Invitation — To Long-Term Tinnitus or Hyperacusis Folks, Still Hurting, Suffering and "Silent"...

[Markku]

I am so, so sorry for having taken a while to get into this thread - those who know my current situation know why I haven't been exactly participating too much lately! But... I also see an incredible initiative and opportunity here for many of us and thus I have silently declined your request to unpin this thread, @Zimichael!

Thus, this "meet up" idea. I mean, is it so hard to imagine that we could not have some kind of annual TT meeting in person??? At some place, where we could just be folks with tinnitus meeting up with other folks with tinnitus and doing what humans do...Talk, share, support, rant, rave, cry, connect, brainstorm, come up with ideas that have not been thought before, or were too ephemeral to grasp until brought into the light of day with others adding to the conversation. And so on.
Hell, @Markku , has TT ever done this???
I know there have been tinnitus 'conferences' posted before, but those were for basically researchers and "white coats" to expound on their papers, or some such stuff.
What about actual tinnitus sufferers??? Do they ever meet, solely for the purpose of what I mention above?
Probably in big cities there are no doubt Tinnitus support groups, but I don't recall anyone on TT ever posting about them or reporting on them. (I don't have long institutional memory here).

We haven't had these, nope. And this is an area that we need to improve on.

I think that among a small group of people (doesn't need more than 5?) we can decide what we want to do - is it a group gathering for a week somewhere? We don't need hundreds of people attending; a few dozen would be awesome. Even less could do, in my opinion.

A theater / dance production sounds awesome - as does a book - but maybe the specifics could be figured out at the retreat/meeting.

Where that group of people would like to take things.

I think a meet up in itself at some nice place sounds fantastic - for a time that all pressure can (hopefully) be turned aside. A week of "bliss" (well bliss is relative as we know but...) where the group will talk and do things together. Spontaneous happenings. Why not also some activities planned ahead.

If we decide on this, then it's a matter of creating a simple page/thread with details (place, time, how to sign up, and so forth) of the week and advertising it a little. We can send an e-mail blast to over 10,000 tinnitus sufferers. Announce it on Facebook. Have an ad banner here on the forum for all visitors.

I will be forever surprised if we cannot gather a group of interested people for this.

And if we fail, I will join you @Zimichael by my lonesome - dammit! Two's better than one.

 

[Dana]

I will be forever surprised if we cannot gather a group of interested people for this.

And if we fail, I will join you @Zimichael by my lonesome - dammit! Two's better than one.

If we fail then let me join you two so we can at least say that we gathered a whole crowd, according to the old saying "Two's company, three's a crowd!"

 

[Zimichael]

@Markku , @Dana ...Thanks for your responses and "support".

Though no doubt "information" is the main currency of interaction here on TT, it would indeed be shocking to me too Markku if we could not even get a small group together in person somewhere. And I agree, not big. Not at first...(though the lack of interest may take care of that anyhow!), as getting a bunch of random humans together in one place can go in 'many directions'. Hopefully fruitful ones!
Yes I have organised such "events" before, both privately and in business, and have some experience of what may lead to more likelihood of 'success' for all. We do not want a "Burning Man" scene right off the bat!

@Markku...it may be that this thread is not the vehicle for outreach for this one idea, as the OP is initially long and somewhat multi-faceted. Though I do think that the premises in much of it as to why an in-person get together has relevance are valid, and worth being aware of.

Best, Zimichael

 

[LadyDi]

Hi @Zimichael and the rest: You may have seen that @valeri started a thread, keying off Zimichael's suggestion for a meet-up (among other things). Seems to be a lot of interest. If you haven't checked it out, here it is! We should be able to make it happen.
https://www.tinnitustalk.com/thread...to-meet-from-tinnitus-talk.11871/#post-146194

Although I recognize a meeting is not the same as supporting people who need it right away, and need more than an online forum. But maybe if we keep brainstorming...

BTW: We do have a tinnitus support group here in South Florida, and I attended for awhile. But I found it pretty disappointing. It was all very elder people (and I am no spring chicken) complaining that Medicare didn't cover hearing aids.

The American Tinnitus Association does keep a support group list on their web site but I don't know how current it is.
http://ata.org/managing-your-tinnitus/support-network

 

[Zimichael]

@LadyDi ...Thanks for lead here. Though yes, I am thinking of something rather different to this, though for sure in the right direction and could lead to something more successive, etc., etc. So good!
But no way New York City for me...This must be for folks without reactive T or H. I can hardly imagine a more stressful place for me to meet...well, anywhere 'semi-normal' there anyhow.
Best, Zimichael

 

[Telis]

My vote is Canmore, Alberta, Canada. Quiet town in the Rockies. Lots of eye candy. It's spectacular I promise.

 

[SoulStation]

My vote is Canmore, Alberta, Canada. Quiet town in the Rockies. Lots of eye candy. It's spectacular I promise.

I'm in . That sounds rad.

 

[valeri]

My vote is Canmore, Alberta, Canada. Quiet town in the Rockies. Lots of eye candy. It's spectacular I promise.

After New Zealand that was next on my list, Canadian Rockies!
Must be the most beutuful place on earth.
Not sure it will ever happen now...

 

[RicoS]

My vote is Canmore, Alberta, Canada. Quiet town in the Rockies. Lots of eye candy. It's spectacular I promise.

OMG !!!!! This is beautiful!!!!! ... @Telis You live there????????

 

[Telis]

View attachment 8494
View attachment 8495
OMG !!!!! This is beautiful!!!!! ... @Telis You live there????????

Yes I do! we are pretty lucky here. Gets a little cold in the winter but that's pretty easy to overlook when you are surrounded with this type of beauty. I live in Calgary (45 min drive to Canmore) and also live/stay in Canmore a lot of the time, kind of split between the two.

 

[SoulStation]

Yes I do! we are pretty lucky here. Gets a little cold in the winter but that's pretty easy to overlook when you are surrounded with this type of beauty. I live in Calgary (45 min drive to Canmore) and also live/stay in Canmore a lot of the time, kind of split between the two.

Now I really want to visit now and it would be cool to do a pow wow with other T folk. I am serious. I would say maybe July? How is it up there in the summer?

 

[RicoS]

Yes I do! we are pretty lucky here. Gets a little cold in the winter but that's pretty easy to overlook when you are surrounded with this type of beauty. I live in Calgary (45 min drive to Canmore) and also live/stay in Canmore a lot of the time, kind of split between the two.

If I would be there I woud have tears in my eyes of the beauty....in The Netherlands we do not have mountains or anything....it's terrible....everything is flat and everybody is in a hurry...... I thought Austria and Switzerland were beautiful but this is beyond my believe..... I have to visit Canada ones in my lifetime.....I just have to!!

 

[Zimichael]

Dear Everyone Talking About "Locations" for some kind of Meet-up...

Can I please request that this thread goes back to my original post and overall commentary...of which a possible meeting of people in person, was just one thing out of many aspects. Quite honestly, I can say that a "place" or "location" fest on this thread is irrelevant. It's not what the thread is about at core.

Way before a "place" is even worth considering, would be the reasons, the hopes, the expectations, the purposes, the interest, the degree of seriousness, and so on and so on...for such a "meet-up". IF there is a sense that such and such a kind of meet-up is worth doing, then one starts to put out feelers about "where". And if the reasons are dear enough and important enough to the people that want that...then it may not matter where the hell in world it is except that it be "T tolerable"...as that is what we are afflicted with so have to primarily "locate for".

The human reasons for getting together are way, way more important - to me at least, than some pretty location!
Not saying anything wrong with a pretty location, but Geezuz folks, get a grip...Considerations like access, accommodation costs, food, logistics, space, money requirements, and on and on...are a massive consideration. Don't even go there until there are damn good reasons for really wanting to.

Not on this thread please. And certainly don't think I would just blow off my energy, for sure fruitlessly, trying to organize for such an event. Sorry, been there, done that. Not interested.

If anyone (me included) wants to just have some kind of 'fun, hey, howdy, let's just jam around together in a cool place" or whatever...please start a NEW THREAD, with that as the invitation.
Oh...And I suggest making a separate thread for different uber-geographical areas: Europe, UK, Scandinavia, USA - West/East/Central; Australia...wherever.
That might make it actually happen.

Thank you for getting this thread back on original track in future. (If you have forgotten what that is, go back and read the original post!).

Zimichael

 

[Telis]

Dear Everyone Talking About "Locations" for some kind of Meet-up...

Can I please request that this thread goes back to my original post and overall commentary...of which a possible meeting of people in person, was just one thing out of many aspects. Quite honestly, I can say that a "place" or "location" fest on this thread is irrelevant. It's not what the thread is about at core.

Way before a "place" is even worth considering, would be the reasons, the hopes, the expectations, the purposes, the interest, the degree of seriousness, and so on and so on...for such a "meet-up". IF there is a sense that such and such a kind of meet-up is worth doing, then one starts to put out feelers about "where". And if the reasons are dear enough and important enough to the people that want that...then it may not matter where the hell in world it is except that it be "T tolerable"...as that is what we are afflicted with so have to primarily "locate for".

The human reasons for getting together are way, way more important - to me at least, than some pretty location!
Not saying anything wrong with a pretty location, but Geezuz folks, get a grip...Considerations like access, accommodation costs, food, logistics, space, money requirements, and on and on...are a massive consideration. Don't even go there until there are damn good reasons for really wanting to.

Not on this thread please. And certainly don't think I would just blow off my energy, for sure fruitlessly, trying to organize for such an event. Sorry, been there, done that. Not interested.

If anyone (me included) wants to just have some kind of 'fun, hey, howdy, let's just jam around together in a cool place" or whatever...please start a NEW THREAD, with that as the invitation.
Oh...And I suggest making a separate thread for different uber-geographical areas: Europe, UK, Scandinavia, USA - West/East/Central; Australia...wherever.
That might make it actually happen.

Thank you for getting this thread back on original track in future. (If you have forgotten what that is, go back and read the original post!).

Zimichael

Well I think that talking about a place to meet can kind of get people excited. . That little bit of spark may lead to somthing bigger. I think that it's nice to keep the mind open to anything and everything, kind of see where things go, maybe it all starts with talking about a cool location to get things happening, who know right?

 

[Zimichael]

Well I think that talking about a place to meet can kind of get people excited. . That little bit of spark may lead to somthing bigger. I think that it's nice to keep the mind open to anything and everything, kind of see where things go, maybe it all starts with talking about a cool location to get things happening, who know right?

@Telis ...I agree that anything to "get things happening" is admirable. However, it is very easy for threads to get side-tracked and diversional. I'm sure I don't need to give you examples as we have plenty in the TT annals!

In this instance, yes, the "location" aspects for a meetup is sort of a 'fun' thing to do and speculate about so can rapidly 'take over the direction' so to speak. See how this aspect took off in the spin-off thread: https://www.tinnitustalk.com/threads/who-would-you-like-to-meet-from-tinnitus-talk.11871/ ...and also see how the initial post title has morphed!

The post title on this thread (of mine) is definitely on the "heavier side" and purposefully so. And I want to keep that focus. We have many, many examples in TT of "avoiding" the harsher, harder realities a number of us face and live with daily. I would say there is even quite a strong lobby on TT that think it's a bad idea to "get heavy" as it's a downer, and not uplifting or encouraging, etc., etc. Well...my polite version of that viewpoint is: Good grief!!!

It is natural to want to avoid heavy shit and lean towards the lighter side, though indeed that is also why most of those I know of in this same boat as me are so incredibly isolated! The "normal world" folks out there avoid us like the plague. We are absolutely no fun to be around as require sound/noise consciousness, awareness, and effort. Too bloody high maintenance!...So it's the steady "bye bye" thing. Maybe some contact way later and then the absolute awe of: "You mean you are still not better??? But it's been like ages!!!"....Duh! Yeah idjit...And then of course completely giving up on us as freakos and whack jobs.

So yeah Telis, posting pretty pics, and talking about venues is no doubt more fun...but will lead to zero IMHO unless it is more targeted and dedicated with someone willing to put work and effort into making it happen. I have given a few guidelines on that already (like a specific titled thread on that one topic, narrowed down specific geographic regions, etc.), but am pretty burned out myself on having threads go off track...especially if the title and original post is clearly about very real suffering and attempts to do something about that more widely.

And yes, my laying this on a bit thick may admittedly have to do with massive personal "hope exhaustion", but to me, the fact that I am still trying to do something at all on TT is a testament to not having given up completely yet. Telis, I know you have suffered greatly, and still suffer too...and I'm really sorry that is the case.
However, maybe after 59 years of this T shit I'm just "up to the gills" and I hope you can take this response in the spirit it is given.

Take care, Zimichael

 

[Zimichael]

Just realized I should "cross-link" to the thread I started that explains more about the "Meet-up" idea, which is one of the elements involved in my original post of this thread.
Here it is: https://www.tinnitustalk.com/thread...tt-meet-up-idea-i-have-been-mentioning.12005/

 

[Zimichael]

Update to my last post above, that cross-links with this thread, from:
https://www.tinnitustalk.com/thread...tt-meet-up-idea-i-have-been-mentioning.12005/

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So this is it???...One "get well soon card" for my attempt at discussion about actually meeting in "reality" instead of informational, ephemeral, here-today-gone-tomorrow cyberspace???!!!

Yes, I have been hit for the FIFTH TIME with more T and H damage, and have thus been in less outward reaching "mourning and shock", but does that mean everyone else is plain not interested in addressing this subject at all?
Is it only me who is willing to put a modicum of energy and effort into making such a thing happen?

If so, maybe I am just really, really, really different and in a whole other universe - not only with my type of tinnitus, but also with my whole outlook on what "life" is - and what "human contact" truly means.
If the future of human connection is going to be primarily this electronic interface, (and it sure looks that way when I see how younger people and kids are umbilically attached to all this 'chimera' from birth), I grieve not only for myself...but for the whole planet and "Paradise Lost".

Zimichael

 

[MichaelDC]

@Zimichael ... I just ran across this discussion for the first time this morning. I wish I would have seen it sooner.

I haven't had T very long but it has already had some major impacts on my life and the feeling of isolation is probably the greatest change I'm learning to deal with.

I would very much like meet up with a group of fellow of T sufferers in any place I can get to. I don't know anyone else with T and it would make this world seem a little less isolated and vast to just be in a room with someone else who knows what this is like.

I don't know anyone with a place in the country we could meet and I don't know anything about organizing anything on such a scale, but if you have any ideas, I'm in.

Even if it just means coming to where you are and meeting you in person.

I hope you don't give up on this even if you didn't get the response you were hoping for.

 

[Zimichael]

@Zimichael ... I just ran across this discussion for the first time this morning. I wish I would have seen it sooner.

I haven't had T very long but it has already had some major impacts on my life and the feeling of isolation is probably the greatest change I'm learning to deal with.

I would very much like meet up with a group of fellow of T sufferers in any place I can get to. I don't know anyone else with T and it would make this world seem a little less isolated and vast to just be in a room with someone else who knows what this is like.

I don't know anyone with a place in the country we could meet and I don't know anything about organizing anything on such a scale, but if you have any ideas, I'm in.

Even if it just means coming to where you are and meeting you in person.

I hope you don't give up on this even if you didn't get the response you were hoping for.

Thanks! Hell maybe if I finally get my shit together enough to deal with the 500 things it takes to go across the country for this new H treatment (NOT to discuss here please - and no more PMs on it either unless to offer help - thanks!) I may be able to "do" more again and put more effort into this whole: "Kill the bloody T Isolation Dragon" a bit more...all of which was derailed by my increased damage a month ago - yeah, after I started this thread.

Best, Zimichael