In my role as ambassador for the British Tinnitus Association, I was invited to give the opening speech at the charity's annual conference this year. The event took place at The Wellcome Institute on Euston Road in London in the autumn.
This is the story I gave them, and was first published in CMU Online. I feel the need to put it here because the issue is so important, and The Huffington Post UK has the audience it needs to reach. Also there is still so much ignorance and misconception about tinnitus out there. The majority of people, and many GPs think it's an ear issue when it's a brain one, and the whole deafness thing in the press at the moment, with hearing loss being reversed, has people assuming that tinnitus and hearing loss are the same. They are not. I have almost perfect hearing, yet I have awful tinnitus. Many of my colleagues can say the same thing. Hearing loss and tinnitus are two totally separate issues and the link between the two is nowhere near as strong as people think. If this issue interests you please read on...
My address to the BTA Annual Conference:
Mark got tinnitus when he was 24 years old. Some of us get it worse than others, and Mark got it bad. He wasn't aware of the BTA and he, like most men, didn't really like talking about how he felt to those around him. He wasn't one of the hundreds of kids that call, text, tweet, or email me via Facebook for advice. Mark's first and only line of defence was his local doctor.
When in his GP's surgery, Mark told his doctor what had happened. The GP turned his back on him and silently reached for a large, dusty medical book on the upper shelf behind his desk. He thumbed through the pages until he arrived at the letter to and read the paragraph a man had written decades ago, explaining what he, at the time, thought tinnitus was.
Then Mark's GP told him that it was probably permanent, that he should "deal with it like an adult" as there was nothing he could do. He then suggested a private audiologist, adding that Mark shouldn't waste NHS resources, and that he was very busy and needed to see the next patient.
One week later, Mark went back to his GP. He had the manic stare of a man who had been awake for most of that week, with thick black circles under his eyes. Between thousand yard stares, Mark said he couldn't deal with it any more and that he wanted to be referred to a surgeon. He wanted to have his auditory nerve severed. Mark had decided he'd rather be deaf than have tinnitus.
His GP - astonishingly - obliged, and a surgeon - even more astonishingly - was ignorant enough to go through with the procedure. Mark had himself unnecessarily mutilated, and became deaf, BUT... with tinnitus.
Two days later, Mark's flatmate, Ben, found him hanging above a pool of his own blood, in his bedroom.
My involvement with the BTA is a journey, a quest to understand, come to terms with, and make up for Mark's story. And the others like Mark.
So let's quickly look at each stage of Mark's story:
First how did Mark GET tinnitus? He got it through lack of education. He just didn't know that going to raves and clubs and sticking his head in a bassbin would lead to his brain damage - and we know that this condition has to be brain damage because of the result of that mutilation.
Next, his GP and that surgeon. I know there are many great GPs out there, and wonderful, knowledgeable surgeons, but we all know there have been some shocking examples of ignorance towards tinnitus in the worryingly recent past. I want to commend the BTA for making last year's tinnitus awareness drive GP focused. Thanks to them, its now highly unlikely that Mark would ever be met with such a lack of sympathy and wall of ignorance.
And I know we're reaching out to the wider medical community to make sure that if a Mark does slip through the net, we have a failsafe, and that no surgeon would ever perform that life-ruining operation again.
The most fascinating thing, however, that we can take from this, is proof that tinnitus is not an ear issue, but a brain one, or more probably the connections between ears and brain. So Mark had unwittingly become a human guinea pig in the quest to find out what tinnitus is. The truth is we still don't know for sure. I feel we're close but we're not there yet. For that we need more research, and for that we need more funding.
The fact he committed suicide is irrelevant to what we're talking about today, but that's another issue I'm trying to deal with as the new Chair of the Music Board of the Campaign Against Living Miserably (www.theCALMzone.net) - the male suicide prevention charity. With CALM, the main issue is awareness and communication, and this is equally true, I feel, with tinnitus, and therefore the way forward.
We've driven tinnitus awareness to an all time high. We've helped spread the word through some great support in TV, radio, magazines and websites - not least our own excellent, informative and supportive BTA site.
Our ultimate focus now has to be awareness in government. Successive British governments have spent millions upon millions of pounds educating and informing us, via TV, radio and print, that we might hurt ourselves lighting a firework. In recent times approximately 1000 people each year have required treatment for firework injuries at hospital casualty departments. 5% of these are classed as 'serious accidents' requiring a stay of one or more nights in hospital.
So, that's 50 people per year who have serious, possibly permanent damage due to fireworks. In the 2011 census 56,076,800 people admitted to living in England and Wales. That's one in a million for God's sake... To be precise it's one in 1,121,536 people.
One in ten people in this country has tinnitus. ONE. IN. TEN. I don't have to tell you how serious it is, or how permanent. Do you know how much the government has spent - ever - on tinnitus awareness? Or prevention? Like they do with fireworks? Reach into your pocket and pull out some change. Whatever you find there is that much more than what they've spent.
Not a single penny.
Not one public information film, not one radio ad, not even a poster, to let people know the dangers of loud environments and that people could, like me, get brain damage just by being there unprotected.
How long will it take for the penny to drop in Westminster? MPs only do what we ask them to do, as constituents. They're only aware of what they read in the broadsheets and see on the News At Ten.
So we have to make them aware. We have to ask them to pull their fingers out. Write to your MPs, talk to your friends, write on your blog, tweet, Facebook your support, spread the word far and wide that one in a million in this country are, thus far it seems, more important to the government than one in ten. Tell them you think that is UNACCEPTABLE.
I hope you have a good day, if you're here to learn I hope you find wisdom, if you are here to come to terms with your own tinnitus, I hope you find comfort and reassurance. If you're here to communicate and to network, I hope you find kindred spirits and open arms. Most of all I hope you remember Mark's story, and that together, we can prevent that from ever happening again.
NOW THE REALLY IMPORTANT BIT! The above is (with some slight tweaks) what I read out last week to kick off the BTA Conference - below is just for you...
I'm toying with the idea of a combined fund-raising-awareness-raising project now, for which I need some of your help.
What I see is an album, probably a double album actually, maybe even a triple, where every song has been donated by a musician, a DJ, or a producer with tinnitus. CALM released a similar record which had tracks by everyone from Noel Gallagher to Everything Everything.
I want to aim high for this one, perhaps Coldplay would donate a track as Chris famously lives with tinnitus, same goes for Adam F right through to Will.i.am. Please forward this to any artist, agent, manager, DJ or producer that either has tinnitus, or that you think may be able to help realise this idea.
I think we could come up with a wonderfully eclectic album that'd raise a little much needed funding for tinnitus research and, equally importantly, be invaluable as an awareness raiser for the BTA and for tinnitus in general. I'm going to need songs, tunes, remixes, versions, anything considered by any artist with tinnitus or any band with one or more tinnitus sufferers.
I'll need a record label to put it out, and I'll need somebody to help co-ordinate everything (I guess this could be somebody at the label). We'll need a venue for the eventual launch party and any brands that would like to help out, with drinks, food, anything on the night that'll help keep the outgoing costs down.
If there is a voice in your head right now saying "I could do that" or even, "I know someone who could do that" with respect to any of these, then please get in touch with me via the usual channels:
Thank you for your time, and thanks, in advance, for any help you can give to the BTA.
Since writing this, Chris Martin, of Coldplay, has given his blessing for a Coldplay track to appear on this record, so has Danny McNamara from Embrace, and a host of other brilliant artists, singers, producers, DJs and bands. Hand on heart thank you to you all. Hopefully this will raise some awareness out there and help this album gain momentum. I now have some amazing music, but I still need a label to put it out on....