Thank you for expressing and so eloquently, so beautifully, everything I am also experiencing. Everyday There is another physical loss, another adjustment. I am not who I used to be and yet I am more than I ever was. As the poet philosopher says, the deeper that sorrow is carved into our being, the more joy we can contain. Here is wishing you more joy and continued love!
Thank you for sharing your story Hal. The way you string the words together brings to life the reality of chronic illness in all it's cruelty, yet pays homage to the utter magnificence of the human soul---which can shine in even the most horrific experiences somehow. This piece reminds me a lot of Ram Dass's work at the end of his life after his stroke, when his body climbed the mountains and it was now his soul's time to take up the work of living. Deeply inspiring and heart wrenching in its truth.
The craving is always waiting, yeah? I understand it a little better every time I sit with it and don't act on it, but those times are few between. Love to you, Hal.
Thank you. Wow. So familiar. When I was first bed bound by M.E. I called myself a monk and fully embraced my new vocation. I spent the first year accepting that if I was never able to do another “useful” thing (as society defines it), I was still the divine Love of God and could embody that presence to the rare human encounter I could tolerate.
When I could tolerate sound I listened to meditations and James Finley’s Turning to the Mystics. I was truly grateful for the “opportunity” to slow down, listen to my body, expand my sense of Spirit, and not “have to” push through these impossible symptoms and sensations (as if I even could have).
And yet...I feel compelled to write my story. My brain and body haven’t cooperated yet but the pull is there and feels just as divine as the acceptance of my limitations. (Also the more years that go by the more I miss my job, my brain... myself...and grieve the loss of my usefulness).
Thanks for being visible out in the world when so many of us are still completely invisible and alone.
I am surprised that you learn the Daoism. We only learn a few Daoism artcles from Chinese textbook because we should learn ancient literatures. We need to know the well-known writers representative works and their thought of different dynasties
That was beautiful Hal. I have that severe ME/CFS label, and I always say it is like living with a strict Zen master. I too liken the experience to being an unwilling monk, so I loved hearing you say the same. It is such a powerful doorway to spiritual enlightenment isn't it, even though we don't choose it. I remember listening to Michael Singer podcast, and he said something along the lines of "a healthy body isn't the answer, lots of very unhappy people live in healthy bodies"... and that kinda set me free in one way, or at least opened the door to the potential of joy beyond constraints. Wishing you a nourishing day 🩷.
Good morning Hal. No I wouldn't say I have reached total enlightenment like the masters speak of, but I am definitely well on the pathway and my level of joy and contentment attests to it. I like to think of it as an on going process of Lightenment.
Despite having absolutely nothing I thought I wanted or needed, in a body that functions with a severe level of illness of which I need not explain to you coz you get it, I find myself more content than I ever have been. To the point Hal.... and this is bold and probably inconceivable to most, I don't think I would take my old life back now, if it came with the same level of consciousness I had before I was ill.
Don't get me wrong I still long for a fully functional body and the things it could do. I fantasise about going for walks, immersing myself completely in the wild outdoors, and doing all the things I loved before. I haven't ruled out hope that one day this will happen, but I realise now it isn't what you do, where you go or what you have, it is the state of consciousness in which you experience it all that matters, that is what brings real joy. I see all my doing before illness was chasing this joy, Which I believe was found outside of me.
Now I see the joy and love exists within, and it depends on nothing external. That there is true freedom, and you don't need a healthy body to achieve it. That is the blessing of CFS/ME strict zen master, it takes away your ability to do, and places you firmly in the lap of being, the doorway to your hearts true desire.
I don't know how to end this, except in gratitude to your original post, and the offer of sharing my experience with you now. Thank you Hal, if digital hugs exist, then I am sending you one now.
I woke up in my own crash this morning. I don't know why (yet). It may turn out I've caught another Covid variant, or the supplement I added a couple days ago is making me herx. I am not always given to understand. You describe this beautifully when you say a crash seems to be the consequence of breaking rules we've never been told.
In the 35 years since my diagnosis, I've written about this only episodically--mostly because I spent at least 20 of those years trying to live within but otherwise ignore my limitations. Long Covid has turned out to be the beast I can't ignore, and the resulting POTS has meant back to the couch. For how long? I'm not given to know that either.
You write beautifully, and I hope your own limitations allow you to do so without making you pay for it after.
you're a strong man, people without physical challenges can learn a lot from you, I will keep reading your posts, they're well written, and I will pray that you have less "crashes"
We miss you as well Hal and I wish that we were in better physical health to visit you at your home. It seems that this past year has been a blur of doctor and hospital visits punctuated by needed joint replacements.
I understand that our temporary infirmities are nothing by comparison to what you must endure on a daily basis. None the less, we are sapped for time and energy. My chronic illness is for the time being improved and energy is beginning to return. We both hope to see you soon.
Hi Hal—Your story touched me deeply. I have survived breast cancer, so I know a little of what it is like to live with the monster. I am on the other side of the disease now and currently traveling in Italy. While I am not a great photographer, I am wondering if you would like to travel vicariously with me? I understand if you prefer not to. Let me know—Lauren.
From a natural perspective most of ailments needs to run a detox. Specially the skin ones. Furthermore hypersensitive to normal electromagnetic fields can be aswell a factor. I do not know if you are familiar with electrosmog. The higher electrosmog around you it can create that hypersensitive which like allergies may only affect to you but no others living with you. Everything that is electrical has a magnetic field aswell. Electromagnetic waves add up from every electrical element from a bulb, the TV, refrigerator, etc including wifi and routers .. You named.. Our bodies are connected to the environment 24 hours a day, our cell interacts.. The membrane of the cell opens and close to allow elements to come in and out trough the ions electrical charge, the magnetic fields can change the ions charge, like magnets affects each other which will open and close the membrane at wrong times. The result is overproduction of certain elements and others missing, specially serious the elements that cross the brain barrier.. These cause havoc in the body and poisoning. You are surrounded by many electrical apparatus that may highly increase the electrosmog around you and be a factor of your illness, further more wifi should be turn off from the router and you can connect internet with a cable to the router with a 10 $adaptor. Sadly some of the prescriptions have aswell side effect but you need to reduce the electrosmog, do a detox and check your meds.. And you may fully recover! Some people have been diagnosed with incurable cancer and they are alive and well after many years following detox and other natural ways. Of course your doctors are not going to support this. You need a good naturopath or a person that can help you to try something different.. I leave you with a video on hypersensitive, and what people have done to recover and a link to bioinitiative 2012 where you can find research for many years on what hypersensitive to electromagnetic fields can cause including wifi..
Hope it helps 💌🙂
👀🔥🔥🔥Lots of Scientific evidence on electrosmog, hypersensitive to electromagnetic fields from many years to now, still so much ignorance in the general public 💌🕊️
Thank you for expressing and so eloquently, so beautifully, everything I am also experiencing. Everyday There is another physical loss, another adjustment. I am not who I used to be and yet I am more than I ever was. As the poet philosopher says, the deeper that sorrow is carved into our being, the more joy we can contain. Here is wishing you more joy and continued love!
You’re one of my favorites Sue. Thank you for Sunday time. ❤️
Thank you for sharing your story Hal. The way you string the words together brings to life the reality of chronic illness in all it's cruelty, yet pays homage to the utter magnificence of the human soul---which can shine in even the most horrific experiences somehow. This piece reminds me a lot of Ram Dass's work at the end of his life after his stroke, when his body climbed the mountains and it was now his soul's time to take up the work of living. Deeply inspiring and heart wrenching in its truth.
Thank you so much for such a beautiful comment. ☀️
The craving is always waiting, yeah? I understand it a little better every time I sit with it and don't act on it, but those times are few between. Love to you, Hal.
“I understand it a little better every time I sit with it and don’t act on it.” Truth.
I love you, Hal. I’m here for you. And I’m so proud of you, too! Keep fighting the monster, the victory will be yours in the end. 💚
You’re the best, Natalie. I’m honored to be recommending your Substack — (and to be your friend) 💙
I had a post go viral this week as well, and learned a similar lesson. I hope we both go look at the wildflowers instead of the notifications!
Thank you. Wow. So familiar. When I was first bed bound by M.E. I called myself a monk and fully embraced my new vocation. I spent the first year accepting that if I was never able to do another “useful” thing (as society defines it), I was still the divine Love of God and could embody that presence to the rare human encounter I could tolerate.
When I could tolerate sound I listened to meditations and James Finley’s Turning to the Mystics. I was truly grateful for the “opportunity” to slow down, listen to my body, expand my sense of Spirit, and not “have to” push through these impossible symptoms and sensations (as if I even could have).
And yet...I feel compelled to write my story. My brain and body haven’t cooperated yet but the pull is there and feels just as divine as the acceptance of my limitations. (Also the more years that go by the more I miss my job, my brain... myself...and grieve the loss of my usefulness).
Thanks for being visible out in the world when so many of us are still completely invisible and alone.
Thank you so much for sharing. I honor your journey. So much loss and so much wisdom.
It takes courage to write your truth, especially if you yearn to have a different truth. Keep writing.
Beautifully done, Hal. But, it left me feeling so sad.
Writing it was a joy. But the sadness is real. ♥️
I am surprised that you learn the Daoism. We only learn a few Daoism artcles from Chinese textbook because we should learn ancient literatures. We need to know the well-known writers representative works and their thought of different dynasties
That was beautiful Hal. I have that severe ME/CFS label, and I always say it is like living with a strict Zen master. I too liken the experience to being an unwilling monk, so I loved hearing you say the same. It is such a powerful doorway to spiritual enlightenment isn't it, even though we don't choose it. I remember listening to Michael Singer podcast, and he said something along the lines of "a healthy body isn't the answer, lots of very unhappy people live in healthy bodies"... and that kinda set me free in one way, or at least opened the door to the potential of joy beyond constraints. Wishing you a nourishing day 🩷.
Thanks so much Emma. I’m glad to connect with you. Have you reached that spiritual enlightenment yet? I’d love to hear more. Hal
Good morning Hal. No I wouldn't say I have reached total enlightenment like the masters speak of, but I am definitely well on the pathway and my level of joy and contentment attests to it. I like to think of it as an on going process of Lightenment.
Despite having absolutely nothing I thought I wanted or needed, in a body that functions with a severe level of illness of which I need not explain to you coz you get it, I find myself more content than I ever have been. To the point Hal.... and this is bold and probably inconceivable to most, I don't think I would take my old life back now, if it came with the same level of consciousness I had before I was ill.
Don't get me wrong I still long for a fully functional body and the things it could do. I fantasise about going for walks, immersing myself completely in the wild outdoors, and doing all the things I loved before. I haven't ruled out hope that one day this will happen, but I realise now it isn't what you do, where you go or what you have, it is the state of consciousness in which you experience it all that matters, that is what brings real joy. I see all my doing before illness was chasing this joy, Which I believe was found outside of me.
Now I see the joy and love exists within, and it depends on nothing external. That there is true freedom, and you don't need a healthy body to achieve it. That is the blessing of CFS/ME strict zen master, it takes away your ability to do, and places you firmly in the lap of being, the doorway to your hearts true desire.
I don't know how to end this, except in gratitude to your original post, and the offer of sharing my experience with you now. Thank you Hal, if digital hugs exist, then I am sending you one now.
I woke up in my own crash this morning. I don't know why (yet). It may turn out I've caught another Covid variant, or the supplement I added a couple days ago is making me herx. I am not always given to understand. You describe this beautifully when you say a crash seems to be the consequence of breaking rules we've never been told.
In the 35 years since my diagnosis, I've written about this only episodically--mostly because I spent at least 20 of those years trying to live within but otherwise ignore my limitations. Long Covid has turned out to be the beast I can't ignore, and the resulting POTS has meant back to the couch. For how long? I'm not given to know that either.
You write beautifully, and I hope your own limitations allow you to do so without making you pay for it after.
Thanks so much for being here, Maggie.
Wow that’s a lot to deal with Monk and so I wanted to say hi, it’s very nice to meet you here.
I also love photography and have a collection of SLR’s and lenses. Was totally checking you out and admiring your lens. 😉 😊
Hi Kristen. It’s great to meet you as well. This Sony Alpha 70-350 is awesome. I barely have to do a thing. Thanks for saying hi. H
70-350 pretty much the most versatile lens on the planet 😊
you're a strong man, people without physical challenges can learn a lot from you, I will keep reading your posts, they're well written, and I will pray that you have less "crashes"
Thank you Rob. H
How incredibly beautiful. Raw, real, and sharing just enough. Thank you
Thank you so much.
We miss you as well Hal and I wish that we were in better physical health to visit you at your home. It seems that this past year has been a blur of doctor and hospital visits punctuated by needed joint replacements.
I understand that our temporary infirmities are nothing by comparison to what you must endure on a daily basis. None the less, we are sapped for time and energy. My chronic illness is for the time being improved and energy is beginning to return. We both hope to see you soon.
Love, Fritz.
Hi Hal—Your story touched me deeply. I have survived breast cancer, so I know a little of what it is like to live with the monster. I am on the other side of the disease now and currently traveling in Italy. While I am not a great photographer, I am wondering if you would like to travel vicariously with me? I understand if you prefer not to. Let me know—Lauren.
Thanks for the offer. Sounds like fun. I’ll message you here. H
From a natural perspective most of ailments needs to run a detox. Specially the skin ones. Furthermore hypersensitive to normal electromagnetic fields can be aswell a factor. I do not know if you are familiar with electrosmog. The higher electrosmog around you it can create that hypersensitive which like allergies may only affect to you but no others living with you. Everything that is electrical has a magnetic field aswell. Electromagnetic waves add up from every electrical element from a bulb, the TV, refrigerator, etc including wifi and routers .. You named.. Our bodies are connected to the environment 24 hours a day, our cell interacts.. The membrane of the cell opens and close to allow elements to come in and out trough the ions electrical charge, the magnetic fields can change the ions charge, like magnets affects each other which will open and close the membrane at wrong times. The result is overproduction of certain elements and others missing, specially serious the elements that cross the brain barrier.. These cause havoc in the body and poisoning. You are surrounded by many electrical apparatus that may highly increase the electrosmog around you and be a factor of your illness, further more wifi should be turn off from the router and you can connect internet with a cable to the router with a 10 $adaptor. Sadly some of the prescriptions have aswell side effect but you need to reduce the electrosmog, do a detox and check your meds.. And you may fully recover! Some people have been diagnosed with incurable cancer and they are alive and well after many years following detox and other natural ways. Of course your doctors are not going to support this. You need a good naturopath or a person that can help you to try something different.. I leave you with a video on hypersensitive, and what people have done to recover and a link to bioinitiative 2012 where you can find research for many years on what hypersensitive to electromagnetic fields can cause including wifi..
Hope it helps 💌🙂
👀🔥🔥🔥Lots of Scientific evidence on electrosmog, hypersensitive to electromagnetic fields from many years to now, still so much ignorance in the general public 💌🕊️
https://odysee.com/@TCP_News_Earth_Planet:f/Symptoms_on_Hypersensitivity_ToElectromagnetic_Fields:5
BioInitiative Report 2012: Table of Contents
https://bioinitiative.org/table-of-contents/