In the hustle and bustle of ALS awareness last month, I nearly missed finding out about the debut of a special film that I was heavily involved in during its early stages.
I leaned forward when my friend began her email with, “Did you have ringing in your ears last night?” She told me she had attended the ALS Therapeutics Foundation’s 3rd Annual ALS Film Festival and said, “There was a lot of cheering last night.”
It turned out that John Rothman, the writer and director of the film A New Life, had been invited to a film festival to discuss his film’s connection to ALS. According to my friend, during the discussion, he had found my ALS News Today column while researching in 2022 and had asked for my feedback on a part of his script that dealt with ALS. He then asked me to help him recruit people with ALS for supporting roles in his film. I wrote about my interesting experience in my column “Improving ALS Representation in Film: My Behind-the-Scenes Role.”
Fast forward to 2024, and Rothman’s film has finally finished production and is available to watch on Amazon Prime Video.
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What is the movie about?
I won’t give away the plot, but I’ll give you a quick synopsis: The story has a classic thriller/horror setup. It begins with a woman named Jessie, who is on the run, desperate to cross the Canadian border to escape her past. Pursuing her is Elsa, a resourceful agent who has been put one step behind by her ALS diagnosis. She hides her illness from her colleagues, hoping that by bringing in Jessie, she might prove she can still do the job. As the women’s lives intertwine, Elsa keeps moving forward despite the progression of her ALS symptoms.
I remember Director Rothman telling me that he was very careful to portray ALS accurately and respectfully in the film, and seeing the final product, I felt he was right.
Why is this important?
I’ve always been interested in how disabilities are represented in the media, and in particular how my disability is represented in the media. I’ve seen so much change, from when ALS wasn’t even mentioned at all, to when it was a major part of the story, to when able-bodied actors were playing people with ALS, to now when actual people with ALS are in supporting roles and ALS is part of the storyline. Amazing!
There’s also value in having Prime as a platform where viewers can discover the film, as exposure to a wider audience means increased awareness of ALS and the challenges patients experience as they continue with everyday activities while managing their symptoms.
ALS awareness in the media is moving in the right direction, so please add “New Life” to your watchlist and give it a thumbs up if you enjoyed it.
And give yourself a pat on the back. Those of us living with ALS are the stars of the movie of our own lives, with our families, friends, and caregivers in the supporting cast. Make it an inspiring, happy ending, because we believe we can live well, even with ALS.
Note: ALS News Today is a website that provides news and information about the disease only. It does not provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis or treatment. Always consult with your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you have read on this website. Opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to stimulate discussion about issues relating to ALS.