Adjustment to late onset deafness

Sorry about your frustration...........Sounds as if you have serious fluid and infection. Perhaps a burst eardrum as well, but that is a guess.
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Thanks Jillio. Yes, as the titled :) "Hole Filler" I am at a disadvantage right now. I am the person who helps fill the holes in conversation and content as advocate, SSP, and so on - so If I can't hear it either I can't help anyone.
The CIPRO has done nothing so I have an appointment next week.

Everyone has their own definition of what it means to be deaf..I can hear some but I consider myself deaf but someone else who hears like I do may not be comfortable considering themselves deaf.
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Very true. With ran256 he has lesser and lesser hearing even with HAs but as yet does not say, "I am D/deaf". In almost any situation these days though I am more SODA/SSP with him.
 
hey,

I got pointed in this direction. I've lost my hearing as a result of a head injury and im not profoundly deaf. I was pointed in this direction for a bit of support and to talk with people who understand where im coming from. Ive struggled to come to terms with whats happened to me but i think im reaching the point where i can say im deaf and thats just part of me now!

:D
 
FaithLee said:
thank you! think ive finally found somewhere i feel understood and welcome! :D
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I can assure you, with the variety of individuals we have here, you will definately find someone who understands.
 
adamledlow said:
Hey all,

Bottesini was nice enough to recommend this forum for me after reading my "intro" from yesterday. What a huge relief to find others who are late deafened! In all honesty, I didn't even know the term existed, so to find a whole room full of you is a bit overwhelming (and nice). I see most people start off with a little intro to their situation, so I hope you don't mind if I copy and paste some of mine from the other forum:

I was born hearing and lived a hearing life until age 19. In March Break of that year, my Mom complained that I never seem to listen. I told her I couldn't really hear her, so we went to get my hearing tested. Turned out I had severe hearing loss and had been getting by (subconsciously) by lip-reading. I got my first pair of hearing aids a couple of months later.

At the time, I played in a (loud) band and so I attributed the hearing loss to playing in and attending concerts (and one plane ride a few years earlier when I had a bad head cold). A bit scared by the hearing loss, I tried to get my act together: quit the band, attended far fewer concerts, and for the ones I did attend, I would wear ear plugs. That seemed to do the trick until about six months to a year later, when the hearing aids didn't seem to be doing their job anymore. So I got newer, more powerful aids. A year or so later, same thing. My hearing continued to deteriorate, until my loss (ski slope loss for anyone who knows what I mean) had trickled down into the "profound" category, where it remains (fingers crossed) today.

Audiologists who had been happy with the "played his music too loud" theory before, were now chalking it up to the loss being hereditary, despite no one in my family past or present ever having worn hearing aids. They said I've probably been losing my hearing for my whole life and just never really noticed. And on top of that, they said I should assume I'm just going to eventually lose it all some day.

So here I am, 27, and waking up every day wondering if this is the best I'll ever hear again...Good times.

That said, it has been unbeliveably refreshing (and occasionally emotional) for me to read a number of your stories on here. Something as simple as knowing that other deafened people leave the water running too was enough to make my day! :) I look forward to getting to know you guys over the coming weeks and months!
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Hey,

I just wanted to let you know your not alone! Your story sounds ALOT like mine. I am 27 and a guitarist in a band as well. I started wearing ear plugs to shows and all that jazz (which my pals love to pick on me for it *sigh*). I started having hearing loss about 3 years ago and the audiologist also attributed it loud music. Recently my hearing has rapidly began to decrease, and we've been doing tests rule out all kinds of junk. Looks like I will be getting my first hearing aid in early June.

Just wanted to welcome you to the board and tell you to keep your head up!

Sara B.
 
my name is susan and i am new to this site. i found it actually on accident. i am 33 and dealing with losing my hearing. i've struggled with hearing issues for as long as i can remember, but when i was little, everyone thought i was just not paying attention. my ENT / audi recently told me that i need hearing aids and that i need to learn to deal with being HOH. she thinks that my hearing loss is genetic and will more than likely be progressive. i am unsure how i am going to get two hearing aids when i was told that my insurance company doesn't cover them. any suggestions?
 
Welcome Susan. I think I came here for info, and ended up with new friends and another family.


 
I was brought up in an all deaf family I was the only hearing member in it. When I was 18 I lost a whole lot of my hearing over about 3 months its genetic and I had expected it but maybe not till I was older. I had been brought up in the deaf community and learned BSL at an early age. My language skills were slightly behind the others at school as I had nobody that was hearing to teach me. I was a bit fazed to have to have HAs but managed. When I was 25 I lost the rest of my hearing while giving birth to my daughter who was born profoundly Deaf. I wear HAs to hear enviromental noises but I dont hear speech at all. The point of telling you all this is .... I accepted my profound hearing loss properly when my daughter came into the world, maybe I lost my hearing so that I could show her the way. We have very few problems at all and she was signing at a very young age. Both she and I are well grounded individuals who enjoy our lives and enjoy who we are.
 
charlotte1 said:
I was brought up in an all deaf family I was the only hearing member in it. When I was 18 I lost a whole lot of my hearing over about 3 months its genetic and I had expected it but maybe not till I was older. I had been brought up in the deaf community and learned BSL at an early age. My language skills were slightly behind the others at school as I had nobody that was hearing to teach me. I was a bit fazed to have to have HAs but managed. When I was 25 I lost the rest of my hearing while giving birth to my daughter who was born profoundly Deaf. I wear HAs to hear enviromental noises but I dont hear speech at all. The point of telling you all this is .... I accepted my profound hearing loss properly when my daughter came into the world, maybe I lost my hearing so that I could show her the way. We have very few problems at all and she was signing at a very young age. Both she and I are well grounded individuals who enjoy our lives and enjoy who we are.
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Thank you for sharing that Charlotte, and I must say that I am in agreement with your perspective. I personally believe that all things happen for a reason. That reason may not be evident to us immediately, but there is always a reason. For years, I have held the personal belief that I was given a deaf son in order to expand my world and open me to a whole new culture and way of life that has not only enriched my life, but allowed me to be of service to my fellow man.
 
I didn't become hard of hearing till I was in my 30's beause of something that happened while serving in the Army. I can related to those losing the ability to communicate to people they knew hen they could hear well. I have lost friends, relationships, and my self esteem and I'm still trying to get back on my feet. I realize now that I can never have the life I had before becoming hard of hearing. Not because of me, but because for them, it's a change they cannot accept. For me it's time for a new life, a new beginning which I hope to get started soon. It's amazing how my so called frineds, family and colleagues make fun of or avoid a person when things happen to them that are beyond their controll. Even a small insignificant thing like the inability to carry a conversation between cubicles or hear a date talk in a club. Maine has very little in the way of support groups for the deaf or HOH so I'm considering moving to another location as part of the fresh start.
 
cdaigle430 said:
I didn't become hard of hearing till I was in my 30's beause of something that happened while serving in the Army. I can related to those losing the ability to communicate to people they knew hen they could hear well. I have lost friends, relationships, and my self esteem and I'm still trying to get back on my feet. I realize now that I can never have the life I had before becoming hard of hearing. Not because of me, but because for them, it's a change they cannot accept. For me it's time for a new life, a new beginning which I hope to get started soon. It's amazing how my so called frineds, family and colleagues make fun of or avoid a person when things happen to them that are beyond their controll. Even a small insignificant think like the inability to carry a conversation between cubicles or hear a date talk from a dance club. Maine has very little in the way of support groups for the deaf or HOH so I'm considering moving to another location as part of the fresh start.
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That's why as a profoundly deaf person growing up around only hearing peers, I felt so isolated even though I can speak very well. I understand how u feel. :hug:
 
charlotte1 said:
I was brought up in an all deaf family I was the only hearing member in it. When I was 18 I lost a whole lot of my hearing over about 3 months its genetic and I had expected it but maybe not till I was older. I had been brought up in the deaf community and learned BSL at an early age. My language skills were slightly behind the others at school as I had nobody that was hearing to teach me. I was a bit fazed to have to have HAs but managed. When I was 25 I lost the rest of my hearing while giving birth to my daughter who was born profoundly Deaf. I wear HAs to hear enviromental noises but I dont hear speech at all. The point of telling you all this is .... I accepted my profound hearing loss properly when my daughter came into the world, maybe I lost my hearing so that I could show her the way. We have very few problems at all and she was signing at a very young age. Both she and I are well grounded individuals who enjoy our lives and enjoy who we are.
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Wow! That is an inspiring story!
 
I have this little issue with my father. He's quite elderly and he and I are very close. We have been together on trips several times since I lost my hearing, but between times I think he forgets/denies that I can't hear. He continues to send me e-mails with video clips that are entirely spoken, and others with music. When we were together last month for a family gathering, he asked me why I was signing and not speaking (I had an interpreter friend come along since dinner was with 18 family and friends). I explained that it was hard to judge my volume in such a large crowd and I wanted to make sure I was understood; I also mentioned that I was speaking but perhaps he didn't hear me well. As a side bar, he just saw an audiologist last week and was found to have a severe/profound high frequency loss, and is getting BTE aids shortly.

I love my dad dearly, and I think he is trying really hard to accept that he can't fix what happened to his "baby girl". But I also feel a bit frustrated and don't know how to deal with my own feelings. I've reminded him a couple of times that the e-mails with sound are impossible for me to understand; I don't want to keep reminding him because I'm afraid of hurting him. I'm afraid to just delete these because some are captioned or written and accessible to me. I wonder how many other late deafened are experiencing similar issues?
 
just a month ago i experienced sudden hearing loss it has become very hard to adjust with hearing people but,since i know ASL and im very involved in the deaf community it is very easy for me to be with deaf.
 
cdaigle430 said:
I didn't become hard of hearing till I was in my 30's beause of something that happened while serving in the Army. I can related to those losing the ability to communicate to people they knew hen they could hear well. I have lost friends, relationships, and my self esteem and I'm still trying to get back on my feet. I realize now that I can never have the life I had before becoming hard of hearing. Not because of me, but because for them, it's a change they cannot accept. For me it's time for a new life, a new beginning which I hope to get started soon. It's amazing how my so called frineds, family and colleagues make fun of or avoid a person when things happen to them that are beyond their controll. Even a small insignificant thing like the inability to carry a conversation between cubicles or hear a date talk in a club. Maine has very little in the way of support groups for the deaf or HOH so I'm considering moving to another location as part of the fresh start.
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Hey there... as a fellow Mainer I thought this link might help you. Maine Center For Deafness They have a peer support group that includes late deafened adults, d/Deaf, HoH, and adults with language delays. I'm not sure what area your in but I know they have groups for both Bangor and Portland (possibly Farmington). I work with a client who is nonverbal and uses ASL and we go to alot of events together. You might want to look into it!
 
Thats always is nice to have a support when a situation arises. when I lose my hearing my wife was my only confidant, and I feel like she was just being fake though- hence ex marriage actuallly:giggle:
 
I was born deaf in L ear and HoH in R ear, and recently my dad has started to lose his hearing. He used to badger me all the time about how I can't hear, I can't, I can't do anything because I can't hear.

Well now when he is in a situation where he cannot hear and whines about it, I simply tell him, that's how I've felt all my life and you badgered me for it. Now karma is coming for you.

But here lately instead of badgering me about my hearing, he's begun to treat me more as an equal. I think he's finally realized what struggles I go through and now he understands more if I misheard a message, or if I didn't understand an instruction. You can't do what your told if you never received the message in the first place. :giggle:
 
Dixie said:
I was born deaf in L ear and HoH in R ear, and recently my dad has started to lose his hearing. He used to badger me all the time about how I can't hear, I can't, I can't do anything because I can't hear.

Well now when he is in a situation where he cannot hear and whines about it, I simply tell him, that's how I've felt all my life and you badgered me for it. Now karma is coming for you.

But here lately instead of badgering me about my hearing, he's begun to treat me more as an equal. I think he's finally realized what struggles I go through and now he understands more if I misheard a message, or if I didn't understand an instruction. You can't do what your told if you never received the message in the first place. :giggle:
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Better late than never on that understanding, huh, Dixie?
 
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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