Monday, August 30, 2004

"You can READ in your MIND and SPEAK with your MOUTH!"

What a busy week! Last week I had two group meals with coworkers, a housewarming party for another coworker, and a big family birthday party at the Lake. I gotta tell you, big group events like that with lots of people I don't know all that well are sheerly exhausting for me. Communication is like swimming through glass as it is; the glass gets thicker and more opaque the less regularly you communicate with someone. So while I am very aware of how lucky I am to have such an active social life - the most common word deaf people use to describe how they feel seems to be "isolated" - I feel just exhausted mentally.

Being with the kids at the Lake is interesting and amusing, as always. A four-year-old nephew, "Conner", forgets each time between visits that I can't hear him. Working with him is a fascinating glimpse into the amazing cognitive nature of the human mind at that age. The last time I went out there he was speaking to me and I had to remind him that I couldn't hear what he was saying. He looked disconcerted - then he put his right hand in the air and began making shapes - he'd seen his older sisters using the ASL alphabet to communicate with me and was mimicking them! I was amazed that he'd noticed that, figured out what was going on, and tried to duplicate it.

On Saturday he was speaking to me and I told him to get his Uncle (who is Husband) to write down what he was saying so I could understand it. He wanted to know why and I reminded him again that I am deaf, I couldn't hear him speaking. So if Uncle wrote down what he said, I could read it, and then I could know what he was saying. He chewed on that for awhile and then excitedly blurted out something which Husband wrote for me:

"Because then you can READ in your MIND and SPEAK with your MOUTH!"

"That's right, kiddo," I told him. "You understand. You understand perfectly."


Thursday, August 26, 2004

How much do you suppose it costs to close-caption a tv advertisment?

The number will surprise you. Especially if you know how many aren't captioned.

According to this website, close-captioning a 30-second television commercial costs somewhere from $200 to $400USD.

That figure is borne out at this site, which tracks which companies bother to add that figure to the cost of their Superbowl commercials.

A 30-second spot during the 2004 Superbowl cost $250,000USD. We can pretty safely assume that most of the ads themselves cost at least $750,000 to create, since this is the big game in the advertising big leagues.

That's a conservative estimate of a million dollars per ad.

So who wouldn't shell out a lousy $300 to acknowledge the deaf and hard of hearing audience and potential consumer?

The NFL Network
The NFL Shop
Pizza Hut
Pepsi (Sierra Mist)
Dairy Queen
Quit Plan - stop smoking
3M (Post-It Notes)
Master Card

Now, can you explain to me why I would buy Dairy Queen rather than Burger King, or a Nissan rather than a Honda or Chevrolet, when they won't spend a lousy 300 bucks on a million-dollar ad to acknowledge my existence?

Just asking.


Wednesday, August 25, 2004

Words Fail Me

I got a card today.

From my sister.

Except it wasn't from my sister.

It was from... everyone.

Aunts and Uncles. Cousins and second-cousins. Spouses and kids. Brother and sister-in-law. Nephews. Mom and Dad. Even the family dog.

Everyone back in Newfoundland, from my hometown to St. John's and back, had signed it. There were thoughts and wishes, messages of love and support and strength, promises of prayers being said.

Can you imagine one little piece of paper having such weight? Having my whole family, in the palm of my hands?

I know my sister was the guiding light behind this. No-one else would think to do such a thing. Nobody else would go to the effort of rounding up such a notoriously scattered bunch and have them all sign one piece of paper. Perhaps nobody else would really "get" what something like that means... the power of an object like that. It becomes almost a piece of religious ephemera, like a prayer card or a scapular, an object of protection and strength...

What it did for my heart and my spirit, fifteen years of professional writing don't give me the tools to express.

Thanks, Sister. Thanks, family.

For once I mean it literally when I say: It meant more than you could ever, ever know.


Monday, August 23, 2004

All Your Sounds Are Belong To Us

Well, the cats hate it, that's for sure.

The new alert system is, if not a dream come true (that would be getting my hearing back) certainly a daydream come true. Husband and I agreed that if even one or two of the components worked, the kit would be well worth the cost. Instead, each and every one works like a charm. All together, I now have a:

- smoke detector/fire alarm
- TTY that can be used with any standard telephone
- alarm clock
- room noise alert
- door knocker alert

The latter is the coolest because we have set up the 'control center' in the master bedroom and I was concerned that the signal might not go all the way from the front door to the upstairs bedroom. However, it works like a charm.

Whenever there's an 'event' - someone knocks at the door, the telephone rings, or the alarm clock goes off - my bedside lamp (which is plugged into this system) flashes on and off and a 'bed shaker' (a disc the size of a ladies' compact which goes under my pillow) vibrates very strongly. The central unit also monitors room noise and if there is prolonged loud noise (baby crying, drunken in-laws fighting, cats pulling down a china cabinet), it sets off the alarm (flashing lamp, shaking). By glancing at the Alertmaster, the brain of the whole operation, I can tell whether it's the front door, the phone or the alarm that's going off. For example, in this picture:

there was ambient room noise happening (I was singing "All Along the Watchtower") so the green light is on over "room noise". If the phone had been ringing, there would've been a flashing lamp, the bed shaker would be buzzing, and the green light would be on over the "phone" icon.

(For the geekier amongst us, this:

is how everything runs thru the Alertmaster unit.

The smoke detector, as I mentioned last week, is a unit unto itself and let's hope we never see it in action again. But it's there, and it's working.

Hard for me to explain how happy these things made me - especially the door knocker. (It sits on the inside of the front door, safe from the elements, by the way.) It's a really unpleasant feeling knowing that you could never know if someone was at the door. It's important to me to know that the phone has rung, even if I can't answer it; I check to see if there is a voice message (light on phone blinks). If not, I know the call wasn't important. If yes, I can direct Husband to it as soon as he gets home. It's important to me to have a TTY so that in an emergency (or, as I get more comfortable with it, not in an emergency) I can make a call using a relay operator. (911 is easy; you just dial and leave the line open, and they'll come eventually. *That's* a godsend.) These things just made me feel happy. The weekend was just ... happy.

Happy is not what the system is making the cats. They spend a lot of time, as do I, curled up on the bed reading or watching tv (well, I read and watch tv, they snooze and occasionally do the New York Times crossword). They are not impressed when the alarm goes off. Flashing lamps, bed vibrating?!?! They're utterly freaked out and almost invariably run away, much to my disappointment. I feel so badly for them. But sometimes I can coax them into seeing the alert (about 15 second long, unless an event such as a door knock is repeated) through and settling back down. I know that eventually they will adjust to it but I hate seeing them distressed for now. I knew this change in my life was going to affect 'everyone' but I honestly didn't anticipate it upsetting the cats' routine.

Ah well. I guess nobody in the family is immune to having to adapt to this thing.


Friday, August 20, 2004

See, now, THAT'S a loud light

Like, totally exciting day here at Casa Ronniecat, where at 7:30 there was a knock at the door (Husband could hear it, I couldn't) and I answered it (Husband was naked, I wasn't) and it was a delivery guy with a BIG box which I rushed upstairs 'cause I knew it was my DEAF KIT!

Husband is an Ebay god, with over 430 "feedbacks" from successful transactions and not one negative one. He buys and sells everything from rare books to albums (remember vinyl, children?) to electronic studio equipment. Since I lost my hearing, he's proven to be a brilliant miner of materials to aid our life at prices that make my few deaf friends twist their faces in envious disgust, so I've finally just stopped talking about it. Even by his standards, though, finding this "Deaf Kit" was a coup of another colour.

When you check into a hotel, you can ask for a "Deaf Kit" and they will supply you with a suitcase full of stuff to transform your hotel room into a safe and adapted deaf environment. Ours is such a kit, a hardbody case containing a TTY (teletypewriter to connect with the telephone), a "door knock alert" unit which actually attaches to the door, a smoke detector/fire alarm, a bed shaker, and a central "alert unit" and alarm clock that essentially keeps track of all of the above and lets you know what's going on. (For instance, if someone knocks on the door, a light flashes on the unit reading "Door Knock"; if the phone is ringing, it's "Phone Ringing".) In fact, it contains the same items as pictured in this picture, some identical (TTY, smoke detector, door knocker), others similar but different.

It was such an embarrassment of goodies that we haven't had time to even begin playing with it, as we had to get to work. But we did grab the easiest item to test, the smoke detector.

The smoke detector looks like a regular square smoke detector with a bar light which has "F I R E" written along it attached at one end (it's to the right, above the alarm-clock/control unit in that picture; it uses the standard nine-volt battery to run the detector and an electrical plug to run the light. Husband stuck in a 9-V, plugged it in to the wall, and hit the 'test' switch.

I wasn't sure what happened next. Husband made a face; the cats bolted for the stairs; but nothing was happening, lights-wise. "Is it making a noise?" I asked. Husband looked at me with a positively plaintive look that can only come of one who is hearing an excruciatingly loud noise in the presence of another who asks such a question, but before he could answer, the light started.

They always describe these smoke alarms for the deaf as having a "flashing light". And I'm always thinking to myself, "Dude, a 'flashing light' is *not* going to wake me up." It's one of the things that's worried me ever since I lost my hearing.

Maybe what the ad copy should says is "Great Blinding Goddamned Frightening Retina-Searing Flashing Light of Death". 'Cause if I had known that, it woulda made me feel better.

It's like a photographer's strobe, only many many times brighter. It flashes about once every second and a half; enough to be annoying to a sleeper, but too slowly to disorient.

Brother, if that thing goes off, it's gonna wake me up.

Can't wait to try out all my other new tools tomorrow!

(What's that? What did he get the kit for on Ebay?

I'm not talking about it.)


Thursday, August 19, 2004

Last Night I Dreamed the Strangest Dream...

Last night I dreamed I got my hearing back.

I don't mean that I dreamed that I could hear. As far as I can recollect, I can hear in nearly every dream I've had since I went deaf. In the dreams, I'm not surprised that I can hear, I can just hear as if it never left.

Last night I dreamed that I regained my hearing. I lived through it happening.

It's the third such dream I've had since I lost my hearing. In this one, like the previous two, I was deaf and aware of it; and then suddenly aware that I could hear sounds, quiet at first, just tiny hints that got my attention; but within minutes, louder and louder. In the dream (like in the first two), I ran all around my house, banging on walls, rattling things, hitting things, rattling paper, slamming doors, so that I could hear the noises. I was so exhilarated.

It's quite a letdown to wake up from that dream, let me tell you.


Wednesday, August 18, 2004

Yes, She Has No Implants

Kathryn Woodcock is an engineer, holds a PhD and is a deafened adult. She runs the website. She is also cranky, curmudgeonly and no-nonsense and speaks her mind. That's why, while she can seem a bit harsh, I find myself returning to her website for commentary and articles.

In Yes, We Have No Implants, she takes a critical look at why deafened adults choose to get implants. Do we feel guilty? A burden to our friends and families? Is this a good reason to opt for serious surgery?

Hearing people can't imagine anyone not wanting to get a CI. For the deafened or the deaf, it's a much more complex question. Woodcock herself has chosen not to get one. I think it's a thought-provoking and worthwhile article, a bit of a reality check, and a useful opportunity to continue hearing both sides of the debate.


Tuesday, August 17, 2004

Captioning the Big Screen

While things are in a bit of a lull for me (sent away my CI package about a week ago, now we wait), check out this neat thing: a 'rear-window' captioning system for movie theatres! It's such a simple design it's incredible nobody thought of it before, but when someone did, it was the amazingly creative people at WGBH, the Boston public broadcaster which has become a leader in closed-captioning.

(From personal experience I can tell you WGBH is second to none in the CC business, adding touches like sound effects, identifying by title pieces of music playing, etc. Fox uses WGBH for almost all their original series which means that the home of bad taste on broadcast tv ironically has the best-quality captioning. [Best-captioned program on tv? No doubt, The Simpsons.] The very worst? Spelling Productions, which captions its own programs in-house. It is so hideously bad - watch three minutes of "Seventh Heaven", if you are able to stand the content to view the effect, to get a taste of it at its worst - that it is incomprehensible why they bother. Something to do with the Persons with Disabilities Act, one supposes.)

Anyway, this new MOPIX system is much, much cheaper than opera-style back-of-the-seat captioning to install so hopefully, it will be coming soon to a theater near you. So far it is installed for some reason in Alberta and Manitoba only (shrug); it will doubtless hit Ontario and Quebec toute suite; perhaps it'll get out here in time for me to see "Star Wars -XXVIII: Something Moves In The Primordial Ooze".


Friday, August 13, 2004

Getting a summarized statement of the whole day.

Today I read a very accurate and moving poem by Kimberly Dianne Richardson about what it feels like to be deaf. I'm trying to find an email address to get permission to post it here, but I will take the liberty of posting an excerpt which really struck me, because I didn't realize other people felt this way too:

"Natural curiousity perks up
Upon seeing great laughter, crying, upsetness.
Inquiring only to meet with a 'Never mind' or 'Oh, it is not important,'

Getting a summarized statement
of the whole day."

The first couple of times somebody tried to give me a "Never mind" or "It's not important" when I asked what was going on, it was devastating - I just felt crushed and dismissed. I decided very quickly that I wasn't going to put up with it - it just made me feel too ... insignificant, a nuisance. Even "I'll tell you later" makes you feel like an idiot - especially if they never remember to. So now, if it happens, I say, "No - tell me." And I hand them the notebook. Nobody's fought back yet! :)

Fortunately, my friends make a genuine effort to communicate, so the times it has actually happened I can count on one and a half hands, and never the same person twice.

But consider this a kind of gentle public service announcement for anyone out there with deaf or hoh friends - what you said may have been silly or unimportant or throwaway, and it may be more trouble than it's worth to write it down. But it's soooooooooooo important to the deaf friend that you don't dismiss the query. Soooooooooo important to their self-esteem.

Her comment about "getting a summarized statement of the whole day" is an absolutely perfect description of communication for the deaf... our whole world of information is a précis. And that, even our dear friends can't change, as much as they try.


Thursday, August 12, 2004

Oh yeah? Why don't you come over here and say that!

Taken just a couple of days ago as they "helped" me garden. They were staring in utter disbelief at the audacity of a squirrel who was throwing seed pods at them. (They were parked under a bird feeder he loves to raid. He was one pissed squirrel!)


Unfortunate Closed-Captioning Cockup of the Day

On "360" last night, Anderson Cooper segued with what the closed-captioner rendered as:


Poor Kerry! You don't suppose Vitac (CNN's main CC provider)is owned by Rupert Murdoch, do you?



Wednesday, August 11, 2004

Give it to me in writing ahead of time and don't move while you say it.

I was looking around on the web today for some helpful suggestions on being deaf in a working environment (every little bit of additional info helps). Didn't find anything I didn't already know, but a comment by Beth Wilson, a hearing-impaired engineer for Raytheon corp, in this article made me smile:

"Lipreading is successful only if you have three things: the person never moves, you know all the words they're going to say, and the words are predictable."

She went on to describe a phenomenon that I thought only I, as a rank newbie, experienced:

"Everyone who depends on speechreading for help in communication knows that you can be understanding a person perfectly, and then suddenly like a switch you understand nothing. You miss a key word and as your brain tries frantically to figure it out, you can't make any sense of the rest."

So it's true even for experienced speechreaders. I guess that makes me feel better!


Big Brother is Watching Us...

Don't you find it a little creepy that the ads at the top of this blog are all related to hearing loss?

Kind of like finding out that your suspicion as a kid was right - the people on tv could see you, too.


Tuesday, August 10, 2004

Just gimmee the damn chicken strips already...

Ya want to know what is the most unexpected change in my daily routine?

Eating at fast-food places.

It's true.

Drive-thrus are right out, obviously, but even a simple takeout order can be a nightmare, since the staff are told to offer you all and sundry kinds of things you didn't ask for, and lipreading is all about context. When I say, "A chicken fajita, to go, please," I may be able to catch "Anything to drink?" or "Hot or mild salsa?" because they're in context; but I sure as hell am confused at "Would you like to try one of our new yogurt and fruit parfait desserts today?"

So frequently, when eating alone or with people I don't know well, my choices are based in a fast-food mall not on what I want but what I think I can get with the least fuss.

Weird, huh?

Ooh, hot tip for any deaf or HoH people out there - Husband found a hella deal on a Shake Awake alarm. (Note: See edit below.) These folks offer free shipping to the US and Canada, and with these units retailing at anywhere from $19 on Ebay to $49.99 retail, plus shipping, it's a hot deal.

I was put off initially by the url - Buyer Shaven??? - until I went to the website and saw that it's "Buyer's Haven". Aha.

Edit: I guess you get what you pay for. I never recieved the alarm, and Buyer's Haven did not respond to repeated emails asking for information or a refund.


Sunday, August 08, 2004

Painting for Cats

So, yes, I did it. And it hurt. And probably the less said about the whole sorry business the better. I am really glad I did it, and I would have been very disappointed in myself if I hadn't gone through with it.

As we were leaving the house to go to the hospital a nice happy bit of synchronicity; the package arrived from the Halifax Cochlear Implant Evaluation Unit. It contains info about the two different types of implants they use; and a whole bunch of forms to be filled out, including a detailed medical history for me to fill out, and, interestingly, an "expectations" form for myself and for Husband, which I guess is used to determine which patients (and families) are expecting miracles; s'okay, I'm not expecting miracles. "Reasonable facsimile of hearing" would be most warmly embraced.

Dr. H. decided to put in the tube but also put in something called the Steinberger wick, a literal wick that goes through the tube and wicks the steroid eardrops behind the eardrum, which is where they need to get to (hopefully) work. The other option was needle injections through the tube to behind the eardrum; I told Dr. H. I'd go along with whichever he thought had the best chance of success but I'm sure as hell glad it was this one!

The steroids being prescribed are (I am not making this up, kids) apparently so potent that only three pharmacies in the province are licensed to dispense them; so we had to drive about fifteen minutes out of town to a nearby farming community to reach the nearest one. ("Maybe they're for cattle," I mused dubiously.) Three drops a day, three times a day, for two weeks. They sting a little but otherwise it beats a poke in the ear with a sharp stick by a country mile.

Anyway, besides that I have also been busy secretly planning Husband's 50th birthday celebration which happened last night... it was an amazing evening, he was completely surprised (not surprisingly - his birthday isn't until Tuesday!) and all our close and dear friends made the effort to be there. It really meant a huge amount to me that people turned out to give him cards and even gifts, and to lift a pint with him - in a way it was an effort on my part to thank him and celebrate him for all the support he's given me these past trying months.

Goes without saying that I had help - my wonderful friend C. (the same one I spent my museum afternoon with) made all the phone calls I couldn't make and was just phenomenal in getting the word out. She's been such an awesome friend through this.

The owner and staff of "our local" capped the evening by providing - unasked - copious pitchers of free beer and exquisite service and much fussing over the guest of honour; the owner is just a sterling guy and he hires youngsters (most are working their way through university) who are just the cream of the generation coming behind us, in attitude, in personality and work ethic. What a good bunch, how nice they made our special evening.

Now, my own personal birthday pressie for Husband won't be ready until his actual birthday, but "the kids" (Veronica and Mojo) had already finished theirs, so it got presented at the party last night:

A little non-toxic acrylic paint, a little water, a few hours in the freezer, and voila! ice cubes just custom-made for a couple of cats to skitter around on paper. We waited until "Dad" was out and laid down a ton of newspaper in the kitchen and had ourselves a gay old time. Mojo got more into it than Veronica, but to my surprise she was most intrigued as well. They knocked the ice cubes around, walked over the painting, and Veronica added a nice touch of spattering when she paused to shake a paw fussily. (Those are their pawprint "signatures" in the lower right-hand corner, in red.)

(They didn't enjoy having all four paws thoroughly washed later with soap and water but, hey, you have to suffer for your art.)

Vacation over, back to work tomorrow...


Friday, August 06, 2004


Wednesday, August 04, 2004

"What fresh hell is this?"

Yesterday was a very bad day; I felt down, actually the most down I've felt since the beginning, and for all the wrong reasons.

We're on vacation so like any other couple with a home that means lots of work :) We got up early yesterday morning and repainted the porch, the new one we added last winter, and were nearly done when the phone rang.

It was Dr. Henderson, Husband signed quickly, and he and Husband talked on the phone a very long time while I fidgeted and wondered why it could possibly take so long to say that the CI Evaluation Unit in Halifax had set a date.

It turns out Dr. H. has been discussing my case with some colleagues and doing some research; and while the wait for the CI eval is still very much on, he wanted to try a new therapy which carried "some" possibility of hearing recovery.

The treatment involves steroid injections directly into the ear under local anaesthetic; in fact, he is considering inserting tubes into my ears to facilitate repeated rounds of injections.

My reaction to this news was less than overwhelming anticipation. In fact, I had a good hard cry, the first one I've had since my deafness.

I know that Dr. H. is a very good doctor. I also know he has taken a personal interest in my case. He expresses himself to Husband as being genuinely... how can I put it?... grieved that this has happened to me, and wants very badly to help reverse or lessen it. I trust him a great deal.

But the prospect of yet more painful and invasive treatments, which I did not feel in my heart really had any hope of succeeding, just filled me with despair and fear. On the heels of the CAT scan and the MRI and all the blood tests it felt like another creative torture, and a particularly hideous one. Shakespeare knew what it felt like: "What fresh hell is this?"

I've had too many procedures under local anaestetic to put any faith in such airy-fairy "freezing" nonsense. I believe it's a ruse the medical profession use, bless them, an illusion to steel themselves against the realization that sometimes you have to inflict a lot of pain on conscious people. But it doesn't work, at least not for me. And now they want to stick great needles in my ears and poke around and stick in tubes and such. The only good news is that it won't interfere with a cochlear implant later.

I wished in that moment with my head on the dining room table that he'd never heard of it, never learned it in medical school, or never researched it. I wished that if he had, he'd thought better of offering me the option. I wish he'd kept his steroid injections and his tiny tubes to himself.

Because, given the option, how can I say no? I feel I don't have any choice. If they say, "We're just going to dip you in this nice bath of tepid hydrocloric acid and dump in a few electric eels, there's a good girl, it might restore your hearing" I really have no choice but to say "Okay - as long as it's only tepid, and the electric eels shouldn't last too long at least!"

Husband says no; he says I have a choice and I can say 'no' to this. But I can't. I would feel I was letting everybody down if I didn't take every opportunity to grab at the brass ring of hearing which is offered. Everybody who has supported me, and as you know from this blog, they've been many and varied and generous.

"Could you forgive me," I asked him, "if I didn't try this?"
He paused to consider. "Yes," he said firmly.
"Well, you know what? I think I actually believe you." (And I do. He meant it. At least, he knew in his heart he would try, and he believed he could.) "But it doesn't matter, because I couldn't forgive myself."

So now I am waiting for 3 pm Friday when I go to the hospital and get whatever the hell this entails done (Dr. Henderson unwisely compared it to "a visit to the dentist"; the wrong analogy for someone whose worst and powerfully overwhelming phobia is dental visits, to the point where I had to be drugged just to get me out of the house and into the car). I dread it so deeply it is in the back of my mind all the time, no matter what I am doing. But certainly that initial flash of irrational and misplaced resentment at Dr. H. has passed (I knew even at the time it was irrational and insane which was what reassured me I was still rational and sane). I am extraordinarly lucky to have someone of his stature (one which is constantly reinforced to me by medical personnel doing the testing, and by friends who are family members or parents of his other patients) take such a personal interest in the case. I do not wish that he had never learned it, and I do not wish that he had not inadvertantly removed choice by offering me the choice.

Because, you know, here's the thing:

what if it works?


Tuesday, August 03, 2004

Really, Truly, Profoundly Unfortunate Closed-Captioning Cockup of the Day

CNN close-captioning quoting John Kerry's response to some hecklers who showed up at a Kerry campaign rally: