The forthcoming movie “New Life” begins with a classic thriller/horror setup – a woman on the run, chased by mysterious pursuers. The film tells the story of Jessie (Hayley Erin), a young woman fleeing through the Pacific Northwest, hunted by agents of an unknown organization. It also follows Elsa (Sonya Walger), who is leading the effort to find Jessie before she crosses the border into Canada.
There are many twists and turns throughout the movie as we learn more about why Jessie is on the run and why Elsa is chasing her. However, there is one particular twist that makes New Life unique – while coordinating the search for Jessie, Elsa is also dealing with a recent diagnosis of amyotrophic lateral sclerosis (ALS).
Portraying a disease as complicated and devastating as ALS on film is no easy feat. But New Life’s writer and director John Rosman says that he took great care to make sure the film's depiction of ALS was accurate and respectful.
John joined the ALS Therapy Development Institute (ALS TDI) to talk about why he chose to make ALS a part of his movie, and how the involvement from members of the ALS community helped him get it right.
Q) What inspired you to make a character’s ALS diagnosis a central plot point in “New Life”?
A) I started out as a filmmaker working in public media for about ten years, with a focus on short film, documentary, and digital. My first exposure to ALS was through journalism. I was working on a daily talk show, and we were interviewing a woman named Summer Whisman, who was in the advanced stages of ALS. She was pretty much my age, and at that point, she was in a wheelchair and using voice assistance.
I went into that interview thinking it was going to be really heavy – and it was, obviously. But I was also really taken aback by her optimism. I read her memoir [Pillow Flipping Through ALS], and there was so much hope and optimism in the way she looked at the world. It was really inspiring to me, and I think it always stuck with me.
In this movie, there's a person on the run while dealing with some health issues, and you don't know why they’re running. While I was writing this script, I wanted the person who's chasing her to also be like her in a lot of ways. Then I started thinking about ALS, and the unique challenges of that disease.
Q) ALS is a devastating disease. How did you approach creating a fictional story about it? What did you do to make sure the film’s depiction of it was accurate and respectful?
A) Once you inject real life into a fictional story, I think there's an obligation to get it right. I think that’s the most important thing if you’re going to explore a disease like ALS. Not only is there personal responsibility, but it also just makes a story better.
Sonya [Walger], who has ALS in the film, was 100% aligned with that idea, to the point where if we couldn't do it honestly, she didn’t want to do the film. As far as that goes, I took on a lot of research. I talked with doctors, people experiencing ALS, and their families to try to understand it better. I did a lot of reading. I had some of those people read my script. Then we had Sonya work with an actor in the film who has ALS.
For me, it was all about rediscovering that initial surprise I had with Summer where, from the outside, you see their situation and think, “This is terrible. This is awful.” And, of course, in many ways it is. But there can also be so much hope. So, people finding their way through it, finding meaning on their own terms when faced with something so difficult, was really moving to me and incredibly inspiring. Infusing that in the story was important to me.
Q) Can you expand on what type of involvement people with ALS had in the film? What was it like working with them?
A) I worked with a few key people. The first was a woman named Dagmar Munn. She has a column called Living Well with ALS, on ALS News Today. After reading her column I reached out to her and then we had a really engaging correspondence. She was open about her journey with ALS and helped guide me to other sources. She also read parts of the script and gave me notes and feedback.
When it came to casting our film, there was a scene with a Zoom call between our lead, Sonya, and someone else who has ALS. That's the first time the audience realizes what's been going on with her character – before we see her hands shaking, she has a limp, she’s being kind of cagey, and there is something off about her. But that call is when we reveal she has ALS.
For casting that part, it was important for me to find someone who has ALS. So, Dagmar sent out a note through her community. And that's how we found Lisa Cross. Lisa is an actor in the film, but she was also incredibly engaged in helping with the story and working with Sonya as a sounding board. Those two people were incredibly important.
Q) It’s rare to see ALS portrayed in a film that isn’t explicitly about the disease or someone with it, like a documentary or a biopic. What do you hope people who see this movie, who might not be familiar with ALS, take away from it?
A) That's a great question. I think it's important for us to portray a hero in an action/horror movie who’s going through a major life challenge. The challenge for this character is ALS, which is so much more common than I realized before starting this project. I think the big takeaway is that, whether it’s ALS or something else, we're all going to face a big challenge in our lives. How we act and move through the world with that challenge is a personal decision. I think creating a film where a part of the hero’s journey coming to terms with this is very important. I think it would be a real win for the film if it raises awareness about ALS, but also if it speaks to something broader and includes ALS in the conversation.
I think there are two goals. The first one is if someone were to watch this film and learn about ALS for the first time, I want them to be able to convey it to someone like a family member or friend. That’s a win. The even bigger win is if someone has a family member, or someone they really cared about, or even if they’re going through it themselves – if they see a story about ALS that isn't just doom and gloom. It's a story about finding hope within something that's really scary. If someone was able to see this film while going through ALS and take that away, that would mean a lot to me personally.
New Life premieres in select theaters and on video-on-demand on May 3, 2024.
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