Adjustment to late onset deafness

:wave: hubby is very blunt and I had some interaction with the Deaf community before I started losing my hearing, so I don't remember being surprised by bluntness but I still know how important it was and is for me to be open here, to try not to take things personally, to think about what I can learn and to keep trying. My nature is to be shy and sensitive but I'm also persistent and flexible.

Perfection!!
 
And still, some of the bluntness is hard for anybody to take, but you have to be strong. I was considered to be late deafened, but upon further review, I was hoh since birth and recently went total deaf. I am still gaining my "sea legs" as Botti says.
 
Wow KB! Even after 5,404 posts!

I'm not late-deafened technically (was born severely deaf), but I often visit this thread because I was introduced to the Deaf community late. Raised oral and only knowing about the Deaf community and sign language since June last year, I feel I can relate to some of the issues here. I only comment however, when I feel I have something to contribute. :)
 
Wow...I'm really glad I found this thread...

I am SOOOO glad someone had already started this thread, and even more glad that I found it!

I am fairly new to AD and I am dealing with trying to adjust to late onset deafness. Most of the time I am ok with it and just accept the fact that there is nothing else I can really do but accept it. But, what is hard is dealing with the way things have changed with interacting out in society.

It came as quite the shock just how differently people treat someone who has some sort of "disability" or "impairment". The worst is how people just sort of ignore you and leave you out of a conversation, or how some people will look at you like you're something pitiful. Also, being treated like I'm also hard-of-thinking or even mentally retarded is really annoying. I've even gotten aggravated enough at points with the patronizing attitudes to just let whoever know, "Hey! I may be deaf, but I'm NOT retarded nor stupid!" (Yes, I am very plain-spoken and outgoing by nature. LOL)

I have found getting employment harder now too. I spent most of my adult life as a house wife and raising kids and put higher education on hold. I am now 42, 97% deaf, and any sort of job I am qualified for has been an experience in humiliation when I have applied. It's pretty much, "Oh, wow...your deaf...well...we'll call you if we need you." Pisses me off to be honest.:pissed:

My poor hubby became very ill 2 years ago and lost his regular job. He has never really recovered from the illness and isn't really able to hold down a "regular job" right now either. We now have no insurance. So, we now have no way for me to even see a hearing specialist or for him to see a doctor get him back healthy again. My hubby is also a freelance journalist and writer...(which is his passion and was a sort of second job before he lost his time clock job.) He is at present writing web-copy for piss pay...which is a waste of his talents honestly. (Google him...William Douglas Mefford or just Douglas Mefford...and you'll find his stuff all over the web. He has written about loads of stuff! Yes...I am very proud of him. :D)

After being told numerous times I needed to apply for disability benefits...I finally did...twice...and got turned down both times. I was told I wasn't blind or crippled so I didn't qualify. (WTF?) I wanna go back to school, and have even found a school that offers the course of study I want, but I have been told I don't qualify for financial aid.


Frankly, I am usually a very easy going person with an upbeat and positive outlook on things. And, when I realized my hearing was going the way of the dodo I decided I was going to see the silver lining in all of this. Then everything else happened and it has been hard to always keep that positive outlook. As a matter of fact, I've been having one of those "down moment" sort of nights. (I've turned into a night owl and stay up all night and sleep all day.) Anyone got any suggestions or good advice or even a good joke? I'm all ears! :giggle:
 
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Hey there! I'm pretty new. I started realizing I wasn't hearing so well when I was almost 20, now, at 23, I am severely hoh. I have good and bad days. Some days I remember that there are so many others going through similar and worse things that there is no sense in wallowing in self-pity. Other days, things tigger me, like when I can't hear my baby cooing or when I see my husband mouthing 'I love you', and I then I get pretty upset and depressed. There is sooooo much I don't understand about losing hearing. I don't understand all the technology and I, while I practise the little ASL I know frequently, I don't have anyone to practise with. I get pretty lonely. I feel very isolated. But, you know, this is a great idea for a thread...and I hope lots of late deafened people respond to it. I'd really like to hear other stories. I'll be checking in often...like I said, I can be a little moody...sometimes I'll be cheerful and sometimes ready to cry...but I guess others go through that too. I have another ENT appointment tommorrow. Yikes. Maybe they'll be able to tell me what is wrong though! Thanks for starting this Jillio!

Oh wow...yeah...I am having issues like this...most of the time I am okay. But sometimes when I see my hubby, who is SOOOO wonderful, mouthing I love you or realize I can't hear the rain falling or things I used to take for granted when I could hear it gets me all weepy eyed sometimes. What mostly gets me down is seeing the frustration in my hubby's face because he feels like he's letting me down because we have no way of getting me any sort of help with the hearing loss right now.
 
I am sorry it has been a while since I was on.... been a heck of a couple months for me too. Been diagnosed with bilat Menieres and near daily vertigo attacks. Developed something with my heart a month and a half ago.... Just nastiness. Trying to hang on to some semblence of life. I had the saem experience with the local HLAA. I am goign to be undergoing treatments end of this month into the new year that most likely will cost me the rest of my hearing and kill my vestibular function if my ENT is right. So I was looking into getting prepared and they were like "grow up and look online". My response was... umm where? If I am new to HOH and not deaf yet..... where do I look.. I know nothing about it yet.... I don't know what groups there are yet. My case manager has no clue either. I was severely angered by it. Fortunately I made some friends who were a bit more sensitive and understood and gave me a first steps direction so I had a clue where to start. I am really impressed with my mom who is carrying around ASL books and asking a lot of questions of friends who have deaf children and terps and trying to learn. My daughter is picking it up too and loving it! Me... I am scared to death to be honest. My doc said, even if they don't do the treatments to kill the hearing fast, at the pace I am going with my attacks, it will likely be gone in a couple years on it's own. I already can't hear 90% of the phone. (and could 6 months ago) I have to teach my folks to text!!!
 
I am sorry it has been a while since I was on.... been a heck of a couple months for me too. Been diagnosed with bilat Menieres and near daily vertigo attacks. Developed something with my heart a month and a half ago.... Just nastiness. Trying to hang on to some semblence of life. I had the saem experience with the local HLAA. I am goign to be undergoing treatments end of this month into the new year that most likely will cost me the rest of my hearing and kill my vestibular function if my ENT is right. So I was looking into getting prepared and they were like "grow up and look online". My response was... umm where? If I am new to HOH and not deaf yet..... where do I look.. I know nothing about it yet.... I don't know what groups there are yet. My case manager has no clue either. I was severely angered by it. Fortunately I made some friends who were a bit more sensitive and understood and gave me a first steps direction so I had a clue where to start. I am really impressed with my mom who is carrying around ASL books and asking a lot of questions of friends who have deaf children and terps and trying to learn. My daughter is picking it up too and loving it! Me... I am scared to death to be honest. My doc said, even if they don't do the treatments to kill the hearing fast, at the pace I am going with my attacks, it will likely be gone in a couple years on it's own. I already can't hear 90% of the phone. (and could 6 months ago) I have to teach my folks to text!!!

HeyRubiegem8280:wave:
I have to ask, what is bilat Menieres? Odd you mentioned vertigo attacks because I have had those on and off too...I have a weird sort of dizziness on a daily basis although it isn't severe. What are the symptoms of this bilat Menieres?
I started having problems with my hearing in my early 30s. I developed an awful roaring in my right ear and then my left. By the time I was in my late 30s I had lost all the hearing in my right ear, and about 70-80 percent in my left. In the last 3 years my hearing has declined rapidly and I am now 97% deaf. I No longer have that roaring in my right ear and it's diminishing in my left ear as the hearing I have left goes.

I really hope the heart issues are not serious because it sounds like you are rather young. I am so sorry life has been on the sucky side for you. Do your best to dwell on the good things in your life...it really does help. That has been the only way I haven't just sunk into utter despair over all of the stuff that has went on in my life over the last several months/years. :aw:
 
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I'm another on here that has Meniere's and I MAY be going bi-lateral. I just had a VNS about a month ago. That operation is supposed to help preserve hearing, but somehow I seem to have gone deaf in that ear anyway. I don't think it was from the surgery - but rather that I continue to have Meniere's attacks although they are different after the VNS. Now my right ear seems to be acting up.

I've been working on learning ASL as there is a good chance I'll end up pretty much totally deaf. I found some great deaf groups sort of near me and they have helped a whole lot. I don't get to go as often as I can't drive yet. Fortunately for me, I met a friend on here who drove me whenever she went. But since the VNS I've not been able to go too far at all. (it's being a b*tch of a recovery for me).

I actually found this board before I knew for sure I had Meniere's or that my hearing was really going. I'd have to say I've never felt looked down upon or anything. But then I tended to post only to threads where I felt I had something to say or could participate in.

And Rubigem8280 was kind enough to email me after the VNS to check up on me - as she knew me from the Meniere's Board too.

I know there certainly some spats and arguments on this forum, but for the most part, I think the people here are very helpful and supportive.

Actually, I think ANY forum is going to have those who battle. Heck, I belong to a Disney Board and some of the nastiest fights I've ever seen have been on there! :roll:
 
I'm another on here that has Meniere's and I MAY be going bi-lateral. I just had a VNS about a month ago. That operation is supposed to help preserve hearing, but somehow I seem to have gone deaf in that ear anyway. I don't think it was from the surgery - but rather that I continue to have Meniere's attacks although they are different after the VNS. Now my right ear seems to be acting up.

I've been working on learning ASL as there is a good chance I'll end up pretty much totally deaf. I found some great deaf groups sort of near me and they have helped a whole lot. I don't get to go as often as I can't drive yet. Fortunately for me, I met a friend on here who drove me whenever she went. But since the VNS I've not been able to go too far at all. (it's being a b*tch of a recovery for me).

I actually found this board before I knew for sure I had Meniere's or that my hearing was really going. I'd have to say I've never felt looked down upon or anything. But then I tended to post only to threads where I felt I had something to say or could participate in.

And Rubigem8280 was kind enough to email me after the VNS to check up on me - as she knew me from the Meniere's Board too.

I know there certainly some spats and arguments on this forum, but for the most part, I think the people here are very helpful and supportive.

Actually, I think ANY forum is going to have those who battle. Heck, I belong to a Disney Board and some of the nastiest fights I've ever seen have been on there! :roll:

Hmmm, I haven't seen any spats on here yet, but I would imagine there are or will be too....especially in the political forum. LOL

I'm beginning to wonder about this Meniere's disease and if it hasn't been what I have been dealing with for years. In any case it hardly matter anymore I guess because my hearing is pretty well gone. :dunno2: Many of the symptoms you, Rubiegem and others have described sound an awful lot like what I have dealt with for a long time.

At this point in my life I am just trying to learn to deal with living without any hearing and dealing with some of the emotional and societal issues. Most of the emotional issues stem from how other people seem to react to me now. My immediate family, (mother and 1 of my sisters...estranged from the other sister) act like this is something that will just go away and still get upset I don't call them. (I live in Ga. and they live in Ky.) Not very understanding or supportive. I'm very lucky to have my hubby who has been very patient and understanding through all of this.
 
It came as quite the shock just how differently people treat someone who has some sort of "disability" or "impairment". The worst is how people just sort of ignore you and leave you out of a conversation, or how some people will look at you like you're something pitiful. Also, being treated like I'm also hard-of-thinking or even mentally retarded is really annoying.

Yep, that pretty much sums up what we all go through. I lost 80-90% of my hearing when I was 4, and have had to put up with the bullshit for the next 40 years.

I have found getting employment harder now too. I spent most of my adult life as a house wife and raising kids and put higher education on hold. I am now 42, 97% deaf, and any sort of job I am qualified for has been an experience in humiliation when I have applied. It's pretty much, "Oh, wow...your deaf...well...we'll call you if we need you." Pisses me off to be honest.:pissed:

Unfortunately, 95% of the workforce out there considers deafness equal to being retarded. Sadly, the only ways a deaf person can get a job are either by having a friend/relative in the workplace to convince employers that you are the right person for the job, when the government forces employers to hire disabled persons, or when a company is desperate for workers and you are the only one to closely qualify.

The only reason I was able to get both of my jobs is because someone in the office knew me and convinced the owner that I can do it, and I can communicate verbally. Even though I could hear some with my hearing aid, I felt pressure to hear more and eventually got a CI about 7 years ago. It made a big difference, but it is not perfect. My employers are still not happy that I cannot understand all the staticky talk on the Nextels, even though I don't need to use them. Deaf people usually have to work 2-3 times harder than their counterparts to prove that they can do it. It also takes many years to gain your co-workers' respect.


After being told numerous times I needed to apply for disability benefits...I finally did...twice...and got turned down both times. I was told I wasn't blind or crippled so I didn't qualify. (WTF?) I wanna go back to school, and have even found a school that offers the course of study I want, but I have been told I don't qualify for financial aid.

Not sure what method of disability application process you are going through, but: You need to go into your local Social Security office and get an application for disability benefits. They will need proof that you are disabled. In the Fed Gov't's eyes, you are disabled if your hearing test shows that you have less than 50% speech discrimination and if your dB loss is higher than a certain number. Social Security will set up an appointment at an audiologist of THEIR choice for you to be tested. They will pay for the appointment, not you.

If you already did this, they might have concluded that you are not 'deaf enough'. If you say that you are 97% deaf, that is more than enough.

Don't wear your hearing aid(s) when you go in for an application. You need to frustrate them when they can't communicate with you. Don't wear your aids when you go in for the hearing test, and don't reply to the smallest sound you can hear. Wait for it to get somewhat loud.

If you want to go back to school, and you already qualify for disability, your local VR office can help.

Unfortunately, when SS declares you 'disabled', you have to wait 6 months before collecting benefits, unless you have proof that your hearing went bad at a certain time awhile back.


Sorry to hear about your hubby's issues. This economy doesn't help much either.
 
Yep, that pretty much sums up what we all go through. I lost 80-90% of my hearing when I was 4, and have had to put up with the bullshit for the next 40 years.



Unfortunately, 95% of the workforce out there considers deafness equal to being retarded. Sadly, the only ways a deaf person can get a job are either by having a friend/relative in the workplace to convince employers that you are the right person for the job, when the government forces employers to hire disabled persons, or when a company is desperate for workers and you are the only one to closely qualify.

The only reason I was able to get both of my jobs is because someone in the office knew me and convinced the owner that I can do it, and I can communicate verbally. Even though I could hear some with my hearing aid, I felt pressure to hear more and eventually got a CI about 7 years ago. It made a big difference, but it is not perfect. My employers are still not happy that I cannot understand all the staticky talk on the Nextels, even though I don't need to use them. Deaf people usually have to work 2-3 times harder than their counterparts to prove that they can do it. It also takes many years to gain your co-workers' respect.




Not sure what method of disability application process you are going through, but: You need to go into your local Social Security office and get an application for disability benefits. They will need proof that you are disabled. In the Fed Gov't's eyes, you are disabled if your hearing test shows that you have less than 50% speech discrimination and if your dB loss is higher than a certain number. Social Security will set up an appointment at an audiologist of THEIR choice for you to be tested. They will pay for the appointment, not you.

If you already did this, they might have concluded that you are not 'deaf enough'. If you say that you are 97% deaf, that is more than enough.

Don't wear your hearing aid(s) when you go in for an application. You need to frustrate them when they can't communicate with you. Don't wear your aids when you go in for the hearing test, and don't reply to the smallest sound you can hear. Wait for it to get somewhat loud.

If you want to go back to school, and you already qualify for disability, your local VR office can help.

Unfortunately, when SS declares you 'disabled', you have to wait 6 months before collecting benefits, unless you have proof that your hearing went bad at a certain time awhile back.


Sorry to hear about your hubby's issues. This economy doesn't help much either.

Hello green427,
I don't have a hearing aid, I can't afford those things! Thousands of dollars for a hearing aid is pretty well outside of my budget right now. When I applied for the disability I lived in Tennessee and the interviews were extremely frustrating. Frankly, I have no idea what the audiologist they sent me to said on her report...all she told me was that I had maybe 5% hearing in my left ear at the time, but it could be improved with the use of a hearing aid. I know that I left there wishing I had at least one hearing aid because the one they tried actually worked at the time and for a few minutes I could hear again. In the months since then, the hearing I had left has diminished to the point that I can hear nothing except the very highest pitched tones in my left ear...and those are getting more faint all the time.

I did find a couple of places online last night called GACHI and and G.R.E.A.T. D.A.Y Inc. I am hoping that maybe they can help me with these issues.

The fact that this society treats Deaf folks like we are retarded really galls me. I know things are really tight for my hubby and me right now because I haven't been able to get a job. Fortunately for us, we don't have to worry about being homeless though. We live with a friend who has MS. Her husband of 22 years decide that he didn't want to be a he anymore and abandoned her to run off and have a sex change. (They are now divorced. While she is still able to walk, she is no longer capable of taking care of the major chores around the house, such as cleaning and yard work, house repairs, etc.)

Oh well, gotta look on the bright side of things. Where there is life there is hope. Me hubby and I are tough. We'll get through. Where there's a will there is a way...and so on. LOL Honestly, finding this forum has been a huge help to me. It is really helping me to cope with this. Thanks everyone.:aw:
 
Hello green427,
I don't have a hearing aid, I can't afford those things! Thousands of dollars for a hearing aid is pretty well outside of my budget right now. When I applied for the disability I lived in Tennessee and the interviews were extremely frustrating. Frankly, I have no idea what the audiologist they sent me to said on her report...all she told me was that I had maybe 5% hearing in my left ear at the time, but it could be improved with the use of a hearing aid. I know that I left there wishing I had at least one hearing aid because the one they tried actually worked at the time and for a few minutes I could hear again. In the months since then, the hearing I had left has diminished to the point that I can hear nothing except the very highest pitched tones in my left ear...and those are getting more faint all the time.

I did find a couple of places online last night called GACHI and and G.R.E.A.T. D.A.Y Inc. I am hoping that maybe they can help me with these issues.

The fact that this society treats Deaf folks like we are retarded really galls me. I know things are really tight for my hubby and me right now because I haven't been able to get a job. Fortunately for us, we don't have to worry about being homeless though. We live with a friend who has MS. Her husband of 22 years decide that he didn't want to be a he anymore and abandoned her to run off and have a sex change. (They are now divorced. While she is still able to walk, she is no longer capable of taking care of the major chores around the house, such as cleaning and yard work, house repairs, etc.)

Oh well, gotta look on the bright side of things. Where there is life there is hope. Me hubby and I are tough. We'll get through. Where there's a will there is a way...and so on. LOL Honestly, finding this forum has been a huge help to me. It is really helping me to cope with this. Thanks everyone.:aw:

Vocational Rehabilitation may pay for a hearing aid for you and help you find a job too. You should get in touch and see what they can offer.
 
Vocational Rehabilitation may pay for a hearing aid for you and help you find a job too. You should get in touch and see what they can offer.

I sent the local VR an email friday asking about any services or help they could offer. (Can't hear a phone conversation anymore.) I hope I get a reply soon! I realized after talking to a lot of you here that I did need help learning to cope with the issues that come with becoming deaf. All I can say is thanks. I am a very strong-minded and strong-willed person, but I'm not too stubborn, thick-headed or too proud to know when I am in over my head and need help. *sniff* I love this forum!:ty:
 
It IS overwhelming. I'm only dealing with one ear deafness, but it's enough to really turn my world around. To go through both must be even worse.

I haven't even discussed aids yet with my ENT or Neurotologist as I couldn't afford them. (However I have applied for SSI and SSDI) I know there ARE services out there.

And sometimes just having someone objective to talk to can help. (what I mean by objective is family and friends just dont' really "get" it sometimes). I got sent to a psychologist for my SSDI claim, and I found myself wishing I could see a counselor. I'm going to look into that.
 
I sent the local VR an email friday asking about any services or help they could offer. (Can't hear a phone conversation anymore.) I hope I get a reply soon! I realized after talking to a lot of you here that I did need help learning to cope with the issues that come with becoming deaf. All I can say is thanks. I am a very strong-minded and strong-willed person, but I'm not too stubborn, thick-headed or too proud to know when I am in over my head and need help. *sniff* I love this forum!:ty:

VR people are pretty much swamped with requests, so I doubt you will ever see an email reply for months. Suggest you walk in their office and apply. Don't let them see the smart side of you, though. :lol:

Again, you will need proof that you are deaf. There are many people out there trying to milk the system, so they are weeding out those 'milkers'.
 
I sent the local VR an email friday asking about any services or help they could offer. (Can't hear a phone conversation anymore.) I hope I get a reply soon! I realized after talking to a lot of you here that I did need help learning to cope with the issues that come with becoming deaf. All I can say is thanks. I am a very strong-minded and strong-willed person, but I'm not too stubborn, thick-headed or too proud to know when I am in over my head and need help. *sniff* I love this forum!:ty:

I would, while you are waiting to hear from VR, or waiting to decide about going in to speak to someone face to face, go somewhere that will offer a free hearing test. For me, my local deaf service center does. I also know some hearing aid places (that I have since found to not be much good) will do free hearing tests. This way, you can have a current test with you when you can get an appointment with VR. I was fortunate to get into VR very easily and they sent me for testing, and I got hearing aids through them before I lost all of my hearing. The company they sent me to for my hearing aids is who I have since learned was not very good. (Thanks for that info Botti, it was very helpful. Seriously) (Beltone).
 
Hi

Hi I'm not sure how this works but I'm 25 and I lost all the hearing in my left ear 2yrs ago and partial hearing loss in my right ear, docs said may continue to loose hearing as time goes on. One thing I'm having a hard time with the hearing aids it's nothing like how I heard before so its hard to get used to. But to be honest, because my ASL isn't great I don't feel like I'm part of the Deaf community and I no longer seem to fit in with the hearing community.
 
Hi I'm not sure how this works but I'm 25 and I lost all the hearing in my left ear 2yrs ago and partial hearing loss in my right ear, docs said may continue to loose hearing as time goes on. One thing I'm having a hard time with the hearing aids it's nothing like how I heard before so its hard to get used to. But to be honest, because my ASL isn't great I don't feel like I'm part of the Deaf community and I no longer seem to fit in with the hearing community.

You could start by taking ASL classes and then get out and attend deaf events. That could help you find friends and feel more like you fit in.
 
I do go to deaf events and I am in ASL classes but still feel stuck in the middle... I guess in my mind I'm still hearing and feel like an impostor or something I know it seems silly I just feel dumb saying I can't hear you but at the same time I don't understand what your signing to me... :hmm:
 
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