Adjustment to late onset deafness - Page 8

jillio · 05-24-2009, 12:40 PM

Quote:

Originally Posted by whatdidyousay!

"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!

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.

dogmom · 05-24-2009, 02:56 PM

take what you wish, just sharing:

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 -

ms_redcat · 05-26-2009, 11:44 AM

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!

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!

November Gypsy · 05-26-2009, 09:42 PM

Quote:

Originally Posted by jillio

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.

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.

jillio · 05-26-2009, 09:50 PM

Quote:

Originally Posted by November Gypsy

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?

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 · 05-26-2009, 10:15 PM

Words of wisdom, as usual. Now, if I can just consistantly put them into practice, we'll be set. *Smiles*

jillio · 05-26-2009, 10:17 PM

Quote:

Originally Posted by November Gypsy

Words of wisdom, as usual. Now, if I can just consistantly put them into practice, we'll be set. *Smiles*

It would appear to me that you are very consistent. My words to you just keep changing because you are making such wonderful progress!

November Gypsy · 05-27-2009, 10:56 AM

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.

defgrl · 05-28-2009, 02:10 AM

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

deafdyke · 05-28-2009, 03:14 AM

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.

November Gypsy · 05-28-2009, 09:49 PM

It is an awesome thread. Thanks Deafdyke...I'll look up those organizations.

hohDougRN · 05-29-2009, 10:24 PM

Quote:

Originally Posted by defgrl

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

Way to go- sounds good. You will also have better chance for higher amplification if you end up needing it.

defgrl · 05-31-2009, 05:26 PM

I got my HAs on Friday and I just LOVE them! I have read so many books on how to"cope" with hearing loss. These were books written for people who want to (re)join the Hearing world. Which is a valid choice for a lotr of people. BUT, I would like to see a book written by, about, and for people who go through an "identity crisis" and then join the Deaf Community as HOH/Deaf. Just so people will know that THAT can be a choice for some as well.

Until recently, I was vacillating between "hearing impaired"/HOH. I think I will just call myself HOH for right now. It's what I feel most comfortable with.It is what "fits."

defgrl

hohDougRN · 05-31-2009, 08:31 PM

its nice to hear you are feeling better about things regarding your HA's. Wether or not you go on in deaf culture or hearing culture is your choice. I think we just want to be respected amongst our peers

Bear · 06-02-2009, 03:37 AM

Quote:

Originally Posted by DeafLissa90

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!!

Thanks DeafLissa,

yes life has gotten lots better for me as I got older, The CI is just a benefit for me now. I am totally happy with my deafness, as it did open up a new world for me. Im not sure if it is still hard on latened deaf, but I will say that it is hard on CIers. Many of us face so much criticism for getting the implant. Many people do not stop to consider why we may want one.

And yeah it would have been nice to have a lot more help and saved me about a year's worth of misery. I just wish the d/Deaf/HOH/CI were more accepting of each other NO MATTER WHAT. That is my dream.

Grummer · 06-02-2009, 03:42 AM

Quote:

Originally Posted by November Gypsy

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!

Me too, i know some assholes "deafies' thinking they're trueblue Deaf, nope they are just full of hate and they contribute to this double whammy of oppression, from both hearing and Deaf. In my opinion those so-called "Deafs" aren't deaf, they are just power mongers are utterly immature.

Bear · 06-02-2009, 03:44 AM

Quote:

Originally Posted by November Gypsy

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!

Thanks!! and yeah I do believe that we do need to be given time and understanding. You know I have been deaf for 20+years and Im gonna admit something that scares me to admit, especially here, but there are days when I still miss being hearing. There are days when I would give anything to have my hearing back. Does this mean that I still havent accepted that Im deaf and never will be hearing again? No, it just means that I am a normal person that still mourns the loss of hearing. If someone tells you that they dont, *latened deaf that is, not born deaf*, I would have to say they are lying. Because the truth is, we all have our days when we still get angry over being deaf. There are days when we all ask, why me?

IrishMatangi · 06-03-2009, 03:15 AM

I'm so glad that I found this forum. I'm Stephanie, 29, and I have been deaf for 5 months. Before that, I had standard, average, everday hearing.

So far, I've just been......pushing forward, I guess. Kind of jumping in with no regard to the consequences sometimes. The isolation gets to me though. I work on my communication skills (Hey, I can order fast food now like a pro!) but honestly, most of the time.....all the words look the same--it's plain old deduction and guesswork. I'm learning to sign, but I feel a lot like a toddler. Pointing at an object and knowing the "name" of it.

My circle of friends has dwindled to around 1 or 2. lol I'm in a new town...I want to go out and meet people--but I just can't figure out how!

Who can I REALLY have a fluid conversation with? (And I just can't get over how/why people stare at my ears! Does this happen to anyone else?! It's just craziness.

)

I DO miss my old life. I played (and was really into) music. I miss dating...so far all of my experiments have not turned out well. I have no idea what I'm going to do about a job.....I don't see too many newspaper ads for a deaf medical transcriptionist.

I've never been very visual, other than, you know....SEEING. So, it's been an adjustment.

However, it hasn't been all bad. It's changed my priorities....I notice a lot more nonverbal communication (which is funny, sometimes.) It seems to bring out the best AND worst in other people. It's almost like having a hidden view into someone's character.

But, I've probably told enough of my life story. I'm just grateful to find a thread (a STICKY, even.) for people like me.

November Gypsy · 06-04-2009, 09:45 PM

Quote:

Originally Posted by Bear

Thanks!! and yeah I do believe that we do need to be given time and understanding. You know I have been deaf for 20+years and Im gonna admit something that scares me to admit, especially here, but there are days when I still miss being hearing. There are days when I would give anything to have my hearing back. Does this mean that I still havent accepted that Im deaf and never will be hearing again? No, it just means that I am a normal person that still mourns the loss of hearing. If someone tells you that they dont, *latened deaf that is, not born deaf*, I would have to say they are lying. Because the truth is, we all have our days when we still get angry over being deaf. There are days when we all ask, why me?

*Big hugs* I have no doubt you are right: I can't believe any late-deafened person could say with complete honesty that they never miss hearing. That's rediculous. Of course we miss hearing sometimes. It was part of who we were, just like being deaf is part of who we are now. You can't cut off a limb and say you don't miss it occasionally, even if you have totally adjusted to living without it. Deafness is a life in and of its self, and it can be as great as any other life...but humans have a hard time with change, especially on an emotional level, and sometimes we look back because we are just human. That's fine. It's so sad that it's scary to admit that in a place like this. I understand why it is though...I'm a little nervous writing this response, but in this case ,I really believe what I'm saying. Am I any less of a person because I'm deaf? No. Am I a different person because I am deaf? Yes. Do I have a right to miss the old me on occasion (as long as I am not wallowing in self-pity)? You bet. *Hugs again* I totally get where you are coming from.

Bear · 06-04-2009, 10:20 PM

Quote:

Originally Posted by November Gypsy

*Big hugs* I have no doubt you are right: I can't believe any late-deafened person could say with complete honesty that they never miss hearing. That's rediculous. Of course we miss hearing sometimes. It was part of who we were, just like being deaf is part of who we are now. You can't cut off a limb and say you don't miss it occasionally, even if you have totally adjusted to living without it. Deafness is a life in and of its self, and it can be as great as any other life...but humans have a hard time with change, especially on an emotional level, and sometimes we look back because we are just human. That's fine. It's so sad that it's scary to admit that in a place like this. I understand why it is though...I'm a little nervous writing this response, but in this case ,I really believe what I'm saying. Am I any less of a person because I'm deaf? No. Am I a different person because I am deaf? Yes. Do I have a right to miss the old me on occasion (as long as I am not wallowing in self-pity)? You bet. *Hugs again* I totally get where you are coming from.

Thanks!! And yeah it is sad that we cant just fully admit our feelings out in the deaf community without fearing that SOMEONE, anyone would yell at us or whatever, and say things like, you just havent accepted being deaf! Or like you just think hearing is better than deaf. When it's really not true. And yes, you hit it dead on in your reply to me, exactly how one feels after being latened deaf.

The one thing I can't stand though is when we get that we arent deaf enough or that we werent born deaf so therefore we do not belong to the deaf community. Its getting less, with that response, but you would be surprised how much we still get that.

If we arent deaf enough or because we werent born deaf, we dont belong and to the hearing community, we dont belong because we arent totally hearing, then I ask where do we belong?

Hopefully, asking that will give some something to think about.

sallylou · 06-11-2009, 12:19 AM

I've found the right place! Hi, everyone!

I'm hard of hearing. I'm 45 YO. I got my BTE HAs about 2 years ago and I've adjusted pretty well. I have hereditary hearing loss. It's most likely a progressive hearing loss, and it's the progressive part that I'm having difficulty with.

I'm afraid.

I'm afraid of being vulnerable. I'm afraid that I won't be able to continue my profession. I'm afraid of being rejected. I'm afraid of being alone. Probably the same things that other people in the same circumstances fear.

Sometimes I cry then I pick myself up and move on. I guess that I'm in the grieving stage right now. I'm trying to be really in touch with my feelings and give myself time to sort out all of my emotions. This has been a bigger challenge that I expected. I had prepared for the *possibility* of getting the gene but the *reality* of having the genetic loss is totally different than the possibility.

Sometimes it's so hard to listen that I just want to tune out of the hearing world. I've always been a very visual person so I rely on printed material and the computer (thank dog for technology!).

I've been working on boundaries. I'm good about asking people to accommodate my needs. If a person is not willing to help me communicate, then I question whether the relationship is good for me. I told one person that I had a hearing loss and later she said "I thought that you were joking!" Yea, because hearing loss is so funny and I'd joke about that. This person is no longer my friend. What a freak!

I look forward to everyone's insights and ideas.

jillio · 06-11-2009, 10:15 AM

Quote:

Originally Posted by sallylou

I've found the right place! Hi, everyone!

I'm hard of hearing. I'm 45 YO. I got my BTE HAs about 2 years ago and I've adjusted pretty well. I have hereditary hearing loss. It's most likely a progressive hearing loss, and it's the progressive part that I'm having difficulty with.

I'm afraid.

I'm afraid of being vulnerable. I'm afraid that I won't be able to continue my profession. I'm afraid of being rejected. I'm afraid of being alone. Probably the same things that other people in the same circumstances fear.

Sometimes I cry then I pick myself up and move on. I guess that I'm in the grieving stage right now. I'm trying to be really in touch with my feelings and give myself time to sort out all of my emotions. This has been a bigger challenge that I expected. I had prepared for the *possibility* of getting the gene but the *reality* of having the genetic loss is totally different than the possibility.

Sometimes it's so hard to listen that I just want to tune out of the hearing world. I've always been a very visual person so I rely on printed material and the computer (thank dog for technology!).

I've been working on boundaries. I'm good about asking people to accommodate my needs. If a person is not willing to help me communicate, then I question whether the relationship is good for me. I told one person that I had a hearing loss and later she said "I thought that you were joking!" Yea, because hearing loss is so funny and I'd joke about that. This person is no longer my friend. What a freak!

I look forward to everyone's insights and ideas.

Welcome to AD, Sallylou, and to this thread. I'm sure that you will find others that understand exactly what you are feeling as they have gone down that path, or are currently going down that path. By sharing experiences, both good and bad, each individual that posts here becomes a bit stronger and more confident. We are happy to have you.

sallylou · 06-12-2009, 12:55 PM

Thank you, Jullio.

geri · 06-13-2009, 07:16 AM

Hi my name is geri from hartlepool in the north east i have only been totally deaf for 6-7 years now and still trying to come to terms with it i miss out on such a lot of things
i am a newbie.
i live in silence but see much more

geri · 06-13-2009, 07:25 AM

Hi Sallylou my name is Geri from the uk
i am a lady of 48 who has only been tottaly deaf for 7 yeard i sit and weep some time with pure frustration at how some people treat me. if you would to reply please do so at geri.james@ymail.com hope to hear from you thank you buy Geri

LDNanna · 06-15-2009, 11:54 PM

Hi Geri, and Sallylou. You guys are new? Welcome. Do either of you sign? I am late deaf, and am learning ASL with a young fellow who acts as my interpretor. I had a "real" interpretor for a while, but she left. No use staying in a four deaf person town. We do ok. I love this chat room. You will meet lots of nice folks.

sallylou · 06-18-2009, 03:37 PM

Hi, nan! I see that you're in San Angelo, which explains the small place. I've spent some time there, and it's a nice place.

I'm in Houston and that gives me access to more resources. Fortunately, there's a deaf church close to my home, where I can take ASL classes. My kids are home for the summer right now, but I plan to start in the fall.

I'm also planning to attend a deaf/HOH support group in a couple of seeks. I'll let you know how that goes!

There's a deaf coffee group that meets about 20-20 minutes away from my house, so I will have more people to practice ASL with. Maybe I'll organize a deaf coffee in my neighborhood in the future.

I'm a cub scout leader, and the pack leaders have been very supportive. I've been busy planning and organizing some summer events. That's been keeping me busy this summer. I'm also going to take Spanish lessons with my teenager. I'm highly visual so I will rely on the textbook a lot. With my hearing aids, I think that I can cope (but it'll probably make me very tired!). Before you know it summer will be over and I'll be able to sign up for ASL classes while the kids are at school or in the evening.

Geri, have you been able to locate resources in your area? You might search for support groups in your area. Your local community center or health care provides may be able to assist you in finding resources. Keep on reaching out!

Chie Seoung · 06-23-2009, 12:11 PM

I lost my hearing suddenly in my mid 20s from ototoxicity (chemical deafness). I lost everything, literally, and if not for the community support I received... I am not sure where I would be.

Now, years later, I lip read proficiently and, except for you wonderful mustached men, I get most of everything said to me. I can hear certain sounds and at times my hearing waivers and I can hear a few more sounds... but nothing compared to real hearing as everything is distorted. I have an 800# where my messages from clients and coworkers are sent to a transcription company and then returned to me with my messages, Blackberry is my constant companion, and I also carry a small laptop with me where ever I go. Always. I use it in case I have a hard time reading someone.

I work hard at socialization, constantly. I have become very touchy feely, which can put people off. I crave the contact that not hearing them has taken from me.

Something I struggle with a lot is that I fear large crowds. I don't have anxiety problems, but it is very rare that I will go alone into a large crowd without a trusted friend with me. I prefer 2 to 3 person groups, at the most 4.

My brain has been rewired for small groups, I think. I even notice when I am in text-based chat rooms, I can't seem to concentrate on the stream when it gets over a certain number of people.

There are other struggles as well, of course, but I meet them as I go. My life is wonderful and full and I have to work for things, sure, but who doesn't? The pain at first can seem more than you can deal with perhaps, and I hope those born deaf understand my meaning... it is quite an upheaval and the human condition would predispose anyone to a period of mourning at having lost something so relied on.

Don't ever be afraid or too proud to ask for help. We all need help from time to time.

Love,

Chie

JervisGermane · 06-23-2009, 01:14 PM

I must say, it is very depressing to me to read these posts. I'm not completely deaf yet, but it looks more and more like it's about to happen.
You all mention jobs, and "community support," which would be nice. I graduated from college two years ago and have spent every day since begging for the kind of work I went to school to avoid. I can't get hired at Wal-Mart or McDonald's because they have personality tests you must pass, and I can't. As for community support, I am living with my brother and father who tease me about my hearing loss, and my mother is too busy finishing a doctoral degree to help me at the moment.
I'm working at a restaurant in a kitchen with a very loud oven/vent system, and my boss and coworkers are getting very tired of repeating themselves to me over and over. I don't read lips, and that doesn't help.
I suffer from temporal lobe seizures which have the symptoms of various mood disorders - it was only recently diagnosed as such because for years the doctors thought I was mentally ill, until my symptoms grew so varied that they realized they couldn't be explained by a psychological disorder. I have been in and out of mental hospitals for years, including a criminal commitment resulting from a toxic reaction to a medication change. As a result, I can't pass a background check to get any kind of respectable job.
My hearing loss isn't caused by any kind of chronic illness or hereditary condition. I had intermittent ear infections when I was young, and had so many operatons on my ears that the scar tissue is causing my eardrums to collapse.
Everything seems hopeless right now.

dogmom · 06-23-2009, 01:50 PM

everybody and welcome again to chie, sallylou and Jervis,

I was recently discovered to have hearing loss by husband's audi <husband oral- deaf w/o aids> and also have math-related LD <diagnosed in college, includes spatial orientation and sequencing difficulty> and may be having issues related to CAPD <that's part of why I had said in a post in a different section I was worried about new job>. I was born premature at 6 and 1/2 months and was labeled as having speech and language problems, I spoke late and used gestures/body language as a toddler. I am an extremely visual-tactile person and sign some ASL. My supervisor gets very tired and frustrated with my asking him to show me something and/or repeat something again and again - just because I hear something doesn't mean I process it. I just keep trying and I write things down. But I understand it is very challenging to continue trying. I am saddened to hear about the lack of family support, Jervis. I think it does make it more difficult - my mother, while loving and kind, does not believe I have LD and that I simply don't try. I understand.
We have Deaf Coffees in my area too. Perhaps there is a local group <for the newcomers> like Late Deafened Association or Center for Deaf and hard of hearing.

05-26-2009, 10:15 PM	#216 (permalink)
November Gypsy The wandering Gypsy Join Date: Feb 2009 Location: Southern, USA Posts: 421 Blog Entries: 2	Words of wisdom, as usual. Now, if I can just consistantly put them into practice, we'll be set. Smiles __________________ Tell me, what is it you plan to do with your one wild and precious life?

05-27-2009, 10:56 AM	#218 (permalink)
November Gypsy The wandering Gypsy Join Date: Feb 2009 Location: Southern, USA Posts: 421 Blog Entries: 2	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. __________________ Tell me, what is it you plan to do with your one wild and precious life?

05-28-2009, 09:49 PM	#221 (permalink)
November Gypsy The wandering Gypsy Join Date: Feb 2009 Location: Southern, USA Posts: 421 Blog Entries: 2	It is an awesome thread. Thanks Deafdyke...I'll look up those organizations. __________________ Tell me, what is it you plan to do with your one wild and precious life?

05-31-2009, 05:26 PM	#223 (permalink)
defgrl Registered User Join Date: Nov 2008 Posts: 82	FINALLY got my new hearing aids I got my HAs on Friday and I just LOVE them! I have read so many books on how to"cope" with hearing loss. These were books written for people who want to (re)join the Hearing world. Which is a valid choice for a lotr of people. BUT, I would like to see a book written by, about, and for people who go through an "identity crisis" and then join the Deaf Community as HOH/Deaf. Just so people will know that THAT can be a choice for some as well. Until recently, I was vacillating between "hearing impaired"/HOH. I think I will just call myself HOH for right now. It's what I feel most comfortable with.It is what "fits." defgrl

05-31-2009, 08:31 PM	#224 (permalink)
hohDougRN GO UTAH JAZZ!! Join Date: Aug 2006 Location: utah Posts: 2,188	its nice to hear you are feeling better about things regarding your HA's. Wether or not you go on in deaf culture or hearing culture is your choice. I think we just want to be respected amongst our peers __________________ *Doug*

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05-24-2009, 02:56 PM	#212 (permalink)
dogmom Registered User Join Date: Feb 2009 Posts: 1,468	take what you wish, just sharing: 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 -

05-26-2009, 11:44 AM	#213 (permalink)
ms_redcat Feline Fancier Join Date: May 2009 Location: New York Posts: 30	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! 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!

05-28-2009, 02:10 AM	#219 (permalink)
defgrl Registered User Join Date: Nov 2008 Posts: 82	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

05-28-2009, 03:14 AM	#220 (permalink)
deafdyke So NOT a Princess! Join Date: Mar 2003 Location: Trebekistan Posts: 7,495	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.

06-03-2009, 03:15 AM	#228 (permalink)
IrishMatangi Registered User Join Date: Jun 2009 Location: Illinois Posts: 5	I'm so glad that I found this forum. I'm Stephanie, 29, and I have been deaf for 5 months. Before that, I had standard, average, everday hearing. So far, I've just been......pushing forward, I guess. Kind of jumping in with no regard to the consequences sometimes. The isolation gets to me though. I work on my communication skills (Hey, I can order fast food now like a pro!) but honestly, most of the time.....all the words look the same--it's plain old deduction and guesswork. I'm learning to sign, but I feel a lot like a toddler. Pointing at an object and knowing the "name" of it. My circle of friends has dwindled to around 1 or 2. lol I'm in a new town...I want to go out and meet people--but I just can't figure out how! Who can I REALLY have a fluid conversation with? (And I just can't get over how/why people stare at my ears! Does this happen to anyone else?! It's just craziness. ) I DO miss my old life. I played (and was really into) music. I miss dating...so far all of my experiments have not turned out well. I have no idea what I'm going to do about a job.....I don't see too many newspaper ads for a deaf medical transcriptionist. I've never been very visual, other than, you know....SEEING. So, it's been an adjustment. However, it hasn't been all bad. It's changed my priorities....I notice a lot more nonverbal communication (which is funny, sometimes.) It seems to bring out the best AND worst in other people. It's almost like having a hidden view into someone's character. But, I've probably told enough of my life story. I'm just grateful to find a thread (a STICKY, even.) for people like me.

06-11-2009, 12:19 AM	#231 (permalink)
sallylou Registered User Join Date: Jun 2009 Location: My own private Idaho Posts: 2,090	I've found the right place! Hi, everyone! I'm hard of hearing. I'm 45 YO. I got my BTE HAs about 2 years ago and I've adjusted pretty well. I have hereditary hearing loss. It's most likely a progressive hearing loss, and it's the progressive part that I'm having difficulty with. I'm afraid. I'm afraid of being vulnerable. I'm afraid that I won't be able to continue my profession. I'm afraid of being rejected. I'm afraid of being alone. Probably the same things that other people in the same circumstances fear. Sometimes I cry then I pick myself up and move on. I guess that I'm in the grieving stage right now. I'm trying to be really in touch with my feelings and give myself time to sort out all of my emotions. This has been a bigger challenge that I expected. I had prepared for the possibility of getting the gene but the reality of having the genetic loss is totally different than the possibility. Sometimes it's so hard to listen that I just want to tune out of the hearing world. I've always been a very visual person so I rely on printed material and the computer (thank dog for technology!). I've been working on boundaries. I'm good about asking people to accommodate my needs. If a person is not willing to help me communicate, then I question whether the relationship is good for me. I told one person that I had a hearing loss and later she said "I thought that you were joking!" Yea, because hearing loss is so funny and I'd joke about that. This person is no longer my friend. What a freak! I look forward to everyone's insights and ideas.

06-12-2009, 12:55 PM	#233 (permalink)
sallylou Registered User Join Date: Jun 2009 Location: My own private Idaho Posts: 2,090	Thank you, Jullio.

06-13-2009, 07:16 AM	#234 (permalink)
geri geri Join Date: Jun 2009 Location: hartlepool Posts: 5	Hi my name is geri from hartlepool in the north east i have only been totally deaf for 6-7 years now and still trying to come to terms with it i miss out on such a lot of things i am a newbie. i live in silence but see much more

06-13-2009, 07:25 AM	#235 (permalink)
geri geri Join Date: Jun 2009 Location: hartlepool Posts: 5	Hi Sallylou my name is Geri from the uk i am a lady of 48 who has only been tottaly deaf for 7 yeard i sit and weep some time with pure frustration at how some people treat me. if you would to reply please do so at geri.james@ymail.com hope to hear from you thank you buy Geri

06-15-2009, 11:54 PM	#236 (permalink)
LDNanna Everything purple is mine Join Date: Feb 2009 Posts: 887	Hi Geri, and Sallylou. You guys are new? Welcome. Do either of you sign? I am late deaf, and am learning ASL with a young fellow who acts as my interpretor. I had a "real" interpretor for a while, but she left. No use staying in a four deaf person town. We do ok. I love this chat room. You will meet lots of nice folks.

06-18-2009, 03:37 PM	#237 (permalink)
sallylou Registered User Join Date: Jun 2009 Location: My own private Idaho Posts: 2,090	Hi, nan! I see that you're in San Angelo, which explains the small place. I've spent some time there, and it's a nice place. I'm in Houston and that gives me access to more resources. Fortunately, there's a deaf church close to my home, where I can take ASL classes. My kids are home for the summer right now, but I plan to start in the fall. I'm also planning to attend a deaf/HOH support group in a couple of seeks. I'll let you know how that goes! There's a deaf coffee group that meets about 20-20 minutes away from my house, so I will have more people to practice ASL with. Maybe I'll organize a deaf coffee in my neighborhood in the future. I'm a cub scout leader, and the pack leaders have been very supportive. I've been busy planning and organizing some summer events. That's been keeping me busy this summer. I'm also going to take Spanish lessons with my teenager. I'm highly visual so I will rely on the textbook a lot. With my hearing aids, I think that I can cope (but it'll probably make me very tired!). Before you know it summer will be over and I'll be able to sign up for ASL classes while the kids are at school or in the evening. Geri, have you been able to locate resources in your area? You might search for support groups in your area. Your local community center or health care provides may be able to assist you in finding resources. Keep on reaching out!

06-23-2009, 12:11 PM	#238 (permalink)
Chie Seoung Registered User Join Date: Jun 2009 Posts: 17	Lost Hearing in 20s I lost my hearing suddenly in my mid 20s from ototoxicity (chemical deafness). I lost everything, literally, and if not for the community support I received... I am not sure where I would be. Now, years later, I lip read proficiently and, except for you wonderful mustached men, I get most of everything said to me. I can hear certain sounds and at times my hearing waivers and I can hear a few more sounds... but nothing compared to real hearing as everything is distorted. I have an 800# where my messages from clients and coworkers are sent to a transcription company and then returned to me with my messages, Blackberry is my constant companion, and I also carry a small laptop with me where ever I go. Always. I use it in case I have a hard time reading someone. I work hard at socialization, constantly. I have become very touchy feely, which can put people off. I crave the contact that not hearing them has taken from me. Something I struggle with a lot is that I fear large crowds. I don't have anxiety problems, but it is very rare that I will go alone into a large crowd without a trusted friend with me. I prefer 2 to 3 person groups, at the most 4. My brain has been rewired for small groups, I think. I even notice when I am in text-based chat rooms, I can't seem to concentrate on the stream when it gets over a certain number of people. There are other struggles as well, of course, but I meet them as I go. My life is wonderful and full and I have to work for things, sure, but who doesn't? The pain at first can seem more than you can deal with perhaps, and I hope those born deaf understand my meaning... it is quite an upheaval and the human condition would predispose anyone to a period of mourning at having lost something so relied on. Don't ever be afraid or too proud to ask for help. We all need help from time to time. Love, Chie

06-23-2009, 01:14 PM	#239 (permalink)
JervisGermane Registered User Join Date: Jun 2009 Location: BRLA Posts: 4	I must say, it is very depressing to me to read these posts. I'm not completely deaf yet, but it looks more and more like it's about to happen. You all mention jobs, and "community support," which would be nice. I graduated from college two years ago and have spent every day since begging for the kind of work I went to school to avoid. I can't get hired at Wal-Mart or McDonald's because they have personality tests you must pass, and I can't. As for community support, I am living with my brother and father who tease me about my hearing loss, and my mother is too busy finishing a doctoral degree to help me at the moment. I'm working at a restaurant in a kitchen with a very loud oven/vent system, and my boss and coworkers are getting very tired of repeating themselves to me over and over. I don't read lips, and that doesn't help. I suffer from temporal lobe seizures which have the symptoms of various mood disorders - it was only recently diagnosed as such because for years the doctors thought I was mentally ill, until my symptoms grew so varied that they realized they couldn't be explained by a psychological disorder. I have been in and out of mental hospitals for years, including a criminal commitment resulting from a toxic reaction to a medication change. As a result, I can't pass a background check to get any kind of respectable job. My hearing loss isn't caused by any kind of chronic illness or hereditary condition. I had intermittent ear infections when I was young, and had so many operatons on my ears that the scar tissue is causing my eardrums to collapse. Everything seems hopeless right now.

06-23-2009, 01:50 PM	#240 (permalink)
dogmom Registered User Join Date: Feb 2009 Posts: 1,468	everybody and welcome again to chie, sallylou and Jervis, I was recently discovered to have hearing loss by husband's audi <husband oral- deaf w/o aids> and also have math-related LD <diagnosed in college, includes spatial orientation and sequencing difficulty> and may be having issues related to CAPD <that's part of why I had said in a post in a different section I was worried about new job>. I was born premature at 6 and 1/2 months and was labeled as having speech and language problems, I spoke late and used gestures/body language as a toddler. I am an extremely visual-tactile person and sign some ASL. My supervisor gets very tired and frustrated with my asking him to show me something and/or repeat something again and again - just because I hear something doesn't mean I process it. I just keep trying and I write things down. But I understand it is very challenging to continue trying. I am saddened to hear about the lack of family support, Jervis. I think it does make it more difficult - my mother, while loving and kind, does not believe I have LD and that I simply don't try. I understand. We have Deaf Coffees in my area too. Perhaps there is a local group <for the newcomers> like Late Deafened Association or Center for Deaf and hard of hearing.

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