Voices from the shadows.
~~~If you would like to help you can simply by watching a film or donating a £6 DVD to my campaign~~~
"You've got the words to change a nation But you're biting your tongue You've spent a life time stuck in silence Afraid you'll say something wrong If no one ever hears it how we gonna learn your song?"
I want to shout, I want people to listen, most of all I want to get the world watching "Voices from the shadows". I have severe M.E, this means I spend every day and night curled up in bed, in total darkness and often in total silence too. Do you know an 11 year old child? Think of every moment in their life, their first steps, first day at school, moving to secondary school, being made to tidy their room, going out to play, eating dinner every night. Every single day of their life I have spent curled up in bed. We could count how many days in the past 11 years that I've not spent the majority, if not all, the day and night in bed. Every day for 11 years. It's crap, pure and simply, M.E is crap. It can be mild enough that people can work, it can be severe enough that people are totally paralysed (I can't explain what it's like to not be able to even wiggle a finger), but do you know the worst thing? It's people's attitudes to the condition. From doctors, nurses, friends, media, some families (thankfully not mine), constant stupid comments, constant judgement and stress. I won't even begin to go into problems I have had with doctors who don't understand both in the past and even this week, if you haven't experienced it, it is quite unbelievable! Some attitudes are changing but only due to people campaigning. However how do you get your voice heard when you can't even whisper 'hello' to your carer?
The documentary 'Voices from the shadows' deals with that, 5 families telling their story, some top experts giving short descriptions and facts (did you know M.E is Neurological and has been classed so by the World Health Organisation since 1969 yet many doctors think its a mental health problem?). As soon as I watched it I wanted the world to see it but didn't feel able to ask people. The documentary finishes with the words 'but for some patients time is running out'. My friend Emily is in it, after it was made, time did run out. Emily died. Yes M.E, often combined with lack of medical care KILLS. Emily's death spurred me onto a mission to get people watching the DVD. I was in hospital at the time, thankfully a very rare place that mostly understands M.E but some of the staff said they would like to see it. I leant the DVD to a nurse in the afternoon, by her lunch time shift the next day she had watched it twice, ordered books on M.E and said she is questioning everything she has ever heard the condition. Apparently she had had very little experience of M.E and the first patient with it was a negative experience but after watching the DVD she wants to help people with M.E. She wasn't alone, journalist Sonia Poulton was a disbeliever, until she saw Voices from the Shadows and is now campaigning, read her fantastic reaction here So what can you do to help?
There's a few ways, firstly by watching it (either purchase the DVD, attend the screenings or watch online at www.mubi.com) and secondly if you would like to support my campaign then I would really appreciate it if anyone would be willing to donate a DVD to me please. I have purchased lots but given them all away, hopefully they are still circulating helping raise awareness. They are only £6, and can be purchased here My address is Vikki, C/O Post Pals, POBOX 278, Leatherhead, Surrey, KT234WN Thank you for reading, if we can change just 1 persons attitude then the world will be a better place for those with the condition.
"Read All About It" You've got the words to change a nation
But you're biting your tongue
You've spent a life time stuck in silence
Afraid you'll say something wrong
If no one ever hears it how we gonna learn your song?
So come on, come on Come on, come on
You've got a heart as loud as lions
So why let your voice be tamed?
Maybe we're a little different
There's no need to be ashamed
You've got the light to fight the shadows
So stop hiding it away
Come on, come on
I wanna sing, I wanna shout
I wanna scream 'til the words dry out
So put it in all of the papers, I'm not afraid
They can read all about it Read all about it,
At night we're waking up the neighbours
While we sing away the blues
Making sure that we remember,
yeah Cause we all matter too
If the truth has been forbidden
Then we're breaking all the rules
So come on, come on Come on, come on,
Let's get the TV and the radio
To play our tune again
It's 'bout time we got some airplay of our version of events
There's no need to be afraid I will sing with you my friend
Come on, Come on"