Tired of "hearing" after 15 years?

cterry7799

cterry7799

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Is anyone that was late deafened, got a c.i., then decided to not wear it? How do you decide that? Was it a difficult decision? Do you have any advice for me--things I should weigh? I lost my hearing 18 years ago when I was 12. I got a CI nucleus 22 on my right when I was 15 ahd have had it ever since...15 years now. I upgrade processors with my own money each time they introduce one. I am on the third one now...the Esprit 3g and waiting for the freedom next, I guess. I have been mainstreamed my whole life and only now since turning 30 I have gone to Cal state northridge to learn ASL and meet other deaf. I was motivated to learn ASL by my son age 2 and the fact I can't communicte with him...either with sign or speech(I can't understand baby speech with my c.i., but my signing is not enough to teach him, but I try. it gets harder every day as his sentences get bigger and bigger). Anyway, I am a deaf studies major, and learning ASL slow and sure, but more importantly learning about being Deaf. I am having lots of conflicted feelings now about my C.I, and feeling like a person that is both deaf and hearing, or neither deaf nor hearing. I went to a silent weekend 2 weeks ago and for the first time in my life I got to experience walking outdoors into the real world without my c.i. on. It totally blew me away. I felt so free. I kinda started wishing I could do that everyday. I have had "hearing" and perfect speech and "functioned(used loosely)" in the hearing world for many many years and don't feel I have much to show for it anyway. Lately, I have been wearing my CI "just in case" but not actually turning it on and my life is no different with it off. sometimes I turn it on to use the telephone, or listen to an old song, but that's about it. I actually have just decided to write/sign if I need to communicate with a hearing. Yea, I know I can talk but I don't like to with my c.i. off anyway. Maybe I am bored with my c.i.? Any suggestions?
 
What can you do? That is something that should be decided on your own.

Everyone has their own preference for how they wear their CIs. Some people get tired of it and stop wearing it. Some were used to the silence of not having CI, then when they got CI... they felt they weren't ready for sound. So, they stopped wearing it.

There are a lot of reasons for stopping and continuing.

Have you made a list of PROs and CONs?
 
Yea, I understand it should be decided on your own. I'd love to make a list of pros and cons but I am too much a ball of mixed up feelings to think that clearly. I was hoping to maybe find some other perspectives....particularly from peoople that have experienced it, so that I could get to a point of clarity to sit down and make a pro/con list.
 
I am not a CI user but like you I am late deafend. My experiences are more recent though and just went throught the process of deciding whether or not to look into a CI at this time.

After living for about 2 weeks in silence I have decided to hold off on the CI process. I am doing fine with a combination of speech reading, verbal communication, note writing, and sign.

I think it is a very personal choice that you need to make. Everyone is different, and have different expectations for their life.

If you choose to not use it one week and it does work you can always use it again. Do what you feel is right for your life! Good Luck!
 
As the others said, it's a personal choice and it seems to me that as far as your perpective is concerned, the answer lies in your own post.

You asked about issues you should weigh. The only things I can think of is:

1. If you do not wear the CI most of the time then eventually, due to lack of use, the ability to do what you can do now e.g. use of the phone may become more difficult. However you have the TTY, relay etc to overcome this and as you have said you have started writing notes. If you are happy with this then this is not a problem.

2. Is your son hearing? How much do you want to be involved in his world in the future? e.g. if he becomes musical then do you want to be able to hear what he does at school? For me this is important but for you, it may not be. It's personal.

Maybe you should give yourself a 3 month trial without CI at all before you commit to anything. I've heard stories of people not wearing their HAs for a few years and then they started wearing them again because their preferences and desires changed again.

Best wishes in whatever you decide! :)
 
I can't imagine ever getting "tired" of hearing myself. But then again, I'm totally geared to hearing anyway (FYI...I've always been HOH).

Having said that, it is a personal issue that you will need to decide which way to go. Do what is best for you. If not hearing works better, then do it.

Best of success in your decision!
 
While this is, indeed, a very personal decision that you must make for yourself, it certainly sounds as if you are just now learning what it is to be Deaf. I commend you for stepping up to take the journey. It requires courage, especially when it contradicts all that one has known before. I wish you luck. Hang around, and you will get the perspective not just of CI users, but of HA users that have been "mainstreamed" in an oral environment and came late tothe deaf/Deaf community. I'm sure their stories will offer you some insight.

I do have a question for you. Since you were still a minor, but old enough to have input regarding your implantation, was the decision based on the idea that integration into the hearing world was your only option? I ask because you said you have just now had contact with the deaf community and are just learning ASL.

Welcome, and good luck to you.
 
jillio said:
I do have a question for you. Since you were still a minor, but old enough to have input regarding your implantation, was the decision based on the idea that integration into the hearing world was your only option?

Welcome, and good luck to you.
Click to expand...

To be honest Jillio, most of that period after I lost my hearing I am really disconnected from--and everythings fuzzy. The "gist" of what I remember...keep in mind this was waaay back when c.i.'s were still pretty new to market(1992), basically, it was presented to me as "you'll be able to hear again." I remember getting back and forth on planes to see doctors in other states. I remember seeing my mother talk to those people while I was there, and while tests were performed but not really an active participant. I don't think I had a full story on it other than, like you said, "integration is the only option" (magnified x10 because I was already hearing and already had speech so they really were selling it as a "miracle cure all" at age 14/15 I just wanted my old life back and those doctors had me believing they could give it to me). I remember meeting a person with a c.i. but not meeting a Deaf person that uses ASL. But, again, I am pretty sure the c.i. recipient was meeting my mom and I was just there and my mom would now and then tell me what she'd heard. I can't say for certain though, everythings just a blur.

I don't want to sound against c.i. at all, because it really has been a godsend for me, especially in my academics more than anything else. Ironically though when the c.i. was less effective 15 years ago, I was happier with it. Now with my espirit 3g(I've had it for 2 years now), for the first time I can use the telephone and I score 100% accuracy on my blind sentence recognition, and music sounds more like music than ever. But with all the improvement, I guess my expectations have risen. Like, ok, now I can understand what people are saying, so now FINALLY after all these years I'll be able to have real friends and relationships again--and they'll be just as easy for me as they were before I lost my hearing. But I am just not finding that to be the case. I feel like I'm behind some glass wall where I can see and hear what's going on, but I can't touch anybody on the other side. And I didn't even know I felt that way, or rather couldn't have put into words what this undefined feeling was, until now that I have met Deaf people and communicated with sign and wow that feelings not there anymore.

And, some people have suggested a trial going without my c.i.. But, like another person noted--one that I assume has a ci--if you stop using the ci then when you put it back on it's you basically have to retrain your brain to hear all over again. That's what really makes it all so difficult to decide--knowing that if I want to go back to hearing and my ci then I may lose some of my proficiency. Also, the fear that I have had the same implant for 15 years...exactly how much longer will it last? what if not using it increases the likelihood of failure at this point?

As far as my son, I just want to be the best parent I can be for him. I think, regardless if I could hear his music or not, I would still be front row center cheering him. And, like every parent, I would be no more or less proud based upon how the music sounded...just a matter of "hey that's my kid up there," ya know? Right now, I have moved out on my own for the first time...just my son and I. Before we lived with my parents and my sister and her children, etc. a full house of hearing and speaking people. When he was a baby he knew some beginning signs, but as expected, when the hearing people didn't respond(even when I asked and tried to teach them repeatedly) he stopped using them. But, now he is starting to understand mommy doesn't respond to his voice and we are both very frustrated by the situation. He does usually understand and respond to my signs, but doesn't use them himself (he's basically delayed in sign language, the same way he is delayed in speech). He is failing at both speech and sign language, but he has more exposure to speech at school and with my other family, etc. so he is making greater gains there. I don't want him to be like all the other people that put the responsibility of communication solely on me . "I want milk, therefore, mommy needs to turn on her c.i. so she can hear me say milk and go get it." etc... All my other hearing family and friends are already like that. In fact, if I decided to not use my c.i. I don't have a lot of faith they would put any effort into communicating with me. I feel like if I take the responsibility to teach my son or other family a few signs then the least they can do is try to use them. But even my family members that know some signs don't try and prefer to wait for me to turn on my ci. "i'll tell you later. go get your batteries, or etc. etc."


I want my son to be exposed to other people like mommy, but that's hard as well because I am new to ASL and the Deaf community myself. And, maybe it's psychological or something, but with my ci on I am so busy trying to listen that I can't create the pictures I need to see with ASL. When it's off-- my signing comprehension and even usage dramatically improve--so that's another issue.

So, yea sorry for writing so much. This is basically all the story, though.
 
cterry7799 said:
And, some people have suggested a trial going without my c.i.. But, like another person noted--one that I assume has a ci--if you stop using the ci then when you put it back on it's you basically have to retrain your brain to hear all over again. That's what really makes it all so difficult to decide--knowing that if I want to go back to hearing and my ci then I may lose some of my proficiency. Also, the fear that I have had the same implant for 15 years...exactly how much longer will it last? what if not using it increases the likelihood of failure at this point?
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I just wanted to make a point here. My audiologist told me it takes about 9 years for you to lose auditory memory, as in perceiving the sounds. So if a few years later you changed your mind, you most likely would be able to pick up where you left off within about 6 months, especially since you are a post lingually deaf person.

It sounds like a trial would do you good to help clarify your thoughts. Maybe you could write a letter to your family telling them how you feel about how it's made your responsibility to communicate rather than give and take on both sides.

You've made a good step in moving out of home. I think it will help your relationship with your son.
 
Thank you so much for that information! Makes me feel so much less stress about that aspect of turning it off. Even after a few waking hours with it off, I can usually detect the difference in sound quality for like half an hour. And, the longer waking hours with it off, the longer the sound quality is degraded--so that always had me concerned I wouldn't be able to turn it off for any amount of time and then go back. I think I will see my audiologist to find out about the failure question and see what she thinks about a trial turn off.
 
My experience is limited to HA, but perhaps a bit similar to CI in some areas. I have used HA in periods of my life. Right now I use it sometimes because it's an advantage at the work in some situations, but else I have stopped using it, just because I have other stuff that is more interesting to do, and I prefer to chat in sign language. I have been off HA for years, never suffered any problems returning to "hearing". A man here stopped using HA for 40 years, and returned to them just because he wanted to, and he did not complain about worse hearing when I asked. Regarding the claim that one loose hearing memory, would be interesting to know who this have been validated on. Late deafned who haven't used any listening devices after they went deaf, and waited for years to recieve one, perhaps experience more hassle than those who got hearing devices right after hearing loss? Or children who don't get implanted before an age of 6, showing scoring lower on listening skills than those who have had an implant for 4 years already at the age of 6? Comparisation between CI and HA users? Does the hearing memory affect those who stop use CI or HA, even if they are long time familar of the sounds produced with those devices? Or does it count for everyone?

Good luck making a decision whatever it will be, it's so many ways to wear and use listening devices, and enjoy the ASL journey!
 
flip said:
Regarding the claim that one loose hearing memory, would be interesting to know who this have been validated on. Late deafned who haven't used any listening devices after they went deaf, and waited for years to recieve one, perhaps experience more hassle than those who got hearing devices right after hearing loss? Or children who don't get implanted before an age of 6, showing scoring lower on listening skills than those who have had an implant for 4 years already at the age of 6? Comparisation between CI and HA users? Does the hearing memory affect those who stop use CI or HA, even if they are long time familar of the sounds produced with those devices? Or does it count for everyone?
Click to expand...

HA never worked for me so i can't really say about that. I do understand about the importance of hearing memory with the ci though, and my best guess is that it mainly applies to the ci. With the c.i. I am not HEARING a sound so much as I am RECOGNIZING a sound. As a person that could hear previously, I do have a memory of sound(for example a dog barking). With the ci the sound is different then when I was hearing, but the memory of that sound aids in the speed of my recognition. I still have to learn to RECOGNIZE that particular sound sensation can be attributed to a dog barking, but because I know what a dog barking SOUNDS like, I can recognize it faster. The more I experience the c.i. sound sensation of a dog barking, and recognize it is a dog barking, the more it starts to SOUND like a dog barking. Like I said before, from experience with the c.i. I know that if I stop using it for a few hours or days or whatever and then turn it back on...what happens is that the sound is more distorted, i.e. more sounding like a robot/computer etc. lots of pips and squeaks, and not as quickly or easily RECOGNIZED. The longer it's been off, the longer the sound is distorted once it's back on. The more consistently you wear it the more quickly and easily the recognition happens and the SOUND is a lot more fluid and "natural." The memory of sound is important because the quick and consistent recognition by your brain makes the c.i. pips and squeaks into "sounds." It is really a use it or lose it deal. but I can only speak for myself and that is how I would describe it. The point that I got from the post about memory was that I could go many years without the ci being on, but I would not likely have to suffer through distorted pips and squeaks for longer than 6 months before I had SOUND again.
 
To quote a brilliant woman: "They're your ears. Wear them when you want to."

Seriously, if you want to be exposed to a quieter world, if that's what's making you happy.. take it off. The world wont end, and it'll still work if you change your mind. There's nothing to stop you from using it never, or only using it in specific situations, or using it from the moment you wake up to the moment you sleep.. that choice is entirely yours.

However, I can suggest that you try and expose your son to signing deaf children (and signing deaf people in general) as it'll give him better exposure to ASL than you might be able to provide him right now, also ensuring that eventually, you'll be able to understand what he's saying, CI or not.

We take our ears off all the time- at least, I sure do, and most deaf/hoh people I know do. It's nothing to be ashamed of or alarmed by in any way- there's nothing inferior or wrong with you, you're just choosing not to wear a mere device.
 
I was reading my way through and one part I picked up - mom needs to put in her ci so she can hear me say milk and get it.

My daughter will do that to me when I am not wearing my cis. I allow myself Saturday and Sunday morning to relax without my CIs on. It gives my brain and myself a break. That way I can enjoy some quiet.

I am going to give a different suggestion. Wear the CI but put the volume on very low just enough to pick up environment sounds. It will still allow your brain to retain auditory memory, but filters out the sounds.

All of us needs a break from the noise of the world. Each one is different. I work in my breaks weekly. If I go too long without my CIs my tinnutis comes back. As soon as I put them on it goes away. It was the same with my hearing aids. I'm sure if I don't wear them for days, my migraines will come back too. I don't want to go back to the pre-CI days, it was too painful. With migraines and tinnutis.
 
cterry7799 said:
To be honest Jillio, most of that period after I lost my hearing I am really disconnected from--and everythings fuzzy. The "gist" of what I remember...keep in mind this was waaay back when c.i.'s were still pretty new to market(1992), basically, it was presented to me as "you'll be able to hear again." I remember getting back and forth on planes to see doctors in other states. I remember seeing my mother talk to those people while I was there, and while tests were performed but not really an active participant. I don't think I had a full story on it other than, like you said, "integration is the only option" (magnified x10 because I was already hearing and already had speech so they really were selling it as a "miracle cure all" at age 14/15 I just wanted my old life back and those doctors had me believing they could give it to me). I remember meeting a person with a c.i. but not meeting a Deaf person that uses ASL. But, again, I am pretty sure the c.i. recipient was meeting my mom and I was just there and my mom would now and then tell me what she'd heard. I can't say for certain though, everythings just a blur.

I don't want to sound against c.i. at all, because it really has been a godsend for me, especially in my academics more than anything else. Ironically though when the c.i. was less effective 15 years ago, I was happier with it. Now with my espirit 3g(I've had it for 2 years now), for the first time I can use the telephone and I score 100% accuracy on my blind sentence recognition, and music sounds more like music than ever. But with all the improvement, I guess my expectations have risen. Like, ok, now I can understand what people are saying, so now FINALLY after all these years I'll be able to have real friends and relationships again--and they'll be just as easy for me as they were before I lost my hearing. But I am just not finding that to be the case. I feel like I'm behind some glass wall where I can see and hear what's going on, but I can't touch anybody on the other side. And I didn't even know I felt that way, or rather couldn't have put into words what this undefined feeling was, until now that I have met Deaf people and communicated with sign and wow that feelings not there anymore.

And, some people have suggested a trial going without my c.i.. But, like another person noted--one that I assume has a ci--if you stop using the ci then when you put it back on it's you basically have to retrain your brain to hear all over again. That's what really makes it all so difficult to decide--knowing that if I want to go back to hearing and my ci then I may lose some of my proficiency. Also, the fear that I have had the same implant for 15 years...exactly how much longer will it last? what if not using it increases the likelihood of failure at this point?

As far as my son, I just want to be the best parent I can be for him. I think, regardless if I could hear his music or not, I would still be front row center cheering him. And, like every parent, I would be no more or less proud based upon how the music sounded...just a matter of "hey that's my kid up there," ya know? Right now, I have moved out on my own for the first time...just my son and I. Before we lived with my parents and my sister and her children, etc. a full house of hearing and speaking people. When he was a baby he knew some beginning signs, but as expected, when the hearing people didn't respond(even when I asked and tried to teach them repeatedly) he stopped using them. But, now he is starting to understand mommy doesn't respond to his voice and we are both very frustrated by the situation. He does usually understand and respond to my signs, but doesn't use them himself (he's basically delayed in sign language, the same way he is delayed in speech). He is failing at both speech and sign language, but he has more exposure to speech at school and with my other family, etc. so he is making greater gains there. I don't want him to be like all the other people that put the responsibility of communication solely on me . "I want milk, therefore, mommy needs to turn on her c.i. so she can hear me say milk and go get it." etc... All my other hearing family and friends are already like that. In fact, if I decided to not use my c.i. I don't have a lot of faith they would put any effort into communicating with me. I feel like if I take the responsibility to teach my son or other family a few signs then the least they can do is try to use them. But even my family members that know some signs don't try and prefer to wait for me to turn on my ci. "i'll tell you later. go get your batteries, or etc. etc."


I want my son to be exposed to other people like mommy, but that's hard as well because I am new to ASL and the Deaf community myself. And, maybe it's psychological or something, but with my ci on I am so busy trying to listen that I can't create the pictures I need to see with ASL. When it's off-- my signing comprehension and even usage dramatically improve--so that's another issue.

So, yea sorry for writing so much. This is basically all the story, though.
Click to expand...

Don't apologize for writng so much. I enjoyed reading your story, and thank you for sharing so openly. Since you are new to the forum, I'll tell you up front that I am not deaf. I am the parent of a Deaf son (not implanted). He has been deaf since birth.

I can relate so much to your desire to share your son's world and be the best mother you can be to him. I experienced the same when we discovered that my son was deaf. As a consequence, I have tried to enter into his world through contact with and exposure to the Deaf community. I'm sure we are experiencing the same emotions in that regard...just a reverse of the situation. If you would like to read more about my story, jclarke has a thread in Deaf Culture called Two Worlds. My post in there pretty much tells it all.

Shel90 is a member here, but I know that she is currently visiting family out of state, so it may be a few days before she posts. She, too, is a deaf mother of 2 hearing children, a teacher of the deaf, and was raised orally until she went to Gally to earn her Master's degree. It was there that she, too discovered ASL and Deaf Culture, and embarked on the journey you are starting. I see a lot of similarities in your stories, and I'm sure that she will be willing to share her struggles with you in order to provide some insight.

It is unfortunate, indeed, that CI is so often presented to candidates and their families in the way that you have described. The plain fact of the matter is, CI is a very useful assistive devise, but the person underneath the CI is still deaf, and there are psychosocial implications to that deafness the CI, or any assistive devise does not address. Unfortunately, neither do the doctors doing the implantation, nor the speech and language therapists, nor the audis. The result is people who can "function" in the hearing world, but do not feel connected to the hearing world, and have never had the opportunity to connect with Deaf Culture. People who feel caught betwixt and between. I find it incredibly sad that we are continuing to subject children to this in the name of assimmilating into the majority.

I look forward to getting to know you better. You obviously have both feet planted firmly on the floor, and are very self aware, with good motives. I'm anxious for Shel to start posting, as I know the two of you will connect mentally right from the start.

Thanks again, for being open enough to share so much of your story.
 
I'm sick of have hearing aids, it give me head shake all the time. I felt it's no point. Took it off and I'm complete silent world.
 
cterry7799 said:
HA never worked for me so i can't really say about that. I do understand about the importance of hearing memory with the ci though, and my best guess is that it mainly applies to the ci. With the c.i. I am not HEARING a sound so much as I am RECOGNIZING a sound. As a person that could hear previously, I do have a memory of sound(for example a dog barking). With the ci the sound is different then when I was hearing, but the memory of that sound aids in the speed of my recognition. I still have to learn to RECOGNIZE that particular sound sensation can be attributed to a dog barking, but because I know what a dog barking SOUNDS like, I can recognize it faster. The more I experience the c.i. sound sensation of a dog barking, and recognize it is a dog barking, the more it starts to SOUND like a dog barking. Like I said before, from experience with the c.i. I know that if I stop using it for a few hours or days or whatever and then turn it back on...what happens is that the sound is more distorted, i.e. more sounding like a robot/computer etc. lots of pips and squeaks, and not as quickly or easily RECOGNIZED. The longer it's been off, the longer the sound is distorted once it's back on. The more consistently you wear it the more quickly and easily the recognition happens and the SOUND is a lot more fluid and "natural." The memory of sound is important because the quick and consistent recognition by your brain makes the c.i. pips and squeaks into "sounds." It is really a use it or lose it deal. but I can only speak for myself and that is how I would describe it. The point that I got from the post about memory was that I could go many years without the ci being on, but I would not likely have to suffer through distorted pips and squeaks for longer than 6 months before I had SOUND again.
Click to expand...

I think I have learned something new today :) Thanks for the explaination. I was born deaf and "lifelong" HA wearer, so the issue with recoginze sound, and comparing it with how I know it really would sound is alien to me, but this makes sense. It must be other late deafened people that have experiences with breaks from CI, hope they make some posts here.
 
Hi there! This is Shel90 whom Jillo mentioned in her recent post. She is right...I grew up orally without exposure to ASL or other deaf people except for my best friend who was also oral too.

The expectations the hearing world put on me simply because I was able to lipread and use my speech skills were very unrealistic for me but I spent all of my childhood trying to meet their expectations. When I couldnt meet them, I blamed myself and started feeling negative about myself. I hated being deaf.

When I discovered ASL and the Deaf community, it was like a new door of opportunity to feel worthy again opened for me. No, my path in the Deaf world wasnt without its bumps but 10 years later, I am very much happy with myself as a deaf person. If I had never learned ASL or never found the deaf community, I would be just an empty shell of myself. Like u said...always standing behind the glass looking in. I had enough of it which is why I dont go back to the hearing world full time again.

I stopped wearing my HAs for 4 years out of anger and rebellion when I discovered how restrictive my upbringing was trying to be a "hearing" person but eventually I did miss the sounds and I realized that I still have to interact with hearing people so I started wearing them. Now, I keep a healthy balance between both worlds and it is just perfect. My husband is hearing and we use ASL some days and other days use spoken English. No biggie.

My dream is for all deaf and hoh children to be exposed to ASL and the Deaf community along with spoken language too. Why restrict them?

My 11 year old daughter is not fluent in ASL as I would liek to be. When she was born, I was just starting to learn ASL and I made the mistake of using my voice while signing to her therefore causing her to rely on spoken English heavily. My 2 year old son is very fluent in ASL...many people think he is deaf cuz he uses the appropriate ASL facial expressions. It is so cute. The reason he is fluent in both is because I kept both languages separate for him.

Your story is touching!
 
1 man who have CI. He had a headache by too much stress with kids and CI. He got re-surgery to fix his implant. He got better from headache. He is doing better so far. If you have an migraine. Do you think you could ask your doctor to repair your implants? It up to you. :)
 
I understand it should be decided on your own. I'd love to make a list of pros and cons but I am too much a ball of mixed up feelings to think that clearly. I was hoping to maybe find some other perspectives. Thanks for sharing...
 
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