Emma Davie’s and Morag Mckinnon’s documentary takes an intimate look at the damaging effects of Motor Neurone Disease on the 34-year old Neil Platt; a courageous, charismatic and witty man, who shows himself at his most vulnerable to raise awareness of MND. The film mixes archive home video footage, Neil’s blog entries, resonant images (space, the passing seasons and travelling on a country road), as well as interviews with Neil and Louise his wife to build a moving portrait of Neil and show the cyclical, passing nature of things. Priscilla Eyles talks to co-director Emma Davie about the process of making such a challenging film.
Q: How did you come to hear about Neil’s story?
A: Neil was a very prolific writer of a blog, and that blog eventually became more important to him. He wrote a blog entry that said: ‘get hold of anybody and get them to tell my story’. And Morag [McKinnon] had been following this blog and was a good friend of mine from college, contacted me and asked me if I wanted to make a documentary about Neil. At this stage I didn’t really feel that this was necessarily the right thing to do for ethical reasons. But I read the blog afterwards and was just so amazed by who he was that I felt we should at least try and do a short film. When Morag and I began filming he’s just such an incredibly strong character and man, he has so much reason to speak and so much passion that we had to make the film.
Q: What made you decide to do this film together and what was your working process like?
A: Initially Morag said she just wanted me to do it because she didn’t have the experience in documentary and I said: ‘I’m not doing it unless you get involved!’ So we spent the next 3 years making it but at the end of the process she had a baby, so the last chunk of editing putting the story together I did with a Danish editor Peter Whinter. I physically filmed but we talked so much about what the camera was doing there, why we were filming it, what it’s about and those discussions were pivotal to the whole process. I also think I couldn’t have filmed it alone because it was so emotional to be with the family. And Morag being close friends with the family it’s hard for her to switch from being there to help to being the person just recording sound, which meant that she couldn’t just go in and help them. I had to pull her back and say, ‘we’re doing more good doing the film at this stage’.
Q: How important is humour in the film as from its basic premise it sounds a very bleak film? 
A: That was who Neil was, I think the really interesting thing is things are never just as one dimensional as you think. It’s not just about sadness there can be a lot of humour. LikeNeil described the strangeness of trying to cut off his mobile phone and [the salesman] not being able to deal with death, and maybe that’s the one of the funny things, society’s refusal to deal with it or to acknowledge it. Obviously he didn’t always keep his sense of humour, but on the whole he would say that fantastically dry humour of his is how he dealt with his suffering.
Q: I imagine the editing process must’ve been difficult what was that like?
A: It’s always hard to edit documentaries but this one we had the added complication that it was very upsetting to go through the footage. It took a while to get brave enough to look at it and initially we tried to just make trailers in order to get funding. We got help from a fantastic mentor, Danish editor Janus Billeskov Jensen, he asked really profound questions to help us think more deeply. And then over a period of years we tried to develop a language, and gradually we developed using his blog and archive footage, trying to interweave all those different filmic forms. The complication of the edit was also we were constantly re-editing his blog. And it was monumentally hard for us to get the correct balance, feeling for him but not making it manipulative in anyway, just ensuring that was one of the big tasks in the edit.
Q: Could you talk about the use of the point of view shots, as I thought they were particularly powerful in empathising with Neil?
A: We knew that the more we could make the film from his point of view the more power it gave him, and we had a sense of him speaking directly to audiences which is what we wanted.
Q: What was your idea behind the more impressionistic sequences?
A: We were trying to articulate his inner world. One thing we were clear about was that the memory of a life became incredibly important as he was approaching death, and we didn’t want it to be a film that was just looking towards death, but also looking at cherishing the life he had which the reason for the more exuberant images. Also being with him gave you such an intense awareness of the ability that we have to move our bodies, to walk, just really simple things and we wanted to find a way of showing that.
Q: Do you think there is a general ignorance about MND?
A: Compared to many other illnesses there’s not a wide public knowledge of actually what it is and hence there’s not a lot of money raised. So that was obviously uppermost in Neil’s mind when making this film, and we’re hoping to raise awareness through the Global Screening Day through something like 165 screenings in 35 countries. It is the illness that most health professionals would least like to die of, it’s such a terrifying illness that you’re wholly conscious and so aware of your body but you’re gradually unable to move anything. And you see with Neil the terror of losing his ability to speak, I think many of us can’t even begin to imagine what that’s like. That’s why the film is so charged , and when I saw it again recently I felt the strength of Neil’s gaze challenging the audience looking at us, knowing that we would still be looking at him after he’s gone and challenging us with ‘what are you going to do?’ Not only what are you going to do about MDN but what are you going to do with your time on earth.
Q: What is it about Neil that’s so engaging do you think, you mentioned his humour?
A: Audiences feel like they know him and a lot of people go and have a drink for Neil. And he had that ability in the blog, he knew he was a great communicator, he was witty, wise man. What’s most interesting is he wasn’t afraid to show his vulnerability. A lot of the time social media is all about hiding your vulnerability and showing off. And Neil in a way did the opposite, he allowed others to open up too and share their suffering through his blog. And Louise his widow is incredible because we re-published every blog post, 100 posts, and she revisited every one from her perspective articulating what she went through at the time. She’s a powerhouse, MND continues to have an incredible spokesperson in her.
Q: You’ve got a lot of feedback from people with MND how has that been for you?
A: We hear through Rebecca Day at Scottish Documentary Institute different people that have called, and we see her sometimes looking totally shell shocked. Somebody phoned the other day who was going to have their chair passage taken away whose husband didn’t only have MND but had throat cancer and cerebral palsy. It’s the intensity of the suffering and individual stories.
Q: Were there any restrictions on what you could and couldn’t film as it seems to be a very access-all-areas film?
A: We had this discussion with Neil about what limitations he would like and once we started filming he didn’t want to put any limitations on it, he just said: ‘You just do what you feel is right’, which is an incredible trust and immense privilege. I think we had our own limitations and we had to go with what we thought was appropriate, and I think that Morag and I both thought that at the very end it wasn’t our business to be there. And what happened towards the very end is the family began filming, and the last scene of him completing the blog his cousin was filming that. The choking scene Louise filmed, and it’s the scene everyone comments on because he’s really struggling for breath but in the midst of it all, the camera fell, and Neil said ‘camera’ and what he wanted was that the camera was looking at him as he was choking. In a way he was using his death like the memory box as this tool of communication.
I Am Breathing is out now
