Its been a few days since my last posting. Lots has been happening. Dad hung a gorgeous wind chime just outside my door on a tree branch. It was a gift from a friend of mine last summer, and I was amazed at how beautiful it sounded. My CI could pick up every different ringing tone..I keep going back to it to make it ring!! Lol. Oh for a windy day!
I've also gone down to the beach...the sound of the waves was just as I had remembered it. So soothing, crisp and clear. I just continue to be amazed at what I can pick up with this thing. Like the other day I was sitting down in my room and was hearing these "snap/crackle/creak" sounds and couldn't figure out what they were....eventually I was able to discern that the sounds were
actually coming from above me - when my parents walk across the kitchen floor, the floor creaks! I never had any idea it did that.
I went to a birthday dinner party on Friday for my sister-in-law and had a great time. Although it was a bit difficult following all the conversations (there were 17 of us at the restaurant) I think I did pretty damn good! The only problem is that sounds seem to come at the same intensity initially. I'm learning to "tune out" some sounds but others are harder. When everybody is talking at the same time to different people around the table its very confusing and I find it hard to focus on one particular voice. I'm sure that will come with time.
After the party we went to a bonfire. Oh man the sounds of the wood sparking and crackling was just awesome. I was totally mesmerized by it. It used to be that just the sight of something could catch my attention and soothe me, but I'm finding that some sounds can do that too (the waves on the beach were the same.)
I'm getting more and more "words" out of the jumbles I hear. I'm becoming much more attuned to my mom's voice and quite often can pick out words and even sentences of what she says to other people when I'm not looking at her. I'm also picking out words/phrases on the TV when the closed captioning isn't even on and its just voice in the background (like during advertisements). There will be this "blah blah blah" jumble, and then some words will pop out clear as day. Sometimes I find myself second guessing - did I REALLY "hear" that? But yes its true that the words are coming through and I'm understanding them. Its just amazing.
I'm pleased with the progress so far. I dont use Program 3 on my CI at all - its only marginally better than my hearing aid was. Program 2 is *louder* but I'm learning quick that loudness does NOT necessarily translate into clarity. Its Program 1 that is giving me the clarity of sound and the ability to understand words.
I go back to Vancouver on May 6 for my first follow up and I'll make a post when I get back, if not before :)
Monday, April 25, 2005
Tuesday, April 19, 2005
Its a noisy world out there!
I can't believe its already been 6 days since I got my CI activated. Everything is going past me in a whirlwind. New sounds..each day..hell sometime each HOUR.
Last night I hooked my Dad's speakers up to my computer and tried out voice chatting with some friends on Yahoo....and WOW! One of my best friends was totally blown away when I was actually able to understand a little what he said when he spoke slowly and clearly! I can't yet follow speech at a regular pace, but hey - this is a start!
Tonight I was walking past the TV at 11pm and the news came on. The closed captioning wasn't switched on, but I just happened to stop and watch it for a couple minutes, and was *totally* able to understand every word the announcer said!!! True- I still have to rely on lipreading to a point, but understanding what people are saying on the TV without the CC on is wonderful!!!!!
I'm finding that I'm only getting about 2 days out of my batteries with my preferred program. I have three to choose from (though being that I'm in a clinical trial, they won't tell me just WHAT each program is until later so that I can make a choice without bias.) I'm finding that I'm preferring Program 1 to the others. With Program 1 the sounds seem "crisper" and clearer. I have a greater sense of the different tonal ranges with voices and other sounds - like music. Program 2 is good too but sounds seem to be a bit muted, almost as if they are being echoed through a tunnel. I don't like Program 3 at all. Sounds are not clear, and everything seems to run together.
I will have to wait till mid-May to get re-mapped and have everything turned up a bit. I'm noticing a slight eye-twitch with a few sounds when I use Program 1 so that will have to be adjusted. I'm hoping that they will be able to figure out how to totally eliminate the twitching and re-add the 5 electrodes that were removed.
I was singing along with some songs again tonight - singing used to be such an important part of my life when I could still hear. Its just so wonderful to be able to embrace that part of life again. I was told that I might not like how music sounded, and/or it might take several months before I understood or appreicated it, but it seems to be coming back at me just like flipping on a light switch. I just LOVE MUSIC. It fills me with such joy to be able to play a song and understand it!
So I was playing some songs from the Oh Brother, Where Art Thou soundtrack (I'm finding that I like listening to bluegrass more than most other musics because the vocals are not overwhelmed by the music as is a common thing with a lot of other styles.) I was singing along with "I am weary, let me rest." My Dad heard me playing the music and came into my room and heard me singing along....ran upstairs and grabbed my Mom and dragged her down to my room and they were both listening to me sing....and Dad said I was actually singing IN HARMONY with the music!!!!!!! I didn't even know it, I used to sing very monotone, naturally being that I couldn't hear my voice - but both of them said that I was carrying the tune almost perfectly and I wasn't even trying! Blew me away (and them too!)
I'm going to see about getting voice/vocal lessons. If I were in Vancouver, Dr Pijl said he'd probably schedule me to have speech therapy, so we suggested voice lessons and he said that was a great idea. So I'm going to talk to a friend I have who has a daughter who sings and find out who her voice coach was and see if they'd be willing to take me on for an hour a week or so.
I'm amazed at what a noisy world it is. I'm also beginning to find the first sounds that annoy me. Repetitions seem to distract me - like my clock ticking (had to move it farther away from my desk.) I'm starting to be able to tune out some sounds - at first the fans on my computer seemed to be abnormally loud but now they're fine, though I can still hear them.
I came across a poem by Shel Silverstein (one of my favorite poets) that made me stop and think, because I could see it applying to me in the situation I am in right now. I told it to my Mom and she said it gave her shivers down her back...because she can see exactly what I mean regarding whats happening in my life right now.
The Bridge
This bridge will only take you halfway there
To those mysterious lands you long to see
Through gypsy camps and swirling Arab fairs
And moonlit woods where unicorns run free.
So come and walk awhile with me and share
the twisting trails and wonderous worlds I've known.
But this bridge will only take you halfway there -
The last few steps you'll have to take alone.
I think it fits - my CI will only take me so far in life, unless I'm willing to take the steps to work with it, and keep pushing my limits. It will only get better from here on - I know it :)
Last night I hooked my Dad's speakers up to my computer and tried out voice chatting with some friends on Yahoo....and WOW! One of my best friends was totally blown away when I was actually able to understand a little what he said when he spoke slowly and clearly! I can't yet follow speech at a regular pace, but hey - this is a start!
Tonight I was walking past the TV at 11pm and the news came on. The closed captioning wasn't switched on, but I just happened to stop and watch it for a couple minutes, and was *totally* able to understand every word the announcer said!!! True- I still have to rely on lipreading to a point, but understanding what people are saying on the TV without the CC on is wonderful!!!!!
I'm finding that I'm only getting about 2 days out of my batteries with my preferred program. I have three to choose from (though being that I'm in a clinical trial, they won't tell me just WHAT each program is until later so that I can make a choice without bias.) I'm finding that I'm preferring Program 1 to the others. With Program 1 the sounds seem "crisper" and clearer. I have a greater sense of the different tonal ranges with voices and other sounds - like music. Program 2 is good too but sounds seem to be a bit muted, almost as if they are being echoed through a tunnel. I don't like Program 3 at all. Sounds are not clear, and everything seems to run together.
I will have to wait till mid-May to get re-mapped and have everything turned up a bit. I'm noticing a slight eye-twitch with a few sounds when I use Program 1 so that will have to be adjusted. I'm hoping that they will be able to figure out how to totally eliminate the twitching and re-add the 5 electrodes that were removed.
I was singing along with some songs again tonight - singing used to be such an important part of my life when I could still hear. Its just so wonderful to be able to embrace that part of life again. I was told that I might not like how music sounded, and/or it might take several months before I understood or appreicated it, but it seems to be coming back at me just like flipping on a light switch. I just LOVE MUSIC. It fills me with such joy to be able to play a song and understand it!
So I was playing some songs from the Oh Brother, Where Art Thou soundtrack (I'm finding that I like listening to bluegrass more than most other musics because the vocals are not overwhelmed by the music as is a common thing with a lot of other styles.) I was singing along with "I am weary, let me rest." My Dad heard me playing the music and came into my room and heard me singing along....ran upstairs and grabbed my Mom and dragged her down to my room and they were both listening to me sing....and Dad said I was actually singing IN HARMONY with the music!!!!!!! I didn't even know it, I used to sing very monotone, naturally being that I couldn't hear my voice - but both of them said that I was carrying the tune almost perfectly and I wasn't even trying! Blew me away (and them too!)
I'm going to see about getting voice/vocal lessons. If I were in Vancouver, Dr Pijl said he'd probably schedule me to have speech therapy, so we suggested voice lessons and he said that was a great idea. So I'm going to talk to a friend I have who has a daughter who sings and find out who her voice coach was and see if they'd be willing to take me on for an hour a week or so.
I'm amazed at what a noisy world it is. I'm also beginning to find the first sounds that annoy me. Repetitions seem to distract me - like my clock ticking (had to move it farther away from my desk.) I'm starting to be able to tune out some sounds - at first the fans on my computer seemed to be abnormally loud but now they're fine, though I can still hear them.
I came across a poem by Shel Silverstein (one of my favorite poets) that made me stop and think, because I could see it applying to me in the situation I am in right now. I told it to my Mom and she said it gave her shivers down her back...because she can see exactly what I mean regarding whats happening in my life right now.
The Bridge
This bridge will only take you halfway there
To those mysterious lands you long to see
Through gypsy camps and swirling Arab fairs
And moonlit woods where unicorns run free.
So come and walk awhile with me and share
the twisting trails and wonderous worlds I've known.
But this bridge will only take you halfway there -
The last few steps you'll have to take alone.
I think it fits - my CI will only take me so far in life, unless I'm willing to take the steps to work with it, and keep pushing my limits. It will only get better from here on - I know it :)
Sunday, April 17, 2005
The Antiseptic Baby
Its been a intermittent rainy/sunny Sunday. I've had the CI now for 5 days and each day brings somethign new and wonderful. Yesterday I spent the afternoon down at the Legion with some friends, and had a great time. They are a fantastic group of people, and there were several that I had always had a very hard time lipreading. Some I could not lipread at ALL, and I was understanding almost everybody! There were quite a few teary eyes too when friends realized I was hearing and understanding them.
On the way to the Legion (I decided to walk- its only a mile away) it was just wonderful. I could hear dogs barking, birds chirping, I could tell way beforehand if a vehicle was coming up behind me on the street.
I find when I'm IN a vehicle its more difficult - the sound of the engine itself drowns out other sounds, but I'm sure as I learn to "listen over" some sounds, I'll be able to filter it out with time.
I heard the rain on the hood of the truck the other day. It was such a wonderful sound. I find myself stopping beside my Mom's fish tank a lot - she has a raised water filter that runs back into the tank, and the sound of the running water is just beautiful. I like to just stand there and listen to it. My hearing aids could never pick up that sound, water was just a blurry rushing noise, never something crisp and clear.
I'm realizing what a noisy place the world is. I probably knew that back when I could hear, but being a child, one doesn't really learn to appreciate what one hears. We had Evan over this afternoon while my brother worked on my car, and he'd laugh and giggle, and babble away and it was just music to be able to hear his voice. I'm so thankful for the chance that has been given to me to experience this again.
I'm finding that often voices are still a jumble of sounds....and then, out of the blue a word or 2 or 3 will come through clearly. When those words come through, sometimes I do a double-take. Did I REALLY hear that? I'm not just imagining it?
I've been going through my movie collection a bit at a time - just hearing everything from a new perspective. I watched Aladdin and Sister Act II and the singing is just beautiful. I had forgotten
Robin William's voice.
I want to rent some of my old favorite musicals - My Fair Lady, The Sound of Music, Chicago, A Chorus Line. I always LOVED the musicals - even when I couldn't hear them. Music played such an important part of my life when I was younger. There was always music in the house. Dad would play his guitar all the time, and when we went camping he always brought it with. I have some of the most wonderful memories of the family, relatives, friends sitting around a campfire singing songs like "Do Lord," "My Grandfather's Clock," "Michael Row Your Boat Ashore," and "My Bonnie Lies Over the Ocean." and many more.
When I was 3 years old, we were camping in Bowser and the family who was camping next to us had a daughter who was 9 or 10. She had a tape recorder with some childrens songs on it, and she taught me a song called "The Antiseptic Baby". Its quite the tongue twister and I learned it quickly - and me and my Dad would be asked to sing it together during the campfire sing-a-long's. At my Paternal Grandfather's funeral, 2 years ago, everybody started bringing out the guitars and singing - it was one of Grandpa Guy's favorite things - and me and Dad sang that song together.It had been the first time in about 10 years that we'd done that.
THE Antiseptic Baby and the Prophylactic Pup
Were playing in the garden when a Bunny gamboled up;
They looked upon the creature with a loathing undisguised,
It wasn't disinfected and it wasn't sterilized.
So they took the pretty creature, and without an if-you-please,
They popped him in a boiler of a thousand-odd degrees;
They froze it in a freezer that was cold as banished hope
And washed it in permanganate with carbolated soap.
In sulphurated hydrogen they dipped its wiggly ears;
They trimmed its frizzy whiskers with a pair of hard-boiled shears;
They donned their rubber mittens and they took him by the hand
And welcomed him a member of the Fumigated Band.
There's not a Micrococcus in the garden where they play,
And they bathe in pure iodoform a dozen times a day;
They imbibe their daily rations from a hygienic cup—
The Bunny and the Baby and the Prophylactic Pup.
On the way to the Legion (I decided to walk- its only a mile away) it was just wonderful. I could hear dogs barking, birds chirping, I could tell way beforehand if a vehicle was coming up behind me on the street.
I find when I'm IN a vehicle its more difficult - the sound of the engine itself drowns out other sounds, but I'm sure as I learn to "listen over" some sounds, I'll be able to filter it out with time.
I heard the rain on the hood of the truck the other day. It was such a wonderful sound. I find myself stopping beside my Mom's fish tank a lot - she has a raised water filter that runs back into the tank, and the sound of the running water is just beautiful. I like to just stand there and listen to it. My hearing aids could never pick up that sound, water was just a blurry rushing noise, never something crisp and clear.
I'm realizing what a noisy place the world is. I probably knew that back when I could hear, but being a child, one doesn't really learn to appreciate what one hears. We had Evan over this afternoon while my brother worked on my car, and he'd laugh and giggle, and babble away and it was just music to be able to hear his voice. I'm so thankful for the chance that has been given to me to experience this again.
I'm finding that often voices are still a jumble of sounds....and then, out of the blue a word or 2 or 3 will come through clearly. When those words come through, sometimes I do a double-take. Did I REALLY hear that? I'm not just imagining it?
I've been going through my movie collection a bit at a time - just hearing everything from a new perspective. I watched Aladdin and Sister Act II and the singing is just beautiful. I had forgotten
Robin William's voice.
I want to rent some of my old favorite musicals - My Fair Lady, The Sound of Music, Chicago, A Chorus Line. I always LOVED the musicals - even when I couldn't hear them. Music played such an important part of my life when I was younger. There was always music in the house. Dad would play his guitar all the time, and when we went camping he always brought it with. I have some of the most wonderful memories of the family, relatives, friends sitting around a campfire singing songs like "Do Lord," "My Grandfather's Clock," "Michael Row Your Boat Ashore," and "My Bonnie Lies Over the Ocean." and many more.
When I was 3 years old, we were camping in Bowser and the family who was camping next to us had a daughter who was 9 or 10. She had a tape recorder with some childrens songs on it, and she taught me a song called "The Antiseptic Baby". Its quite the tongue twister and I learned it quickly - and me and my Dad would be asked to sing it together during the campfire sing-a-long's. At my Paternal Grandfather's funeral, 2 years ago, everybody started bringing out the guitars and singing - it was one of Grandpa Guy's favorite things - and me and Dad sang that song together.It had been the first time in about 10 years that we'd done that.
THE Antiseptic Baby and the Prophylactic Pup
Were playing in the garden when a Bunny gamboled up;
They looked upon the creature with a loathing undisguised,
It wasn't disinfected and it wasn't sterilized.
So they took the pretty creature, and without an if-you-please,
They popped him in a boiler of a thousand-odd degrees;
They froze it in a freezer that was cold as banished hope
And washed it in permanganate with carbolated soap.
In sulphurated hydrogen they dipped its wiggly ears;
They trimmed its frizzy whiskers with a pair of hard-boiled shears;
They donned their rubber mittens and they took him by the hand
And welcomed him a member of the Fumigated Band.
There's not a Micrococcus in the garden where they play,
And they bathe in pure iodoform a dozen times a day;
They imbibe their daily rations from a hygienic cup—
The Bunny and the Baby and the Prophylactic Pup.
Saturday, April 16, 2005
The perspective of others
This was written in the blog of a dear friend of mine - just after I posted my "There Is No Sunshine Today" letter on a bulletin board I participate in with her. I've known Brenda for 9 years now, and she's an amazing lady. (Her blog - Brenda Bradshaw is in my blog links on the right)
I keep going back to read her entry in her blog because it just is so eloquent. It makes me happy, and it brings a tear to my eyes each time I revisit it. I never dreamed I'd impact the lives of others with my experiences like she describes.
--------------------------------
WHAT HAPPENS
When Words Fail to come to a writer's fingertips?
There's a sense of panic, of course. I mean, this is what I DO, after all. It's not that the words aren't there. It's just that the words are suddenly, so incredibly...insignificant. I cannot do them justice. I cannot, for once, capture the moment, and it leaves me staring at a screen, attempting to convey these thoughts that are running amok in my head.
No, it's not the drugs talking this time. And no, I'm not exceedingly tired. And believe it or not, I'm not even rambling.
I have a dear, DEAR friend named Dyniece. I originally met her on mIRC several years ago. She was married to this incredible jerk. She deserved so much better. Although she was in Oklahoma at the time, I was in Maryland. She left the Jerk (YAY!) and moved back to Canada (Not a yay.) Dyniece is deaf.
She used to hear as a child, but then a high fever and a wicked disease stripped her of that sense that we all take for granted. For 25 years, she has lived in silence. I can't begin to imagine what it had to be like for her as a child. I have a 10 year old daughter, and I try to think of what would happen, how could Carly feel, if she got really sick and suddenly, she can see my mouth moving but there are no words making it to her ears. Turning on her radio and hearing nothing. Checking the television and being greeted by silence. I wonder how Carly would deal with it, but more worrisome...how would *I* deal with it as her mother. My heart would break a billion times over, I'm sure. So you learn to sign and you learn to read lips, but that never-ending silence. I can't wrap my brain around that idea. My life is chaos, screaming kids and loud tvs and CDs and radios and blaring music in the van. There is NEVER silence here. What is it to walk around with nothing, just...nothing...being heard?
Because Dy went deaf as a child, rather than being born deaf, she was one of the few adults eligible for a Cocklear Implant. Very few adults are eligible because it's like taking one of us and setting us down in the middle of China without a clue. Those born deaf don't know what a hard C sound is. They don't know a cough from a word. It's like totally relearning a language, and just like with a 2nd language, it's best learned young. Dy wore a hearing aid for years, and apparently it stimulated just enough to keep things active in there.
Two months ago, she had the surgery for the implant. Tuesday, she had the implant turned on. This morning, my husband woke me up as usual. (I am wicked bad to wake up.) He said: Brenda, Neecy (that's what I call her) posted.
Well, now I'm awake. We've been all waiting anxiously to see how it went. I wanted to be there SO MUCH to see her face. And of course, we all had that secret fear: What would we do, what would we say, if it didn't work at all?
He said: She has a post called "There is no sunshine today". And like that, I was out of bed, my heart broken as I raced to the computer, saying "Noooooo, no no no" over and over again. He said: "She hears everything."
And I stopped and I stared and I cried. And I read her post and I'm crying still.
Neecy heard. She heard her mother gasp. In just a few days, she's hearing more than most hear after five years of getting the implant. Can you imagine? I can't. I simply...can't. They tested and tested. She can hear words clearly. She can hear the radio, the words over a telephone. (Those are the hardest for implant patients because the frequencies are different.) She went outside and heard birds. Those gawdawful things that annoy the piss out of me every morning right outside my window while I'm sleeping. She found the joy in that. I think, "What if I couldn't hear those birds?" Well, of course, I can't even comprehend the idea because I've always heard. She found the beauty of it where I had lost it. She picked up a bag of chips and giggled at the crinkling sound of the package.
Can you IMAGINE?! A bag of chips. An insignificant bag of CHIPS made my dear friend's face light up. I have to record Cooper (my 3 yr old) during a case of those deep baby giggles. I want her to hear that. It's my personal favorite sound in all the world, and I want her to know what it's like.
I want her to own a CD and build a collection. I want her to know what songs sound like again. She was in the doctor's office and they played "I'll Fly Away" and "Amazing Grace" and she said she cried like a baby. The last time I heard "I'll Fly Away" was at my grandmother's funeral. And here are the tears again, but the sorrow has been replaced with a joy that has no edges, a joy so all encompassing for my friend that I cannot honor her experience with my talent. I cannot get ahold of this idea strongly enough to make this post worthy of what it is.
It's a tribute to Dyniece. Neecy...no longer defined as one of the deaf. Neecy who can hear. Neecy who gets giggles over a bag of chips and Neecy who reminded me that there is joy in the chirps of the birds. That traffic and honking and shouting are a JOY and should be cherished.
She says she has a hard time with accents. Guess what? I don't care. This Texas voice is going to call her, and I'm going to be crying and telling her how much I love her, Texas accent not withstanding. She can hear, CAN HEAR, how I say nekkid instead of naked. She can hear my kids hollaring in the background. She can hear me say "Thank you, Neecy, for sharing this incredible moment in your life with me." For once she won't have to read my words, she will hear them. And I pray I do not fail at that moment. I hope I can convey to her what I'm feeling, and not just blubber like a baby in her ear. But I know her well, and I know that if I do end up snottin' and sobbin' at her, she will laugh, simply happy to hear me cry.
I keep going back to read her entry in her blog because it just is so eloquent. It makes me happy, and it brings a tear to my eyes each time I revisit it. I never dreamed I'd impact the lives of others with my experiences like she describes.
--------------------------------
WHAT HAPPENS
When Words Fail to come to a writer's fingertips?
There's a sense of panic, of course. I mean, this is what I DO, after all. It's not that the words aren't there. It's just that the words are suddenly, so incredibly...insignificant. I cannot do them justice. I cannot, for once, capture the moment, and it leaves me staring at a screen, attempting to convey these thoughts that are running amok in my head.
No, it's not the drugs talking this time. And no, I'm not exceedingly tired. And believe it or not, I'm not even rambling.
I have a dear, DEAR friend named Dyniece. I originally met her on mIRC several years ago. She was married to this incredible jerk. She deserved so much better. Although she was in Oklahoma at the time, I was in Maryland. She left the Jerk (YAY!) and moved back to Canada (Not a yay.) Dyniece is deaf.
She used to hear as a child, but then a high fever and a wicked disease stripped her of that sense that we all take for granted. For 25 years, she has lived in silence. I can't begin to imagine what it had to be like for her as a child. I have a 10 year old daughter, and I try to think of what would happen, how could Carly feel, if she got really sick and suddenly, she can see my mouth moving but there are no words making it to her ears. Turning on her radio and hearing nothing. Checking the television and being greeted by silence. I wonder how Carly would deal with it, but more worrisome...how would *I* deal with it as her mother. My heart would break a billion times over, I'm sure. So you learn to sign and you learn to read lips, but that never-ending silence. I can't wrap my brain around that idea. My life is chaos, screaming kids and loud tvs and CDs and radios and blaring music in the van. There is NEVER silence here. What is it to walk around with nothing, just...nothing...being heard?
Because Dy went deaf as a child, rather than being born deaf, she was one of the few adults eligible for a Cocklear Implant. Very few adults are eligible because it's like taking one of us and setting us down in the middle of China without a clue. Those born deaf don't know what a hard C sound is. They don't know a cough from a word. It's like totally relearning a language, and just like with a 2nd language, it's best learned young. Dy wore a hearing aid for years, and apparently it stimulated just enough to keep things active in there.
Two months ago, she had the surgery for the implant. Tuesday, she had the implant turned on. This morning, my husband woke me up as usual. (I am wicked bad to wake up.) He said: Brenda, Neecy (that's what I call her) posted.
Well, now I'm awake. We've been all waiting anxiously to see how it went. I wanted to be there SO MUCH to see her face. And of course, we all had that secret fear: What would we do, what would we say, if it didn't work at all?
He said: She has a post called "There is no sunshine today". And like that, I was out of bed, my heart broken as I raced to the computer, saying "Noooooo, no no no" over and over again. He said: "She hears everything."
And I stopped and I stared and I cried. And I read her post and I'm crying still.
Neecy heard. She heard her mother gasp. In just a few days, she's hearing more than most hear after five years of getting the implant. Can you imagine? I can't. I simply...can't. They tested and tested. She can hear words clearly. She can hear the radio, the words over a telephone. (Those are the hardest for implant patients because the frequencies are different.) She went outside and heard birds. Those gawdawful things that annoy the piss out of me every morning right outside my window while I'm sleeping. She found the joy in that. I think, "What if I couldn't hear those birds?" Well, of course, I can't even comprehend the idea because I've always heard. She found the beauty of it where I had lost it. She picked up a bag of chips and giggled at the crinkling sound of the package.
Can you IMAGINE?! A bag of chips. An insignificant bag of CHIPS made my dear friend's face light up. I have to record Cooper (my 3 yr old) during a case of those deep baby giggles. I want her to hear that. It's my personal favorite sound in all the world, and I want her to know what it's like.
I want her to own a CD and build a collection. I want her to know what songs sound like again. She was in the doctor's office and they played "I'll Fly Away" and "Amazing Grace" and she said she cried like a baby. The last time I heard "I'll Fly Away" was at my grandmother's funeral. And here are the tears again, but the sorrow has been replaced with a joy that has no edges, a joy so all encompassing for my friend that I cannot honor her experience with my talent. I cannot get ahold of this idea strongly enough to make this post worthy of what it is.
It's a tribute to Dyniece. Neecy...no longer defined as one of the deaf. Neecy who can hear. Neecy who gets giggles over a bag of chips and Neecy who reminded me that there is joy in the chirps of the birds. That traffic and honking and shouting are a JOY and should be cherished.
She says she has a hard time with accents. Guess what? I don't care. This Texas voice is going to call her, and I'm going to be crying and telling her how much I love her, Texas accent not withstanding. She can hear, CAN HEAR, how I say nekkid instead of naked. She can hear my kids hollaring in the background. She can hear me say "Thank you, Neecy, for sharing this incredible moment in your life with me." For once she won't have to read my words, she will hear them. And I pray I do not fail at that moment. I hope I can convey to her what I'm feeling, and not just blubber like a baby in her ear. But I know her well, and I know that if I do end up snottin' and sobbin' at her, she will laugh, simply happy to hear me cry.
Friday, April 15, 2005
There is no sunshine today
I wrote this out last night, but forgot to post it here (just posted it to a message board for CI users then went to sleep)
I thought I'd add a copy here.
I'll extend on it later with more personal viewpoints but this is the gist of it :)
Love you all
~Dy
------------------------------
Subject line will be explained as you read :)
LONG ASSED POST ALERT! You've been warned!
Soooooooooo We got home this evening, a full day earlier than expected. (By the way this is the first time typing on my keyboard while wearing my CI and its a loud-assed kb!)
anyway
So we get there at 9am Tuesday morning, and Dr Pijl is waiting for us. First he explains the functions of the CI itself (how to turn it on/off how to insert the batteries, how to switch between the different programs - it can hold 4 - and stuff like that)
Then he puts it on me, hooked up to his computer - no sound yet as its not running a program yet...he loads Program 1 and says he's going to give me a tone....tell him if I can hear it
I almost fall outta my f*ckin chair!! (pardon the language)
I mean...it was like 'HOLY **** WHAT WAS THAT Huh??"
(Hey Mikey - she likes it!)
He looked at me and grinned - Mom's white faced. She said the look of shock on my face was unbelievable (she got a pic and I'll scan it when she gets the film developed). We go through all the electrodes (22) and then he turns the full program on.
the only word was WOW...... unbelievable. He started talking to me, and let me tell you, Dr Pijl is VERY VERY difficult to lipread - at best I usualy understood 30% of what he was saying - the rest is just pieced together from experience with regards to word placement and sentence structure.
But not now - I was UNDERSTANDING EVERY SINGLE WORD!!!
every dang word
I still had to lipread but the sound of his voice came through so *clearly* that understanding him was easy.
The rest of the morning was kind of a blur, we went through the first program again, with him asking me about loudness and comfort. Taking a break for 5 min to walk down the hallway (I could hear people talking - though not exactly understand them, I could hear their vocal tones - ... down the hallway - before approaching the secretary's office I could hear her typing...thru the
door, more people talking.... shoes clicking on the floor...a door opening and closing.... a wheelchair going over the tiles.... we went outside.... WOW... vehicles passing, a seagull screaming on the roof.... overwhelming!.
Back inside he adds the second program (I use 3 programs, which are the original System 3 program, a High-Res program, and the brand new one thats specific to the trials for the Nucleus System 4
unit only. I DO NOT know which is which, just programs 1 2 and 3 so that I can give a preference free from any influence) The second program sounds a bit different...sounds are more muted, more resonant. We notice that I started to get an eye-twitch with the second program so we ran thru each of the 22 electrodes and discovered that there were 5 that were causing the problem.
Dr Pijl thinks that the bones surrounding my cochlea may not be completely solid, and may be allowing a bit of the electrical pulses to bleed over to the facial nerve, which has happened to people in the past. So he turns off those 5 electrodes, they can be re-added later in the program when they find a way to work around the problem, but for now I have 17 working electrodes.
Its hard to put everything together....but I was hearing things I'd never heard (or remembered hearing) before. Sounds were clear. Crisp. Individual. Voices were resonant, pleasant sounding.
We broke for lunch - Mom and I went to the news stand and she wanted a bag of chips and when she picked them up I was like 'WOW!! That sounds neat!" because I could hear the crinkling of the celophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.
Then he put me through some tests - where he would play different beeps and I'd have to count them and tell him how many I heard. Wasn't very difficult - he told me that most of people can NOT differentiate between the tones on the first day. I was getting almost every one right.
We began to suspect that perhaps the fact that I wore hearing aids for 23 years kept my auditory nerve stimulated to the point that it was kept in a state of readyness and once the CI activated it was just a matter of understanding and for some reason I was getting clarity and distinguishing the different tones without a problem. Dr Pijl was pretty amazed.
We did that for both programs and that took most of the day, plus trying to work around the 5 problem electrodes and see if there was a way to re-add them back without causing the eye tick but we couldn't because at a level where the eye stopped twitching, the sounds were too soft for me to really understand. We kept increasing the sound for both programs as after about an hour,
a level which initially would be almost TOO intense would seem too soft, as I learned to adjust to the stimulation. Dr Pijl got a kick out of how I kept asking him if we could turn them up more *grin*
So at around 3pm we called it a day, and went back to the hotel. I had a nap, then Mom and I watched some TV - and I found out that during some commercials that weren't closed captioned, I was understanding what the actors were saying!
Mom and I just spent the evening going over what had happened and talking and playing cards. I loved how they sounded when shuffled.
Wednesday morning we worked on the third program for most of the morning then equalizing all the elctrodes and optimizing the programs, more counting, telling which of 5 tones were softer or louder, making it all balanced out, more breaks to listen to this and that outside, etc
Then after lunch, we meet with Cindy, the audiologist. She's a sweetheart - she's the one who did all my preliminary testing in November and December prior to my being approved for my CI.
So... she says we are going to try some tests...word recognition etc just to see if the CI is picking things up correctly.
She gives me a list with words on it....three words to a line. She wants me to pick out which word she is saying without lipreading or looking at her face...so we start... I get one right...then another...then another... 3/4 of the way down the page, she takes the paper out of my hand "well THAT'S too easy for you!"
So we move onto a different test...she wants me to follow along while she reads a sentence and pick out 1 of 2 different words for example "Joe went to see/saw a cat" (ignore proper english)She'd say one of the 2 words and I'd have to tell if she said see or saw
3/4 of the way down THAT list..."too easy"...
So she hands me another paper with groups of 4 sentences.
Now she is going to read a sentence and I have to pick out what it was out of the 4 listed in each group on the page.
So she says the first and I'm reading the paper...easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".
She gets ready to say the 2nd sentence...and on a whim, I just turn my head to the left and DON'T look at the paper...I closed my eyes...and she said the sentence. Without opening my eyes I repeated what I thought I heard.
Then looked at the paper...and I was right.
"There is no sunshine today"
That was the first full sentence I understood in 24 years.
24 years - and I understood it completely.
And we all cried. Oh man.... thats when it really hit home.
So we went through the rest of the list...without me reading it...and I got them all right.
Then she went on to "categorical sentences" like what you'd hear in the morning
"how are you today?"
"Would you like eggs for breakfast?"
"lets have a cup of coffee"
"good morning"
"did you sleep well?"
And I got all but the "lets" in "lets have a cup of coffee"
mindblowing doesn't BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was crying...it was just so dang emotional.
Then she starts explaining how I'll continue to increase my ability to understand language, how with some people it will probably be very easy to understand, for others I may always have to lipread them a little. (lisps, accets etc play a part too) She then asked me if I wanted to try listening on the phone to her answering machine message and see if I could understand it...so
she calls her office....and I get out "Helo, You have reached Cindy's answering service"....then some more words, it was a bit garbled after that..... then "If you would like to leave a message I'll get back to you as soon as possible. Thanks for calling".
Again.. more astonishment. She went back to her office and had me call her...and we had a converstation on the phone!!!!
Now mind you - she's a audiologist. She knows how to enunciate properly to make it easier for hard of hearing people to understand her, and while I could not understand every word, I was able to understand most. She recited days of the week on the phone and asked me to repeat them and I got all correct except Tuesday and Thursday - the two T words were difficult to separate.
Cindy said there are people who have had their CI'S for 6 months who couldn't do what I did on the 2nd day. Mindblowing huh? That was the end of day 2 - what a way to end it on a high note!!!!
Dr Pijl had said he thought that we'd probably be able to leave thursday afternoon because I was just breezing through all the tests without a problem.
Thursday morning I talk to the surgeon who did the implant itself, Dr Westerberg. He's even harder to lipread than Dr Pijl as he mumbles - but I understood *EVERY SINGLE WORD HE SAID!*
That morning we fine- tuned the programs some more, did some computer analyzing to test the functioning of each electrode and chart it etc - the testing is lengthy because I have to listen for different tones, compare them, listen to cadences etc...its kind of boring lol but serves a purpose.
I'd already told Dr Pijl that I was favoring program #1 and he seems happy with that. The sound with this program is simply clearer, crisper, more realistic, and voices are easier to understand.
We started doign some tests that normally are'nt done until the follow ups, but because I was already understanding full sentences spoken by Cindy and stuff like that, he said we might as well go ahead with some of the stuff - just more testing regaring the different programs and how they compared to each other.
And then it was time to go home. I go back in 3 weeks, and then every 2 weeks thereafter for 1/2 a day and once a month for a full day. Next time I go back I will pick which of the 3 programs I like best (I already know it will be #1) then what they will do is then add 4 programs that are variations
of #1 to use in different settings (where sounds are super soft and I want more clarity, in a public setting where I want to eliminate backrgound noise more, 1 on 1 conversations etc)
We got home at 7pm tonight and its just been the most amazing experience of my life, and it didn't stop there!
i was told by Dr Pijl that when it came to music, music appreciation was NOT a universal appreciation among CI recipents. He said some learn to understand it over time, some never do, some simply don't like the sound at all as the programs are more geared towards understanding SPEECH than understanding music and/or singing.
But the stubborn mule in me doesn't listen very well.
So we get home and the first thing I ask my Dad to do, is put in a CD soundtrack from the movie "Oh Brother, Where Art Thou?" and play "I'll Fly Away" just to see if I could understand it. So he turns it on....and there the words are...clear...and I begin singing along with the song.
Mom and Dad started crying.
So...its been an *amazingly* successful switch-on to say the least. And they tell me it will just continue to get better and better. They say that even after 5 years, some CI recipents are STILL learning and finding new things and understanding what they hear better, so I have room for a LOT more....and I can't wait!!!!
This might have jumped around a bit - if you have any questions just ask and I'll elaborate. I'm sure I missed some points and I'll remember them in the morning, its just that my mind is still a jumble of all these experiences. I tried to put it down as closely as I remembered...
Its sure nice to hear again
I thought I'd add a copy here.
I'll extend on it later with more personal viewpoints but this is the gist of it :)
Love you all
~Dy
------------------------------
Subject line will be explained as you read :)
LONG ASSED POST ALERT! You've been warned!
Soooooooooo We got home this evening, a full day earlier than expected. (By the way this is the first time typing on my keyboard while wearing my CI and its a loud-assed kb!)
anyway
So we get there at 9am Tuesday morning, and Dr Pijl is waiting for us. First he explains the functions of the CI itself (how to turn it on/off how to insert the batteries, how to switch between the different programs - it can hold 4 - and stuff like that)
Then he puts it on me, hooked up to his computer - no sound yet as its not running a program yet...he loads Program 1 and says he's going to give me a tone....tell him if I can hear it
I almost fall outta my f*ckin chair!! (pardon the language)
I mean...it was like 'HOLY **** WHAT WAS THAT Huh??"
(Hey Mikey - she likes it!)
He looked at me and grinned - Mom's white faced. She said the look of shock on my face was unbelievable (she got a pic and I'll scan it when she gets the film developed). We go through all the electrodes (22) and then he turns the full program on.
the only word was WOW...... unbelievable. He started talking to me, and let me tell you, Dr Pijl is VERY VERY difficult to lipread - at best I usualy understood 30% of what he was saying - the rest is just pieced together from experience with regards to word placement and sentence structure.
But not now - I was UNDERSTANDING EVERY SINGLE WORD!!!
every dang word
I still had to lipread but the sound of his voice came through so *clearly* that understanding him was easy.
The rest of the morning was kind of a blur, we went through the first program again, with him asking me about loudness and comfort. Taking a break for 5 min to walk down the hallway (I could hear people talking - though not exactly understand them, I could hear their vocal tones - ... down the hallway - before approaching the secretary's office I could hear her typing...thru the
door, more people talking.... shoes clicking on the floor...a door opening and closing.... a wheelchair going over the tiles.... we went outside.... WOW... vehicles passing, a seagull screaming on the roof.... overwhelming!.
Back inside he adds the second program (I use 3 programs, which are the original System 3 program, a High-Res program, and the brand new one thats specific to the trials for the Nucleus System 4
unit only. I DO NOT know which is which, just programs 1 2 and 3 so that I can give a preference free from any influence) The second program sounds a bit different...sounds are more muted, more resonant. We notice that I started to get an eye-twitch with the second program so we ran thru each of the 22 electrodes and discovered that there were 5 that were causing the problem.
Dr Pijl thinks that the bones surrounding my cochlea may not be completely solid, and may be allowing a bit of the electrical pulses to bleed over to the facial nerve, which has happened to people in the past. So he turns off those 5 electrodes, they can be re-added later in the program when they find a way to work around the problem, but for now I have 17 working electrodes.
Its hard to put everything together....but I was hearing things I'd never heard (or remembered hearing) before. Sounds were clear. Crisp. Individual. Voices were resonant, pleasant sounding.
We broke for lunch - Mom and I went to the news stand and she wanted a bag of chips and when she picked them up I was like 'WOW!! That sounds neat!" because I could hear the crinkling of the celophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.
Then he put me through some tests - where he would play different beeps and I'd have to count them and tell him how many I heard. Wasn't very difficult - he told me that most of people can NOT differentiate between the tones on the first day. I was getting almost every one right.
We began to suspect that perhaps the fact that I wore hearing aids for 23 years kept my auditory nerve stimulated to the point that it was kept in a state of readyness and once the CI activated it was just a matter of understanding and for some reason I was getting clarity and distinguishing the different tones without a problem. Dr Pijl was pretty amazed.
We did that for both programs and that took most of the day, plus trying to work around the 5 problem electrodes and see if there was a way to re-add them back without causing the eye tick but we couldn't because at a level where the eye stopped twitching, the sounds were too soft for me to really understand. We kept increasing the sound for both programs as after about an hour,
a level which initially would be almost TOO intense would seem too soft, as I learned to adjust to the stimulation. Dr Pijl got a kick out of how I kept asking him if we could turn them up more *grin*
So at around 3pm we called it a day, and went back to the hotel. I had a nap, then Mom and I watched some TV - and I found out that during some commercials that weren't closed captioned, I was understanding what the actors were saying!
Mom and I just spent the evening going over what had happened and talking and playing cards. I loved how they sounded when shuffled.
Wednesday morning we worked on the third program for most of the morning then equalizing all the elctrodes and optimizing the programs, more counting, telling which of 5 tones were softer or louder, making it all balanced out, more breaks to listen to this and that outside, etc
Then after lunch, we meet with Cindy, the audiologist. She's a sweetheart - she's the one who did all my preliminary testing in November and December prior to my being approved for my CI.
So... she says we are going to try some tests...word recognition etc just to see if the CI is picking things up correctly.
She gives me a list with words on it....three words to a line. She wants me to pick out which word she is saying without lipreading or looking at her face...so we start... I get one right...then another...then another... 3/4 of the way down the page, she takes the paper out of my hand "well THAT'S too easy for you!"
So we move onto a different test...she wants me to follow along while she reads a sentence and pick out 1 of 2 different words for example "Joe went to see/saw a cat" (ignore proper english)She'd say one of the 2 words and I'd have to tell if she said see or saw
3/4 of the way down THAT list..."too easy"...
So she hands me another paper with groups of 4 sentences.
Now she is going to read a sentence and I have to pick out what it was out of the 4 listed in each group on the page.
So she says the first and I'm reading the paper...easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".
She gets ready to say the 2nd sentence...and on a whim, I just turn my head to the left and DON'T look at the paper...I closed my eyes...and she said the sentence. Without opening my eyes I repeated what I thought I heard.
Then looked at the paper...and I was right.
"There is no sunshine today"
That was the first full sentence I understood in 24 years.
24 years - and I understood it completely.
And we all cried. Oh man.... thats when it really hit home.
So we went through the rest of the list...without me reading it...and I got them all right.
Then she went on to "categorical sentences" like what you'd hear in the morning
"how are you today?"
"Would you like eggs for breakfast?"
"lets have a cup of coffee"
"good morning"
"did you sleep well?"
And I got all but the "lets" in "lets have a cup of coffee"
mindblowing doesn't BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was crying...it was just so dang emotional.
Then she starts explaining how I'll continue to increase my ability to understand language, how with some people it will probably be very easy to understand, for others I may always have to lipread them a little. (lisps, accets etc play a part too) She then asked me if I wanted to try listening on the phone to her answering machine message and see if I could understand it...so
she calls her office....and I get out "Helo, You have reached Cindy's answering service"....then some more words, it was a bit garbled after that..... then "If you would like to leave a message I'll get back to you as soon as possible. Thanks for calling".
Again.. more astonishment. She went back to her office and had me call her...and we had a converstation on the phone!!!!
Now mind you - she's a audiologist. She knows how to enunciate properly to make it easier for hard of hearing people to understand her, and while I could not understand every word, I was able to understand most. She recited days of the week on the phone and asked me to repeat them and I got all correct except Tuesday and Thursday - the two T words were difficult to separate.
Cindy said there are people who have had their CI'S for 6 months who couldn't do what I did on the 2nd day. Mindblowing huh? That was the end of day 2 - what a way to end it on a high note!!!!
Dr Pijl had said he thought that we'd probably be able to leave thursday afternoon because I was just breezing through all the tests without a problem.
Thursday morning I talk to the surgeon who did the implant itself, Dr Westerberg. He's even harder to lipread than Dr Pijl as he mumbles - but I understood *EVERY SINGLE WORD HE SAID!*
That morning we fine- tuned the programs some more, did some computer analyzing to test the functioning of each electrode and chart it etc - the testing is lengthy because I have to listen for different tones, compare them, listen to cadences etc...its kind of boring lol but serves a purpose.
I'd already told Dr Pijl that I was favoring program #1 and he seems happy with that. The sound with this program is simply clearer, crisper, more realistic, and voices are easier to understand.
We started doign some tests that normally are'nt done until the follow ups, but because I was already understanding full sentences spoken by Cindy and stuff like that, he said we might as well go ahead with some of the stuff - just more testing regaring the different programs and how they compared to each other.
And then it was time to go home. I go back in 3 weeks, and then every 2 weeks thereafter for 1/2 a day and once a month for a full day. Next time I go back I will pick which of the 3 programs I like best (I already know it will be #1) then what they will do is then add 4 programs that are variations
of #1 to use in different settings (where sounds are super soft and I want more clarity, in a public setting where I want to eliminate backrgound noise more, 1 on 1 conversations etc)
We got home at 7pm tonight and its just been the most amazing experience of my life, and it didn't stop there!
i was told by Dr Pijl that when it came to music, music appreciation was NOT a universal appreciation among CI recipents. He said some learn to understand it over time, some never do, some simply don't like the sound at all as the programs are more geared towards understanding SPEECH than understanding music and/or singing.
But the stubborn mule in me doesn't listen very well.
So we get home and the first thing I ask my Dad to do, is put in a CD soundtrack from the movie "Oh Brother, Where Art Thou?" and play "I'll Fly Away" just to see if I could understand it. So he turns it on....and there the words are...clear...and I begin singing along with the song.
Mom and Dad started crying.
So...its been an *amazingly* successful switch-on to say the least. And they tell me it will just continue to get better and better. They say that even after 5 years, some CI recipents are STILL learning and finding new things and understanding what they hear better, so I have room for a LOT more....and I can't wait!!!!
This might have jumped around a bit - if you have any questions just ask and I'll elaborate. I'm sure I missed some points and I'll remember them in the morning, its just that my mind is still a jumble of all these experiences. I tried to put it down as closely as I remembered...
Its sure nice to hear again
Sunday, April 10, 2005
And so it begins
"We are Borg. Resistance is futile. Your life, as you have known it is over."
---------------------------
This is gonna be a long-assed post, so you might want to make sure you have a cuppa handy and maybe a few nibbles *grin*
First things first - for those who don't know me, I'm a 33 year old deaf Canadian woman. I have postlingual sensorineural deafness stemming from a bout of meningococcal meningitis when I was 9 years old. In laymans terms, this means that the sensory nerves in the cochlea are killed or damaged (in my case from fever.) When these cells die, contact with the hearing nerve fibers is broken and the perception of sound is lost. Since the sensory hair cells of the auditory system are not naturally replaced or repaired, the damage is permanent.
Its been 24 years since I went deaf. I have no real recollection of what happened. One moment I was happily sitting in a chair reading my favorite book (a collection of fairy tales) the next I woke up 3 weeks later from a coma, totally deaf.
Saying this was a bit of a shock is like saying the ocean is a bit wet....
But I adapted...I learned to lipread...learned sign language, went to school, graduated, even went to college for a while
But during all this my fondest wish was to hear again.
Back in the early 1980's, I visited St Paul's Hospital to investigate receiving a Cochlear Implant but at the time it just wasn't a possibility.
Then January 2004, I again started exploring the possibility of being implanted. I knew that technology had improved by leaps and bounds in almost 25 years, and I'd never stopped wishing that I could hear (even to the most remote degree) again. November, 2004 I was contacted by St Paul's again to undergo initial testing. Everything seemed peachy - then in December, Dr Pijl (head of the CI program at St Paul's) contacted me to see if I'd be willing to participate in the clinical trials for the new Cochlear Nucleus System 4. BOY HOWDY, was I ever!!!
So more testing followed plus a MRI which showed my cochlea was healthy and not occified, or turned to bone (a possible side effect that happens in some people).
My implantation was scheduled for January 24th. I'll follow this with an email I sent out to friends and family:
--------------------------------------
The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 mins and then everything was awesome - in fact I was doing so well they let me go back to the hotel after my 2 hours of observation post surgery!!! It was just fantastic to be able to spend the night with my Mom at the hotel instead of in the hospital
We came home last night, and other than some aches and pains (general anesthesia always leaves my body feeling like itts been
ran thru a washer wringer twice then ran over by a dump truck for a good measure) I’m doing great. I’m hardly in ANY pain where the surgery was!! In fact since monday I’ve only taken two Tylenol #3’s, its actually not been that bad at ALL!!! I’ve been having a few dizzy spells but my surgeon said to expect those for a week or 2.
Now I’m just taking things day by day while I heal. I go see my ear/nose/throat dr next week to get the stitches removed, then in 4-6 weeks I go back to vancouver for a week and do the switch on. Gotta win the lottery between now and then LOL as I’ll have to stay in a hotel for a week while that happens but it’ll all work out one way or another. I’m soooooooooooo psyched!!
regardless I will be sending regular updates on how it all comes together!
I'm really lucky how well it all was - my mom got to talking with a family whose daughter had her implant done right after mine, and we ran into them the next day at the hotel restaurant and they told me she hadn't been doing very well - reacted violently to the anesthesia and had spent the whole night vomiting and all that. Poor girl.
-----------------------------------------
An update from February 9th:
Time for a post surgery update.
Everything's been going very well. I've pretty much just been taking it easy and letting things do day to day. I experienced some bad dizzy spells for the first few days following the surgery but other than that everything was fine.
Last Tuesday I had my first post-surgery checkup with my ear/nose/throat Dr and he said that everything looked peachy keen. I was healing nicely and there was no sign of a problem or infection.
But..
On Saturday afternoon I noticed a grape-sized lump in my neck, about 6 inches down from my incision. I went to the drop-in clinic on Sunday and the Dr who checked me out suspected an inflamed lymph node. My mom had called Dr Pijl at St Paul's Hospital on Saturday to let him know - he had requested that we keep him apraised about *ANY* side effects. Apparently there have been more than a few people who have been having some pretty bad side effects such as vomiting and continued dizzyness, and horrendous tinnitus.
Dr Pijl called Monday morning at 8am and asked if we would please come over to Vancouver (I'm on Vancouver Island) that day. So my mom and I hopped on the fast cat and went over to St Paul's hospital. I was quickly escorted in to see the specialist who had been waiting for me, and was given an examination, which included the joyous experience of having an endoscope shoved up my nose and down my throat (sarcasm evident). She told me that there was no swelling, no sign of infection or anything and she also suspected that it was a lymph node problem. As this is the first time they have ever encountered this kind of side effect (or so Dr Pijl told us), it had to be documented, especially considering I'm part of the clinical trials.
So I just have to keep an eye on it- if it starts hurting and/or gets bigger they'll proably do a biopsy and see if they can find out if its anything serious, but they're hoping it goes away on its own.
---------------------------
(which it has)
And NOW... my activation date is this coming Tuesday (April 12th - 15th). I keep getting asked if I'm getting nervous or excited.... a little bit of both actually, but I'm trying NOT to let myself get into a nervous wreck. Its easier to go in with NO expectations than to go in with them and not have them met. With every implantee its new - they can't predict exactly what I will hear, how MUCH I will hear - its all variable depending on how well I adapt to the stimulations.
I know that for the first while all I will hear will be pings and poppings... and that slowly they
will take on different sounds and frequencies as I learn to understand what the stimulation
to my auditory nerve means. A lot of people seem to think that it will be like flipping a light switch and *bam* I hear 100% again. I WISH! I aint no Jamie Summers (Remember her? The Bionic Woman had bionic hearing.)
Oh no it will be a long process which will require me to study sound, listen to people talking, and trying different speech processing programs with my implant to find out which one works for me the best, which settings are the best etc.
So thats the first post...I will be in Vancouver Tuesday to Friday and will make another longish post next weekend regarding what the activation process was like.
And so it begins.....
Assimiliation in t-minus 2 days and counting.
---------------------------
This is gonna be a long-assed post, so you might want to make sure you have a cuppa handy and maybe a few nibbles *grin*
First things first - for those who don't know me, I'm a 33 year old deaf Canadian woman. I have postlingual sensorineural deafness stemming from a bout of meningococcal meningitis when I was 9 years old. In laymans terms, this means that the sensory nerves in the cochlea are killed or damaged (in my case from fever.) When these cells die, contact with the hearing nerve fibers is broken and the perception of sound is lost. Since the sensory hair cells of the auditory system are not naturally replaced or repaired, the damage is permanent.
Its been 24 years since I went deaf. I have no real recollection of what happened. One moment I was happily sitting in a chair reading my favorite book (a collection of fairy tales) the next I woke up 3 weeks later from a coma, totally deaf.
Saying this was a bit of a shock is like saying the ocean is a bit wet....
But I adapted...I learned to lipread...learned sign language, went to school, graduated, even went to college for a while
But during all this my fondest wish was to hear again.
Back in the early 1980's, I visited St Paul's Hospital to investigate receiving a Cochlear Implant but at the time it just wasn't a possibility.
Then January 2004, I again started exploring the possibility of being implanted. I knew that technology had improved by leaps and bounds in almost 25 years, and I'd never stopped wishing that I could hear (even to the most remote degree) again. November, 2004 I was contacted by St Paul's again to undergo initial testing. Everything seemed peachy - then in December, Dr Pijl (head of the CI program at St Paul's) contacted me to see if I'd be willing to participate in the clinical trials for the new Cochlear Nucleus System 4. BOY HOWDY, was I ever!!!
So more testing followed plus a MRI which showed my cochlea was healthy and not occified, or turned to bone (a possible side effect that happens in some people).
My implantation was scheduled for January 24th. I'll follow this with an email I sent out to friends and family:
--------------------------------------
The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 mins and then everything was awesome - in fact I was doing so well they let me go back to the hotel after my 2 hours of observation post surgery!!! It was just fantastic to be able to spend the night with my Mom at the hotel instead of in the hospital
We came home last night, and other than some aches and pains (general anesthesia always leaves my body feeling like itts been
ran thru a washer wringer twice then ran over by a dump truck for a good measure) I’m doing great. I’m hardly in ANY pain where the surgery was!! In fact since monday I’ve only taken two Tylenol #3’s, its actually not been that bad at ALL!!! I’ve been having a few dizzy spells but my surgeon said to expect those for a week or 2.
Now I’m just taking things day by day while I heal. I go see my ear/nose/throat dr next week to get the stitches removed, then in 4-6 weeks I go back to vancouver for a week and do the switch on. Gotta win the lottery between now and then LOL as I’ll have to stay in a hotel for a week while that happens but it’ll all work out one way or another. I’m soooooooooooo psyched!!
regardless I will be sending regular updates on how it all comes together!
I'm really lucky how well it all was - my mom got to talking with a family whose daughter had her implant done right after mine, and we ran into them the next day at the hotel restaurant and they told me she hadn't been doing very well - reacted violently to the anesthesia and had spent the whole night vomiting and all that. Poor girl.
-----------------------------------------
An update from February 9th:
Time for a post surgery update.
Everything's been going very well. I've pretty much just been taking it easy and letting things do day to day. I experienced some bad dizzy spells for the first few days following the surgery but other than that everything was fine.
Last Tuesday I had my first post-surgery checkup with my ear/nose/throat Dr and he said that everything looked peachy keen. I was healing nicely and there was no sign of a problem or infection.
But..
On Saturday afternoon I noticed a grape-sized lump in my neck, about 6 inches down from my incision. I went to the drop-in clinic on Sunday and the Dr who checked me out suspected an inflamed lymph node. My mom had called Dr Pijl at St Paul's Hospital on Saturday to let him know - he had requested that we keep him apraised about *ANY* side effects. Apparently there have been more than a few people who have been having some pretty bad side effects such as vomiting and continued dizzyness, and horrendous tinnitus.
Dr Pijl called Monday morning at 8am and asked if we would please come over to Vancouver (I'm on Vancouver Island) that day. So my mom and I hopped on the fast cat and went over to St Paul's hospital. I was quickly escorted in to see the specialist who had been waiting for me, and was given an examination, which included the joyous experience of having an endoscope shoved up my nose and down my throat (sarcasm evident). She told me that there was no swelling, no sign of infection or anything and she also suspected that it was a lymph node problem. As this is the first time they have ever encountered this kind of side effect (or so Dr Pijl told us), it had to be documented, especially considering I'm part of the clinical trials.
So I just have to keep an eye on it- if it starts hurting and/or gets bigger they'll proably do a biopsy and see if they can find out if its anything serious, but they're hoping it goes away on its own.
---------------------------
(which it has)
And NOW... my activation date is this coming Tuesday (April 12th - 15th). I keep getting asked if I'm getting nervous or excited.... a little bit of both actually, but I'm trying NOT to let myself get into a nervous wreck. Its easier to go in with NO expectations than to go in with them and not have them met. With every implantee its new - they can't predict exactly what I will hear, how MUCH I will hear - its all variable depending on how well I adapt to the stimulations.
I know that for the first while all I will hear will be pings and poppings... and that slowly they
will take on different sounds and frequencies as I learn to understand what the stimulation
to my auditory nerve means. A lot of people seem to think that it will be like flipping a light switch and *bam* I hear 100% again. I WISH! I aint no Jamie Summers (Remember her? The Bionic Woman had bionic hearing.)
Oh no it will be a long process which will require me to study sound, listen to people talking, and trying different speech processing programs with my implant to find out which one works for me the best, which settings are the best etc.
So thats the first post...I will be in Vancouver Tuesday to Friday and will make another longish post next weekend regarding what the activation process was like.
And so it begins.....
Assimiliation in t-minus 2 days and counting.
Subscribe to:
Posts (Atom)
