Narrated by Colin Farrell, ‘It’s Not Yet Dark’ tells the story of Simon, who has lived with Motor Neuron Disease since 2008, as he embarks on directing his first feature film through the use of his eyes and eye gaze technology. We chatted to director Frankie Fenton about the project.
How did you discover/become involved with Simon’s story?
Kathryn Kennedy who was producing Simons film “My Name Is Emily” along with producer Lesley McKimm of Newgrange pictures, approached me about crowdfunding advice for their film. It was during the meeting we realised that I had actually grown up with Simons wife Ruth back in our home town of Ardee, Co.Louth. They had an idea for making a documentary companion piece to show the world what Simon was aiming to achieve. A little later they asked me to put together a short promo of what I thought a film about Simons story would look like. I put together something I thought might work. Fortunately for me Simon, Ruth and the rest of the team liked what they saw and they kindly asked me to direct.
What was it about this story that inspired you to make it your directorial debut?
I was actually in the process of making another film about climate change (which I’m currently working on now). But Simon’s story was happening in the moment. The fact that I knew Ruth personally helped with that motivation. Simon really impressed me. I think he impresses anyone who meets him. Here was a man who had everything taken away except his spirit to fight for his right to life and his unbridled love for the people around him. Most of us struggle to create anything at all with perfectly functioning bodies but here was Simon, living down the road, in Greystones Co. Wicklow, excelling at it, with just the use of his eyes. It’s an incredible feat. A world first too and I think everybody working with him felt like that that needed the recognition it deserved.
Was it difficult to source early footage of Simon before he was diagnosed with Motor Neurone Disease?
Initially I was filming Simon approaching the production of his debut feature film. So put simply my story was about a man overcoming the impossible to achieve the unachievable. Pretty straightforward. I was allowed to film Simon at home and at work. He allowed me to use his articles and he even told me he might write something for me to use in the film. I had an idea of how the film would look and sound but it was still very early days in the creative process.
Then to my surprise Simon came out with an amazingly heartfelt, best selling, autobiographical book called, “Its Not Yet Dark”, which in essence is a love letter to his wife and kids explaining his story from inside his heart and outside his head. It’s an incredible read and very honest. So we had to make this narrative the spine of the film. The problem was that we didn’t have any footage of his past. Zero in fact. Only a 15 second clip that Ruth’s brother provided us from his stag, filmed on an old nokia phone. So I continued on shooting through the production of My Name Is Emily knowing much of the story would be tricky if not impossible to tell visually.
However on the first week of the edit, December 2015, just before Christmas, Simon asked us to call around to his house, to pick up a mysterious hard drive. When we got it home I was blown away. 10 years of photos, video’s, archive that we never knew existed, showing all of Simons personal home life events and intricacies. It was massively brave and honest for Simon, our chief protagonist, to hand over to us, and we felt privileged to be trusted with the contents. It’s the equivalent of handing over every mobile photo and video on your phone , camcorder, dropbox, everything. This of course changed the films arc dramatically and we were finally able to tell the back story that is contained in “Its not yet dark” the book. We could now delve into particular intimate moments which Simon speaks about in the book, like the last time he danced…or the life changing moment he reached the summit of a Himalayan mountain.
What research did you do into the disease before shooting?
Of course I needed to familiarize myself with the science behind MND/ALS however it was very clear from the get go that this wasn’t a film specifically about the disease, disability or medical science world surrounding Simons life… but, a story about life and love and everything else in-between. Simon is a fiercely stubborn warrior poet. Not a victim. So that was the story that needed to be told. I had a long list of aesthetically differing approaches I thought might compliment Simons creative side on the big screen. So I felt very lucky to be around Kathryn Kennedy and Lesley McKimm who were very encouraging about exploring those ideas and fleshing them out themselves. I would go over what I was thinking with Kate McCullough our amazing DOP who brought her own ideas on what would work or what was possible. I think we were quite brave with our ideas and at least tried to explore as many of them as possible. Some worked in the final edit and some didn’t. It was all very much a team effort which I feel very privileged to be part of.
Colin Farrell narrates the film, how did he get involved?
Colin and Simon are friends. Originally we all talked about using Simons computerized voice to narrate the film but we felt that much of Simons words relied heavily on the emotion and emphasis that his words explore. We suggested to Simon that he ask Colin to narrate his voice and weirdly enough he liked the idea of a Hollywood A-Lister narrating his story! His story is told in the first person therefore Colin literally plays Simon in our film. Which funnily enough seemed to work very well. Not only did Simons old voice sound quite close to Colins natural voice but we really passed the test when Simons mother kept forgetting that she was listening to Colins voice instead of Simon during the film. And we get that all the time actually from friends and fmily so I guess that’s the nail on the head. Colin is of course a true gentleman, an incredible artist and he really brought a unique energy and emotional side to the voice that we simply would not have found with anyone else. I also think Colin is just a massive Simon fan, like the rest of us, and so was able to articulately get the correct detail and emphasis of Simons words.
What was the most challenging part of making the film?
I have to laugh. Funnily enough for all my praises about Simon, I will say that that he wasn’t shy about telling me to put down the camera. To be fair, here is a man directing a feature length film, with his eyes, while I’m awkwardly tracking a camera through his line of vision to get that “great shot”. It became a running joke where Simon would simply say…”not now Frankie”, and I, with a heavy heart, would drop my camera, and head, and quietly exit the room, backwards. He was very generous with his time and space but of course there is a limit.
So finally, when we got to the edit room, seeing all this amazing archive and home videos of Simons past, I got to see that in fact, Simon, being the director that he is, of course, had been filming other people, all of his life. He always seemed to have a camera in his hands. Admittedly it felt refreshing to see and hear his family and friends say “Not now Simon” over and over again though out the years. I guess its the curse of the budding director!
The film had its world premiere at Sundance & went on to other global film festivals, how important are events like these for film-makers?
Well actually we were lucky enough to have our World Premiere in Galway the summer of 2016 which was very special. We picked up two fantastic awards there, one for best doc and the other went to Kate for her cinematography. But getting the film into Robert Redfords Sundance is like getting into the Olympics for independent film makers. It’s a massive boost to everyone involved and gives the film an invaluable profile from reaching an audience and a sales point of view. Park City, Utah is also a magical place that all film makers should try to go to regardless of having a film there or not. Advantages of making it there mean that other festivals world wide want the film simply by proxy which is also great. This year for example we’ve screened the film all over the world. Taiwan, Sydney, Iraq, Serbia, Greece, Poland, Belgium, Italy, Canada, the list goes on, France, USA, Germany maybe Beijing later this year. But Sundance lends a credence to the film allowing it to be taken that bit more seriously by critics and buyers alike so in all, the importance of something like that cannot be over stated. In saying that, when it comes to film, its truly blind luck. Its subjective. There is no formula to getting the film into a competition as big as that. Its in the hands of the gods so we all feel very lucky to have been able to get Simons story out there to such varied international audience.
What do you hope audiences get out of the film?
We have gotten so many different reactions from the film to be honest. Some surprising. Some not so much. Weirdly some people feel guilty when they see how much Simon can achieve with just the use of his eyes but I think that that misses the point. This is a film about a man, ultimately being humble about the love and support he has from all the people around him. The love he has for those people. His friends, and family bind that love and it gives him strength to achieve anything he puts his mind to. I think that’s the lesson I would most like to resonate out there. We can do anything with proper support around us, and we achieve that with unbridled and unbroken love.
ITS NOT YET DARK is at cinemas from October 13th