The Day the Music Had to Stop...

I can vouch for that one. We are, indeed.

I think the question is, not if, but when there is a cure? I hope it'll happen in our lifetime and we will get to hear the sweet sound of silence again. Serenity.

A 'brutal' realist. How about an experienced optimist? I wish hard there was God that would help us get rid of tinnitus and other chronic pains, ailments etc. Perhaps, there is a higher being. Just not the way we imagened it to be.

As for the current state of things & reality... to me hope & science are everything. Human effort, joining forces and mutual collaboration. I'm in a psych. drug. w/d and with every dose reduction... well, my t. seems to worsen.

If I go to the support section on here, I read about peoples' personal tragedies, suicidal threads and what suffering tinnitus brought into their lifes. I'm in a pretty dark place myself as of now. I don't want to contribute to all the misery there with my own problems. Accepting the reality... I cannot live like this.

I only hope when this tinnitus & bad phonophobia reach the threshold of my tolerance, there will be someone to help.

Just one question. I think I read somewhere that partly the reason why your tinnitus is so bad is because you were on some type of medication + noise, correct?

Where did you find the strength and courage to still play in a band for such a long time? Were you not scared of permanently making your tinnitus even worse? I'm still a newbie, I've got no idea.. is that mind over matter?

Have a great day, Jazzer.

Oh, and yes. Tooth faires are the best! Certainly much better than dental drills. Heck, I'd even marry a tooth fairy.

 

Hi Jiri
I’ll try to explain.
As a child I lived in a hell of loneliness and misery.
My mother was chronically depressive, and consequently incapable of bonding with me.
My isolation nearly killed me.
I was so schizoid and depressive myself, that nothing could stir me or raise my spirits.

Then, when I was about ten years old, the Salvation Army loaned me a cornet - and guess what - in a few weeks, I could play it.
There was just something about music, a mystery to a lot of people, that made sense to me.
It was a conceptual thing, and I got it,
I understood it!

At age 18 I borrowed my twin brother’s trombone - worked out where the slide positions were, by ear, and taught myself to play it.
I have never had trombone lessons.

So I went on to play in numerous jazz bands over the years, and was still playing in five bands when I packed up a few weeks ago.

My Tinnitus had been very mild for over 20 years, but back in 2014 it really ramped up.
The gig was too loud, and I complained, but to no avail.
The very next day my Tinnitus was waiting for me when I awoke.
Hell on Earth.
It is now loud, intrusive and permenant.
Yes, of course I was reluctant to throw 50 years of delightful, successful playing away.
For four years I managed to fulfill all of my commitments without any further damage, by judicious use of ear plugs.

Eventually I decided that I should remove myself from any further risk, so I threw in the towel.

Hope that answers your main question.

On my next post I will answer the point about being a ‘brutal realist.’

 

@Jiri

A brutal realist.

My prehistory.

I was a breach birth.
Born touching my toes.
The first glimpse the world had of me was my arse’ole.
As an infant I cried and screamed.
I was inconsolable.
By now, my mentally ill mother had theee boys and could not possibly cope.
I sensed that. I felt desolate and unloved.
By thirteen weeks I had screamed myself into a hernia, and had to wear a truss to hold it in.
My ancient aunt told me that after that incident I didn’t cry again. I wouldn’t cry. I couldn’t cry.

It seems that we can only cry when we sense a consoling presence. There was none.

I survived in a schizoid way by deciding
“There is no love.” - “There is no love.”
That was simply a case of accepting the
Brutal Reality.
I seemed to know that that was the only way to move forward.
Stop looking for it.
I brought myself up.

Jump forward about 29 years, when in psychoanalysis, my flood gates opened and
I sobbed uncontrollably for days.
I started the long process of getting better.

Jump forward to now, and I have Tinnitus - permenant loud noise in my head.
Tinnitus is a brutal reality.
There is not a great deal I can do about that, but
there are some things that I can do about it.
I can decide to remain positive.
I can determine to live my life.

I can develop some relaxation techniques, I can meditate, I can find some therapeutic aids to help me cope the best way possible.
I need to survive today.

Sure I want an effective treatment, of course I want a cure; but in the meantime I choose to live the most comfortable way that I can, not just by simply scouring the research news for possible treatments, thereby living only for tomorrow.

I have been incredibly honest and open about some hugely traumatic experiences in my life here.
I learnt just the other day that that can lay one open to cynicism and ridicule, but I don’t care about that.
I’ll risk it.

Finally, I would like to quote an item by John Stockdale, who followed the principles laid down by philosopher Epicurious, hundreds of years ago.
.............................................................................

John Stockdale was imprisoned in the infamous
Hanoi Hilton for eight years, suffered appalling treatment, continuous torture, isolation etc...

His answer to this question is very enlightening.
Finally I asked, “Who didn’t make it out?”

“Oh, that’s easy,” he said. “The optimists.”

“The optimists? I don’t understand,” I said, now completely confused given what he’d said earlier.

“The optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart. This is a very important lesson. You must never confuse faith that you will prevail in the end–-which you can never afford to lose–-with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

The Stockdale Paradox states that you have to have faith that you will prevail in the end, regardless of the difficulties, and at the same time,
you must confront the most brutal facts of your current reality, whatever they might be.

 

@Jiri
I hope I answered your questions okay.
I am really sorry you are in such a bad way.
Such a unique bastard thing this is.
Just so f***ing hateful.

It often occurs to me that we need to see our noise as normal, if possible, to be able to accept it more.
If it were possible to accept head noise, there would be no problem would there.

I practice meditation/self hypnosis every morning.
Just before rejoining consciousness I repeat whatever message I think might suit my day best.
I often ‘think’ the words,

‘Easy Dave - Hiss is Normal.’

I also occasionally use the same phrase when fully conscious, as an auto-suggestion.

There seem to be days when that really works for me, but of course there are also times when I dip quite badly.

Best wishes Jiri,
love
Dave x

 

I appreciate your passion Jazzer and your good attitude, you also have good tips, but it's also kinda depressing. And this is not to downplay your message, but I'm just venting. Everyday we have to tell us million things and meditate when everybody else just wakes up, get their coffee and go with their day. It's just so wrong that we have to withstand this. I can tell any lie to myself that my ears are not broken, but the truth is that they are and I cannot do a damn thing about it. When I plug my ears, I hear the same exact flatline sound when a heart stops beating. The sound of killed ears.

 

@Jazzer Your childhood was pretty tough, to say the least and I am very sorry about that. I can somewhat relate to your suffering as I lost my parents when I was 12. Now I'm losing my grandparents who are in their late 80's and then I have no one else. I hope this doesn't sound cruel but sometimes I wish I had a friend with t. who'd understand.

No one else does. I changed drastically over the past 6 months since I got it. To make matters worse, I think it was actually the psych. drugs that made my t. worse, as in early January I remember I could hear silence in the morning when I woke up for like 30 mins, sometimes longer. So I was being optimistic and very protective of my hearing.

Anyway..

...​

The way I see your story - Aside from those very awful early stages of your life, you were clearly a gifted child when you could learn to play all those instruments by yourself without any guidance. That's talent right there. 50 years of delightful and successful playing? I don't think I can even fully grasp the concept of it. I'm only 31 anyway..

Before that you said

20 years is a long time and if by "very mild" you mean 'must plug ears to hear in a quiet room', then that to me sounds almost like a blessing. Ofc, again, I'm really sorry to hear that your 't.' is brutal now. No one should suffer like that.

'Brutal' realist. I think I understand what you mean by that. However, in that John Stockdale story 'the optimists' didn't have what we have now. Science on our side. More and more people are getting tinnitus. Researchers and docs all know that the earbud generation is going to be a flood of ear problems. It already is.

Those optimists in that prison - that was mostly 'wishful thinking', imo. Now we have already clinical trials with human subjects going on. Companies trying to trick the body into fixing and growing new synapses etc.

Ok, I always believed in 'per aspera ad astra'. Now, I think that applies mostly to health people. 6 months ago I was one of 'em. That's why I worked my a$$ off so hard and now I must face up to the consequences.

Still, there is one part of my favourite poem that I've always believed in. There's hope in that part for better tmmrws.

Tho' much is taken, much abides; and tho'
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

ULYSSES' by Alfred Lord Tennyson

Else, there'd be no point making all those money donations to this site and just, being proactive about our crappy situation. Just my opinion.

Agreed. One just needs some hard facts to base his/her faith upon, otherwise it's no better than those 'optimists' in that prison story. Just wishful thinking. I do realise that there were many similar 'crash and burn' projects in the past.

Yes, you did and more than okay.

Precisely. It's not even the ringing in the ears like the static head buzzing noise that knocks me out of this world.

If only there was a guarantee that it won't get any worse, then perhaps I could habituate to it too. I now hope that after my 'detox' things won't get any worse. That'd be it. I think the docs messed up real bad with my brain chemistry.

Funny & sad at the same time that legal drugs can be a lot more dangerous than illegal ones....

Hope, based on some solid facts, and science on our side for better tomorrows in the near future. Otherwise, like I said, can't socialize, can't even imagine to have fam. and kids, a career, trips & holidays.. the usual stuff. It is a monster.

All the best Jazzer,

J.

 

@Jiri and @Jazzer,
Life has been tough for you both and for me also.
Loosing both parents after eachother and a year next week for my mum.
I spent day and night by their sides till they slipped away.
Tinnitus in both ears and Menieres and hearing loss and breathing problems...etc

On a positive note it's lovely to have friends on here and support eachother and care about eachother and can come on here and also pm eachother.
Today I started out a bit low but I have so much to be happy about and @Jazzer and @Jiri we all will be ok....
love glynis

 

@glynis

.......just want to say....you are a gem

Love
Dave xxxxx

 

@Jazzer,
Thank you and great having you on here you truly brighten up the forum.
Hope your day is gowing well...
love glynis

 

Ain’t that the truth.

 

Thank you @Ed209,
Your amazing too....
love glynis

 

Group hug

 

I absolutely agree with you Tempest.
This is such a horrible relentless curse.
Very strange that the human body cures itself of many afflictions, fights off all manner of infections, clears up skin eruptions, and so much more, but seems powerless to even help us move towards some sort of compromise with this.

As acceptance and adaptation are all we have at the moment, I keep wondering if hypnotherapeutic techniques could be better targeted to help us more.

Very best wishes Tempest,

Dave x

 

((@Jiri )) Oh of course it does not matter about "that' situation. I am so glad you are here and your voice is heard because you are important. You experience and advice is needed for many of the people here.

I believe we all matter to each other and if one does not agree that is okay. Different views are very important in discussions. And for the most part I had noticed things were going well. But I do have to speak up when "someone" implies that I am unimportant and useless and someone to "ignore".

I am so glad to see you posting!!! I have not had a chance to read all the new stuff here yet.

@glynis I want to say I am so sorry if I caused you stress. That is the part that bothered me most. You are the most open minded and fair person moderator on the board.

@Jazzer you are a part of my inner soul now. I don't know why I felt an instant connection to you when I came here. But I see others feel the same way. Even with your horrible childhood you somehow found your path and the beauty in life with your wife and family and friends.

@Jiri

I understand this very much. I was stricken down with this in 2002. I remember the exact date and time. And I also spent that first year missing what was when I didn't even know what tinnitus was. This stage passes with more time. Weird thing for me now....I wonder where I would be if this never happened? I was entered into law school working for a rather famous attorney as an intern and my life was so privilaged and busy and a bit less observant of the pain people suffered. In a single day it was gone. House bound for one year. Long story for another time.

So it took me on this new path in life.

 

@Starthrower - you are the best.
You stood up for me early on when my posts were being derided, and it meant so much to me then.
I was a newbie, and you were not prepared to see me bullied.
It was an instant connection for me too,
I’ll admit I get a buzz when I see your logo and your name come up.
I know that we are tight.

Who really knows how or why we make such strong connections?
It seems to be an actual recognition of some aspect of a person, that is not necessarily obvious, but depends on ‘reading between the lines’ to understand things that perhaps have not actually been stated.
However it works, we’ve got it Star.
Dave
xx

 

I am glad everyone is okay now. Um...what can I say?

I promise not to use cuss words @glynis. I didn't want to give that thread a bump.

 

Thank you @Starthrower . I'm at a loss for words. I can sense you're a very nice person. You represent the type of people I enjoy being around (a strong personality, genuine, intelligent, and caring). Win win.

I hope you have a great day!

Jiri

 

Throughout a desperate early life I prayed with tears running down my face, day after day.
Guess what happened?
I’ll tell you.
Not one damn thing!

All I wanted was a feeling of presence.
“Please just be with me through all this.”

I would put my arms around a desperately lonely child - and so would you - so would anybody.
If god actually existed then he would too.
So there is my answer.
My logic tells me that the bible story is all mythological fabrication.
(And that’s putting it politely.)

Belief obviously comforts and helps many many people, and I am pleased that it does.
We all need to feel comforted.

Well it failed my test.

 

Everybody cusses at times - everybody!

When we stub our toe on the foot of the bed,
“Oh blast” doesn’t really cut it, does it?

Maybe not on a public forum, but of course we can be goaded by comments that we see as unfair, arrogant, demeaning, dismissive, unacceptable.
I understand completely.
Yes.....sometimes we need to be called to order,
just to draw a line under it, of course.

I can actually think of worse crimes, if I really put my mind to it......

The young lady in this picture doesn’t normally swear.....just when she gets too frustrated.....



(“Hahahahahaha...........xx”)

You can’t beat the Brits when it comes to postcards..

 

@Jazzer,
I love the old postcards and believe me when I say I find the funny cheaky ones to send to family.
A lot of people now just text but you carn't beat a funny card hand written.
love glynis

 

@Starthrower ,@Jazzer,
I will be having my staff badge reinstated today and not giving it up due to a upsetting phone call.
Love glynis x

 

@glynis I didn’t know you had stopped being a staff member in here. That’s great you are taking it back up and don’t let anybody upset you for your doing your job, you are fair and always diplomatic.

 

Awkward group hug

 

Glynis is an awesome mod and a true ambassador for tinnitus and TT. She embodies all the attributes and integrity that a true leader and supporter should.

She is one of the very very few - and I mean minuscule percentage here - that is truly hands on. She runs a real life support group on top of helping out here, and she also donates monthly. It takes a very special person to be able to do all of this. And I’ll tell you all something: if everybody was more like Glynis, tinnitus would probably have a treatment by now.

And to anyone who disagrees: take a long hard look at yourself in the mirror, and ask yourself why?

 

“Good for you Glynis!”

- I give nasty people absolutely NO recognition,
- they do not exist in my world,
- let’s face it - we’ve all eaten bigger things in
sandwiches - as the ancient saying goes !! xx

 

Ed, I couldn’t agree more. Glynis is genuinely one of the most beautiful souls in here. The fact she has so many issues herself and still does so much for everybody is truly amazing. Never hear her say a bad word or get angry either (wish I had that will power and compassion)

 

Absolutely. She is a one-off. I could talk all day about how she has helped change people’s lives. Including mine.

 

Thank you all so much for your lovely words they were truly needed after the same person sent a nasty email to me that Ed has read also.
love glynis

 

@glynis dont let their nasty attitude/words get you down, you’re one of the genuine ones on here. You can’t please everybody unfortunately.

 

Glynis, this forum would not be the same without you here to moderate. I am very happy to hear that you will not be giving up your badge.