I’m late deafened and find myself not being able to identify with either hearing or deaf world. Anyone else feel the same? Trying to find my place.

JanieM

JanieM

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I’m new to the forum and reaching out. I would love to hear your stories on how you deal with being caught between the hearing and deaf worlds. I’m late deafened. I’ve been hard of hearing for 15 years but the last 6 years I have Proufound hearing loss (110dB). I no longer fit in with the hearing community and struggle with communication. I read lips but it’s very difficult. Even when I explain that I can’t hear and they have to face me when they talk they still move around too much, put their hands near their lips or turn away mid sentence. It becomes quite frustrating and to be honest very very exhausting. It always surprises me how many people will just carry on a conversation with someone else not considering the fact that I can’t hear and can’t follow what is being said. I know people don’t do this on purpose or to be mean but I really feel excluded and alone when this happens. I have been signing for 3 years now but don’t have anyone to sign with so I find that frustrating as well. My husband is learning so that is wonderful. But outside of that my world has become so much smaller. I feel like I’m stuck between hearing and deaf worlds. Not really belonging to either. It’s quite a horrible feeling. I would love to hear if anyone has had the same circumstances and how you dealt with being caught in the middle. Thanks in advance!
 
Have had progressive Hearing loss all my life ( Now Severe to Profound). Get along fairly well with Super power Hearing Aids but have my moments. Have you considered high power hearing aids or possibly a cochlear implant. I do understand & the strangest thing is sometimes I wish L had been born all the way Deaf instead of this limbo land.
 
C-NICE said:
Have had progressive Hearing loss all my life ( Now Severe to Profound). Get along fairly well with Super power Hearing Aids but have my moments. Have you considered high power hearing aids or possibly a cochlear implant. I do understand & the strangest thing is sometimes I wish L had been born all the way Deaf instead of this limbo land.
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Thanks C-NICE for your reply. It’s always comforting to know I’m not alone out there. Limbo land is a good analogy. I do have the highest powered BTE that’s out there but find sometimes they just create kaos especially in noisy environments. My cognitive speech is low so even using my aids it’s still difficult communicating.
 
I can function with my Hearing Aids. Use the phone (Cell phone with the volume all the way up), TV (Higher volume) but not without. Restaurants, Church (different story). Movies with doubly stereo at the Cineplex ok.
 
I don’t use the phone at all, I can’t hear even with my aids and using a streamer. I have to use CC when watching TV or movies. When going out in public like restaurants and church I usually turn off my aids because it’s just loud kaotic noise that I can’t make sense out of. I have to focus quite intently at what people say to me. It’s quite exhausting.
 
Have you tested for a Cochlear Implant. I have, they said I'm borderline but not there yet.
 
No I haven't done testing for CI. Here in Canada they are $25,000 and up. They pay for kids but not adults.
 
Janie, I am at that place in my life - I call it "sitting on the fence." I don't belong to one side or the other. However, I am getting a CI very soon. We are just waiting on Blue Cross approval, then the surgery date will be set. All is ready.....

Caught in the middle, not really belonging to either the deaf or the hearing world, is a difficult place, at least is has been for me. I am almost 61 and have always been hearing. I began losing it a few years ago with Meniere's Disease.

I now have peace, but it took me awhile to get there. When I finally realized, 100 percent, that I really wanted a CI, then the peace came. I think "sitting on the fence" makes it difficult to have peace. I am sorry you are going through this, I know it is discouraging.

I don't know anything about Canada or other places outside the USA regarding CI's. From how you describe your hearing loss, I am pretty sure you would be eligible for a CI here in the USA.

If a CI is not feasible, are there any meetings for the deaf and the hard of hearing in your region? Where I live, we have meetings in restaurants, at coffee shops, etc. We also have a church for the deaf in our area. And numerous churches have ASL interpreters. I would put all of my energies into getting support, be it local or on the internet.

If I had been told I was not eligible for a CI, due to something showing up abnormal on the MRI, etc., finances, health, etc., then I would have sought out friendship, support, etc. among people like me. And I think I would have been happy with that, for then I would know my place in life. I do totally understand not knowing where you belong or where your place is in life. I hope you can find peace soon.
 
JanieM said:
I’m new to the forum and reaching out. I would love to hear your stories on how you deal with being caught between the hearing and deaf worlds. I’m late deafened. I’ve been hard of hearing for 15 years but the last 6 years I have Proufound hearing loss (110dB). I no longer fit in with the hearing community and struggle with communication. I read lips but it’s very difficult. Even when I explain that I can’t hear and they have to face me when they talk they still move around too much, put their hands near their lips or turn away mid sentence. It becomes quite frustrating and to be honest very very exhausting. It always surprises me how many people will just carry on a conversation with someone else not considering the fact that I can’t hear and can’t follow what is being said. I know people don’t do this on purpose or to be mean but I really feel excluded and alone when this happens. I have been signing for 3 years now but don’t have anyone to sign with so I find that frustrating as well. My husband is learning so that is wonderful. But outside of that my world has become so much smaller. I feel like I’m stuck between hearing and deaf worlds. Not really belonging to either. It’s quite a horrible feeling. I would love to hear if anyone has had the same circumstances and how you dealt with being caught in the middle. Thanks in advance!
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Hello Janie I am new myself. I want to help . Do you know what a cochlear bone Achord device Baha processor? I have one on my right ear my left is a little better but I would like to learn to sign because for future purposes . Anyway the Baha 4 speakers in side the processor that attaches to the Baha hub that is put in the mastoid bone . It is the abutment that the processor snaps in place. I do not know the extend of your hearing lost but to get the Baha you have to have not sure of the percentage I think is over 60% like me and I think you would be a candidate ( not sure) but if you were and gotten one for left and right you would hear really good. I just have the one and I can hear really well with it . It has 4 microphones in each processor . The audiologist has to set the device . I actually has one of the previous Baha bp 100 baha3 I amtryinh to sell since I was upgraded . I am going to mention it on this forum. Also if you can read lips that helps a lot . However, keep your chin up , do not let this knock you down . You can do anything in this world that you want to . God we help you . I never let this make me different than anyone else and I am back in school and I am older . Keep smiling , praying their are people who do understand and the people who do not understand do not let them make you feel like you do not belong or different it is them . I never worry about what people are saying because no one knows with the other is going through . Let me know if I can help in any way . Martina
 
Wow!! Thank you so much Martina for taking the time to write that! It really is very much appreciated. That was really nice. Good luck returning to school.
 
rosecottage said:
Janie, I am at that place in my life - I call it "sitting on the fence." I don't belong to one side or the other. However, I am getting a CI very soon. We are just waiting on Blue Cross approval, then the surgery date will be set. All is ready.....

Caught in the middle, not really belonging to either the deaf or the hearing world, is a difficult place, at least is has been for me. I am almost 61 and have always been hearing. I began losing it a few years ago with Meniere's Disease.

I now have peace, but it took me awhile to get there. When I finally realized, 100 percent, that I really wanted a CI, then the peace came. I think "sitting on the fence" makes it difficult to have peace. I am sorry you are going through this, I know it is discouraging.

I don't know anything about Canada or other places outside the USA regarding CI's. From how you describe your hearing loss, I am pretty sure you would be eligible for a CI here in the USA.

If a CI is not feasible, are there any meetings for the deaf and the hard of hearing in your region? Where I live, we have meetings in restaurants, at coffee shops, etc. We also have a church for the deaf in our area. And numerous churches have ASL interpreters. I would put all of my energies into getting support, be it local or on the internet.

If I had been told I was not eligible for a CI, due to something showing up abnormal on the MRI, etc., finances, health, etc., then I would have sought out friendship, support, etc. among people like me. And I think I would have been happy with that, for then I would know my place in life. I do totally understand not knowing where you belong or where your place is in life. I hope you can find peace soon.
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Hi Rose, thank you so much for writing from your heart. Unfortunately, we live over an hour away from any major centre so there isn't a deaf organization or meeting that I can join and I think that has added to my struggle. Knowing that I don’t have a place to fit that’s close to me. That’s one of the reasons I’ve reached out to ALLDeaf to try to see what others have been through. It most definitely helps to read other people’s stories and successes and know that I’m not alone. Because that is exactly what I’ve been feeling. Even though I have a loving family who are trying their best to understand, I really think that people can’t truly know what it’s like unless they live it, same for all situations in life. If we don’t live it we don’t understand the daily struggles that can be in someone’s life. It’s uplifting to hear others reach out and it means so much to hear from those who have walked in the same (or similar) shoes. Thank you so much and all the best with your CI surgery.
 
Hi Janie,
I lost my hearing from meningitis when I was 18. I'm now 20. I don't sign or read lips. I've never worn a hearing aid. The audiologist said that they are not strong enough and my word recognition scores were super low. I tried for CI and didn't qualify. The meningitis did a real number on my ears and it's just not a viable option for me. I do feel your frustration. I didn't know until recently there is two worlds. Or even two different kinds of deaf (deaf and Deaf). Everything is new to me. It is so overwhelming. Do you experience anger and depression? I am trying to find out who I am now with this hearing loss. I am starting to learning some sign language now.
 
JanieM, I would actually consider moving to get closer to a Deaf community. It’s so important to me to at least occasionally meet people who understand.

For learning sign language, I recommend learning together with family and/or friends. It is important in order to get enough practice, and additionally learning sign helps them understand exactly how isolating it can be to have hearing loss. Another option, in my country, would be to go to the community college for the Deaf. It’s a place with a sign language environment, and they have interpreters programs, various programs for Deaf, and also a sign language program where you can study for one or two years. Since you actually live in a sign language environment, your progress is extremely fast, and you have good foundation for using interpreters and joining Deaf meetings. If you want to speed up your sign language learning, then you should try get into an environment where you can see and use sign language on a daily basis. Is it worth to put so much effort into learning? Well, for me it has been. I feel so much more secure knowing I have a (semi) efficient way to communicate. It has helped me feel more relaxed and included. When I use interpreters, I learn so many things I didn’t catch before, and even if it’s still isolating, I don’t feel it affects me as much as before I had sign language as a tool.

I looked around to see how people with hearing loss or deafness were feeling and coping, and it actually seemed that those who did know sign language were much more content and happy about their lives. Even if they still might struggle financially, they seem to have better connection to their family, since they can communicate, and a good social life.

It’s impossible to generalize, of course, and there are all sorts of issues that make it hard for an adult to learn to sign, but my own experience is that I do feel much happier and that it is worth the effort.
 
JanieM said:
I’m new to the forum and reaching out. I would love to hear your stories on how you deal with being caught between the hearing and deaf worlds. I’m late deafened. I’ve been hard of hearing for 15 years but the last 6 years I have Proufound hearing loss (110dB). I no longer fit in with the hearing community and struggle with communication. I read lips but it’s very difficult. Even when I explain that I can’t hear and they have to face me when they talk they still move around too much, put their hands near their lips or turn away mid sentence. It becomes quite frustrating and to be honest very very exhausting. It always surprises me how many people will just carry on a conversation with someone else not considering the fact that I can’t hear and can’t follow what is being said. I know people don’t do this on purpose or to be mean but I really feel excluded and alone when this happens. I have been signing for 3 years now but don’t have anyone to sign with so I find that frustrating as well. My husband is learning so that is wonderful. But outside of that my world has become so much smaller. I feel like I’m stuck between hearing and deaf worlds. Not really belonging to either. It’s quite a horrible feeling. I would love to hear if anyone has had the same circumstances and how you dealt with being caught in the middle. Thanks in advance!
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Hi Janie. I'm new here and reading your post for the first time. A few details aside, I could have written it.

I too spent most of my years into adulthood as a fully hearing person, then have had 25 years or progressive loss to the point that I'm basically deaf. Fully in one ear and I get by OK with a HA in the working ear. But still I pick up only 50% to 10 % of what someone is saying, depending on the person and environment. And it's getting worse. Conversations with most people who I am unfamiliar with consist of me saying, "Really? You don't say?" and things like that, and laughing (probably inappropriately) when it seems warranted.

I don't sign. No one to sign too. At 57 and having spent my entire life in the hearing world I just don't see any sort of transition to the Deaf world. Everything and everyone I know is in the hearing world.

No answers for you, but just a note to say I get it. My wife has been great about it through the years and (mostly) looks out for me in social situations, though she's not above calling me out later for any freakish responses I might have uttered. I like that too. Sometime we need a sense of humor about such things.
 
My situation is similar though I find I can use the phone if I use my computer and my Grady headphones. Expensive at $200 but they work!

As to not belonging? I've gotten used to not belonging anywhere. One must, at times.
 
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