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Rewriting Your Story About Death with Kristi Nelson

Gratefulness expert Kristi Nelson describes how facing death at a young age transformed how she faces life. For Kristi, being grateful isn’t a sustained state of being. It’s an everyday practice to befriend impermanence and live in the moment. While undergoing cancer treatment in her 30s, she also had to rewrite the death narrative in her family to accept that death isn’t always a failure of will.


Transcript:

Sarah Cavanaugh:

Hi, I'm Sarah Cavanaugh, and this is Peaceful Exit. Every episode we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible, impossible to explain, and they translate it into words on a page.

Today we're talking with my dear friend Kristi Nelson, who has been sharing her wisdom with Peaceful Exit for many years. She's a longtime stage 4 cancer survivor, and she's the author of Wake Up Grateful, the Transformative Practice of Taking Nothing for Granted.

How are you today?

Kristi Nelson:

I'm good.

Sarah Cavanaugh:

This is such a timely and beautiful book. Wake Up Grateful. The title alone radiates hope and positivity. What inspired you to write it?

Kristi Nelson:

In the most basic sense because I think these conversations matter more than almost anything else.

Sarah Cavanaugh:

Agreed.

Kristi Nelson:

The opportunity to have these kinds of conversations and to catalyze a sense of both kind of urgency in people and possibility, and that we actually can live gratefully.

Sarah Cavanaugh:

Yes, daily gratitude is so powerful, and I know it's helped you get through some extremely difficult times. You're a cancer survivor, and when you were first diagnosed, you were suddenly having to sort through your feelings around death and loss and realizing most of your thoughts and views weren't really your own, but heavily influenced by your parents.

Kristi Nelson:

Both my mother and my father had a lot of trauma around death and a lot of associations around death that made it super hard for them. And then I was diagnosed in my early thirties with stage 4 cancer, and that didn't just offer me the opportunity, it forced me into the opportunity to address those narratives that I had unconsciously internalized.

And I would say I was not aware of what I had taken on that wasn't mine until I started to forge my own relationship, which was much more trying to befriend death because I had to face this prospect of my own mortality. And how I wanted to do that was in partnership with death and in partnership with life and really conscious and eyes wide open and to not deny in any way and to not feel that something of my life was being stolen from me. And I wanted to feel that my life had been enough, and that felt like a powerful thing.

Sarah Cavanaugh:

Cancer was a death sentence back then.

Kristi Nelson:

It really was.

Sarah Cavanaugh:

And it's not like today where we talk about it. Many cancers are no longer fatal.

Kristi Nelson:

Yes.

Sarah Cavanaugh:

There's so much treatment, but back then your stage 4 diagnosis must have overwhelmed you with thoughts of, "How am I going to survive this?"

Kristi Nelson:

When I was in my early thirties, there was this whole idea that cancer was a death sentence, but also if you had the right attitude, you could cure yourself. So there was a tyranny in both ways actually, because it was far enough along in cancer to have been influenced heavily by the new age movement. And your attitude is everything. And if you don't get your attitude right, you're doomed. And if you get it right, you're going to be saved.

Sarah Cavanaugh:

I remember that.

Kristi Nelson:

It was like, "Oh my God," I felt like I was walking on a tight rope. I know, because how do you do that when you're dealing with stage 4 cancer? How do you get your attitude just right? Because for me, there was so many feelings and I was scared I might die, and I was sad I might die, but then I felt like, "Oh God, if I'm sad, then I'm going to really ruin my chances of living and you don't-

Sarah Cavanaugh:

[inaudible 00:04:18] attitude.

Kristi Nelson:

If I'm scared, I'm just doomed. It's like if there's anything, so I'm trying... There's a lot around being ill. It's super hard and everybody has an idea about what you should do, and we're on the receiving end of so much love and care that feels like pressure. It feels like mandates. It feels like advice that's often unsolicited. There's so much that comes at us when we're really sick and it comes out of care, a lot of it. And I think also there's all that stuff about death is also woven in there. So it's not just, "Here's how you're going to stay alive, but here's what the prospect of your dying is bringing up for me." So then all of a sudden you're-

Sarah Cavanaugh:

Managing everybody else's feelings and-

Kristi Nelson:

Yes. And there's layers and layers. It's like you're being kind of layered on with all this stuff. And so it took a lot for me to sort my way through and including finding my way into a different kind of relationship to the prospect of dying.

Sarah Cavanaugh:

Different than your parents?

Kristi Nelson:

Different than my parents, different than the people around me. It was my own. And that felt super important. It was informed by reading, by praying, by meditating, by talking with people who I trusted, by becoming a student of the possibility of death and what that... And the reality of death, the truth of death, and how I could be in a different relationship with that than I was seeing around me. And that was an amazing thing to get to go through at 33.

Sarah Cavanaugh:

Pretty incredible. You mentioned having to manage other people's feelings around your diagnosis and the possibility of your dying. And I'm remembering that with my brother. I know that was particularly true of your father.

Kristi Nelson:

For my father, there was a pall over everything. It was as if I was already gone. His grief was so immense that there was no room for the fact that I was still alive, going through treatment and everything. It was like he was preparing himself for the possibility of my death. And so it felt like there were often times that it felt very morbid.

And I remember being in the car when we were coming back from chemotherapy in Boston. He was driving, and I said, "Dad, pull over the car. You have to pull over the car." It's like I was so frustrated. I was like, "I'm not dead yet. You can't write my eulogy. My death is not going to be your tragedy, please." So then what I feel as soon as I say that is, "I don't want to be a failure. I don't want my death to be a failure, please."

And I felt that from both of my parents, my death would be a failure. It would be a failure of my will. It would be a failure of loving life enough. There was a message that was so heavy in the space around me, which was the belief even that if you wanted to live enough, you would live and only people died of cancer who wanted to die. I mean, people literally said that to me. And I just felt like what a loaded experience to be so ill, and then to feel that I couldn't just face the prospect of dying with any degree of peace. It was so heavily laden with all of these associations and narratives that I was inheriting and absorbing.

And so it took very strong, loving boundary setting with the people around me. And I had to contain my space a lot of times. I had to push things away. I had to forge my own relationship with myself with something larger than myself in order to try to get my own rudder on my own boat. "Where am I going here and how do I feel about it and what's really true for me?" So that took a lot of carving away and redefining that what love meant for me often was loving people so much that I had to have boundaries around my own experience.

Sarah Cavanaugh:

It just took so much courage to do that. I remember my mother never did. She never set those boundaries, and she did end up transitioning from her stage 4 cancer. And I wonder how much in your experience, those boundary settings and that saying no to the tragic narrative that your dad had was what saved you. You were able to live into that courage.

Kristi Nelson:

I am still here after so many years, for I have no idea what reasons and why, honestly, because I'm not a person who makes those kinds of pronouncements. "I was saved because..." "I'm here because..." I think there's so much danger in that. And also people would ask me, "How did you do it?" As if there was a formula. And I have to always say, "There's really, I don't believe there's a formula. I don't believe that if you do this thing right or this thing wrong, you're either going to die or live." It was more like what I really learned was how to trust myself, how to develop an interior litmus test, an interior touchstone.

That was what developed in me in my early thirties that was so helpful, which was I could hold a possibility or advice or a feeling or someone else's counsel or a prognosis or an experience with a doctor. I could hold it against something inside myself and know whether it felt right or wrong for me. And I had to do a lot of saying to doctors and to family and friends and people at strangers, "That's not my truth. And I need to set a boundary here." That was such a powerful formative experience. Don't know anything about what it contributed to my lifespan after that, but it contributed to my quality of life after that in that being able to do that, and sometimes it's under tremendous strain and pressure that we develop those capacities, this was one. The cauldron of cancer taught me that.

Sarah Cavanaugh:

Beautifully said. Okay, we've talked about your dad and how he dealt with death, but your mom, she had a complicated relationship with death too.

Kristi Nelson:

My mother's mother got cancer. She had what they believe is kind of thymus originating Hodgkin's cancer when my mother was around eight. She was quite sick. My mom was the oldest. She had a younger brother, and their mom was very ill. And at the time, blood transfusions were the only treatment. And so she was living with this very sick mother who ended up succumbing to the cancer at 11, when she was aged 11. And I do believe that for my mom, her life got really hard with a new stepmom that was hard and a new half sibling that was hard. It's just things got very difficult for her growing up. And I think my mother really felt that her mother's death was a kind of abandonment of her like, that it felt, and how can it not feel that way on so many levels as a young, really young person? That it felt very abandoning.

And then when I was four, my sister was one, and my brother was three, my mother was diagnosed with her own thymus originating lymphoma, Hodgkins. So she was 24 years old. And when she was diagnosed with that, it took a tremendous, huge surgery. She did cobalt radiation treatments that were brand new. We had no money. So she had to take a bus from Eugene to Portland every single day to have these radiation treatments. And she lived. She survived that cancer. And one of the reasons why, part of her legacy is, "I didn't want to abandon you the way that I had been abandoned." So what was fascinating about that is then death became a failure of will.

So my mother lived right into this extraordinary, she lived 55 years longer, and yet her death to herself at 78 was a tragic disappointment. She just did not want to die. And no matter how much I could say, "Your life has been a miracle," it wasn't enough. It wasn't enough for her. So that's part of what I had to encounter was those experiences with my father and my mother, their relationships to the prospect of my dying.

They were so strong, so cemented by their own early growing up, and I was the exact same age that my mother's mother was when she died. And so when I was diagnosed again, third generation female lymphoma, I think for my mother, it was just a firestorm of terror and grief. And yet I didn't want to disappoint her, but I needed to be able to figure out how, if I was going to need to die, how I could do that without failing her, failing myself, failing life. How I could work with that. And that's been kind of a theme in my adult life.

Sarah Cavanaugh:

It's so interesting how everyone processes grief differently.

Kristi Nelson:

Every grief has its own flavor, its own expression. So every single grief being so different, and for each of us, both the stories that we've inherited in the losses that we suffer, shapes our experience, and they're incomparable on so many levels. There's so much that we share in common and that allows us to accompany one another. And yet the way we experience grief and express grief is so distinct and individual. And I think that's really rich terrain for us to explore.

Sarah Cavanaugh:

I love how you choose to step into that grief and face it head on.

Kristi Nelson:

The place where befriending death feels so vital and so life-giving to me. So enlivening, aliveness, creating. And for me that quality of aliveness relies on the acknowledgement of impermanence. It's just planted in it for me. And the more I deny my impermanence and my mortality, the less alive I feel. The more I embrace it, the more alive I feel. So there's this way in which I feel I'm interested in my own experience of walking through life in a way where I'm always really on some level preparing to go, and to be ready at any moment, knowing that we have no idea. Is it minutes? Is it hours? Is it days, months, years? We have no idea.

I love that it's the most unknown thing. And that embracing that place of absolute not knowingness and the power of that and saying, "I want to live [inaudible 00:16:22] ." And so it's like, "And is this enough?" "Yes, this is enough." And yet I don't want to die. I don't want to die. And yet befriending death brings me so much more fully alive so that I can hold that space of, "Perhaps this really is enough. I'm ready to go." And then continuing to live is so rich from that place. I don't know how to describe it exactly, but it's so profound and poignant for me where it lives inside of me.

Sarah Cavanaugh:

How do you befriend death on a daily basis?

Kristi Nelson:

I wake up every day and give thanks for another day. I do not take almost anything for granted, almost anyone for granted, almost any experience or moment or beauty for granted. That's my practice. And gratefulness is the practice of taking nothing for granted. Gratefulness for me is so clearly about, and I've started to actually use this language of remembering to take nothing for granted. That the practice is whatever helps us remember, it's not a new concept.

I think it's reclaiming taking nothing for granted, because I think we know that as a reference point there's states of aliveness, and when we're young in certain ways, and there's times in our lives when we are taking nothing for granted, and it's those peak awareness experiences, peak, peak experiences, that so many people these days, especially, I will say the whole psychedelic movement is based on creating the conditions of accessing peak awareness, peak experience, that really is taking nothing for granted. You have perspective and you see so much, and you feel so much, and those experiences are states of aliveness that for me also include the awareness of our mortality.

Sarah Cavanaugh:

What does a peaceful exit look like to you?

Kristi Nelson:

Oh, God, I've got so much to do. Yikes, the paperwork, but it's not there because I trust that all those things will tend to themselves in some ways or other people. I'm going to be leaving a lot of people things to do. But what I don't want to leave people with is unaddressed and unresolved relational things, whether they're difficult or whether they're beautiful and loving, or whether they're both, and they're usually both. It's like there's all of those things that want to be addressed in order for us to leave at peace. And that feels like the biggest invitation to me, is living my life that way. Not waiting, not waiting. And I'd love a good harp, and I'd love a good like, okay, some nice incense and candles and someone massaging my feet, and I'd love all those things, and I'd love to really be as much as possible, free from pain. Those are the kinds of things. So physically, we have people who will set those conditions up for us at the end of our lives, but we have to take responsibility for creating the internal peace that will let us-

Sarah Cavanaugh:

That's right.

Kristi Nelson:

Drop into that piece.

Sarah Cavanaugh:

That's right. I encourage you to articulate that. Articulate everything, including the harp and the foot rub and everything.

Kristi Nelson:

Yes, yes.

Sarah Cavanaugh:

Write it all down. Or record it or whatever.

Kristi Nelson:

And the music and everything.

Sarah Cavanaugh:

Everything.

Kristi Nelson:

And all of that feels very, it feels absolutely counter to how so much of my family and so much of death has been dealt with around me, is it's not just peaceful exit. It's also explicit.

Sarah Cavanaugh:

Explicit exit.

Kristi Nelson:

That is actually honest.

Sarah Cavanaugh:

That's a whole new title.

Kristi Nelson:

Right? Yeah. So thank you.

Sarah Cavanaugh:

Thank you. Thank you for your time today, and it was so good to talk to you and great to see you.

Thank you for listening to Peaceful Exit. You can learn more about this podcast and my online course at my website, peacefulexit.net. If you enjoyed this episode, please let us know. You can rate and review this show on Spotify and Apple Podcasts. This episode was produced by Large Media. You can find them at larjmedia.com. Special thanks to Ricardo Russell for the original music throughout this podcast. More of his music can be found on Bandcamp.

As always, thanks for listening. I'm Sarah Cavanaugh, and this is Peaceful Exit.



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