Anonymous #35 — How Do You Keep Loving People When You're the One They're Going to Lose?

This week's caller was diagnosed with a terminal illness at eight years old. They have never not known that death was part of their life.

They are an actor, a writer, a reader, a person who rescues snails and keeps a pet millipede and loves sharks because they understand what it feels like to be misunderstood. They are also someone who has spent their entire life figuring out how to live fully inside a body that makes that complicated.

This is a conversation about what it looks like to choose life, loudly, intentionally, and without apology, when death has always been in the room.

We talk about the guilt of knowing you're going to hurt everyone who loves you, the difference between being afraid of death and being afraid of dying, and why so much of how we portray terminally ill people in media gets it completely wrong. We also get into what they hope they can do once they're gone, why they want to perform at the Edinburgh Fringe Festival even though their doctors would disagree, and the one thing they still want to experience before they die, which is not what you'd expect.

In this conversation:

• The difference between fearing death and fearing the process of dying
• Why "you don't look sick" is something we should all agree to stop saying
• The guilt of knowing your death is going to hurt the people you love most

Book recommendations: Reverie by Ryan La Sala; I Fell in Love with Hope by Lancali

More book recommendations from past episodes: View the full list

Video Episode: If you’d like to watch this conversation instead of just listening, you can find the video version on YouTube

Nemosené: Your Life Story
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Transcript

Death Versus Dying Cold Open

SPEAKER_04 0:00

And I'm not scared of death. I am legitimately not scared of dying because in my brain I'm like, well, it just means I won't hurt anymore. But I'm I am terrified of dying.

SPEAKER_01 0:09

Dying. Yeah.

SPEAKER_04 0:10

Because it's like, well, how bad is it going to hurt before it's over?

SPEAKER_01 0:14

Because those are two different things for sure. Death and dying, yeah. Yeah.

SPEAKER_04 0:18

And there's also just something very terrifying about the fact that there are so many things that set my disease off. I mean, like, just off the top of my head, physical exertion, emotional exertion, high emotions, cold, literally being cold. But it's like life, pretty much. It's kind of emotions or life.

What The Show Is Really About

SPEAKER_01 0:37

It all starts with a single question asked to an anonymous caller. What do you think happens when we die? And from there, the conversation goes in completely unexpected directions. Some speak with certainty, others with doubt, some are still trying to make sense of it all. I'm Zach Ansel, and this is When We Die Talks, a podcast about death, meaning, and how that shapes the way we live. This podcast was born from my own fears around death and the need to talk about. Thank you for being a part of this conversation. I'm glad you're here.

Sponsor And Personal Storykeeping

SPEAKER_01 1:10

This episode is supported by Nimostheny, a project I've been building alongside this podcast. Nimostheny is a simple way to tell your story in your own voice. It's a guided, audio-first conversation with me where we capture the parts of your life that matter to you. Where you came from, the people who shaped you, the seasons that changed you, and the moments you don't want to lose. It's not therapy and it's not a performance. It's just a real conversation that becomes a private audio keepsake you can share with the people you love or keep for yourself. If you want to learn more, you can find it at NOMostony.com. That's N-E-M-O-S-E-N E.com.

Returning To Anonymous Calls

SPEAKER_01 1:50

Hey, welcome back or welcome here if this is your first time. Before we jump into this week's call, I wanted to say something briefly about last week's episode with Don. It's been a while since we took a break from the anonymous format, but when we do, it means something. And that one meant a lot. Probably more than I can ever express. I received more feedback about that episode than anything else I've ever put out. People saying they cried the whole way through, that it hit them somewhere they weren't expecting. I'm genuinely honored by that, and I'm grateful to Don for trusting me with it. To be completely honest with you, I still haven't been able to listen back to it myself. I don't think I'm ready yet. That'll come with time. But thank you sincerely for the warmth you've shown around it. This week we're going back to the anonymous format, and I think it's a fun one to jump back into.

Meet The Caller And Their Loss

SPEAKER_01 2:35

Our caller is a nurse, which already puts them in a category of people who are around life and death in a way most of us aren't. On average, they're present for roughly two deaths a week. But the curiosity didn't start with the job. When they were a teenager, they lost their childhood best friend. Someone they'd known since they were nine, someone they described as their ride or die. They were there when it happened, and they were the one doing the CPR. And that loss and the questions it left behind is a big part of what sent them towards nursing in the first place. What grew out of all that wasn't a fear of death. It was something that I think a lot of people can relate to. A fear of leaving people behind. This conversation goes a lot of places. We talk about reincarnation through the lens of a Mario video game, which sounds absurd and somehow works completely. We talk about what it feels like to watch someone die when you've done everything right. We talk about a man who spent his final moments alone because of something he said twenty years earlier that he never took back. And underneath all of it, there's this person who's seen more loss than most people twice their age, and they still show up. Still hopes they get to give the most embarrassing wedding speeches of all time for their sisters and their best friends. Let's get into the call.

Terminal Diagnosis And Being A Plot Point

SPEAKER_01 3:42

I hope you enjoy. Hey, how's it going?

SPEAKER_03 3:48

Good. How are you?

SPEAKER_01 3:49

I'm good. I'm excited to chat with you.

SPEAKER_03 3:51

I know, I'm so excited.

SPEAKER_01 3:53

Yeah, I feel like your application is very interesting and very exciting. Um excited to chat with you, but I don't want to be like, oh, this is the most exciting one because then people are going to be thinking I'm picking favorites or something.

SPEAKER_03 4:06

Oh no, I don't I don't think that works.

SPEAKER_01 4:08

My my concern is always you get to be anonymous, but I don't. So I kind of am always like a little nervous about like if I say something and then everybody hates me, then nobody will ever listen again. But it doesn't keep me up at night at all ever.

SPEAKER_04 4:23

So I'm an actor, so I definitely get that.

SPEAKER_01 4:25

Oh, perfect, perfect. I'm not. So maybe you can teach me some skills or something. I'm so glad that you were interested in doing this. So I just want to say thank you off the top. And then I think maybe the most basic question right out of the gate, why you even wanted to do this conversation? It's a topic that a lot of people tend to avoid. It's a conversation a lot of people are afraid to have. And so you applied to a stranger's post on the internet. Which sounds way more sinister or creepy than I intended that to sound. But yeah, I'm posting this out and trying to get people to talk to me about death. So uh why did you want to do that?

SPEAKER_04 5:02

Yeah. I mean, for me, I was diagnosed with a terminal illness when I was eight.

SPEAKER_02 5:07

Okay.

SPEAKER_04 5:08

So death definitely hasn't been something that's not on my mind. And I've always thought that we can laugh about it or we can cry about it, and laughing is a lot more fun. And I also feel like, you know, I'm in I'm in theater and I'm also a writer. And I feel as though every story I've seen that center around terminally ill people are about how it affects everybody else. And the best example I ever gave was uh when I was very little, my grandmother read Little Women to Me.

SPEAKER_01 5:38

Okay.

SPEAKER_04 5:38

And I hated it so much.

SPEAKER_01 5:41

That's also like quite the book to read to a child, right? I mean, I haven't ever read it, but that's like there's a lot going on.

SPEAKER_04 5:48

Yeah, there definitely was. But um, but no, my grandma read Little Women to Me, and I remember, I think it's Meg or Beth, uh, wh whichever one is sick.

SPEAKER_02 5:55

Okay.

SPEAKER_04 5:56

I remembered how much how angry I was was because she was a plot point. All she she wasn't a character, she wasn't a person, no one cared about anything about her. Meanwhile, all these other girls, you know, Joe has all these dreams and everyone has these dreams, and she makes people feel good about themselves. Because all and as I've grown up and as I've been in theater and and been on film sets and and watched films, and it's always they're so strong, and they have so much emphasis on how good they make everyone else feel.

SPEAKER_01 6:24

And I just feel like that's interesting. Yeah.

SPEAKER_04 6:27

I wanted to be able to talk about what it's like to be the one dying instead of having my death be a plot point.

SPEAKER_01 6:35

And there's so many things in there that already set the stage for a wonderful conversation. And again, I don't want to play favorites for with what you just said, but one of the things that I constantly run up against with I keep on saying I'm almost 40. I'm 38, and people keep on correcting me and saying that that's not almost 40. But I have a lot of friends that think I'm crazy for doing this. And the one thing that I always kind of say is there are episodes of this podcast that are, I would say, devastating. That, you know, I'm crying and and whatnot, but there's still laughter in it. And so I love that that's one of the things that you brought right in the forefront is that you choose to bring laughter and joy into this conversation instead of dwelling on the status. So I think that just sets the tone for this conversation. Even though you've said that, you know, you have a terminal diagnosis, like I think this is going to be a fun conversation. And that always feels like a weird thing to say at the beginning. But I am excited and we'll dive into all of that. But maybe just to get to know you a little bit, um, of course, kind of keeping the anonymity and everything. I've even kind of backed off this a little bit because some people were a little hesitant to say the city that they were in. So

Books That Made Death Feel Real

SPEAKER_01 7:40

maybe the state that you live in, and then your favorite book and why. And if we go back to Little Women, then that's fine.

SPEAKER_04 7:48

I live in Los Angeles, so I'm I'm okay saying that because it's it's it's giant.

SPEAKER_01 7:52

Um there's a few people that live there.

SPEAKER_04 7:55

Just a few. I'm in sunny Los Angeles, California. Favorite book of the city. Actually, you know what?

SPEAKER_01 7:59

I'm gonna ask you one more question there. So you live in Los Angeles. Where did you grow up? Maybe that's what I'll start asking is where you live and where you grew up.

SPEAKER_04 8:08

Yeah, okay. So I live currently in Los Angeles. I grew up in Drone Roll, please. Los Angeles. Nice. Well, I l I live in um Los Angeles County. Okay. Um now I live in the heart of Los Angeles. But I grew up in the very last city that is in Los Angeles. It is a tiny city. I will refrain from saying the name because there are about 40 people that live there.

SPEAKER_00 8:30

Um legitimately.

SPEAKER_04 8:33

But yeah, so I grew up in a very, very small town in the very end of Los Angeles County.

SPEAKER_01 8:38

Okay.

SPEAKER_04 8:38

And now I live in the heart of DTLA.

SPEAKER_01 8:40

Perfect, perfect. Okay, yeah, I think maybe that helps give some context of like what the influences in your life are. And and not that we can make a blanket statement about that, but I think depending on where you grew up or what you experience, it might color your thoughts on this conversation. Anyway, I'm explaining too much. Your favorite book and why. Sorry.

SPEAKER_04 8:59

Oh, all my friends know I am the biggest reader. I love books. I mean, I'm an English minor in college. So I love books, but oh my gosh, my favorite book. That is that is the question. Um, I will say it's a tie.

SPEAKER_02 9:12

Okay.

SPEAKER_04 9:13

So my favorite book when I was like the first book that I read in like middle school, high school, that I was like, oh my gosh, mind blown was a book called Reverie by Ryan Lasala.

SPEAKER_02 9:26

Okay.

SPEAKER_04 9:27

And it's about this urban fantasy, and it's about this group of friends that are able to go in people's dreams. And it's really fun. The main villain is a drag queen sorceress. Um there's a love story in it. It's the main character, he had gotten in a horrible accident, and so he lost all of his memory. So he has all these friends being like, Oh my gosh, and you're this and this and this. And he's like, uh-huh. Yeah, no, I have no idea what you're talking about. But um, I've always loved things where it's like based in reality, but then so different. And um Yeah, there's a little magic in there, too. This is my favorite book. Yeah. And then my favorite book right now is a book called We Fell in Love with Hope. Okay. And it's narrated by Hope and Death. And it's about five terminally ill kids in a hospital. And it is the most beautiful book I've ever read. Like it is poetic and heartbreaking and hopeful. And you see how much these friends cling to each other, and you see how hope, the narrator, truly has such a emphasis in how much she's trying to drive the narrative. And then you also have death and how much he's not malicious, he's just factual, and he has to do what he has to do.

SPEAKER_02 10:41

Yeah.

SPEAKER_04 10:41

And it's beautiful. And and the story around how it got published is also heartbreaking and beautiful. So it's just I highly recommend that book.

SPEAKER_01 10:48

Yeah, that sounds fantastic. I say this all the time, but that book does sound wonderful, and I'm gonna add it to my list. My ever ever growing list because that sounds really, really good.

SPEAKER_02 10:58

Yes.

SPEAKER_01 10:59

You probably totally understand the the reading list issue. Like it's just you can't, it's impossible to keep up. Even it sounds like you read a ton, I read it, it you just can't. There's it's impossible to keep up with the amount of books coming in that it's like, oh, that sounds good. And that's fine. Oh wait, oh wait. Yeah. Well, thank you for those recommendations. And now I I'm like I said, I'm really excited to dive into this conversation because I feel like you have a very unique perspective that I'm trying to think. I don't know if we've had from the sounds of it, you're fairly young. So I don't know if we've had someone quite as young with this kind of perspective of a terminal diagnosis. So I'm very curious to see where this conversation

What Happens After We Die

SPEAKER_01 11:39

goes. But we will start it off with the one big question of what do you think happens when we die?

SPEAKER_04 11:44

I've thought about this a lot. So hard. I have something I hope and I have something I think. What I think happens is from a very scientific perspective, you know, our bodies decay, yada yada, yada. But I do feel like we all have some sort of soul. I I'm not religious, but I do think that there is someplace that a soul goes. I've lost a couple friends, and my mom's lost a astounding amount of people. She grew up in a very, very, very poor neighborhood, and there was a lot of drug abuse and a lot of very unsafe activities. And so growing up, she lost so many people. But there's some people that I all we always feel like they're sending messages or something. Um, especially she was very close friends with someone who was in a pretty successful band. He was a great singer of it. And before every really good thing that happens, if we're in the car or if we're in a grocery store, his song will come on.

SPEAKER_01 12:38

Like one of the things.

SPEAKER_04 12:39

And it's like, of course, these things could be coincidence. These things could be, you know, confirmation bias, but there's something that just feels right.

SPEAKER_01 12:48

Well, yeah, at some point, the odds of that coincidence happening over and over and over again, that does get to a point where it does get kind of weird.

SPEAKER_04 12:56

Yeah, absolutely. And like my my grandfather died when my mother was uh about 15.

SPEAKER_02 13:01

Okay.

SPEAKER_04 13:02

And he he was a director. He was um also in film. And they're whenever I'm about to go in for an audition, I feel like someone's there. And so that kind of leads into what I hope is I hope I have a way that I can watch over people. Um you know, I have I have so many friends that they don't like talking about me being sick and my family. I mean, my mom, when I got diagnosed, I mean, one of the first things she said was, I can't believe I'm gonna have to bury my daughter. And even like my grandma, she was like, There's no way I should go, like you should go before me. And I just really hope that there's a way that I can look after everyone. And I've loved butterflies since I was born. My room was decorated with butterflies, especially blue morphos. So I want if I can have the power, I want to be able to send people butterflies whenever they feel like they're alone. Into the woods is one of my favorite musicals of all time. And there's um the last song is no one is alone. And I want to make sure that everyone knows that I am able to still watch them and keep them safe. And you know, I guess a lot of people would call that like a guardian angel. And I hope that my soul's able to be somewhere that's calm and I'm not in pain anymore, and there's fields of flowers and oceans, and I hope that there's also a lot of souls of kids that I can take care of because I've always loved being able to help people. I mean, I've really always loved to help people. So I I hope that there's somewhere where I can just help people, but also not have to be in a world where I am in pain all the time. Yeah. So understandable.

SPEAKER_01 14:43

Yeah. This is always the part of the conversation that gets really interesting because I have like five million questions now. And so I'm like, okay, which way which direction do we go? I think what I am very curious about, especially with your application.

A Body At War With Itself

SPEAKER_01 14:56

I mean, you've already talked about it multiple times, but I am curious about your diagnosis and like what that looks like. I think I do want to pull this quote out that was in your application. And you've kind of mentioned version of this, but I thought this was really beautiful too. I want to speak about death and dying from a lens of determination, hope, and my deep love of life. And so I thought that was wonderful. And so yeah, I'm curious. Maybe we can maybe you can give an idea of the diagnosis and we can kind of talk through what that has been like.

SPEAKER_04 15:26

Yeah, of course. I'm not gonna give the specific disease that I'm diagnosed with just because that feels a little bit wonky. But um I started getting really sick when I was about three months old. And for a very long time, no one had any idea what was wrong with me. I I remember when I was writing my college application, one of the first sentences was, I have been to every single floor of children's hospital because I have a condition that affects every organ, every part of my body. It is something is wrong with my DNA. And pretty much without giving too many specifics, my white blood cells, they don't know what's a disease and what's part of me.

SPEAKER_02 16:05

Okay.

SPEAKER_04 16:06

So everything attacks itself constantly. And when I was really little, I mean, they thought first they were like, okay, something's wrong with her blood sugar, maybe it's diabetes. No. Okay, something's wrong with her stomach, maybe it's some sort of stomach disorder. No. And it the list went down and down and down and down and down because every organ something was wrong. And I was just getting sicker and sicker and sicker. And I would have these periods where I was fine. I was people would be like, Oh, but she doesn't look sick. She looks so normal, she looks so healthy, she's so happy. And then another super helpful. Yeah, so helpful. But another flare would hit and I would be bedridden. So much of my childhood was even before we got the diagnosis. It was me having to realize that I had to pay for everything I did. So I used to be like, okay, I have a school pizza party on Tuesday, but my friend invited me to a birthday party on Sunday, which is more important to me because I know I can only do one. And that was my entire life. I paid for every game of tag. I paid for every time I was a child.

SPEAKER_01 17:06

That's a big responsibility. I mean, maybe responsibility is not the right word, but it feels like a big chore responsibility, whatever, to put on a child. And not that someone, but the whatever, the universe or whatever, who I don't know. But yeah, to just that have thrust on you, like that's gotta be incredibly challenging.

SPEAKER_04 17:24

Yeah. And especially considering it was also like we didn't have anything we could explain to people. Like we didn't know.

SPEAKER_01 17:30

Yeah, we're still trying to find answers.

SPEAKER_04 17:33

Yeah. So it was it was a lot, it was a ton of tests. It was days and days and days in the hospital and stuff like that. And it was when we finally got the diagnosis, they got the diagnosis for the disease when I was about six, and then they figured out the severity of it when I was eight.

SPEAKER_01 17:48

Okay.

SPEAKER_04 17:48

And at first it was a weight, I mean, when we got the disease, it was a weight off the chest. Oh, there's there's something this is something that you're doing. We know something. There's medication, there's things to do. And we tried the medication for two years and we found that I have the medication-resistant variant.

SPEAKER_01 18:03

Fun.

SPEAKER_04 18:03

So I have the most severe variant. Yeah. Great, fun, cool. I remember getting the diagnosis. It was in the same breath as a doctor said she will know a life of pain, which I feel like little unprofessionals tell an eight-year-old, but cool. Hope that man's doing great with his life. Um, that's one of those things that you that you just you never forget. Yeah, I think pediatrics maybe wasn't where he should have gone into work, but you know what? Hope he's having a great time. But yeah, he told us that it was terminal. And me and my mom kind of tried to like not think about that for a really long time. And then about a year later, I fully almost died. So at like palliative care? Yeah, okay, okay.

SPEAKER_01 18:45

I um trying to keep track of the timeline.

SPEAKER_04 18:48

Yeah, yeah.

SPEAKER_01 18:50

Jeez.

SPEAKER_04 18:50

Um, so I was sent into palliative care, my kidneys were shutting down, and I lost about 10 pounds in a week.

SPEAKER_02 18:58

Whoa.

SPEAKER_04 18:59

I couldn't keep anything down, I remember. I would throw up if I swallowed my own saliva. That pain I will never forget. Because it was my stomach legitimately felt like it was trying to leave my body, and every inch of my body hurt. Like my skin felt like it was on fire, my joints felt like they were constantly being pulled apart. It was horrifying. And I remember that was when I realized, like, oh, I'm gonna die. And it's one of those things where you think, oh, a child can't fully understand what death is. And in that one moment, I can tell you with 100% certainty, yes, I can.

unknown 19:36

Yeah.

SPEAKER_04 19:37

Because I was like, nope, I'm going to cease to exist. This is this is it. And somehow I got better a little. Doctors are incredible.

SPEAKER_01 19:46

I will always the ones that don't tell you that you're gonna have a life of pain.

SPEAKER_04 19:50

Yeah, the ones that don't do that. But um, no, healthcare workers are truly the greatest people that have ever existed on this planet. But after that, we call it the December episode because it it started in December. And after that, I think that was when we all realized, like, oh, this is really serious. And originally my prognosis was about 36. It's changed a little since then, kind of wibbly wobbly in the air.

SPEAKER_01 20:17

Do you mind if I ask better or worse?

SPEAKER_04 20:20

Uh not better. Um, definitely not better. It's more that doctors are like, well, it could be like a couple years, it could be like 10 years, but it's definitely not gonna be more than 36.

SPEAKER_02 20:31

Okay.

SPEAKER_04 20:31

And it's also like a constant thing of every time I go into a really bad flair, we're all holding our breath going, is this the one?

SPEAKER_01 20:40

Yeah.

SPEAKER_04 20:40

Is the next one the one? And there's really no- Which has to be so frustrating.

SPEAKER_01 20:44

I mean, not saying that you're like sitting there, I wanna die, but like, hey, this suffering really sucks. And yeah, sitting in this kind of limbo of like, is this it? That's gotta be really challenging.

SPEAKER_04 20:57

I would say that's like the only time I'm like really scared. And I'm not scared of death. I am legitimately not scared of dying because in my brain I'm like, well, it just means I won't hurt anymore. But I'm I'm not scared of death. I am terrified of dying.

SPEAKER_01 21:13

Dying. Yeah.

SPEAKER_04 21:14

Because it's like, well, how bad is it going to hurt before it's over?

SPEAKER_01 21:18

Because those are two different things for sure. Death and dying, yeah. Yeah.

SPEAKER_04 21:22

And there's also just something very terrifying about the fact that there are so many things that set my disease off. I mean, like, just off the top of my head, physical exertion, emotional exertion, high emotions, cold, literally being cold. Um, but it's like life, pretty much.

SPEAKER_01 21:39

Yeah.

SPEAKER_04 21:39

It's kind of oceans are life.

SPEAKER_01 21:41

Yeah. And you're not gonna go live in a bubble.

SPEAKER_04 21:43

I'm no, no. And I definitely like I've had people be like, Oh, you should rest more, you should do more things. And I'm like, Well, I I can't rest so all the time forever. Yeah, and I can't do and my favorite movie ever is Um Steel Magnolia.

SPEAKER_02 21:58

Okay.

SPEAKER_04 21:58

And there's a quote in it. That is, I would rather have 30 seconds of wonderful than a lifetime of nothing special.

Choosing The 30 Seconds Of Wonderful

SPEAKER_04 22:05

And that is how I want to live my life. Is I would rather have the 30 seconds of wonderful. I'd rather do that play, say yes to that, do that. Like my doctors are like, you shouldn't travel, and I'm going to Edinburgh to perform in a fringe festival.

SPEAKER_01 22:19

Nice.

SPEAKER_04 22:19

Because that's incredible. I'm the lead of a play in a fringe festival. That's insane. And like, of course, it's not a great smart idea for me to be across the world, but I would rather have a life that I can remember on my deathbed than a life of, oh, I wish I had done that. Like, I don't want that to be my existence of this hood of this ellipses of what possibly could be if a person would have just had the the bravery to live. I'm not afraid of the pain or the payment I might have to give for this. I would rather have a life that I can at least remember having an incredible life. So it's like that's I guess that's my biggest struggle with it is to be like, well, at what point am I being selfish, being like, I'm just gonna live, screw you all if I die. Yeah. And at what point am I just doing what needs to be done? Being like, well, I can't, as you said, can't live in a bubble.

SPEAKER_01 23:13

Yeah. So yeah, it's always a lot of things, I just said. No, that's great. I mean, I have I have a couple things that I want to mention there, but like life is a balancing act, whether you have a year, 10 years, 60 years. I mean, that's the other thing is everybody walks around like they have 70, 60, 50 years left. But none of that's guaranteed. I love that Steel Magnolius quote because what it makes me think of is that comment of, well, why don't you just rest more? And you saying, hey, you know, I want to have a life that's worth remembering. I think that statement from other people comes from this place of not thinking about death. It comes from this death phobic society where the ultimate enemy is death. And this is coming from someone who, like I said, still very afraid of death, don't like thinking about it, working through it. But when you look at death being the ultimate enemy, then why would anybody, not just someone with a terminal diagnosis, why would anybody get out of bed? Like there are so many things that could happen exactly on your commute to work, on your school or whatever you're doing. I don't know, you could eat something and you know, whatever.

SPEAKER_04 24:18

Like I personally don't like have a car, but all of my friends who are like, oh my gosh, like you should conserve your energy, you should rest. And I'm like, and you get in a car to go down the street. You could die. Yeah. You know how common car accidents are? Like, I you girl, you have a more likelihood than me right now.

SPEAKER_01 24:35

Totally. Yeah, it's that mentality of, well, yeah, you know, like, then do less because then you'll live longer. But is it worth living longer to and also, like we just said, there's no guarantees that that will make you live longer. And I mean you, as in the grand royal you, but this culture of not talking about death, being afraid of it, and then saying, play it safe. And I think that's when you come to the table with this conversation, your your line of this deep love of life. Like death allows the realization of that. I'm convinced. Like I think it's the I think there's many other ways to come about that. But I think death is I think it's just an ever-present fear for most people, whether they want to admit it or not. I think most people are afraid of something. And I've said this a couple of times on here. I think I've said it poorly. But like if someone tells me that they're not afraid of death, but then the next second, you know, I ask them, Are you afraid of heights or snakes or whatever? And it's like, well, why are you afraid of that thing? Because you're worried it's gonna kill you. And so it's this unwillingness to look at death. And and I think when you do, it just kind of opens up the floodgates of like, oh wow, this is really special. This is really beautiful, this thing that I get to do. I need to take advantage of it somehow.

SPEAKER_03 25:49

Yeah, absolutely.

SPEAKER_01 25:50

And it feels like that's what you're doing. Like very much so.

SPEAKER_04 25:53

Oh, thank you. That's I try.

SPEAKER_03 25:55

I definitely try.

SPEAKER_01 25:56

Yeah, and I'm sure some days better than others.

SPEAKER_03 25:59

Yeah.

Learning Love Of Life Without Denial

SPEAKER_01 26:00

Do just keep on coming back to that line from the application of like, what gives you this deep love of life? I think there's so many people, a lot of people were given a diagonal and I'm sure there were times with the diagnosis that you're like, fuck this, this sucks. Um, I'm pissed, I'm annoyed, life is not fair, life is horrible. But how do you continue to come back to this kind of deep love of life?

SPEAKER_04 26:22

Yeah, absolutely. Um, I mean, I think first off, one of the things is that I do let myself scream into the abyss like this isn't fucking fair, and like why can't this happen to horrible people? Why does it have to like not that I'm goddamn Messiah or something, but like I'm not someone like actively taking away people's rights or something like that. It's like Yeah, we don't have to name names or someone Yeah, but like we all know what I'm taking up, or like someone who's like a child predator, or like something like you could make them suffer, like why me? Like an eight-year-old. So I think one of the things is that I definitely let myself have those moments because I think trying to almost like toxic positivity yourself is not yeah, you can't just shove that down. No, but I think the thing that gave me this incredible love for life is my family. I mean, my grandma is an incredible visual artist. I always get on her a little bit because I'm like, your work should be in a museum. And she's like, No, it's fine. I'm like, grandma, grandma.

SPEAKER_01 27:27

It sounds like you have a talented family.

SPEAKER_04 27:29

I do. I have an incredibly talented family. But my grandma is an incredible artist. And growing up I grew up with my mom and my grandma. That's who I've lived with before I I moved out. And um Yeah, it's just seeing how she I mean, we would go to gardens, we would go to beaches, we would I was outside so much of my life. Whether that was when I was really little, I would be in a stroller, or when I was older, I'd be in a wheelchair or using my cane or something like that. But I'd still always be outside. And just seeing the way she looks at the world, it made you appreciate like the way that leaf fell, or the way that this butterfly is landing on this milkweed, or this rock formation. We used to go to um there's a like little trail near where I live, and it had these beautiful rock formations. And some people walk past and be like, Oh, it's pretty. But you know, she would sit there and describe every color of these deep browns and reds and golden and just all of these things, and it makes you if you grow up with someone like that, you really appreciate how beautiful things are. And then my mom, I mean, she is my greatest inspiration. I mean, I think that she is the greatest person who's ever existed. And she is brilliant. She is a writer, she is afraid to publish, but trying to get her out of her shell there. But um, she is an incredible writer and she's an incredible storyteller. I mean, she used to tell me when I was really little, especially when I was sick, I would say, Mom, tell me a story about a Lego penguin, a bottle of perfume, and a flower. And she would she would do it.

SPEAKER_01 28:57

Oh, that's awesome.

SPEAKER_04 28:58

I remember one time it was the letter E, a ceiling fan, and an aquarium, and she had this whole thing. And so it was like, my grandmother taught me the beauty in reality, and she taught me the beauty in possibility. And I think with those things combined, and then me, I was always an incredibly observant child, and I've always been incredibly observant. I mean, my mom always jokes that she hates going to the movies without me because she misses things, and I'll be like, oh, that's the guy from this and da-da-da-da-da-da-da. But yeah, it's like I am incredibly observant, and then being taught by these two incredible women who are able to see so much rich vastness in the world has really given me this way of appreciating things, and I just feel like everything deserves to be appreciated. When I was really little, you know, people would laugh because everyone else's favorite animal was like a cat, and mine has always been a shark. I always I I love sharks. And one of the things that I love about them is that I feel so close to them because of how misunderstood they are. And I feel that way, you know. I have I have a pet millipede.

SPEAKER_01 30:04

I was about to say, if you have a pet shark, hold on. We uh I was like, whoa, whoa, whoa, whoa, hold on.

SPEAKER_04 30:10

That was so many unexpected twists and turns. No, I I have a pet millipede and I love insects and I rescued snails and spiders and everything else. And I just I truly do think that everything is a gorgeous creation. And I like my mom is the type of person that she one time said that she was late to like a high school class because she couldn't stop appreciating how the light was hitting this one tree.

SPEAKER_02 30:39

Oh, that's awesome.

SPEAKER_04 30:40

And it was like there's no one else to appreciate how beautiful this is. And I think being raised in that environment, I really became very, very appreciative of everything. And also like my mom has given so much to me. I mean, I'm the first person to go to college and haven't graduated yet, but I will be the first to graduate. And it's an incredible thing to be able to be like, she has given me so much.

SPEAKER_02 31:04

Yeah.

SPEAKER_04 31:04

And we don't have money, we don't have a lot, but it's like she always made there be a possibility. And I think that that really sparked my love of life. And then just growing up, seeing so many incredible people, so many incredible places. And yeah, it just really gave me that love of life that I carry with me.

SPEAKER_01 31:22

Yeah, it's I love this my job before, and this is not my job, but I was a photographer for a very long time. And so I love this idea of like stopping and seeing a tree and just being like, uh, you know, obsessed with how the light was hitting it. And the one thing that came to mind is just how rare that's becoming because when you're walking, and again, I mean the royal you, you're looking at your phone all the time. And I remember I took this class last year, it was just like a day-long like meditation retreat class, and it was on like the mindfulness of death. And she talked about how when you go to lunch during our like lunch break, she was like, I want you to like eat every piece of food like it was your last. And I ended up going for a walk instead. I was like, I'm not really hungry, I'm gonna go for a walk. And it was like the whole time I was walking, you know, didn't have music on, wasn't looking at my phone. I think I even left my phone at home. And I don't know, 20 seconds saying, This could be the last walk you ever go on. I did notice the light hitting the trees, and I felt the breeze and like the rustling of the leaves, you know, with the wind and and all these things. And it's like, wow, we really take so much for granted. And so I love that you have that perspective on life. Yeah, I love that so much. And I love that you have this family. That sounds so amazing.

SPEAKER_03 32:42

I love my family. They are, they they truly are.

SPEAKER_01 32:45

And I don't want to like, I don't know, make this like super emotional or anything, but what do you think about that? And I know you kind of mentioned their perspective on things of I think you said with both of them, I shouldn't have to bury my daughter, I shouldn't have to bury my granddaughter. Yeah. Like, what do you think about that, you know,

Guilt About Leaving People Behind

SPEAKER_01 33:00

from your perspective? Like that was from their side of things. Like, how do you feel about not being around anymore?

SPEAKER_04 33:05

Yeah, I mean, that's the big thing, right? Like there's something that a lot of people say when they're dying, that it's not that you're dying, it's that everyone and everything is. And I I think about that a lot. Like I get really scared a lot of the time. Like I get terrified of people, like I'm not scared of myself dying, yeah, but I'm terrified that someone else is because I constantly have that you almost have this grief for everyone. Like, it'll be my mom will go when I'm when I'm home for the summer, when when I was living at home, or even when it's if I'm home for like Christmas or something like that. She'll be like, Oh, I'm going to the grocery store. And in my brain, I'm like, okay, the grocery store is this far away, it's gonna take that. And then she'll be like 30 minutes late. And for those entire 30 minutes, I'm like, something happened, something happened, something happened. And every time I say goodbye to my grandma, I'm like, what if something happens? What if something happens? What if something happens? And it just runs over and over and over again. And there's also a point where it's like, not to be like, I'm the favorite child, but like, I'm the favorite child, though not to get too much into my family. If you knew my siblings, you would know why. But I was kind of the one that just clicked in my family. And I know how much my mom and my grandma incredibly love me. And that's I feel really guilty a lot of the time. Like when I'm especially when I'm doing things. I mean, like, as I've said, like I try not to let my disease stop me from doing things, but there's sometimes where I'll think, like, especially I was I was in a very, very demanding play this semester, and there were times where I was like, I can't breathe. Everything hurts, and I can't breathe. And I was like, I am treating my family's sanity for a fucking play.

SPEAKER_01 34:44

Yeah.

SPEAKER_04 34:45

Who am I to do that? And so there's a lot of like guilt that comes with it. And it's not just my family, it's like I have incredible friends, and it's like I'm gonna leave them, especially like my best friend of all time. Like, I say like all the time, like, I'm always gonna be here for you. Like when I went to college, she's younger than me, and I was like, I promise you, don't worry, I'm gonna be here, I'll always be here. And it's like, but I'm fucking lying. I'm not always gonna be here, and I also I have an incredibly amazing partner, and our song is always forever. And it's such a sweet song, but there's also and we'll say that to each other a lot. We'll be like, I love you, I love you, always forever. That's it'll be forever and for me, not forever for them. I'm a I'm a poet, and one of the poems I wrote when I first realized, oh, I'm like really in love with my partner was it was called hurt a soulmate. And one of the lines was, I say soulmate as if a dying girl has any right to a soul. Yeah, like I can I can get sad about things. And um I think that's the worst part about dying is that is that you realize you're gonna hurt everyone. And like I got really scared when I was in high school, especially about making friends. Like I've always had a lot of friends. I was prom queen, I was student government, like I was very, very public, but I almost always wanted to keep people in a distance. And I've always like my friends have been like, you talk about friendships, like they're very temporary. And I'm like, well, uh, I mean, they're not forever. Um, oh, I'm but there is a point where it's like I every single person that I become close to, every person that says, Oh, I love you, oh, you're such a good friend, I'm like, and that's another person I'm gonna hurt. And that goes on the list. Yeah. There's going to be a list of people who are going to sob and it's my fault, and there's nothing I can do about it. And that weighs really heavy on me a lot.

SPEAKER_01 36:42

And I think that's absolutely understandable. And I am no therapist, and I'm not trying to uh I know I'm not gonna solve any problems, but the two things that really come up for me there are it's again, it's this love of life that then continues to push you that allows you and like says, yeah, you know what, but it's still worth it. You know, it's still worth to have those connections. It's it's not creating this extreme fear in me to put people at an arm's length at all times because I could hurt someone. And it sucks that all these people will have extreme emotions, but there's also I don't want to say extreme emotions because that sounds like it's outlandish. They'll have very real, authentic like emotions that are are warranted, but that's the beautiful thing of like being able to love another person, whether it is romantically or friendships or whatever it is, like that is kind of the bargain that we all make, right? Is we love people and we lose people. Yeah. And that could, like we talked about, that could force you to live in, I don't know, I more of a metaphorical bubble of, you know, kind of keeping everybody at a distance. But you continue to go back to this thing of, like you said, from your mom and from your grandma, like this intense love of life because you see the beauty in it and you see the beauty in the connections with people. That's at least what I'm hearing. I'm not here to uh to analyze you or anything, but that's what I'm really getting from you. And I think that's really beautiful.

SPEAKER_03 38:07

Thank you.

SPEAKER_01 38:08

So I do have one last question that I normally ask any everybody, but I think before I ask that one, because you have such just an interesting perspective, and if there's nothing here, we can just kind of cut this part out. But is there something that you wish people knew? And I'm gonna leave it that broad.

SPEAKER_04 38:26

Yeah, yeah. There's

The Harm In You Look Fine

SPEAKER_04 38:27

I mean, there's like so much I want people to know. Because I think that terminal illness and honestly disability, like especially physical disability, just in general, is incredibly poorly represented, which is honestly one of the reasons I want to be an actor. I mean, I am an actor.

SPEAKER_02 38:42

Yeah. You're doing it. You're doing the damn thing.

SPEAKER_04 38:44

Yeah, I do the damn thing. I think the biggest thing is a lot of people will be like, well, you look fine today, or you were able to do this yesterday, or I heard this thing on Google about your disease, which means you're lying. And it's like, okay, so what? First off, like, just to say, just as a blanket statement, to lie about having a terminal illness is the craziest thing I've ever heard. Real fucked up. Several people play like, no, you're not, and I'm like, what the fuck? No, I think the biggest thing is like there's a very big misconception of what someone who's dying would look like or be like. Because we all imagine a Victorian child laying in bed pale with a handkerchief, coughing up blood. And it's like, that's tuberculosis. That's not everything.

SPEAKER_01 39:32

I would also say if you said, What does a person dying look like? They're also 70, 80, 90 years old, is the initial image, right?

SPEAKER_04 39:40

There is and I think that that's the biggest thing is that like, I don't know how to say this without sound very vain. I am a fairly like stereotypically attractive person. I am an actor, I am a model, I I'm pretty. Like, I wanna say that, but like there is something to be said about the fact that someone who's dying isn't gonna look well, I mean, sometimes they can, but a lot of times we're not gonna look like someone who's dying. Yeah. And we're not gonna act like someone who's dying. I'm doing quotation, Mark, you can't say it. But um, I guess the biggest thing I would want people to know is that I can be talking to you and laughing and having fun, and I am at an eight out of ten pain. And it's not that it's become because people will be like, oh, well, it becomes normal for you. Like, no, you don't get that doesn't you don't stop feeling it. It's just that you go, Well, I'm gonna push through this.

SPEAKER_02 40:29

Yeah.

SPEAKER_04 40:29

And so I think that's anything. Yeah, I don't, it's that's ex that is exactly the thing. It's like, what is the other option? We curl into a ball and scream, like that's not socially acceptable. Um That would be pretty great. Can you do that for me sometime soon?

SPEAKER_00 40:45

Just in public one time. Can you do that for me? And report back just curl into a ball in the middle of a room and start screaming.

SPEAKER_03 40:52

Yeah, maybe it hurts right now.

SPEAKER_04 40:56

Um I'm a bad influence, sorry. No, you're great. But I think that's the like biggest thing I would want people to know is that just because someone looks like they're doing great, or someone is like, oh yeah, I'm I'm I'm a little tired as my favorite words in the world, doesn't mean that that takes away everything they've been through. It means that they're so much stronger than you ever will know.

SPEAKER_02 41:20

Yeah.

SPEAKER_04 41:20

And I think that like that's the biggest thing. And especially like, I think it's majoritively media's fault. And also, like, most people don't talk about death. Yeah. So like no one knows who's dying. But yeah, I think that's it's big media thing of like, I must faint into my chair. And it's like, okay, like stop.

SPEAKER_01 41:39

Yeah, I get what you're saying, and I just try to live that across the board these days where you just don't know what someone else is going through. You don't know what kind of day that they're having, you don't know what's going on. And we all take everything so personally. And it's like, I think it's David Foster Wallace has like a whole speech, I think it's called This Is Water. And one of the things that he talks about is like, Oh, I know this is water. Yeah. And it's like someone cuts you off in in traffic and you get all angry and you're like, oh, this person, you know, they offended me, they hate me, whatever it is. You make up this whole story, and it's like, how do you know that they're not rushing to the hospital because someone's dying or their their wife or whatever, you know, something's going on, you know, someone's having a baby. There's so many things. And so we make so much of the world about us, which is totally understandable because our experience is ourself. But I don't know. I for me, it's just relieved so much pressure to just be like, I have no idea what kind of day that person's had, or week, or month, or life. I don't know. I think we just all need to like take a collective breath and just be like, yeah. And just be like, hey, you know what? This life thing, it's not easy. And we don't have to sit here and try to compare what's worse or what's better. Like, hey, let's just all be like kind of chill with each other. Is that is that acceptable?

SPEAKER_03 42:54

Yeah, right.

SPEAKER_01 42:54

Easier said than done. Yeah, I love that. I love that addition. I wanted to give you like a little space to say that. Is there anything else you want to say there before I I wrap up with a final question?

SPEAKER_04 43:03

So anyone listening, if you if someone in your life is being like, I'm terminally ill, never say the words, but you don't look sick because we all want to hit you a little bit. Especially like I spend like 30 minutes in the morning like putting on making it.

SPEAKER_01 43:20

Yeah, it's your goal is not to go out to look sick, be like, hey, everyone, you're sick. Yeah.

SPEAKER_04 43:26

No, no. It's like, no, I don't like I don't. This is this is a costume. In the great words of RuPaul, we're born naked and everything else is drag. This is drag.

SPEAKER_02 43:37

Yeah.

SPEAKER_04 43:37

Like this is not, oh my God. The funny thing I want to say is please don't say that. I think the other thing is like, in especially like in media and honestly in the world, but in media, like there is such an emphasis on disability and terminal illness being a plot point. And I think like my biggest thing is that if you are terminally ill, you are still Someone who is so vibrantly living, and you can fall in love and be sexy and fun and go to parties and also be incredibly studious and serious and you can live life. We're still people. Like there's nothing different. And so I think like that's the biggest thing is like anyone who's writing characters or anyone who has this view of like what we can and can't do. It's like, stop making us this one-dimensional plot point for every healthy person in a 10-mile radius to feel sad. It's like that's not that's not our point in life. And so it's like, and all these, and all these like weird preconceived notions. I mean, I've had people be like, oh, I'm sure terminally ill people and disabled people can't have sex. And I'm like, what? That's crazy. That's a crazy thing.

SPEAKER_00 44:46

Where'd you come up with that?

SPEAKER_04 44:48

Um what? Or it's like I remember someone was like, you go to parties? And I'm like, yeah. And they're like, you have had alcohol? And I'm like, yeah.

SPEAKER_01 44:57

I don't know why this is come coming to my mind, but it's almost like people have this like moment of I don't know what to do with my hands. Like, it's like I'm having a conversation with someone and I don't know what to do with my hands. It's like, just be normal.

SPEAKER_03 45:08

Yeah, just be normal.

SPEAKER_01 45:10

Yeah. Yeah.

SPEAKER_03 45:11

Just stop being so weird. Please stop being so weird.

SPEAKER_01 45:15

But also be like weird in like the good way, not the bad way. Like, don't conform and be like, do cool, weird stuff, not weird, awkward things.

SPEAKER_04 45:24

Not the weird where I feel like I need to call a trusted adult. And unfortunately, I am the trusted adult.

Wanting To Rest Without Shame

SPEAKER_01 45:30

Oh, so my last question for you what's one thing you still want to experience in this life?

SPEAKER_04 45:36

Oh my gosh. Everything. Um, I think honestly, the biggest thing I want to experience is I want to get to a point where I'm okay doing nothing for like a couple hours. So I am someone who I mean, I obviously I want to travel. I want to be a movie star. Like I want I want all that. I want the Glitzman's glam. But I'm someone who in high school I took nine classes. I was international baccalaureate, I was 4.5 GPA, technically Salutorian because me and someone else tied for Val Victorian. I got the speech, he took got the title. Um, but Val Victorian.

SPEAKER_00 46:16

But and let's be serious, you wanted that speech.

SPEAKER_04 46:19

I wanted that speech. Um, and I demolished that speech. I bet you did. I applied for 13 colleges, got into 12 of them, and now at a very prestigious university, and in five different volunteer organizations. Like I do a lot. Yeah I do a lot. I keep myself very, very busy.

SPEAKER_02 46:39

Yeah.

SPEAKER_04 46:39

And it's like I I've gone to incredible places. I've been so incredibly lucky to be able to travel and have all these experiences. But I think the one thing that I really want to get to a point in my life is where I could be like, you know what, today, sure, I might do a couple things, but then I'm gonna go home and sit by myself and do something and not feel like I'm wasting time.

SPEAKER_02 47:04

Yeah.

SPEAKER_04 47:04

I think that's the biggest thing that I want to accomplish before I die, is that I want to be in a point where it's like, no, I'm okay just existing. I don't have to pedal to the middle 24-7. Everything I do has doesn't have to be to get to the next thing. I can just be like, you know what? It's okay. I love reading. I I mentioned that at the beginning of this, but it's still like there's a part of me that's like, you spent 30 minutes reading, you could have spent 30 minutes applying to internships. And it's like, okay, but like we also need to have rest. And that's something like my partner has talked a lot about because they're someone who's very much like they bake in time in their day for them to do nothing. And I'm like, how, how, how? And they're like, you just let yourself breathe and rest. And I'm like, but like all the things you could be doing. And they're like, Yeah, but if I'm stressed, I'm not gonna do them well anyway. And I'm like, oh, damn, that's really true.

SPEAKER_01 47:55

You got a point there.

SPEAKER_03 47:56

Damn. I feel like you got me there.

SPEAKER_01 47:58

And of course, like I people probably hate me bringing this up all the time, but it's just a huge part of my life now. I think maybe what we need to do is just send you on a meditation retreat for like a week and just have you like sit and meditate and then and then maybe you come back and you're like, oh, you know what? I can take some time away.

SPEAKER_04 48:13

I'm gonna expose myself as a theater kid so bad right now. But in in the eternal worlds of Lin Man Well Miranda, I want to stop writing like I'm running out of time. Like I it's great, it's great to be passionate. I think everyone should do the hard thing, but I think at a certain point it's also like, I want to learn how to exist with myself. How do I just sit with myself and be like, it's okay?

SPEAKER_02 48:36

Yeah.

SPEAKER_04 48:37

It's okay. Not everything has to be perfect, not everything has to be the most incredible thing you've ever done. And I just really want to get to that place. Um, also, really want to go to Greece. That also would love to display that.

SPEAKER_01 48:50

I love the the throw that one in. Yeah, the juxtaposition of like, this isn't this isn't exactly what you said, but it's like, I want to find true internal peace and happiness, but also I want to go to Greece. So I I love that little little yeah, you couldn't leave Greece out. So but I just want to say I couldn't.

SPEAKER_03 49:06

I was like, Yeah.

SPEAKER_01 49:09

I just want to say thank you so much for being willing to do this. It was so much fun talking with you, like such a wonderful conversation. Yeah. And thank you so much. I feel like the moment that you do well, it's a two-parter. The minute that you either attain internal peace and happiness and and whatever or the minute you go to Greece, I want to hear about it. So and maybe it'll happen at the same time. Maybe it'll happen in Greece. Maybe that's where it all comes together. I don't know. Just putting it out there. But yeah, thank you so much. And yeah, I hope you have a good rest of your day.

SPEAKER_03 49:43

Thank you. Thank you so much.

SPEAKER_01 49:45

All right, take care.

SPEAKER_03 49:46

All right, you too. Bye.

Host Reflection And Ways To Join

SPEAKER_01 49:49

There's something this caller said that I keep coming back to that terminally ill people get turned into plot points. A device for everyone else's feelings. And this caller is just not that. They're so fully specifically themselves. They have opinions about books and sharks and musicals. They're in love, they're scared, they're funny, they're a person. And I think that's a good reminder that we really never know what someone else is carrying. Most people aren't waking up and announcing it. A breakup, a layoff, a terminal diagnosis. We show up, we laugh, we make plans because that's what you do. And those things don't define us, but they do shape us in ways that are worth paying attention to. I'm really grateful they wanted to have this conversation. It's personal a way that not everyone would be willing to share, and I don't take that lightly. On my end, I'm heading into a meditation retreat next week, so there won't be an episode. I went back and forth on this for a while, but part of it is just the added stress of trying to do another episode before I left. But honestly, the bigger part of it is that it never feels right to put out an episode when I'm not around to be present for it. These conversations deserve more than that, and I want to make sure I'm showing up in a way that's respectful to the callers. I'll be back the week after next. Thanks for listening to this episode of When We Dietalks. These conversations don't offer answers, but they do open space. Space to reflect, to feel less alone, and maybe to see things a little bit differently than before. If you'd like to explore your own beliefs out loud, you can apply to be an anonymous caller at WhenWeDietalks.com. And if a full call feels like too much, the voicemail is always open. Leave a message at 971-328-0864 and share whatever death has stirred in your life. Listener support truly helps keep this project going. If you'd like to support the podcast, you'll find a link in the show notes. And as always, please like, share, and follow. Every bit makes a difference. Until next time, have a good life.