Congratulations, Ronniecat!!!

Ronniecat has a swell new job! She'll be doing what she's doing now in the private sector (working with multicultural and community associations) for the Canadian gummint. Her new gig involves lots more money, better benefits--and doing it all in FRENCH! Is this a brave young woman, or what?

The downside will be either a 4-hour commute each day or, alternatively, spending part of each week AWAY from her dear Husband and Cats!! I WAS hoping that on days she picks the commute, she could do so via the fabulous Canadian rail. Four hours of naps, breakfast or dinner (or both) in the cafe car, reading, listening to tunes, and at night sleeping in her own bed.... but ha...Canadian Rail, alas, is no more fabulous in the wilds of New Brunswick than Amtrack is in, say, North Dakota or Iowa. There seems to be but one train per weekday that runs between the town where Ronniecat will start her new job and a station that is relatively close to where she lives now (but not RIGHT IN TOWN).

We've learned to look up to Canada as superior and more civilized than our beloved US of A. But golly whiz...it's THEIR polar bears who are being forced to swim where once they could sit on the ice and have a civilized Canadian dinner of baby seals. You'd think the Canadians'd, um, do something about beefing up their trains instead of bragging about all their new highways.

Oh, they are superior. I'm not being snide. As a Yankee, I've come to expect greater clarity of thought from the rest of the world on the whole issue of global warming. But get this, the Loonie is now worth more than the US peso-formerly-known-as-dollar! Methinks the end is nigh....

Nanowrimo....the gift that keeps on giving

(Prefatory note: I still have dialup, and I have always had two phone lines because this place used to be two apartments until I combined them...such fun).

This morning I discovered why there is such terrible interference on the phone line in my bedroom. I've lived in this condo for 10 years and never knew about the interference. As the deaf would sign, making a flicking gesture as if knocking crumbs off both shoulders simultaneously, it was "not my problem."

This spring, however, I got a cochlear implant and when I attempted to talk on the phone for the first time in 40+ years, I discovered the interference is so bad on that telephone, I can't talk on it. So I bought a second phone and installed it in the den, where it was sharing phone line #2 with my laptop.

Long story short, I started Nanowrimo today and,in a great burst of laziness, decided to move my laptop into the bedroom so i could write in bed. Lots of authors do this, I've heard. And guess what? To my astonishment, the little airport icon at the top of my screen was lit up and all the bars were solid. If you have an iBook, you will know wot I'm talking about. I clicked the airport icon, and discovered it was ON!! High speed internet, just like Starbucks!! There actually are about 5 or 6 airports for me to take off from, too.

It's been an amazing day! Not only did I stay awake to finish my daily quota of fiction, I downloaded all the software repairs and upgrades that have been nagging at me weekly since last year in less time than it took to clean and slice a quart of strawberries! Usually, it would take all day to download ONE upgrade, and I'd have to sit there and poke the return button every time the dialup connection threatened to cut off.

I got SNOOD on trial, too, and some kind of clip thing that lets me cut clippings online and, once the copyright stuff has been taken care of, post them on my blog or email them or just save them. (Great! Electronic clutter, too!!)

Best fun on the phone for the week: As if being connected at high speed were not enough excitement, I got a NOTHER call from a telemarketer today, and I neglected to turn on my phone coil (more technology)...anyway, I had to ask him to repeat several times, and when he finally ast me to give him the "make and model #" of...??? (I think it was my car, which I sold back in 1991). When I said "make and model of what?" he hung up on me!!! Tsk. I never hang up on telemarketers. I just tell them I'm very sorry but I'm not interested in whatever it is they're calling for, and that's that.

so that's what it was....

although i've written thousands of words about deafness, being deaf, going deaf, getting implanted, etc., it took a visit to ronniecat's newest post on her blog (www.hearingloss.blogspot.com)* to see the words I need to describe the whole deafness meshugaas in print. to wit:

"the tinnitus, the being scattered, the forgetfulness, the inability to retain names, the overflowing sinks, the burned food, the unintentional isolation and exclusion by friends, the impact on one's marriage and family life. About the unintentional slights and hurts. The shock of becoming almost literally invisible to certain people who simply can't cope with you so don't engage or acknowledge you. About when to understand and let things go, and when to protest."

also, ronniecat, in today's above-mentioned post, said she has done peer counseling with other implantees. she's the second person to mention this kind of thing. nobody at my clinic has said anything about this. if i have a peer counselor, though, it's definitely ronniecat. she's been a tremendous support even though she lives dang near to iceland. many thanks, kid.

still the pricey little bottlecap under my scalp is humming along just fine all by itself. i'm hearing more and more everywhere i go. today on the metro i heard the two guys across from me talking. and the overhead announcements are flowing fast & thick. (jeez....do people really need to be told which stop they're at? you can figure that out from the maps all over, and from reading the signs as the cars whiz through the stations. they don't say the stop until you're already there, anyway. it might be mildly helpful if they'd say which stop is NEXT, like at farragut north, for example, "the next stop is dupont circle" or "the next stop is metro center" (depending on which way you're going). that would give you a few minutes to scrape yourself together and be ready to get off when the train stops. but quibble quibble.)

and peggy, one of these days, you're gonna get a call from me! i've been practicing, and i've had about 5 successful short phone calls now.....even using my cellphone!

*I'm reduced to using my laptop, my computer having conked out yesterday, and while it's faster, it doesn't seem to be able to let me LINK anything. maybe this laptop hasn't figured out that blogger has switched us all to google. maybe this is the old version. ver vaist??

"Mozart Meets Cuba"....

Elvis (not his real name...heh), the audiologist at Johns Hopkins Listening Center, was very pleased with my progress on Wednesday, when I had my one-month checkup. He compared Wednesday's audiogram to the one he took on my first visit, pre-implant, and said, "This is fantastic!" For 250Hz, I scored a 10; for the next four (500Hz-4000Hz), a 20; and for the highest sounds (8000Hz), a 30. This puts my hearing in the "normal" range. Who knew??!! In the old days, the best I could do even with a hearing aid at 250Hz was 75, and all the rest went down past 100, making me profoundly deaf.



He said also that it takes two years for the implant to work at its optimum, and after just one month, I'm not anywhere near my peak efficiency yet. I don't think this means I'm gonna wind up hearing in the dog ranges, but it will mean that the sounds I'm hearing now will be richer and fuller, and speech without lipreading will be more recognizable. Even so, we let the sign language interpreter go, since I no longer need her to understand what Elvis is saying.

He re-mapped the four programs again so that program One will now be my usual setting, and it's both loudest and most sensitive. (Sensitivity picks up background noises.) So if I really want to hear what's going on everywhere, not just straight across a table from me or next to me on the metro, it'll be One. Program Two is about as loud as One, but not as sensitive. Three is fairly soft--less volume, and even less sensitivity--and it's focused. Four is very soft, and I can't imagine ever wanting to use it, but The King said many people prefer Three or even Four all the time. Everything else is too much.

When I got up this a.m., I put on my processor, now set at program One, and headed out. Running late, I grabbed a taxi. After settling in, I realized I was hearing the news on the radio, not the taxi driver: "It's 68 degrees in Washington; the time is 9:07." This means I was not lipreading the newscaster, but I was actually hearing him. Needless to say, I love it.

For practice last night, inspired by a number of things, I put a new disk in my CD player: The Klazz Brothers & Cuba Percussion's "Mozart Meets Cuba"



All I can say is that if I had a mind left, that disk would have blown it. It's Mozart's tunes played with a Cuban flavor by a bunch of jazz musicians. One thing Restak, the author of Mozart's Brain and the Fighter Pilot, says in the chapter on art & music is "Perhaps Mozart can help you develop the ability to engage in multilevel thinking and thus use your brain in more creative ways." Well, what would Mozart played as Cuban jazz do to a brain? I'd say it'd give it a big boost in functioning. We'll see. My memory is still half shot from the three pain-killers I took after the implant surgery, but it's getting better. However, as mental stimulation, listening to "Mozart Meets Cuba" beats the hell out of watching "Throw Down by Bobby Flay" on the Food Network. Genug with the barbeque, already!!

Cochlear Implant - One Month Later.....

Tomorrow I'll hop on Amtrak and head for Baltimore to visit the audiologist at Johns Hopkins. What a difference a month makes!!

In the beginning, everyone, whether men or women, sounded exactly the same--like Donald Duck. Now people sound like themselves in all their individual richness.

In the beginning, too, music did not sound AT ALL like music. Now Mozart sounds like Mozart, and the Beatles sound like the Beatles. In the beginning, only the words of "Old McDonald Had a Farm," were recognizable. Now I can hear the tune, too (PLUS the COW MOOING in the background!!)

Everyday my implant gives me another gift as my hearing nerve revives under the stimulus of the implant: the best gifts by far have been the conversations I never would have heard before they turned on this implant: at first, just brief chats with store clerks, and finally, last Saturday, hearing my friend Lida's voice clearly and listening to her tell one of her inimitable stories (see "This Week"). Lida has a strong, vibrant voice with a NY accent that's at once earthy and sophisticated. You just might know she'd have a fabulous voice, too!!

But today, the implant surprised me completely! I haven't been able to use the telephone so far, but I ran into my lovely neighbor Patricia at the mailboxes after work. We talked for a bit--"Can you HEAR me???" she said..."You bet!!" She was very eager to try to call me on the phone, and I told her that phoning had eluded me for lack of practice and a number of other technological considerations, too. She said, "Let's practice the phone calling!" She took my number, and I took hers (they're on that list from the condo board, but who ever looks at that--if you can find it!?). Anyway, she ran upstairs, and I let myself into my condo (in which Patricia used to live before I moved in, btw!!) and poured a nice glass of New Zealand white wine. (Sally has a friend who was/is the wine person for Esquire, and she told Sally that ANY New Zealand white was good. Babies, if it's $7 a bottle, I'll take her word for it.) Anyway, with glass in hand, I went in and sat by my two phones (I had to buy another phone to work with this implant. My old phone is for TTY calls, and it doesn't have a T-coil (for use with hearing aids) or a volume control handset. Anyway, I called Patricia's number, and....no answer. Patricia is a real working artist, and a fabulous one at that, and she believes in simplicity in all things, so I don't think she has an answering machine. Anyway, I hung up, and two minutes later, MY phones rang. I hit the speaker phone button and said, "Hello?" and I heard, clear as a bell, "This is Patricia...can you hear me??" I sure could!! We talked for maybe two minutes, then we hung up. Next I called Lida's number, and she answered!! and I heard her voice again! We talked for another two minutes, then hung up.

OK, Peggy....I know I said YOU would get my first phone call, and I would call you right now, but it's 11:44 pm your time, and you are probably in the arms of Morpheus (as they say in the classics). After I've had a bit of local PRACTICE, I'll certainly call you, and you'll be the first person in the fambly to get a fone call from me.

As they say in Northern Wisconsin, "Holy Jumpin' Jesus!!!"

This Week....

This past week began with a welcome sight: elm seeds by the bus stop!! Here they are....aren't they cute? Bless 'em! They spell the end of the tree allergy season for me. But depending on what tree you're allergic to, it can go on a bit longer. The pollen piles up like cornmeal on the walks, and you can see that, too. The amber, stringy things belong to the oak, which is the #1 eye-itcher here.



This week's view across the street from the bus stop. The walled garden belongs to Dumbarton House, home of the first fiscal officer of the United States (they hadn't even started to call this person "Secretary of the Treasury"). The red flowers are azaleas, and the blue flowers?? Well, they're not bluebells.

Kramerbooks & Afterwords opens for breakfast at 7:30 a.m. during the week (it's open 24 hours on Fridays and Saturdays), and this week, I brought my camera along.

The waiters prepare your beverage orders in this little cubby created when they made a third level for dining at the back of the bookstore. It's a cozy spot for breakfast, especially if you love books and enjoy their company.




This week ended with Lida telling me about her plans to donate her body to science.

"When I die," she said....and she paused..."When I die, did you get that?"
"Yes, when you die...," I said.
"I'm 86, you know."
"Yes, I know...."
"I hate funerals!" she said. "I never go to them...well, I buried my father and I buried my mother and I buried my cousin, but that's it! I can't abide that stuff.
When my father died, my mother and I went to the funeral director, a fat guy with a big diamond on his pinky, and he started leading us around showing us the caskets. Finally, after about 10 minutes, my mother (oh, she was wonderful), said,
'Listen. You've never laid eyes on me before, and I've never laid eyes on you before, so stop telling me how I'm feeling about my husband! Just show me the cheapest one!'
So he led us way to the back of this big showroom, way to a far corner, where there was this plain little casket.
My mother said, 'Is that a CHILD'S casket??' and yes, it was.
Anyway, we got the cheapest adult casket, and when we left the funeral director's, she said,'That was a terrible experience. Nobody should ever have to go through that.' Then she said to me, 'When I die, I want you to bury me orthodox.'
Of course, we never went to temple or kept kosher or did any of those other things that make you crazy, but my mother said, 'Orthodox is the cheapest, and it's also the most dignified.'
So I thought that when she died, I'd have to go find an orthodox rabbi and say, 'Hello, you don't know me (you've never seen me in your temple), but....'
Wouldn't you know, before she died, I met this wonderful man, and when I was telling him about my mother's wishes, he said, 'I am an orthodox rabbi, but I don't practice. I can't do your mother's funeral, but my brother, who is also an orthodox rabbi, can.'
So when my mother died, these two wonderful men took care of the whole thing. She was wrapped in a white shroud and buried in a plain pine box. It was simple and very dignified.
But I'm not even going to have that. I'm donating my body to science. NO FUNERAL!!"

She looked pleased with herself now that she has arranged her exit from this plane. Then she went on to tell me that a friend once told her, "Lida, you must have been born with a lucky star over your head."

"It's true," she said. "The most wonderful things happen to me."



OK, but not just yet, Lida. Let's not have that last most wonderful thing you've arranged for your life just yet.

"Plains of Sweet Regret"

The photo above is a video still on the back cover of a gallery handout celebrating The Plains of Sweet Regret, a video installation at Lennon, Weinberg, Inc., 514 West 25th Street, New York, NY 10001. Mary Lucier, an American video artist whose work is known internationally, created this installation on commission from the North Dakota Museum of Art. Saturday, April 28, was the last day of the show, so Cathy and I went up there to see it. Sally joined us, as did Naomi Dagen Bloom, known to knitters, peace activists, and bloggers as A Little Red Hen.

Mary Lucier's subject in The Plains of Sweet Regret is North Dakota, where I was raised and Sally was born. The videography of the plains and its present (shown in vivid shots of local rodeos, wheat fields, and farm animals) and former life (shown in the weathered, abandoned farmhouses and barns) was very moving.

I especially loved Lucier's video of a grasshopper, sitting at once alert and calm in a man's hand. We played a lot with grasshoppers as kids in North Dakota, and the brief, sunlit closeups of the insect captured for me the essence of North Dakota: the simplicity of the landscape and the life, the intimate relationship between people and creatures, and the peculiar luminosity of the light, which is very much like the light you see in the New England sky as you approach the ocean.

Naomi, also an installation artist (see CityWorm) and variously described in Google as an "environmental and performance artist" and a "mixed media environmental artist," brought along a copy of her handmade book, Condom Amulets.



The book evolved from one of her present concerns, safe sex for seniors. She promotes condom use (no longer necessary for prevention of pregnancy) for women over 50. She also celebrated Valentine's Day this year by distributing the free NYC Condoms at an icy subway stop near her home.





Sally and Cathy kept the conversation going with Naomi....I was in a new environment nobody told me about at the audiologist's office: New York City. The city pretty much overwhelmed the computer chips in my CI processor, and I didn't know how to adjust it. So...back to smiling and nodding and responding to anything that sounded like English. It was so bad that, at first, I thought I'd wrecked my processor when it fell on the sidewalk yesterday as I changed batteries, thinking that was the problem. But this morning after a quiet night in its dry box, the processor was working again. Scary to be so dependent on such a little object, but that was a good lesson to learn among friendly companions. Thanks, you guys....I could have asked Cathy to interpret for me, but I thought I'd just wade right in and experience the conversation as best I could. Dumb, huh?

Cochlear Implant, Week 3....

Three weeks ago, they turned my cochlear implant on. Today I was reading Wired for Sound, Bev Biderman's classic report on her experiences after her implant was turned on. And I realized that, disappointed though Biderman was initially with her lack of significant experiences compared with many, she was way ahead of me. I'm a bit disappointed that my results have not been more dramatic or even recognizable. Maybe they implanted the wrong ear....my left ear has much more hearing than the right one did (the one with the implant). Maybe this is as loud and distinct as it's going to get. Maybe the nerve in my right ear has atrophied from long disuse. Other people were having conversations in restaurants and making phone calls right off the bat. Not me. Of course, Biderman was lots younger than I am now when she got her implant. She was a mere kid of 46. Hmph.

Well, Biderman's book is a treasure trove of resources and support materials for implantees, and I need to get with the program. No use sitting around whining.

The magic continues....

While I am learning to interpret what my CI is giving me, I’ve also been involved for the past few days on a voluntary basis in a project that I belatedly discovered is firmly AGAINST cochlear implants, especially for infants and young children--before they are old enough to choose themselves to get an implant. The rationale behind these anti-CI opinions is that there is nothing wrong with deaf babies, and we do not need to fix them. Being deaf, according to these culturally Deaf (with a capitol D) opinions, does not prevent a person from experiencing life and its satisfactions to the fullest in every way.

And here I’ve been thinking that, yes, implanting infants makes the most sense of all! Let me explain.

My life and experience as hearing person prior to 1963 have not really helped me adapt to my CI except in the sense that I do know I can access beauty and information through my ears. I’ve been thinking that audiologically speaking, I’m really an infant with this CI. It’s not my remembered hearing but my BRAIN that is making sense of CI-facilitated sounds. The more sounds I hear, the more I practice listening, the more my brain synthesizes these chaotic, initially incomprehensible noises into meaningful sounds.

For example: the initial birdsongs all sounded alike and boring...”CHEEP, CHEEP, CHEEP”…like those little tin bird whistles you can buy in souvenir shops. Now I hear different birds, different songs (including, memorably, a mockingbird last week!).

Living in the city, I’ve seen emergency vehicles pass by with lights flashing every day. The first sirens I “heard” sounded like a bunch of high-pitched squeaks (or, as I put it elsewhere, "mosquitos with their tits in a wringer"). This morning, while I was riding the bus, an ambulance passed us, and I heard the actual siren. If I also heard the squeaks (and next time I hear a siren, I'll be sure to pay attention to this), my brain has learned to ignore them.

Daffy Duck is alive and well, but he’s been taking voice lessons. People’s voices, which two weeks ago were all flat, indistinguishable, and monotone are now individualized. I can tell Tim’s voice from Linda’s, Linda’s voice from Yinka’s, Yinka’s voice from Anita’s, and my own voice from everyone else’s. All of this has been the work of my brain.

I would guess that it’s the same work an infant does when it learns, finally, to say “Mama” or “Dada” or “I wan jooos!” I don’t remember what I heard as an infant, but the sounds of my own breathing and the rustling of my blanket had to be among the clearest and most identifiable. Then I learned to make sense of other sounds--my mother's voice, the dog growling. At 12 months, Peggy was saying “boog” proudly as she pointed to the Box Elder bugs swarming on the warm porch of our house in Bismarck. Tom used to say “boody” (for “birdy”) when he saw a bird. Now Peg and Tom can say “bug” and “birdy” like champions. But back then, it’s possible they had not heard all of the discrete sounds involved in “bug” or “birdy” in addition to being unable to reproduce them vocally. We call this cute baby language “baby talk.” Babies all over the world do this, and it takes them months to be able to put this into recognizable if imperfectly articulated speech.

My brain has been going through this same accumulation/synthesis process—at age 70! Of course, I’ve learned a few tricks in all that time, so already I can say bug and birdy, but if I hear those words on a recording via my CI without being able to SEE what the words are, they may not yet be familiar to my brain.

The cochlear implant is magical…there’s really no other word for it. Or rather, my brain is magical. Imagine taking this world of sounds and making sense of them! Of course they should implant babies who are born without a functional sense of hearing. Their brains won’t know the difference between what would have been theirs by nature and what is theirs now by technology.

Two Weeks....

Today was two weeks from turn-on day, and I decided to see if I actually could hear some music. I bought a CD Walkman yesterday, so tonight I hacked and wrestled it out of the nightmarish plastic packaging, found a fresh AA battery, and set it up with the only CD in the house: "Beatles 1." Sally must have forgotten it when she was here recently. I plugged the audio cord into my processor, turned everything on, propped the manual on the couch next to me, and tried to figure out the sound controls while the first tunes played. I recognized the Beatles unique beat almost at once...so far so good. After about 15 minutes of fiddling with various small controls, I was preparing to turn it off and find more appropriate music, when suddently I heard, as clear as a bell, "I want to hold your hand." Whaddya know?! That's all I could pick out, and it wasn't musical, but I heard it. That's progress!!

A week and a day....

Yesterday was one week from turn-on. I went to the audiologist with some questions, all mainly having to do with how to get MORE VOLUME from this thing?! Ryan, the audiologist, mainly told me to have PATIENCE and to quit fiddling with the processor!! He said my BRAIN is gonna do all the heavy lifting from now on, and that I should just stick with the standard program (as he set it). He said that some day in the future I would arrive at that happy place where I would not have to STRAIN to hear anyone talking, and that I would be able to identify (and subsequently ignore) background noises. Wow.

So I've been good. I went and got a new permanent last night after wurk. I was soooo tired to seeing my fine hair sprawled all over....like Flannery O'Connor's "her hair was like ham gravy trickling over her skull" (think I've mentioned THAT before). Anyway, everyone seemed to like the curls today, including me. I woke at 2 a.m. this morning to the sound of something FRYING in my right ear, and I was worried that the permanent fumes had penetrated to the implant and was cooking it to death. But then this a.m., the frying sound was gone, and the implant worked just fine.

Meanwhile, I can distinguish BETWEEN voices now (including my own North Dakota accent), and I am hearing a few more variations in the birds' songs. And I could TALK with people: the guy in Georgetown Optician, where I picked up my new glasses after work, and the young woman in the wine shop down on P Street. I can't say I liked the wine all that much, even though she said it was "GREAT!" It was a Bastianich wine, and I told her how much my daughter loved Becco in NYC and admired Lidia Bastianich. That conversation would never have happened last week. I also got her to order some Frascati for me, which now is available only at Rodman's and Litteri's here (well, probly lots elsewhere, too, but you know....I am just a little old lady in tennis shoes, and I don't rod around much). But, gee....thanks, dear universe, for that CONVERSATION! what a great treat that was!!!

Day Three and 5/6ths....One last revelation

By accident this a.m., I turned on the TV (to get the disk--"Harold & Kumar Go to White Castle"--out to send back to Netflix). The TV turned itself on, and I saw maybe two minutes of some interview show. Alas, television is even more banal when you can hear it than when you have to read the captions. That is, it's breath-takingly DUMB.

Of course, there's good dumb...a category in which "Harold & Kumar Go to White Castle" is firmly set. Nobody's ever accused me of having too much taste.

Day 3: Revelations...

The wind in my hair....sounds like several hundred thousand fairies, each holding up one strand of hair between their cupped hands and blowing on it--like we used to do with blades of grass in the summertime...remember?? Today is windy...ergo, LOTS of sounds to figger out. (Well, I SAID I was hearing EVERYTHING, right?)

Being able to TALK BACK AND FORTH with people....is very RELAXING. I've been going around with this goofy grin on my face all day once I figgered that out. It's just fun.

My voice sounds....less loud, less gravelly (or so I'm told--via the implant, everybody sounds just exactly the same, myself included). Gee.

I can still hear myself breathing and all the rest....if I pay attention to it. I've learned in just two days to ignore it completely!

Some computers....make hissing noises! Must be Macs, cuz mine at home does it, and so does the one here. The others don't hiss.

Sirens sound like....mosquitoes being tortured. Not loud, just weird.

HMMMM.....

Do you suppose babies go through this process of converting all these minute splinters of noise to meaning?

Day Two: The Manual....

Went back to Hopkins for turn-on #2 today, and Ryan the audiologist added two more programs--which I don't know how to use yet cuz I'm still learning how to work the switches! Meanwhile, Cathy met me for lunch at Union Station after I got back, and the background noise was overwhelming. One of the new programs is for situations just like that, but I couldn't figure out how to switch to it. The MANUAL was at home, not in the big box of accessories and other necessary items Ryan asked me to bring along today! Cripes! They never told me there'd be a manual!

We did leave Union Station for a quieter spot, and sure enough, recognizable sounds started turning up again. I actually heard Cathy's laugh--a great sound. We've known each other for about 10 years and in all that time i've never heard her actual laugh, even though she's a cheerful soul and laughs a lot.

After I got home from lunch, I took a loooong nap. (No, I didn't have any wine...just a glass of rosemary lemonade, which was just fabulous.) But when I woke up, oh, no! The damn thing did not work at all!!! Couldn't even get the magnet to stick to the implant under my scalp. I was just about to go get the big box of CI stuff to change the magnet when it dawned on me (helloooo, m.e.....) that i had it on the wrong ear! Er...ahem!

When I got out of the taxi this aft after lunch, the birds were singing loudly in our neighborhood. What a lovely sound!

Turn-on #3 is five days from now, Monday, when Ryan'll add some "features" (described in the MANUAL!) and see how the CI is working. I hope I'll have figured out how to listen to music. The taxi driver this aft in DC was playing music on the radio, but I heard it with my OTHER ear...the little deaf cousin who lives across the vacant lot. Who knew?

Day One: What I Heard Today....

A series of double beeps of various tones
A rattle rattling (my favorite of the audiologist's noisemakers)
A little hand bell (which did not sound like ringing)
Birds (every time I was outside)!! Yay, birds!
The doorman's whistle as he summoned our cab
The arrivals/departures board flipping every time a train moved up
Money falling on a counter
The public address system in Baltimore's Penn Station and on the train (as a disparate sound--weebly oobly--from the background noises)
Sally and Cathy talking (but not recognizable as human speech)
Myself talking (ditto)
The pager keys tapping as I typed
The computer keys (ditto)
Two or three test sentences ("It's a nice day today" is only one I remember)

Note on pager, 11:55 a.m.: "Waitin fr train back to dc. It's incredibly different to hear all these sounds I haven't heard for over 40 years. But it's not like HEARING. It's like hearing every single particle of every single sound and not knowing how they fit together. V interesting! Back tmw for more tweaking. I can't have it up as loud as I need just yet. [And only have two of the 4 programs installed so far] Also, it's like hearing splinters of MUSIC."

Yeah, music...who could have predicted this?

Note on pager, 4:07 p.m.: This is a trip! I cn hear the keys on this thing clicking fr the first time. And I cn hear Sally and myself speak [Cathy in another car], but it doesn't sound like talking yet. Can hear self chewing crackers....munch, munch, munch. Best of all, when I go outside, I DEFINITELY CAN HEAR BIRDS! Dunno wot kind, but birds fr sure. very reassuring, them birds."

Most of the time I hear weird background-kinda noise--eggs frying, crickets having a rock concert. Having the TV on in the other room was too distracting--had to shut it off.

Peggy called while we were in Baltimore Penn Station waiting for the train back. Sorry I could not hear you over the phone, Peg-o, but once I get the hang of phone calls, you'll still be the first person I call.

I keep thinking of the whole cognitive question. I asked Ronniecat if she'd noticed any cognitive changes since she got her implant. She's thinking on this and will write about it when she formulates her reply, but I can think of one: how the brain takes all these tiny splinters of music and comes up with the recognizable sound of a human voice speaking. My brain as processor seems to be waaay out of practice. Except, there's so much missing. Hmmm...

Well, it's changing hourly. I'd go back outside and listen to some more BIRDS, though it's past their bedtime.

One other thing that is very nice about the implant sound is that it's not painful or overwhelming or constantly stressful like with hearing aids. LOUD sounds are just different--so far, anyway. Now that I'm not hearing with a hearing aid, I realize this. One step at a time.

Oh, man!! Two more sounds I just picked out of the haze: my soda fizzing in the bottle as I lift it to my mouth to take a drink, and myself breathing! So all this breathing sh*t is what's contributing to the background noise!! How do you hearing people DEAL with this???

This is fun. This is very different from what I could ever have imagined it to be. This is like learning Martian.

Thanks to dear Cathy and Sally for being with me today. No gurl is an island.

DAY ONE AND A HALF....

I'm realizing that I'm hearing EVERYTHING...even the individual fibers in my shirt scratching together when I move my arm!! Hearing folks must just tune this stuff out completely. Ha. They'd have to or they'd go nuts.

This must be why one of the most devastating experiences as my hearing went away was when I could no longer hear myself walking around. I felt like a ghost.

She's ready!

My implant has proven so lifelike, I've given it a name: Arbella. Arbella also is the name of the woman (Lady Arbella Stuart) I firmly believe wrote the plays credited to Shakespeare--or many of them, anyway. She's the only one who COULD have written them. She was a member of the nobility, lived in the royal palace, and could read and write four or five languages. While the actor William Shakspere's peers in birth and education were writing urban comedies (which Shakespeare never wrote), Shakespeare's plays were set in royal palaces and in various cities in Italy. Arbella led a list of prominent writers in Shakespeare's time, a list on which William Shakspere was nowhere to be found. Shakespeare's plays are famous for their strong women. I submit that's because the person who wrote these plays was a woman. Many of Shakespeare's plays were first performed before the Queen, also. None of his peers' plays enjoyed such a venue on their opening nights.

My Arbella is raring to go. She hears my fingers scratching my right ear, and she is alert to taps on the knob on my skull. Tomorrow in less than 10 hours, Doogie Howser will turn her on, and as my mother used to say, "we shall see what we shall see."

"A JOYFUL NOISE" ....CI and a 9-year-old girl

Ex-Shammickite sent an article from a Canadian newspaper about a 9-year-old girl who began losing her hearing when she was 3. Hearing aids worked for a while, but then they became ineffective. Now at age 9, she has received a cochlear implant, and the title of the article is "A Joyful Noise." It took her six months to get used to the implant, but now she sings and plays the piano. Congratulations to this brave little girl whose world has opened up dramatically with the addition of sounds, imperfect and limited though they be. I am reminded of one of my favorite sayings from the original Whole Earth Catalog: "What most you fear is where the gold is."

http://www.thetelegram.com/index.cfm?sid=18184&sc=85

[Thanks, Ex-Shammickite for sending this along. I've been admiring your "zipper in the sky photo" and the spotted dog next to the fairy door. Your blog won't let me comment, though. We have fairy doors here in Georgetown, too, but the mice use them....]

[Miscellaneous CI tidbit: The building in which I work every weekday also houses the Cochlear Implant Education Center, mainly focusing on information for parents and teachers of deaf and hard of hearing children. Its director, Deb Nussbaum, is a gracious, knowledgeable lady. She has written an article on the Clerc Center website about navigating the forest of information about CIs, one tree at a time.]

Cochlear Implant 15...GUEST BLOG

Ronnie, the author of a great blog on hearing loss and other events in Canada, our friendly neighbor to the north, has graciously agreed to let me post her activation story as a guest blog. (At last! Something interesting!!) Here's Ronnie's post from her day of activation in 2005:

Turning the damned thing on; or, what kind of Mickey Mouse setup is this anyway?

Driving across the MacDonald Bridge to the activation appointment, Husband and I confessed to each other that we were both hella nervous. More nervous than before the surgery. Or nervous in a different place, anyway.

It took quite a while to unpack all the basic compontents, which each come separately packaged, and about which more later. 'Helen', the audiologist I will be working with from now in, showed me how to put the basic unit together and then she put it on. I was almost surprised to discover there really is a magnet under my skin and the headpiece really does attach!

Helen handed me a card with a range of comfort levels on it - from "inaudible" through "barely audible", "very soft", on through "comfortable" "loud but comfortable", up to "painfully loud".

"You're going to hear a series of beeps," she said (I was part-lipreading, part reading notes Husband was writing for me). "When you do, I want you to indicate on the card how loud they are and we will adjust them."

I swear, as God is my witness, when she said "You are going to hear a series of beeps," my internal response was, "Yeah, right!!!" I just could not let my guard down and believe this was going to work.

She turned to her computer - which my CI was plugged into - and I grabbed Husband's hand.

And then, I heard a beep.

It was deep inside my head... as if that "silent voice" that you hear in your mind suddenly vocalized to you. I was astonished. I jumped in my chair and my head snapped involuntarily. I gripped Husband's hand. There were more beeps now, and I was struggling to calm myself down enough to remember what we were supposed to be doing.

"Uh...uh... s-soft... soft, I would call that," I stuttered, jabbing at the "soft" level on the card. "Okay, I'm going to turn it up," Helen said. I heard what she said and understood it. She turned the sound up. "Yes, now, now it's louder. That's, uh, comfortable." I looked over at Husband and burst into tears.

"Ahh," Helen said, reaching for a box on her shelf. "This is where we get out the tissues."

I sobbed into the tissue. "I don't think I let myself believe it was going to work," I said. I looked up and Husband was crying into a Kleenex as well. And so, I realized, was Helen. "You have the best job in the world," I blurted out.

Once we all composed ourselves, there was a lot of work to be done. Each of the electrodes had to be individually tuned to a level which was loud enough to hear but not uncomfortably loud. I realized that as long as I was facing Helen or Husband I could hear and understand whole sentences, although everyone's voice sounded like Mickey Mouse on helium. (Interestingly, I could not tell Helen's voice from Husband's initially, although as the appointment progressed he started to sound like his own voice again.) Helen was surprised that I could understand so much so quickly (she'd only had two other patients who could understand complete sentences at activation, she told me - one, an 81-year-old woman) but told me that of course the Mickey Mouse effect was normal and everyone experienced it.

The whole process took about two hours and was pretty intense. I realized how much of this is going to depend on me; Helen can't hear what I hear and relies on feedback from me to tune the device. I, however, don't know what an implant is "supposed" to sound like, so I hope I am making the right choices regarding loudness levels and so on.

Helen asked if mechanical noises - knocking on a desk - sounded different than more variable, organic noises like voices. Oh, yes, I assured her. Very different.

We later saw 'Stacy', the speech language pathologist, who asked me some questions with her mouth covered by a black hand-held screen (so I could not lipread). Although I had to ask her to repeat the first question, I understood all of them and responded correctly.

As we left the clinic the audiologists reminded us that it was going to be difficult in noisy situations, and that it is a "noisy world out there". As we strolled down the sidewalk in Halifax I caught tiny snippits of conversation as people went by - just noise, really, rising and falling as they passed. We walked past an HMV store. I stopped dead in my tracks.

"Music???" I said.

Husband laughed. Yes, they were playing music outside the store to lure in customers. I could tell that it was melodic but couldn't identify what it was or even what genre it might be.

We went out to dinner that night and it was really hard. Everyone in the crowded restaurant sounded as loud as Husband. There's still quite a ways to go to figure out how to understand this thing.

They sent us home with a great big box of manuals and videos and accessories and gadgets, some of which were a complete pleasant surprise because I didn't know they came with the original kit.

The CI itself, for the techno-curious, breaks down into these components, and when not in use, it's pretty much put away broken down this way, too:



You'll note there are three earhooks in this picture; all three came with the CI but each has a different purpose. The standard one is just what the name implies; the t-mic is best for use with telephone and using with t-coils and other assistive listening devices (some people, like me, however, find it gives the best day-to-day results, so it is my usual hook), and the extremely cool direct connect earhook, about which more later.

The whole thing comes together like so:



One of the accessories I wasn't expecting but was really glad to get right away was a direct connect cord. Believe it or not, when I am wearing the direct connect earhook, and plug this cord into that earhook, I can plug an audio device like my discman or my computer directly into the CI and therefore directly into my cochlea. Isn't that amazing? This, for example, is how it connects to my discman.



When I'm wearing this setup, I can hear ambient noise and also whatever I am plugged in to; but an external listener cannot hear the discman or computer. For now, I've managed to listen to some of Husband's music with it (music is MUCH BETTER through direct connect than through the air) and done some computer gaming, but I need a lot more practice before I can interpret such complex things being piped directly into the cochlea.

Well, hearing is all very well and fine, but a girl has to look good, and I was tickled pink that they threw in some of the snap-on covers that let you change the colour of the unit. I don't know how well you'll be able to make this out, but here are the four "blending colours" (designed to blend with hair, obviously)and the four "Sophista metallic (don't you love marketing?) colours" which are dark metallic green, blue, purple and (on the unit) red. Very sharp if I do say so.



Finally, this is what it looks like when I'm wearing it, more or less; normally in daily use my hair would probably cover the headpiece (disc) more because I'd try to get most of it out of the way of the connection between the magnet and my scalp. (At least most of the bald spot is covered now but in order to achieve that, I'm dead shaggy and badly in need of a haircut!)



It's been an absolutely wild two days and there is so much more to talk about but this post is way too long as it is. I will just finish by adding that when I got home I begged Mojo (the vocal one) to meow for me. "Make a noise, Mojey! Come on. Meow! Come on! Make a noise!" No dice. So I made the ASL sign for "hungry".

"MEOW!" he bawled. I hear ya, brother.

[NOTE from XE: My CI won't look exactly like this, since it's made by a different manufacturer. I also turned down the various color panels--especially the leopard print!!]

E-MAIL, BLESSED E-MAIL

And even more fun is the e-mail she send this evening. She's a gracious and generous writer to be telling me all this stuff. I feel very lucky she stumbled on my blog. Talk about synchronicity and serendipity!! Thanks, Ronnie...what a gift!

...
I had convinced myself quite seriously and sincerely that there was no
possible way this was going to work so I was completely astonished when I heard the first soft "bong" inside my skull. That's how it felt - like the noise was *inside my head*, like the "voice in your head" had suddenly vocalized. I mean, I can't *describe* how astonished I was, and that was after only a year of deafness. You've been deaf a lot longer than that, so be prepared :)

The most important thing I want to tell you is not to be put off by your first experiences with the implant. (As in, the first day or days.) I remember while waiting for my implant, I posted on my blog about a website I'd found where a guy posted sound files of what his first implant sounds sounded like. (He ran a sentence through some kind of filter until it was as close as he could get it to what it sounded like on activation, and then after a couple of weeks). I noted that it was ironic that, being deaf, I couldn't hear them so still had no idea what to expect!

Well, after posting that message to my blog, something strange happened. I got one email from a friend, then another. Then another and another. They were all, "out of the blue", urging me "Not to be discouraged" when I was activated, "Not to be frightened" of my first results, "Not to give up" if things didn't seem to be going well at first. I thought it was awfully strange, this sudden outpouring of concern for my emotional strength following activation. It wasn't until much later, when I revisited the website, that I put two and two together. After my blog post, my hearing friends went and listened to the files and were so horrified by what they heard that they immediately rushed to reassure me (without, of course, telling me
*why*, so as not to scare me).

Well, as it turns out, my own first sounds weren't nearly as bad as the robotic voice on that website so they needn't have worried. Everybody's voice sounded identical, and far too high (Minnie Mouse after inhaling helium). It was not until the night of the first day that my husband started to sound like himself again.

I am going with the assumption that your path back to hearing is going to take longer than mine, because your hearing loss has lasted much longer. I don't know how much memory of sound you have. Whatever memory you have, begin exercising it. Think about how it used to sound to hear a car go by, a dog bark, a person speak, music playing. The reason is because this is a very real training process you're going to go through in the beginning. You are going to hear an indecipherable "blat!". Then you're going to think (in nanoseconds), "There is a truck over there." And your brain is going to go, "Wait, wait, that 'blat' was recognizably what a truck horn used to sound like." And soon the connection between that sound and "truck horn" will be automatic and part of your everyday life. So you will need to use all your memory of sound to help connect the dots. How people deaf from birth are able to successfully learn to
hear with them is a real miracle to me, because at least in my case, that "training" relying on my memory of hearing was a very real and present process. Of course, the human brain is an inconcievably amazing instrument, and yours will do whatever it needs to do to connect the dots.

However, deaf-from-birth people do learn to hear successfully with them, so even if your memory of sound is not strong, it isn't a non-starter.

As for using the phone, I would tell your sweet but overexcited friends to cool their jets a little bit :) I was not able to recognize speech on the phone for a couple of weeks, I believe, after the activation. Your mileage may vary and I hope you can do it from day one, but I wouldn't encourage you to expect to be able to. [NOTE from XE: You mean, like, don't call us, we'll call you??]

Finally as for music: music is really, really complex and is the most challenging thing to hear and understand. Don't expect to hear anything recognizable as music right away - if you have unrealistic expectations I fear you may you fool yourself into being disappointed too early. Do keep in mind that your recognition and enjoyment of music will improve and improve over time (in my case, it did dramatically, but the first several months music on the radio was a muddy mess of percussion and sound). If you have a CI processor as I do that can plug directly into devices like iPods or computers (one of my processor "earhooks" has a place to attach a cord which I can then plug into any standard-sized speaker inlet), you'll find it 10,000x more enjoyable. You may also find, as I do, that live music and music played on a good-quality stereo is much much easier to interpret and enjoy than music from the kitchen or car radio.

...

I suppose I've bored you into a coma, or else I've terrified and worried you, neither of which was my intention. It's just that I know how you're feeling right now - you simply cannot IMAGINE how this is going to work or feel, and it's the scariest part of the trip, much scarier than the surgery, I found. So I want to make sure you and your support system are not needlessly disappointed (i.e. expecting to use the phone right away only to discover you can't) while also sending you every bit of my support for the exciting adventure you're about to go on as the alien noises rapidly change and morph and every day you amaze yourself by discovering something new (the clock ticking on the wall of my office irritated me. Hooray! And yes, I overhear conversations. You do *not* want to hear cell phone conversations, I promise you, but you will).

Cochlear Implant 14...Patience!

It's less than two weeks now till activation (turn-on) for this CI. I am beyond excited, but also chary about the whole thing. What if it doesn't work? If so, I won't be the first person to experience a grand failure. Having a cochlear implant is not the same as hearing. It's simply and profoundly the new manifestation of my deafness. Because whatever happens, it won't be the same as hearing as I remember it--sharp, clear, effortless. It'll be more work as I learn to identify what I'm hearing.

What has it meant to be deaf all these years? In my case, because I communicate with nonsigning hearing people largely through lip reading, it has meant I spend a lot of time on the edge of conversations waiting to see (hear) the ONE WORD that will make all the other words make sense. It has meant I've spent a lot of time in noisy restaurants almost bored but not fidgeting, smiling and laughing at jokes I haven't really heard. (All those Holy Thursday High Masses in Latin, which we school children had to sit through quietly without understanding a thing we were hearing, was great training for being deaf.) It has meant that as things have fallen out of my experience--crickets, the ineffable sound of the cottonwood tree (called the "singing tree" by the Native Americans) that I loved so much, the incredible variations of the mocking bird--I've had to let them go, and I've probably forgotten many, many sounds even exist. One woman was startled by the sound of frogs croaking in a marshy pond near the audiologist's office when she left the building on activation day!

Family, friends, neighbors are very anxious for my implant to succeed. They want me to be able to hear again the minute the audiologist turns it on. Mary Lou's promise, "I'm going to call you on April 3 and see if you can hear me," is typical. But what if I can't? What if the sound produced by the implant in conjunction with the processor is so strange I can't figure it out at first? This happens to many people. Some CI recipients have described people's voices--even their own--as "hollow, toneless." One woman said her little dog barking sounded like "a cow mooing in a barrel." Bev Biderman's book Wired for Sound details the long process she went through to make sense of what she was hearing. Among other things, she listened to a tape of Make Way for Ducklings while reading the children's storybook at the same time. Biderman is my hero in that she simply refused to give up. She knew what she wanted from this implant--to understand speech, to listen to music--and she went after it.

What if I can understand almost everything right away? What if I can hear speech but not music, or vice versa? [Ha...I'll never forget the looks I got back in the early 1960s when I asked, "What song is that playing on the radio?" "Um...Jingle Bells."]

Among other things, I want to OVERHEAR. I want to get on the bus in the morning and OVERHEAR what people are saying into their cellphones. [I know, I know....] I want to hear the rhythm of everyday speech of all kinds of people: the DC taxi drivers from all over the world, my neighbors--from Argentina, Brazil, Chile, Florida, New York, Pennsylvania, Sweden, and Virginia--our secretary from Nigeria. And my best friend, who was born and raised in Baltimore and, save for two years in France and one year in Arizona, has never lived more than 25 miles away from her birthplace. And my children and grandchildren...what do they sound like now?

The world of sound I'll reenter is far different from the one I left in 1963. I can't quite believe I had the nerve to go through with this. As the ineffable Martha says when talking about our class reunion, "It'll be interesting...and possibly even enjoyable." More than that, surely!

Cochlear Implant 13

I have a lot of spare parts these days: one cochlear implant, three stents, two hearing aids, one plastic lens (thanks to a cataract), a few dental things, eyeglasses. Isn't modern medicine...what's the word?....wonderful?

Day 13...Here's where Iyam....

The incision

This is healing nicely. No more scabs to pick, and I'm enjoying scratching my scalp. Cathy gives me hell for this, but it FEELS GOOD. Further, I still have 5 different colors of hair on my head. This is a genetic variant common among the Celtic races. The reason I know I still have all five colors is because some of the scabs I've picked have had little BLACK hairs in them--mine, all mine. Even though most people would describe me as "strawberry blonde," it's a mixture, an illusion, folks. Further, people on my mother's side of the family especially don't get grey so much as their hair color simply f a d e s away.

Curiosity

People are very CURIOUS about this operation, and I spend part of every day doing show & tell.This mostly grosses them out, but now they know. This is an OPERATION in which there is cutting and bleeding and that. But they are reassured when I show them that it's all growing back together. One of my ears has wound up lower than the other, and it sticks out farther, and it's kinda RED. But that's getting better (i.e., going back to normal). They GLUED the ear back after cutting it loose to scrape out an indent for the CI. The glue did not hold perfectly. They say even the slightest cut on a woman's face is very traumatic. Hmm...I've been through this before with eye surgery back in the 70s. It IS weird, but there are other, better things to be thinking about....like impeaching George W. Bush.

Ringing in my ear

This is calming down a bit, but I still get two variations fairly often: the symphonic (when I bend over or cough), and the "New Year's Eve in Times Square" when I take me pills at night. Better living through chemistry just sets it off. Doesn't last long, but it's spectacular.

Taste disturbance, black eye, etc.

Thanks be, my sense of taste has returned--and (not so hot) brought my appetite back with it. Just when I'd lost almost 10 pounds, too. The bruising has mostly gone from my face and neck.