Walking those miles with you Lor has been and is such a joy. You continue to restore my faith in humanity, and I find myself speaking about your presence here often in conversation. “Lor said this, Lor did that…” I sure hope someday we can walk a few of those miles with the same patch of earth under our feet, hearing the same birds, commenting on the same eyes watching us from the ancient bark of trees.
Thank you for this beautiful article - I’m excited to dive into your docuseries next!
I said a lot in my restack - but I believe this is such an important message. When I first became chronically ill I fought my body for a long time. I pushed it, I didn’t listen to it, I tried to play through the pain. I lusted after a cure.
It took me a long time to understand that there was no cure - but there were supportive communities of people who would hold me and help me adapt to my new circumstances. Who would help me find ways to lessen the pain and suffering and discover joy again.
Hello new friend! So happy to connect with you here. "Lusting after a cure" - boy do I know that one. I'm comforted to hear that you found supportive communities to help navigate it all and have experienced the value of holding each other both psychologically and spiritually. It's so important that in a utopian society, I'd have physicians connect their patients to these communities right out of the gate. It's a tragedy that for some, it takes years to even know they exist. (Raising my hand here!) Celebrating you and the joy you've recovered.
Hello right back to you new friend!! I agree - I also wish doctors gave more guidance on finding these communities.
I had ONE doctor do this for me - the cardiologist who diagnosed my dysautonomia. She put me into a rehab program to help strengthen my legs so I would faint less AND you were immediately connected with a social worker who was experienced in the condition. What a difference that made!!
I’m actually working on an article right now about how there’s no welcome guide to the world of chronic illness - but perhaps there should be!
Ha! Thank you! Honestly wouldn't that be wonderful? If they were just readily available anywhere and for anyone who needs them? Add a QR code that would take you to an online database where you could enter your disease and be connected to a support network?
I love that at least here on Substack - we can start connecting people with supports even if it's not quite as simple as a pamphlet that really SHOULD be in every hospital and doctors office. I hope in time we will see more chronic illness collaborations and 'pods' so that patients can find each other, support one another and share tips and resources.
Your words are like much needed balm and wisdom. I am uncertain I would ever fully heal, but there is enough of me to love and cradle parts that need to be held, there's enough of those who love me to hold them, too. There's enough of us to hold each other when one of us has a hard time holding on. Love and strength to you, always.
Always enough of us to hold, right? It’s almost as if I’m the holding, our energy expands, restores, replenishes. Holding nourishes both the giver and the receiver, and I know even when I hold those parts of myself, something relaxes and feels safe.
So inspiring. Thank you for sharing these beautiful stories of a community coming together for hope and healing through the emotional journey of living with chronic illness.
Thank you for what you are doing with the Unfixed documentary. The tender expressions of the folks in this video touch my heart deeply. Creating a world where we can walk with open hearts and hold for each other is a worthy goal.
So much wisdom that's especially meaningful to the epilepsy community--many of whom are homebound: "And through the simple act of gathering, sharing, listening, and holding, time transforms our bodies into more than finite bags of skin and bone, but into vessels of truth that live on, even when our bodies don’t."
Thank you for creating community and capturing such honest, courageous, and remarkably accepting responses. Such nobility and humanity in all of you...Thank you.
It is the reason I happened by, oh, let’s just say 200 miles ago. Put down roots, and decided to stay. Can’t get rid of me. My roots are too deep and I’m being nourished by the soil. Is there strength in numbers? Though each of us are made to carry our own, in this sometimes lonely world of the ‘unfixed’, it is the ‘glue’ your words contain that holds us together. On our own individual patch of earth. As always Kimberly, thank you.
Of all the things I watch online, these videos are some of the most impactful and moving. It's amazing to hear how this process of sharing and reflecting for these wonderful individuals has helped, or simply has allowed them to share their story.
I especially like that you put “other” in quotes, nodding towards our oneness, and also the multitudes that “other” can represent, both human and non-human.
All in this unfixed series, your courage is inspiring beyond words; your sincerity surely opens every heart and mind this film meets; your vulnerability could move mountains; and your tender care for one another feels from this side of the camera, like family. I am made more human by having watched you all share and reflect. Kimberly, thank you. With love, Renée
Walking those miles with you Lor has been and is such a joy. You continue to restore my faith in humanity, and I find myself speaking about your presence here often in conversation. “Lor said this, Lor did that…” I sure hope someday we can walk a few of those miles with the same patch of earth under our feet, hearing the same birds, commenting on the same eyes watching us from the ancient bark of trees.
I feel the same way…
Thank you for this beautiful article - I’m excited to dive into your docuseries next!
I said a lot in my restack - but I believe this is such an important message. When I first became chronically ill I fought my body for a long time. I pushed it, I didn’t listen to it, I tried to play through the pain. I lusted after a cure.
It took me a long time to understand that there was no cure - but there were supportive communities of people who would hold me and help me adapt to my new circumstances. Who would help me find ways to lessen the pain and suffering and discover joy again.
How wonderful that was!
Hello new friend! So happy to connect with you here. "Lusting after a cure" - boy do I know that one. I'm comforted to hear that you found supportive communities to help navigate it all and have experienced the value of holding each other both psychologically and spiritually. It's so important that in a utopian society, I'd have physicians connect their patients to these communities right out of the gate. It's a tragedy that for some, it takes years to even know they exist. (Raising my hand here!) Celebrating you and the joy you've recovered.
Hello right back to you new friend!! I agree - I also wish doctors gave more guidance on finding these communities.
I had ONE doctor do this for me - the cardiologist who diagnosed my dysautonomia. She put me into a rehab program to help strengthen my legs so I would faint less AND you were immediately connected with a social worker who was experienced in the condition. What a difference that made!!
I’m actually working on an article right now about how there’s no welcome guide to the world of chronic illness - but perhaps there should be!
I sense you might be the perfect person to write it! I’ll distribute the pamphlets everywhere (perhaps we can throw them from planes?) 😂
Ha! Thank you! Honestly wouldn't that be wonderful? If they were just readily available anywhere and for anyone who needs them? Add a QR code that would take you to an online database where you could enter your disease and be connected to a support network?
I love that at least here on Substack - we can start connecting people with supports even if it's not quite as simple as a pamphlet that really SHOULD be in every hospital and doctors office. I hope in time we will see more chronic illness collaborations and 'pods' so that patients can find each other, support one another and share tips and resources.
Your words are like much needed balm and wisdom. I am uncertain I would ever fully heal, but there is enough of me to love and cradle parts that need to be held, there's enough of those who love me to hold them, too. There's enough of us to hold each other when one of us has a hard time holding on. Love and strength to you, always.
Always enough of us to hold, right? It’s almost as if I’m the holding, our energy expands, restores, replenishes. Holding nourishes both the giver and the receiver, and I know even when I hold those parts of myself, something relaxes and feels safe.
I feel that way too. And when I hold others, in my own way, I can forget about what feels too heavy and imperfect.
So inspiring. Thank you for sharing these beautiful stories of a community coming together for hope and healing through the emotional journey of living with chronic illness.
"Turns out we can only cure a small amount of disease. The rest of it needs to be held."
Such powerful, gracious, profound words. Learning to hold what we don’t want — what a deep lesson.
What an incredible series. I even thought I had heard Lor before but worth every moment to listen again if I didn't imagine this.
Thank you for what you are doing with the Unfixed documentary. The tender expressions of the folks in this video touch my heart deeply. Creating a world where we can walk with open hearts and hold for each other is a worthy goal.
So much wisdom that's especially meaningful to the epilepsy community--many of whom are homebound: "And through the simple act of gathering, sharing, listening, and holding, time transforms our bodies into more than finite bags of skin and bone, but into vessels of truth that live on, even when our bodies don’t."
Thank you for creating community and capturing such honest, courageous, and remarkably accepting responses. Such nobility and humanity in all of you...Thank you.
It is the reason I happened by, oh, let’s just say 200 miles ago. Put down roots, and decided to stay. Can’t get rid of me. My roots are too deep and I’m being nourished by the soil. Is there strength in numbers? Though each of us are made to carry our own, in this sometimes lonely world of the ‘unfixed’, it is the ‘glue’ your words contain that holds us together. On our own individual patch of earth. As always Kimberly, thank you.
Informative
Thanks for being here!
You're welcome always God bless you and your family forever
Of all the things I watch online, these videos are some of the most impactful and moving. It's amazing to hear how this process of sharing and reflecting for these wonderful individuals has helped, or simply has allowed them to share their story.
It honestly brings me to tears to watch this.
Thank you for sharing.
Your presence here is felt and so very appreciated. Thank you dear human.
What a lovely community. So inspiring. Thank you for taking us on their journeys.
Yes, in many cases it seems healing is connecting through relationship…it is bridging the gap between myself and the “other”…
I especially like that you put “other” in quotes, nodding towards our oneness, and also the multitudes that “other” can represent, both human and non-human.
Often it seems the “other” represents some unconscious fear…
My heart is filled to the brim with compassion for these beautiful people, what a lot they have to teach us. 💜
All in this unfixed series, your courage is inspiring beyond words; your sincerity surely opens every heart and mind this film meets; your vulnerability could move mountains; and your tender care for one another feels from this side of the camera, like family. I am made more human by having watched you all share and reflect. Kimberly, thank you. With love, Renée