Shoes

(written after attending the Millions Missing Demonstration in London, UK on 12th May 2018)
By Thom Jackson-Wood
Shoes…
Shoes everywhere
This isn’t a clear-out sale at a shoe shop It’s a protest – of absence.
The absence of living that is a side-effect of having #ME
A way for people with #ME to feel present when they are not able to be there.
And to people who do not know this illness, how many lives it has taken.
It’s a protest to #ReleaseTheFunds – funds badly needed to help find a cure, or even a treatment…
A cure to an illness which has left #MillionsMissing
An illness which has been compared to late-stage AIDS in surveys which determine quality of life (or lack thereof)…
An illness which understanding about has made no progress since the 1980’s and for most of the 2010’s felt like it was going back due to the PACE Trial.
It’s rare to find an illness where people are protesting to get the majority of medical science to stare at it directly in the face and call it by its name – Myalgic Encephalomyelitis or #ME But such is the world that we live in.
And this why we’re making a film about it. “The Black Box: Listen”
A film about an illness that refuses to be taken seriously by most of medical science, but also refuses to go away.
An illness where many of the people protesting are too ill to attend in person. So they’re protesting by proxy.
Protesting so that you can understand what it’s like to live life in their shoes.
Shoes…
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#MillionsMissing 2018: Broadcasting House, London

This year, Rebecca and I wanted to get more involved in the wider campaign to have ME recognised as a legitimate health condition and release funds for biomedical research, and we went to the London protest of #MillionsMissing on Saturday 12th May. We did this because we felt it would be wrong to make a film about ME but ignore the wider community. And more importantly, we recognised that not everyone who has ME is able to protest in person, due to the severe fatigue that it causes. In my case, my ME causes severe chronic nerve pain but my fatigue level is quite mild – as long as I use my wheelchair, I won’t be that badly affected. As a result, I feel strongly that I should use my voice and body to speak up for those with this condition who are unable to speak for themselves.

Rebecca and I were also be fortunate to be joined by Caroline Day, a woman with ME who came to our quiz night in Hoddesdon in March and shares our passion to make the condition better known.

And this year, it really did feel like the MillionsMissing movement was beginning to gain attention outside of the ME world. From its beginning, Millions Missing has been an international movement, as people are affected with ME all over the world, but now it can attract news coverage from various countries. The BBC did some great coverage this year, including a full-blown Newsbeat documentary on the condition, as well a number of supporting articles. As such, it felt appropriate that the London protest for Millions Missing this year took place at All Souls Langham Place,  a church right outside BBC’s Broadcasting House.

Various landmarks across the UK were lit up in blue for ME Awareness, including the Berwick Royal Border Bridge, the city walls of York and the Tyne Bridge in Newcastle. The Tyne Bridge campaign was organised by veteran ME fighter and campaigner Anita Roddam, who unfortunately was not able to see the fruits of her hard work in person. This is because her ME is so severe it has left her bedbound since 1987 when she was forced to give up her teaching career, Now, she teaches people about ME awareness through her social media accounts.

I mention Anita as an example, as while her condition is severe, it is far from unique. I’ve had the pleasure of getting to know her over this month, as she was a close friend of my aunt Sue Firth, who passed away ten years ago this month from complications of severe ME. As I became more aware of the political struggle going on with ME research, I felt it would be best to represent my aunt at a Millions Missing Protest.

On the day of May 12th it was raining, but that wasn’t going to stop Caroline and myself. Having a lack of energy means you get very skilled at focusing the energy you do have on the things that matter. And this mattered to us. That being said, it was still very moving and surreal to see the steps of All Souls Langham Place filled with the shoes of people with ME who, like Anita, were unable to attend in person. It inspired me to write a poem, which I’ll put in a separate post.

Throughout the demonstrations, there were cries of “What Do We Want? – Biomedical Research,” and “When Do We Want It? – Years Ago,” as well as a heartfelt rendition of Bob Dylan’s “Blowin’ In The Wind,” but with lyrics changed to describe the pain of people living with ME, the biomedical research that is so badly needed and how the PACE Trial has made things worse.

There is a Vlog on YouTube that was put together by the freelance journalist Sophie Eggleton who attended the protest and she also has ME. Her coverage gives you a good idea of what happened, and it includes the song, You can find it here:

There was also a reading of a poem done by Jessica Taylor-Bearman, who appeared in the groundbreaking documentary film “Unrest” (2017), and was well enough to attend in person, This was followed by a set of moving testimonies, from people with ME and their carers. Perhaps one of the most moving moments was when a teenage girl was about to speak, but she ran out of energy just yards before being able to speak into the microphone, and she was forced to stop and sit down on a rug nearby. In the ME community, this is known as ‘crashing’ – I have experienced this myself a number of times, but to see it happen to someone else in such a visual way only served as a stark reminder how ME can ruin any plans you have – even at the very last minute. In the end, her mum had to read out her piece instead.

Caroline and myself also spoke near the end, but rather than speak about our own experiences, we spoke about people we knew who had ME. Caroline read out a piece from her friend Erszebet (or “Sherbet”) which described how ME had stolen a great part of her life, while I spoke about my aunt. What was interesting about my testimony was that I had grown up knowing a family member with severe ME, but then also experienced it myself in a somewhat milder form. I think closed my testimony by quoting part of Peter Gabriel’s “The Wallflower” – which is the most effective way of describing living with ME in pop music that I’ve heard – it’s well worth a listen.

Although they didn’t catch the opening of it, my testimony was filmed on camera by a lady called Bettie Hough. I hadn’t known she had done it until I saw it circulating around Facebook. I was keen to get a copy of it, not for myself but for my aunt’s family. You can see it on Facebook here:

After the protest disbanded, we made our separate ways home – but I found myself still processing it days later. I’ve been to a couple of demonstrations before, but this was the first ME awareness one, and it remains the one I remember most vividly.

I think it’s because of the shoes, representing people who couldn’t be there in person. At first you might think it’s because they’re lazy or can’t be bothered. But once you begin to understand why they are unable to be there, the reality begins to sink in.

And then it hits you how big this problem is.
A gaping, hole the size of millions of people,
Each person was stolen by ME, leaving a pair of shoes.
As such, there are Millions Missing, all over the world, because of it.
These are the shoes no-one wants to stand in. But millions do.

Help us change that for the future:

Millions Missing Website:

#MillionsMissing

Sources:

ME Awareness Week – Events Guide

https://www.theguardian.com/commentisfree/2018/may/12/to-the-millionsmissing-with-mecfs-something-remarkable-is-happening

http://www.bbc.co.uk/news/av/newsbeat-44037216/me-and-me-how-do-people-cope-with-chronic-fatigue

https://www.berwick-advertiser.co.uk/news/bridge-to-turn-blue-to-raise-awareness-of-me-1-4737002

https://www.yorklibdems.org.uk/turning_blue_for_m_e_awareness

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Remembering Sue Firth – 10 Years On

Hi everyone, we’re still here! Things are happening, but most of post-production goes on behind the scenes. As such, we’ve been quiet for a little while, but still we move forward, inch by inch.

In some ways, this is much like having #ME. Each milestone is small, but each step is a massive undertaking.

Thom is not the first member in his family to have #ME; the first person who became sick with it was his aunt Sue Firth, who passed away from complications from the condition on 9th May 2008.

With it being #MEawareness month, we’re going to be bringing in some new content, but today feels particularly poignant as it’s now ten years to the day since Sue passed away.

Tonight we remember.

In many ways, Sue was a pioneer. Before the days of Facebook, Twitter and other social media apps that the ME community rely heavily on to communicate with each other today, she was able to contact people with severe ME by email and they began to form the 25% ME Group. This website is run by people who the are most severely affected with ME and it provides a support network and a publicity team to counter the many lies that surround this condition. Sue was interviewed on national TV and radio about ME and was particularly active during the 1990’s and 2000’s, but her condition worsened after 2007.

Fast forward a decade, and many things are still the same. When the only people who are advocating for change in #ME diagnoses and biomedical research have #ME themselves, progress is very slow. And yet, the Millions Missing movement, and the success of the film Unrest show that the tide is finally beginning to turn. All of which began by people with #ME communicating and mobilising as a force, even though many of them are bedbound, either part-time or full-time. And from this community grows both the Unrest film and the Millions Missing Movement, one of the first films to be powered by social media and empowering people who have been forced to hide in plain sight.

As a fitting tribute to Sue, the best thing to do is to give the 25% ME Group some publicity and share their page here. The Black Box Team have been reading their work since 2015, and some of their experiences helped inspire our films.

RIP  Auntie Sue. Ten years on, you have not been forgotten.

Thom

Link to the 25% ME Group Website

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Happy New Year! Special Thanks…

Hi everyone! Happy New Year!

Apologies for the long delays between posts – Rebecca and I are still working on The Black Box, and we have posted updates, but we’ve not been able to always link them on the website. As we’re now into post-production, we will be posting more frequently on here. There is a lot of new content to show and share with you all!

However, we’d like to say a big THANKS to everyone who has supported us in this venture so far, either financially, logistically or emotionally. It’s a been a long journey, and we couldn’t have made it this far on our own.

Here is a list of everyone who has backed our project with £10.00 or more, either on one of our two crowdfunding campaigns or offline:

Indiegogo Campaign 1: (Winter 2016/17)

Tony & Jane Eastaugh, Alex Usborne, Clare Usmar,  Gavin & Jacqui Matthews, Paul Long, Debbie & Kevin Abbott, Michael Smith, Chris Newman, Michelle Craig, Caroline Werk, Azeem Khan, Ken Boyter (The Bottled Imp), Michelle Craig, Martin & Maria Lawford, Philippa Probert, Sam & Sian Woodward, Clementine Beeson, Ruari McGowan-Smith, Eamonn Mulcahy, Christine Till, Ella Bee Glendining, James Frecknall, Pablo Bubar, Daniel & Sara Hill, Peter & Sheila Dane, Allan & Sara Biddulph, Paul & Lucy Davies, Michael J. Richardson, Tom Kindlon, Jan O’Malley, David & Pam Willis, Eirik Knutsvik, David & Sue Ilott, Maria & Colin Cheetham, Catriona & Stuart Baker, Erin Laverick and James Firth.

Indiegogo Campaign 2: (Summer 2017 + InDemand)

Pauline & Nigel Rhodes, Chloe Swinchatt, Molly Sullivan, Alyxandria Chipperfield, Amanda Nield, Claire Gristwood (Seventh Realm), Paul & Rosie Watson, Mike Kelly, James Barnard, Barrie & Chris Hozier, Vicky Earll, Kevin Davies  (Deadstar Publishing), Andrew & Gill Du Boulay, Charles Timson, Rachel & Graham Quinlan, Daran Peary, Inessa Amber, Sean Scott and Philip & Jo Holbourn

Offline Donations:

Joyce Speight, Mavis Jackson, Natasha & Tommy Denton, Ray Bulpitt, Alyson & Lyle Watson, Margaret Colville, Sara Boyes, Nathaniel Hamer and Alison & Paul Jackson

Double Dippers! (People who have contributed more than once – MASSIVE Thanks to you guys!)

Mike Stuchbery, Eric, Tracy & Hannah Eyre, Billy Hicks, The Organ Family, Michael Firth, Adrian Ndoni and Kate Miller

Once again, a massive THANKS to everyone who has helped us get this far!

Yours

Rebecca Holbourn, Thom Jackson-Wood and The Black Box Team

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Thanks!

Chuffed to be 89% of the way towards our goal of £1500 for Block 3 with just 2 days to go!

Not far to go now! Thank you all so much!

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Thank you!

We’d just like to take a moment to thank you all for your positive support and contributions towards the creation of The Black Box films!

We are thrilled to be 70% of the way towards our goal of £1500 for Block 3 with most of a month still to go!

Because of this fantastic start, the campaign is now trending on Indiegogo – and some of our contributors are chipping in after seeing our fundraising featured. Nice going, everyone!

However, the last two weeks have not been easy in terms of production – regrettably, one of our actors has been forced to withdraw from the project, and due to time constraints, we have had no choice but to postpone our shoot for the summer, and we aim to reschedule it for the Autumn.

We would like to reassure everyone that the Black Box team are completely committed to the project – every penny that has been contributed so far will be spent on making this film happen. We have been working on this film in stages since 2015, when we first shot the trailer, and we will continue to work on it until it is completed to the highest possible standard.

Many, many thanks for your support, patience and understanding,
The Black Box Team

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The Wallflower – Peter Gabriel

Hello everyone

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.

Thom

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The BFI Future Film Festival: How It All Began…

This week, Rebecca and I went to the BFI Future Film Festival, held at the BFI Southbank Centre in London, now in its tenth year (Gosh!). The festival ran from the 16th-19th February, and between us, we were there for the whole four days.

We’ve been attending the BFI Future Film Festival (also referred to as Future Film Fest or simply FFF) since 2014, and it was where Rebecca and I met for the first time ever. Little did we know at the time how closely we would be working together in the future.

IMG_0189

The Possibilities Are Endless…

After meeting up the following year with Rebecca at the BFI Future Film Fest, we discovered that we could work together. Rebecca was a director looking for someone to help produce her ideas, and I was looking for a director who could take one of my screenplays and come up with a vision that looked fantastic. In short, we were both trying to make stuff happen. I remember that in 2015 one of the sessions was to watch The Possibilities Are Endless, a moving documentary about the musician Edwyn Collins who had had two cerebral hemorrhages in 2005, resulting in aphasia, and showed how he was able to use his music to rebuild his life, and he was able to resume his musical career two years later. Feeling inspired, that evening, I began networking with a frenzy, and drew out the title of the film on my notepad.

IMG_0186

Before 2015, I was getting frustrated. I never seemed to get any of my films made, despite my best efforts. I had been writing screenplays for seven years, but I couldn’t get any of them produced. I had been trying to write a film with the tightest budget in mind that would still work well as a story. It was a simple two-hander, with two friends in their early twenties skimming stones into the lake. Only one problem, I couldn’t afford to hire a lake! I had also written a two-hander where two strangers meet on a tube train, but again, I couldn’t afford this. Therefore, I had a problem.

“I might as well write a film that’s all set in a black box…”

This was the first time I thought of writing  a film in a black box. Why? Because I thought it would be cheap. And I thought it would be a good joke, with a slice of sarcastic humour thrown in for good measure. However, everyone I mentioned it to that evening thought I was being serious. It was at this point that Rebecca said that she’d direct it. And then we met Maria Lättilä, who was so passionate about it, that she’d immediately offered to help me produce it. A plan began to form…

The BFI Future Film Festival also provided more contacts who were willing to help, in particular, Matthew Mulcahy, who became our sound recordist on Awaken and The Black Box, and later, Pablo Brown-Jennett, who became our Assistant Director on The Black Box.

Becca & Thom

18 months later, here’s Rebecca and I on set…

So, if you’re aged 16-25 and you really want to get into filmmaking? The BFI does a lot of great work for young filmmakers just beginning to start out. If it hadn’t been for the BFI, we wouldn’t have found some of our key personnel, Rebecca and I wouldn’t have met, and I never would have had the idea to write a film set in a black box (let alone two!)

How did that happen? That’s another story for another day…

For more information about the BFI Future Film initiative, you can find the link here. We strongly recommend it.

http://www.bfi.org.uk/education-research/education/bfi-future-film

Yours

Thom Jackson-Wood

 

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Approaching The Black Box Characters As The Director

When approaching the characters of The Black Box as the Director, I hit a wall, that is to say.. a complicated little truth..

There is only one character: The Man.

Of course, nothing is that simple. As a person, he is troubled, conflicted and torn in every direction but the one he really wants. For him, nothing comes easy – even before he became sick with ME he struggled to connect to the world around him because of his high-functioning autistic spectrum disorder. This disrupts the smooth flow of life that most people experience –  “a bog standard, switch on your TV and 99% of everyone you find” understands. How do people find life so easy?

While Autism is becoming more recognised and can now be diagnosed much earlier in life than before, for The Man, the world is too full. It’s full of people, noise, light, bumps, emotions, distractions and clutter – stuff that gets in the way.  I have tried to include an element of this in the way we edit at times. This can be seen most clearly in the opening shots, similar to how someone with autism can focus on objects in great detail, at the expense of not always grasping the bigger picture.

When we meet “The Man” in The Black Box, he is extremely tired but unable to sleep. ME has stripped away his livelihood and dignity, and has left him in lingering, chronic pain. He moves through life at a snail’s pace, with every simple task becoming a huge undertaking, thanks to his limited energy available.  Forgotten or ignored by everyone, including those in society who should care for him, he feels lost, left behind and broken. At moments, all that consumes him is pain, but through determination, he powers on, trying to make things better for himself and connect with the outside world.

“The Muse” represents The Man’s artistic ambitions and creative spirit, thwarted by his disabilities. When we first meet her, She is angry, annoyed and bitter, because she provided him with so many stories and characters, but he has been unable to complete any of them. With so many characters inside of her, The Muse’s persona changes rapidly from second to second. At first, it is the negative side of her that wins, due to her anger and frustration, but as The Man begins to listen to her again, her softer side is revealed as her anger abates and their friendship, their creative union becomes more apparent, and she can once again push The Man on towards new projects and hopefully a brighter tomorrow.

“The Fallen Angel” is the most dramatic character. The oldest and most fully-fleshed out of The Man’s many characters, he has been waiting to be written for a very long time. The main antagonist of his own story, The Fallen Angel used to give The Man nightmares and it is The Fallen Angel’s own anger and the strength of will which turns him into a fully fleshed-out character. Arriving with a purpose to track down his younger brother, The Fallen Angel uses The Man’s own words against him, telling The Man that they are family. He is brutal, powerful and relentless, striking until no more can be struck; The Man’s own worst nightmare made flesh.

The final character is “The Black Box” itself. The confines seem clear-cut, with four black walls, and no way in or out, but how could that be true for a creative mind? The Man is tormented by the earnest Muse and the characters he ignored. Where is he to go but back to bed? Every item that surrounds him holds importance and the ones he’d rather forget are most prominent, in particular his wheelchair, his crutches and the nappies he wears for his incontinence. His only release and progression has been through books and fiction and yet these clutter his way, scattered in all directions. Of all the characters, the Black Box itself is the most mysterious – it never speaks but is always present, shrouding and affecting everything. At times it feels like it is a visual representation of The Man’s ME and Autistic Spectrum Disorder, trapping him inside and forming a barrier between him and the people outside of it.

Encapsulating 4 main characters in one space where there really is only one being, tormenting itself, is an enjoyable challenge. While each character (or space) has their own moment, the bleakness is ever present. The is a never ending feeling of being stuck but caught in a never ending advancement into the shadows. What really lurks in The Black Box?

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Welcome

This site will be growing over the next few weeks as we explore our minds, experiences and life inside The Black Box. 

Our site is playing host to an Advent Calendar as we prepare and launch a crowdfunder to build The Black Box. 

Enjoy your look around, marvel at Maslow and meet the minds behind the creations ahead. 

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