Last summer I announced that I was being featured in Becoming Incurable, a film featuring the stories of three people in Sacramento, California, each living with different chronic diseases: Ankylosing Spondylitis, Lyme Disease, Mold Illness, and Dystonia.
Since that day in February when I received Victoria’s (filmmaker/director) email, I have welcomed her into my life with Ankylosing Spondylitis and hidden nothing from view.
I am heartened by Victoria’s passion, curiosity, and talent in videography and visual storytelling. I am humbled by her desire to make this more than a film. She has poured heart and soul into this and I have witnessed her feel deeply and dream big as she has jumped into the deep end with us three professional, chronic survivors.
What I didn’t realize, even when I told all of you that I was in the film, was how big of an impact it would have in the chronic disease community even before the movie itself was ever finished! Becoming Incurable has become much more than a film; it has become a platform empowering people to share their own stories and lives with incurable diseases, largely thanks to the passion and drive of director/filmmaker Victoria.
Becoming Incurable, which is scheduled for release in 2019, has already been telling short stories of people living with chronic diseases in the USA and abroad in “Inside Incurable Lives” video episodes and audio-digital magazine issues (find the latest issues on Facebook or the film’s website).
This project and platform is timely and crucial considering the reality of so many who live incurable diseases and the rise of diagnoses of chronic diseases. People too often feel alone in their pain, fatigue, and other physical and mental symptoms; and Becoming Incurable seeks to highlight these challenges as well as other barriers sick people face including access to healthcare, treatments, research funding, and awareness.
Most importantly for me, Becoming Incurable de-invisible-izes (I made that up) the invisible aspects of living with incurable diseases. I believe this is a necessary movement to de-stigmatize a topic that has, until recently, been mostly off-limits: lifelong disease & pain.
Becoming Incurable highlights what goes on behind the scenes in real people’s lives. That includes the psychological, social, financial, and physical strain that is felt by so many people who have one or several incurable diagnoses. And I am so pleased to be part of it.
From March 15th through April 14th, 2018, Becoming Incurable is crowdfunding to complete production of the film. Even if you cannot contribute, sign up to follow the campaign (which is FREE!) through Seed & Spark, the crowdfunding host site. If the Becoming Incurable campaign reaches 1000 followers the film will be eligible for additional prizes. *update April 2018: we are fully funded!*