This week on Live Like the World is Dying, Inmn is rejoined by Wōen and Roxanne from the Woven Ends Collective to talk about death, dying, and the work of death doulas.
Inmn can be found on Instagram @shadowtail.artificery.
This show is published by Strangers in A Tangled Wilderness. We can be found at www.tangledwilderness.org, or on Twitter @TangledWild and Instagram @Tangled_Wilderness. You can support the show on Patreon at www.patreon.com/strangersinatangledwilderness.
Live Like the World is Dying: Woven Ends on Death & Dying pt. II
Hello, and welcome to Live Like the World is Dying, your podcast for what feels like the end times. I’m your host today again Inmn Neruin and I use they/them pronouns. We’re back again this week to finish up our chat with Wōen and Roxy from the Woven Ends Collective to talk about death and dying. I’m not sure exactly where the episode got cut in half, but today we’re probably going to hear a lot more about caring for people who are dying and the work of a death doula. Like last week, we’re talking about some heavy stuff but in the spirit of building more resilient communities that can prepare for the end times together in all ways. And again, we hope that conversations like this can help shift how people talk about death and dying. And, we don’t want to bring this stuff up to either romanticize death or to incite fear of death. It’s just going to happen. And I know I would like for my circles to have all the resources that they need when I die. And oh please, god, don’t embalm me. I really, really, really want to rot. Does this count as a power of attorney? As we learned last week, no, it does not. Content warning again. At some point we talked about the idea of choosing to die from the perspective of being terminally ill. But before we go into it, we are a proud member of the Channel Zero Network of anarchist podcasts and here’s a jingle from another show on that network. Doo doo doo doo doo [Singing the words like a melody]
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In Molotov Now, we analyze and discuss news articles and stories of resistance from around the globe and connect them to our struggles here at home in Aberdeen, Washington.
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So what is kind of the pathway from like, say that I die tomorrow–I die in a hospital–like what is the pathway between like, I die in a hospital and my friends bury me in our home cemetery? Like, how does the possession of my remains work? Like, in Little Miss Sunshine, are people gonna have to pay to get my corpse? Like, can they get my corpse? Like, how does that work?
Yeah, so you don’t…you know, whoever is the designated person, so either the next of kin legally or the legally designated healthcare power of attorney who was also your power of attorney over your disposition, they will have the rights to your body, and you do not have to…If you die at a hospital, you’re not going to have to pay to have the body released to you. What normally happens is the hospital will give a family a list of funeral homes, and then from there you’d call the funeral home, then the funeral home will do all the transportation. And then, you often won’t even see that exchange from the hospital to the funeral home. You’d go to the funeral home and make arrangements and go from there. But, as the person with the rights, you can do all of that yourself. You can go pick them up and drive them to where they need to be. It’s–and this is where like educating around things like bodily care and home funerals is really important–because there are logistical things you need to think about with transportation and caring for the body at home. And so, it can be a little daunting to do on your own, but, you know, if there’s a lot of people supporting you, it’s actually not very hard. Like, the intimidation factor is the hardest part. And, you know, having a vehicle that can get you home and a space where you can do the burial, those are really the next parts. And we all kind of know inherently how to do these rituals. Like once you enter into that space, it’s really beautiful like how people just like fall into these different roles that they feel really confident in. And, yeah. So I would say, you know, if you’re not going on that normal mode from hospital to funeral home to cemetery, like having a lot of people involved to care for the process is…Yeah, it’s very doable and beautiful.
Cool. Will–this is a weird logistical question, but I feel like this is kind of, you know, what we’re here for–like, say, if I die, and I die in a hospital and like, say my family, chosen family, support network, which, you know, whoever it is, and we’re trying to do like a home burial and they’re not ready to, you know, take possession of my body, like will the hospital hold on to it for a little while? In like a refrigerator? Like, what if they’re not ready for it? What if they like…you know, obviously, I just died. Maybe they need a week to deal with it. But, they don’t want me embalmed and want to take possession of my remains.
I can’t say the exact timeline, I think it’s probably a different state by state, but there is a limit on how long a person can stay at a hospital morgue. So that’s a good thing to know where you are. But, another good thing to know is that often you can work with funeral homes to just do transportation or cold storage to give you time. And so I think that would be the best pathway is like, "Okay, we’re not ready. Let’s call a funeral home and just get them to pick our person up and put them in cold storage. And that will give us time to breathe and figure out what we need to do. And then from there, like you can ask them to, you know, transport them to where they need to go or you can pick them up from the funeral home. You can chip away at what the funeral home is offering. And some, you know, sometimes it’ll be met with a little resistance. But like, you can have people tasked with advocating, and having more people to negotiate with different parts of the process is really helpful.
Yeah, cool. That is good to know. So I feel like we keep going back to this power of attorney. If I get a medical power of attorney, does that extend to my remains? Like does who has my medical power of attorney also have the rights to the…to my disposition, or?
Yeah, the answer is yes. And, it’s important to get a good Advanced Directive. Some Advanced Directives don’t have a section for disposition and it’s important to get one that does. Because if it doesn’t, then that is a situation where there could be like…Yeah, where if it’s contested on who has rights, the advance directive could fall short. So, knowing that your Advanced Directive has that part, that section, in it is really important. Not all do and it sucks. So, figuring out that you have the right kind of Advanced Directive, and a lot of them do, but some of the popular ones–like the Five Wishes, which is really popular–it doesn’t have that section in there. You can write it in yourself. But, if you’re doing it and don’t have guidance and have never done it before, that part can be missed. And then yeah. And then you could lose that right if it gets contested or there’s a situation. Yeah.
It’s so weird that I think that this is like so–and maybe this is part of it is that in my head all of these decisions are these weird legal red tape or I’m like…I’m surprised to hear and, you know, grateful to hear that my friends could just get my body and do whatever…like, do what–not whatever they want with it…Like, hopefully do what I want them to do. [Everyone laughing] But, it’s dispelling this myth that I have died and the State owns me, that the State owns my body and the State determines what happens to it. Like, I had this question for y’all where I was like, "Okay, but how do I get my…like…How do I get the name that I go by, and that people know me in the world by, on my tombstone instead of my legal name?" And it’s like…it’s…because in my head the Social Security Administration is who sends the form to the stone carver to make that and I’m like, "Why do I have these these weird myths in my head about, like, who owns my body?"
I mean, because we live in…Like, when we’re, you know, quote unquote, "healthy," we’re dealing with that every day. Like people owning our time. You know, the Capitalist…Yeah, the Capitalist greed has infected all parts of our body. Yeah, it’s really easy to assume that it will affect us after death too. Yeah. And on your note about your stone, like a headstone, yeah, you can put whatever you want on it, honestly. Like, it’s up to you and the stone carver and the cemetery. There’s no law or regulation around that. It’s whoever has the rights of disposition.
Yeah, yeah. And I know, Wōen, that you have to go in a second, so I just have this one last question. And, you know, maybe this is more of a Roxy question or…I don’t know. So, I can have a home burial. Can I? Can I die at home? Are there complications to me–like legal complications for my friends–to like…Say, I’m having some kind of medical emergency, and my friends know in my power of attorney that I don’t want anything done, that there are interventions that are…like that I’ve like excluded, like CPR or anything, and I’m in a situation where I need CPR. If they watch me die, is that legally complicated for them?
No, actually. Well, I mean, it could be in the way that there would have to be a lot of proving different things. But it’s not illegal to die at home. It’s also not illegal to choose death. So maybe slight content warning, you know, it’s not illegal to choose to die. And, you don’t put other people at risk for any kind of weird legal things for being present when, for example, if someone chose to die and you were there, that’s not a legal issue.
Yeah, yeah. Just to, you know, be mindful that if there isn’t a doctor involved or, you know, ongoing palliative care, like hospice, it’s considered to be unexpected in a way. So, whenever, like, say you die at home, whoever finds you or that’s there, they need to call emergency services, EMS, and usually, you know, you can tell them to come quietly with their lights off, but they’ll need to come. And if there isn’t a clear, you know, reason or like you can’t, you know…Often the medical examiner, or always the medical examiner, will need to be there if there isn’t a doctor involved. And then that often means that police can be there too. So it’s, you know, if you have the choice to plan on that, just everyone involved, you know, in planning, like create a complete safety plan around that. Because, that will be the response that EMS will need to come and sometimes the police too.
And the situation really varies. Like in Washington State, I volunteer doing medical aid and dying support. So I go and sit with people who have a terminal diagnosis that have been given six or less months left to live and they ingest a medication that ends their life. So like in those situations, you know, doctors have signed off on it. People know. But, folks are absolutely dying at home. And, we have loose terms around what "home" is in that case. But yeah, and in those situations, for example, maybe a patient did have hospice, we’ll call hospice. Otherwise, you know, we’ll call the medical examiners or you like…You have to notify someone. But yeah, dying at home–and honestly, I know that this can also be like an issue of resources, and this could be a complicating statement–but I feel like if it is possible, and you feel safe to die at home, and the people that are in your home feel safe with you dying at home, that to me, that is a really ideal scenario and is a really comfortable and safe and nice place to no longer have to exist in.
Yeah, yeah. Do you have to go, Wōen?
I do. Thank you so much.
Yeah. If there’s any kind of last things that you want to say before you go or like anything you want to plug…But also, we didn’t really get into this as much and I would love to have you back on to talk about this, but would love to at some point have you back on to talk more about grief and like mourning. If that’s something that you want to talk about. Not now but at a later situation.
Totally. Yeah. Yeah. Yeah. Yeah, I think we both would have a really awesome perspective on that. Probably different. It’s all different. So. Yeah, that’d be sweet.
Yeah. Great. Great. Well, thanks so much for coming on.
Yeah, yeah. Hope you have a beautiful day and that it’s not too hot. See you.
So I wanted to kind of double back on this question that came up before and it’s…Yeah, I guess that it’s a little unrelated to this, but we keep going back to the medical power of attorney. I feel like this is like the golden point of the episode is get a power of attorney.
And does my hospital debt also pass on to my power of attorney or does that? How does hospital debt work? Like, if I die and there are unpaid hospital bills like what happens? Where does that go?
Yeah, that’s a great question. I don’t fully have the answer to that. It wouldn’t just go to someone because they’re your power of attorney. That would be more like the person who has control of your assets. So, yeah, in those scenarios, the person who has financial control would be the one that would then, you know, is supposed to settle up. But I, honestly, that’s not my powerhouse. So I’m not totally sure. Yeah. Yeah, I don’t have the answer to that. I’m so sorry. Oh,
No worries. You know, I’m here to…I love bringing up questions even if it, even if there’s no clear answers to them
I was thinking of the situation where, you know, I do love my family. I don’t think I want them controlling my remains, which is…I don’t think my family listens to the show. So, hopefully, they didn’t hear that. But, let’s say I, you know, if I, you know, if I hated my family, then, I’m imagining this situation where I’ve given my medical power of attorney and the rights to my disposition to, you know, my chosen family. And then…but, financially that my assets are still tied to my next of kin. So, I could give all the good parts to my friends and then shirk that debt off on my piece of shit family. Which, you know, that’s a hypothetical. I love my family. All my families.
Yeah, that’s a spicy…That’s a spicy suggestion/question. I like it.
Yeah. Or, I don’t know. It makes me think about like, I had a friend who–this was years and years ago–and I think we were all 22 or something, and they were like, "Oh, I have to go sign these weird documents today." And I was like, "Oh, why?" And they’re like, "Oh, my friend is making me the trustee for their life insurance policy." And I was like, "Oh, a 22 year old is getting a life insurance policy?" And they’re like, "Yeah, So, if this person accidentally dies, like, I will get a million dollars." And I was like, "Yeah, that is…Okay. Yeah. How do we,"–not how do we scam death because that’s not what’s going on–but like, I’m wondering, thinking about how do we set people up for if something does happen to us, that instead of inheriting debt, they’re getting money or something? I don’t know.
Definitely. And there are people thinking of that. And I think it’s so cool. And yeah, I think that that could be a really great way to resource a community also, you know? Being like, okay, death is inevitable. Some of us are going to die younger than others. As many of us as we possibly can, like, maybe we should be all throwing together and have kind of like a big mass life insurance thing pool where everyone…You know, to make sure everyone can get a policy. And within that you can, you know, ask that those funds go into whatever community project or, you know, or to people that, you know, that could really benefit from that resource. Yeah, I think that that’s really smart. And the cool thing, too, is, you know, obviously, depending on state and depending on the policy, it covers all different kinds of death, including chosen death. And that’s not always true. But, there are many cases in which that is true. You just have to have the policy for a certain amount of years or, you know, there’s circumstances in which that’s also the case, which I think is good to remember.
Yeah. Which it’s like, obviously, I would…I’m gonna put all of, as many resources as I can, into people in my community not dying. But…
But, we are, you know, like you said, we are all going to die and unfortunately we do live in a rapidly changing world, and a world that has always been, you know, very dangerous for queer people, for trans people, for people of color, for disabled people, for, you know, all of these different kinds of people. And I…It’s like, I never…I just never want…I never want to see a mutual aid or crowdfunding request for extreme funeral expenses, you know? And, because it’s like that…it’s obviously important to be able to mourn someone and celebrate someone in the ways that they want it or in not rushed ways or in ways that aren’t financially ripping people’s lives apart. Yeah, I don’t know. Yeah, just some things to think about.
Totally. Yeah, definitely.
To switch gears a little bit, you have spent a lot of time hanging out with people while they’re dying, and I’m wondering if you wanted to talk about that a little bit. I feel like I don’t have any super specific questions around that. But, it’s something that I’m…something that I’m very unfamiliar with and wish I–I mean, I don’t wish that people that I was close to were dying–but, you know, I always want tools for navigating those experiences when they do happen.
Yeah. So I feel like getting to spend time with people in their last few moments is such a special and specific form of intimacy that can’t really be recreated. You know, I feel like death workers tend to–and I’ve also been guilty of this myself–just talk about, like, how beautiful the, you know, this process is and what a gift it is to get to be in the space. And, I believe and agree with all of that. And, I also know that for grieving people, it doesn’t always feel beautiful to watch your loved one…You know, maybe their body looks different than you’re used to. Or, you know, like to watch someone go through this, sort of change, this metamorphosis. doesn’t always feel special and beautiful to people when they’re grieving. So I don’t…I don’t want to negate the heaviness of it. But, I think, you know, in a way, it is really beautiful and it is really special. And, you know, they say that hearing is the last thing to go, so something that I always urge family members, when they’re in the room with someone who seems like, you know, like they can’t interact with you, they’re just breathing and, you know, you can’t really like have much interaction with them, is just to talk to them and tell them the things that either, you know, last words that you wish that you could tell them or I think oftentimes dying people want permission, want permission to die. And, you know, if people can, I really encourage them in those last moments, those last bits, to just like, you know, to release someone from this, from this Earthly existence. And I don’t, you know, I have…I am not going to speak to whether or not we just die, whether or not there’s an afterlife, or, you know, that’s not my wheelhouse, but I do know that it feels so nice to know that someone is letting you know that it’s okay to go. You know? And, that, you know, people are going to be okay. Like what a relief and what a gift that can be to someone. Yeah. And the whole point of all of this, including, you know, the Advanced Directives and having your disposition stuff figured out, all of this is just to set us up to be able to provide the people that we love more time and space to grieve in ways that feel appropriate for them. You know, the more decisions we make for them about how to deal with the fact that we’ve died. That’s just offering up so much space. And then, people get to really be in their process if, you know, if they can. Sometimes it takes people years to grieve. But, you know, as much as we can set them up for success, I think that’s the best case scenario.
Yeah. Yeah. I feel like I know the answer to this, but just to vocalize that as a question, like, is it important for a death doula to be close to the person that they are providing end of life care for? And…Or how would, how would you phrase those words, What terms? What terms would you use?
I guess I want to make sure that I understand the question. Like, do you mean physically close? Or do you mean, is it important that the death doula be in relation and community with that person?
The latter. Yeah.
Yeah, definitely not. I think that that is a wonderful scenario. And when that can happen, like, what a beautiful gift and the depths that you can go to together in like figuring out this process is just like, even better. But I think, you know, sometimes people really want someone who’s kind of removed. Because, some of this, sadly, is our transactional decisions. And sometimes it feels a little too close to home or someone can’t be fully honest with someone that they know really well and they want sort of…kind of like a stranger buffer, kind of like why some of us choose therapists, you know? Like, you want this kind of like outside resource that you can reflect and say things that you might not want to say to someone that you really love, you know? I think that it can be a similar thing. So, you know, I think it’s great when it can happen, that it be someone that you’re close to. And I also understand why some people want it to be a stranger. There’s benefits to both.
Yeah. Yeah, that makes a lot of sense. It’s…I feel weird to bring this component into it. And I don’t really remember these books. And I’ve also heard that the author is questionable, like a lot of people in the world. But, there was this concept that, you know, I’m half remembering from a book. Have you ever read "Speaker for the Dead?" [Roxanne makes a sound of negation] It’s this book by Orson Scott Card, who…Yeah, I don’t know, maybe there’s questionable things, I don’t know. But it proposed this, you know, this concept of this person who was this speaker for the dead and this person’s role was to go around and facilitate these rituals or these processes around people who had died and, you know, they’re pointedly like, not even necessarily part of that community. And, you know, they’ve maybe never…they’ve probably never interacted with even like the living person. And I, you know, I found that concept super interesting and alluring when I was 12 and reading these books, which is ultimately not really what that book was about, but the concept of a "speaker for the dead" or like…that’s maybe not even necessarily like what a death doula is…It was just super interesting and intriguing to me.
Yeah. Yeah, that sounds really cool. The thing that I thought of when you said that was just thinking about like feeling cautious around some of that, like as a white person, making sure that you are not walking into communities of color and trying to tell them how to grieve and what a funerary process can look like and things like that. So yeah, I think it’s interesting to think about, like, the outsider piece. And also, yeah. Sounds like that’s not what the book was saying. But that’s what it brought up for me. Just thinking about…Yeah, I know, I keep mentioning how death work and birth work are so similar, but I think both things have historically been, you know, really white washed, and have been given to more privileged communities, you know? Like, many good forms of care are saved for extreme privilege. But, hopefully we’re changing that.
Yeah, yeah, totally. Um, one kind of like, I guess, you know, post-life death mourning celebratory experience–flailing for words–Turns out our culture doesn’t have a lot of words for talking about these things. Maybe that’s part of the problem. Yeah. But like, one thing that I’ve heard about–I’ve never experienced one–that I was always like…that sounds amazing. And, you know, I’m not part of this culture. So, you know, I’m not gonna have one or anything. I just think it’s beautiful, is the idea of second lines, which are a thing in New Orleans. I don’t know if they’re specific to New Orleans. Do you know much about second lines? I feel like I’m bringing up a concept…
They’re so beautiful. Yeah. I don’t feel like it would be appropriate for me to really explain it, because it’s also not my culture, but I think that it’s such a–I have seen second lines–and I think that it’s such a beautiful and, you know, joyous way for community to come together and mourn and grieve together and dance and scream. And yeah, it’s such a beautiful ritual. That is what I can say about it, is that it’s absolutely such a beautiful ritual. Yeah, and I hope that, you know, we can think of and create more and more beautiful rituals as we go along on ways to both celebrate and grieve at the same time, because those two things really, you know, joy and grief really love each other. We often treat them as opposites, but they are…Because of one, we have the other. And, it’s such a beautiful blend.
Yeah, yeah. I feel like this is getting into a territory that I absolutely want to talk about more, but I also really want to have y’all back on at some point to talk about mourning and grieving and kind of like post-death experiences.
Would love to do that.
Wonderful. So yeah, I don’t want to get into it too much. But um…Yeah, are there any other kinds of things about kind of like death doulaing…death–being a death doula, that you want to bring into this into this conversation? I’m sorry, I don’t have any…I’m super intrigued by it, but I don’t have any super specific questions.
Yeah, totally. You know, the thing that I think I would talk more about but I don’t exactly know how to really get it going is to talk about "Death with Dignity," sort of. Like, "Right to Die," stuff, because it is really changing in this country right now. And, it’s really exciting. And, there are definitely aspects of it that are contentious. But, I feel really privileged to be someone that has gotten to experience this pretty extreme form of autonomy and self-direction that I find really inspiring and intense and brave. And, I don’t really know…You know, it’s like my role and capacity as someone who sits with people making these choices isn’t as a death doula. It’s just as a volunteer, a member of a community, who deeply believes and advocates for the fact that people shouldn’t have to die alone. And I think because of this specialization thing that we’ve touched on a few times, people don’t feel confident dying or sitting with people while they die, or, you know, all…pretty much all of the things that we’ve been talking about in this episode. And I think the more that we’re educating each other, the more that we’re talking about these things as a community, asking questions, the more confident we will be in approaching these situations and making autonomous, and educated, and self-directed decisions for ourselves. And, that’s really the point here is autonomy and self-determination. And as a queer, as an anarchist, you know, like, all of the things that that feels like such an important place, that we’re not just trying to figure out the things in our life, but that we’re also figuring out those things in our death.
Do you–God, this is a weird question–but do you have any tips for people who are…who are sitting with people who are dying, or holding space or like caring for people who are dying, who, you know…people who aren’t death doulas? Like say, that person’s friends and loved ones.
Totally. Like someone sitting with their grandmother, for just an example or something like that, you know, ask questions, if at all possible. If verbal communication is a possibility, I would ask questions. Touch. Touch each other. I feel like that’s such a powerful gift and tool that we can use. You know, I think because we lack the confidence in death and dying, you know, it’s almost like, "Oh, somebody just died, Like, I’m not allowed to touch them," like it becomes a crime scene or something. And that’s not the case. When my father died, I absolutely climbed into bed and just laid next to him for a long time. And, that felt like such an important part of my healing process. And that might not be true for other people, but yeah, I really encourage people to really, as much as they feel comfortable, to be hands on, ask questions, and if it seems like, you know, if this is a consenting situation. You know, I recorded my dad breathing a lot. Just so that way I could have something when I felt like I really needed that, that I could go back to and listen. And yeah, I think…Yeah, asking questions, inviting vulnerability where you have capacity for, and asking for help. If you need help, that’s okay. And I feel like sometimes, you know, sometimes we feel like, "I’m the only one that can handle this." I feel like so often in grief, we really feel like we’re the only ones that have been through a situation. And there might be specifics to what we’re going through that are specific to our individual situation. But, the more and more people you talk to about this, you know, like, most people have lost someone, have been through some kind of stage of grief. And even if we feel alone, we’re not actually alone. And when we find the capacity to open up and let other people into that space of grief with us, you’ll find that there are so many people that can share similar experiences with you. But you know, that’s all when people are ready.
Yeah. Yeah, totally. I like…I’m gonna have a weird moment of vulnerability and honesty with…the world. But, you know, like, I, when I’ve had people who I have been close to die, like, I have noticed that I like…I shut down a little bit. And it’s hard for me to understand how to interact with someone, I think, you know, because of this, like this weird divide that we have around death, this thing where it’s like, "Do we do we talk about it? Do we talk about this person dying? Like, you know, with that person?" And I think this thing that I always wonder is I’m like, "What do people want?" Like that…What have you found people want when they’re dying? When they’re sick? When they have terminal conditions that everyone is aware about? Like? Yeah, what? What do people want? What I imagine they don’t want are these awkward conversations where no one’s really talking about it or people are hyper focusing on it. And like, I get caught in the…Like, where’s the middle ground between those things? And like, personally, I’m like, I don’t know, I can be–not like blunt–but just like super willing to talk about awkward things that are in the room. Yeah, I don’t know. That’s a weird, broad question. But yeah, what do people want when they’re sick? Or?
Yeah, I think that’s a great question. And obviously, it’s gonna depend person to person. And because of that, I think really just, you know, use your active listening skills and follow their lead. It’s absolutely okay to ask questions. I feel like, in some instances, people really want to talk about what’s going on with them, or the things that they’re scared of, or resolving some aspects of conflict. And sometimes, people want to act like it’s not happening at all, you know? And sometimes…And a part of that is people holding out, you know, some form of hope that at the, you know, at the 11th hour, something’s gonna come in and change their situation. And there’s a lot of different reasons for how engaged people do or don’t want to be. But, I think it’s always okay–You know, people are so worried about saying the wrong thing. And I don’t really think that that’s…I don’t really think that that’s possible. I think that as long as you’re approaching someone with love, and compassion, and you’re not pushing anything, if you get the impression, or someone says that they don’t want to talk about something, let them be the guide and don’t push it. But, I think oftentimes, you know, people might not want to, you know, constantly be harboring on, you know, the terminal cancer that they have or something. So, you can ask them about aspects of their day that brought them joy, you know? It doesn’t have to be–just because someone’s dying, that’s not the end of their life, until they die. So, you know, there’s still a lot of room for joy, and connection, and intimacy that has nothing to do with the inevitability of their situation. And, you know, I think that’s true for for grieving people too, which maybe we’ll touch on in the future, but I feel like when someone has someone close to them that dies, you know, people might not–oftentimes people don’t talk to them about that because they’re worried about, you know, bringing up something that feels hard or, you know, they just don’t–people are scared of not having the right thing to say. And I think that, you know, asking questions and allowing people space to communicate their needs and desires. And, you know, for me, when I’m sitting with patients’ families after they die, one of my favorite questions is to ask them about a story or like to ask them to tell me something that they really loved about that person. And that’s, that can be like a really special moment because people, you know, we all like to brag on our people and bring that softness into the room and give people the opportunity to just really express gratitude and joy around the thing that they’re, that they’re gonna miss. Yeah.
Yeah, yeah. It feels like this isn’t, you know, too much of a surprise, but from everything that you’ve just described, it seems like the best way to interact with people is to continue treating them like a person and having these humble and inhuman interactions in ways that you, you know, in the ways that we hope that we’re interacting with or treating loved ones in all parts of our life already.
But, it’s like when death is suddenly a factor, when sickness is suddenly a factor, it’s like something changes. And I don’t know, does that, does that feel true? Or, I guess, that’s something I experience, so I guess it’s true. But like, yeah, what do you have to say about that?
Yeah, I think it can change. And I think that keeping our eyes on how those things are changing, you know, is important. Like, maybe you have a close friend who’s dying. So, obviously it feels like something is changing. But again, like, as we just said, like treating those people like people, asking about their day, you know, the more kind of mundane things, and yeah, I guess, like…I guess what I was thinking is like, questioning, like, you know, potential for internalized ableism around how things are changing, or why they’re changing, and making sure that we aren’t projecting that change on to someone unnecessarily. Because things are changing, all the time, every day, in every situation, for all of us. Whether we’re facing an imminent life ending situation or not. Yeah, maybe that’s not exactly the question that you were asking, but…
Oh, no. Yeah, I think that definitely covers it. I thought of this other thing while you were talking about that that was, I feel like, it’s like, maybe the thing that changes sometimes is like, when someone, when we know that someone is sick or going to die, or likely going to die, or it’s a question in the room, it’s like a–this is not the word that I want to use, but I don’t know what other word to use–It’s suddenly like they are like…God, I really don’t want to use this word. Really gonna try to think of another one. Not like a pariah, but like, it’s like they’re like…It’s like a–I can’t think of another word to use, so I’m just going to use it–and obviously this word has like different contexts–but it’s like almost like an othering experience where like, this person is suddenly just something else. And–or like an alien. That’s also not the word but like…
Fragile? Is it fragile?
Yeah, maybe fragile?
Yeah, I think, you know, giving space for the potential of fragility makes sense. But, I think it’s also really important to not treat people like they’re fragile just because they’re dying or just because they’re extremely sick, unless they have signified to you that that is a way that they want be interacted with. You know? I think I’ve definitely heard that a lot, especially from, you know, I was an oncology nurse for a long time. And I feel like I heard that a lot of my oncology patients were just being like, "Yes, I have cancer. Yes, I’m fucking dying. No, I don’t want to be treated like I’m, you know, suddenly incapable of making decisions for myself or like everything is gonna hurt me or…" you know? Like, yeah, they’re the–I think that it is really, you bring up a really good point about the othering aspect, and I think that that’s like, from my understanding, a lot of what disability justice stuff is working on, is trying to shift the narrative of that othering. And, because…
Yeah, because that’s like, that’s a big thing for disability communities in our society is that they kind of get othered in this way or like…
I don’t know, is that…We don’t have a ton of time, but I would love to, if you have anything to say about bringing kind of that lens into this conversation of death, dying, and the conjunction with disability. It could be a larger conversation…Yeah, it could be an entire…
It could be its own…That is a very very large conversation. But, I think as far as how we treat each other, just yeah, really following people’s lead and believing them when they say how they do or don’t want to be treated. And that’s true for all forms of living. That’s true for all forms of dying, you know? Just making sure that we’re checking ourselves, not projecting our own sense of urgency on each other, and just letting those people–meaning in this situation, people that are dying–you know, direct how things go. And yeah, there’s really so much that can be said on that topic. And I’m so happy that you touched on it.
Yeah, I feel bad just touching on it. But it’s kind of like where the conversation ended up flowing. But, which…Yeah, I guess. Yeah, I guess what I would just love to say about in this more brief context is that it seems like a lot of things that are applicable to the world of death and dying are things that disabled people have been talking about for a very long time already and like doing a lot of work around. Obviously, they’re not the same things, but they’re, seems like there’s similar things that come up in both of these situations. And yeah, we should do a different other episode about that whole conversation.
Yeah, there’s so much to be said. And this is a really important thing to talk about. So yeah. Mhmm.
Yeah. Um, with that, we are kind of coming up on the end of our time for this, what turned into a two-parter episode, as much as I would love to make it a three parter episode, I probably can’t talk for another hour. But yeah, obviously, I would love to have you and Wōen, and or like other people from Woven Ends to come back on and like talk about grief and mourning and celebration even. Yeah, and I just want to mention this because it’s a piece–obviously, we could do a whole episode about this too. There’s so many things to talk about. But, so you used to do a workshop about death and dying. And, that’s actually what got me interested in doing this episode is that I went to one of these workshops, you know, years and years and years ago. And, as we’ve been doing this podcast, it’s been this constant question in my mind, is like, "How do we prepare for death as a community?" And you know, maybe we can do an episode in the future that’s just about that. But, there’s this little piece from it that I just want to bring into this conversation that I, you know, probably could have gone in a different spot of the talk. But, obviously, we need to…The important thing is to have conversations as a community about death, about dying, about preparing to die, or preparing to get sick, or preparing to have some large life changing thing happen. And one of the things that that brought up for me was this idea that like, you know, a lot of people, especially queer and trans people, have some amount of separation between their lives and their biological family or the family that raised them, and these worlds can look very different. Like, a lot of us can build these separate worlds where we’re these two different people depending on how out we are to our biological families or families that raised us. And, it brought up this big thing for me where I was like, "Oh, one big conversation that I need to have with my friends and my chosen family is how to talk to the people that raised me and my biological family, like two groups of people that I love, but two groups of people that I have very different and separate relationships with. And, you know, for other people, thinking about things like, does your…if your chosen family and your biological family, if they have to interact, does your biological family or the people that raised you, like, do they know what name you go by? Do they know that you’re queer? Do they know that you’re trans? Do they know that…Like, what gaps in information are there and having conversations with your friends now about like things that they might have to deal with if you get sick or die, in having those conversations with people who might–Like it might be great and civil and wonderful and everything goes really, really well and it’s really joyous. Or, it might be incredibly conflictual and difficult. And, yeah, not really a question. Just a piece that I really wanted to bring it into the conversation.
Yeah, definitely. And like, yeah. I think as much information as you can give your chosen family about how you want those interactions to go, you know. Some people are, you know, out to their community, but aren’t out to their family and would like to remain not out to their family. And, that’s okay. And, I think as a form of respect, you know, people need to use names and pronouns that are consistent with what someone is asking for in those situations. And, again, that is one of the many reasons why these conversations are so important. And again, just to keep plugging Advanced Directives, is why Advanced Directives are so important. And, you know, if we can write down even–if for some reason you don’t feel like you can have those conversations with your family or your community, you know, you can write it down and, and give someone a sealed envelope that’s like, "In case I die, please read this. This is how I want things…This is how I want to be talked about. This is how…" you know, because I believe and really trust at the end of the day that people want to honor you in the ways that you want to be honored and do really want to respect you and make decisions that are good and safe for the individual as well as the community.
Yeah. Yeah. Cool. Well, do you have any other last last things to say, anything that we didn’t talk about, any questions that I should have asked you that I didn’t?
I don’t think so. I just want to thank you so much for opening the space. I know that it is really a hard thing for people to talk about. You know, when we talk about death, generally, it’s hard not to think about death, specifically, in our own circumstances. And, dealing with the fact that other people die means that we have to deal with the fact that we’re going to die. And yeah, it just feels really special to be in communication with you about this. And yeah, I just, I feel really grateful that y’all were willing to open the space and this dialogue. And yeah, I just, I really feel like it’s important. And, yeah, special. And I feel so grateful. Thank you so much for this.
Yeah, totally. Thank you so much. It’s been a pleasure. I love talking about these things. And I’m so glad that there’s people doing so much really amazing work around opening up these spaces and maintaining these spaces. And yeah, yeah. I don’t know. Obviously, the work that you’ve already done to do that has made it so that I want to bring these conversations into this space of community preparedness. So yeah, thank you.
Is there anywhere on the internet that you would like to be found or that Woven Ends would like to be found? The answer can be, "No. Don’t find me."
Currently, no for Woven ends, and honestly, no, for me too, I do have an old death doula Instagram account that I used to refer people to, but I don’t really use it. It’s not a good resource tool. So, no.
I love it. I love when people can’t be found and shouldn’t be found on the internet.
But if people have dire questions–Gosh, we really should have some kind of email or something. Maybe I can send that to you?
Yeah. Yeah, we can put some stuff in the show notes.
Some sort of way for people. Yeah. Because I don’t. Yeah. If people want to, I don’t have a quick like, "Here’s my Twitter handle."
Thank God. Yeah. Got it. Yeah, if you have anything, send it to us. We’ll throw it in the show notes. The episode is not going to come out for a couple weeks, probably. Yeah. Cool. Thank you so much for coming on. And we will see you and Wōen back, hopefully soon, to talk more about this.
Definitely. Thank you. Have a good day.
Thanks so much for listening. If you enjoyed this podcast, please live like you will die. Because we all will. But more importantly, talk to your community, your families, your friends, your ancestors, about death because having these conversations doesn’t have to be scary and having them now can really make a difference in other’s lives and for our end of lives. You should also tell people about the show, you can support this podcast by telling people about it. You can support this podcast by talking about it on social media, by rating, and reviewing, and doing whatever the nameless algorithm calls for. Feed it like a hungry God. But, if you’d like to support us in other, sillier ways that don’t involve feeding a nameless and mysterious entity, you can support us on Patreon at patreon.com/strangersinatangledwilderness. Our Patreon helps pay for things like transcriptions, our lovely audio editor, Bursts, as well as going to support our publisher Strangers in a Tangled Wilderness. Strangers in a Tangled Wilderness is the publisher of this podcast and few other podcasts, including my other show Strangers in a Tangled Wilderness, a monthly podcast for anarchist literature, and the Anarcho Geek Power Hour, which is the podcast for people who love movies and hate cops. And, we would like to shout out a couple of our patrons in particular. Thank you, Carson, Lord Harken, Trixter, Princess Miranda, BenBen, Anonymous, Funder, Jans, Oxalis, Janice & O’dell, Paige, Aly, paparouna, Milica, Boise Mutual Aid, theo, Hunter, Shawn, SJ, Page, Mikki, Nicole, David, Dana, Chelsea, Cat J., Staro, Jenipher, Eleanor, Kirk, Sam, Chris, Michaiah, and the eternal Hoss the Dog. We could not do this without y’all and I love how wacky and long this list is getting. I love it so much. Thank you so much. And I hope that everyone is doing as well as they can with everything that’s happening. And I hope that this conversation, I don’t know, gets you talking with your community or just instigates some stuff, some good conversations about something that is weird and scary. Take care, and we’ll talk to you soon
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