Scottish filmmakers Emma Davie and Morag McKinnon originally thought they were making a short film about Motor Neurone Disease (MND) but, as they worked with architect Neil Platt, diagnosed with the fatal condition, aged just 33, it became clear they were working on something bigger.
Paul Cockburn: How did I Am Breathing, come about?
Morag McKinnon: After Neil’s diagnosis he started writing a blog, partly to keep in touch with family and friends, partly to raise awareness about the disease. He was writing newspaper articles, he was doing TV interviews; he wanted to do something. Basically, the blog alerted us to his need and we started discussions about it.
Did you have to agree what the film would—and wouldn’t—include?
Emma Davie: At the beginning, we didn’t know we were making a big film. We were trying to feel our way into the situation; I, for one, had doubts about it being the right thing to do. We were thinking that, at the very least, we could make a short film for the MND Association, but the power of Neil’s character and his ability to communicate gradually made us feel we could do something much bigger.
We talked to Neil and his wife, Louise, about how the filming might be. Neil very much wanted to use it as a campaigning tool; he’d speak a lot to us about MND. I remember at one stage having a conversation with him, telling him it would be stronger for the film if he let us film him going about his daily business and dealing with it, rather than communicating through words. Somehow, that says much more.
But Neil also came in with ideas. One of the first things we did was film the breathing machine which controlled his breath, and which he couldn’t live without. Neil turned and said: “Oh, yes, I think that’s good to film that. You should begin the film with the sound of that breathing machine, and it should carry on throughout the film, because it’s the soundtrack of my life. And, at the end of the film, you should stop that breathing sound so that everyone will know I’m gone.”
And that’s what we did.
Morag McKinnon: Also, he’d call us in at certain points to film things like him being washed and dressed; even one occasion when he was going to the toilet, just to show how difficult that was. There were certain things we thought: “Oh, that’s too much.” He was definitely opening it up so that people could see.
Were you using small cameras?
Emma Davie: We used a small HD camera, for two reasons. We didn’t have a budget. Also, in a way we didn’t want to hide the rawness of what was happening. The family also shot quite a bit themselves, which is the much grainier footage, and that was obviously incorporated into the story.
Morag McKinnon: Some people think we shot the stuff near the end, where he’s choking and dictating his final blog, but that was very much Neil’s decision. We felt that there was a time when it wasn’t appropriate for us to be there, because the family deserved that personal private space. But it was very much Neil’s decision to film those last moments.
Emma Davie: Neil’s input was so incredibly vital. He and his family provided such incredible openness; they were very strong collaborators in the filmmaking process. Towards the end, it was Neil’s brother who did the voiceover, when Neil could no longer speak.
Morag McKinnon: His brother actually offered to read out the remaining blogs that needed to be read out.
Do you think the filming actually helped the family?
Emma Davie: Yes, I think it did; Louise herself would say that she feels some people have presumptions about having a camera in the house, that she’s always asked about how she dealt with the imposition. And she just says that it meant there were more people to play with their son Oscar. Actually, she welcomed having a witness.
The thing with documentaries is that people think it’s about taking, but sometimes it’s about giving and sharing. We went to film the day Neil died. We went in almost immediately afterwards, and Louise more or less pulled us into this room and really talked about what the experience had been like. Now, that was never going to go into the film, but I think it was important to her.
Morag McKinnon: By the time Neil died, I think a proper relationship had been built up. It felt for all of us that we were all trying to be part of the same thing, to help Neil communicate what he was going through. It almost feels like the film is an extension of him.
I Am Breathing received its UK premiere on 20 June 2013 at the Edinburgh International Film Festival, as part of a series of screenings around the world to coincide with Motor Neurone Disease Awareness Month.
For more information on the film, visit www.iambreathingfilm.com.