Hello everyone,
I have decided to create a blog sharing about my experience with replacing my old cochlear implant with a new one. I want to share with you all because I have been asked by my brother, Steve, to share what it is like to hear everything again from a different level, if that's what we can call it.
However, before I start typing my blog narrating my experience, I would like to start off with my experience with my cochlear implant.
I was born with a questionable level of hearing. The reason why I say that is because we have no idea if I was born hearing, hard of hearing, or deaf. So my parents figured out that I was deaf by the time I was 18 months old. My mom typed up this entire blog about this process. You can find it here
My perspective of this experience is different. I learned at a young age, when I had hearing aids with two forms of communication, that I should be oral - that means communicating by voice and reading lips, relying on whatever sound I could receive. I knew my friends that I met in kindergarten at a wonderful elementary school wouldn't learn SEE for me. That was the form of sign language (but really, it isn't sign language at all. It's a method to help deaf students learn English in an efficient way) that I was using when I was diagnosed as deaf. My mom has mentioned in her blog that she observed I had chosen this method, and she is right. I just had a gut feeling, even as a young child, that they would not learn SEE. I went on through kindergarten with ease, but when I had reached the end of 1st grade, my hearing had dropped.
(From ucsfbenioffchildrens.org apparently)
My parents had a tough decision to make.
They struggled with the right fit for me. They didn't know what to do - they had to reach out to different support groups, all saying different things, and in the end, they decided to get me a cochlear implant. It was the best decision I thought they could make.
I'm biased, of course, because it was successful for me. Just because it was successful for me doesn't mean it will be successful for others. Keep that in mind, readers, that cochlear implants are not always the best decisions for deaf people out there. Sometimes, it's best to leave them deaf because it's who they are. If you believe they should get a cochlear implant. let them decide because it could change their life. Some could rebel and not want the cochlear implant. Some could want it but it isn't successful. Others just deal with it for the rest of their lives. For those that don't need a cochlear implant. they could have hearing aids, if it works for them. But being deaf isn't a bad thing. Being deaf is culture. It's a part of life. It doesn't mean deaf people are disabled. They are able to continue with life the way that hearing people can; they just can't hear.
I didn't have that perspective as I was growing up. I had no clue until I had arrived to a great university that had a huge deaf population. I was able to learn ASL in high school because I had met someone that I knew from preschool, but was unable to communicate with him. I had taken ASL classes at a community college while I was in high school. There's a book that is relied on most of the time, but must be there at all times in class because you can't learn everything from the book.
(From getglue.com)
When I arrived to the university, I was awkward, ignorant, and clueless to a lot of things. I improved my sign language and my social skills - I was able to learn more about different deaf individuals. They all had different backgrounds, which made for a rich and diverse deaf community.
Let's get back on track here - I got the cochlear implant July of 1998 - I was 7 1/2 years old. Having the cochlear implant worked out well, but then I got an infection that caused the incision to open up (I had no idea that it popped open. I thought it was just the infection that popped. Sorry to gross you all out). I had to have surgery the second time, probably summer of '99, because I was playing with one of my friends in my bedroom and I had hit my head against the canopy bed pole. Hitting my head had caused the metal that was placed for the cochlear implant to move out of place. When the metal moved out of place, I had gotten another infection that required for me to go into surgery. The surgery was necessary to move it back in place and clear up the infection. I had to have a shunt in my right arm for antibiotics every day after the surgery. I was already back at school for 3rd grade, I had to cover the shunt with one of my brother's old socks. We cut up the foot part of the sock and used the leg part, I guess you could call it that, to cover up the shunt because of my classmates. We definitely didn't want to freak them out with this weird thing in my arm.
Since the 2nd surgery, everything seemed to be working out well. I was communicating fine with my classmates. I had good friends - I even had my troublemaker year where I hurt a few girls during 4th grade. I was a normal girl growing up with a cochlear implant. Made it all the way to high school without realizing we had hit a problem with the cochlear implant. I had gone to House Ear Clinic because I noticed that I was hearing things normally, but they were muffled. I was wondering to myself why, so I had gone there to check up with my audiologist to ask why I was hearing muffled noises instead of clear voicing, sounds in the background, etc. She told me my t-mic part of the external part of the cochlear implant had gone bad. We switched out the t-mic with a new one, but then she noticed something wrong with the mapping part of my cochlear implant.
She told us (me and my mom) that half my electrodes were not working. They were not communicating with another - there were no signals from some of them. She did a few tests to get them to work, but they were dead. There are supposed to be 16 electrodes ( 8 pairs to communicate with each other ) but basically 5 or 6 electrodes were working at that time. I was shocked. My mom was shocked. Even my audiologist was shocked - she couldn't believe I was functioning just fine in the hearing world, communicating with all my friends and family, paying attention in class (sometimes. Students never pay full attention in classes). She assumed that the reason for my success for lasting this long without noticing a problem was based on my lip-reading skills. I have no idea if that's true - but it definitely applies to why I understand my family fine. I grew up with my family. Same applies for few of my friends - I knew a few of them since I was in kindergarten. I was picking up ways to understand them by lip-reading, without realizing it.
Unfortunately, Clarion (which is a part of Advanced Bionics) pulled themselves off the market so they could figure out the issues with their products that were causing facial nerve problems. It wasn't that there were too many patients that had the problem, but they were investigating a problem linked to people who had bacterial meningitis (which influenced their deafness) before the surgery. If they did have the meningitis, they were more likely to have facial nerve problems, which is what the company was trying to figure out. They wanted to solve the problem before they went back on the market. Don't take my word for this information though. This is what I've heard from a few people and a few resources - here's one http://www.asha.org/docs/html/TR2004-00041.html This report was typed up in 2003, so it might have been outdated and my information could be wrong. It's a possible conclusion as to why they had to withdraw the products off the market for research.
The audiologist decided to match up the remaining electrodes with each other, making it complicated, because they were not meant to be matched up together. But it's what had to happen in order for me to hear somewhat efficiently. It's not the best, but it was some sound I could retain for me to last through high school and college. I was devastated when I found out, but it did explain why I was missing out on a lot of information when I talked to friends of mine that I had just met in class for the first time or in groups. Naturally, groups are not the best environment for conversations because there's too many going at once and if I missed something, I missed it completely. There wasn't a lot of help around me because they weren't exposed to this kind of thing. They were still learning and I couldn't blame them for that - I shouldn't have to rely on them so much for hearing things - but the fact was that I just couldn't hear a lot of what was happening.
(From Advanced Bionics company)
Here is one of my old cochlear implants that I used from the first surgery all the way to 5th or 6th grade. It was pretty hard to wear for dancing, soccer, and trips out of school. It was pretty easy to have around school because I used to put it in a fanny pack or on a clip on my jeans.
When I entered college, it was a different world for me. No more struggles with communication. I only needed to learn more signs, but I picked up ASL easily as soon as I entered my deaf classes. I had two deaf classes in the fall semester of my freshman year and I have a lot of people in those classes to thank for my sign language skills. They helped me with my reception skills and my signing skills. I knew I needed improvement and they were patient with me. I refused to wear my cochlear implant here at the college because what was the point to wear it around fellow deaf classmates? What was the point if I knew I had interpreters? I was willing to voice for myself most of the time, but if I could have interpreters to help me understand what's happening in class, why bother using the cochlear implant? That was my method here at college. And honestly, it helped me out a lot. ASL could be limiting, but it didn't affect my grades at all. I've been doing fine here and I love it.
When I go home on weekends, drive on long drives somewhere, or for breaks, I do put my cochlear implant back on. It keeps me calm for when I'm with family and friends that don't know ASL. When I drive places, it keeps me calm because I can listen to music. Music is one of my favorite things and I don't know what I'd do without it. There were a few times here at the college that I wore my cochlear implant because I wanted to communicate with hearing classmates. I had reached the point of my education where I was no longer with other deaf students. I was finally in my classes that were focused on my major only. It's nice to be the only deaf student sometimes, but that meant group presentations were going to be difficult because there's a lot going on. However, my groups were always nice enough to make sure that I understood what was going on and I was able to get along with ease. I love all of my classmates so far and they're so sweet. They're understanding and they're willing to accommodate. I always thank them for helping me and I always put in ideas for the group, even if the ideas are not used later on. This is a team effort, not all about me, and I'm glad they have helped me realize that. I may have had that thought in mind that it was supposed to be about me and focused on how to communicate with me, but it is about working with each other to make the project successful.
The last tidbit of this background information: How did I decide to get the cochlear implant revision? It's pretty simple. I wanted easier communication with my family and friends. I had kept in mind about my future - how would I communicate with co-workers and people that I buy stuff from? I was raised in a world that I could be independent, asking and lip-reading while listening, and speaking up for myself. Understand that this is not against deaf, this is not saying deaf are lazy. This is not true at all. All individuals are different, deaf or hearing. We all have the same personalities. I think it sucks sometimes that deaf and hearing have different perspectives of these two worlds and how sometimes, it seems that they can't work together. I believe they can work together if they both make the effort. It's about compromises. It's about being there for each other. It's about understanding personalities and what is needed to make a great cohesion of the two worlds. But we all know this isn't a perfect world. I chose to replace the cochlear implant because it is a part of me. I accepted this as a part of me, and I know I can't choose to be completely deaf my whole life. Actually, I'm always going to be completely deaf. I AM completely deaf, but I choose to be able to hear to communicate and be myself. I want to listen to music. I want to hear babies cry, even though it's annoying. I want to hear dogs bark. I want to hear birds chirp. I want to hear everything, because I know that's what's around me, and I was able to hear this stuff before. And I want to hear everything again.
I realize that it might not work out. But I was willing to move on and do the next part of my life. I wanted to do this. No one influenced me to pick the cochlear implant - no pressure at all, only from my mind. This is my decision. It might not have been mine when my parents chose the cochlear implant for me, but I applaud them. I am proud of them that they were able to make such a difficult decision and have it be successful. It was a struggling experience for them and I'm happy that it worked out that this cochlear implant worked for me. Yes, there were negatives, but everyone has negatives in their lives.
That is my background information and I hope you understand some part of what I have experienced.
The next post will be about the process of surgery. The 3rd and more posts will be about my recovery process and how I am coping with the mapping process.
I hope you all are able to follow me along through this journey.
-Alicia
I have decided to create a blog sharing about my experience with replacing my old cochlear implant with a new one. I want to share with you all because I have been asked by my brother, Steve, to share what it is like to hear everything again from a different level, if that's what we can call it.
However, before I start typing my blog narrating my experience, I would like to start off with my experience with my cochlear implant.
I was born with a questionable level of hearing. The reason why I say that is because we have no idea if I was born hearing, hard of hearing, or deaf. So my parents figured out that I was deaf by the time I was 18 months old. My mom typed up this entire blog about this process. You can find it here
My perspective of this experience is different. I learned at a young age, when I had hearing aids with two forms of communication, that I should be oral - that means communicating by voice and reading lips, relying on whatever sound I could receive. I knew my friends that I met in kindergarten at a wonderful elementary school wouldn't learn SEE for me. That was the form of sign language (but really, it isn't sign language at all. It's a method to help deaf students learn English in an efficient way) that I was using when I was diagnosed as deaf. My mom has mentioned in her blog that she observed I had chosen this method, and she is right. I just had a gut feeling, even as a young child, that they would not learn SEE. I went on through kindergarten with ease, but when I had reached the end of 1st grade, my hearing had dropped.
My parents had a tough decision to make.
They struggled with the right fit for me. They didn't know what to do - they had to reach out to different support groups, all saying different things, and in the end, they decided to get me a cochlear implant. It was the best decision I thought they could make.
I'm biased, of course, because it was successful for me. Just because it was successful for me doesn't mean it will be successful for others. Keep that in mind, readers, that cochlear implants are not always the best decisions for deaf people out there. Sometimes, it's best to leave them deaf because it's who they are. If you believe they should get a cochlear implant. let them decide because it could change their life. Some could rebel and not want the cochlear implant. Some could want it but it isn't successful. Others just deal with it for the rest of their lives. For those that don't need a cochlear implant. they could have hearing aids, if it works for them. But being deaf isn't a bad thing. Being deaf is culture. It's a part of life. It doesn't mean deaf people are disabled. They are able to continue with life the way that hearing people can; they just can't hear.
I didn't have that perspective as I was growing up. I had no clue until I had arrived to a great university that had a huge deaf population. I was able to learn ASL in high school because I had met someone that I knew from preschool, but was unable to communicate with him. I had taken ASL classes at a community college while I was in high school. There's a book that is relied on most of the time, but must be there at all times in class because you can't learn everything from the book.
When I arrived to the university, I was awkward, ignorant, and clueless to a lot of things. I improved my sign language and my social skills - I was able to learn more about different deaf individuals. They all had different backgrounds, which made for a rich and diverse deaf community.
Let's get back on track here - I got the cochlear implant July of 1998 - I was 7 1/2 years old. Having the cochlear implant worked out well, but then I got an infection that caused the incision to open up (I had no idea that it popped open. I thought it was just the infection that popped. Sorry to gross you all out). I had to have surgery the second time, probably summer of '99, because I was playing with one of my friends in my bedroom and I had hit my head against the canopy bed pole. Hitting my head had caused the metal that was placed for the cochlear implant to move out of place. When the metal moved out of place, I had gotten another infection that required for me to go into surgery. The surgery was necessary to move it back in place and clear up the infection. I had to have a shunt in my right arm for antibiotics every day after the surgery. I was already back at school for 3rd grade, I had to cover the shunt with one of my brother's old socks. We cut up the foot part of the sock and used the leg part, I guess you could call it that, to cover up the shunt because of my classmates. We definitely didn't want to freak them out with this weird thing in my arm.
Since the 2nd surgery, everything seemed to be working out well. I was communicating fine with my classmates. I had good friends - I even had my troublemaker year where I hurt a few girls during 4th grade. I was a normal girl growing up with a cochlear implant. Made it all the way to high school without realizing we had hit a problem with the cochlear implant. I had gone to House Ear Clinic because I noticed that I was hearing things normally, but they were muffled. I was wondering to myself why, so I had gone there to check up with my audiologist to ask why I was hearing muffled noises instead of clear voicing, sounds in the background, etc. She told me my t-mic part of the external part of the cochlear implant had gone bad. We switched out the t-mic with a new one, but then she noticed something wrong with the mapping part of my cochlear implant.
She told us (me and my mom) that half my electrodes were not working. They were not communicating with another - there were no signals from some of them. She did a few tests to get them to work, but they were dead. There are supposed to be 16 electrodes ( 8 pairs to communicate with each other ) but basically 5 or 6 electrodes were working at that time. I was shocked. My mom was shocked. Even my audiologist was shocked - she couldn't believe I was functioning just fine in the hearing world, communicating with all my friends and family, paying attention in class (sometimes. Students never pay full attention in classes). She assumed that the reason for my success for lasting this long without noticing a problem was based on my lip-reading skills. I have no idea if that's true - but it definitely applies to why I understand my family fine. I grew up with my family. Same applies for few of my friends - I knew a few of them since I was in kindergarten. I was picking up ways to understand them by lip-reading, without realizing it.
Unfortunately, Clarion (which is a part of Advanced Bionics) pulled themselves off the market so they could figure out the issues with their products that were causing facial nerve problems. It wasn't that there were too many patients that had the problem, but they were investigating a problem linked to people who had bacterial meningitis (which influenced their deafness) before the surgery. If they did have the meningitis, they were more likely to have facial nerve problems, which is what the company was trying to figure out. They wanted to solve the problem before they went back on the market. Don't take my word for this information though. This is what I've heard from a few people and a few resources - here's one http://www.asha.org/docs/html/TR2004-00041.html This report was typed up in 2003, so it might have been outdated and my information could be wrong. It's a possible conclusion as to why they had to withdraw the products off the market for research.
The audiologist decided to match up the remaining electrodes with each other, making it complicated, because they were not meant to be matched up together. But it's what had to happen in order for me to hear somewhat efficiently. It's not the best, but it was some sound I could retain for me to last through high school and college. I was devastated when I found out, but it did explain why I was missing out on a lot of information when I talked to friends of mine that I had just met in class for the first time or in groups. Naturally, groups are not the best environment for conversations because there's too many going at once and if I missed something, I missed it completely. There wasn't a lot of help around me because they weren't exposed to this kind of thing. They were still learning and I couldn't blame them for that - I shouldn't have to rely on them so much for hearing things - but the fact was that I just couldn't hear a lot of what was happening.
Here is one of my old cochlear implants that I used from the first surgery all the way to 5th or 6th grade. It was pretty hard to wear for dancing, soccer, and trips out of school. It was pretty easy to have around school because I used to put it in a fanny pack or on a clip on my jeans.
When I entered college, it was a different world for me. No more struggles with communication. I only needed to learn more signs, but I picked up ASL easily as soon as I entered my deaf classes. I had two deaf classes in the fall semester of my freshman year and I have a lot of people in those classes to thank for my sign language skills. They helped me with my reception skills and my signing skills. I knew I needed improvement and they were patient with me. I refused to wear my cochlear implant here at the college because what was the point to wear it around fellow deaf classmates? What was the point if I knew I had interpreters? I was willing to voice for myself most of the time, but if I could have interpreters to help me understand what's happening in class, why bother using the cochlear implant? That was my method here at college. And honestly, it helped me out a lot. ASL could be limiting, but it didn't affect my grades at all. I've been doing fine here and I love it.
When I go home on weekends, drive on long drives somewhere, or for breaks, I do put my cochlear implant back on. It keeps me calm for when I'm with family and friends that don't know ASL. When I drive places, it keeps me calm because I can listen to music. Music is one of my favorite things and I don't know what I'd do without it. There were a few times here at the college that I wore my cochlear implant because I wanted to communicate with hearing classmates. I had reached the point of my education where I was no longer with other deaf students. I was finally in my classes that were focused on my major only. It's nice to be the only deaf student sometimes, but that meant group presentations were going to be difficult because there's a lot going on. However, my groups were always nice enough to make sure that I understood what was going on and I was able to get along with ease. I love all of my classmates so far and they're so sweet. They're understanding and they're willing to accommodate. I always thank them for helping me and I always put in ideas for the group, even if the ideas are not used later on. This is a team effort, not all about me, and I'm glad they have helped me realize that. I may have had that thought in mind that it was supposed to be about me and focused on how to communicate with me, but it is about working with each other to make the project successful.
The last tidbit of this background information: How did I decide to get the cochlear implant revision? It's pretty simple. I wanted easier communication with my family and friends. I had kept in mind about my future - how would I communicate with co-workers and people that I buy stuff from? I was raised in a world that I could be independent, asking and lip-reading while listening, and speaking up for myself. Understand that this is not against deaf, this is not saying deaf are lazy. This is not true at all. All individuals are different, deaf or hearing. We all have the same personalities. I think it sucks sometimes that deaf and hearing have different perspectives of these two worlds and how sometimes, it seems that they can't work together. I believe they can work together if they both make the effort. It's about compromises. It's about being there for each other. It's about understanding personalities and what is needed to make a great cohesion of the two worlds. But we all know this isn't a perfect world. I chose to replace the cochlear implant because it is a part of me. I accepted this as a part of me, and I know I can't choose to be completely deaf my whole life. Actually, I'm always going to be completely deaf. I AM completely deaf, but I choose to be able to hear to communicate and be myself. I want to listen to music. I want to hear babies cry, even though it's annoying. I want to hear dogs bark. I want to hear birds chirp. I want to hear everything, because I know that's what's around me, and I was able to hear this stuff before. And I want to hear everything again.
I realize that it might not work out. But I was willing to move on and do the next part of my life. I wanted to do this. No one influenced me to pick the cochlear implant - no pressure at all, only from my mind. This is my decision. It might not have been mine when my parents chose the cochlear implant for me, but I applaud them. I am proud of them that they were able to make such a difficult decision and have it be successful. It was a struggling experience for them and I'm happy that it worked out that this cochlear implant worked for me. Yes, there were negatives, but everyone has negatives in their lives.
That is my background information and I hope you understand some part of what I have experienced.
The next post will be about the process of surgery. The 3rd and more posts will be about my recovery process and how I am coping with the mapping process.
I hope you all are able to follow me along through this journey.
-Alicia
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