Why Dylan's story matters
When I began filming Dylan in 2019 for the Unfixed documentary, he was already communicating through an eye-tracking device—eyes slowly scanning across a keyboard screen and selecting letters to type out his thoughts. But the progression of ALS is making the muscles of his eyes weak and dreams of sharing his expansive mind with the world are fading.
Dylan has consciously chosen not to prolong life once he's "locked out,” ie. he can’t communicate. In the past few months, his eye muscles have faded. He predicts he has about six months left (or per his request, after Dune: Part 2 is released.)
I have collected tens of thousands of Dylan's words in the form of exquisitely written essays over the past four years, but not all will be used in the final film. I am not the only one who believes Dylan's wisdom needs to be heard. His perspectives on love, beauty, and freedom that co-exist with suffering are a healing balm for humanity.
Expanding his spirit into gratitude for the profound mystery of life—even after everything has been whittled away—is Dylan’s greatest offering. But seeing this perspective manifest in the form of his memoir, Liberation of Being, is a dream we are now weeks away from a completing. Don’t worry, I will make announcements here when it’s ready for your eyes and heart.
Until then, please take a moment to watch this short, 1 minute clip as Dylan reflects on why his story matters to this world.
Would you like to read the Unfixed memoir chronologically? Or have you missed previous chapters? You can access them all for free with the link below:
Your work is so powerful and thank you for the video of Dylan. When he "speaks" these words, "I am not on the adventure I dreamed about years ago, but it is the one I am in. I have come to accept it." I am reminded that most of us could speak those words. It's the acceptance that's the challenge and your work is helping me take steps toward that.
Ooof. This is so moving and a bit of a gut punch. What a gift that you've been able to capture his words. I am struck by his beautiful eyes. The fact that he is using them to communicate those words seems so right. What powerful stories you are telling and sharing with us. Your work is really important. Thank-you.