When I Walk – A Battle With Multiple Sclerosis

“I may be walking slower; but inside I’m racing.” The words of Jason DaSilva in his new film, When I Walk.

In 2006, at the age of 25, Jason collapsed on a beach on holiday and couldn’t get up. He was diagnosed with Multiple Sclerosis and documented his life for the next 6 years on camera. The result: a raw, vulnerable and powerful autobiographical film.

As filmgoers, we connect with and reflect on what we know. Having a mother who lives every day with this terrible disease, I obviously have a stronger bond with this film than most. But When I Walk speaks volumes to any audience member. It is beautiful in its sincerity and is a story in which anyone can lose themselves.

In the wake of its recent UK premiere, I caught up with Jason over Skype from his place in New York. After its super-positive reception at Sundance in 2013, this UK showing was way past due. Lovely Edinburgh was its host city, and the event, coinciding with MS Awareness Week, took place at the Filmhouse and was organised by a small charity called the MS Therapy Centre Lothian, based in Edinburgh. It is part of a network of centres across the UK, which support people living with MS and provide a range of therapies to help them self-manage their condition.

As a director, writer, producer, editor – well, an all-round filmmaker in the truest sense of the word – making this film was a natural thing for Jason to do. A genuine response to what was happening to him:

“At the time of making it, it was just a kind of self-therapy tool more than anything else. It wasn’t really until the film was finished that I saw the potential for it to really help other people. That’s why the film’s so honest. It was just Alice [his wife] and me using it as self-therapy and using the camera as a tool to speak about what we were going through.”

Jason has Primary Progressive MS, named so because the symptoms get worse right from the onset. His hands are curling up, he’s in a wheelchair and his vision is worsening at an alarming rate. At the beginning of the film, after just 6 months of his fall on the beach, his walking ability has noticeably decreased – “I just started using a cane and already they’re talking about wheelchairs,” he comments.

Yet throughout the film his humor and good spirit are as evident as they are during the interview. He has a relaxed coolness about him and a matter-of-factness about his condition.

“The good thing [about making the film] is you can edit out the problems so I can look at least semi-graceful”.

In fact, seeing himself on camWhen I Walk 5era was a kind of self-therapy. During some early scenes in the movie, where he is adapting to walking aided by a wheeled-walker, he offers an insight into this both external and internal struggle – that mentally, inside, he feels he can walk. Such scenes seemed to prompt some of the premiere’s audience members, many of whom have MS, to reflect on their disease in similar ways. My mum mentioned that during these scenes she thought, “Is that how I look like when walk?”

Many of us, if presented with similar troubles might see them as setbacks. But not Jason.

“It’s like a challenge. To this day it’s a big challenge as I get worse and have to get different devices and learn how to use them. And rely on other people to do things that I would have normally done myself. But, that’s all part of the joys of MS, I guess (laughs). You just kinda gottta roll with the punches.”

He certainly threw himself into the filmmaking process, with an impressive array of filmmaking techniques expertly blended together. From traditional documentary to animation to selfie shots to almost guerilla-filmmaking type shots, all combined with inventive use of sound design and music. He also did the artwork!

It’s a real creative documentary, but at the same time maintains a certain loveable DIY approach, which helps absorb the viewer into his world. He notes his influences as:

“Other filmmakers that I respected in the documentary field. People like Errol Morris… but then other participatory documentary-makers like Morgan Spurlock and Michael Moore as well. They’re all doing something different than I’m doing, but those are the influences I had to draw upon.”

However this type of filmmaking presented a new challenge for him – making himself the subject.

“Yeah, of course [I felt exposed]. I wouldn’t have done anything like this if I didn’t have to. Just putting myself out there and being exposed is not something that – you know, every other film I did… they were all documentaries but they were about other subjects. So I’d never thought of actually putting myself as the subject for a film.”

However Jason is not the sole subject of this documentary. His wife, Alice, whom he meets during it, becomes an integral part of Jason’s life and the film, offering a new lease of life to both. She appears not only as a subject but also as a camera operator and co-editor, becoming Jason’s hands in the editing suite when he can no longer use a mouse and keyboard.

When I Walk4“[The collaboration was] really good. I was surprised that she was so capable of just entering it and learning about the process of filmmaking, but I wasn’t actually expecting her to be as vulnerable as she was in the film when I was working on it. But it all worked out fine.”

This vulnerability is perhaps most apparent when Alice suffers a miscarriage. To be facing so many challenges and then to suffer this tragedy seems almost unreal to imagine. When looking back at those scenes now, Jason responds with characteristic cool matter-of-factness; unphased and calm through even the greatest adversities the world has to throw at him:

“I think it’s fine now because we have a baby but it was tougher for her and me to watch it at the time.”

We eventually get a happy ending – they now have a son.

“He’s 15 months now. His name’s Jase. He’s really great actually…. We were thinking about naming him [after my grandfather], but my family doesn’t like [his] name (laughs)! So they said, “Don’t name him that”. It was funny.”

When I Walk can be a tough emotional ride, but there are also so many upbeat and heartwarming moments. The emblematic JUST MARRIED sign pinned to the back of Jason’s scooter as they ride the streets of New York as a newly married couple is one such moment.

Yet it recalls another challenge Jason faces – getting around, especially in NYC. In his words, there are no accessible cabs, the subways are difficult with a lack of elevators, pedestrians are rude and cars knock you down. Educating the general public about wheelchair and walker users is of paramount importance and is obviously a true passion of Jason’s.

“I’m trying to find new ways to do that. But I think it’s through films like [When I Walk] and initiatives like [AXS Map], that are getting the word out there.”

AXS-map

AXS Map, featured in the film, is an app powered by Google Maps which crowdsources information from users to ascertain the accessibility of shops, restaurants, cinemas…you name it. A wonderful idea that hopes to make it easier for the disabled among us to get around. However, when I ask if the taxi situation has improved at all since the film, he laughs. That’s a NO.

There is the tiniest lapse in his normally calm exterior when I ask him about how he handles feelings of resentment.

“I think it’s like, and I’m sure everyone [who has it] can relate to this – it’s like an ongoing thing. There’s no solution to it. So it’s just like an ongoing battle that I think everybody faces themselves. And those who say that MS is a gift and all that – I don’t think it’s a gift – they’re kinda just saying that to make light of it. But I don’t think that it’s like that, because it’s really difficult sometimes.

…[My coping mechanism is] just: keep working. Like, I work on a few different projects at one time. That keeps me busy and excited about things and that’s what keeps me going I guess. We’re working on this script. Remember that film I was working on in India [in the movie]? I’m kind of revisiting that and turning that into a feature film. So, yeah, it’s good.”

The whole film is life-affirming and makes you want to live life to the full. But perhaps more importantly, it lifts the veil on a terrible disease, previously underrepresented in the media, relative to its incidence. What’s more, a well-received film, with a subject matter that affects a significant number of people in the UK, required a small, local charity in Edinburgh to take the reigns in organising its UK Premiere. This is a film that deserves much more attention than it’s had this side of the pond. And it should be seen the world-over.

WHEN I WALK will air on PBS in the US on 23 June, with plans for digital distribution via Netflix and iTunes in the near future. At present, there are no further plans for UK distribution. However, Tugg events are still rolling, so why not organise an event at your local cinema?