; or from the top of the skull to the bottom or vice-versa; or from the front to the back or vice-versa. What an amazing thing, watching your own head appear, layer by layer, image by image, from the base of your neck – there’s your spine, there’s your jaw - all up through your head – oops, there’s the eyeballs! Don’t they look queer! – and then the two lobes of the brain, right to the very top! She even showed us the specific scans they’ll be using – a frontal view about halfway through my head showing both ear canals and the cochleas and so on. So after all the effort, that was a treat and it was nice of her to show us. The staff in MRI are just incredibly cool.

So no more whining about waiting. Now we’ve done all that we need to do to prepare for the trip to Halifax for the evaluation and I just pray that happens fairly soon. By chance (and isn’t it all by chance?) I discovered that a friend of mine, Cam, knows a woman here who had the CI surgery in Halifax; my other contact had it done in Ottawa, so it will be helpful to have their two perspectives. Cam has promised to put me in touch with her. (She had lost her hearing as a child and it was 15 years between her loss and the CI; today she has 80% hearing and can use the telephone. I love these stories.)


Unfortunate Closed-Captioning Cockups of the Day: Special Democratic Convention Edition

The Democratic Convention has brought a veritable snowstorm of gaffes and bloopers. My two favourite so far?


Come on, you can't make this stuff up. And this one, also courtesy, as the former, of CNN:


That doesn't sound very nice at all!



Monday, July 26, 2004

Today is the Last Song of the Rest of Your Life

Hola, amigos!

I haven't written much lately because there hasn't been too much to add... now that we're in the waiting period for the MRI I am just living day to day and working at getting better at communicating.

We talk almost exclusively using sign or fingerspelling at home now, and don't think that I don't know how challenging it is for Husband... it's one thing to take a language class with your spouse, it's entirely another when your 'homework assignment' is to try to use it exclusively for the rest of your life. But he stubbornly tries and tries, reaching for the notebook only as a last resort after multiple attempts show that I am going down an altogether wrong path with the concept he is trying to communicate. I tell him how much I appreciate this and how much it means to me that we are having two-way conversations again - it feels a lot like breathing again after you've stayed underwater too long - but I am not sure he really understands how much I appreciate the effort and that I realize how almost unbearably frustrating it must be for him at times.

I was out with friends the other night and a blues band was playing (yeah, well, life sucks). It was outside so I was getting no "speaker vibe" or anything like that. At one point I asked them what they were listening to, 'cause I was listening to Paul Simon's "The Rhythm of the Saints". I hear music quite a lot and often play through whole old favourites in my head. (Those who know me know what a large influence listening to music had on my life - I was frequently to be seen wearing a walkman, then a discman, never drove without music, and often spent whole evenings just listening to CDs). Then I mentioned that the last song I had heard before I went deaf was Tracy Chapman's "Fast Car" - it happened to be on the car radio as I drove back from that conference in Moncton that fateful weekend.

It's a nice enough song, but like so many other things about this experience, I didn't get a choice about it.

But it got me to thinking and I asked my companions if they could hear only one last song, then never hear music again, what would that last song be?

The answers were interesting. Husband picked "Gimme Shelter". R. picked "Sympathy for the Devil" (two votes for the Stones), and C. picked John Lennon's gut-wrenchingly beautiful emotional cry "Don't Let Me Down".

All good choices, I'd say. As for me, I keep coming back to "A Day in the Life", but the fact is that, even though I asked the question and my friends gamely played along, now that I know what it means to have music excised from your life completely, it's a choice I just can't bring myself to make.

more soon,


Wednesday, July 21, 2004

It's not the landing I mind so much, it's all this falling...

Yesterday I had the CAT scan (yes, I know it's a CT scan; in this house it is and will always be spelled as it is spoke: CAT.); first, I had to get an injection of a dye, which was a truly miserable experience; I won't make you suffer the details, but years of illness have left me with very little in the way of usable veins in my hands and arms, and those that are there are very painful to use.

Then they led me into the Star Chamber. First you lie down on the machine; then they put one of those puffy blue surgical hair-coverings on you (or as they are known in Canada, "le Duceppe". "You want fries with that?" I cracked wise at Husband, who was observing); then they put a fabric helmet on your head over that, kind of like the ones the Mercury astronauts wore under their helmets, remember, the black ones with the white middle stripe? Then they settle your head tightly into a snug little head-cup attached to the bed-part of the whole unit. Then they fasten a strap around your forehead. Then they fasten two more from somewhere behind your ears criss-cross across your chin and fasten them off over your shoulders. Then they wrap a strap across your chin horizontally, right to left, and secure it. Then they put a big heavy lead apron over your shoulders and entire torso. Then, they lean over you and say "Don't move!"

They also tell you to shut your eyes, which makes you think of nothing so much as how much you are not not going to be able to keep your eyes shut.

You are inserted into the machine (whirrrrrrrrrrrrrrrrrrr) and there's a lot of thumping and banging of equipment which feels like being on a Tilt-a-Whirl or a Scrambler only in sloooooooooow motion, for ten or fifteen minutes, and you're done.

I didn't notice it, being a) too wound up and b) still in too much post-venal-assault pain, but Husband told me later the thing was just covered in massive garish "GE" (General Electric) logos. Oh well - their motto is "We bring good things to life" so I suppose it could be worse.

Today we went to see Dr. Henderson (Husband came along; at this point the information at the appointments is getting increasingly complex and, besides the moral support, it is very helpful to have someone who can converse one-on-one with the staff and clarify for me at leisure later). Dr. H. said the CAT scan is completely normal, which will be greeted by a healthy dose of surprise if not outright skepticism from some of you who have known me longer than others.

(No suggestions with regard to the tinnitus, unfortunately. I am still looking into acupuncturists, looking for someone local who is reputable and certified by the Canadian Association; I haven't had acupuncture since I moved here but it was extremely effective for me for both abdominal and toothache pain in the past, and I have found out it is used to treat tinnitus.)

Dr. H. also showed us the letter of response he has gotten from the Coclear Implant Evaluation Unit in Halifax; they agree I'm a very good candidate (yay!) but they want an MRI first (boo!) which has a six month waiting period (BOOOO!) but Dr. Henderson may be able to get me in in two months (yay?). So, in the end, it's still a waiting game.

I am trying so hard not to be impatient but the suspense of not knowing if I am permanently deaf or if this is just a temporary detour in my life is killing me. So far, I have been able to keep the whole thing kind of 'at arm's length' with the thought that it may not be permanent... but I need to know and, no matter what the answer is, the sooner I know, the better.


Monday, July 19, 2004

Holy Domestic Crisis, Batman!

What a Sunday!
Since this blog is for my near and dear ones to keep track of my exciting adventures in the world of suddenly losing one of your five senses, I won’t go into the gory details of a domestic crisis. Suffice it to say that at ten o’clock last night a service van and trailer full of gear were pulling away from our door and we had a brand-new oil tank in our basement. 
That’s life, kids.  One of those things that happens when you're fortunate enough to own your own home. 
Writing stuff down in the little spiral notebook I carry constantly is still easier for us (Husband, close co-workers) than ASL signing, especially since we don’t have that many signs yet; so we have to make ourselves make the effort to stop and sign, instead of reaching for the notebook right away out of force of habit. But we must keep practicing and rely on writing as little as possible because if we don't, we will never learn to sign naturally and easily, which will make writing everything down seem like backbreaking work by comparison.

CAT scan tomorrow!! Husband suggested when they made the appointment that I might get in earlier if we told them we could supply our own cat, but oddly enough that didn’t change things. (I even offered to bring both; they could trade them off, like twin infants in tv shows, and double their on-screen time. No go.)
Wednesday I see Dr. H.; at that time I’ll ask him if he has any clue about when I might be going to Halifax for the evaluation.  I am impatient, but trying not to be. 

Sunday, July 18, 2004

Unfortunate Closed-Captioning Cockup of the Day

Courtesy CTV Newsnet:



Friday, July 16, 2004

Hey, speaking of cancer (we were earlier but it was a false alarm), that's a good segue for me to mention one of the best comics I've ever seen - a graphic novel in progress, I'd call it, done by a guy who I 'know on the net'. It's called mom's cancer and it is brilliant in concept(s), draughtsmanship and writing.
A friend who reads both this blog and (hi, Mike!) noted the similarities, particularly in the early entries to both 'journals'. A lot of trying to see doctors and get help, and when it does happen it's either by sheer dumb luck or someone's kind intervention. I suspect that whatever your malady, that's a story we all share.
Anyway, I challenge you to read mom's cancer and come away unmoved.
I strongly recommend it.

It's noisy, being deaf

Okay, today my tinnitus isn't too bad, so it's a good day to write about it. On days when the tinnitus is bad, it pretty much takes all my ability just to ignore it; writing about it tends not to help me ignore it.
The tinnitus started right after the hearing loss became complete. Up until then I'd never had any of the bells and whistles in my head. It started quietly and has gotten progressively louder. Now it's pretty much the equivalent of having a vacuum cleaner on either side of my head all the time. On a bad day, it reminds me of standing between two jets, although I would wager that someone who actually stands between jets for a living would disagree.
I wonder if acupuncture would help? It's helped me with other things in the past. Otherwise, I can't think of what they can do to stop tinnitus in a deaf person. How weird. I am completely deaf, and all I can think sometimes is how much I want the noise to stop.
I am going to ask Dr. H. about it when I next see him, which is the 21st. On Tuesday, the 20th, I have a CAT scan to see if maybe a tumor is causing this and, if not, if something else is wrong inside my skull. (Just to show what a shallow person I am, it occurred to me what a pain in the ass it's going to be to have to take out all my earrings, which have locking backs - 3 in one ear, 2 in the other - and reinsert them all. I've got MY priorities straight, all right.) 
Anyway, I got some good news today. I saw my family physician about a small mole I had which has recently turned into a larger and differently-shaped mole. (This, I thought, is precisely what I need right now.) Anyway, he looked at it and said, "It's fine. You'll get more of them."
Great! It's not cancer! It's old age!
Of course, both will kill you in the end.

Wednesday, July 14, 2004

My new name

Okay, so I am sitting here at the pub waiting for Husband (he deserves a capital “H”, don’t you think?) and typing away on my Palm Pilot with the help of an infrared keyboard; about 1/3 of the size of a regular keyboard and quite effective. Above my head, on a bar TV, The Simpsons entertains via CC when I glance up. Back at the house is one of two Motorola v101 cellphones we have purchased; these phones are designed with text messaging and ICQ in mind, and have built-in qwerty keyboards. We are waiting for the other to arrive from an Ebay seller.

My sister commented to me early on in an email that I was damned lucky to go deaf in the era of technological marvels I live in and how right she is.

Yesterday I got my deaf name. A deaf name is a single sign that is all yours, rather than fingerspelling the individual letters your name all the time. As Ariel pointed out yesterday, "only deaf can give deaf names!" (Since I am sure most, if not all, of you reading have some understanding of the "Deaf culture" and the "Deaf pride movement" I'll leave exploring that to another post.) Anyway, Ariel, who is, I guess, "Deaf by marriage", gave me mine; it's a combination of the first initials of my 'real life’ name and to my eyes looks a little inelegant but hey, I didn’t get to pick my name the first time ’round either so there you go. But I also got the job of assigning Husband his deaf name. So I thought about it and because he is a musician, I've combined his first initial with the sign for 'music'. It makes for a very attractive sign, if I do say so myself.

I realize that I will have to assign “deaf names” to everyone Husband and I discuss on a constant basis. Bit of a responsibility, that! But I will have some fun with it. There’s got to be some silver lining in all this koff! koff! dark cloud!


Tuesday, July 13, 2004

Two-way comm, or, the fog starts to lift

Today we has our second staff ASL lesson. My mind is overflowing and my right hand is cramped!

Because Ariel is going on vacation next week and because the group chose the option, we have decided to meet at lunch every day this week, not just Monday and Wednesday. Husband is attending these sessions too. So far, if you can believe it, we've covered the alphabet, the numbers from one to twenty, names and introductions, Who/What/When/Where/How, manners (please, thank you, excuse me, sorry, etc.); times and timeframes; and a large number of office-related terms, and a large collection of other words that we learn as they come up in the course of the lesson ("Understand?" "Remember?" "Deaf" "good" "bad" etc. etc.). I probably have a vocabulary of about a 75-100 words now.

Fortunately, ASL is a very practical language, and most signs are related in some way to their meaning; a stirring motion means 'coffee'; two hands miming 'talking' to each other mean "meeting". This helps enormously. There's no way we could've retained such a high level of new words otherwise.

Whew! I know it's pretty overwhelming for everyone but I am really really grateful that I seem to have a knack for it; at least I am not struggling with it as some in the class are. It's a very good-natured class, a lot of smiling and laughing but an undercurrent that this is very serious and we are all trying very hard to learn it. On Monday afternoon I had my first two-way converstation since I lost my hearing, with Ariel and another co-worker. I just can't tell you what that felt like - to make sense of things in real-time with two people!!!

I think it will be harder for my co-workers to remember and use the signs because they won't be practicing them at home; husband and I will be practicing them as much as possible at home so we have an advantage. I have discovered there is some local dialect involved and some signs I got from the internet aren't commonly used here! Go figure... people will insist on dialect, won't they? But that is the advantage of live tutoring - this is where I live and this is the community I must communcate best with.

Thanks to the fact that I speak, husband and I can incorporate sign into our other conversations with friends; soon I will be out of this awful isolation which is only overcome by much nuisance and effort, and communicating in real-time thanks to husband's interpretation. It is a process which has started already.

Would you believe me if I said I can hardly wait?


A day at the lake

Sunday we went to the lake - my in-laws' summer place - for the first time since I lost my hearing.

I was kind of hoping to deal with them in smaller groups, but before that could happen, one of the siblings (five boys! imagine!!!) was heading back home to Ontario after a visit and all the rest were having a mass barbeque to see him off. So husband and I were just kind of plunged into his whole side of the family (including the kids I wrote about earlier) all at once.

I had a brief, three-minute kind of sit-down with the kids when I got there. Their parents had already told them about my hearing loss, which was helpful. I told them the important thing was I could still talk to them, and they could communicate with me by writing things down ("What about 'Conner'?" asked “Celia” with grave concern. 'Conner' is four. "I will just have to read his lips and his cute little face," I said, chucking him under the chin. Conner didn't understand what all this meant but understood that it meant he was cute, so smiled broadly.) I also taught them, on the spot, the "most important signs": the formal (signing each word) and quick forms of "I love you".

I also mentioned fingerspelling and teaching them some signs, which got a hugely enthusiastic response. (I was glad I'd photocopied and brought a bunch of fingerspelling alphabet charts, then.)

We spent the afternoon with them and I had a wonderful time. Celia, the eldest at nine, is a natural communicator; she mimes things (including complex concepts) so well that she practically signs. Not only that, but within a half hour of being given the ASL alphabet, she was fingerspelling whole sentences from memory. (My earlier correspondent was right – I am going to need to practice to keep up with her!!) She is also, for a child of that age, phenomenally patient and resistant to frustration when things aren't being understood, which is in keeping with her nature generally. “Diane”, her younger sister, gets more frustrated, partly because she hasn't got as much writing skill to fall back on when signs fail. Conner, the youngest of the three siblings, just seemed content to accept the fact that I couldn't hear him. “Stefan", at three years the youngest child present and son of another brother, was quite oblivious.

As should be.


Friday, July 09, 2004

Lucky Ducky

So, starting Monday, we start ASL lessons during lunch, two days a week.

Me and husband.

And nearly the whole staff.

And a Board member.

Just when I think there isn't anything left that could surprise me about this bunch I work with, they do something that makes me shake my head. This was all organized without my knowledge until it was a done deal; "Ariel", the co-worker fluent in ASL, offered to hold lunchtime classes for staff and nearly all signed up. In addition, at least one Board member who is a volunteer and has a busy day job is going to join us.

I know it isn't all warm and fuzzy; it's about being pragmatic and about the frustration they're going through having to write everything to me, too. But taking two lunch hours each week of their own time so that they can communicate with me, when most of them could find other ways which would be easier for them, is really something I am amazed that so many of them chose to do. Many of them I don't "work with" as much as socialize with at work because we are on different projects and programs; those must be doing it out of friendship.

All I have been able to think since this incredible support system began springing up around me is, "Lucky. Lucky, lucky, lucky, lucky, lucky. In the face of this shitty thing. Lucky, lucky, lucky."

"You lucky ducky, you."


Deaf vs. Blind, or, Why Does The Government Hate Deaf People?

I am learning a lot about "the deaf" as a group, and some of it is an unpleasant surprise. I am pleased to learn, for example, that when a blind person imports equipment relating to his blindness into Canada from another country, he or she is exempt from customs fees and duties on that item; and appalled to learn that if I order a TTY or a shaking smoke detector from another country, I am not. There appears to be absolutely no reason for this and the CAD is lobbying to change it, but it just seems so boneheaded on the face of it that I fail to see how the situation could have arisen in the first place.

I am very fortunate to have a colleague, "Ariel", whose partner is deaf and has been from birth. For me, having Ariel around has been the equivalent of waking up in a market place in central Africa and wandering around the streets until suddenly bumping into an old friend who has been living there for the past four years. She has been much more helpful than any of the professionals because she understands the reality of day to day living with deafness. She also has her own theories about why the deaf are a particularly poor lobby group (the case above being a good example) and don't get some of the breaks other disabled do.

Deaf people are highly independent. We're independently mobile and highly employable compared to many groups with disabilities. We can easily live alone, take care of ourselves and our children. This means we are, as a group, not a big expense or headache to the government. And the drains are the ones that get the attention.

That high degree of personal independence and mobility while coping in a world that can often seem unfair and uncaring can also make the deaf as a collective a sort of ostreperous bunch to deal with. They tend to be independent and stubborn as individuals (I am WILDLY generalizing here but with Ariel's concurrance) because of the nature of their lives, and stubborn and prickly as organizations. That doesn't win any warm & fuzzy points.

Finally, the deaf are big consumers. (Don't I know it - groan.) We need a lot of special gear to maintain our independence and our employment, which means we're a collective cash cow for equipment and tech manufacturers. Nobody is running out to set up free services and breaks for a lucrative if small market.

An example: a friend asked me in email why we were still using TTY when the obvious answer would be a computer software program that emulated a TTY. The reason? Almost all TTY conversation among deaf people is done through Baudot, which is incompatible with ASCII. Software will not give a computer Baudot compatibility. A Baudot/ASCII modem, or TTY modem, is necessary to do the conversion. They cost more than the TTY units, which at least have the benefit of being TTY-universal and I can a) contact most government offices and b) use a relay operator in emergencies or for urgent messages.

So, he replied, why hasn't some organization set up a server that is a central point where all ASCII could be converted to Baudot and vice versa as necessary to facilitate communication on both ends over the internet? Either for free or as a subscription service?

Well, damned good question. I may have to do it myself :)



Thursday, July 08, 2004

My fingers must've slipped

In an earlier post, I linked to what I described as my favourite fingerspelling chart. It was the wrong link - that one was a link to a colour printable one I bookmarked for the 'littles'.

This is the really neat one that uses photographs, and has animation.


Amusing Closed-Captioning Cockup of the Day

God Bless CC, but especially the stenocaptioners, who are court reporters with special training who make the miracle of live-event CC possible.

Stenocaptioners are capable of writing at speeds of up to 250 words per minute, or even faster in short bursts, and they are the people who make sure that we the non-hearing aren't sitting at the table saying "what?... what?" while everyone else, who has heard Wolf Blitzer announce that the missles have been launched, are under it.

However, stenocaptioners may be heroic figures but they are still only human, and the combination of typing, the complex phonetic-sound-input-to-typed-English conversion process live CC uses, and good old human misunderstanding result in an expected number of errors. What is interesting is how many of them are unintentional howlers.

For example, in a news story about a very bad guy, a repeat sexual offender being released on parole despite every indication that he was unrepentant and would offend again, I learned that:


Bonus points if you know why "Svend" was a particularly unfortunate name to have been mistaken for "served" here in Canada...

(Good news is, Ferrier threatened a reporter's life the very night he was released, was back in a cell before daybreak, and is not contesting that he be sent back to jail.)



Wednesday, July 07, 2004

Learning to Communicate

The first two days of back-at-work went better and worse than expected. Much stuff was easier than I expected - and my sneaking fear that I wasn't going to have anything to do with myself was certainly unfounded. I am overwhelmed with things to do and they’re both good meaty things – a press release and a letter to the editor on an immediate and pressing public issue, letters following up on the recent election, and less meaty things - letters of thanks and expense tidying-up after that conference.

Some people are easier than others to communicate with. (To protect anonymity I am going to refer to all colleagues as “her” in our female-dominated office, although some of the people mentioned are male.) One coworker strongly resists writing; she will say a sentence over three, four, five times while I wait patiently holding out paper and pen. Another is trying very very hard but isn’t good at writing; she writes a word and then tries to ‘fill in’ the sentence with gestures and lipreading. What I must remember is that people – not only in my office where many don’t speak English as their first language, but in any situation – are at varying degrees of literacy and comfort with their ability to write, spell, use grammar and make sentences. So I need to be patient and helpful too and fill in the gaps as much as possible.

I am now beginning what is promising to be a long and groan-inducing process with a provincial government department to get coverage for some of the equipment I will need at work (a TTY for example). I am so looking forward to the excruciating obstacle course of referrals, consultations, approvals, and paperwork which are already being lined up for me to jump over and crawl through to get 50% of my organization’s costs recovered. But I should not complain, because they ARE covering 50%, right? Mustn’t start taking some kind of victim / entitlement attitude.

I am also arranging to take an ASL course but it doesn’t start until August 9 – what a long time to be handicapped in communication! But husband is learning fingerspelling which will be HUGELY helpful especially when driving; he can’t write notes but just fingerspelling one word can put a situation, question or conversation into context. (Here's a link to my favourite fingerspelling chart online.)

We have also learned the signs for “WHO” “WHAT” “WHEN” “WHERE” "WHY" and “HOW”. You can point to a book and you can mime eating but you can’t point to a what or mime a when.

Of course, we have also learned the sign for “CAT", and since a considerable amount of everyday conversation revolves around them, that is helpful too. (“Did you feed the cats?” “Have you seen the cats?” “Did you know one of the cats has in one fell swoop ruined our hundred-year-old dining room table?” [true]) (The link to “CAT” above is a frame direct-linked from the ASL Browser, an online sample from a commercial CD and a great resource.)

My CAT scan has been scheduled for July 20; later than I'd hoped. Maybe the CI evaluation will happen sooner.


Sunday, July 04, 2004

Visiting the folks

Had a really smashing visit with Mum & Dad today, it couldn't really have gone any better... I think they're reassured. I took them some printed material on the cochlear implants as they're not very net-savvy. I explained it in detail to Mum while Dad explained the Citation Coach in detail to husband ;) Quite a little palace he's got himself there, I was most impressed. I am delighted for him; from the time I was a little girl I remember him wanting one of those RVs so badly, and he's finally made it happen. It's a beautiful unit and I hope it gives him thousands of hours of pleasure. (Mum is a bit less of a camper; but if she's got a book and a cozy corner to read it in, she's pretty happy anywhere.)

The only thing I can't for the life of me figure out is where Dad learned to correctly sign "I love you" in full in ASL. I asked husband on the way home - husband, who knows it, didn't teach him. I guess he'll never cease to surprise me.

Tomorrow I am back at work fulltime and in spite of my undeniably amazing support system, I am very nervous. The first few days are going to be quite difficult until we settle into a pattern. One foot in front of the other.


Saturday, July 03, 2004

Family matters.

Good day, friend - well, actually it hasn't been a very good day, I've got a sore throat, muscle aches and giddiness; a review of the info included with my corticosteroid prescription suggests that at least the former two may be a side effect, so following Dr. H's instructions should I have any discomfort, I halved today's pill and will do so tomorrow; if I'm still feeling poorly Monday I'll call his office about whether to stop.

Tomorrow we are driving to a campground in Amherst, NS to visit my mom & dad, who are RVing through Nova Scotia (from Newfoundland). The original plan, made a couple of months ago, was that at least I, and if possible husband, would drive down there on their visit and spend some time with them. Now, the whole hearing-loss debacle has put the kibosh on that; I am no longer comfortable highway-driving alone (while I am quite comfortable driving in-town, a ten-minute cruise to a suburb last week quite frightened me; the thought that the car could be making some awful warning grind I couldn't hear took me hold and shook me quite badly) and husband can't get off work so easily on short notice, being a cog in the Great Wheel of Beaurocracy ;) so we shall settle for a few hours' visit tomorrow instead.

They are naturally worried sick; I have been only able to communciate with them through my remarkable sister, who lives in NF and who has been an absolute tower of strength and wisdom, and a great helpmate to me in these past weeks. There is nine years' age difference between us (she is younger and will always be, dammit!) so we never really got to know each other as kids; but what a joy and privilege to have gotten to know her as an adult! One of the funniest, smartest, most creative people I know, and best of all, someone I can spend hours and hours and hours with just doing nothing and really enjoying it. Sisters by odd genetic chance; but close, close friends by absolute choice, at least for my part. I love her so much. This clever girl sent me an article on cochlear implants a full two weeks ago, when I didn't even know they could treat nerve deafness! (Well, someone in the family had to get the brains; neither brother nor I did!)

I am very much looking forward to seeing mum and dad, if only to assure them that their eldest is fat and healthy and fussy and opinionated and talking too much, as always. I do know that the 2.5 hour drive each way is going to be exhausting, though; and I am back to work fulltime on Monday. What a terrifying prospect! I am scared, I won't lie to you. Helps to know I have this amazing support system beneath my arms, my legs, my feet, bearing me upwards at every step. And that's all I know how to do, is just keep putting one foot in front of the other.

Until I fall over ;)


Friday, July 02, 2004

The Truth About Cochlear Implants, or What I Learned on my Summer UnVacation

I admitted in a post a while back that I had always found cochlear implants (CIs) 'creepy', although I've never had much of a 'thing' with any other physical oddity. (A result no doubt of my many months in hospital, as well as a general occupational and personal attitude of appreciation of diversity.) Well, the good people at my office have given me this week off to try to sort out as much of my personal mess as possible, and part of that has involved taking the time to research the CI in a lot of detail.

Boy, was I stupid.

Most of my inability to accept CIs, I realize, come from the fact that I had the boneheaded (pardon the pun) impression that the external unit sort of 'plugged in' to some kind of socket in the scalp. In fact, the internal unit which is implanted during the surgery is entirely under the skin; the external unit attaches to it with - a magnet!

Well, duh.

In terms of keeping the area clean, safe and healthy, this changed my view of the CI enormously, to say the least.

The device is hugely ingenious and the process, from sound to hearing, works like this:

* a sound is picked up by a microphone that is worn behind the ear (think of an external hearing aid);

* the microphone shoots it via a wire to a little computer which is worn on your belt;

* the computer turns the sound into something your implant can tell your brain to understand, let's now call it an 'impulse';

* the impulse is now shot back up the wire to a transmitter which is attached to your head - and attached, on the other side of your skin, to the implant - with a magnet;

* the transmitter beams the impulse across the skin to the internal implant, which feeds the impulse along a wire curled through the cochlea.

That impulse causes the stimulation of the correct combination of electrodes spaced along the wire - 22 or 24 now, as opposed to one or two in early models - to send your brain the illusion of a reproduction of the sound.

Brilliant, no?

There are lots and lots of good diagrams and descriptions on the web; here are some of the best I've found:

Frontal cross-sectional diagram of an implant

A photo of what the device looks like when being worn

There are also, for the not-faint-of-heart, photos of the actual surgery online. This set is of the surgery being performed on an infant and was pretty alarming when I first saw it. However, I then thought about the relative size of an infant and adult head (interestingly, the cochlea itself doesn't grow much; but obviously the skull and ears do, significantly) and figure that adult surgery wouldn't be, relatively speaking, nearly as invasive.

So, like most prejudices, mine against CIs turns out to be based on misinformation and ignorance. And smartening up about it has opened me to a possibility.

Man, if I learn any more life lessons out of this, I'll be too smart to live with.


One TV Blasting and a Pig Outdoors...

Canada Day was pretty neat but kind of overwhelming. Without discussing it I think we both wanted to make a special effort to go out and get involved in a day that has been traditionally one of the top holidays of the year for us - we both love Canada Day and celebrate it big-time. This year would not be any different.

I had a couple of dizzy spells - the crowds were pretty disconcerting in total silence. I had a really bad moment of cognitive dissonance while watching the Parade as a Scottish Pipe and Drum band passed by; fifty guys and gals blowing puff-cheeked into bagpipes with all their might and wailing away on drums and I suddenly realized how loud it was and I couldn't hear it... very strange feeling, and it made me quite dizzy for a moment. I'd been warned that might happen and of course husband was there for me to hang on to :) .

Just to add another dimension to everything, "the kids" have arrived from Ontario. Husband and I are as close as possible to our nieces and nephews in NB, NF and ON; the three siblings who live in a suburb of Toronto are especially fond of us and we spend a lot of time with them every summer. I have been, in the back of my mind, worrying about what would happen when they arrived to spend the summer here, as they always do; how well will they be able to understand what's happened/happening to me? More importantly, how well will they be able to communicate with me through writing? (The youngest, only four, obviously not.) Will they be freaked out? I'm not sure what if anything their mom and dad, or grandma and grandpa have told them yet.

Anyway, I've ordered a book that's been recommended, One TV Blasting and a Pig Outdoors, which is a boy's story of life with his speaking and lipreading deaf father (in the book, dad went deaf at the age of 3). I have conflicting reviews on whether the father signs in the book, which seems to be a bone of contention for signers, but not much of an issue for me now.

(I researched books about deafness for kids but, for obvious reasons, the protagonist in those books are always either a congenitally deaf child or adult who is competently deaf and who signs - I could find nothing about children living with adults who losing or have lost their hearing, and how that might affect the kid, or the relationship. So I've decided to write one myself. [Seriously - why not have a stab at it?] Agents, get in on the ground floor - my working title is Harry Potter and the Deaf-As-A-Post-Auntie.)

I chose One TV Blasting and a Pig Outdoors because firstly the father is speaking as well as speechreading, so he can speak to the child but cannot hear him, which duplicates our situation; but also largely because it basically outlines the various devices and methods that the dad uses such as a TTY (Teletypewriter) and explains how they work (it even has a glossary of terms in the back), which I hope will help the kids adapt to understanding and using those things too. It should be here in a few days. If it turns out to be useful, I'll get more copies for the other littles in all provinces.

But one correspondent assured me that I would not need a book to help them understand. Kids understand things like that better than adults, he said. "You have a bigger problem," he warned. "Those kids are going to learn how to fingerspell. Better practice!" Eek... knowing my curious bunch, he's probably right... hmm, 'a', 'b', 'c', 'd', 'e' - no, that's 'a' again - 'e'...


Thursday, July 01, 2004

Happy Canada Day!

Happy Canada Day!

I won't take the opportunity to go on a little rant here about how lucky I am to live in a country where the only question I need to ask about a $65,000 USD operation is, "Am I a good medical candidate?". But let's just say it's a little something extra to celebrate on this particular Canada Day.

I just got back from a full day downtown celebrating that "I was born / lucky me / in a land / that I love" and am exhausted, so will post properly tomorrow.

love to all,