Within a year, Neil Platt goes from being a healthy 30-something British bloke with a great sense of humour to becoming completely paralysed from the neck down, thanks to the devastating illness he has inherited – known as ALS, MND, or Lou Gehrig’s Disease. As his body gets weaker, his perspective on life changes.
Knowing he only has a few months left to live, and while he still has the ability to speak, Neil puts together a letter and memory box for his baby son Oscar and communicates his experience and thoughts about life in a blog – and in this film which he was determined to make. The directness of his communication mingles with images of the sensory details of a life well lived, and makes us revalue the ordinary.
His blog posts form the film’s narration as he tells his own story through memories and impressions of his life – the sheer joy of falling in love, of partying with his mates, of fast motorbike rides. Through his determination to share his final journey, he makes us ask questions about our own lives.
Emma, How did you get involved in this project?
ED: Morag McKinnon, who co-directed the film, was an old friend of Louise and Neil’s from art college in Edinburgh. And as Neil was dying of the ALS—this was six months before he died—he became increasingly prolific in the blog that he wrote, which was called “Platitude.” At one point he wrote that if anybody knew anybody in the media who might tell his story, he wanted to reach out and tell people what it was like to have this disease. Morag asked me if I wanted to get involved and make a film. I was reluctant, for ethical reasons more than anything—whether it was right to film somebody at that stage. But we began filming Neil fairly soon afterwards. And he was just such an incredible communicator that the film became what it is today. It’s reaching so many people.
Louise, how did you and Neil feel about having this documentary presence in your lives, especially at a time like this?
LO: I get asked a lot, “Was it intrusive in your lives?” But we’d lost our privacy a long time before Emma and Morag brought the camera. And by the time we started filming, it really wasn’t intrusive any more than all of the specialists we were having through the door, people we had to have there to help. And actually it was nice to have people there. And also, Neil needed to get something out of him. It did him so much good to be answering Emma’s questions. It did him so much good to have the door closed—it was just Emma and Neil in a room for some of these questions. Neil had not experienced a closed door for a long time without myself, or somebody that was trained in how to stop him from choking if anything like that happened. It was really good for Neil, because he just kept talking and talking and talking, and things kept coming out, and it gave him a sense of satisfaction. It was an incredible struggle for Neil even to speak by that point. He would say that a conversation like we’re having now is more like a hundred meter sprint for him.
Narrative films about dying tend to be relentlessly grim. Here, there was levity, there was happiness – at times it seemed like a perfectly normal relationship.
LO: It would have been incredibly hard to go through that experience without ever having a laugh, or joking about things, talking about popular culture, all of that kind of stuff. You don’t just focus on yourselves all the time. If there are other things around you, they don’t stop happening just because you’re dying.
How do you think Neil’s experience, and the film, might affect people’s attitudes toward death and dying?
LO: I don’t think we talk about death enough. I don’t want to use the word “taboo,” but it isn’t something that we all live with. We should live with it a bit more. We should talk about it and have it more in conversation. And then the fear of it would be diminished slightly.
Emma, what was the shooting schedule like? Sometimes, watching, it seemed like you were there all the time.
ED: People often say that. But we were actually there relatively little—probably five or six visits, a couple of days at a time. We couldn’t be there much longer for a couple of reasons. We didn’t want to intrude too much. And I had a full time job, and it was quite hard to get away. So fortunately Neil’s blog allowed us to have a sense of real intimacy with the family’s day-to-day life.
LO: You left us with a camera as well.
ED: And Louise became a wonderful cameraperson herself towards the end. That incredible sequence where the snowman is in the garden outside, and then she turns the camera around and you see Neil watching through the glass door – that was so strong, just him staring at his child playing and the fact that he can’t participate in it any way other than looking. So I think Louise and Neil were incredibly generous with access, but also with access to their own video archives. And fortunately they were well filmed as a couple.
LO: Actually, that wasn’t even stuff that we’d filmed ourselves. Most of it was from Neil’s cousin who had taken us on holiday. And had she not had babies at the time, there probably wouldn’t have been a camera recording our holiday. That was just luck. And it was luck that we had some footage of Neil healthy.
ED: Because it was so important to see him healthy. I think what was so shocking was how quickly this illness ravaged his body—within a period of eight months. He went from being a hunky, gorgeous guy–
LO: (Laughs.) Oh, he’d love to hear that.
ED: I mean he was, if you look at the photos.
LO: There was an air of confidence about him. He was a healthy, fit person.
ED: And he went from that to becoming unable to move from the neck down. He couldn’t even breathe on his own.
Can you talk about communication as a theme in this film? You really get at the idea that our ability to communicate is what makes us who we are.
ED: I think that’s really right. We wanted the whole film to be based around this incredible effort of communication that he made. And it was that effort that was heroic. And it was that effort that actually transcended his death in a way. That was what we wanted the film to be about. It wasn’t ever pretending to be a film that could really be about his whole life. We asked Neil what he missed most. It was such a hard question, and one which I felt so bad asking, but it seemed important to ask. And one thing that he said really clearly was that the freedom to communicate was the biggest freedom, and the thought of losing that was… He’d lost every other ability. He couldn’t move his hands, he couldn’t walk, he couldn’t do any of the things that the rest of us could do. But what he could do was talk.
LO: That communication was his line in the sand. Neil had to draw his own line in the sand, because he was on ventilation. And he had to write documents to basically say, when I can no longer talk, speak or swallow… Losing communication was the point where he deemed life would not be tolerable.
So he decided that he would be taken off of ventilation once he could no longer speak. Was that a decision that you were supportive of?
LO: I mean it’s not a decision that I could ever have an opinion on unless I was in that situation. I think it has to come from the person. Even though I was that close to him, still, I can’t even imagine.
You left a lot of footage for your son, Oscar. Is this a documentary that you would want him to see?
LO: Maybe when he’s older. He’ll let me know when the time’s right, I think. I mean he knows that there is a film about his daddy. He only just turned six. It’s there for him when he wants it. But, you know, his daddy’s still quite a presence in his life. He’ll point out a picture and say “That’s daddy.” He only remembers him in photographs now. So I think it’ll be very interesting for him to see Neil’s mannerisms, the similarity to himself. I think Oscar’s going to grow up looking very like his daddy. And I’m sure that will be really interesting for him to see, but obviously he can’t see that until he’s ready.
How do you think Neil wanted Oscar to remember him, and think of him, as he grows up?
LO: Louise: It’s odd, because I have actually read a letter he left to Oscar, and I’ve not shared that publicly. But what I have said is that he chose to tell stories about his life, not things that he wishes Oscar to achieve or anything like that. It’s just stories about himself, to help Oscar to get to know him. And I think that’s what he felt was most important to leave to Oscar. It’s the little things, the little stories, the things that Neil really appreciated and experienced in his life. Even just little stories about things that he got up to with his friends when he was younger, and significant memories throughout his life. And I think Oscar’s incredibly lucky to have that. And he’s lucky, when he sees the documentary, that he can see how bravely his daddy dealt with the worst situation: with a sense of humor, with his heart on his sleeve. I would hope that it would actually take away any fears that Oscar might have about that. I mean most of us live with a fear of death. But most of us aren’t really lucky enough to have that, to see it. And I know it sounds odd me saying “lucky enough” to see it happening, but I think most people do look away from these things, and it creates more fear about it. Neil lost the ability to look away from death like we all do in day-to-day life. He couldn’t not think about it anymore. He had to face it.
Emma, when you filmed Oscar and Neil together, what sorts of things were you trying to capture?
ED: I felt like what was incredible in the house was this sort of contrast of Neil’s fading physical abilities and Oscar’s burgeoning life. And I felt like the camera was moving naturally from these two poles, of Neil’s decrepit body, where is hands couldn’t even move without being lifted—so that if Louise wanted Neil to give Oscar a cuddle she had to lift his hands to go around Oscar’s body. And meanwhile there was little Oscar running around the place. He started walking and talking in that little period that we were filming. Tt was that charged polarization of experience of life that really gave a certain weight and a certain sort of incredible wonder to that experience.
How painful was the project for you, personally?
ED: It wasn’t painful just at the time – it continued to be painful in the edit for quite a few years. You think you’re going to become immune to it, but you’re never immune to it. But I think that is the way it should be. The lessons I took from Neil and from Louise will stay with me for a long time, and I hope that they’re not just characterized by pain. They’re really not. In fact it’s the opposite. But in order for the opposite to be there you have to acknowledge the pain. So it’s an incredible, rich gamut of feelings and emotions and lessons and questions. And I think I will continue to think about Neil for many, many years, and about what he did and who he was at that stage.
You say the editing process took years. What kinds of things did you try to zero in on, what did you try to capture, and what kinds of things did you tend to edit out?
ED: What we wanted to know was how the film could not just be about death, but actually about life. If we’d only used the footage of what was happening in the house at the time it would have been fairly relentless. So that was why it was so important to try and get Neil and Louise’s video archive. We also tried to imagine Neil’s inner world. That was part of our task in the edit: How could we actually give some kind of space to what he thought about life? And obviously you can never do justice to that. But there was a flavor of that in his blog, in his wit, his use of words, in his use of language, and the kinds of things he would notice—his ways of talking about his experience of even just being stuck in his bed, and the energy with which he saw what was around him even as all his freedoms had gone. So I guess part of our task was, how could we do justice to that perspective of the world? And Morag and I shared a hatred of sentimentality, and anything that smacked of a cloying sort of sweetness, or something that was trying to be too nostalgic, or anything like that. So it felt like we had to keep removing that from the edit. Maybe it’s just because we’re Scottish, but we wanted a certain austerity in the film. Because it felt like that was more respectful to what Neil and Louise were going through. But at the same time, we also struck the balance between that and the valuing of life. So with some of the sequences, like the creation of what we called “the love story”—which was Neil talking about when he met Louise—we tried to think of a way to make things come alive. With the love story, we realized that we wanted just his words to drive it, not our images. But by creating something very simple, an image of a hand drawing the house that Louise and Neil lived in while Neil spoke—by actually taking away imagery, and allowing his words to do more work—it allowed an audience imaginative space. A lot of the edit was about creating a space for the audience to imagine him, so that the film became theirs.
Did you think that being overly sentimental would have made the documentary overly cinematic and phony?
ED: I think so. I think all my questions about making the film in the first place continued throughout the whole process: It’s not right to make entertainment from somebody’s suffering. So how can the film not be a simple tug of your heart? How can it be something that we’re actually sharing with people? And I think that what the film is about more is this sense that we’re all going to this place. In a way, throughout the film, we’re trying to look at the texture of experience of that time of your life: This is what it is to face death.
What are some things that both of you would like people to take away from the film?
LO: I would hope that after seeing the film, friends and family or even people slightly connected to someone that they know with ALS, may be able to say, I’ll know how to help you now, I’ll know how to talk to you. Because they’re the same people. They just happen to be diagnosed with something terminal. Their personality is the same. And I think it might give people more confidence to interact with that person in the same way that they always have.
ED: What I hope people get from it, and I suppose that some do, is an appreciation of being able to move your hands, or being able to stroke your child’s hair, being able to pick up a phone and call your friend, being able to go out to a pub and have a beer. Ordinary things. That was something that being in the presence of Neil made me so much more aware of. Sometimes I’m picking up a coffee cup, and it just flashes to me – what must it be like not to be able to do that? He used to ask us to do things like sit on our hands for ten minutes, and see what it’s like when you get itchy. And we could barely even do that.
LO: Sometimes people say they’ve had a near-death experience and they’ve gained a new appreciation for life. Hopefully the film might give people that appreciation for life without having to go through a near-death experience. I certainly appreciate it so much more.
ED: And also it’s very important that the film does what Neil wanted it to do: raise awareness of the illness. That has been the other ambition for us: that awareness just becomes more common in the public consciousness.
Are there any other things that you were doing in the aftermath of shooting to promote consciousness of ALS?
ED: The film has been a catalyst for all kinds of other things. On the twentieth of June we participated in “Global MND [motor neuron disease, another term for ALS] Awareness Day.” And we managed to get the film screened in about forty-five different countries, about two hundred and fifty screenings around that day. And some of them were very small communities who hadn’t even heard of the illness before. There were amazing stories. In Kenya, a woman saw a screening and she realized a person in her village wasn’t bewitched, which is what everybody said; it was ALS. This week it’s showing in Latvia, where it’s been used to support a big debate about care for people that are seriously ill. And in other communities it’s been used for people to look at palliative cares. And I just hope its uses are endless—as a provocation for debate, or people just using it in any way they can, because I think that’s what Neil wanted.
Louise, after Neil had his diagnosis, was there anything about the experience that surprised you, that was counter to what you would have expected?
LO: I didn’t really know what to expect when he was first diagnosed. You kind of assume that you should be in tears twenty-four hours a day, but you don’t want to just stop everything. You want to keep living. I think I didn’t that there would be arguments with Neil. Neil and I never used to argue. But you’re not actually arguing with each other, it’s a frustration at the situation and the disease. He couldn’t physically pick up a book and throw it against the wall. Where was he going to put that? It’s actually quite a compliment that he was arguing with me, because obviously I’m the person he felt safest doing that with. I mean obviously it’s upsetting that you argue, but there’s a reason for it, and it always cleared the air, there was a freshness after it. Neil got to a point where he was in tears. And I think he had to get himself there. I think people should talk about that more. Because I think carers are always feeling guilty every single step of the way, because you’re the one that’s going to survive, you’re the one that’s going to see your child grow up. And there isn’t a direction you can turn where there isn’t some kind of guilt attached. And you don’t want to be fighting with a dying man. You want it to be lovely, with the two of you spending every last minute together, but actually it needs to happen.
Emma, what about you—after you entered the project what surprised you, what ran counter to your expectations?
ED: I don’t know what expectations I actually had. But I think what surprised me in the house was how much laughter there was. And I think that’s what surprises people in the film. As a filmmaker what surprised me was that the journey was probably a thousand times harder than I could have imagined. To try and make it work as a film. It just pulled so much from all of us involved.
LO: I think after seeing Neil in such a difficult situation, anytime you feel that something’s hard or frustrating, you can go, But Neil did this, Neil went through that. So we can’t give up. It almost trivializes other hard things.
ED: You’re absolutely right. That, in a way, was exactly what kept us going.
Read the review at IndieNYC.com
David@IndieNYC.com
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