Eight months after doctors diagnosed him with a disease that attacked his nerve cells, successful British architect Neil Platt became paralyzed from the neck down. As the down-to-earth, often humorous Neil struggled to figure out his legacy for his young son, filmmakers Emma Davie and Morag McKinnon gained intimate access to the Platt family in Neil's last months.
The film, I Am Breathing, will get its North American premiere at this year's True/False Film Festival. Neil described the film as "a tale of fun and laughs with a smattering of upset and devastation."
In a conversation with KBIA, co-director Emma Davie said Neil was adamant in spreading awareness of his disease, amyotrophic lateral sclerosis, or ALS, and also known as motor neurone disease and Lou Gehrig's disease. Neil's ALS was in its rare genetic form – it had killed his father and grandfather. Neil was father to a young boy named Oscar.
Davie described Neil as a born communicator. Before Davie and McKinnon began filming him, Neil had been writing about his experiences in his blog.
"I think [he] really wanted to carry on that communication after he died through this film," Davie said. Neil insisted on being filmed the day before he was dying, and cracked jokes as he recited the last entry of his blog. He died at the age of 34, within a year of his diagnosis.
So Neil was a friend of your co-director, Morag McKinnon. When she approached you with Neil's story as an idea, did you jump at the chance?
Quite honestly, my answer was “I’m really not sure,” because it’s such a difficult subject. There’s so many ethical considerations and so many complex questions that we have to ask ourselves as filmmakers before we embark on filming somebody who’s dying – whether it’s the right thing for us is a question, not just if it’s the right thing for him.
So then what happened was: I went down to meet him. He was just so incredible as a person. Such a born communicator. That in a way from then on the film just had a logic on its own. It felt like it had to be made. So for him it was very much about raising awareness of motor neuron disease at first. But gradually it became more and more about what it is to face death and what bigger questions it makes you ask of life.
He sounds really amazing.
Yes! And I hope also it doesn’t seem too somber. I mean, I know it sounds very intense seeing a film about somebody who’s dying but he was so... The day before he was dying, he insisted it be filmed.
He had such a struggle even to speak in that stage. But still with a little breath and the effort that he had to make to communicate, he was still cracking these jokes. That says something about not only his spirit, but what is to be human, I think. It was incredibly moving and quite breathtaking that maybe we’re not… Maybe death and dying isn’t what we think it is. Maybe that’s the other thing I hope people get [from the film] because I think we think it's one thing, but I think it's something else, too – because he himself I think would have said maybe this has brought out the best in me.
Was avoiding clichés or triteness a big part, a conscious part of your filmmaking?
We had that sense of not wanting to in any way sentimentalize, especially sentimentalize this and especially make it look like we understood suffering, or that we understood his position. By creating some kind of space where we're trying to understand, but we’re not saying we’re absolutely pinning it down if you know what I mean? As I said, we didn't come up with answers, we just came up with more questions. We tried to keep that openness, if you like.
And I think also what was so important throughout the process was making sure that we weren’t saying this is sad, that we were just saying, "What can we learn from this? What is this?" As opposed to this is sad.
I Am Breathing, 89. min, will screen three times at True/False Film Festival: Thursday, Feb 28 / 8:00PM / Big Ragtag, Saturday, Mar 2 / 3:30PM / The Picturehouse and Sunday, Mar 3 / 4:00PM / The Globe. Emma Davie will be present.
To learn more about ALS and recent research findings about the disease, click here.
Watch a trailer for the film, here: