Adjustment to late onset deafness

[November Gypsy]

Welcome back parades. It's true. Jillio's well loved here. I really hope they come up with something more permanent for this issue. It's just not the same as being deaf or hoh since you were born or since you were a very young child. That's just extremely obvious. I mean, it's this whole new culture, this whole new life that you have to adjust to... It's not a bad life, in fact, it can be just as great as any other, but it is NOT easy to adjust.

 

[jillio]

Jillio... Many, many, Latent deafies came here. Just have to help redirect them to the "appropriate thread"

I'll be on the out look for them!

 

[jillio]

Welcome back parades. It's true. Jillio's well loved here. I really hope they come up with something more permanent for this issue. It's just not the same as being deaf or hoh since you were born or since you were a very young child. That's just extremely obvious. I mean, it's this whole new culture, this whole new life that you have to adjust to... It's not a bad life, in fact, it can be just as great as any other, but it is NOT easy to adjust.

Thank you, November Gypsy. And you are correct...it is not easy to adjust. As humans, we naturally dislike change. And becoming late deafened is a huge change in your life. It is necessary to grieve for what was (your hearing) in order to accept, and become comfortable with, what is (your deafness). And not only does the late deafened person had to adjust to this change, the people closest to them are going through their own changes. All too often, this makes the deaf individual feel as if they must always act as if everything is okay in order to make it easier on family members. But everything isn't okay. It is a big adjustment to make, and you should not have to hide your feelings of loss and frustration in order to make it easier on others. That is why I feel it is important for late deafened adults to have a place to vent those feelings, discuss alternatives, and talk about the changes without fear of making anyone uncomfortable or fear of being judged.

 

[November Gypsy]

You know what? I honestly think you are brilliant. You are absolutely correct. I feel so much of time like I have to be all cheery about the fact that I just plain can't hear even half of what I did. What's worse is when people born deaf berate you for feeling bad. I don't think anyone should wallow in self pity...but I don't understand why it's so hard for others to give late-deafened people time to grieve (talking about people in general). Anyway, I'm so glad I found this forum. It's so supportive in so many ways. I just recently started making contacts with the deaf community in my area. I'm excited but so nervous! You all give me courage that it will be alright, in fact, better then alright!

 

[jillio]

You know what? I honestly think you are brilliant. You are absolutely correct. I feel so much of time like I have to be all cheery about the fact that I just plain can't hear even half of what I did. What's worse is when people born deaf berate you for feeling bad. I don't think anyone should wallow in self pity...but I don't understand why it's so hard for others to give late-deafened people time to grieve (talking about people in general). Anyway, I'm so glad I found this forum. It's so supportive in so many ways. I just recently started making contacts with the deaf community in my area. I'm excited but so nervous! You all give me courage that it will be alright, in fact, better then alright!

Naw...I'm not brilliant...just old with a lot of life experience, lol!

No, of course no one needs to wallow in self pity. You are very right about that. But at the same time, they need the time and the space to go through the stages of adjustment. At first, self pity is a normal and expected reaction. The point is to move beyond that, and the best way to move ahead is to work through where you are in an understanding environment.

 

[Babyblue]

Naw...I'm not brilliant...just old with a lot of life experience, lol!

No, of course no one needs to wallow in self pity. You are very right about that. But at the same time, they need the time and the space to go through the stages of adjustment. At first, self pity is a normal and expected reaction. The point is to move beyond that, and the best way to move ahead is to work through where you are in an understanding environment.

Even now... Being deaf from birth, wearing HA since 4. I find myself wondering.


This is speaking for myself as a HOH person only.


But since I do have some hearing, and understanding of speech.

And the expectations of others, since I can hear and speak.

It gets frustrating as well.

I do wonder at times.

What do they think.. I can not truly say it does not bother me. (I do brush it off) but it does. Human nature.

I think if others are as honest, as I am being right now.. would say the same.


It is not how they think of me as a person. I know they love me, and care for me. I do understand that.

It is the thought of me being a burden to them at times.

 

[November Gypsy]

I understand what you are saying...but I also know that if the people you are talking about really love you, they would tell you if they felt burdened by you in someway....and I don't think they would find you as a person a burden, but rather, just some aspect of your behavior. I don't think they do. My husband tells me when he gets fustrated with my hohness....but he also supports and encourages me all the time! I wish I could give you a big ol' bear hug. I promise you are not a burden to those who really matter.

 

[jillio]

Even now... Being deaf from birth, wearing HA since 4. I find myself wondering.


This is speaking for myself as a HOH person only.


But since I do have some hearing, and understanding of speech.

And the expectations of others, since I can hear and speak.

It gets frustrating as well.

I do wonder at times.

What do they think.. I can not truly say it does not bother me. (I do brush it off) but it does. Human nature.

I think if others are as honest, as I am being right now.. would say the same.


It is not how they think of me as a person. I know they love me, and care for me. I do understand that.

It is the thought of me being a burden to them at times.

I think it is natural to wonder sometimes, particularly perhaps after a frustrating day when you have had to ask others to repeat themselves constantly, or someone has made one of those ridiulous assumptions about being able to speak well, so you must be faking the level of your hearing loss, etc. Because, in these situations, you have to make more effort at communication, it is natural to see the difficulties more than anything else. That becomes internalized, and you "feel" like you are responsible for inconveniencing other people. When that bumps up against the natural desire to make our loved ones happy, and their lives stress free, we get internal conflict. I would ask you to keep in mind the fact that very, very often our feelings have absolutely nothing to do with reality. That holds true for all of us in all situations. Just because you may "feel" that your deafness could be a burden to others doesn't necessary mean that they feel that way, too. More likely than not, your loved ones would tell you honestly that there are times that it can be frustrating, but that their frustration comes more from their inability to communicate with you effectively more than from your deafness. They have the same desire to make you happy as you do for them. Therefore, they will also experience frustration with the situation, but their frustration comes from them, in the same way that your frustration comes from you. My suggestion would be to talk about it. If you are having difficulty on a particular day, and it involves say, a situation with your husband, simply tell him, "I feel like such a burden to you sometimes." I think you will be surprised by his response.

 

[Babyblue]

I think it is natural to wonder sometimes, particularly perhaps after a frustrating day when you have had to ask others to repeat themselves constantly, or someone has made one of those ridiulous assumptions about being able to speak well, so you must be faking the level of your hearing loss, etc. Because, in these situations, you have to make more effort at communication, it is natural to see the difficulties more than anything else. That becomes internalized, and you "feel" like you are responsible for inconveniencing other people. When that bumps up against the natural desire to make our loved ones happy, and their lives stress free, we get internal conflict. I would ask you to keep in mind the fact that very, very often our feelings have absolutely nothing to do with reality. That holds true for all of us in all situations. Just because you may "feel" that your deafness could be a burden to others doesn't necessary mean that they feel that way, too. More likely than not, your loved ones would tell you honestly that there are times that it can be frustrating, but that their frustration comes more from their inability to communicate with you effectively more than from your deafness. They have the same desire to make you happy as you do for them. Therefore, they will also experience frustration with the situation, but their frustration comes from them, in the same way that your frustration comes from you. My suggestion would be to talk about it. If you are having difficulty on a particular day, and it involves say, a situation with your husband, simply tell him, "I feel like such a burden to you sometimes." I think you will be surprised by his response.

I do wonder at times. And you are right. It is usually during a stressful day. Especially when I go to family outings. With a lot of people talking at once.
And keep having them to repeat themselves or to interrupt them to ask them to slow down. Etc.

 

[shel90]

Some of you know my story from previous posts, but for those who don't, here's my tale. I had a mild hearing loss that was diagnosed in college, nearly 30 years ago. Out of curiosity I took a college class in ASL and really enjoyed it. My hearing was stable for decades, until 9 months ago. I awoke one morning with moderately severe hearing loss, which progressed over 4 months to profound deafness. I use hearing aids but only for sound awareness, and have taken crash courses in ASL. I rely on an interpreter to continue working, use CART for lectures, and use a videophone or internet relay for telecommunication. I have very loud and bothersome tinnitus.

Shortly after I became Deaf my audiologist told me about ALDA, the Association of Late Deafened Adults, and I attended my first conference last fall. It was communication heaven, and an incredible opportunity to talk with dozens of people whose story was similar to mine.

I think for me there are several frustrating issues in becoming late-deafened. A big one is safety. I have a service dog (I am also quadriplegic), and while he's not a very good hearing dog, he definitely alerts to environmental sounds. At night as a female living alone, I find that I become easily frightened when he alerts. I have a security system but I fear that if someone breaks in, I have no way of knowing or of defending myself.

Another issue is with interpersonal interactions. I am frustrated that people may think I'm rude, aloof or ignoring them when I don't hear them, or when I can't lipread them well. I am also frustrated by the people who don't take the time or effort to communicate.

I am fortunate in having a wonderful support network at home and at work. Most of my office staff are learning ASL, and my family has quickly mastered texting and VP. I also think I have an advantage, having already experienced the loss of mobility from my spinal cord injury 22 years ago. I know the stages of grief, and recognize that there is life on the other side of "disability". There are still times, though, when I mourn the loss of music and easy communication.

Doug, please don't give up on your dream. Being a Geneticist is a readily achievable goal, with a lot of work and good support from your medical school. There is a need for more Deaf medical professionals, and already being a nurse gives you a tremendous advantage. Go for it!

Wow!

 

[shel90]

Well I guess its my turn sorry if it turns into a book, but i know you all like to read...

Last summer around July/August I had noticed that I was having some dizziness and what seemed to be a sudden loss of hearing that fluctuated from time to time. At first I really didn't think much about it, I just thought it was something that came and then would go. The last couple of weeks in August though I started getting really bad Tinnitus. It wasn't just a small ringing sound it was loud and it was so bad I couldn't sleep. During the day I was scared to drive and do my normal every day things because I couldn't balance right, my head would hurt, my hearing would go away then come back, go away then come back.
Scared out of my mind I went to the ER, I thought something was wrong with my head. They ran a number of tests, blood tests a CT. When they found nothing wrong with that stuff they ordered an MRI the following day. I went in for it and go the results back in a couple days. They called me and told me they didn't find anything tumors or anything of the sort that would explain what was going on. I asked if maybe it was related to Diabetes because it runs in my family but the doctor assured me it wasn't because they checked for that.
I was very frustrated and because my hearing was an issue I called a place to have a hearing test done. The place I had called had told me it was about a month till they could get me in for a test. I took the appointment (even though I thought it was rediculous to wait that long.) A few days had gone by and the symptoms seemed to lesson except the Tinnitus. It was driving me nuts because it was constant and it just never seemed to go away. It was like I had a whole lot of crickets chirping at night in my head all of the time.
Frantic in the morning I called my mother crying she told me to find another place that could take me. The first place I called I was in tears I'm surprised the lady could hear me. I told her what was wrong and she said they could get me in for a test within the next hour. She was appalled that the other place was going to take so long.
The Audiologist I went to see is Bill, it was his own practice and his wife Wendy was his secretary. When I came in, they both made me feel so at home. I was nervous of course but he brought me into the office and had me sit down while he took all my history down.
We started all of the tests, first he checked everything out in my ears, he said they were pretty red inside, more than he liked to see. Then he did a measurement of some sort I think it had to do with fluid in the middle ear? I really didn't understand a lot of what he was saying to me. Then came the hearing tests. Say ice cream, say ball, say sidewalk.. (i know you all know how it goes, lol) I missed a few words and repeated a few back that weren't right. And while he did the tone tests it was also hard because of the Tinnitus. The sounds were the same sounds I was hearing all of the time so it made it hard.
We finished the tests and he took a few minutes to go over everything. I knew I hadnt done very well =( He then came back and said I had a moderate-severe loss and sat me down to show me the results of the audiogram. He showed me where my hearing was, what normal was, and how much loss I had, and how much I still had left. The tears started to flow and it was hard for me to take in. It was more hard because I knew something was wrong I just didn't know what. Then he also said he wanted me to see an ENT because of the fluid test and something else, I don't remember what it was right now. So he referred me to an ENT at the University hospitals. He did tell me he recommended Hearing Instruments for both ears and took me to the other side of his office. He showed me many models and brands and showed me ones he could put on me that day.
Because my hearing was moderate-severe he handed me a small BTE aid and asked me what I thought of it. I said it was small and it looked nice. He got 2 of them and hooked them up to the computer where he started to program my audiogram into them. A little while later he put them on me and we started to tweek things. I will tell you I cried 2 times that day. Once when I knew how much hearing I had lost and once he put those on me. It was brought to my attention that my hearing had been bad before i thought i was losing my hearing as well. I was hearing so many things I hadn't heard in so long. I heard a radio he had on the whole time in his office i didn't know was on!

That was about 7 mths ago. Since then I had seen the ENT we did the tests and I have been Diagnosed with Menieres Disease in both ears. My hearing has also dropped a number of decibels since. The latest drop was in my right ear in January, 5 decibels just in that month. I have had to have an upgrade in the receiver in both aids so that the gain is greater.
This has been a very painful thing for me to deal with. While I put on a smile every day and I try to make the best of it my friends and family just do not understand what I am going through. I feel like I am caught in Limbo. The world of hearing people is no longer the same. A world where I felt comfortable starting up a conversation with a group of people, laughing and joking around with my friends and family. A world that has turned into one I can no longer understand to the best of my ability. One where no one understands me...
Trying to slowly transition my life into the Deaf community. A community that doesn't fully understand what it is like to become Deaf after having hearing your whole life.
Its a double edged sword that is hard to swallow any way you look at it.
I enjoy music more than anything in my life and knowing that some day I will not be able to hear it breaks my heart. It sounds weird but some days I wake up hoping that all of my hearing is just gone so I don't have to go through all of this hard stuff. People think because I have Hearing aids that I hear everything. And when I miss something they think I can just turn them up and all will be okay.

When I learned of my disease I enrolled into ASL and have enjoyed every minute of it as I have always thought it was a beautiful language.

Some days I can stand my life and others its tough. I am just glad I have a place like AD to come to.. I feel very blessed to have met the people I have met and the ones I continue to meet in this journey...

Your story bring tears to my eyes...It can only get better from there, I hope!

 

[shel90]

Hi candy. Your experience is similar to mine. But you're still lucky because everything that happened to you was not so suddent. I was HOH since 8 years old, so i only hear with my left ear. Untill 3 years ago, one night, i had a great fever. My hearing turned down slowly, with many ringing and buzzing noises in mid ear, just like what happened to you. And i was totally deaf in the morning, untill now.
I don't enjoy it, but i can't regret it either. But not like the others who learn ASL so quickly, I prefer learn "MOUTH" first. That's because when i was still "half" normal, HOH, i learn people's talk trough "MOUTH" too. Even i used to watch TV on mute.
Yes, i like to learn ASL too, but in my country, it's not easy to find place/community that teachs ASL. If they are, they asked me to pay just to learn ASL, which the amount is not suitable for me. So, here i am. Joining this community, with hopes i can learn ASL better manually.

Bydway, i suggest u to try the accupunture method. It's very useful and no pain. It doesn't cost u much too. because accupunture relates to neuro system, things that broken on us. I've tried it, and it gave me progress.

So, that's my suggestion, and hopes we can make friend. Take care !

Is there a Deaf community in your country? Maybe they dont use ASL but a different sign language?

 

[shel90]

It is the thought of me being a burden to them at times.

I used to feel that way all the time before I learned ASL and got involved with the Deaf community. I could see thru my friends' facial expressions that I was being a burden on them whenever I asked them what was everyone saying and etc. It got to the point where I just stopped asking and became a wall flower refusing to call attention to myself.

 

[DylanTheDEAFKid]

I'm 18 now and got aided when I was 17. I noticed the world was becoming quiet freshman year of high school when I was 15. The cause of my hearing loss is scar tissue in my middle ear that progressed to the inner ear. Now my right ear is pretty much useless and my left ear has 15%. When I meet new people, a lot of them are kind of shocked when I tell them I am deaf. They say things like "What? Really? No way. You speak so well." I simply tell them, i was not born deaf. And then their next reaction is always the same with everybody. "Oh, I'm sorry." And my reply is always the same. "Why? Yes I am deaf, but I am alive. I can't hear, but I can breath." It took me about a year to make my peace with myself and my hearing. At 15, my doctor told me that the risk of me becoming deaf are very high. Was I afraid at first? Yes. Was I angry or sad? Yes. I grew up with music in my life and this was simply a knock in the gut for me. But I I heard the words I needed to hear from my hero, OZZY! "If you have a dream, don't ever stop dreaming it." That was all I needed to hear. I knew from then on that there was nothing I couldn't do. Well, except hear. But anyway, I made my peace with it and now, it really doesn't bother me.

 

[jillio]

You have a wonderful, healthy attitude toward your deafness, Dylan.

 

[November Gypsy]

It's amazing, as I think I've said before, how we humans were made to change and thrive in any kind of situation. We all get scared when such big changes happen to us...I think it's remarkable how many of us go on, grow, and become better people because of it, rather then inspite of it. I'm in a positive mood about it today. I discovered that it's very easy to turn off my hearing aids while my mother (here for a visit) gets stressful at me. I love my mother but she has a lot of tense energy, and I think I only avoided a panic attack because I was completely able to 'turn her off' (she wasn't talking to me, but rather, about me...so it wasn't rude of me, I hope. Makes me very unhappy to be talked about like I'm not there, but she's done it all my life and probably will continue until she dies.

 

[jillio]

It's amazing, as I think I've said before, how we humans were made to change and thrive in any kind of situation. We all get scared when such big changes happen to us...I think it's remarkable how many of us go on, grow, and become better people because of it, rather then inspite of it. I'm in a positive mood about it today. I discovered that it's very easy to turn off my hearing aids while my mother (here for a visit) gets stressful at me. I love my mother but she has a lot of tense energy, and I think I only avoided a panic attack because I was completely able to 'turn her off' (she wasn't talking to me, but rather, about me...so it wasn't rude of me, I hope. Makes me very unhappy to be talked about like I'm not there, but she's done it all my life and probably will continue until she dies.

LOL! You have learned to do what my son learned to do at the age of 2 when he didn't want to pay attention. He would not only turn his aids off, he would close his eyes so he didn't have to see my sign!

 

[November Gypsy]

LOL! You have learned to do what my son learned to do at the age of 2 when he didn't want to pay attention. He would not only turn his aids off, he would close his eyes so he didn't have to see my sign!

*Grin* I had a suspicion it was a little childish....but sometimes, you just have to do what you have to do. I haven't had a panic attack in some two years, since I left my mother's house, in fact. I didn't want to have one again, period, and I especially didn't want my baby (who was right there as we are only very rarely seprated) to witness one. Like I said, I love my mother. But she is, sadly, not a very comfortable person for me. I am sure that I have been a very difficult child...but anyway...not what this threads about. She just kept going on about how she 'couldn't believe I was going deaf, that I wasn't trying hard enough, that the doctors weren't trying hard enough, that I was using my ha's as crutchs....' you get the pictures. Sigh. Double sigh.

 

[jillio]

*Grin* I had a suspicion it was a little childish....but sometimes, you just have to do what you have to do. I haven't had a panic attack in some two years, since I left my mother's house, in fact. I didn't want to have one again, period, and I especially didn't want my baby (who was right there as we are only very rarely seprated) to witness one. Like I said, I love my mother. But she is, sadly, not a very comfortable person for me. I am sure that I have been a very difficult child...but anyway...not what this threads about. She just kept going on about how she 'couldn't believe I was going deaf, that I wasn't trying hard enough, that the doctors weren't trying hard enough, that I was using my ha's as crutchs....' you get the pictures. Sigh. Double sigh.

It is very sad that your mother has to find someone to blame (you, the doctors, etc.) instead of just accepting that this is just one of those hurdles life sometimes asks you to jump, and that everyone needs to work together to get over it. Not only does your mother make you uncomfortable, it sounds to me as if she is not very comfortable with herself, either. Usually when people are looking for someone else to blame, it is because they don't want to look at the guilt they feel themselves.

But, hey, it doesn't matter if it is childish! You do what you need to do to be comfortable. And, all children are difficult at some time or another. My son was difficult. That does not give me the right as a parent to ask him to pay for it over and over. He wasn't being difficult just to spite me and make it harder on me as a mother. It was what it was. Time to get over it and get on with life.

 

[deafskeptic]

It's amazing, as I think I've said before, how we humans were made to change and thrive in any kind of situation. We all get scared when such big changes happen to us...I think it's remarkable how many of us go on, grow, and become better people because of it, rather then inspite of it. I'm in a positive mood about it today. I discovered that it's very easy to turn off my hearing aids while my mother (here for a visit) gets stressful at me. I love my mother but she has a lot of tense energy, and I think I only avoided a panic attack because I was completely able to 'turn her off' (she wasn't talking to me, but rather, about me...so it wasn't rude of me, I hope. Makes me very unhappy to be talked about like I'm not there, but she's done it all my life and probably will continue until she dies.

Lol. I think I can relate to mother problems... I always feel like turning off my implant around my mother and my dad. My mother is one of those people who have to be unhappy about somthing and my dad is obbessed with order so I can only take my parents in small does.