February 2020
We are so happy to announce that the Unfixed documentary film and community project are well under way!
On February 1st, all 24 of our Unfixed Community members were sent a question about their experience living with chronic illness. The two weeks following felt like magic as we watched our Dropbox folder fill up with their self-recorded, smartphone videos. We have been moved to tears too many times to count watching these humans openly share the spectrum of challenges and revelations that are inherent when living unfixed. Please visit our Unfixed Youtube Channel, subscribe and watch our first video. It was produced and edited by our multi-talented resident wizard and cofounder of Alight Films, Mia Allen.
In addition to this first video, we will soon begin to compile these stories into advocacy and educational videos, highlighting certain conditions and profiling the humans living with them. We hope that through this sharing, we are making the world a more receptive, educated and compassionate place for humans living with chronic illness. Our invaluable Unfixed team member and Ph.D intern Andie Thompson is doing quantitative analysis on the content of the video submissions, extracting themes and compiling her research into useful data for medical and public health professionals.
Meet our first two heroes
At the end of 2019 we began filming one of our remarkable heroes Dylan. He was diagnosed with ALS while in his final year of completing doctoral degrees in Naturopathic and Chinese Medicine. Using a computer system that tracks his eye movements, Dylan types his profound and poetic thoughts for us and the world. He describes his experience with ALS as "...a journey of deep surrender. It really is a deepening of faith. I am growing in ways that allow me to reach beyond my fears and feel a connection that transcends this body and this lifetime."
Spending a few days with Dylan has left an indelible impression on all of our hearts and we look forward to filming more environmental shots with him this summer at his childhood home in Puget Sound. Dylan is currently in the process of applying for 501(c)3 status to create a charitable organization called Life Breath that will purchase land from timber companies to establish greenhouse gas absorbing nature preserves for generations to come. With the daily micro-suffocations that occur with ALS, no one appreciates clear breathing more than Dylan and he hopes his organization will help rebalance life by strengthening the global breath.
Director of Photography Asia Brown and Sound Recordist Callie Day making magic with Dylan.
Last week we had a full schedule of filming our second hero Rene. Two years ago Rene was diagnosed with Trigeminal Neuralgia, once referred to as the "suicide disease" due to the excruciating, electric shock pain that radiates from the cranial nerve. During episodes, patients have difficulty speaking, eating, laughing and being touched. Rene is a coast guard veteran and self-proclaimed extrovert who thought his 50th birthday would usher in a new chapter of adventure and creativity but when the electrocution-like pain sent him into isolation, he lost sight of his identity and his dreams. Two years later, Rene is finding ways to reconnect with his family and community amidst the pain and realizing that he's not alone. And through the support of friends, family and joining the Unfixed Community he knows now that this disorder "is not going to stop letting me, be me." For our last hour of filming, Rene courageously got up on stage at Olympia's premiere story slam event called StoryOly and shared his journey with chronic pain in front of a captive and compassionate audience. A truly remarkable experience for us all.
Once we get a few more shoots under our belt, George Mitchell, senior editor at Mission Control, Portland's world-class post-production facility, will begin building our trailer and fundraiser video. With those in hand, we can then submit our project to ITVS, Sundance Documentary Fund and other important players in the industry.
Rene doesn't sugar coat it. Trigeminal Neuralgia is brutal. But after two years of isolation, Rene is beginning to practice what he calls "radical acceptance" and finding ways to be back in the world - connecting, creating and sharing despite the pain.
The Unfixed film crew wraps day two with Rene and a few of his adoring kids.
With gratitude
And lastly! Thank you to our partners and collaborators for believing in us, bringing healing and advocacy into your own circles and helping us grow our audience to create a more informed and empathic world. We can't control what curve balls come our way in life but we can decide what to do about them. I am endlessly inspired by the people and organizations choosing to bring positivity, awareness and love into some of the most challenging of places. Please take time to learn more about all of their extensive efforts within the chronic illness communities - Invisible Disabilities Association, Our Odyssey, Inspire, Health Story Collaborative, and MdDS Foundation.
And thank YOU for your encouragement and support on this Unfixed journey. There is a stellar team of filmmakers behind the scenes so please visit the Unfixed website and learn about the talented hands and hearts helping me make this vision a reality. I would be lost at sea (quite literally, thanks to the undulating tides of Mal de Débarquement Syndrome) without them.
Inspired? How can you help? Please forward this newsletter, subscribe to our Youtube channel, follow our social media accounts and spread the word with anyone in your community who might resonate with our vision. You can also help the film get made through a tax deductible donation through our fiscal sponsor or by becoming an investor. If you have more questions about funding, please message us using the email icon at the bottom of the newsletter. Ultimately, every one of us is unfixed in some way. My hope is that this journey together will be a tool, a resource and a teacher so we can all bring more compassion to the human experience and live more fully and radically Unfixed.
Sincerely,
Kimberly Warner
director/producer