I'm so glad it's not just me struggling with this. This has been the most difficult thing to face on finding out I have chronic illnesses. For me I've been trying to figure out what's wrong with me since I was 16 (15 years ago). Unfortunately I am having to grieve the loss of my hope that one day I'd find out what was wrong and be cured. I think it's important to look at this part of chronic illness too as many people have never known a day without pain or exhaustion in their lives. Finding out you're not even going to experience that "normal" health in your life at all is really huge and I've definitely not even begun to come to terms with it. Thanks for your videos, they have made me realise what I'm feeling is valid.
I sympathise. If the illness is not known people doubt you even have it and can push you into situations that worsen specifically the illness you already told them about. Having no ability to share the story is a harder element.
Wow! This is so insightful and helpful! I was 12 when I was diagnosed with lupus and so trying to process all the changes at that time was too overwhelming. For me, I've found that reinvention of self has allowed me to finally start grieving my past and move forward with creating a new story. Thank you! #chronicillness #lupus #invisibleillness #spoonie
Mereani, I’m so pleased you found this to be helpful. I’m sorry to hear you have been living with lupus since you were so young. It must have been very difficult. But it sounds like you have learned some of these lessons for yourself. I’d be grateful if you would consider sharing this with other folks who might also benefit.
After my first diagnosis I found my life story was no longer about a character that I was interested in writing. I no longer would be interested as an audience if the story took that turn. But I had to keep living or at least I didn't want to die yet. So in my research into philosophy, I went in search of the purpose of life. And the center of my story started to change from the self and my desired vision of life to my relationship to a possible Author of life itself and the search for the objective vision or meaning of life. At first I thought it was Nature, and as long as it seemed to fit the bill of being greater than me, ultimately explaining things, this was sufficient. But there were all kinds of problems with cynic and stoic and neoplatonic conceptions, since it still put me in the center alone. (Same with materialist evolutionism, which eventually seemed false on legitimate Platonic insights and as *not* science but metaphysical theory with data interpreted according to it.) Theism solved this. There was no Other greater-than-self otherwise. Nature was just a tool or extension of myself if I understood it and there was no mystery in principle either this way. Everything was in principle understandable. This meant the human self was the cosmic center. There was no objective meaning to life otherwise only esoterica, arts and myths based on an unjustified axiom of there being only an impersonal Thing at bottom. I finally got this after I contracted my second chronic illness. Theism was the only answer that solved the problem. Idk much about Buber but an "I-Thou" is supposed to become center and I'm still working on that, making it the practical not just theoretical, narrative center. So non-/anti-religious people strike me as wanting sufferers to not find this answer, to stay in a self centered narrative structure where their self can, by turns of fate or chance, become irretrievable and so for one to find it rational to kill oneself. That self-centered, suicide-permitting narrative structure largely influenced my eventually contracting my second chronic illness. This narrative structure explains the atheist agnostic promotion of euthanasia. I find this terribly dark and there will be much darker days ahead as they have their way. They will join with the spiritual not religious people eventually. But their offer of freedom destroys the essence of real religion because it puts the self back in the center.
Very interesting. Thanks for describing your experience for us. The eastern wisdom traditions (eg, Buddhism, Taoism, and Zen especially) emphasize that the self is the center of striving, and root of all suffering. The goal of meditation and the Dharma is to teach people how to escape from the tyranny of the separate self. So if you agree that the separate self is the core problem, then I don’t think theism is the only philosophical or theological principle that makes that point.
I was about to delete this for being too long (and ironically self-centered and preachy) but wow thanks for reading and responding. I'll remember this Corbin Strauss trajectory model of chronic illness. I was looking into Daoism and I still like Laozi but his work seems more like poetry and to function as a Rorschach test for a deeper more determinate and analytically clear interpretation of life. Some people can function seemingly without the left brain but it seems like a handicap. Most if not all of the determinate things that are in the Daodejing I still agree with and I have my readings of it on my channel. Buddhism and especially Zen appear to me to be "hacks" or finding "glitches" in the matrix, this kind of view. But I don't agree with being in any of those panentheist deist polytheist or again naturalist backgrounds as our situation that needs hacking. The hack is they want identity death full stop. I still wanted to live with a self. So full dissolution like this didn't seem viable. Furthermore the ego always comes back as the infinitely regressing background to any previous ego death. Their teachers (I'm most familiar with Alan Watts) say this. This makes sense in Zen where they deny classical logic. The self is negated and affirmed simultaneously and that's supposedly fine to destroy our minds like this too. So they strike me as deeper forms of self-harm. But I agree that they also offer solutions.
![วันเกิดเธอ (TO YOU) - PHUWIN [ OFFICIAL MV ]](http://i.ytimg.com/vi/_ROx1Bj3T0Y/mqdefault.jpg)
I'm so glad it's not just me struggling with this. This has been the most difficult thing to face on finding out I have chronic illnesses. For me I've been trying to figure out what's wrong with me since I was 16 (15 years ago). Unfortunately I am having to grieve the loss of my hope that one day I'd find out what was wrong and be cured. I think it's important to look at this part of chronic illness too as many people have never known a day without pain or exhaustion in their lives. Finding out you're not even going to experience that "normal" health in your life at all is really huge and I've definitely not even begun to come to terms with it. Thanks for your videos, they have made me realise what I'm feeling is valid.
Rachel I’m sorry to hear you’re suffering so. But glad my videos helped you. Please share with other folks in similar circumstances. Thank you.
I sympathise. If the illness is not known people doubt you even have it and can push you into situations that worsen specifically the illness you already told them about. Having no ability to share the story is a harder element.
This was excellent, thank you for sharing this and an interesting way of storytelling
Great explanation, thank you
Glad it was helpful!
Wow! This is so insightful and helpful! I was 12 when I was diagnosed with lupus and so trying to process all the changes at that time was too overwhelming. For me, I've found that reinvention of self has allowed me to finally start grieving my past and move forward with creating a new story. Thank you! #chronicillness #lupus #invisibleillness #spoonie
Mereani, I’m so pleased you found this to be helpful. I’m sorry to hear you have been living with lupus since you were so young. It must have been very difficult. But it sounds like you have learned some of these lessons for yourself. I’d be grateful if you would consider sharing this with other folks who might also benefit.
Loved this, it has helped me so much…thankyou 👏🏼☺️🌻
You're so welcome!
i wasnt ready for being called humpty dumpty just for all the following words to make me sob lmao
After my first diagnosis I found my life story was no longer about a character that I was interested in writing. I no longer would be interested as an audience if the story took that turn. But I had to keep living or at least I didn't want to die yet.
So in my research into philosophy, I went in search of the purpose of life. And the center of my story started to change from the self and my desired vision of life to my relationship to a possible Author of life itself and the search for the objective vision or meaning of life.
At first I thought it was Nature, and as long as it seemed to fit the bill of being greater than me, ultimately explaining things, this was sufficient. But there were all kinds of problems with cynic and stoic and neoplatonic conceptions, since it still put me in the center alone. (Same with materialist evolutionism, which eventually seemed false on legitimate Platonic insights and as *not* science but metaphysical theory with data interpreted according to it.)
Theism solved this. There was no Other greater-than-self otherwise. Nature was just a tool or extension of myself if I understood it and there was no mystery in principle either this way. Everything was in principle understandable. This meant the human self was the cosmic center. There was no objective meaning to life otherwise only esoterica, arts and myths based on an unjustified axiom of there being only an impersonal Thing at bottom. I finally got this after I contracted my second chronic illness. Theism was the only answer that solved the problem. Idk much about Buber but an "I-Thou" is supposed to become center and I'm still working on that, making it the practical not just theoretical, narrative center.
So non-/anti-religious people strike me as wanting sufferers to not find this answer, to stay in a self centered narrative structure where their self can, by turns of fate or chance, become irretrievable and so for one to find it rational to kill oneself. That self-centered, suicide-permitting narrative structure largely influenced my eventually contracting my second chronic illness. This narrative structure explains the atheist agnostic promotion of euthanasia. I find this terribly dark and there will be much darker days ahead as they have their way. They will join with the spiritual not religious people eventually. But their offer of freedom destroys the essence of real religion because it puts the self back in the center.
Very interesting. Thanks for describing your experience for us. The eastern wisdom traditions (eg, Buddhism, Taoism, and Zen especially) emphasize that the self is the center of striving, and root of all suffering. The goal of meditation and the Dharma is to teach people how to escape from the tyranny of the separate self. So if you agree that the separate self is the core problem, then I don’t think theism is the only philosophical or theological principle that makes that point.
I was about to delete this for being too long (and ironically self-centered and preachy) but wow thanks for reading and responding.
I'll remember this Corbin Strauss trajectory model of chronic illness.
I was looking into Daoism and I still like Laozi but his work seems more like poetry and to function as a Rorschach test for a deeper more determinate and analytically clear interpretation of life. Some people can function seemingly without the left brain but it seems like a handicap. Most if not all of the determinate things that are in the Daodejing I still agree with and I have my readings of it on my channel.
Buddhism and especially Zen appear to me to be "hacks" or finding "glitches" in the matrix, this kind of view. But I don't agree with being in any of those panentheist deist polytheist or again naturalist backgrounds as our situation that needs hacking. The hack is they want identity death full stop. I still wanted to live with a self. So full dissolution like this didn't seem viable. Furthermore the ego always comes back as the infinitely regressing background to any previous ego death. Their teachers (I'm most familiar with Alan Watts) say this. This makes sense in Zen where they deny classical logic. The self is negated and affirmed simultaneously and that's supposedly fine to destroy our minds like this too. So they strike me as deeper forms of self-harm. But I agree that they also offer solutions.
@@joshua_finch oh this was very interesting to read! Thank you for writing all this!