Let’s be clear up front: Dylan’s story isn’t the typical Hollywood redemption arc we’ve been conditioned to revere. Our hero dies in the end. Not now, as I’m writing, perhaps not even yet as his memoir lands on shelves, but we know without doubt that his body ultimately succumbs to the ravaging wildfire that is ALS. And yet even as the physical diminishes, the spiritual expands. “He shall overcome” is a nuanced, quiet process in this instance—one that I argue is inversely and exponentially proportionate to the rapid decline of matter. A star collapses into itself and produces a supernova.
The certainty of uncertainty…a lived experience for the unfixed indeed….your words pierce with truth Lor. How could I ever properly respond to your comment?! Words take shape as wings, bowing monks,, and deep deep taproots. I am grateful for your penetrating presence here, for understanding on a cellular level the fragile magnificence of life and the kindness that buoys it. ❤️
"He elaborates on this experience in his memoir and how, while he was rendered completely helpless with the eyes of an entire film crew on him, he chose to face it down as 'another opportunity to practice equanimity.'"
Few of us will experience work this deep in our entire lives, yet we will quite certainly feel put upon and chafe at life's unfairness towards us, again and again. This is a person you could absolutely trust to remain steady and calm if your life depended on it, something most of us may only experience a handful of times in our lives, and yet because of the hand he's been dealt and is so deliberately living, there's almost nothing he could actually do to help in an emergency. The irony is nearly crushing.
I can't even imagine how to add anything meaningful to what you're offering up here, Kimberly, but silence, well, it just seems like silence in the face of this sort of vulnerability and risk-taking would be far worse.
You have told an incredibly moving story in this piece about your efforts to relay the experience of the ill and disabled in all its difficulty and frustration, along with the grace and fortitude they show as they accept and work with their limitations. It’s an extremely important message about how as humans, we are of infinite value until the very end of our lives. Thank you for telling it.
"Infinite value until the very end"... I LOVE THIS SO MUCH!!!!! It's a tragedy that our culture has ever told us otherwise. I just spoke with a physican the other day whose research focus is on menopause and she applauds human evolution to continue life beyond reproductive years and hypothesizes that elder wisdom is invaluable to the survival of the species. :) And even though Dylan is no were near his "elder years" he, too, is learning the paradoxical lessons of freedom within limitation that many of us never have to experience until the end of life.
This is so powerful, Kimberly - I'm very moved by your story of working with Dylan. The anecdote about sitting for 30 minutes unable to communicate was especially difficult but also so filled with kindness and patience. We really don't realize the depth of bravery and the human spirit until we experience this kind of challenge ourselves, or encounter someone who has. Big love to you and your friend. 🤍🤍🤍
KimberlyIn 1998, I read “The Diving Bell and the Butterfly,” by Jean-Dominique Bauby and Dylan’s story brought it back to mind. I loved it.
Amazon wrote this in its description:
“In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young children, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem.
After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.”
Bauby died in 1997, but left this great gift to the world. It’s sold as an audio book as well as in print. Dylan might enjoy listening to it. Their situations are so similar. Bauby had a gift in him that he found a way to give to the world, much like Dylan has, in spite of what to most people would be insurmountable odds. Dylan’s story is much the same, with differing in details and severity only.
Kimberly, I wonder if Dylan would take comfort in it. Just a thought.
Thank you Margaret for reminding me of this extraordinary book and film. You’re so right, Dylan would appreciate feeling/hearing the parallels of his own story to Bauby’s. I’m going to head over to Amazon now and gift him the audio book. Blessings and gratitude.❤️
Our culture still has much to learn & reveal about, as you so aptly put it, “the paradoxical lessons of freedom within limitation”. As a moderately healthy senior, I’m puzzled, too, as to how we as a culture seem to overlook the wisdom of the “unfixed” and elderly in deference to youth. And yet it’s clear to me that awakening to “freedom” usually occurs through surrendering whatever egoic limitations we’re caught up in!
Where/how can I send some token of support for getting Dylan’s book published?
Such a thoughtful and deft reflection! Makes me want to do a whole series interviewing elders. The illumination would be blinding.:) (Blinding the ego, giving way to deeper, truer sight.) If you want to further support the publishing of D’s book, you can always contribute to the original Go Fund Me. It’s still open. https://gofund.me/8dfb5159
What an extraordinary story, and you tell it beautifully. I'm no longer a publisher myself, but I work freelance for Norton and could recommend you to an editor there. You can email me at allegra@imaginativestorm.com
This is such an incredibly moving story. I remember you telling me about Dylan when we spoke before. I cannot imagine being locked in this way and maintaining such an indomitable spirit.
They actually call it "being locked out" when communication is no longer an option. Dylan has chosen to end his life before this happens and rightly so, I can't fathom the terror of not being able to decide.
Meeting Dr. Dylan was the highlight of my day (now yesterday), and right away I felt astonished---at his open, beaming face---and then his words about the world---how its kindnesses allowed him to survive so far. I love how you named him "Vitamin D".
I had so many thoughts in response, but deleted 2 replies... now trying again (insomnia clarifies things, sometimes).
Images swirl around from my RN days. Intense stuff---especially of my years on the neuro unit. The complexities of healing you and Dylan and others talked about rip into me, especially this part: "...whether we’d give up all we’ve learned from chronic illness in order to be healed."
As I sit here in the dark, in the deep quiet of 3am, I feel the heavy stuff, keep trying to imagine where Dylan's courage comes from as his eyes lose their movements...
Tears rise. I look at his face again---he is shining---yeah, super-nova light...
Thank you for knowing just what to do---for all it took. What matters is that you did it, persisting, together, through all the stuff that hit, and with his days closing so quickly. Because of your intuitive heart, "Dylan's dream to heal others" is so very bright.
Toni, your thoughtful, deeply reflective reply stopped my heart. If only all humans had your capacity to feel deeply into another's plight, no doubt, this made you an extraordinary nurse. Yes, that face... he truly is sunshine embodied. The question "would we give up everything we'e learned in order to be cured" was a provocative one, to say the least. If you'd like to hear all their responses, including Dylan's, you can view that here: https://youtu.be/AGnchFpQ3k4?si=akwEhc6sbrPUTYtd. With a heart full of gratitude for your radically attentive soul, xo
As a woman with a chronic incurable degenerative illness , I am grateful I found this read for so many reasons. Thank you and I look forward to reading his memoir. I think he will teach me how to live with my chronic illness better.
So happy to find you here Sarah. Indeed, Dylan's wisdom will be a salve to many of us living with chronic disorders. You may find some other voices of solidarity as well in the doc-series where over 20 patients, including Dylan, reflect on certain topics. Occasionally I post those episodes here but you can find them all through my website: www.unfixedmedia.com Wishing a calm day ahead.
Thank you, Kimberly! There is so much I want to say, I am just feeling gratefully overwhelmed right now. I have had unilateral Meniere's Disease since I was 21, and I went bilateral last year at age 51. 2023 was so difficult. I lost myself. I didn't want to live anymore. I made the decision that I would pivot in 2024 and become more connected to the online community. I am on Instagram and follow unfixed there. I love the website too. I was a VEDA Ambassador, but it was just too much at the time. There is so much hope online. I have one very close friend, Heather Davies who also has Bilateral Meniere's. She literally saved me last year. I wrote a letter to my MD for the Book "Dear Meniere's, just before I went bilateral. It was heartbreaking. I almost didn't write my letter but I am thankful I did because it helped me to dip my toes into this community. I want to help others and connect with others through more writing, I have so many thoughts and ideas in my head and it's hard to organize it all. (Brain Fog!!) In the meantime, I am conveying to my followers on Instagram that I want to connect, so I write to them. I need community and with my hyperacusis, going out into the world and being with people triggers my symptoms. I really had no community except for Heather. I started searching for MD warriors on substack but haven't found any as of yet. But I'm grateful I have made a connection with you. You are doing amazing things. I'm so inspired. Incredibly inspired. Thank you for all you do to shine a light on invisible chronic illnesses. Sincerely, Sarah
Oh my goodness. Thank you for sharing some of your story Sarah. I know Heather well, we worked together on her episode last year and it was so dear to connect with a fellow vestie, hear how MD ravaged her life and see how she's slowly putting the pieces back together again. I haven't come across any MD sufferers over here but I did find another MdDS'er! So I'm thinking it might just be a matter of time. I do hope that the fog lifts occasionally so you can write, I have found such a supportive community over here... different from IG in that I'm not interacting with many different walks in life, not just chronic illness, but still finding such love and solidarity in this human family. I would love to read what you shared in "Dear Meniere's" if you ever decide to post it here. xo And p.s. THANK YOU for becoming a paid subscriber. What a generous act of support... know that it is deeply appreciated and every penny goes right back into continuing to create content for the unfixed community.
Dylan’s quote at the beginning is incredible. Your writing throughout this piece and the way the two of you have interacted through your work with Unfixed is touching. And I have no doubt Dylan’s memoir will be amazing.
When I saw the title of your story, it was hard enough to move forward and decide to read it.
Now, I feel a demanding need , almost more obligation to write a comment. After all, Dylan infused the entirety of his life into your interview. And you Kimberly, did the same. As a person who joined the ranks of the “unfixed” many years ago, I already learned there is a certainty in life that most people do not stop to give their attention to. Not an easy education.
Chloe Hope (Death&Birds/Substack) has so eloquently stated;
“…I contemplate the fact that I am not guaranteed the day. Being human is an implicitly fragile endeavour…”
Not only are we “not guaranteed the day”, a part of “being human” is, that none of us are exempt from the ravages of injury or disease. In that light, I will direct my heart to send forth a thank
you. To both of you. You’ve given what should be a mandatory education from an unwavering spirit. It is evident even here in your comments and in your “unfixed” interviews. We tend to look at, or read about extraordinary people living with life’s circumstances. Do we see, do we understand ? We must look past the fact that it’s happening to Dylan , a stranger, or a family member. This, can, be us. This could be you.
Sometimes life changes, happens in a day, in an hour, or in a span of many years .
“All we have to decide is what to do with the time that is given us.”
(JRR Tolkien-Gandalf)
With your guidance, Dylan has done just that.
This story, his story, is so much more than watching how one person has learned to convince himself and those around him that ‘he can do this‘, using the human spirit in ways that are still unknown to scientific research. It is a truth, a life lesson for each of us to carry forward. And really, shouldn’t this raise the level of kindness and compassion right up to the stars?
This was so powerful, and Dylan's beautiful soul really fits the nickname you chose for him. I once worked with a young person in a similar situation to Dylan's, as we tried to adapt our speech and language techniques around his needs, and it was an incredible and transforming experience to finally connect with his world, frustrations, sense of humour, and his pain. Thank you so much for giving Dylan a voice; it was mentioned in the comments and I too would love to read more about elder wisdom. I learn so much from my parents and my friends who belong in that bracket, they truly help me live better and inspire me.
Peering into the world of another, especially one that is underrepresented or rarely depicted in media is truly a gift. I love that you used the expression “finally connect,” like an arrival, an exhale an unforgettable aha moment for both parties. And as for elder wisdom… yes! Perhaps a collaboration of sorts down the line? I’d love nothing more.:)
Yay! I'm thinking a fun place to start might be an interview.... if you're up for it. We could talk about some of those elders in your life, or other encounters, that have enriched your life.
Lovely. Going to simmer on this for a bit but I have your beautiful name (I love that it's written with three, simple letters) on a sticky-note. I will circle back to you when it's time!
The certainty of uncertainty…a lived experience for the unfixed indeed….your words pierce with truth Lor. How could I ever properly respond to your comment?! Words take shape as wings, bowing monks,, and deep deep taproots. I am grateful for your penetrating presence here, for understanding on a cellular level the fragile magnificence of life and the kindness that buoys it. ❤️
"He elaborates on this experience in his memoir and how, while he was rendered completely helpless with the eyes of an entire film crew on him, he chose to face it down as 'another opportunity to practice equanimity.'"
Few of us will experience work this deep in our entire lives, yet we will quite certainly feel put upon and chafe at life's unfairness towards us, again and again. This is a person you could absolutely trust to remain steady and calm if your life depended on it, something most of us may only experience a handful of times in our lives, and yet because of the hand he's been dealt and is so deliberately living, there's almost nothing he could actually do to help in an emergency. The irony is nearly crushing.
I can't even imagine how to add anything meaningful to what you're offering up here, Kimberly, but silence, well, it just seems like silence in the face of this sort of vulnerability and risk-taking would be far worse.
I see you.
I see you, both.
Thank you.
🙏🙏🙏🙏Bow
You have told an incredibly moving story in this piece about your efforts to relay the experience of the ill and disabled in all its difficulty and frustration, along with the grace and fortitude they show as they accept and work with their limitations. It’s an extremely important message about how as humans, we are of infinite value until the very end of our lives. Thank you for telling it.
"Infinite value until the very end"... I LOVE THIS SO MUCH!!!!! It's a tragedy that our culture has ever told us otherwise. I just spoke with a physican the other day whose research focus is on menopause and she applauds human evolution to continue life beyond reproductive years and hypothesizes that elder wisdom is invaluable to the survival of the species. :) And even though Dylan is no were near his "elder years" he, too, is learning the paradoxical lessons of freedom within limitation that many of us never have to experience until the end of life.
What a beautiful testament to Dylan's life. I will definitely read his memoir because I can already tell that I will learn so much.
Just being in his presence, I’ve felt a teaching. He’s a remarkable human and I have no doubt his memoir will change many lives.
This is so powerful, Kimberly - I'm very moved by your story of working with Dylan. The anecdote about sitting for 30 minutes unable to communicate was especially difficult but also so filled with kindness and patience. We really don't realize the depth of bravery and the human spirit until we experience this kind of challenge ourselves, or encounter someone who has. Big love to you and your friend. 🤍🤍🤍
It was a very pregnant 30 minutes, followed by hours of the entire film crew listening to Dylan “read” his responses with not a dry eye in the room.❤️
Thank you, thank you, Kimberly, for sharing Dylan!
KimberlyIn 1998, I read “The Diving Bell and the Butterfly,” by Jean-Dominique Bauby and Dylan’s story brought it back to mind. I loved it.
Amazon wrote this in its description:
“In 1995, Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young children, a 44-year-old man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year he was also the victim of a rare kind of stroke to the brainstem.
After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired. Almost miraculously, he was soon able to express himself in the richest detail: dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able eventually to compose this extraordinary book.”
Bauby died in 1997, but left this great gift to the world. It’s sold as an audio book as well as in print. Dylan might enjoy listening to it. Their situations are so similar. Bauby had a gift in him that he found a way to give to the world, much like Dylan has, in spite of what to most people would be insurmountable odds. Dylan’s story is much the same, with differing in details and severity only.
Kimberly, I wonder if Dylan would take comfort in it. Just a thought.
I thank you for reminding me of it. 🤗
Thank you Margaret for reminding me of this extraordinary book and film. You’re so right, Dylan would appreciate feeling/hearing the parallels of his own story to Bauby’s. I’m going to head over to Amazon now and gift him the audio book. Blessings and gratitude.❤️
Our culture still has much to learn & reveal about, as you so aptly put it, “the paradoxical lessons of freedom within limitation”. As a moderately healthy senior, I’m puzzled, too, as to how we as a culture seem to overlook the wisdom of the “unfixed” and elderly in deference to youth. And yet it’s clear to me that awakening to “freedom” usually occurs through surrendering whatever egoic limitations we’re caught up in!
Where/how can I send some token of support for getting Dylan’s book published?
Such a thoughtful and deft reflection! Makes me want to do a whole series interviewing elders. The illumination would be blinding.:) (Blinding the ego, giving way to deeper, truer sight.) If you want to further support the publishing of D’s book, you can always contribute to the original Go Fund Me. It’s still open. https://gofund.me/8dfb5159
What an extraordinary story, and you tell it beautifully. I'm no longer a publisher myself, but I work freelance for Norton and could recommend you to an editor there. You can email me at allegra@imaginativestorm.com
Thank you Allegra, this is so kind of you. I will email you now.
This is such an incredibly moving story. I remember you telling me about Dylan when we spoke before. I cannot imagine being locked in this way and maintaining such an indomitable spirit.
They actually call it "being locked out" when communication is no longer an option. Dylan has chosen to end his life before this happens and rightly so, I can't fathom the terror of not being able to decide.
Meeting Dr. Dylan was the highlight of my day (now yesterday), and right away I felt astonished---at his open, beaming face---and then his words about the world---how its kindnesses allowed him to survive so far. I love how you named him "Vitamin D".
I had so many thoughts in response, but deleted 2 replies... now trying again (insomnia clarifies things, sometimes).
Images swirl around from my RN days. Intense stuff---especially of my years on the neuro unit. The complexities of healing you and Dylan and others talked about rip into me, especially this part: "...whether we’d give up all we’ve learned from chronic illness in order to be healed."
As I sit here in the dark, in the deep quiet of 3am, I feel the heavy stuff, keep trying to imagine where Dylan's courage comes from as his eyes lose their movements...
Tears rise. I look at his face again---he is shining---yeah, super-nova light...
Thank you for knowing just what to do---for all it took. What matters is that you did it, persisting, together, through all the stuff that hit, and with his days closing so quickly. Because of your intuitive heart, "Dylan's dream to heal others" is so very bright.
Toni, your thoughtful, deeply reflective reply stopped my heart. If only all humans had your capacity to feel deeply into another's plight, no doubt, this made you an extraordinary nurse. Yes, that face... he truly is sunshine embodied. The question "would we give up everything we'e learned in order to be cured" was a provocative one, to say the least. If you'd like to hear all their responses, including Dylan's, you can view that here: https://youtu.be/AGnchFpQ3k4?si=akwEhc6sbrPUTYtd. With a heart full of gratitude for your radically attentive soul, xo
As a woman with a chronic incurable degenerative illness , I am grateful I found this read for so many reasons. Thank you and I look forward to reading his memoir. I think he will teach me how to live with my chronic illness better.
So happy to find you here Sarah. Indeed, Dylan's wisdom will be a salve to many of us living with chronic disorders. You may find some other voices of solidarity as well in the doc-series where over 20 patients, including Dylan, reflect on certain topics. Occasionally I post those episodes here but you can find them all through my website: www.unfixedmedia.com Wishing a calm day ahead.
Thank you, Kimberly! There is so much I want to say, I am just feeling gratefully overwhelmed right now. I have had unilateral Meniere's Disease since I was 21, and I went bilateral last year at age 51. 2023 was so difficult. I lost myself. I didn't want to live anymore. I made the decision that I would pivot in 2024 and become more connected to the online community. I am on Instagram and follow unfixed there. I love the website too. I was a VEDA Ambassador, but it was just too much at the time. There is so much hope online. I have one very close friend, Heather Davies who also has Bilateral Meniere's. She literally saved me last year. I wrote a letter to my MD for the Book "Dear Meniere's, just before I went bilateral. It was heartbreaking. I almost didn't write my letter but I am thankful I did because it helped me to dip my toes into this community. I want to help others and connect with others through more writing, I have so many thoughts and ideas in my head and it's hard to organize it all. (Brain Fog!!) In the meantime, I am conveying to my followers on Instagram that I want to connect, so I write to them. I need community and with my hyperacusis, going out into the world and being with people triggers my symptoms. I really had no community except for Heather. I started searching for MD warriors on substack but haven't found any as of yet. But I'm grateful I have made a connection with you. You are doing amazing things. I'm so inspired. Incredibly inspired. Thank you for all you do to shine a light on invisible chronic illnesses. Sincerely, Sarah
Oh my goodness. Thank you for sharing some of your story Sarah. I know Heather well, we worked together on her episode last year and it was so dear to connect with a fellow vestie, hear how MD ravaged her life and see how she's slowly putting the pieces back together again. I haven't come across any MD sufferers over here but I did find another MdDS'er! So I'm thinking it might just be a matter of time. I do hope that the fog lifts occasionally so you can write, I have found such a supportive community over here... different from IG in that I'm not interacting with many different walks in life, not just chronic illness, but still finding such love and solidarity in this human family. I would love to read what you shared in "Dear Meniere's" if you ever decide to post it here. xo And p.s. THANK YOU for becoming a paid subscriber. What a generous act of support... know that it is deeply appreciated and every penny goes right back into continuing to create content for the unfixed community.
This beautiful in every way!
Dylan’s quote at the beginning is incredible. Your writing throughout this piece and the way the two of you have interacted through your work with Unfixed is touching. And I have no doubt Dylan’s memoir will be amazing.
Thank you, Kimberly.
Right? His quote really got me thinking about taxes in a new light. ;) Hehe.
When I saw the title of your story, it was hard enough to move forward and decide to read it.
Now, I feel a demanding need , almost more obligation to write a comment. After all, Dylan infused the entirety of his life into your interview. And you Kimberly, did the same. As a person who joined the ranks of the “unfixed” many years ago, I already learned there is a certainty in life that most people do not stop to give their attention to. Not an easy education.
Chloe Hope (Death&Birds/Substack) has so eloquently stated;
“…I contemplate the fact that I am not guaranteed the day. Being human is an implicitly fragile endeavour…”
Not only are we “not guaranteed the day”, a part of “being human” is, that none of us are exempt from the ravages of injury or disease. In that light, I will direct my heart to send forth a thank
you. To both of you. You’ve given what should be a mandatory education from an unwavering spirit. It is evident even here in your comments and in your “unfixed” interviews. We tend to look at, or read about extraordinary people living with life’s circumstances. Do we see, do we understand ? We must look past the fact that it’s happening to Dylan , a stranger, or a family member. This, can, be us. This could be you.
Sometimes life changes, happens in a day, in an hour, or in a span of many years .
“All we have to decide is what to do with the time that is given us.”
(JRR Tolkien-Gandalf)
With your guidance, Dylan has done just that.
This story, his story, is so much more than watching how one person has learned to convince himself and those around him that ‘he can do this‘, using the human spirit in ways that are still unknown to scientific research. It is a truth, a life lesson for each of us to carry forward. And really, shouldn’t this raise the level of kindness and compassion right up to the stars?
This was so powerful, and Dylan's beautiful soul really fits the nickname you chose for him. I once worked with a young person in a similar situation to Dylan's, as we tried to adapt our speech and language techniques around his needs, and it was an incredible and transforming experience to finally connect with his world, frustrations, sense of humour, and his pain. Thank you so much for giving Dylan a voice; it was mentioned in the comments and I too would love to read more about elder wisdom. I learn so much from my parents and my friends who belong in that bracket, they truly help me live better and inspire me.
Peering into the world of another, especially one that is underrepresented or rarely depicted in media is truly a gift. I love that you used the expression “finally connect,” like an arrival, an exhale an unforgettable aha moment for both parties. And as for elder wisdom… yes! Perhaps a collaboration of sorts down the line? I’d love nothing more.:)
That would be an absolute privilege, I would love to💜
Yay! I'm thinking a fun place to start might be an interview.... if you're up for it. We could talk about some of those elders in your life, or other encounters, that have enriched your life.
Oh, okay, I would be guided by you, really, having not done this before, but would love to share and listen to your thoughts and experiences too.
Lovely. Going to simmer on this for a bit but I have your beautiful name (I love that it's written with three, simple letters) on a sticky-note. I will circle back to you when it's time!
This was so moving and emotional to read. Such strength. I hope you're able to find a publisher who can put this out there.