Adjustment to late onset deafness

Thank you for sharing so honestly, Bear. I'm sure your story will have an impact on others.
 
Wow It was great to see your story, Bear!! It must be hard on late deafened people. I hope life is a bit better for you now with your implant!!
I feel you should have been given a lot more help!!
 
Bear said:
Jillio a very good and much needed thread.

I am latened deafened as well.

I was 14 years old the first time I lost my hearing * note here I said first time*. I went into complete withdrawal from society, when this happened. I stopped going to school, I stopped seeing my friends, I stopped even talking with my own mother. I felt like i was in a glass cage of sorts, looking out at the world and felt so isolated. All I would do is lie on the couch all day, reading books. This went on for about a year.

Then I got hearing aids!! Oh man what a change!!! I could *hear* again!! I couldnt have been happier. Although I did notice that I couldn't hear everything going on around me, just to be able to hear again was like winning the lottery. (Please don't bash, as Jillio is asking for experiences and this what I am giving). I came out of that glass cage, and started living life again. I still didnt like school so much because I couldnt hear enough in school.

Then I got into trouble for not going to school. So they sent me to the Ohio deaf school. I was so nervous about going there, because I knew NO signs at all. The courts had to fight to get me in, because naturally i wasn't *deaf enough*. Well after I got there, I was isolated and alone again, because of not knowing signs. I would ask for help over and over again from the other students to help me learn what those signs were. They would always tell me, "learn on your own". Luckily our dorm supervisor was hearing and she noticed the struggling I was doing. So she took me under her wing and would talk WHILE signing with me and taught me signs that way.

After the school year finished, man, I went home and just practiced and practiced and practiced signing. Then I went back the next year. And sad to say it didnt help much to be able to sign. While I made many friends throughout those three years of a deaf school, it was an uphill fight to gain acceptance.

Most of them had a problem with me, simply, because i could talk on a phone and not need the TTY. Or they would have a problem with me, because I could talk so well. Or they would have a problem with me simply because I fit into the hearing world. It was always something!! Now I realize it was the attitude of *not deaf enough* that i was mainly fighting. But Im happy to report that if you are willing to keep fighting, then you will find acceptance.

I found acceptance more now as a grown up than I did in high school though. Thank god for that.

Now moving on 20 some odd years later, suddenly, one day I woke up and the hearing aid wasnt working for me anymore. Luckily, it didn't hit me as hard as it did the first time. But let me tell ya, I did alot of WHY ME? And I typed that in caps, because it is hard to describe the anger and pain and the what the hell did I do to deserve this feelings.

What most d/Deaf doesn't understand. *Especially, those born deaf or very early deafened* is that when you lose something, regardless, of whether if it is a positive or a negative, you feel very angry and very much in pain.

I had to go the CI route just to be able to hear again. It wasn't something I decided to do overnight. In fact it took me 9 months after initially losing my hearing for the second time to even think about checking into it.

While Im not saying that hearing is superiour or the only way to go or whatever you may think. I am saying when someone loses a sense and they KNOW what having that sense is like, it is a very hard thing to deal with. Going without ANY sound at all was totally driving me nuts. It was very hard to handle. I am so used to some kind of sound that when it was silence, it was just something I couldnt handle.

A few things that I would like to say to someone newly deafened is:

1. Your life isn't over
2. You're not alone
3. Decide whatever is best for you and not what someone else says is best for you.
4. Never give up. Sometimes persistance is the key, especially to acceptance.


A few things I would like to say to someone that is meeting a newly deafened is:

1. Remember we have feelings too and do crave friendships and communications too.
2. Remember we have a right to feel for our losses. And yes to us it is a loss.
3. Help us to see that we are not alone and to find resources to improve our signs if we want to learn them.
4. Never give up with us, as someday we will too come to see the blessing that becoming deaf brought us.

Thanks for letting me post here and please do be kind when replying.
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Wonderful story! I wanted to thank you for the great point on being allowed to greive for our loss without being teased or worse. I can think of three or four Deaf people who need to have that idea stapled to the wall across their bed so they can be reminded every morning. And, you are right, given time, I think most of us will be able to be comfortable with ourselves as deaf people. But we need time, and that shouldn't be the issue it is to some people. What some born-deaf people don't get is that going deaf to us is a loss...like going blind (if they can see) would be to them.

Anyway, loved to read your story. It was great to know it!
 
November Gypsy said:
Wonderful story! I wanted to thank you for the great point on being allowed to greive for our loss without being teased or worse. I can think of three or four Deaf people who need to have that idea stapled to the wall across their bed so they can be reminded every morning. And, you are right, given time, I think most of us will be able to be comfortable with ourselves as deaf people. But we need time, and that shouldn't be the issue it is to some people. What some born-deaf people don't get is that going deaf to us is a loss...like going blind (if they can see) would be to them.

Anyway, loved to read your story. It was great to know it!
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:hmm: :dunno:
 
Agreed. One of the main purposes of this thread was to allow those who are late deafened to grieve for the loss of their hearing in a place that is safe and free from judgement by either the Deaf or the hearing.

Those who have lost their hearing later in life most certainly go through a grief process for their loss. Unless they are allowed to go through that process, and come out on the other side, they are blocked from ever reaching the point where the hearing loss is not such a huge factor in their life. I would love to see all late deafened people be able to reach the same level of acceptance and adaptability that I see in those that have been born deaf. Why would I like to see that? Because it will improve their lives significantly. If permitted to complete the grieving process, and have their questions answered in a non-judgemental way, they, too, will be able to see their hearing loss not so much as something that is missing in their life, but as something that is simply a part of their life, and something that, while creating a change, can also be a very positive change. The shift needs to be from viewing hearing loss not so much as something one no longer has, but as something that also provides an opportunity for personal growth and greater understanding.

While someone who is born deaf does not go through this grief process, simply because that is the way things have always been and they have not lost something they never had, when that child of hearing parents is born deaf, the parents go through the same sort of grief process. Some complete that process and come out on the other side better parents and better able to support their children. Others struggle against it their entire lives, and it consumes them. They become so caught up in how to lessen the degree of hearing loss that it governs the very way they relate to their children. This blocks both parent and child from developing the closeness and acceptance one should be able to expect from a parent/child relationship. They never reach the point of acceptance that allows them to say, "Okay my child is deaf. Nothing I can do to change that. Now, how do I incorporate that fact into my life, and my family's life, and my child's life so that it becomes a positive?"

Late deafened people need to reach that same level of acceptance regarding their own deafness. It isn't something that happens overnight. It takes time, it takes conscious effort, and it is quite often a painful process. I see the same emotional reactions in those who are late deafened as I see in hearing parents of deaf children. And, if those patterns are not allowed to fall away by going through the grief process, they have a negative impact not just on the individual, but on everyone around that individual.

I firmly believe that the key to adjusting to late deafness is not, "How do we get family members to accept this change and help me deal with it?" but rather "how do I, on a very personal level, accept this change and deal with it." Others in our lives will base their reactions on how we, as individuals, react. If we fight against it on an emotional level, they too will fight against no matter how often we tell them that we need a different reaction from them. If we incorporate it into our lives, and simply accept it as the way it is, and move forward from there, they too will accept it and adjust to the circumstances.

We cannot demand that others change to suit our needs. What we can do is change to suit our own needs. Those that love us will follow that example. It may take time, as they have their own struggle with change to deal with. By the same token, how we feel about our own circumstances and indentity will govern how others feel about our circumstances and our identity. Change begins with self. Work on that, and it will amaze you how it bleeds out into the world and the people around us.
 
jillio said:
It seems that we have several members that are currently going through adjustments to late onset deafness. I suggested a support type group through AD, and offered to facillitate. I received word from a mod that we could go ahead and start a thread on this topic. So...here it is.

How about if we start off by having participants offer a brief introduction of themselves, and the issue they are currently struggling with?

Oh, and mods...could you sticky this please?
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I use to be a health aide and some of my clients family worried about their love ones losing their balance. I sugguested they have their hearing check
as this can affect your balance. And a lot of clients did not wearing their new hearing aide as had the really little one that fit right the ear . It was too hard to use or they had trouble getting use to hearing new sounds.
 
jillio said:
I firmly believe that the key to adjusting to late deafness is not, "How do we get family members to accept this change and help me deal with it?" but rather "how do I, on a very personal level, accept this change and deal with it." Others in our lives will base their reactions on how we, as individuals, react. If we fight against it on an emotional level, they too will fight against no matter how often we tell them that we need a different reaction from them. If we incorporate it into our lives, and simply accept it as the way it is, and move forward from there, they too will accept it and adjust to the circumstances.

We cannot demand that others change to suit our needs. What we can do is change to suit our own needs. Those that love us will follow that example. It may take time, as they have their own struggle with change to deal with. By the same token, how we feel about our own circumstances and identity will govern how others feel about our circumstances and our identity. Change begins with self. Work on that, and it will amaze you how it bleeds out into the world and the people around us.
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The bolded lines seem most important to me.
 
"What most d/Deaf doesn't understand. *Especially, those born deaf or very early deafened* is that when you lose something, regardless, of whether if it is a positive or a negative, you feel very angry and very much in pain."

I disagree with this! I was born HOH and did not get my first hearing aide till I was 7 years old. I lost 7 years of my childhood. I can understand what it like for a person to lose their hearing later in their life.
I do not understand why deaf people are so prejudice to people that are HOH!
 
whatdidyousay! said:
"What most d/Deaf doesn't understand. *Especially, those born deaf or very early deafened* is that when you lose something, regardless, of whether if it is a positive or a negative, you feel very angry and very much in pain."

I disagree with this! I was born HOH and did not get my first hearing aide till I was 7 years old. I lost 7 years of my childhood. I can understand what it like for a person to lose their hearing later in their life.
I do not understand why deaf people are so prejudice to people that are HOH!
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I don't think it is so much a pattern of the Deaf being inconsiderate or intolerant. Their experience with deafness is just different from someone who lost their hearing later. They have difficulty relating to that. Just as someone who is late deafened has difficulty understanding the experience of someone who is born deaf. Very often, it has nothing to do with whether one has been born deaf, or one who has lost their hearing later, but with the way the one who has lost their hearing presents themselves to the rest of the world. If they perceive themselves as less than a complete and capable person simply because they have lost hearing, then they will be treated as such...not just by those born deaf, but by anyone they attempt to relate to.
 
take what you wish, just sharing:

:ty: I have enjoyed and learn from all these postings about late-deafened....for those who are reading new, I have a just-confirmed hearing loss. I joined AD some months before this was confirmed. I actually am not too surprised because I was a preemie, and have LD, so this just something else that could be a challenge but that I will learn from. I have been thinking, what could I gain from this, how can I incorporate it, especially when it affects my teaching of dog training classes. I much appreciate my hubby who is HOH, considers oral deaf without HA's. I do not know where on this journey we will go, but he really touched me when he asked me if - when communicating between us -it was between writing things down, and ASL <as I said, he is very oral, as well as very linear, very logistic-minded, sequential, analytical, extremely talkative and outgoing - total opposite of me >, what would I prefer to use depending on what happens, I said - ASL, not writing back and forth. He said he would learn ASL <amazing if you know him> for me.....I was very touched -
 
Sorry folks, this will be long :)

This semester I had a sudden sensorineural hearing loss -- sloping curve down to a moderately severe/severe loss in the high frequencies on the right side. They're still trying to figure out why.

I had an upper respiratory infection, which spread to my ear. Nasty vertigo, balance problems, and feeling it full as a balloon for a couple of weeks. I've had sinus problems since I was a kid, and sometimes that means temporary conductive loss. This was clearly different. Several tests later, my neurotologist says it's early Meniere's. It could have been caused by the infection, but there's signs that it might be autoimmune.

I'll feel better when the medical stuff is ironed out. I'll know what to expect and can plan more. I'm in the first year of grad school, in anthropology. I need to figure out what this means for fieldwork. The balance stuff and dizziness has improved, but it's still a problem. I'm having trouble in public conversations in English, which is my native language. I'm REALLY struggling in my field language, because I don't have as much context and it's harder to guess what people are saying.

I've dealt with conductive stuff for years, but this is different and frightening. At first it was very hard to go out, partly because of the balance issues. (I'm not falling down, but it often feels like I am.) And loud noises, especially high-pitched ones, were really bad -- painful, and sometimes they actually made me nauseous. That's calmed down. Thank goodness, because I live in New York City and it's LOUD here! It's still weird to not know where things are. The number of times I've almost been hit by a car or bike I didn't hear coming! That and people coming up behind me on the street. I _make_ myself go out, and I'm starting to get used to it.

In some ways I'm very lucky. I have a dear friend, T, who is HOH/late deafened adult. T has been through a lot of this, and assures me that being disoriented at first is normal. And that I can get used to it and live my life! Before any of this happened, we'd decided to go to an ASL class together. We're doing that now. He needed it to get by; I wanted to take it to talk with him and with my family. Which is another can of worms.

My aunt and her partner are Deaf from infancy. When my aunt was diagnosed, the doctor was adamantly anti-sign. It was the mid-1950s. My grandparents were told that they should never, ever sign or allow her to sign. They sent my aunt to an oralist school. She learned to sign from the other kids -- which was actually pretty damn impressive, because they weren't allowed to sign at school either! They had to sneak it in! :shock: My cousin, her daughter, is hearing and ASL/English bilingual. But even in the 70s and 80s the rest of my family swallowed oralism whole. My Mom and Dad got on my case as a kid for learning to _fingerspell_! I finally decided that this has gone on WAY too long and that I need to learn ASL. My sister did too, but the program where she lives teaches PSE, not ASL, so she eventually gave up. My Mom is lightening up now that my cousin has kids and is teaching them to sign. But Mom's still kind of "You're losing your hearing? It's the end of the world!" No, it's not. It's a setback, not a tragedy.

Thank God I know other HOH and Deaf people, and have known since I was a kid that there are plenty of options even if I lost all of my hearing tomorrow. I can't imagine how lonely and frightened someone in my shoes would be if they'd never even heard of TTYs, for example. Or if they'd never met a Deaf/HOH person who was living an ordinary life the way most of us do!
 
jillio said:
Agreed. One of the main purposes of this thread was to allow those who are late deafened to grieve for the loss of their hearing in a place that is safe and free from judgement by either the Deaf or the hearing.

Those who have lost their hearing later in life most certainly go through a grief process for their loss. Unless they are allowed to go through that process, and come out on the other side, they are blocked from ever reaching the point where the hearing loss is not such a huge factor in their life. I would love to see all late deafened people be able to reach the same level of acceptance and adaptability that I see in those that have been born deaf. Why would I like to see that? Because it will improve their lives significantly. If permitted to complete the grieving process, and have their questions answered in a non-judgemental way, they, too, will be able to see their hearing loss not so much as something that is missing in their life, but as something that is simply a part of their life, and something that, while creating a change, can also be a very positive change. The shift needs to be from viewing hearing loss not so much as something one no longer has, but as something that also provides an opportunity for personal growth and greater understanding.

While someone who is born deaf does not go through this grief process, simply because that is the way things have always been and they have not lost something they never had, when that child of hearing parents is born deaf, the parents go through the same sort of grief process. Some complete that process and come out on the other side better parents and better able to support their children. Others struggle against it their entire lives, and it consumes them. They become so caught up in how to lessen the degree of hearing loss that it governs the very way they relate to their children. This blocks both parent and child from developing the closeness and acceptance one should be able to expect from a parent/child relationship. They never reach the point of acceptance that allows them to say, "Okay my child is deaf. Nothing I can do to change that. Now, how do I incorporate that fact into my life, and my family's life, and my child's life so that it becomes a positive?"

Late deafened people need to reach that same level of acceptance regarding their own deafness. It isn't something that happens overnight. It takes time, it takes conscious effort, and it is quite often a painful process. I see the same emotional reactions in those who are late deafened as I see in hearing parents of deaf children. And, if those patterns are not allowed to fall away by going through the grief process, they have a negative impact not just on the individual, but on everyone around that individual.

I firmly believe that the key to adjusting to late deafness is not, "How do we get family members to accept this change and help me deal with it?" but rather "how do I, on a very personal level, accept this change and deal with it." Others in our lives will base their reactions on how we, as individuals, react. If we fight against it on an emotional level, they too will fight against no matter how often we tell them that we need a different reaction from them. If we incorporate it into our lives, and simply accept it as the way it is, and move forward from there, they too will accept it and adjust to the circumstances.
We cannot demand that others change to suit our needs. What we can do is change to suit our own needs. Those that love us will follow that example. It may take time, as they have their own struggle with change to deal with. By the same token, how we feel about our own circumstances and indentity will govern how others feel about our circumstances and our identity. Change begins with self. Work on that, and it will amaze you how it bleeds out into the world and the people around us.
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You make some really excellent points, and I agree with you for the most part. However, I would like to say that I don't think everyone will base their behavior towards other people on how those people feel about themselves. A lot of people do, of course, maybe even the majority. But I have personally been aquainted with two particular persons who make it their mission in life to degrade and antagonize others, dispite how those people react. They don't treat people who feel good about themselves better then they treat people who don't feel good about themselves, if you see what I mean. For example, I am beginning the process of acceptance and, for the most part, I'm getting more comfortable with my deafness...it's still a process, but it's progress. One of these people I'm talking about goes out of their way to make try to make me feel badly about myself and the fact that I am not one hundred percent comfortable all the time with my hearing loss. I am beyond the point of caring what that person thinks, so it doesn't touch me like it would have, say, six months ago. But, the fact is, even when I do become completely adjusted (a thing that I believe will happen) he will find something else to be a jerk about. I know this to be a fact. You are right, we are responsible to a certain degree about how we see ourselves...but I don't think it's fair to totally exonerte the people who refuse to be resonable just because not everyone thinks of themselves in a positive light. That seems like letting a lot of bullies off the hook. That's what some of these people who refuse to let others have feelings they don't have are. Bullies. Bullying happens because the bullies are unhappy, I get that, but that doesn't mean they should be entirely excused. I am not saying that pity and understanding isn't key here, but educating ignorance and lessening undeserved cruelty by letting them know what they are doing wrong and how to fix it must happen as well. I understand that people born deaf haven't had to grieve in the same way we have to, but that doesn't mean that they shouldn't have to excerise basic manners and basic humanity towards people who are feeling grief over their hearing. Even if they are thinking 'boy, what a whiner, I've been deaf my whole life, it's not something to be upset about'...I don't think they have the right to torture people who are already shaken by such a radical change of life style. Obviously, not everyone gets it. But everyone can choose to keep their tongues to themselves when they want to be unkind...am I making sense at all?

By the way, most of the deaf people I have been meeting at least allow others to grieve, even if they don't entirely get it. The people I am talking about are, thankfully, the minority, at least in my personal experience.
 
November Gypsy said:
You make some really excellent points, and I agree with you for the most part. However, I would like to say that I don't think everyone will base their behavior towards other people on how those people feel about themselves. A lot of people do, of course, maybe even the majority. But I have personally been aquainted with two particular persons who make it their mission in life to degrade and antagonize others, dispite how those people react. They don't treat people who feel good about themselves better then they treat people who don't feel good about themselves, if you see what I mean. For example, I am beginning the process of acceptance and, for the most part, I'm getting more comfortable with my deafness...it's still a process, but it's progress. One of these people I'm talking about goes out of their way to make try to make me feel badly about myself and the fact that I am not one hundred percent comfortable all the time with my hearing loss. I am beyond the point of caring what that person thinks, so it doesn't touch me like it would have, say, six months ago. But, the fact is, even when I do become completely adjusted (a thing that I believe will happen) he will find something else to be a jerk about. I know this to be a fact. You are right, we are responsible to a certain degree about how we see ourselves...but I don't think it's fair to totally exonerte the people who refuse to be resonable just because not everyone thinks of themselves in a positive light. That seems like letting a lot of bullies off the hook. That's what some of these people who refuse to let others have feelings they don't have are. Bullies. Bullying happens because the bullies are unhappy, I get that, but that doesn't mean they should be entirely excused. I am not saying that pity and understanding isn't key here, but educating ignorance and lessening undeserved cruelty by letting them know what they are doing wrong and how to fix it must happen as well. I understand that people born deaf haven't had to grieve in the same way we have to, but that doesn't mean that they shouldn't have to excerise basic manners and basic humanity towards people who are feeling grief over their hearing. Even if they are thinking 'boy, what a whiner, I've been deaf my whole life, it's not something to be upset about'...I don't think they have the right to torture people who are already shaken by such a radical change of life style. Obviously, not everyone gets it. But everyone can choose to keep their tongues to themselves when they want to be unkind...am I making sense at all?
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I understand what you are saying. Unfortunately, there are these type of people in the world. However, their behavior has absolutely nothing to do with you, but is the result of their own problems with their self esteem and identity. The only way they can feel good about themselves is to make someone else feel worse. In the case of that type of person, my recommendation is to tell them in no uncertain terms that you care about them as a person, but that you cannot allow them to project their problems onto you any longer. You set boundaries, and you stick by them. No one has the right to purposely attempt to make you feel bad about yourself, no matter what their motive is. And you have every right to put an end to the negative influence they have on you. Setting boundaries in this way goes right back to acceptance of who you are and the fact that, even without your hearing, you are just as valuable and just as deserving as anyone else. Keep telling yourself that, and the strength to set boundaries will come.
 
November Gypsy said:
Words of wisdom, as usual. Now, if I can just consistantly put them into practice, we'll be set. *Smiles*
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It would appear to me that you are very consistent. My words to you just keep changing because you are making such wonderful progress!
 
Thanks again! I'm glad I've given such a good impression. Honestly, I'm very much still working through all of this, but I am doing better then I was! Thanks to you and many others on here.
 
I am getting two BTE's for my hearing loss. What drives me nuts is all the silly things people OUTSIDE the Community think about those who are INSIDE the Community. I identify as "HOH" and am starting to be accepted by the Community. But I still like to do "Hearing" things like sing in a choir or even play a flute. People can't seem to fathom that a HOH could do these things.

defgrl
 
BTW, I think this is an AWESOME thread. It does seem like most of the regulars here have always been dhh. This will be usefull for the late deafened to find support etc.
BTW for those of you who are late deafened, ALDA and HLAA are both good orgs that have a lot of late deaf people.
 
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