DeafRaptor
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- Aug 3, 2011
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This is my first post. 
I have two reasons for this post, the first is introductions. I was born with mild to moderate bi-lateral hearing loss to a hearing family. I have two older brothers and a twin sister (who now has a little hearing loss, but doesn’t use hearing aids). I was mainstreamed in a private school. I was given hearing aids and a speech therapist and I learned to lip-read a little. I believe when we were little, the school taught us the ASL alphabet, but I apparently did not use it often enough and forgot about it until later. I also had my sister by my side, which I think was what helped me through my pre-college years. During elementary graduation, the teacher talked about each graduating person’s main attribute. They mentioned my skill of “getting excellent grades while never being on the same page”. My sister graduated top of our class in high school and I was second. My hearing loss continued to decline. In college, with my sister still by my side, I was given other accommodations to include CART and note-taking. I felt bad about accepting those accommodations and I thought maybe they were for other people, otherwise, why wouldn't they have offered those to me before. I also learned (relearned?) about ASL & about Deaf Culture. It was a brand-new, trial program at the university and I took all the classes I could. My sister also took the ASL & Deaf Culture courses and we signed on and off together. I also hung out with the small Deaf Community there, but they didn’t meet often. I graduated and did extremely well for myself. I moved to Washington, DC and got a job with the Federal Government and have been working with the Government for the last five years. I should note that my sister did not accompany me. My hearing loss now starts at moderate, but is mostly in the severe/profound range. I was shocked when I learned how many sounds I had not been catching even with brand-new digital hearing aids, since previously my sister had been there to tell me about an alarm, the door, or phone, etc. I have overslept, burnt food, missed visitors and callers, etc, which are all important to me. I also cannot locate the source of a sound that I do hear with or without hearing aids. Rather than buy a ton of technology to cover all the sounds, I learned about hearing service dogs, but thought those were for other people since my hearing loss wasn't completely under 65 db as some programs require. Nevertheless, I adopted a dog, Leah, and found a local dog trainer to help me train her to alert me to sounds. After mastering her third sound alert, the trainer certified Leah, but I still feel guilty about bringing her out to public since I did most of the training rather than an "official program" and her "manners" are not perfect (no disturbances, just things like passive begging rather than ignoring other people, etc). That's the back-story.
Now I will talk about the main reason for this post. I have heard many stories about kids with new hearing aids who lose them on purpose and about late-deafened elderly people who refuse hearing aids. Those stories have been told by hearing people who try to say those stories are about a young child’s defiance or an older person’s denial. Then they go on to say hearing aids work better now and everybody with a hearing loss should get them; “there’s no reason not to”. I also know that there are people, who have lost all of their hearing (“ear died”) over time and gave up hearings aids, but then the previous people would try to get them to get CIs, but that’s a different story (I would never get CIs or any other hearing-assisting surgery as I see hearing loss as not life-threatening and those surgeries as unnecessary). The hearing world had taught me that it’s important to do all the work it requires as a deaf person to try to be hearing, so that I could communicate with them rather than expect everyone else to work hard to try to communicate with me (I know now this is an unrealistic, unfair view). Now I know there are other options and I am not so sure what to do. If a person looked at my audiogram, they would see that I am in the middle/lower area (it’s a slope for me), rather than the top (not yet need HAs) or bottom (HAs not really useful anymore). So there is still a little benefit for me from hearing aids for communication (not just ambiance noises). However, my ears are always bothering me (itchy, painful, ear infections, etc) from wearing the hearing aids all day to communicate, even though I try taking them out from time to time to let my ears “breathe”. I have expensive, digital hearing aids that tried to bring my specific hearing loss up to 0 db for each frequency, but that means I hear all of the background noises (humming from A/Cs & computers, dogs barking, nail clippers). I find that I cannot block any of those noises out; it feels like the noises are grinding and pounding against my brain.
I have had lot of migraines over the years, sometimes daily, from that. If conversation is going on in noise, I hear all the sounds (to a degree) and have to consciously determine which is noise and which is speech. There are programs on my hearing aids to help limit the background noise, but I can no longer understand speech and it is very disorienting when I use those programs. I only catch a little speech with my hearing aids, a little with my limited skill with lip-reading, a little more with my skill with mad-libs (fill in the blanks – still can turn out as funny as mad-libs). And I cannot even follow one conversation if another one is going on at the same time. It’s a lot of work and very exhausting and stressful. So much so, that at times I find myself no longer listening or at least no longer asking them to repeat, since in previous experiences people have gotten frustrated and said “never mind” (no matter the kind thoughts here, that’s never going to change). I will admit that I have gotten very depressed and so stressed that I cried because of it. 
Some of the problems I have been having, an audiologist would say I need a second hearing aid and that would fix it. However, I have bi-lateral hearing loss and ALREADY use TWO hearing aids, so do I buy a third?
I have always been told by hearing people what to think about my hearing loss. I am trying to find my place in the world (am I hard of hearing or deaf) and I thought here would be a good place to get another view, so I can take both sides and make up my own mind.
I am wondering if I should phase out my hearing aids. I also think that, while I may use it from time to time, I would phase out my voice too as it is almost “perfect” (other than the rare stutter that seemed to have developed recently); people assume my hearing is perfect and when I tell them otherwise, they say “oh I didn’t know” or “I would not have guessed” (thanks a lot to the speech therapist-hearing people may be able to understand me, but it’s harder for me to understand them). I am also curious about other people’s experiences with giving up on hearing aids (before the HAs lost all their usefulness) and going all ASL, if there any here, and how you decided. Sorry for the long post 
and thanks in advance for replies. 
I have two reasons for this post, the first is introductions. I was born with mild to moderate bi-lateral hearing loss to a hearing family. I have two older brothers and a twin sister (who now has a little hearing loss, but doesn’t use hearing aids). I was mainstreamed in a private school. I was given hearing aids and a speech therapist and I learned to lip-read a little. I believe when we were little, the school taught us the ASL alphabet, but I apparently did not use it often enough and forgot about it until later. I also had my sister by my side, which I think was what helped me through my pre-college years. During elementary graduation, the teacher talked about each graduating person’s main attribute. They mentioned my skill of “getting excellent grades while never being on the same page”. My sister graduated top of our class in high school and I was second. My hearing loss continued to decline. In college, with my sister still by my side, I was given other accommodations to include CART and note-taking. I felt bad about accepting those accommodations and I thought maybe they were for other people, otherwise, why wouldn't they have offered those to me before. I also learned (relearned?) about ASL & about Deaf Culture. It was a brand-new, trial program at the university and I took all the classes I could. My sister also took the ASL & Deaf Culture courses and we signed on and off together. I also hung out with the small Deaf Community there, but they didn’t meet often. I graduated and did extremely well for myself. I moved to Washington, DC and got a job with the Federal Government and have been working with the Government for the last five years. I should note that my sister did not accompany me. My hearing loss now starts at moderate, but is mostly in the severe/profound range. I was shocked when I learned how many sounds I had not been catching even with brand-new digital hearing aids, since previously my sister had been there to tell me about an alarm, the door, or phone, etc. I have overslept, burnt food, missed visitors and callers, etc, which are all important to me. I also cannot locate the source of a sound that I do hear with or without hearing aids. Rather than buy a ton of technology to cover all the sounds, I learned about hearing service dogs, but thought those were for other people since my hearing loss wasn't completely under 65 db as some programs require. Nevertheless, I adopted a dog, Leah, and found a local dog trainer to help me train her to alert me to sounds. After mastering her third sound alert, the trainer certified Leah, but I still feel guilty about bringing her out to public since I did most of the training rather than an "official program" and her "manners" are not perfect (no disturbances, just things like passive begging rather than ignoring other people, etc). That's the back-story.Now I will talk about the main reason for this post. I have heard many stories about kids with new hearing aids who lose them on purpose and about late-deafened elderly people who refuse hearing aids. Those stories have been told by hearing people who try to say those stories are about a young child’s defiance or an older person’s denial. Then they go on to say hearing aids work better now and everybody with a hearing loss should get them; “there’s no reason not to”. I also know that there are people, who have lost all of their hearing (“ear died”) over time and gave up hearings aids, but then the previous people would try to get them to get CIs, but that’s a different story (I would never get CIs or any other hearing-assisting surgery as I see hearing loss as not life-threatening and those surgeries as unnecessary). The hearing world had taught me that it’s important to do all the work it requires as a deaf person to try to be hearing, so that I could communicate with them rather than expect everyone else to work hard to try to communicate with me (I know now this is an unrealistic, unfair view). Now I know there are other options and I am not so sure what to do. If a person looked at my audiogram, they would see that I am in the middle/lower area (it’s a slope for me), rather than the top (not yet need HAs) or bottom (HAs not really useful anymore). So there is still a little benefit for me from hearing aids for communication (not just ambiance noises). However, my ears are always bothering me (itchy, painful, ear infections, etc) from wearing the hearing aids all day to communicate, even though I try taking them out from time to time to let my ears “breathe”. I have expensive, digital hearing aids that tried to bring my specific hearing loss up to 0 db for each frequency, but that means I hear all of the background noises (humming from A/Cs & computers, dogs barking, nail clippers). I find that I cannot block any of those noises out; it feels like the noises are grinding and pounding against my brain.
I have had lot of migraines over the years, sometimes daily, from that. If conversation is going on in noise, I hear all the sounds (to a degree) and have to consciously determine which is noise and which is speech. There are programs on my hearing aids to help limit the background noise, but I can no longer understand speech and it is very disorienting when I use those programs. I only catch a little speech with my hearing aids, a little with my limited skill with lip-reading, a little more with my skill with mad-libs (fill in the blanks – still can turn out as funny as mad-libs). And I cannot even follow one conversation if another one is going on at the same time. It’s a lot of work and very exhausting and stressful. So much so, that at times I find myself no longer listening or at least no longer asking them to repeat, since in previous experiences people have gotten frustrated and said “never mind” (no matter the kind thoughts here, that’s never going to change). I will admit that I have gotten very depressed and so stressed that I cried because of it. Some of the problems I have been having, an audiologist would say I need a second hearing aid and that would fix it. However, I have bi-lateral hearing loss and ALREADY use TWO hearing aids, so do I buy a third?I have always been told by hearing people what to think about my hearing loss. I am trying to find my place in the world (am I hard of hearing or deaf) and I thought here would be a good place to get another view, so I can take both sides and make up my own mind.
I am wondering if I should phase out my hearing aids. I also think that, while I may use it from time to time, I would phase out my voice too as it is almost “perfect” (other than the rare stutter that seemed to have developed recently); people assume my hearing is perfect and when I tell them otherwise, they say “oh I didn’t know” or “I would not have guessed” (thanks a lot to the speech therapist-hearing people may be able to understand me, but it’s harder for me to understand them). I am also curious about other people’s experiences with giving up on hearing aids (before the HAs lost all their usefulness) and going all ASL, if there any here, and how you decided. Sorry for the long post and thanks in advance for replies. 
Esp., after I joined this board. It seems like every web site has its own lingo. I love urban dictionary! 
When I had analog HAs growing up, I used to put the volume ALL the way up. I put up with the discomfort because I craved communication, which I couldn't quite get (early HAs didn't have many bands to adjust to my hearing loss). Then with the digital, they were able to better map the HAs to my audiogram, but the noise got worse and I was turning the volume ALL the way down. Even trying the different programs available with my digital HAs (which were definitely cool at first) just gave me the option of either comfort OR communication. For almost two years and many visits (luckily visits were free after purchasing hearing aids) we tried and we couldn't seem to find something where I could have both. There didn't seem to be a Venn Diagram equivalent where both some comfort and some communication intercepted. If not for ASL, I would put up with the discomfort even longer because I do value communication.
What a difference! I feel more like a normal person and less like a broken hearie.