You’re not alone in this—there are some of us who also lived past what was supposed to be the ending, even hospice, and are still figuring out what comes after.
The way you described survivorship not resolving, but lingering and cycling… that’s exactly it.
Thank you for putting words to something most people don’t talk about.
I mean the lingering, and the cycling. I feel like we are sold an idea of clean endings and new beginnings, but my experience has always been that moving past something is rare. Moving through something and then learning how to carry that experience is more likely what we live with.
What a great piece. I think most of us are not asking the right questions. One of the biggest takeaways from when my mother was dying was that she just wanted to be witnessed. So many family members were trying to fix things and were getting so frustrated when they couldn't fix it. But she just wanted people to be with her, to witness, to experience her. Thank you for writing this.
I’m not sure we are on this planet, in these bodies, for much else than that. I’m so glad it spoke to you. Also that you were able to see your mom’s need in that time. Losing a loved one is never easy but those close to death have lessons for us. I hope you are well.
It’s not. I always appreciate how open we can talk about these things. They aren’t easy, but our relationship was born on unease. You were the first person I have dated that I felt like ever fully accepted me for the sickness and the health. I’m not sure I would have done the transplant without you in my life. Love you always
I feel the same as Mary does after reading this. Grateful I caught this before putting my phone away for bed and will read it again with fresh eyes in the morning.
Wow . I have so many thoughts swirling like autumn leaves in a breeze (it’s autumn here in the southern hemisphere). I was just told that if I don’t do something about my heart they’d expect me to have a heart attack. I have a 9 year old son and it’s added another layer to living life with health complexity . Yet, there’s this level of knowing that any of us could be ‘out’ at any moment, yet we live life with a false sense of certainty because perhaps it’s too much to realise we and life are crazily fragile? But what happens if we try and embrace the reality. Like you, for me it comes to presence . No performance, no striving, just being so fucking present to love . I dunno Cam, these are swirling thoughts that are moving their way through me. 😁❤️
Thank you for sharing. There are no “right” or “wrong” answers when facing this type of thing. As Rumi said “death comes my dawn and we laugh at what we though was our grief”
although we don't know each other super well, I am glad you're here (and recovering, at least physically) and thank you for being so open and vulnerable about your journey - the wisdom that overflows from this post shouldn't be lost on any of us. learning to be present & living 'IN' the moment is what we all need more of nowadays - and important to understand that grieving isn't only for those who we've lost physically - thank you for sharing!
Thank you 🙏. I do believe that finding ways to be more in the moment is the key to our salvation as well. It’s not an easy task, since as we know everything is designed to stop us from that. Hope to spend more time with you soon in the UK!
Cam, insofar as anyone can be 100% with anyone on anything, I'm there with you. This landscape I discovered after the transplant looks the same, but I've come home different. I'm nearly 5 years on and it's supposed to have failed, but I'm still somehow here with my health improved. Sometimes I feel disappointed. How weird is that? Sometimes I could look at a tree all afternoon and wonder how I missed them before. Sometimes I can't believe the gift I've been given. Sometimes I don't want to be grateful at all. In fact I feel guilty. But it's also beautiful. And I've got to watch my son grow up and wouldn't I have given ANYTHING for that? There's a burn to 'really live' whatever that is and a desire to just stop completely. And the world rolls on by and I'm supposed to somehow fit back into it. It's a lot. Glad to hear from you, though.
It’s not weird at all. I feel disappointed sometimes too. Somehow all of it has given life a deeper meaning and connected me more with a through line that runs much further than this body could ever take me to
So powerful... My journey through psychiatric drug injury and withdrawal (which is very much like chronic illness, and is in fact frequently misdiagnosed as such...) has at times had me wondering if I would survive. I'm pretty sure I will, at this point. But that doesn't mean I don't wonder what it's all for, the way my life was ripped out from under me with no going back.
Although our ailments are different, I can see the undertow is the same. The truth is there is never any going back for anyone, but for people like us, the difference is stark. We can’t look away. Our society treats it as a disadvantage, and it is. But we have to look at the advantages as well. We examine the parts of the human condition most people are too afraid to ever look at. There are gifts there. There is a depth we are afforded that others will never understand. I hope we can both continue to poke and prod at the uncomfortable truths of being in these silly meat sacks.
This really resonated.
You’re not alone in this—there are some of us who also lived past what was supposed to be the ending, even hospice, and are still figuring out what comes after.
The way you described survivorship not resolving, but lingering and cycling… that’s exactly it.
Thank you for putting words to something most people don’t talk about.
Thank you Mary. I’m not sure we ever truly move past anything in this life. If we are lucky we just learn to carry it with more grace.
Cam,
I am a bit confused by your reply to my comment?
I mean the lingering, and the cycling. I feel like we are sold an idea of clean endings and new beginnings, but my experience has always been that moving past something is rare. Moving through something and then learning how to carry that experience is more likely what we live with.
Yes Cam we do carry our experiences with us. For me time , frequency, and discernment help .
What a great piece. I think most of us are not asking the right questions. One of the biggest takeaways from when my mother was dying was that she just wanted to be witnessed. So many family members were trying to fix things and were getting so frustrated when they couldn't fix it. But she just wanted people to be with her, to witness, to experience her. Thank you for writing this.
I’m not sure we are on this planet, in these bodies, for much else than that. I’m so glad it spoke to you. Also that you were able to see your mom’s need in that time. Losing a loved one is never easy but those close to death have lessons for us. I hope you are well.
Made me cry, the usual. You know I'm glad you're still here, but it's never that simple when it comes to health and sickness and grief.
It’s not. I always appreciate how open we can talk about these things. They aren’t easy, but our relationship was born on unease. You were the first person I have dated that I felt like ever fully accepted me for the sickness and the health. I’m not sure I would have done the transplant without you in my life. Love you always
I feel the same as Mary does after reading this. Grateful I caught this before putting my phone away for bed and will read it again with fresh eyes in the morning.
Thank you Lee! I hope it brought reassuring dreams in your rest
Beautiful.
Thank you so much! It means the world to me
Wow . I have so many thoughts swirling like autumn leaves in a breeze (it’s autumn here in the southern hemisphere). I was just told that if I don’t do something about my heart they’d expect me to have a heart attack. I have a 9 year old son and it’s added another layer to living life with health complexity . Yet, there’s this level of knowing that any of us could be ‘out’ at any moment, yet we live life with a false sense of certainty because perhaps it’s too much to realise we and life are crazily fragile? But what happens if we try and embrace the reality. Like you, for me it comes to presence . No performance, no striving, just being so fucking present to love . I dunno Cam, these are swirling thoughts that are moving their way through me. 😁❤️
Thank you for sharing. There are no “right” or “wrong” answers when facing this type of thing. As Rumi said “death comes my dawn and we laugh at what we though was our grief”
although we don't know each other super well, I am glad you're here (and recovering, at least physically) and thank you for being so open and vulnerable about your journey - the wisdom that overflows from this post shouldn't be lost on any of us. learning to be present & living 'IN' the moment is what we all need more of nowadays - and important to understand that grieving isn't only for those who we've lost physically - thank you for sharing!
Thank you 🙏. I do believe that finding ways to be more in the moment is the key to our salvation as well. It’s not an easy task, since as we know everything is designed to stop us from that. Hope to spend more time with you soon in the UK!
Cam, insofar as anyone can be 100% with anyone on anything, I'm there with you. This landscape I discovered after the transplant looks the same, but I've come home different. I'm nearly 5 years on and it's supposed to have failed, but I'm still somehow here with my health improved. Sometimes I feel disappointed. How weird is that? Sometimes I could look at a tree all afternoon and wonder how I missed them before. Sometimes I can't believe the gift I've been given. Sometimes I don't want to be grateful at all. In fact I feel guilty. But it's also beautiful. And I've got to watch my son grow up and wouldn't I have given ANYTHING for that? There's a burn to 'really live' whatever that is and a desire to just stop completely. And the world rolls on by and I'm supposed to somehow fit back into it. It's a lot. Glad to hear from you, though.
It’s not weird at all. I feel disappointed sometimes too. Somehow all of it has given life a deeper meaning and connected me more with a through line that runs much further than this body could ever take me to
So powerful... My journey through psychiatric drug injury and withdrawal (which is very much like chronic illness, and is in fact frequently misdiagnosed as such...) has at times had me wondering if I would survive. I'm pretty sure I will, at this point. But that doesn't mean I don't wonder what it's all for, the way my life was ripped out from under me with no going back.
Glad you popped up in my feed today 💜💪
Although our ailments are different, I can see the undertow is the same. The truth is there is never any going back for anyone, but for people like us, the difference is stark. We can’t look away. Our society treats it as a disadvantage, and it is. But we have to look at the advantages as well. We examine the parts of the human condition most people are too afraid to ever look at. There are gifts there. There is a depth we are afforded that others will never understand. I hope we can both continue to poke and prod at the uncomfortable truths of being in these silly meat sacks.
Exactly - so beautifully said. There are gifts. I’m starting to understand this, finally, and I’m hoping the gifts will carry me forward…