Anita Rao
I was a year out of college when I had my first up close experience with a dying person. My best friend's mom was in at-home hospice care, and I flew back to my hometown to spend time with the two of them.
We recorded a legacy conversation. I sat holding a microphone while Lauren told us about her favorite memories of raising Georgia, and Georgia shared her fears about life once her mom was gone.
[Archival audio of Lauren]
Well, I remember you being born so well, like it was yesterday, and then they gave you to me, and we didn't know if you were a boy or girl, and I was extremely happy to have a girl.
Anita Rao
The intensity of the moment was almost too much to process. Lauren's weakening voice, and my own sadness knowing I'd never share a room with the two of them again.
Over the course of that weekend, I watched a hospice nurse come and go, noting her ease. And I learned from Georgia that this nurse was extra special to them because of her care, but also her philosophy — that the dying process is to be revered, and that she could help people transition from one state to the other with the care and attention of a midwife. I'd never heard death talked about this way before — as a transition. And one that, just like birth, could be made easier with support.
This is Embodied. I'm Anita Rao.
Nothing about dying is easy, but as I learned then, that doesn't mean it has to be riddled with suffering. Acknowledging pain while minimizing suffering is the work of death doulas: folks who support the physical, spiritual and emotional needs of those who are dying. You've probably heard the term doula from your birthing friends. Death doulas support folks on the other side of the lifecycle, with end-of-life conversations and preparing for the dying process.
Vivette Jeffries-Logan
There are things that we're required to do alone, but we're never isolated.
Anita Rao
Vivette Jeffries-Logan is a Citizen of the Occaneechi Band of the Saponi Nation, and a person who holds healing space for those processing death and dying. She didn't set out to be a death doula. It was something she says she was called to do.
Vivette Jeffries-Logan
It was 2009 the first time I actually led a traveling ceremony for one of our tribal members [who] was actually six months old, and it was very unexpected. One minute, he was out with his parents in the stroller. And then next minute, they looked down, and he was gone.
And I reached out and let them know what I was called to do. And so I stepped into it. With the support of my teachers — calling them, listening to them. Even though I was terrified and didn't think that I knew what I was doing or could even hold that ceremony. And in that ceremony, several of our tribal citizens as well as relatives, came — ones that I didn't expect to come. And we let them know. We stood in their stead as we did ceremony on our tribal ground.
Anita Rao
What did holding that ceremony look like for the first time? You said you learned from folks about how to do this work. What did they teach you?
Vivette Jeffries-Logan
I sat at the feet of my teachers for eight and a half years before I held any ceremony. And there are things that I'm required to do at the beginning, at the end, the bookends, but trusting that I will have the medicine to lead what's in the middle. And so I still reach out to some of them whenever I have to do ceremonies, so it is about learning and trusting. And a lot of prayer goes in before I even step inside the ceremony for guidance from the ancestors.
Anita Rao
So you've worked with a variety of folks since that first experience that you had, could you talk to me a little bit about just the process that you go through? How do you approach working with an individual once you're called to work with them? What do you think about in terms of initial conversations and establishing that relationship to understand what they need?
Vivette Jeffries-Logan
So most of my work is with people who I have pre-existing relationships with — deep relationships. And so it's an easy conversation. It's asking questions about how they feel. And when I work with people, I hold space for maybe the person who is dying or transitioning. And sometimes it is with the family. And it is about conversations, and nothing is forbidden. It's about: We're going to talk about things that may not seem appropriate, but it is what needs to be talked about, because if we don't talk about it, it's going to impact the energy in the room. And so they are just conversations.
Anita Rao
What's an example of that?
Vivette Jeffries-Logan
I'll talk about like, Cynthia Brown, who we — I was one of six women to hold space for Cynthia, but Cynthia was an organized person. And she had everything laid out. She wrote her obituary. She wrote her program. She wrote everything. And so it was — she was full of laughter. She faced her death bravely, right. And we knew — each one of us knew exactly what we were supposed to do and what she expected. And so it is about what people want — what they envision, what they feel, what they're leaving behind, what they may not have thought about. It's all of that to be able to hold that space for the person that is transitioning, but also to hold space for the myriad of emotions that come up from family and loved ones.
Anita Rao
Cynthia Brown was a community activist who died in 2016. She was known for her decades of work with vulnerable communities around North Carolina.
Angela Zimmer is a death doula who came to this work more recently. She went through a training program in 2019 called Going With Grace, but being close to death isn't new for her.
Angela Zimmer
My dad died from complications of diabetes when I was 11. And I think, I don't believe I would be a death doula today if it weren't for that experience. He'd been sick for a really long time, and he died over Christmas break. And then when Christmas break was over, we just went back to school. Like it wasn't, you know, my whole world had collapsed and changed, but it was business as usual.
And nobody acknowledged that, you know, and it wasn't something I really could think of at the time, but as I've matured and gotten older and have my own children now it's like: Oh, my gosh, like, where was the support? Like, how much different would it have looked if I would have had support or even acknowledgement that this thing happened? You know, like, none of my teachers talked about it.
I remember very distinctly one kid, one guy asked me: I heard someone in your family died over the break. And that was it. Like there was no other kind of talk about that. I really think that with more support, it wouldn't have had to been so lonely. I felt, you know, so lonely about it. And I think that, because of that, I feel like it can be better for people. And that's why I wanted to come into this work. I wanted to be able to support people in a different way and give them the things that I didn't have.
Anita Rao
As you as you went through your training process, were there any reframes about death or dying that were healing for you? Any ways that you could reframe thinking about the process or thinking about your orientation to it?
Angela Zimmer
Oh, man, it was so eye opening. Not so much about like, even death, but different lived experiences of different people from different backgrounds and different races and different genders and different levels of ability. And just having such a diverse group in all ways talking about all of these things all the time. Just really kind of raises your awareness of what's important for other people, because so much of the training is how do you feel about this, you know, like, you have to plan your own funeral. You have to write your own obituary, you know. You have to consider these things, and you have to consider your own death.
Anita Rao
Considering, acknowledging and then breaking through the discomfort around death is one of the many skills of a death doula, and each individual approaches their work a little differently. Three other women in the field shared snippets of their philosophies with us.
Omisade Burney-Scott
Whatever transition a person might find themselves in, whether that's a person being born or a person making their transition and dying, everyone deserves support. They deserve care. They deserve emotional, mental spiritual support — and that is in alignment with the way that I want to show up in the world. And so this is a role that I have found myself in that I lean into to be supportive.
Lupe Tejada Diaz
For our communities of color and different ethnic backgrounds, they have unique needs when it comes to death care. The modern Western funeral as we understand it today is really quite unique, and [in] other parts of the world it's not seen at all. Ritual, and at times, quite ancient traditions dictate the passage of life and other big events. And it's my responsibility to make sure that my clients have the ability to observe their traditions and advocate for them if their needs aren't being met.
Lashanna Williams
The most meaningful part of this work is making sure that people have access to care in the community in which I live. That means physical care, emotional support, financial support, and in this country to have access to that information, there's lots of steps. You have to be able to understand the language that it's written in. If it's on the internet, you need access to the internet — so many things, so the most meaningful part of this work is busting the gates.
Anita Rao
That's Lashanna Williams. Before that you heard from Omisade Burney-Scott and Lupe Tejada Diaz.
Death doulas can help you with the practical: the advanced directives; the uncomfortable conversations with family; the setting boundaries about what you do or don't want when it comes to medical intervention. But at the heart of this work is also working through the intangible things, like fear.
Angela Zimmer
I think a lot of people that I speak with about this are my age, you know. I'm in my early 40s, I've got a couple of kids, and so my community is kind of full of people like me, and one of the biggest fears I know that we have, you know, is leaving our kids behind. And that's just really hard to deal with, I think, because, you know, we want to as parents — I love my kids, you know, I want to be there for them. That's the thing that breaks my heart when I think about it.
Some other common fears, you know, are pain. And then because we don't know what the process of death looks like, because we don't see it, the things that happen at the end of life: when our body starts to shut down; when our loved ones stop eating; when the breathing changes, all of those things can be really scary for people because they're so unexpected. And I think a really good way to help kind of quiet those fears or put those fears at ease is just to educate people, you know, like to let people know: Hey, this is what's going to happen next. This is the natural progression of this disease, or this is the natural progression of the body as it shuts down as people die. This is what you can expect to see.
Anita Rao
Could you tell me a bit about that? Because I do think that one of the things that that is really unexpected for a lot of folks is physically what the things that the body starts to do when it is in the process of shutting down.
Angela Zimmer
Right. Well, food is so important to us, right? Like we're supposed to eat, and we're supposed to take care of ourselves. And a lot of us show our love through food. And so one thing that happens is that when people are dying, they don't really need food anymore. And it's really hard to watch your loved one not eat, you know — you think, oh my gosh, I have to get some food into them. They need to eat. They're gonna starve. When in fact, they just don't need food anymore. That's not a requirement for their body. Their body's done with that. We don't need food anymore, you know. Maybe a little bit of something here and there, and only if they want it. And I know that's really hard for people to deal with.
And then another thing that's really hard can be, you know, you may have heard the term death rattle and just how breathing can change, and how people can take these deep gasping breaths and then maybe go silent for a little while and then start breathing again. So breathing kind of becomes irregular and unexpected. And you can never tell like: Oh, was that it? Is that the last one? And that can be really hard to be around.
Anita Rao
How do you support the physical body of the person as they're moving through this transition? These laboring breaths; this energy kind of surging and releasing. What are some of the things you do to take care of the physical body of the person who's dying?
Vivette Jeffries-Logan
So one of the things that I do is I touch them, right. I touch them, because again, it's to let them know that they're not alone. Because when they're in that liminal space, they're not aware, right, they just, they're not — and especially the bottom of the feet, to rub the bottom of the feet. And for that, what that does is breaking the earthly connection, but just to let them know that it's okay to go. And you're not alone. That I'm not afraid or repulsed of the body, right, of someone who is transitioning, I'm not afraid of that.
Anita Rao
As you have sat with thinking about your own mortality, I'd love to know, kind of any reflections or thoughts you have about what you'll want help with, or any wishes or desires that you're kind of in the process of articulating because you have done this work, and you've sat with this close proximity to death.
Vivette Jeffries-Logan
I've been thinking about that since mid-1997. And I say mid-1997, because I think around May 1997 death was in the room with me. She was in the room. I was pregnant with my first son, and his father put a gun to my head, and it misfired. And I told Creator, I said: If you let me survive, I won't come back, which I didn't. My son is now 24 years old, and so from once I came back to ground from that — yes, I have been thinking about what I want. And I talked to my husband. And I talked to both my sons about what I want. I'm very clear. I'm not afraid of death. Because as I said, she was in the room with me. I respect death, but I'm not afraid of it, and I don't hide from it.
Anita Rao
Death being in the room with you, or in a room near you, used to be much more common. If you'd been born a few centuries ago, you'd most likely have passed away in your own house, surrounded by people who knew and took care of you. Some communities in the country have stayed closer to those traditions than others. And the burgeoning death positivity movement is trying to bring more folks into the public conversation about how we die and what we can do now to prepare for that process. Sara Jenkins is an editor and writer living in Western North Carolina. She's 79, and in the past few years, she's gotten a lot of clarity about what she wants at the end of her life.
Sara Jenkins
There comes a time when your body is wearing out, and it's good to just let go then.
Anita Rao
Sara has been reading books and articles, and about a year ago decided to write a letter to her friends. She called it a "happy endings" letter.
Sara Jenkins
I was very influenced by my father. His own father had a stroke and lived for 12 years paralyzed, and my father just did not want to have that happen to him. So he wrote his own living will, stating that he did not want his life prolonged by artificial means. So we grew up with that idea that there's nothing to be gained by living on indefinitely in misery. So last year, I decided to tell my friends the things that had influenced me in this life, and that I wanted to go into it intentionally, consciously, and celebrate it.
Anita Rao
Eventually, all that thinking led her to seek out the support of a death doula. She reached out to a woman named Dr. Aditi Sethi-Brown. Aditi is a hospice physician, end-of-life doula and co-founder of the Center for Conscious Living and Dying. She's also a musician.
Dr. Aditi Sethi-Brown
Sara and I have developed a relationship organically. There's no checklists. There's no agenda when I go visit with her. It's really just a matter of exploring what's coming up for her as she's experiencing physical symptoms and reflecting on her life and preparing for her future death. Really, it's rare to find someone who's so proactive, because most often people I've taken care of, it's been a time of reactivity, or there's a crisis, or they're diagnosed with a terminal diagnosis and preparing for that active dying process and after-death care.
So with Sara, it's been really wonderful to reflect on her life and see how her life and living will impact her dying process and sort of get real about what does it look like, you know, where she lives in her home. She seeks community, so how can we create that for her? And as she shares stories and intentions, my work is to sort of help crystallize and materialize those possibilities and make them reality.
Anita Rao
Sara, I'd love to know about some of the specifics — some specific hopes and desires for the rest of your life that you have asked for help with through this relationship?
Sara Jenkins
Well, one is — I think you mentioned — being with more people, with community, and of course a big factor in that is the pandemic. But it's also true among peers my age. People are so isolated and really need each other and are beginning to feel that and sort of wish we thought about it a long time ago. But a main thing that Aditi helps me with now is just that she is aware of these options and has a very positive view of this as I do, like how can we celebrate this stage of life?
And I really hadn't thought about a lot of specifics until I saw a video made of her mother-in-law's dying process in Aditi's own home, with her young children around — many friends and family members, lots of music. It is really beautiful. And it goes all the way to the end — to Paula's body being lowered into the ground at a green burial place where I already have my burial plot as well. So there are many specifics that I saw in that video that I began to think about for the first time. But the main thing for me right now is: Is there someone available who can listen to me and reflect back to me maybe things that I will see a different way. I don't really know the answers to a lot of this, but just to have someone there who is focused on this with me, is the most important to me right now.
Anita Rao
I love that — the idea of wanting yourself reflected back to yourself. And I think that's something that that we can all relate to. I mean, Aditi, when you listen to Sara say these things, how do you help think about how to manifest these realities and reflect what she wants, and make that into a reality?
Dr. Aditi Sethi-Brown
So with Sara, I hear some of her life experience in community living — in co-housing communities, meditating individually and with groups — and, you know, I really sort of try to find themes and values that I can connect and feel into and see that are still valuable for her and a value to her. So, for example, in this path forward, we're looking at communities — what are some options to get her surrounded to have her supported and surrounded by community? And I looked at co-housing developments. I've looked at different models of care. And I'm not finding much that resonates or that fits. And so I'm thinking about creating something. And that's sort of how I've approached it — looking and seeing what exists, seeing how we can get more creative, to create alternatives for people that are seeking alternatives to the models that are there. So that's an example.
Anita Rao
And I mean, it's an interesting time to be thinking about living in community and noticing the desire to be in community because as we're so isolated, especially isolated now. So I mean, Sara, I'm curious about the juxtaposition of that — you've been looking head on at your own mortality while there's this heightened public conversation about illness and dying. I'd love to know about how the pandemic and bearing witness to this large scale community grief has shaped your own process of thinking about death and dying?
Sara Jenkins
You know, I was thinking about it and reading about it long before the pandemic, partly because my parents were so open about it. They put everything in place in terms of their own end of life, which was just a great gift. So my brother and I didn't have any of these awful decisions that some families have, so it hasn't changed a lot. I think the main thing is feeling that as isolated as I may feel at times, the awareness that so many other people have encountered death, or [are] facing death, or thinking about it, or experiencing grief — so in another sense, I feel companions all around the world.
Anita Rao
Aditi, being exposed to death early in life and exposed to people who think about it and talk about it openly seems like it has a really profound effect on folks. I know that you started volunteering in hospice when you were 17, so I'm curious about how those experiences being close to death as a teenager have shaped how you think about the death and dying process, and maybe how you talk to your own kids about it?
Dr. Aditi Sethi-Brown
Yeah, I think the acknowledgement that we're simply passing through, and we're in these human bodies, and we're here for a short time, deeply impacts how I live my life. And knowing that life is transient, and that in any moment, I'm not guaranteed tomorrow. So how does that impact the decisions I make, and how I choose to live my life in the moment and the now? And it's certainly been a gift and a blessing to have direct experiences with death on a regular basis to help remind me, because it really is a practice. And it's something you can cultivate, even if you're not doing death work. You know, just an awareness of death can really impact how you relate to your family members; how you relate to others; how you relate to yourself.
Anita Rao
I'd love to follow up on that and hear from you, Sara, about any specifics that you have learned through this process — or advice you'd give to others who want to prepare more for the end of their life or who want to start kind of acknowledging this more openly, but aren't sure how, or where to start — what have you learned from your own process?
Sara Jenkins
Well, you know, a really wonderful thing that just came to me in the last year was I read through — because I'm not well, and I'm not active, I can't go out and do stuff the way I used to — so I do stuff around here. And the most satisfying thing I did was to read through all the journals I had kept for many, many decades. And what a wonderful life I've had, you know, and when I found passages about people that I thought they would enjoy, I copy them out and send them to them — even people that I, you know, hadn't been in touch with in a long time.
And then that kind of spurred me to reconnect with people that were important to me and to tell people how much I enjoyed them, right. And to share our past, especially with people who are as old as I am — it's kind of all we've got left. It's very meaningful. And part of the work I did was — I did a lot of oral history interviewing with older people back when I was pretty young, and [I] was aware in the medical literature of the importance of what's called life review for older people — to look back on your life and reflect on it. Just having a sort of [a] larger, clearer picture of my life — sort of seeing pieces come back like puzzle pieces that just make it into a complete picture. That is very, very meaningful and gratifying to me.
Anita Rao
Sara and Aditi are working together in Western North Carolina. Aditi co-founded the community organization the Center for Conscious Living and Dying and hopes to one day build a residential center for those at the end of their life who want to die in community with others.
Embodied is a production of North Carolina Public Radio WUNC, a listener-supported station. If you want to lend your support to this podcast and WUNC's other shows on demand, consider a contribution at WUNC.org. now. Incredible storytelling like you hear on Embodied is only possible because of listeners like you.
Kaia Findlay produced this show with help from Amanda Magnus. Jenni Lawson is our sound engineer and Quilla wrote our theme music.
We're so thrilled to be back in your podcast feeds and remember that we want to hear your stories for our show. We ask you for your thoughts on topics every week via Instagram and Twitter. Follow us at EmbodiedWUNC. I'm Anita Rao, on an exploration of our brains, our bodies and taking on the taboo with you.