A Spectra-22 speech processor is a bulky piece of hardware, that’s all I can describe it as after eight years of toting one around.

For those who are unaware (and the general web-cosmos out there), I’m deaf.  Stone deaf.  Lost my hearing by way of genetic disorder and lost my hearing at 18.  I was implanted with a version of Cochlear’s Nucleus-22 processor (known as the ABI) but didn’t go through with having it “turned on” (so to speak) until October of 2001.

…and if I knew how well I would hear with this implanted device, I would have gone through with it much sooner. 

The thing is, with the implanted device, you have had to wear body-worn equipment to make it work.  Stuff on your person.  And for eight years, I’ve been wearing what essentially is a obsolete piece of equipment.  The Spectra-22 was originally state -of-the-art in about 1989 – give or take a few years.  While the entire concept of a late-deaf person hearing again is fantastic, technology sometimes does limit as much as it enables.   Like in my case. (more…)

So, the contract for my Blackberry 8700g and my Tmobile account comes up for renewal at the end of September. For two years I’ve been pretty much happy with what I’ve gotten (sans a few aggravating moments here and there). I’m wondering if I should simply renew? Renew and replace my blackberry with another model? Or perchance I should jump ship?

My blackberry is worn, the trackwheel is functional but barely — and tends to stick when scrolling through web pages or my menu. Real pain in the ass to deal with if I am trying to browse the web or just navigate applications on the Blackberry desktop menu. Then you have the fact there is no camera built in like just about every other cell phone or handheld out there and it seems just a little to antiquated.

So if I upgraded the Blackberry and Kept T-Mobile, I’d likely switch from the 8700g to the Curve. The interface seems straightforward like the 8700 and what not. No big learning curve (no pun intended). There’s a built in camera and what not. Bells! Whistles! But not bleeding edge.

The other alternative is for me to let the contract expire and go with another carrier with another device. Of course, the IT device right now is the iPhone and only one carrier has it — American Telephone and Telegraph. Unlike T-mobile, AT&T doesn’t straight out offer people in circumstances like myself a data-only package. No, in most cases you have to buy a standard package with the iPhone even if your hearing does not leave you capable of utilizing the phone itself on the device.

AT&T does offer data only, deaf packages for the iPhone but you have to jump through hoops in order to get it. I don’t even want to try to figure out the swing-time it will take for someone in the offices to read over signed documents, proving my deafness, and then approve the data only plan. It’s certainly not user friendly (or enabling) to only offer the application to those seeking them for phone use alone. Some people — even the hearing — would like a convenient, mobile means of surfing the web, texting and utilizing mobile media… All while not paying out the rear end for a laptop that is too bulky to utilize for simple mobile applications.

So as it stands at the moment, T-Mobile looks like it’ll be getting my business again by default. Anyone else have suggestions?

1997.

As I said in October, I had graduated from High School that year, forgotten in a huge senior class at East Lake High. There was one quality I had, though, that stuck out which people may remember me by — my hearing was shit.

After graduating in June of that year – with about 25 percent or less of my original hearing, I basically did nothing. I was reached out to by no one and didn’t attempt it much myself because I was the wall-flower… I couldn’t hold a conversation with thanks to not being able to understand what people were saying (even with the help of a hearing aid). And at age 18? Who’s going to put up with that?

I sank into depression and my health deteriorated. This hearing situation had already led to my decision not to attend Flagler College in St. Augustine (where I had been accepted the previous spring) and now I was isolated and alone in a world I couldn’t take part in. My balance became somewhat less dependable than tuning into MTV and seeing a music video playing. I wobbled and swayed all over the place and depended on leaning where and when I could, onto stable and solid things… Anything to keep me upright.

that’s little ole’ me, circa November 1997

It was sometime in October of that year that I had an MRI performed on my head, and in a matter of days had a doctor tell me flat out that I could go to bed one night and not wake up the next morning. A 7 centimeter tumor effecting blood flow and cramping the brain will do that to you. Acoustic Neuroma is the scientific term to describe this, but the truth is it was the end of one life and the beginning of another…

It’s been ten years – not by choice, not by design, but by inevitability – that I’ve been deaf. Ten years since the natural hearing world escaped me and I was plunged into a more difficult version of society where one attempts to fit in while feeling like an outcast. Sure, I use a variation of the cochlear implant now (and have been for six years) and am doing quite well with it but I still haven’t turned a corner to make conversation easy to understand and take part in with strangers. I miss that the most…

It also doesn’t begin to describe the immediate aftermath aftermath — being trapped between worlds — a deaf person in a hearing world, a hearing person in a deaf world – where those around me refuse to adjust and demand my adjustment to them. Or being thrust into the paranoia filled bigotry of the deaf community where the hearing (or late deaf) were not welcome unless their commitment to the deaf life was total and utter.

Of course the flip side of this is that it got me involved on the Internet, which led to a job, which led to my web design talents, which led to a certain legal threat and a lot of pluses and minuses along the way.

10 years gone, and I’m still standing.

10 years gone, I’m still left wanting.

My buddy David sent along this story about a deaf person’s Starbucks encounter and brought back “pleasant” memories of being treated in the same degrading way in the past.

Of course, this time, the hearing impaired person got the comeuppance. Cruel in a way but with how horrid you can make someone (afflicted, disabled, or just different) feel by treating them below you, that’s cruel in itself,

I haven’t written much about my health the last few years on der Stonegauge… Mostly because Stonegauge is syndicated on the ever-so-excellent Tampa Blab where some of my blog colleagues (who know me better from my endeavor at Boltsmag or my participation at Sticks of Fire) can get wind of this stuff and start fussing and worrying about me. So can my critics as well with anything personal I write about on here. I’ve had private stuff published on this domain before and had it come back to hurt me. But that’s what happens when you blog, ain’t it?

I’m getting away from the fact that I said I haven’t talked about my health much at all on here lately. For the uninitiated, I suffer from a rare genetic disease commonly referred to as NF2. It’s a nasty little gem of a disease that doesn’t get much attention (besides an odd mention on House M.D. every-so-often). It causes benign tumors to grow mostly on nerves in the body. One of said tumors were the reason I began to lose my hearing as a teen and was rendered deaf 10 years ago last December.

It also gives me the supernatural abilities like super-intelligence, telekenisis and empathy along with…

Wait a minute, that was a John Travolta movie. Never mind.

Seriously… The last time I really brought up (bitched, moaned, vented, etc) my health was the summer and fall of 2003 when I hit a couple of hard patches and was frustrated, scared and just flat out torn up (to put it lightly). Blogging things publicly helped me get my frustrations and worries out in the open… or at least out of my head for the moment until the next panic hit.

It’s 4 years later and I’ve got problems again. Problems in my head this time that get the doctors attention. Now, from the smart-ass perspective, you’d quickly quip “Yeah, anyone who (inserts a thought, political idea, interest, etc) would be classified as having problems in the head!” but it’s a little more serious than that. About 5 centimeters worth of serious. Between-my-ears, behind-my-eyes serious.

I’ve been operated on twice up there before. Both times I had the operations in question out west with one of the top doctors in the world. This time around, I’m sticking in Tampa Bay and trusting a doctor who’s been heralded to me as one of the best in the world. He’s got books and awards and all that jazz. He’ll have some of my old friends along with him to make sure my ABI doesn’t get fudged up and what not.

Still, there are risks and even if they aren’t substantial — what they are is a worst case scenarios. So I worry about that, even though it’s almost like thinking about worst-case stuff when you go out and do day to day things.
“The worst case scenario while driving to the Supermarket to pick up milk is that an out of control mack truck with a drunk at the wheel, plows into my car and explodes…. Oh, and I don’t die instantly on impact!”

Rosy, cheery stuff like that.

So part of my mind (ha — the cause of all my problems) keeps wanting me to be responsible and at least report this upcoming operation, make arrangements for the “just in case”, “worst case scenario” type things. Every other part of me wants the status quo to remain — though that status quo is a deteriorating personal conditions where the changes in my health are more or less subtle until I get to a tipping point and things really get messed up and my life hangs in the balance.

Rosy, cheery stuff like that.

I don’t want to face the idea of things — out of my control — go bad and yet with responsibilities to friends and loved ones, how can I not?

What decade do we live in? The 1950’s or the 2000’s?

I’ve got a laptop computer I basically can’t use not because it’s not in working order but because it doesn’t have the capablity to do what I need it to do and thus it makes the machine expendable. I’ve been looking for a way to move the laptop without losing a ton of money on the deal.

I looked on the Tampa Tribune’s website and through their classified ads in an effort to look through the Laptop market and see if anyone was trying to purchase laptop computers in Tampa. I found www.tampanotebooks.com which is operated by Performance Computer Group. They’ve got a shop on Dale Maybry and they say that they buy used laptops – working or not.

I figured to call them up and see how much I could get for my machine… A phone call isn’t such a painful thing after all. Even if it is Voice Carry Over through the Florida Telecommunications Relay Service.

So I called up Performance Computer Group of Tampa — three ring slater a man picks up and the text that comes across my TDD phone reads thus:

“Uh, we don’t do any Relay calls. OK, thank you.”

*Click*

Some people don’t get what a Relay call is… It’s when someone deaf is calling you through a carry over service. It is not an excuse for you to treat a caller like a complete piece of shit. I’ve dealt with that from Bright House Customer Service and Capital One customer service as well. Usually I call back and get a representative that isn’t such a moron.

But in this case? The company just lost my business and came off like he was against the Relay system to begin with. “Why bother? Just some deaf clown trying to hassel me.”

Honey, my shitzu Yorkie terrier mix, had been on her last legs for a while now. Her teeth had basically rotted out and she was having problems eating, she weakened and she was having problems getitng up and down the stairs among other things.

She’d been deaf for a while…. But this afternoon (unbknownst to me) my father took her to the vet to be put down.

Her suffering has ended though… I hope she is at peace wherever she is….

It was sort of an interesting thing to happen and cool that it happened to me but at the same time, it aggravated me… No, not just that, it infuriated me.

Last nigh, a representative from Warner Brothers Home Video emailed the webmaster of Boltsmag.com — namely moi — and tried to recruit me to help sling their product on the web. The product in question is the Stanley Cup Championship DVD which shows highlights of the Tampa Bay Lightning season along with Game 7 of the Stanley Cup Final and the Lightning being crowned as Champs. It’s a DVD I very much want to be able to enjoy….

But I can’t. No sir, I can’t invest a couple of bucks in the DVD knowing it’s going to a company that didn’t complete the DVD and put it on the market. I can’t invest in a company branch that does it all the time with their sport DVDs. The Warner Brothers Stanley Cup Championship DVD lacks Closed Captioning for the Hearing Impaired and I happen to be hearing impaired.

Lets roll back the clock to more than a year ago with the Tampa Bay Buccaneers winning the Super Bowl…. It was a cap on a dream season for the Bucs and I quickly went and bought the DVD that Warner Brothers Home Video produced that had the entire game — or a likeness of it — along with season highlights and a pre and post game show (so they claimed).

What I found out, cruelly, was when I tried to view the season highlight package (which is always an incredible job done by NFL Films) I got pictures and sound but no clue what the narrator was telling me. No clue what miked players were saying. I could see games and relive moments but not find out what people were blabbering about at any given moment…. Was this a joke? I went to the actual game and they had the network video feed but — what is this? Not only is the video feed replaced by the respective teams radio commentary men but — no closed captioning. I had no clue what was being said by Buccaneer radio man Gene Deckerhoff or the Oakland Raiders respective play-by-play radio man.

So I could see but I couldn’t really enjoy the DVD. I wrote off a scathing letter to Warner Brothers Home Videos and got offered a free DVD of my choice as if to say “Sucks to be you – have one of our movies we can’t move on us!”

This isn’t an isolated incident with DVDs and lack of closed captioning. While major motion pictures are captioned on all DVDs, DVDs tend to be loaded with extra features such as commentary tracks and featurettes. Neither of these are captioned so that the hearing impaired can enjoy these additional features they are paying for when they buy DVDs. To make matters worse, Universal Home Videos doesn’t even use Closed Captioning but instead relies on Subtitles (much like you would see on a foreign film) with their movies. It becomes difficult to follow the film if the text is set on a white background or over a bright object. You lose entire sentences or entire conversations because of the setting of a scene.

And it gets worse from there. Trimark Home Video has the rights to NBC’s Saturday Night Live on DVD — which is both syndicated on TV and broadcast on NBC with full closed captioning… Trimark couldn’t be bothered to add this captioning to their DVDs of Saturday Night Live. Just as Rhino Home Videos couldn’t be bothered to add captioning to their DVD palette which includes children’s TV series like Transformers, Jem, GI Joe… Not to mention their Monkees DVD’s…. Or their original offering of South Park DVDs. (I have no clue if Rhino is still responsible for publishing South Park DVDs at this time. This may have changed).

With the Baby Boom population aging and their bodies failing them to one degree or another, why is it that the Home Video industry gets away with this? Better yet, with 22-34 deaf and hard of hearing Americans out there, why does the movie industry think they can ignore this demographic when it comes to their home video sales? Even more pertinent, why doesn’t someone stick the Americans With Disabilities Act in their face and tell them to shape up or ship out?

It’s an ironic story that Warner Brothers tries to get someone to help sling their DVD — for free — on the web when that person can’t even enjoy the product. It’s even more ironic that no one in the deaf community or elsewhere in America makes a fuss out of this… It’s one of the great dupe jobs going on in the entertainment industry for the sake of the almighty buck.

The biggest reason I am glad I am deaf is pointed out by Matt at Defective Yeti

Absolutely no love lost for the fact I can’t be awoken because of mother nature :biggrin

You know, I was going to brush off this anniversary as another one that was a major milestone but also something I could forget because my day-to-day is busy enough without having to nit-pick at the past.

But it’s an interesting anniversary none the less — one that goes from silent to booming in 4 years and applies only when I’m lazy now.

I went deaf 6 years ago to the day.

I had an acoustical neuroma (egad, did I spell that right or wrong for the umpteenth time?) removed out in Los Angeles at St. Vincent’s Medical Center by doctor Derald Brackman and company… I woke up – not sure when, can’t recall what I was told in the past – with the only sounds in my head a constant tenninus and my own voice when I spoke. Of course, I hadn’t been able to hear much before that, as I had been constantly losing hearing in both ears since 12 or 13, but six years ago — my world went totally silent.

I can’t remember all the details – I checked in the night before to the hospital. I didn’t shave my head, like I should have done, and that resulted in a gnarly haircut… I do recall me quipping about the Big One hitting during the operation (“what happens then?” I asked those who were prepping me) and I can recall the immediate aftermath of surgery – being chained to a bed and being asked to touch my nose with my restrained hands.

Of course there is more to it – my life now with sound and the Auditory Brainstem Implant has beaten deafness. There are anecdotes from when I went deaf and the immediate aftermath to regaining my hearing in 2001 with the ABI… And of course me aborting setting up the ABI in March 1998 and delaying having sound back to begin with… but alas, that is for another time because my computer is in need of help.