I’ve been meaning to post a bit about writing The Black Box films, and how they came together. When I wrote them, I drew inspiration from a number of sources, but a key turning point was when I listened to Peter Gabriel’s “Wallflower” for the first time.
For those of you who don’t know it, “Wallflower” was written in 1982 and it highlighted the torture of political prisoners in Central and South America at the time. Gabriel was heavily involved with the work of Amnesty International during the 1980’s and he wrote this to raise awareness of what was going on there. While the military dictatorships are now gone from Central and South America, this sort of abuse still happens in many places elsewhere around the world.
I first heard this song back in 2015 when I was working on the scripts of The Black Box. I was immediately struck by “Wallflower” as it resonated a lot with my experiences of living with ME. At the time, the script for The Black Box was not finished – some of the ideas were there but not all of them. What is so clever about these lyrics is how well they can apply to people who are not facing political or religious persecution, but are facing other struggles. This was the moment when ME went into The Black Box and the Man in the black box had ME:
“Six by six, from wall to wall
Shutters on the windows, no light at all
Damp on the floor you got damp in the bed
They’re trying to get you crazy get you out of your head
They feed you scraps and they feed you lies
To lower your defenses, no compromise
There’s nothing you can do, the day can be long
You mind is working overtime, your body’s not too strong
Hold on, hold on, hold on.”
As someone with ME, this song resonated with me a lot. Despite the problems that come from having chronic pain and constant fatigue, the worst aspect is that hardly anyone knows what it feels like and nobody can agree to fix it. In addition, the bits of advice can often conflict with each other – which is why “They feed you scraps and they feed you lies” feels very much like trying to get a diagnosis for ME – a complicated and bewildering process which I went through twice.
“They put you in a box so you can’t get heard
Let your spirit stay unbroken, may you not be deterred
Hold on, you have gambled with your own life
You faced the night alone
While the builders of the cages
Sleep with bullets, bars and stone
They do not see the road to freedom
That you build with flesh and bone.”
Having ME can very much feel like being a prisoner, trapped in your own body, unable to do anything and shut off from everyday life. These lyrics capture the feeling of how trapped and isolating it can feel – only all of this happens internally, with the mind and the body imprisoned by each other. It was then that I realised that this film would work in a black box – in more ways than one.
“They take you out the light burns your eyes
To the talking room it’s no surprise
Loaded questions from clean white coats
Their eyes are all as hidden as their Hippocratic Oath
They tell you how to behave, behave as their guest
You want to resist them, you do your best
They take you to your limits, they take you beyond
For all that they are doing there’s no way to respond
Hold on, hold on.”
These lyrics are perhaps the most controversial aspect of having ME – there is currently no effective treatment. While there have been a number of clinical trials, these have been controversial, as those carrying out the trials have continued to stubbornly maintain that ME is a psychological condition, despite the condition being labeled as a physical condition by the World Health Organisation. The treatment that is recommended so far is Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET). Having undergone CBT, I can say from my own experience that it helped me adjust to living with ME, but it certainly did not fix the condition as I still have it. As for GET, it means well in theory, but the reality is, it cannot be implemented, even at a very basic level, unless the patient’s energy levels and routine are consistent. I have had experiences of GET myself, but I would refuse to do it if I was not well enough, as this would have made my symptoms worse. Unfortunately, this treatment can be rushed out before patients have been able to detect and work out their base energy levels, which can lead to some terrifying consequences, as it can leave many patients with even less energy than before they began GET.
“Though you may disappear, you’re not forgotten here
And I will say to you, I will do what I can do
You may disappear, you’re not forgotten here
And I will say you you, I will do what I can do
And I will do what I can do
I will do what I can do.”
This is perhaps the hardest part of the song for me to swallow – as no-one seems to know or care much about people with ME outside of the ME community. This was one of the reasons why I wanted to make The Black Box about ME but write the story and frame it in such a way so that people who do not have the condition. At the moment, the level of stigma and the lack of understanding is comparable to HIV in the late 1980’s – only ME has been around much longer.
Perhaps you may feel lost, and uncertain how you can help someone with ME, considering we can be so isolated and our condition is so misunderstood. You could donate to biomedical research (which realises that ME is a physical condition), you could donate to Action for ME, which is a great resource for understanding and learning more about the condition, or you help us make “The Black Box” by contributing to our crowdfunder. I hope, in some small way, that this film will begin to break the silence surrounding ME and those who have it – it’s a complicated problem, but the solution has to begin somewhere.
There are a number of versions that Peter Gabriel has done of Wallflower, but the link I’ve included in this post is his live performance on Letterman in 2011 – as this was the first version of the song I heard – it’s one of my favourite songs he’s done.
If you have ME, may your spirit stay unbroken, may you not be deterred. Hold on. And I will do what I can do.