My Song | Story of a girl stuck between the hearing and Deaf worlds

Bottesini said:
Yes. Just sitting there whining is not going to help, but we can't force him to stop.
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Yep. Putting verbs in sentences does no good unless one gets up off their butt and engages in the activity those verbs describe.
 
every family is different

BecLak said:
Of course every family is different, yet I can relate to the same frustrations she faced with other people. I have had people do that silly hand-wiggling at me when I started learning sign too. It's interesting that Ellen had been learning for 2 years. That's exactly the same time period for me right now.

Thanks AWS for sharing this. I am going to show it to my kids today.
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Yes Every family is different, Im sitting on fence Im TOTALLY Deaf, I mean TOTALLY, yes its rare but I am.

I Dont know much sign language at all, I lip read but its hard work, Im always falling out with people because they Dont see my point of view, That girl had hearing Aid and wasn't sure where she fitted? I have Nothing so where do I fit?

Im on anti depressants to help me.... there's a difference between TOTALLY and severe or profoundly even as I've been there, but now different world altogether....

You never see much for those who lose ALL as in TOTAL DEAFNESS, Maybe because there isnt many I Dont know..All I know is Im 1 of those..

I've often sat and wondered what their feelings are losing everything say at teenage years, everything to me seems to focus on Hearing Aids etc...I cant go anywhere without my partner, its so different...

Im not moaning, far from it :)
 
go further?

KristinaB said:
Gee, does this mean I should be sitting on a wall and doing nothing? I think not. Just because I am total deaf, does not mean I am a bump on a wall. I am a living viable human being whether I can hear or not. I am a productive member of society whether I can hear or not. There are certain limitations, to being total deaf, but they do not define me. It's called acceptance on your part. If you can accept yourself as you are, then you will be able to go farther in life as a happier person.
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What do you class as total deafness ? I went to special place for a week to help me accept, and its better now but still difficult.

KristinaB do you wear hearing aids ? or 1 whatever, By the way Im not moaning.

on my medical notes its gone on front of notes, Total deaf in L Ear, profoundly deaf R ear & Hearing Aid, Cochlear Implant failure. removed, now have red sticker from corner to corner stating Totally Deaf.Well that long time ago now.

So guess Consultant thinks there is differences as well. Im about to retire so furthest I can go is take holidays...Im very very happy person.

I just feel that Totally Deaf seem to be pushed aside...not me personally.
 
I just shared with my friends with that video a few days ago. It's fantastic story. :ty: AJWSmith.
 
Bottesini said:
Have you met KristinaB and drphil? You are not alone! :wave:
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I have spoken to DrPHIL before hearing journey, he knows about my problems that's for sure....

Please Im not moaning and negative, maybe i am!! But if you had been through what I have you might understand..but would take way to long to explain, honestly it would...
 
drphil said:
Well Botresini in the end how one's deals with the fact of becoming deaf is "up to you"-regress into passivity/helplessness vs trying to get a Cochlear Implant ( if suitable) OR learn ASL forthwith.
I have been bilateral deaf since December 20, 2006

As I understand my user name thoughts: Put verbs into your sentences. His Life Law #5

Implanted Sunnybrook/Toronto Advanced Bionics-Harmony activated Aug/07
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Errr drPhil Im the guy from hearing journey (CJ) I think you know about all my problems with ears, if it is you?? that forum a good forum it is as well..

The guy who has severe spasms in face, paralysis on side of face, 2 brain abscess operations 6 months in a coma TWICE over 8 years,Labrythectomies, Balance Nerve cut,1st person in Uk to have cavity built in ears,etc etc etc tinnitus in both ears, Totally deaf with Complete Obliteration in both ears, failed cochlear Implant, now been removed, rushed back because meningitis even after injection, averages 2 operations a year on ears since birth til present day, and my next trick Im having op on eye cause by ear and bells palsy Im having whole eye stitched up.....Now on anti depressants..

Oh lets be happy, heavens above I do try....

Surely I have room to speak my feelings....I just feel Totally Deaf people seem to be ignored....I know when CI is off you are DEAF, and if hearing aids are off you are Deaf, but when they are on difficult or not it helps...sadly I tried for CI so its still Nothing...Oh well

Sorry if seems like negatives, but heck I try.....no bitterness though.
 
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stueyyy said:
What do you class as total deafness ? I went to special place for a week to help me accept, and its better now but still difficult.

KristinaB do you wear hearing aids ? or 1 whatever, By the way Im not moaning.

on my medical notes its gone on front of notes, Total deaf in L Ear, profoundly deaf R ear & Hearing Aid, Cochlear Implant failure. removed, now have red sticker from corner to corner stating Totally Deaf.Well that long time ago now.

So guess Consultant thinks there is differences as well. Im about to retire so furthest I can go is take holidays...Im very very happy person.

I just feel that Totally Deaf seem to be pushed aside...not me personally.
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stueyyy If I understand you correctly (and correct me if I'm wrong!), you are comparing the fact that have lost all of your hearing next to the girl Ellen in the film who still has some hearing. And you are pointing out that at least she still has some hearing compared to yourself. And therefore she still has a choice, such as the choice to wear HAs. Is this right?

The point this film makes is that being able to hear sounds isn't good enough. To belong properly to the hearing world, you need to be able to follow a conversation in its entirety, and that is impossible for Ellen. I'm similar to Ellen in that I can hear sounds and music, but I cannot follow a conversation at a dinner table. I hear voices, but not words. One of the loneliest places to be is in a group of people you cannot understand or connect with. And one of our most fundamental needs as a human being is to be able to connect to other human beings. I do exercise my choice to wear my HAs every day (which I understand that you don't have), but this doesn't make me part of the hearing world. Do you see the point I'm making here? The pain Ellen (and I) feel is that we don't belong to a "tribe" either hearing or Deaf. This is a deep and different pain from not being able to hear sound. It's about belonging, a basic human need.
 
I also felt the pain as AWS and Ellen in the story. I did show it to my family (who are all hearing) and now they are accepting my choice to identify myself as Deaf, using Sign Language and voice off more now.
 
stueyyy said:
Im on anti depressants to help me.... there's a difference between TOTALLY and severe or profoundly even as I've been there, but now different world altogether....
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I think your forgetting what it like be Profoundly Deaf. Yes you MAY be able to hear something with hearing aids BUT most of sounds you hear are noise, they do not make sense, it impossible to pick out what words are and tell the difference from one word to another. Some profoundly Deaf can, it depends on the person.

I am profoundly Deaf and I can't tell from 1 sound from other sound, most of sounds are same to me. I can't tell if someone is speaking from someone is shouting or singing or it car, etc so there no way I can tell the words. Only sounds I know from my hearing aids is BANG cos it easy sound and it comes with vibration.
 
stueyyy said:
What do you class as total deafness ? I went to special place for a week to help me accept, and its better now but still difficult.

KristinaB do you wear hearing aids ? or 1 whatever, By the way Im not moaning.

on my medical notes its gone on front of notes, Total deaf in L Ear, profoundly deaf R ear & Hearing Aid, Cochlear Implant failure. removed, now have red sticker from corner to corner stating Totally Deaf.Well that long time ago now.

So guess Consultant thinks there is differences as well. Im about to retire so furthest I can go is take holidays...Im very very happy person.

I just feel that Totally Deaf seem to be pushed aside...not me personally.
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I do not wear hearing aids or have a CI. They will do nothing for me. I have no ear drums, no cochlea, and just recently found out, I am losing the bones in my ears as well. Everything is disappearing due to a freak of nature. I was born with calcium deposits in my ears that keep spreading and squeezing everything off. No surgery will help. I used to wear hearing aids from ages 7-10 and 38-41 (just double checked the dates and I was previously wrong). At just before my 43rd birthday, I lost all hearing. I am total deaf with zero residual hearing. I do not hear sonic booms, I do not hear rockets going off from Cape Canaveral, I do not hear the airplanes just 1 mile from home. There are a few of us here on AllDeaf that are total deaf with zero residual hearing.
 
Stueyyy: I am NOT DR PHIL. I have never heard of "hearing journey" (cj). Your condition is unknown to me. How I became deaf is entirely different-genetic/sensorineural.

My user name here drphil is the actual computer code to his website: drphil.com.

From reading various persons here as to the many different conditions which may make Cochlear Implants to a specific person "unsuitable" is backed by the experience at Sunnybrook/Toronto. Over the last 19 years they have rejected over 60% of all persons sent to them for consideration: Cochlear Implant. In the same time frame they implanted 850 persons of which I was one.Information given at a recent Implant patients meeting there.

Implanted A B Harmony activated Aug/07
 
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hiyi

AJWSmith said:
stueyyy If I understand you correctly (and correct me if I'm wrong!), you are comparing the fact that have lost all of your hearing next to the girl Ellen in the film who still has some hearing. And you are pointing out that at least she still has some hearing compared to yourself. And therefore she still has a choice, such as the choice to wear HAs. Is this right?

The point this film makes is that being able to hear sounds isn't good enough. To belong properly to the hearing world, you need to be able to follow a conversation in its entirety, and that is impossible for Ellen. I'm similar to Ellen in that I can hear sounds and music, but I cannot follow a conversation at a dinner table. I hear voices, but not words. One of the loneliest places to be is in a group of people you cannot understand or connect with. And one of our most fundamental needs as a human being is to be able to connect to other human beings. I do exercise my choice to wear my HAs every day (which I understand that you don't have), but this doesn't make me part of the hearing world. Do you see the point I'm making here? The pain Ellen (and I) feel is that we don't belong to a "tribe" either hearing or Deaf. This is a deep and different pain from not being able to hear sound. It's about belonging, a basic human need.
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So why did Consultants hand over Hearing Aids. because it helps you hear a wee bit better? I Dont belong to a tribe either "hearing or Deaf" I Acquired Total Deafness... yes I see point you making....BELONGING, phew I think that everyday, even went away on therapy sent by Consultant with LINK..born Deaf L ear loss of 90dB in right, had hearing aid, YES It helped me through for short time and it was bliss no matter how difficult.

Remember some are not just Born Totally Deaf they lose All later not late late but later or early TEENS.

No Hearing,no Communication, TV sub-titles that I Can barely read,or films with NO sub-titles no music that I used to love when young young, do I know BSL, hardly much at all, going into hospital twice a year since birth doesn't give me a lot of time, did start a course but after 4 weeks I was yep in hospital ear ops again..So didn't go back because there was no time.

People seem to think that Deaf (Totally) are born that way, so brought up in the Deaf Culture....WRONG!!! SO THAT PUTS ME AND OTHERS ON A FENCE...But we Dont have a choice, no H.A's no Cochlear s ....Please Dont take this the wrong way AJ.....Im not moaning old git Honest lol.
 
Totally Deaf

KristinaB said:
Yeah maybe so, but I still felt like I should validate myself, sorry. Maybe I came across too harsh. I have had now 5 years to get used to this being total deaf. Rockin Robin has had a lot longer and I think she's doing wonderfully well as well.
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How you become Totally Deaf Kristina? Im err 60 by the way, some get on nicely and glad to read they do, some like myself Dont like it much, not hearing grandchildren, people ignoring 1 etc etc etc.

So maybe I do sound negative, I've tried to get hearing back by having cochlear, but ended up having it extracted :-(

Im not going to explain but if you knew my Ears History you might understand why im kinda like this....
 
stueyyy said:
So why did Consultants hand over Hearing Aids. because it helps you hear a wee bit better? I Dont belong to a tribe either "hearing or Deaf" I Acquired Total Deafness... yes I see point you making....BELONGING, phew I think that everyday, even went away on therapy sent by Consultant with LINK..born Deaf L ear loss of 90dB in right, had hearing aid, YES It helped me through for short time and it was bliss no matter how difficult.

Remember some are not just Born Totally Deaf they lose All later not late late but later or early TEENS.

No Hearing,no Communication, TV sub-titles that I Can barely read,or films with NO sub-titles no music that I used to love when young young, do I know BSL, hardly much at all, going into hospital twice a year since birth doesn't give me a lot of time, did start a course but after 4 weeks I was yep in hospital ear ops again..So didn't go back because there was no time.

People seem to think that Deaf (Totally) are born that way, so brought up in the Deaf Culture....WRONG!!! SO THAT PUTS ME AND OTHERS ON A FENCE...But we Dont have a choice, no H.A's no Cochlear s ....Please Dont take this the wrong way AJ.....Im not moaning old git Honest lol.
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I'm saddened by your story. It looks as if you're in a very very difficult situation and your failed CI experience has traumatised you (I'm using the word "traumatised" in a medical sense of suffering the after-effects of severe harm, like being mugged or shot, not in a negative moaning way). To be going into hospital throughout your life and having regular surgery is a horrible way to live. My son for the first 10 years of his life was in hospital 5 or 6 times a year so I have an idea of how unpleasant it is, and how it stops a "normal" lifestyle. And I see your point that you are no longer able hear sound at all which at least people like myself and Ellen in the film do. You have my deepest sympathy.
 
stueyyy said:
Errr drPhil Im the guy from hearing journey (CJ) I think you know about all my problems with ears, if it is you?? that forum a good forum it is as well..

The guy who has severe spasms in face, paralysis on side of face, 2 brain abscess operations 6 months in a coma TWICE over 8 years,Labrythectomies, Balance Nerve cut,1st person in Uk to have cavity built in ears,etc etc etc tinnitus in both ears, Totally deaf with Complete Obliteration in both ears, failed cochlear Implant, now been removed, rushed back because meningitis even after injection, averages 2 operations a year on ears since birth til present day, and my next trick Im having op on eye cause by ear and bells palsy Im having whole eye stitched up.....Now on anti depressants..

Oh lets be happy, heavens above I do try....

Surely I have room to speak my feelings....I just feel Totally Deaf people seem to be ignored....I know when CI is off you are DEAF, and if hearing aids are off you are Deaf, but when they are on difficult or not it helps...sadly I tried for CI so its still Nothing...Oh well

Sorry if seems like negatives, but heck I try.....no bitterness though.
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I hate that for you. I understand paralysis on your face (same here), spasams (same), as for the other I hate that you have to go through that. Hang in there.
 
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