neecy
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My audiologist asked me to write out my CI story for his department's newsletter and I finished it today. I thought I'd copy it here, if anyone might want to read it - and for any future people who are considering a CI. Its been a very wonderful, emotional, thrilling, and amazing year.
---------------
I sometimes wonder if adaptation to a disability is easier for someone who has been born that way, as opposed to suddenly “being without,” later in life. The latter is the case for me, as I was born hearing, and became deaf after a bout of bacterial meningitis when I was 9 years old. There’s not much of a recollection of my initial transition period, beyond a lot of fear and confusion. All I remember is waking up, (from a 3 week coma, I was later told) and finding myself in a hospital bed, surrounded by people who I could SEE were talking, but noticing no sound was coming out of their mouths. That was my introduction to the world of deafness. Thankfully, I had the support of a very loving, caring family, as well as friends, doctors, nurses, and audiologists. The initial shock passed quickly, and I faced the challenges of having to re-learn to communicate and learn to understand that from then on, my world would be a silent one.
As I was the only deaf person in my immediate and extended family, and the only deaf child in my small community, the challenges that I, my parents, friends, and teachers faced were hard ones. With the help of my mother, I quickly picked up lip-reading, and
learned some basic sign language. Others learned to accommodate my limitations by speaking clearly, and keeping a pen & paper handy. School was a challenge of a different kind, and I was unable to participate very much, so for the next several years I completed my schoolwork with the help of a teacher’s aid who taught me aside from the rest of the classroom except for “activity” type lessons. One year after I went deaf, I was fitted with a BTE hearing aid and while my parents were warned ahead of time that the benefit of the aid would be extremely minimal, I found that *some sound* was better than nothing at all. The next year I received another BTE for my other ear, and while they didn’t allow me to “hear”, per-se, I found that they did help me with lip-reading AND with a sense of security.
In the early 80’s, my parents had been in contact with the late Dr. Doyle at St Paul’s Hospital, and we arranged to fly out and meet him and run some tests on me to see if this new “bionic ear” as my parents called it would benefit me. While there I underwent various tests with a very kind and sweet Dr. Pijl! He made me feel so comfortable and left a lasting impression on me. Unfortunately at the time the 2-channel CI was determined to be incompatible and we returned home. Over the next 5 years we returned twice, if I recall correctly, to re-evaluate but science still had a ways to go.
Fast-forward 15 years, I graduated from high school, went to college, but through it all, I had kept the dream that one day I would be able to hear again. I had been reading more and more about the newest CI technology, and had held the hope that “maybe one day” I might be able to get one. So, during the summer of 2004, I decided it was time to investigate once again, if perhaps NOW, I could benefit from it. My Mother and I once again contacted the audiology department at St. Paul’s, and were thrilled to find out that Dr. Pijl was still there!! More tests ensured, and it was determined that YES! I finally was a suitable candidate for a CI! I was on cloud 9, and then some when he told me. Unfortunately I was also told that I might have to wait a while as the wait- list was lengthy, but to keep a positive outlook. On December 17th, Dr. Pijl phoned and asked me of I would be interested in participating in the Cochlear Nucleus System 4 (now called Freedom) clinical trials. WAS I EVER!!!!! Quickly, more tests were done (MRI, etc) and implantation was scheduled for January 24th, 2005.
The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 minutes, 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. The following day we went back home to Nanaimo, and I was feeling just fine. A few dizzy spells, which I had been told were normal, and some minimal pain and that was it. I healed well and was eagerly awaiting the phone call from Dr. Pijl that would tell me when my activation would be. Finally the call came and the activation was scheduled for April 12 – 15.
I was so excited, nervous, and trying NOT to get my hopes up about anything. I’d been warned beforehand that what I “heard” would be very alien compared to what I remembered from more than 20 years ago, but I was cautiously optimistic. When we got there, first Dr. Pijl explained the workings of the implant itself, and then hooked me up to his computer and told me he was going to give me a tone and to tell him if I could hear it.
WOW!!! It was loud, it was clear, and I wanted MORE! So we mapped out the electrodes, and he turned it on.
Now – I had always had a bit of difficulty lip-reading Dr. Pijl- but from the moment he switched my CI on, I understood him perfectly. THAT’S how amazing it was. I was completely floored. My Mom, who had come to share my activation experience with me, was in tears.
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...through 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! It’s 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 cellophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.
Then after lunch, we meet with Cindy Gustin, the audiologist. 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 gave me a list with words on it, three words to a line. She wanted me to pick out which word she was saying without lip-reading or looking at her face. So, we started, I get one right...then another...then another... 3/4 of the way down the page, she took the paper out of my hand and says, "well THAT'S too easy for you!" So we moved onto a different test. She said she wanted me to follow along while she read 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 ways down THAT list, again she says "too easy.”
So she handed me another paper with groups of 4 sentences. She said she was 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 said the first and I'm reading the paper. That was easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".
Then, she got ready to say the 2nd sentence, and on a whim, I just turned my head to the left and DIDN’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 had understood in 24 years, and I understood it completely. Oh man, that’s when it really hit home. Mind-blowing doesn't even BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was crying...it was just so dang emotional.
That kind of “set the stage” for everything else that followed. It just “clicked” together, like pieces of a jigsaw puzzle. Because I was part of the Clinical Trials, I had to try several different mapping strategies, without knowing which was which, and return every 2 weeks for re-mapping and tweaking of the programs. Some, I liked. Some, I HATED. I remember one map was so awful, my Mom called Dr. Pijl to ask him of there was anything he could do because I was absolutely miserable with the map he had given me, compared to the maps I’d had previously. It was a struggle sometimes to go from something I REALLY liked, and was working well with – to something that made everything sound completely different and then “re-teach” myself to use that map and try to understand everything all over again.
I was amazing myself though – 6 days after activation I was able to watch the News Hour with Tony Parsons without closed captioning! That blew me away. I was listening to music again and it was so beautiful. My brother went out and bought me an ABBA CD, as they were my favorite group prior to loosing my hearing. I was soon buying CD’s and listening to those my friends and family had at every chance. I went to the beach and heard the waves breaking on the shore. I heard my niece and nephew. One afternoon, my Dad told me to come outside – and hear the thunder of an approaching thunderstorm. At Christmas I received an MP3 player and with my personal audio cable I plugged it into my CI and the clarity was unbelievable. I now listen to music with it daily. Not a day went by that didn’t fill me with the wonder of a new sound, or a new experience.
One of the BIGGEST events happened 3 months post-activation, when I had my first phone conversation with a very special friend of mine. It was unbelievable – I went out and bought myself my own phone that day! I also was able to follow conversations on my Dad’s CB radio.
Everything surpassed even my wildest dreams. I think that, the hearing factor aside, the biggest change has been in *MYSELF.* My confidence level is unbelievable. No longer do I hide in the background when friends and family meet. No longer do I walk with my head down, so that I can't catch somebody's eye and then not be able to understand them if they try to engage me in a conversation. No longer do I say "No, I'd rather stay home." when asked if I'd like to attend a gathering or a function. I walk with my head up, I talk to total strangers, I recognize music playing in a store, and I can even sometimes understand what’s being said on a public address system. It’s been a life-altering experience and it just keeps getting better. In March, I decided I want to go back to college, and in April I start classes, WITHOUT an interpreter, something that would have been impossible to attempt before my CI.
A while back, 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, because she can see exactly what I mean regarding what’s 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 wondrous 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.
---------------
I sometimes wonder if adaptation to a disability is easier for someone who has been born that way, as opposed to suddenly “being without,” later in life. The latter is the case for me, as I was born hearing, and became deaf after a bout of bacterial meningitis when I was 9 years old. There’s not much of a recollection of my initial transition period, beyond a lot of fear and confusion. All I remember is waking up, (from a 3 week coma, I was later told) and finding myself in a hospital bed, surrounded by people who I could SEE were talking, but noticing no sound was coming out of their mouths. That was my introduction to the world of deafness. Thankfully, I had the support of a very loving, caring family, as well as friends, doctors, nurses, and audiologists. The initial shock passed quickly, and I faced the challenges of having to re-learn to communicate and learn to understand that from then on, my world would be a silent one.
As I was the only deaf person in my immediate and extended family, and the only deaf child in my small community, the challenges that I, my parents, friends, and teachers faced were hard ones. With the help of my mother, I quickly picked up lip-reading, and
learned some basic sign language. Others learned to accommodate my limitations by speaking clearly, and keeping a pen & paper handy. School was a challenge of a different kind, and I was unable to participate very much, so for the next several years I completed my schoolwork with the help of a teacher’s aid who taught me aside from the rest of the classroom except for “activity” type lessons. One year after I went deaf, I was fitted with a BTE hearing aid and while my parents were warned ahead of time that the benefit of the aid would be extremely minimal, I found that *some sound* was better than nothing at all. The next year I received another BTE for my other ear, and while they didn’t allow me to “hear”, per-se, I found that they did help me with lip-reading AND with a sense of security.
In the early 80’s, my parents had been in contact with the late Dr. Doyle at St Paul’s Hospital, and we arranged to fly out and meet him and run some tests on me to see if this new “bionic ear” as my parents called it would benefit me. While there I underwent various tests with a very kind and sweet Dr. Pijl! He made me feel so comfortable and left a lasting impression on me. Unfortunately at the time the 2-channel CI was determined to be incompatible and we returned home. Over the next 5 years we returned twice, if I recall correctly, to re-evaluate but science still had a ways to go.
Fast-forward 15 years, I graduated from high school, went to college, but through it all, I had kept the dream that one day I would be able to hear again. I had been reading more and more about the newest CI technology, and had held the hope that “maybe one day” I might be able to get one. So, during the summer of 2004, I decided it was time to investigate once again, if perhaps NOW, I could benefit from it. My Mother and I once again contacted the audiology department at St. Paul’s, and were thrilled to find out that Dr. Pijl was still there!! More tests ensured, and it was determined that YES! I finally was a suitable candidate for a CI! I was on cloud 9, and then some when he told me. Unfortunately I was also told that I might have to wait a while as the wait- list was lengthy, but to keep a positive outlook. On December 17th, Dr. Pijl phoned and asked me of I would be interested in participating in the Cochlear Nucleus System 4 (now called Freedom) clinical trials. WAS I EVER!!!!! Quickly, more tests were done (MRI, etc) and implantation was scheduled for January 24th, 2005.
The surgery went off without a hitch!!!!! It couldn’t have been better. Coming out of anesthesia I was only nauseous for about 20 minutes, 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. The following day we went back home to Nanaimo, and I was feeling just fine. A few dizzy spells, which I had been told were normal, and some minimal pain and that was it. I healed well and was eagerly awaiting the phone call from Dr. Pijl that would tell me when my activation would be. Finally the call came and the activation was scheduled for April 12 – 15.
I was so excited, nervous, and trying NOT to get my hopes up about anything. I’d been warned beforehand that what I “heard” would be very alien compared to what I remembered from more than 20 years ago, but I was cautiously optimistic. When we got there, first Dr. Pijl explained the workings of the implant itself, and then hooked me up to his computer and told me he was going to give me a tone and to tell him if I could hear it.
WOW!!! It was loud, it was clear, and I wanted MORE! So we mapped out the electrodes, and he turned it on.
Now – I had always had a bit of difficulty lip-reading Dr. Pijl- but from the moment he switched my CI on, I understood him perfectly. THAT’S how amazing it was. I was completely floored. My Mom, who had come to share my activation experience with me, was in tears.
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...through 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! It’s 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 cellophane. With my hearing aid it would just sound like a high pitched rustle - but the sound I was hearing was 1000x different.
Then after lunch, we meet with Cindy Gustin, the audiologist. 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 gave me a list with words on it, three words to a line. She wanted me to pick out which word she was saying without lip-reading or looking at her face. So, we started, I get one right...then another...then another... 3/4 of the way down the page, she took the paper out of my hand and says, "well THAT'S too easy for you!" So we moved onto a different test. She said she wanted me to follow along while she read 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 ways down THAT list, again she says "too easy.”
So she handed me another paper with groups of 4 sentences. She said she was 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 said the first and I'm reading the paper. That was easy to discern because I can put the sound together with what I was reading "The Goldfish is in the bowl".
Then, she got ready to say the 2nd sentence, and on a whim, I just turned my head to the left and DIDN’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 had understood in 24 years, and I understood it completely. Oh man, that’s when it really hit home. Mind-blowing doesn't even BEGIN to describe how I felt. I was crying. Mom was crying, Cindy was crying...it was just so dang emotional.
That kind of “set the stage” for everything else that followed. It just “clicked” together, like pieces of a jigsaw puzzle. Because I was part of the Clinical Trials, I had to try several different mapping strategies, without knowing which was which, and return every 2 weeks for re-mapping and tweaking of the programs. Some, I liked. Some, I HATED. I remember one map was so awful, my Mom called Dr. Pijl to ask him of there was anything he could do because I was absolutely miserable with the map he had given me, compared to the maps I’d had previously. It was a struggle sometimes to go from something I REALLY liked, and was working well with – to something that made everything sound completely different and then “re-teach” myself to use that map and try to understand everything all over again.
I was amazing myself though – 6 days after activation I was able to watch the News Hour with Tony Parsons without closed captioning! That blew me away. I was listening to music again and it was so beautiful. My brother went out and bought me an ABBA CD, as they were my favorite group prior to loosing my hearing. I was soon buying CD’s and listening to those my friends and family had at every chance. I went to the beach and heard the waves breaking on the shore. I heard my niece and nephew. One afternoon, my Dad told me to come outside – and hear the thunder of an approaching thunderstorm. At Christmas I received an MP3 player and with my personal audio cable I plugged it into my CI and the clarity was unbelievable. I now listen to music with it daily. Not a day went by that didn’t fill me with the wonder of a new sound, or a new experience.
One of the BIGGEST events happened 3 months post-activation, when I had my first phone conversation with a very special friend of mine. It was unbelievable – I went out and bought myself my own phone that day! I also was able to follow conversations on my Dad’s CB radio.
Everything surpassed even my wildest dreams. I think that, the hearing factor aside, the biggest change has been in *MYSELF.* My confidence level is unbelievable. No longer do I hide in the background when friends and family meet. No longer do I walk with my head down, so that I can't catch somebody's eye and then not be able to understand them if they try to engage me in a conversation. No longer do I say "No, I'd rather stay home." when asked if I'd like to attend a gathering or a function. I walk with my head up, I talk to total strangers, I recognize music playing in a store, and I can even sometimes understand what’s being said on a public address system. It’s been a life-altering experience and it just keeps getting better. In March, I decided I want to go back to college, and in April I start classes, WITHOUT an interpreter, something that would have been impossible to attempt before my CI.
A while back, 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, because she can see exactly what I mean regarding what’s 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 wondrous 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.
for sharing it with us. 
