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 can co-exist with suffering are a healing balm for humanity.
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.
Thank you Joyce. I cherish your feedback and am so glad this work is offering some buoyancy in your experience. I agree, acceptance is the hardest part... and I'm not even sure acceptance is the word I use for myself. Sometimes it feels too resigned. I prefer the word "allowing." When I allow my physical challenges to co-exist with the rest of me, I feel empowered, as if some wiser, more loving part of me is saying "Yes, you can join us. Let me hold you."
It's a little like Rumi's "Guest House." Allowing a visitor (even if they stay forever) is different than accepting that they're already in your home. Are you familiar with that poem?
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
One of my favorites and a great connection that deepens the thinking about all of this. Thanks ... and thanks for posting the whole poem. "Begrateful for whatever comes because each has been sent as a guide from beyond." If I were into tattoos, I might choose that one.
Joyce, the quote you pulled is the one that jumped out at me, too.
This may have been a short clip, but it was absolutely packed with meaning, Kimberly. Dylan’s warmth and zest for life beams clear through the screen. ❤️
I'm glad you felt that! I visit him weekly to read sections of his memoir as it progresses and while his body hasn't moved in 3+ years, there is so much vitality under his skin. It's quite surreal to feel and I attribute that to all the inner work he's committed to doing until his very last day.
An especially helpful reminder for those of us who are always looking for happiness and meaning somewhere other than where we are, right now, in this moment.
Yes ... and I keep wondering what stops that zest and courage from showing up in less challenged lives ... what stops me from showing up in my own far less challenged life?
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.
Yes! Those eyes. There is a magnificent intelligence and wisdom that shines through those eyes. His inner circle has said that he always had that, even before the diagnosis, but they've become ever more radiant after.
This post was my introduction to unfixed last fall. What an inspiration!! I had not started following anyone much on substack, because I didn't want to be distracted from doing my own writing. I noticed the type of work you do about people who are "unfixed" and I resonate with that word. I wanted to know more, but had no clue you had a powerful personal story of being "unfixed." Then March 23 I was snagged by a repost of the preface to your serial memoir and binge-read it in 24-hours. Now I see the strength and value in participating in a community of writers. Thanks for opening the door so I feel welcome.
Welcome to the family Grace! I'm so glad you're seeing the value of this community. It's been life-changing, and I know I'm not alone when I say this. So happy that unfixed opened this door.. come on in! There is an endless source of inspiration, kindness and wisdom. xo
Absolutely. In fact, the tagline to Unfixed is "not fixed but far from broken." ;)
So I am very much in alignment with your philosophy. I would say "unfixed" and "unbroken" are interchangeable in the way this concept is explored through my film work. Instead of focusing on the medical details of not having cures, the content I create lives deep within the psychological and spiritual realms where we allow our experiences of disability to bring us into wholeness. Thank you for sharing your experience. I wholeheartedly embrace UNBROKEN!
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.
Thank you Joyce. I cherish your feedback and am so glad this work is offering some buoyancy in your experience. I agree, acceptance is the hardest part... and I'm not even sure acceptance is the word I use for myself. Sometimes it feels too resigned. I prefer the word "allowing." When I allow my physical challenges to co-exist with the rest of me, I feel empowered, as if some wiser, more loving part of me is saying "Yes, you can join us. Let me hold you."
allowing is a great word ... I'm going to roll around in it for awhile.
It's a little like Rumi's "Guest House." Allowing a visitor (even if they stay forever) is different than accepting that they're already in your home. Are you familiar with that poem?
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.
One of my favorites and a great connection that deepens the thinking about all of this. Thanks ... and thanks for posting the whole poem. "Begrateful for whatever comes because each has been sent as a guide from beyond." If I were into tattoos, I might choose that one.
Joyce, the quote you pulled is the one that jumped out at me, too.
This may have been a short clip, but it was absolutely packed with meaning, Kimberly. Dylan’s warmth and zest for life beams clear through the screen. ❤️
I'm glad you felt that! I visit him weekly to read sections of his memoir as it progresses and while his body hasn't moved in 3+ years, there is so much vitality under his skin. It's quite surreal to feel and I attribute that to all the inner work he's committed to doing until his very last day.
An especially helpful reminder for those of us who are always looking for happiness and meaning somewhere other than where we are, right now, in this moment.
Keeping him and his family in my heart. ❤️
Yes ... and I keep wondering what stops that zest and courage from showing up in less challenged lives ... what stops me from showing up in my own far less challenged life?
You and me both, Joyce. But it’s a great question to *never* stop asking ourselves!
A very noble question indeed.
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.
Yes! Those eyes. There is a magnificent intelligence and wisdom that shines through those eyes. His inner circle has said that he always had that, even before the diagnosis, but they've become ever more radiant after.
This post was my introduction to unfixed last fall. What an inspiration!! I had not started following anyone much on substack, because I didn't want to be distracted from doing my own writing. I noticed the type of work you do about people who are "unfixed" and I resonate with that word. I wanted to know more, but had no clue you had a powerful personal story of being "unfixed." Then March 23 I was snagged by a repost of the preface to your serial memoir and binge-read it in 24-hours. Now I see the strength and value in participating in a community of writers. Thanks for opening the door so I feel welcome.
Welcome to the family Grace! I'm so glad you're seeing the value of this community. It's been life-changing, and I know I'm not alone when I say this. So happy that unfixed opened this door.. come on in! There is an endless source of inspiration, kindness and wisdom. xo
Oh my goodness, so beautiful, Kimberly! Thank you for your work in the world. 💖 I'm really looking forward to the film.
Thank YOU for taking time to let Dylan into your heart. xo
WOW!
Absolutely. In fact, the tagline to Unfixed is "not fixed but far from broken." ;)
So I am very much in alignment with your philosophy. I would say "unfixed" and "unbroken" are interchangeable in the way this concept is explored through my film work. Instead of focusing on the medical details of not having cures, the content I create lives deep within the psychological and spiritual realms where we allow our experiences of disability to bring us into wholeness. Thank you for sharing your experience. I wholeheartedly embrace UNBROKEN!