Such an important conversation Madeleine. I loved the description of Wise Hope. Whether living with chronic illness, in recovery from an ED, being in the aftermath of the loss of a loved one or living through tumultuous times, it feels like holding hope *and* still being with the present experience is a human dilemma, as well as an ongoing spiritual practice.
I had great hope every day at the beginning, and that pushed me to do loads of research etc, and then I began to lose that great hope once I saw how little was accepted, how badly we were treated, etc. Now I don’t have large hopes, I don’t actively seek news of a cure, I only have small hopes that might actually happen - like having a better day. Acceptance that the big hopes were untenable has helped me. I’m not living in that hyper vigilant hopeful state any more.
Thank you for this important and beautifully written meditation. I’m reminded of the Stockdale Paradox, which I heard Jim Collins talk about on Brene Brown’s podcast: “You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” (A quick run down is https://bigthink.com/health/stockdale-paradox-confronting-reality-vital-success/ though I highly recommend Brene Brown’s podcast episode if you have attention enough.) Basically the POWs who had specific hopes - this Easter, this Christmas, etc) eventually died of broken hearts from the repeated crushing of their hopes.
I know, we are all so different. I have troubles with audiobooks, so I skim-read instead. I’ve gotten good at it over the years, but I still miss a lot of great details, and I can only do it for a short time. I know a lot of people whose brains don’t do well with reading but who can handle audiobooks and podcasts etc.
Great piece, it really resonates. Since this flare up my relationship with hope has changed, at moderate ME I was at acceptance of living at an ok (ish) level, with occasional surges of hope and trying new things, now I'm experiencing worse for the last year things are changing. I don't have much hope of a cure any time soon, my hope has changed to getting back to where I was but I do feel like I'm sinking at the moment. Wise and quiet hope is my aim. X
I’m addicted to your posts this morning! I have been sat with hope for years! For the reason, that it felt like, at one time, all I had was hope. I’ve been wondering at the connection to this and the wellness I now experience (90% of the time and continuing to improve - something I am still told is impossible). I’m writing a memoir of my journey and I’ve been wondering if you are writing a book too? In doing so, it’s taken me back to where I began (painful. Enormously triggering. Nearly gave up writing the book. Well I did, for a year). But what I’ve uncovered (through reading journals i kept) is I started out with a belief. A new found belief that “I matter. My health matters” (hence my special interest in the beliefs we hold about illness, wellness, health & healing). Very recently it’s come to me that “hope is a healing path” however, I’ve yet to understand or integrate what this means. I simply have no thoughts and am unable to compute what it means or the link this will have to my understanding of the part that hope plays in our journey. Trusting that it’ll unfold in time. But for now it doesn’t even make sense to me yet. I only know I had it. And that it came as a “hope that I might, just might get better”. No attachment to outcome, more of a glimmer of hope as to what might be. Whereas without it, I knew there was no hope - no chance of getting better. (Hoping I make sense here)
Yes! I’m writing a book too but at the moment I have too much brain fog to continue. So I *hope* my brain will wake up more soon. Am loving your comments!
Yes yes yes yes yes !!!! I am so excited to read it !!! The book writing will all unfold naturally in its own good time. Baby steps are all that’s required of us. Baby steps are all I’ve ever been able to take on the path and it’s the teeniest and tiniest of steps that’s paid off in the long run and added up to the bigger stuff (eventually).
Such an important conversation Madeleine. I loved the description of Wise Hope. Whether living with chronic illness, in recovery from an ED, being in the aftermath of the loss of a loved one or living through tumultuous times, it feels like holding hope *and* still being with the present experience is a human dilemma, as well as an ongoing spiritual practice.
At least for me.
Thank you! And yes, it’s definitely an ongoing (and complex) spiritual practice for me, too.
I had great hope every day at the beginning, and that pushed me to do loads of research etc, and then I began to lose that great hope once I saw how little was accepted, how badly we were treated, etc. Now I don’t have large hopes, I don’t actively seek news of a cure, I only have small hopes that might actually happen - like having a better day. Acceptance that the big hopes were untenable has helped me. I’m not living in that hyper vigilant hopeful state any more.
I so hear you… we can call it quiet hope.
A much more positive monicker
Thank you for this important and beautifully written meditation. I’m reminded of the Stockdale Paradox, which I heard Jim Collins talk about on Brene Brown’s podcast: “You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” (A quick run down is https://bigthink.com/health/stockdale-paradox-confronting-reality-vital-success/ though I highly recommend Brene Brown’s podcast episode if you have attention enough.) Basically the POWs who had specific hopes - this Easter, this Christmas, etc) eventually died of broken hearts from the repeated crushing of their hopes.
Wow this is so interesting, thank you Michelle. I’ll definitely try and check it out if my brain allows. Thanks for the inspiration!
I realise its not a given. ❤️🩹 I do most of my reading by audiobook to save my eyes and thank my lucky stars listening usually works ok for me.
I know, we are all so different. I have troubles with audiobooks, so I skim-read instead. I’ve gotten good at it over the years, but I still miss a lot of great details, and I can only do it for a short time. I know a lot of people whose brains don’t do well with reading but who can handle audiobooks and podcasts etc.
Between us we have one really great brain left, lol?
Haha sooo true 😅
I like the idea of wise hope. Recently wrote about hope
https://mirandavandenheuvel.substack.com/p/why-i-dont-believe-in-hope-anymore
Great piece, it really resonates. Since this flare up my relationship with hope has changed, at moderate ME I was at acceptance of living at an ok (ish) level, with occasional surges of hope and trying new things, now I'm experiencing worse for the last year things are changing. I don't have much hope of a cure any time soon, my hope has changed to getting back to where I was but I do feel like I'm sinking at the moment. Wise and quiet hope is my aim. X
Yes, quiet hope! I too hope to get to a more moderate/mild stage… the hope of a cure is just… wild right now, so I don’t go there.
I’m addicted to your posts this morning! I have been sat with hope for years! For the reason, that it felt like, at one time, all I had was hope. I’ve been wondering at the connection to this and the wellness I now experience (90% of the time and continuing to improve - something I am still told is impossible). I’m writing a memoir of my journey and I’ve been wondering if you are writing a book too? In doing so, it’s taken me back to where I began (painful. Enormously triggering. Nearly gave up writing the book. Well I did, for a year). But what I’ve uncovered (through reading journals i kept) is I started out with a belief. A new found belief that “I matter. My health matters” (hence my special interest in the beliefs we hold about illness, wellness, health & healing). Very recently it’s come to me that “hope is a healing path” however, I’ve yet to understand or integrate what this means. I simply have no thoughts and am unable to compute what it means or the link this will have to my understanding of the part that hope plays in our journey. Trusting that it’ll unfold in time. But for now it doesn’t even make sense to me yet. I only know I had it. And that it came as a “hope that I might, just might get better”. No attachment to outcome, more of a glimmer of hope as to what might be. Whereas without it, I knew there was no hope - no chance of getting better. (Hoping I make sense here)
Yes! I’m writing a book too but at the moment I have too much brain fog to continue. So I *hope* my brain will wake up more soon. Am loving your comments!
Yes yes yes yes yes !!!! I am so excited to read it !!! The book writing will all unfold naturally in its own good time. Baby steps are all that’s required of us. Baby steps are all I’ve ever been able to take on the path and it’s the teeniest and tiniest of steps that’s paid off in the long run and added up to the bigger stuff (eventually).