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Unread 06-10-2011, 02:17 PM   #31 (permalink)
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Unread 06-12-2011, 09:06 AM   #32 (permalink)
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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.

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Unread 06-15-2011, 03:24 PM   #33 (permalink)
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I completely see myself as this girl. Great film, thank you so much for sharing it with us
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Unread 06-16-2011, 04:31 AM   #34 (permalink)
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I completely see myself as this girl. Great film, thank you so much for sharing it with us
YES! AJWSmith!!
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Unread 06-25-2011, 06:46 AM   #35 (permalink)
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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.
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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Unread 06-25-2011, 07:00 AM   #36 (permalink)
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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.
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....
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Unread 06-25-2011, 05:19 PM   #37 (permalink)
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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.
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.
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Unread 07-01-2011, 06:05 PM   #38 (permalink)
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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.
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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Unread 07-01-2011, 06:38 PM   #39 (permalink)
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thank share to me! let know me!
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Unread 07-04-2011, 11:55 AM   #40 (permalink)
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The film was amazing. I watched it three times and it gets me every single time.
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Unread 10-27-2011, 03:13 PM   #41 (permalink)
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Both ears been skin grafted with skin taken from tummy now as there is nothing to see completely EMPTY, no senso's ,no ear drums, no cochlea's Nothing, Consultant has typed on Monitor even new hair cell growth wont be of any use to me.

Why did I have Cochlear Implants removed, because I had Abscess on the brain TWICE over a few years, nearly lost my life, brain rejected Implants, where electrodes went damaged parts of brain rejected.

You see Im not young, I need to do something and cant i cant get out of house now, fear of leaving going outside, I try but cant...no communication, cant talk to people...dizziness,Tinnitus bilateral 24/7 non stop..and the person who mentioned about spasms in face is because I was born paralysis on 1 side of face, they feel its coming back again :-( at Hospital...

Deaf clubs closing nearly everywhere...I look for clubs but its getting out of house Consultant who came to my house gave it a name..I cant remember..now memory after checks dementia is at early stage? whats next life can throw at me, I will still try and fight, because I Dont give in, might have a moan that helps... well been away long time been in hospital 4 times and this year isnt finished yet...but you know what.

IM STILL BREATHING.
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Unread 10-27-2011, 03:26 PM   #42 (permalink)
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Deaf clubs closing nearly everywhere...I look for clubs but its getting out of house Consultant who came to my house gave it a name..I cant remember..now memory after checks dementia is at early stage?.
Agoraphobia
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Unread 10-27-2011, 09:17 PM   #43 (permalink)
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Thanks for sharing this. My heart broke for her when the host of the club criticized her so strongly and publicly :-(. I feel very fortunate that, in my early experiences with the deaf community, I did not meet anyone who criticized my signing nor blew me off because of my poor ASL - that would have shattered my confidence and my goals. To-date, even though my ASL still lacks fluency, I have only met one deafie who has shown me impatience and anger with my communication - everyone else has been polite, kind and encouraging. Whether a hearie in a deaf world or a deafie in a hearing world, it's amazing how even one act of kindness, one hand reaching out, can make such a difference.
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Unread 10-29-2011, 04:09 AM   #44 (permalink)
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The club host showed such an elitist attitude! It makes me so sad to see him berate Ellen. Yes she had areas needing improvement, but offer suggestion and support, not deafer-than-thou put downs. Attitudes like his will only serve to hurt signed languages and Deaf culture.
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Unread 10-29-2011, 09:28 PM   #45 (permalink)
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When I saw this I wanted to:
1. Slap the little brother silly - and wondered why mum didn't step in.
2. Find out why mum won't tell her boyfriend to speak clearly and stop covering his mouth?
3. Cry. And I am not one to cry easily at movies! But rejection and abandonment always hit the right trigger for me - it's too close to home.
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Unread 10-29-2011, 10:14 PM   #46 (permalink)
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I was raised by a hearing family to speak English. My mum disapproved of ASL.
I'm glad there's nothing else physically wrong with me, like my bio brother who inherited the family curse of dyslexia. (I still hold out hope that based on my not getting dyslexia, my future kids won't.)
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Unread 10-29-2011, 11:20 PM   #47 (permalink)
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Wow, that touched me. I can see a lot of myself in her. Made me think - if someone wants to be friends with me then they need to be friends with who I am. Makes me wonder if I should quit trying to be a part of the messed up hearing world that doesn't understand - but yet I still have some hearing left so I feel like I'm not quite accepted by the Deaf and that's understandable.

No one understands what I'm going through here in real life. They just kind of brush it off or force their messed up hearing agenda over onto me and turn me into some freak circus spectacle.

I just wish I had one person to accept me for me, not some fully hearing version of me.
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Unread 10-29-2011, 11:28 PM   #48 (permalink)
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I just wish I had one person to accept me for me, not some fully hearing version of me.
I will! I know that doesn't help much online...

I have a hard time relating to anyone who lived a "charmed" life. I fit in with those who have had a few knocks along the way, like me.
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Unread 11-11-2011, 08:51 AM   #49 (permalink)
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Just watched the movie...

Jesus Christ! It's been a PITA getting a passing grade in the hearing world, and clearly it's going to be a PITA getting into the Deaf one - why else would this movie have been made if it didn't truthfully portray the reality for us in-between'ers?
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Unread 11-12-2011, 06:34 AM   #50 (permalink)
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AJ, I want to personally thank you for sharing this video with us. I probably would have never come across it otherwise. I can clearly see how it won multiple awards (Best Actress/Best Short Film). The story is just so touching and it's something we can all relate to; deaf, HOH, and even hearing. We all want to feel like we belong somewhere, and Ellen found where she felt accepted. I will definitely be sharing this with my friends. Thanks again.
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Unread 11-16-2011, 06:06 AM   #51 (permalink)
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Great video. Does it make me understand the deaf world and HOH world better? Yes, I think so.

Just a thought. If someone could find links to other threads, I would be grateful.

I am HOH since birth and my hearing has not worsened as far as my audiograms can tell. It is not clear from the video if she was born with it or developed it. A worsening condition (going hearing -> deaf, hearing -> HOH or HOH -> deaf) is something that I am wondering about. What emotions do people experience? What do they do to manage their situation?
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Unread 11-23-2011, 02:52 AM   #52 (permalink)
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Great video. Does it make me understand the deaf world and HOH world better? Yes, I think so.

Just a thought. If someone could find links to other threads, I would be grateful.

I am HOH since birth and my hearing has not worsened as far as my audiograms can tell. It is not clear from the video if she was born with it or developed it. A worsening condition (going hearing -> deaf, hearing -> HOH or HOH -> deaf) is something that I am wondering about. What emotions do people experience? What do they do to manage their situation?
Hi there HH scientist

Below is a link to a good thread on AD to read of people who lose their hearing, either gradually or suddenly. It's been going for a long time and is very long. It's a "stickie" in the Our World, Our Culture forum.
Adjustment to late onset deafness

I was born HOH and raised orally through mainstream education. I thought my HL (hearing loss) was stable in the severe-profound range, but in recent years there has been a continual slight decline. In the last year I passed a tipping point - profound HL in both ears - and all the strategies (lip-reading, amplification aids, etc.) I had been using since a child no longer worked anymore . I can no longer interact with hearing people in the way I could - can't use phone, can't follow group conversations. This thread was a lifesaver for me.

As for Ellen in 'My Song', the impression I had was that she was born HOH and grew up struggling to hear (there was newspaper clipping praising child dancer who was deaf). After 17 years she had had enough and was learning to use sign language as she felt it suited her more.
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Unread 11-26-2011, 12:10 PM   #53 (permalink)
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AJ is that you in film?
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Unread 11-26-2011, 03:33 PM   #54 (permalink)
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AJ is that you in film?
How did you guess? I thought by putting on a wig and false boobs, taking off my glasses & beard and speaking in a woman's voice I'd fool everyone...
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Unread 11-26-2011, 04:32 PM   #55 (permalink)
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^^^You're good!!!
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Unread 11-26-2011, 04:38 PM   #56 (permalink)
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I just watched this film a couple days ago. WOW...
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Unread 11-26-2011, 07:25 PM   #57 (permalink)
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How did you guess? I thought by putting on a wig and false boobs, taking off my glasses & beard and speaking in a woman's voice I'd fool everyone...
Not the woman! The man who 'host' "Sign Night". He remind me of you so thought would ask.
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Unread 11-27-2011, 01:36 AM   #58 (permalink)
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I've watched this short film at least 7 or 8 times in the last few days. It hits so close to home.

I posted it to my Facebook wall for all the hearies on my list to see. I really hope people watch this and maybe finally "get it."
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Unread 11-27-2011, 08:19 AM   #59 (permalink)
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Not the woman! The man who 'host' "Sign Night". He remind me of you so thought would ask.
Whoops I misunderstood! The answer is 'No' that isn't me. I didn't any involvement with this film at all sadly. It would have been a honour if I had.
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Unread 11-27-2011, 04:42 PM   #60 (permalink)
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I've watched this short film at least 7 or 8 times in the last few days. It hits so close to home.

I posted it to my Facebook wall for all the hearies on my list to see. I really hope people watch this and maybe finally "get it."
Do same. Girlfriend from New Jersey watch whole thing and she really touched by.
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