After taking an unconventional approach to his treatment for multiple sclerosis, it was only fitting that when Matt Embry made a movie documenting his dealings with the disease, it wasn’t going to go the traditional route. “Living Proof,” a film that follows Embry as he speaks to experts and fellow people living with MS about the disease, isn’t content to have one walk alongside him, but places you almost directly in his shoes as he employs a narrative structure that gives a similar sense of discovery as he experiences about potential forms of therapy, both experimental and already accepted by the medical community, and the cottage industry of MS charities and pharmaceutical companies that may be inhibiting progress on a cure because it would threaten the considerable cash flow that currently exists.
Embry has spent years already in his native Canada, working in tandem with his father Ashton, to raise awareness about the disease through the website MS Hope, but in making “Living Proof,” he hopes to expand his reach even further and shortly after the film’s premiere at the Toronto Film Festival, he spoke about turning the camera on himself after building a career as an esteemed cinematic biographer of others, as well as how he creates a safe environment for his subjects to talk about the sensitive matters of their health and making a film that would get people to understand the complexities of the disease and the economy around it.
Why was this the right time for you to make this film?
I’ve been asked that question before [since] I have had the disease for a long period of time. Even though I have spoken [about it] publicly, all the way back to 1997 when I spoke at my first conference, it’s hard to be taken seriously at five to ten years after diagnosis. I knew that once I hit that 20-year mark, people would really start to pay attention. That also was in tandem with me just maturing as an individual. I was approaching 40, I had a new perspective on life and also wanted to have an outreach to other patients and families.
In order to make a film about MS, did you always think you’d put yourself at the center of it onscreen?
That happened organically. I’ve done a lot of documentaries in the past, films on Jann Arden, Theo Fleury and Ian Tyson, and I have a good understanding of documentaries that are embedded with a key character. I knew that I had an active journey, going to go speak to people and that I was going to create a website. I also knew that other characters, whether that be patients or [others] reaching out to me, I knew that I could go to them and
we knew that if I was going to speak to audiences [at MS events], we knew a certain percentage of the characters were going to come out.
At the same time, we also didn’t want to risk not getting great characters. There were key characters, especially when it came to finding doctors and medical professionals, who were high up the chain in the multiple sclerosis [community] that we knew we needed to speak to, so there were a certain number of interviews that were scheduled far in advance. Then there were surprises. There were patients who we met on the journey that took us down totally different roads and got us other doctors and other medical institutions.
Given your own personal experience with the condition, is there anything that surprises you as you talk to people about MS?
There were definitely surprises. Say when we looked at stem cell treatment, I had no idea how much of the research was patient-funded. There weren’t necessarily research funds dedicated to alternative [treatments] or other ways to look at multiple sclerosis. There were also some surprises when it came to how much money was being spent on MS drugs and how taxpayers in Canada were paying literally hundreds of millions of dollars for drugs and we really started to question the long-term effect of these drugs. There were also good surprises – seeing patients in bad shape who were doing different types of therapies and getting better. We found hope in places we didn’t think we would find it.
Since this is sensitive subject matter, is there anything you do specifically to create a safe space for people to be candid?
If I’m able to talk to young filmmakers today, especially documentary filmmakers, what I would like to communicate is that just because you have a big crew doesn’t mean you’re going to have a great movie. In a documentary film, directors and producers should be very cognizant of the intimacy of the characters. A lot of times when you have too many bodies in the room – too big of a crew – you are not going to get those visceral emotional scenes that pop. I can’t tell you how many times in my career where the best scenes in the film have literally been a cameraman and me doing my own sound.
There was a scene in particular when I was working on an Ian Tyson film, “Songs From the Gravel Road,” and it was an early morning and I had to scramble a crew together. Truthfully, it was a last-minute thing, Ian suddenly wanted to do a scene, so we drove out and it was just me doing sound and the cameraman, and I left thinking, “Wow, there was just two of us in here and we just got something incredibly intimate. This is a phenomenal scene, I’ve got to do this more.” Then it became a progression of me starting to understand some of the sound principles. I love working with a sound man, but in certain scenes, you may not need it or have it, so it’s for directors to really open themselves up to that concept that a small crew could just be incredible. When you get these bare bones crews, young filmmakers should learn how to deal with that and capture great things because the variable you really got to think about is that intimacy with the [subject]. There were scenes in this where we were working with big crews when we were doing the conferences, and stuff like that, but some of the greatest work was done with just three people.
I’ve read that sometimes your crew would set cameras up in advance and let them run so you wouldn’t be aware of them, specifically during the sessions you have with your therapist. What was it like capturing yourself authentically and perhaps handing some of those filmmaking decisions off to your crew.
I was so fortunate to work with the director of photography, Patrick McLaughlin, who I’ve worked with almost exclusively from almost a decade now. We have a short hand with each other when it comes to shots and when the camera should be rolling, and I also go way back with Adam Naugler, who did the sound. So I knew that I had two great technical artists I could trust and that personal relationship with them was immeasurable [in terms of] a level of trust with me and my family and the [other] subjects, and also creating [an environment] on set where I didn’t necessarily worry about a lot of the shots. I was just trying to be real and truthful to the moment as much as possible.
There were moments where, especially in the therapy scene, I wanted to capture that intimacy, that connection between two people, and sometimes having those technical aspects of film production around can really be a barrier to that. So we removed the people and put the cameras in. In truth, we had trouble color correcting that scene because the sun was setting and no one could ride the iris, but I think it worked out.
How did you figure out the unusual structure of this?
Multiple sclerosis is definitely the flashpoint for this movie. I wanted to create a film that could be applicable to all illnesses and all autoimmune diseases and I wanted people to understand when someone is diagnosed with an autoimmune disease what that feels like, the process they go through personally with their family, so that became the structure. What does it feel like for an audience to experience that journey with a patient, whether it be MS, or any other type of disease? Parkinson’s, Alzheimer’s, this kind of thing. We started with a character, diagnosed with an illness, then we followed that journey.
Is it difficult to translate scientific terms into human terms?
It is. Balancing science and storytelling is tough. You want to be able to have that scientific credibility to the story you’re telling, but at the same time you don’t want to get lost in research and numbers that the average person can’t relate to. That was a very tight balancing act and a number of times in the edits, I would say we’re not making “The Nature of Things.” We want that same type of credibility when it comes to the papers we show and the science behind it, but we also had to focus this as a human story. Diseases happen to human beings. It’s their journey which we want to capture.
You’re a filmmaker, but is it interesting to also in effect become an advocate for your subject?
I didn’t wake up one day and decided I wanted to be an activist. It’s not something you look at yourself in the mirror and say, “I want to be an activist about this.” I was diagnosed with multiple sclerosis, that wasn’t my choice either. Luckily, my father found a different way to deal with the disease and in life when you see things that maybe you don’t think are right, you see people possibly being harmed, and you want to do something. If you have a message of hope and just try to get people information that they may not be getting, you want to take action. So how do I get my information to the most people possible? I can’t decide what they’re going to do, but I can at least give them the information, share the strategies that I’ve done and film is a very powerful tool to be able to reach people. Hats off to TIFF and to get this type of attention for the film and for MS patients across Canada and around the world to have this type of stage to have a voice is really important for us. This is an example of film that can create change and I believe that this film is going to change lives. That’s why we do films.
“Living Proof” does not yet have U.S. distribution. It will play at the Toronto Film Festival on September 14th at the Bell Lightbox 3 at 11:15 a.m. and September 16th at the Scotiabank 14 at 9:30 a.m.