Stepping Up to the Plate

Discussion in 'Awareness & Fundraising' started by Jazzer, Dec 10, 2018.

    1. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      My video man Phil Swallow and I managed to finish filming a tinnitus awareness video yesterday.
      I have only seen a rough cut, but I think and hope it will be effective.

      (Incidentally, I did try on ‘a little pink number’ before the shooting - I hate to be outdone by the TV celebs of course - but to be honest - it didn’t really suit me.)

      Hopefully it will be ready for the Tinnitus Week.

      (a rare shot of me laughing)
      CE4FB51A-2C9F-4B0E-8D38-3744B8E9E576.jpeg
       
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    2. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      Look at you Dave all in blue even matching socks, you blend into the couch so well haha

      Well done man, I look forward to seeing this, much respect.
       
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    3. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Jazzer,
      I know it will be great Dave and like yourself when I met you,warm and caring with Severe Tinnitus...

      love glynis x
       
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    4. Jack Straw
      Balanced

      Jack Straw Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      @Jazzer you don't look a day over 40!
       
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    5. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      You're not too bad looking yourself. :love:
       
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    6. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Jazzer thanks for making me smile. Looking forward to your video.

      You are a handsome dude. Sylvie is a lucky woman. And you are a lucky guy.:)
       
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    7. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you so much for your kind comments Star.
      Believe me, Sylvie is just a gem.
       
    8. Hazel
      Dreaming

      Hazel Manager Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Wow, I can't wait to see the result!

      I know you were a bit self-conscious about doing this (if you don't mind me saying so), but I certainly can't tell from that photo :D

      I'm sure you did a great job telling your story, and it will be an amazing resource for awareness raising.
       
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    9. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you Hazel - that is very kind of you.
      My first idea was to do a video of my jazz life, ending up with Tinnitus.
      But I quickly realised that that would be superficial and self indulgent.
      This message is far too important to be treated so.

      (If anybody wants to view my jazz life there are some video clips up on here, ‘Jazzer’s Videos,’
      or they can access them on YouTube
      ‘Sylvia Hewett Jazz.’)

      This is a video about the experience of being a Tinnitus sufferer.
      A sad story I know - except that I am surviving.
      As we all know, not everybody can.
      There are many things in my life to help me.
      To that extent I am one of the lucky ones.

      Thank you for your encouragement, and to @TuxedoCat for giving me a big “Push,”
      straight into the deep end!
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      You said it! It's an important message, tinnitus is not to be trivialized. It's permanent and changes life forever.

      A real life sufferer, one with feelings and a heart, not some statistic on paper that the ATA can't get right.

      Me, too. Especially when you called me 'Babe' :)

      Yes Dave, but I had a hunch you were a world class swimmer!

      Hope you and Sylvie have some nice holidays ahead, TC
       
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    11. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Hi Glynis - still my favourite

      xxx{{{{{{ HUGGER }}}}}}xxx

      Love
      Dave x
      Jazzer
       
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    12. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Liar - Liar - pants on fire....!”

      (If only.....x)
       
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    13. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      What happened to Jazzer’s video?
      We did the filming.
      We did the editing.
      I told it ‘like it is!’
      Before committing myself any further
      I slept on it. I felt uneasy about it.

      I consulted my two very best mates.
      Should I really submit myself to the prospect of being eternally viewed as a tragic figure?

      Living with severe Tinnitus is a hateful situation to have to endure.
      It is not a spectator sport.
      Those of us that have it know exactly what I am talking about.
      Others will not have a clue, and will think that they are furthering the cause of humanity by recommending - the choosing of happiness and the enjoyment of sunshine. etc.....

      Sympathy does me no good whatsoever.
      It changes nothing.
      Empathy and understanding are a different matter.
      However, once released this resource would be available for anyone to watch at any time, repeatedly.
      What negative effect might this have on me?
      Would it even set me back?
      Trolls are a fact of life.
      They exist within our support group.
      I have witnessed lovely suffering members being ridiculed for bouts of deep depression, or mental illness, by trolls who do not have the condition, but love nothing more than to spout out their callous disregard for those in extreme pain.
      It clearly represents sport to them.
      Vile and Appalling - they should seriously be kicked off of the forum!!

      I have lived with this severe condition for well over four years now.
      To a certain extent, I have learnt to live with it.
      But what good would this total exposure do for me?
      What good would it do anyway?
      I am 76 years old.
      Old people suffer illnesses. It is expected.
      Are the young and vulnerable going to care, are they going to take any notice?
      I think not.

      By all means write an anonymous life story, if you feel it will do any good.
      I wrote a ‘potted’ autobiography identifying myself, which I plastered all over Facebook.
      I have already ‘done my bit.’

      But total identifiable exposure?
      Not a good idea I now feel.
      Perhaps even potentially dangerous.
      Is this something that we should be encouraged, to do?
      I believe on personal terms the answer has to be ‘No.’

      I am still glad that I made the video.
      It will be kept.
      I will ensure that it is released after I’ve gone.
      It will inform my kids and my grand kids what actually happened to their formerly carefree ‘pops.’

      But until then - a bridge too far.....x
       
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    14. another sean
      Studious

      another sean Member Benefactor

      Location:
      Los Angeles
      Tinnitus Since:
      2015
      Cause of Tinnitus:
      Long duration of low audio
      I'm sorry the video won't see the light of day anytime soon. I have been planing on making a short documentary of life with tinnitus to bring awareness as well and it was nice to see another similar project. But I understand your reasons for this decision.
       
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    15. david c

      david c Member

      Tinnitus Since:
      01/2012
      Completely understand your reasons for not going ahead with the project and I think you have personally made the right decision. Awareness is important but I think the really important thing is to achieve change in the way tinnitus - and issues such as habituation - is presented by our main tinnitus charities.
       
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    16. Autumnly
      Wishful

      Autumnly Member Benefactor

      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Don't worry, Jazzer, I totally understand why you're feeling this way. I thought about making a video (showing my face) telling my story with t/h for Tinnitus Week but couldn't do it, I'm too scared of the backlash. One the one hand I want to say 'Please share this video, perhaps someone will finally understand how horrible this condition can be!" but on the other hand, I completely understand why you wouldn't want to upload it.
       
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    17. Jack Straw
      Balanced

      Jack Straw Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      This would be fantastic, I would love to help with this.
       
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    18. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You hit the nail on the head on what - in my opinion - is perhaps the biggest cause of the lack of awareness.

      When I see you feel this way at 76 when you have already "made your mark on the world" (I do not mean this in a dismissive way: I mean you have nothing to prove anymore - you're already a success story), I can only imagine a younger person who doesn't want to jeopardize the chances of getting a job and provide for his/her family if the world at large sees him/her as "broken goods"...

      There's such a disconnect between the challenges and distress imposed on the sufferer and its (in)visibility, that a natural reaction to someone expressing the seriousness of it all is often to dismiss it as an illustration of the weakness of the sufferer who just "can't cope with such a minor annoyance". We do know, from articles often quoted in here as well as testimonies of encounters with medical doctors, that the word out there on tinnitus is that it isn't a big deal, so such reaction, as unhelpful as it can be to tinnitus sufferers, isn't unexpected.

      The fear of consequences of speaking up is maybe the toughest nut to crack when it comes to raising awareness. We all want the word to go out, but hardly anyone wants to be the one saying it publicly.
       
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    19. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Sigh...I understand also @Jazzer. I really do. My story has been kept to myself for way too long. Recently, I gave it to Markku for the awareness event. It took days for me to write and put me in a bad way for a while remembering what happened back then.

      Always trust your gut instinct my friend. Always.

      Hugs....
       
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    20. Jack Straw
      Balanced

      Jack Straw Member Benefactor Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      I think the real reason you decided to pull it from release was because you were nervous about getting messages from all the ladies on tinnitus talk wanting to get to know you better. ;)

      In all seriousness I am sad that you have decided to not produce the video because I think it would bring a lot of light and awareness to it. Please don't throw it away and hang on to it. You may change your mind after all!

      Regardless I think you taking the steps to do what you have done is still an achievement!
       
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    21. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      It will come out eventually - I promise you. x
       
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    22. Jcb
      No Mood

      Jcb Member Benefactor

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      I understand buddy, keep the film as you said just in case I’m sure it’s a compelling watch. Have you thought about writing a bit instead and sending that in? I know you said you have already on Facebook just a thought.
       
    23. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Jazzer You always had reservations about making the film. Actually, I'm surprised you went as far as you did with it. Now its your legacy for your children and grandchildren. It was not in vain.

      Wishing you both smooth sailing on the QE2.

      TC
       
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    24. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      dude, please follow through. I bet your film will be the realist thing since biscuits and mustard. you have a good poetic, cynical no bullshit opinion of things which is good.
       
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    25. JohnAdams
      Sunshine

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      you got some top equipment there bloke
       
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    26. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Dear Jcb - I have done just as you asked buddy,
      my story is written up and is in the can.
      See - you are a man of influence,
      love
      Dave x
      Jazzer
       
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    27. coffee_girl
      Festive

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      Not at all what i imagined, you actually look like a nice person! ;)
       
    28. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Ear wax impaction and possibly antibiotics
      What a kind and happy face you have.
       
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    29. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @Jazzer

      I agree with your decision not to go upload your video. Whilst you mean good there are people in this world, that can turn any situation around and make it into something that it isn't, and your good efforts may come back to haunt you. It is the reason I use a pseudonym.

      All the best
      Michael
       
      Last edited: Dec 18, 2018
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    30. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      Warlingham UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Oh I am a nice person alright
      I am a kind person
      I love people
      I just loath bullshit.
       
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