To be unfixed is to be liberated from expectations of how a life should be lived and how a body should feel. Instead of judging our experiences as good or bad, we are learning to allow them to into a more inclusive definition of what it means to be alive. Ultimately at the end of every day, we want to feel that love outweighed the pain but we're not always successful. And that's ok.
My intent is not to diminish what anyone else suffers through , while trying to live their lives . But Dylan ,is the one person above all others presented here, showing us the undeniable evidence of how little we understand of the capacity of the human spirit . The only tangible access we are aloud is the visual, the very tip of the exposed. Iceberg below . In my wonderful life, when the depth of discomfort takes me down , I choose to be thankful as there are many who carry much more than I do . When I listen to Dylan , hear him articulate his thoughts through assistive technology . Time consuming him , literally . And what does he so carefully choose to say?
“It takes rain to get a rainbow…”
I read this through tears . It really is all encompassing .
“It's human nature to judge our experiences. “
For just one simple moment of thought , I indulge myself ; what would it be like if human beings did not hold the top spot in the entirety of the animal kingdom , for our superior intellect . Maybe we would not have the capability to make sense of pain or its thresholds, or how we personally affect the lives of those around us. No capacity to judge , ourselves. There might not “be good” or ”bad days.”
Your video series is quite remarkable. I know it will eventually find its place where it will help many to; “Seek first to understand , then to be understood.”
Yeh, Dylan always gets straight to the heart of it. I always appreciate the balance of the more “human” and practical experiences alongside Dylan’s colossal and cosmic wisdom. I think even before ALS Dylan was this way, which created a powerful lens for him to then experience the disease through. 🤍🙏
Acceptance is always the key (to staying sane, at least) for me. Sounds simple, but it’s not easy. And it’s not a one-and-done deal, but a process that never ends. Thanks for this reminder on a day when I’m struggling with what is. And what might be. And what will never be.
These stories fill me with such hope and peace, Kim - their bravery is very grounding... 💜 That shot of Dylan before ALS took hold was such a stark reminder of how powerful his attitude and positivity is now.
I’m so glad you feel this way Troy. They do the same for me. It’s been interesting to hear the spectrum of responses to these videos, less so much here on Substack, but even some inner-circle friends have said they can’t watch them, “it makes me too sad.” And it just baffles, because for me, hearing stories of truth in all its color and shape, the good bad and ugly, makes me feel hopeful and uplifted. So I’m glad I’m not the only one!
I understand the sentiment, but also - I wonder if carrying such fear of sadness might be alleviated by opening yourself up to other people's stories about their journey through pain to joy... Maybe.
Have you ever heard of the story called ‘The Chinese Farmer’ Kimberly? It’s a short 2-3mins story you can easily find on YouTube. But essentially it’s a sort of parable which highlights how, maybe we don’t need to label or define everything that happens to us as good or bad etc., because ultimately when we zoom out something we labeled as bad led to something we now label as good as things are interconnected.
All that to say, this piece reminded me of that and I figured you might be interested in it.
Also, —- “To be unfixed is to be liberated from expectations of how a life should be lived and how a body should feel.” — love this line!
You will be encouraged! Anyone with a chronic illness. You are not alone. Read this, watch the video that Kimberly made. The gentleman--forgive me, I missed his name-- with Lou Gehrigs is poet, indeed.
So great! I have to say it was really powerful seeing someone represented... having a seizure and showing facial paralysis... it's so rare. I just want to ask her... how are you managing? Do you have family? My own family still doesn't understand my seizures--the impact they have, the injuries they cause. Not a single one came to see me in the hospital after my last one. Or helped after I came home... they just flee or say I belong in assisted living. It's simply too frightening for them. The only thing I have is the other mothers here who all understand that it could have happened to any of them too and so they are right here.
Most of the other people I know with epilepsy are so adept at hiding their seizures, they often hide them from themselves and then are caught off guard. Sometimes you have to tune into the instinctive prodromal part of your brain and let the bad days be the very bad days... I do wish work in the US understood that more.
Sweet jesus Alisa, this has my brain in a fit. After everything you've been through and to have a family that doesn't understand or demonstrate compassion? Wtf? I can't even comprehend what it might take for them to lean in. It's understandable (though not permissible) for invisible disorders like mine, but when someone is in a full blown seizure with multiple fascial fractures, surgery, and a nearly severed carotid? I mean. Renée also expressed feeling quite isolated. She has a very loving partner but other than that, has felt on her own. Her seizures and cluster headaches began after being struck by a car in a pedestrian crosswalk and spent years in and out of the hospital in recovery. I think she's also expressed frustration with the medical system in the Nederlands; once she was "recovered" from the accident, they haven't been as responsive with any of the lingering, but just as debilitating symptoms. I would love to dig more into this topic with you Alisa if you ever want to do an interview. It would do a world of good to hear the nuances of your story and I know others need to hear how you're navigating it all. x
Oh, so she is in the Nederlands--where you have wait a long time for specialist care, but at least you're not waking up to a sudden mountain of debt. That they don't have good long term symptom management is a surprise to me. At least she has a partner, but that has to be isolating and tough on a relationship. I find very few people willing to take on a person with seizures... it's a charm offensive for sure! I can't explain my family's reaction. I've tried to show them videos of what my grand mals are like and their response is always very stoic. I think fear and stigma is at the root of it. If I didn't think it would kill my father, I'd love to do a series of video conversations between us about why he's never shown up. I suspect, the Norseman in him would say, "She's like a cat. I've always known she'd land on her feet..." Except that hasn't been the case lately. 😂
Dylan's wisdom consistently lands like a body blow, it's that powerful. I eagerly look forward to the day that I can buy his book. Thank you for what you're doing, the holding of seeming opposites is important beyond words.
My intent is not to diminish what anyone else suffers through , while trying to live their lives . But Dylan ,is the one person above all others presented here, showing us the undeniable evidence of how little we understand of the capacity of the human spirit . The only tangible access we are aloud is the visual, the very tip of the exposed. Iceberg below . In my wonderful life, when the depth of discomfort takes me down , I choose to be thankful as there are many who carry much more than I do . When I listen to Dylan , hear him articulate his thoughts through assistive technology . Time consuming him , literally . And what does he so carefully choose to say?
“It takes rain to get a rainbow…”
I read this through tears . It really is all encompassing .
“It's human nature to judge our experiences. “
For just one simple moment of thought , I indulge myself ; what would it be like if human beings did not hold the top spot in the entirety of the animal kingdom , for our superior intellect . Maybe we would not have the capability to make sense of pain or its thresholds, or how we personally affect the lives of those around us. No capacity to judge , ourselves. There might not “be good” or ”bad days.”
Your video series is quite remarkable. I know it will eventually find its place where it will help many to; “Seek first to understand , then to be understood.”
Yeh, Dylan always gets straight to the heart of it. I always appreciate the balance of the more “human” and practical experiences alongside Dylan’s colossal and cosmic wisdom. I think even before ALS Dylan was this way, which created a powerful lens for him to then experience the disease through. 🤍🙏
Acceptance is always the key (to staying sane, at least) for me. Sounds simple, but it’s not easy. And it’s not a one-and-done deal, but a process that never ends. Thanks for this reminder on a day when I’m struggling with what is. And what might be. And what will never be.
"Ultimately at the end of every day, we want to feel that love outweighed the pain but we're not always successful. And that's ok."
Yes to this.
Thank you for sharing this full spectrum of experience.
You're welcome friend!
These stories fill me with such hope and peace, Kim - their bravery is very grounding... 💜 That shot of Dylan before ALS took hold was such a stark reminder of how powerful his attitude and positivity is now.
I’m so glad you feel this way Troy. They do the same for me. It’s been interesting to hear the spectrum of responses to these videos, less so much here on Substack, but even some inner-circle friends have said they can’t watch them, “it makes me too sad.” And it just baffles, because for me, hearing stories of truth in all its color and shape, the good bad and ugly, makes me feel hopeful and uplifted. So I’m glad I’m not the only one!
I understand the sentiment, but also - I wonder if carrying such fear of sadness might be alleviated by opening yourself up to other people's stories about their journey through pain to joy... Maybe.
Have you ever heard of the story called ‘The Chinese Farmer’ Kimberly? It’s a short 2-3mins story you can easily find on YouTube. But essentially it’s a sort of parable which highlights how, maybe we don’t need to label or define everything that happens to us as good or bad etc., because ultimately when we zoom out something we labeled as bad led to something we now label as good as things are interconnected.
All that to say, this piece reminded me of that and I figured you might be interested in it.
Also, —- “To be unfixed is to be liberated from expectations of how a life should be lived and how a body should feel.” — love this line!
I have not but it sounds lovely! Going to go check it out now. Thank you friend!
I'm seeing now that it's by Alan Watts. Love that guy, living so freely and by his own rules.
Yes, he was the first person I ever heard share it. And yes, I’m a big fan of Alan Watts as well — it’s hard not to be :)
You will be encouraged! Anyone with a chronic illness. You are not alone. Read this, watch the video that Kimberly made. The gentleman--forgive me, I missed his name-- with Lou Gehrigs is poet, indeed.
I’m sure you are right!
So great! I have to say it was really powerful seeing someone represented... having a seizure and showing facial paralysis... it's so rare. I just want to ask her... how are you managing? Do you have family? My own family still doesn't understand my seizures--the impact they have, the injuries they cause. Not a single one came to see me in the hospital after my last one. Or helped after I came home... they just flee or say I belong in assisted living. It's simply too frightening for them. The only thing I have is the other mothers here who all understand that it could have happened to any of them too and so they are right here.
Most of the other people I know with epilepsy are so adept at hiding their seizures, they often hide them from themselves and then are caught off guard. Sometimes you have to tune into the instinctive prodromal part of your brain and let the bad days be the very bad days... I do wish work in the US understood that more.
Sweet jesus Alisa, this has my brain in a fit. After everything you've been through and to have a family that doesn't understand or demonstrate compassion? Wtf? I can't even comprehend what it might take for them to lean in. It's understandable (though not permissible) for invisible disorders like mine, but when someone is in a full blown seizure with multiple fascial fractures, surgery, and a nearly severed carotid? I mean. Renée also expressed feeling quite isolated. She has a very loving partner but other than that, has felt on her own. Her seizures and cluster headaches began after being struck by a car in a pedestrian crosswalk and spent years in and out of the hospital in recovery. I think she's also expressed frustration with the medical system in the Nederlands; once she was "recovered" from the accident, they haven't been as responsive with any of the lingering, but just as debilitating symptoms. I would love to dig more into this topic with you Alisa if you ever want to do an interview. It would do a world of good to hear the nuances of your story and I know others need to hear how you're navigating it all. x
Oh, so she is in the Nederlands--where you have wait a long time for specialist care, but at least you're not waking up to a sudden mountain of debt. That they don't have good long term symptom management is a surprise to me. At least she has a partner, but that has to be isolating and tough on a relationship. I find very few people willing to take on a person with seizures... it's a charm offensive for sure! I can't explain my family's reaction. I've tried to show them videos of what my grand mals are like and their response is always very stoic. I think fear and stigma is at the root of it. If I didn't think it would kill my father, I'd love to do a series of video conversations between us about why he's never shown up. I suspect, the Norseman in him would say, "She's like a cat. I've always known she'd land on her feet..." Except that hasn't been the case lately. 😂
Just yesterday I was playing fetch with my cat Otis and he landed smack on his side at one point. Case in point.
This was beautiful.
Really needed this today. Thank you.
Dylan's wisdom consistently lands like a body blow, it's that powerful. I eagerly look forward to the day that I can buy his book. Thank you for what you're doing, the holding of seeming opposites is important beyond words.