Hello from NYC

melissaamd1

melissaamd1

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Hi all, My name is Melissa. I have been living with hearing loss my whole life. I found out on Friday that I now have progressed to profound hearing loss. I had surgery as a child, tubes in the eardrums, many many ear infections, otosclerosis, stapedectomies in both ears in high school. I got my first CIC aid at age 22, second one at 25, larger aids but still small( I forget the abreviation right now sorry) at 30, updated at 34 because I told my audiologist I wanted to hear my child when she was born. Now went to see a new audiologist on Friday. I loved her. My old aud. was keeping me in the dark, letting me walk around with HA that I cannot even hear with. I also suffer from sever tinnitus. I asked him why it has become louder, he told me to come back in Jan. for a new hearing test. My father brought me to his aud. who spent over two hours explaining my mixed hearing loss to me, how to read an audiogram, what a cochlear implant does, how I am hearing now with these aids I have (missing all mid-frequency, SPEECH). I have been walking around thinking my tinnitus has gotten worse. Not that, my aids now are doing nothing for me. That is why my tinnitus is so obvious. I am really lip reading and using cognitive ability to "hear", not hearing as I thought. I completely failed speech portion of hearing test. Scored a zero. We palyed a game afterwards, I could only "hear" the aud. if I could see her mouth speaking. Wow, I never knew I was so good at lip reading. I am 37 years old. I have a three year old child. Needless to say, although I have been living a working, just getting by "fooling" everyone about my hearing loss, I am devastated to hear that in as little as 3-7 years, I won't have any hearing left at all, even with the strongest hearing aids, as I've been recommended to get.
Any advice on how I can deal with this better emotionally? I vary between a crying mess, knowing in a few years no more child's voice, family, music, etc. and I also try to function normally ignoring the issue just waiting to get the new aids and hoping my hearing lasts longer than less. However my new aud. said she has never seen such progression so quickly and she has 80+patients with my results, not 37year old women.She recommended the Seimens Pheonix BTE. Any recomendations re: hearing aids and how do I live would be appreciated. Thank you.Hugs:confused::tears:
 
Hi,

I am sorry to read about your hearing loss. I think perhaps you might need to find a different forum to deal with your issue, though- you brought up Cochlear Implants- although I am not deaf myself, I know that cochlear implants are pretty taboo among the deaf, and most will be offended that you brought it up. It goes against deaf culture/beliefs people thinking that their lack of hearing needs to be fixed- it doesn't.

I understand that you are approaching this from late onset deafness point of view, and thus are experiencing a great loss and change in lifestyle- a different situation from someone who was born deaf or went deaf early in life. Only you can make the decision on whether or not to vamp up your hearing aids or get the cochlear (getting the cochlear will likely make you unwelcome in the deaf community if becoming a part of it is your eventual goal for support).

My only suggestion for you is to begin learning ASL immediately regardless of what you choose to do, and purchase Signing Time or other teaching equivalent for children. Your family should learn to sign as you learn to sign, to make communicating with you as your hearing loss progresses an easier transition with minimal frustrations.

If you are interested in the DVDs PM me, I have a Baby Signing Time DVD you can have as I already know the signs on it, it will be fun to learn with your three year old.
 
btw pm me for my e-mail if you want to talk. I am hearing, but am willing to listen/text if you want.
 
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Hi,

I am sorry to read about your hearing loss. I think perhaps you might need to find a different forum to deal with your issue, though- you brought up Cochlear Implants- although I am not deaf myself, I found out from someone I used to know awhile back, that the deaf community shunned her after she got cochlear implants-, and a boy in my ASL class this semester who got the CI recounted a similar story to the class. I only answered your question because no one else had and I didn't want it to go unanswered because it was important.

I understand that you are approaching this from late onset deafness point of view, and thus are experiencing a great loss and change in lifestyle- a different situation from someone who was born deaf or went deaf early in life. Only you can make the decision on whether or not to vamp up your hearing aids or get the cochlear (getting the cochlear will likely make you unwelcome in the deaf community if becoming a part of it is your eventual goal for support).

My only suggestion for you is to begin learning ASL immediately regardless of what you choose to do, and purchase Signing Time or other teaching equivalent for children. Your family should learn to sign as you learn to sign, to make communicating with you as your hearing loss progresses an easier transition with minimal frustrations.

If you are interested in the DVDs PM me, I have a Baby Signing Time DVD you can have as my sister already knows the signs on it, it will be fun place to start and learn with your three year old.

Also, apparently this website has some teaching tools, too.
 
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educatedguess said:
Hi,

I am sorry to read about your hearing loss. I think perhaps you might need to find a different forum to deal with your issue, though- you brought up Cochlear Implants- although I am not deaf myself, I know that cochlear implants are pretty taboo among the deaf, and most will be offended that you brought it up. It goes against deaf culture/beliefs people thinking that their lack of hearing needs to be fixed- it doesn't.

I understand that you are approaching this from late onset deafness point of view, and thus are experiencing a great loss and change in lifestyle- a different situation from someone who was born deaf or went deaf early in life. Only you can make the decision on whether or not to vamp up your hearing aids or get the cochlear (getting the cochlear will likely make you unwelcome in the deaf community if becoming a part of it is your eventual goal for support).

My only suggestion for you is to begin learning ASL immediately regardless of what you choose to do, and purchase Signing Time or other teaching equivalent for children. Your family should learn to sign as you learn to sign, to make communicating with you as your hearing loss progresses an easier transition with minimal frustrations.

If you are interested in the DVDs PM me, I have a Baby Signing Time DVD you can have as I already know the signs on it, it will be fun to learn with your three year old.
Click to expand...

HUH?!?!?!? Sorry but the CI debate isn't THAT extreme. This is 2011, not 1990!!!!!
But I second the suggestion to learn ASL etc. It's a lot of fun...and you'll meet a lot of other young dhh folks in the Deaf community.
 
educatedguess said:
Hi,

I am sorry to read about your hearing loss. I think perhaps you might need to find a different forum to deal with your issue, though- you brought up Cochlear Implants- although I am not deaf myself, I know that cochlear implants are pretty taboo among the deaf, and most will be offended that you brought it up. It goes against deaf culture/beliefs people thinking that their lack of hearing needs to be fixed- it doesn't.
Click to expand...

Cochlear implants are not taboo subjects among the deaf. There's an entire forum devoted to the subject here on AD and quite a few members with CIs and with family members who use CIs. Every person with a cochlear implant just happens to be deaf :) . Many are fluent in ASL and are a part of Deaf culture. It doesn't "go against deaf culture/beliefs" to use a hearing aid, a cochlear implant, or for that matter, any other tool such as a cellphone or computer to text, to write, or otherwise to communicate.

Anyone who understands what a cochlear implant is and does knows that a CI doesn't "fix" being deaf (whatever that might mean), but is a technology, a tool used by some who are deaf to access sounds.
 
educatedguess said:
Hi,

I am sorry to read about your hearing loss. I think perhaps you might need to find a different forum to deal with your issue, though- you brought up Cochlear Implants- although I am not deaf myself, I know that cochlear implants are pretty taboo among the deaf, and most will be offended that you brought it up. It goes against deaf culture/beliefs people thinking that their lack of hearing needs to be fixed- it doesn't.

I understand that you are approaching this from late onset deafness point of view, and thus are experiencing a great loss and change in lifestyle- a different situation from someone who was born deaf or went deaf early in life. Only you can make the decision on whether or not to vamp up your hearing aids or get the cochlear (getting the cochlear will likely make you unwelcome in the deaf community if becoming a part of it is your eventual goal for support).

My only suggestion for you is to begin learning ASL immediately regardless of what you choose to do, and purchase Signing Time or other teaching equivalent for children. Your family should learn to sign as you learn to sign, to make communicating with you as your hearing loss progresses an easier transition with minimal frustrations.

If you are interested in the DVDs PM me, I have a Baby Signing Time DVD you can have as I already know the signs on it, it will be fun to learn with your three year old.
Click to expand...

I would suggest you just sit and read the forum and not start giving advice to the deaf when you are a hearing person who just got here. You don't have any idea what you are talking about.
 
melissaamd1 said:
Hi all, My name is Melissa. I have been living with hearing loss my whole life. I found out on Friday that I now have progressed to profound hearing loss. I had surgery as a child, tubes in the eardrums, many many ear infections, otosclerosis, stapedectomies in both ears in high school. I got my first CIC aid at age 22, second one at 25, larger aids but still small( I forget the abreviation right now sorry) at 30, updated at 34 because I told my audiologist I wanted to hear my child when she was born. Now went to see a new audiologist on Friday. I loved her. My old aud. was keeping me in the dark, letting me walk around with HA that I cannot even hear with. I also suffer from sever tinnitus. I asked him why it has become louder, he told me to come back in Jan. for a new hearing test. My father brought me to his aud. who spent over two hours explaining my mixed hearing loss to me, how to read an audiogram, what a cochlear implant does, how I am hearing now with these aids I have (missing all mid-frequency, SPEECH). I have been walking around thinking my tinnitus has gotten worse. Not that, my aids now are doing nothing for me. That is why my tinnitus is so obvious. I am really lip reading and using cognitive ability to "hear", not hearing as I thought. I completely failed speech portion of hearing test. Scored a zero. We palyed a game afterwards, I could only "hear" the aud. if I could see her mouth speaking. Wow, I never knew I was so good at lip reading. I am 37 years old. I have a three year old child. Needless to say, although I have been living a working, just getting by "fooling" everyone about my hearing loss, I am devastated to hear that in as little as 3-7 years, I won't have any hearing left at all, even with the strongest hearing aids, as I've been recommended to get.
Any advice on how I can deal with this better emotionally? I vary between a crying mess, knowing in a few years no more child's voice, family, music, etc. and I also try to function normally ignoring the issue just waiting to get the new aids and hoping my hearing lasts longer than less. However my new aud. said she has never seen such progression so quickly and she has 80+patients with my results, not 37year old women.She recommended the Seimens Pheonix BTE. Any recomendations re: hearing aids and how do I live would be appreciated. Thank you.Hugs:confused::tears:
Click to expand...
I am putting up a link for a thread , that you should read through. We have several people here in your situation, and you can get lots of advice and help from them. Good luck to you.
http://www.alldeaf.com/our-world-our-culture/62953-adjustment-late-onset-deafness.html
 
I had a deaf friend awhile back who got cochlear implants and a LOT of her "friends" from deaf community stopped talking to her because of it.

So that is the memory I was drawing on when I said that. Excuse me if things have now changed.
 
Bottesini said:
I would suggest you just sit and read the forum and not start giving advice to the deaf when you are a hearing person who just got here. You don't have any idea what you are talking about.
Click to expand...

I did sit and read the forums for hours yesterday- and you're right- I did just get here, and I only know what I have been told from Deaf people I have encountered over the years, as well as from my DEAF instructor who made lesson 1 the first day of class be about how Cochlears suck etc etc.
 
I have a Cochlear Implant. My story is not all that different from yours. My loss was progressive to the point that Hearing Aids no longer help. I am fluent in ASL, I have good speech (and writing skills but you cannot tell that from reading my replies can you?), I am accepted in the Deaf community in my area. I do encourage you to read the forms here, ask questions. If you need someone with a similar story to ask questions to, you can PM me any time.

I encourage you to learn ASL with a family member. Perhaps even a friend or two. Take some time to learn as much as you can and once you are comfortable, you can then decide if you want to get a CI. There are Pro and Con with a CI. so, once again, PM me if you are nervous about asking questions here.

Oh, Welcome to AD! We are happy to have you here! :D
 
educatedguess said:
I did sit and read the forums for hours yesterday- and you're right- I did just get here, and I only know what I have been told from Deaf people I have encountered over the years, as well as from my DEAF instructor who made lesson 1 the first day of class be about how Cochlears suck etc etc.
Click to expand...

:hmm: A whole day? And an ASL class with a "DEAF" instructor??

Okay then. I guess you know it all! :D
 
:welcome: to AllDeaf forum. You have a lot to learn about deaf perspectives here. So I hope you enjoy reading and posting all the threads here. See you around here. :wave:
 
Cheetah said:
I have a Cochlear Implant. My story is not all that different from yours. My loss was progressive to the point that Hearing Aids no longer help. I am fluent in ASL, I have good speech (and writing skills but you cannot tell that from reading my replies can you?), I am accepted in the Deaf community in my area. I do encourage you to read the forms here, ask questions. If you need someone with a similar story to ask questions to, you can PM me any time.

I encourage you to learn ASL with a family member. Perhaps even a friend or two. Take some time to learn as much as you can and once you are comfortable, you can then decide if you want to get a CI. There are Pro and Con with a CI. so, once again, PM me if you are nervous about asking questions here.

Oh, Welcome to AD! We are happy to have you here! :D
Click to expand...

We all hate Cheetah because he has a CI.

Just kidding! Of course many deaf people with CIs are part of the Deaf community. :)

welcome to AD!
 
Welcome to AD! I recommend you check the LD thread, even though I've no experience in being LD but I've heard it's great!! People on this forum, don't really care much for our hearing status or what hearing equipment we have but they do not define who we are!! We *most of us* do get along!!
 
To, OP. There is a meet for HOH, Deaf, and students who want to learn ASL. If you want to come to a meetup, check it out at meetup.com. Every fridays its at a barnes & nobles by union square. I went two weeks ago. The name of the group is The New York American Sign Language group. If you want someone to learn ASL with then PM me or hit me up on Skype. Later.
 
Hi Everyone. It's Melissa. Thanks to everyone who took the time to respond to me. I tried checking the site and didn't sse my post, so I thought it didn't post at all and that I typed all that for nothing, lol! I really appreciate everyone's response. If you have severe-profound hearing loss, and noone else in your life does, then you know how it feels to try to explain what you go through/deal with and have them say they can't imagine, and they don't. I really feel so alone and I am thankful to those of you who reached out.
Educatedguess: I didn't mean to offend anyone who is deaf, who was born deaf, who became or is deaf for any reason by bringing up CI's. I just feel completely lost sometimes and don't know where to turn, so in internet searching, I found this site and decided to reach out to see if someone would reach back. If you have normal healthy hearing, you can't possibly know what I am feeling. I am very sorry if I offended anyone by bringing up this topic. Right now I am really not hearing anything, even with the hearing aids I wear, so I DO consider myself deaf at this moment. If you have to have headphones in a hearingtest turned up to over 100db to HEAR a word, and not even understand it, then you let me know if you consider that "hearing". I have "mixed" hearing loss. This is nerve damage and I also have severe tinnitus and had stapedectomies in both ears when I was in highschool for otosclerosis. I went to see my ENT, who did the surgeries in highschool, he asked, "Why did this happen so quickly?", when he looked at my audiogram. I wish I could answer him, but why do many things happen in life? We don't know, we just have to go with the flow, right? Which is why I am on here, which is what I am trying to do. I AM going to have to get the most powerful hearing aids, two recent visits to two different audi.'s, they have both told me. I WILL be deaf in a short time, so I am just trying to se what my options are to get the most out of life. I do own all the Signing TIme DVD's. My sister got them as a gift for me and my daughter when she was born. I started crying one morning about 3weeks ago. My daughter climbs into bed with me around 5am, she woke up and woke me up and signed, "I'm awake." I knew what she meant form the DVD's. It just touched me that someone who is just 3years old understands already.
I DO plan on learning ASL. I have already looked into a school in NYC and plan on starting in Jan.
If I decide that CI's are not for me based on what I learn on this journey until I lose all my natural hearing (only about 20% left as it is now) then I will be living my life deaf. CI's don't offer total round the clock complete normal hearing that you, EducatedGuess have the luxury of having. They offer something completely different, and when I shower, swim, sleep, remove them, I will still be deaf.
It does not seem that I offended anyone here that is deaf, even those who were born that way. It seems that you were worried that I would offend them, and yet you are hearing, you have more than I do, so why worry about me?
Anyway, thank you again everyone. I really appreciate all the advice and I am on the path on a new chapter in my life.
 
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