Anonymous #29 — Can Having Parkinson's Teach You How to Live?

This caller grew up without religion, lost their mom to suicide at 13, and spent years in a fear of death so overwhelming they couldn't be around skeletons or eat meat. Then they were diagnosed with Parkinson's disease.

But somehow, this is not a sad episode.

This week's caller is funny, sharp, and genuinely at peace — not because life got easier, but because they stopped waiting for it to. We talk about what it actually felt like to go from debilitating death anxiety to building a community, writing a book, and strapping roller skates back on at 46 after a hip replacement. We talk about what a Parkinson's diagnosis changed, and what it quietly gave them. And they say something near the end of the call that I've been thinking about since: that they're just glitter. That glitter sticks to everything and you can't get rid of it no matter how hard you try.

In this conversation:

• What death anxiety actually felt like — before a diagnosis put it in perspective
• Losing their mom to suicide at 13, and how that fear lived inside them for decades
• Finding purpose through Parkinson's — and why they call it a "terribly wonderful gift"
• Hope vs. belief: how they hold both, especially when it comes to their mom
• Being a single parent of four kids (two grown, two teenagers) while living with a progressive disease
• Dark humor, living intentionally, and not caring who watches you dance in the rain
• What they still want to do before they're done — and why it's simpler than you'd expect

A few lines from the call:

• "I guess I'll have to embrace this. So I did."
• "Your hundred percent today looks different than your hundred percent yesterday."
• "We're all just meat and electric jelly when it breaks down to it."

Book Recommendation: Tuesdays with Morrie by Mitch Albom

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.

Transcript

Cold Open And Show Premise

SPEAKER_00 0:00

And that's at some point I got more comfortable since I've been diagnosed with Parkinson's and I I I'm pretty much like immersed in the Parkinson's community online, stuff like that. You get more comfortable with the concept of of dying because uh so many people do end up with, you know, other Parkinsonisms which are worse. Ask like luckily I don't have that. And then you get comfortable with that, unfortunately, because like you start losing your friends and you're like, well shit, you know, uh I guess I'll have to embrace this.

SPEAKER_01 0:28

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: Mnemostheny Story Recording

SPEAKER_01 1:01

This episode is supported by Nemostheny, a project I've been building alongside this podcast. Nemostheny 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 keepstake you can share with the people you love or keep for yourself. If you want to learn more, you can find it at mnemostheny.com. That's N-E-M-O-S-E-N.com.

Episode 50 And Caller Preview

SPEAKER_01 1:40

Hey, welcome back or welcome here if this is your first time. At this point, it's probably pretty obvious that there was no episode last week. My dog Jackson got really sick, and for a few days I honestly didn't know if I was gonna have to make a really hard decision. He's okay now, but it was one of those weeks that just takes over. You know how that is. And it's pretty amazing to say that this is episode 50. That's fifty conversations about death. Some of those being the early episodes with friends and people I had met early on. But more than half of the episodes now are this anonymous format where I've sat down with over sixty strangers who are willing to talk about the thing most people spend their whole lives avoiding. I don't want to gloss that over. This project has meant a lot to me. And the fact that you're still here, that means a lot too. But the caller on this one kind of feels like the right person to land on for fifty. They've lost a lot, they've carried a lot, they lost their mom young in a really painful way, raised four kids largely on their own, and then got a Parkinson's diagnosis in their forties, which sounds like the kind of thing that would break a person, but ended up cracking something open instead. They talk about going from a full-on, debilitating fear of death to something that actually looks like peace, like real true peace. They're pretty clear about not being into toxic positivity. More like when your timeline speeds up, you stop waiting for permission to live. And they've done a lot of living, built a whole community, written a book, found love, picked up roller skating again after a hip replacement, and so many other things. At one point they describe themselves as glitter. And I know that probably sounds a little strange without any context, but the way they explain it, resilient, impossible to get rid of, showing up in places you didn't expect years later. It kind of sticks with you. All right, I'm glad to be back. Let's get into the call. I hope you enjoy.

Trauma And Parkinson’s Shift Death Fear

SPEAKER_01 3:38

Hey, how's it going? Oh, it's good. How are you? I'm doing pretty good. It's a sunny day here in Portland, so I can't complain too much.

SPEAKER_00 3:46

Wonderful. I miss the sun so much, it's not even funny.

SPEAKER_01 3:50

Well, hopefully uh it'll get sunny soon. But yeah, I just want to thank you for being willing to do this. I know it's a little bit of a strange request of a random stranger asking people to jump on the phone with him to talk about death. So I'm I'm very grateful that you're willing to do that. And maybe and maybe to to kind of just kick things off a little bit just to kind of get some context. Again, you know, this is a topic that a lot of people don't like to talk about. It's a topic that people avoid. And so maybe briefly you could just let me know why you even wanted to to do this call.

SPEAKER_00 4:21

It's kind of interesting because like that's something that scared me for the longest time. Like I had this huge fear of death to the point where like in I think like 2006, 2007, I had like a breakdown and I couldn't even eat meat or like see skeletons. Like I was I was claiming all the time about like my yeah, like impending doom and stuff like that.

SPEAKER_02 4:38

Yeah.

SPEAKER_00 4:39

But it was all from trauma. I lost my mom when I was thirteen. She she committed suicide. So, you know, that's pretty much where it came from and that's that fear that I was going to lose where I accomplished where I Yeah, I just wanted to, you know, leave my mark. And that's at some point I got more comfortable since I've been diagnosed with Parkinson and I I you know I'm I'm pretty much like immersed in the Parkinson community online, stuff like that. You get more comfortable with the concept of of dying because uh so many people do um end up with, you know, other Parkinsonisms which are worse. Uh luckily I don't have that. And then you get comfortable with that, unfortunately, because like you start losing your friends and you're like, well shit, you know, uh I guess I'll have to embrace this. So I did and I started thinking about what it meant to me and and now I I talk about it whenever people are comfortable.

SPEAKER_01 5:29

Awesome.

SPEAKER_00 5:30

I love and comfortable.

SPEAKER_01 5:31

Yeah, I love this kind of like full circle thing for you of I don't want to put words in your mouth, but almost like it sounds almost debilitating fear of death.

SPEAKER_02 5:40

Oh yeah.

SPEAKER_01 5:41

To now to come around and talking about it. So I love that you've been able to kind of work through that fear and get to a place where you're more comfortable about it. And I'm excited, I feel like you have set the stage with a lot of elements that sound very, very interesting to dive into. And I have been very, very excited to chat with you. So I'm excited to get into

A Book That Brought Peace

SPEAKER_01 6:01

that. But maybe before we kind of fully jump into the conversation, of course, this is anonymous and kind of keeping with that theme a little bit, but maybe just like you can give me an idea, or I guess I already know, but give the caller or listeners an idea of where you're calling from and then your favorite book and why.

SPEAKER_00 6:20

Oh, that's a hard one. My favorite book. No, actually I do have a favorite book, and ironically, it's two Jason Morey.

SPEAKER_01 6:26

Oh nice, awesome.

SPEAKER_00 6:27

Oh gosh. So it fits right in, doesn't it?

SPEAKER_01 6:30

It does. And is there a reason why you love it?

SPEAKER_00 6:33

Because it was something again, it was like I don't usually read sad things. Someone recommended it to me when I was going through that same situation, and um they were like, It'll help you come to terms with things, and it really did. It really was enlightening. And and I cried and cried and cried when I read that. I've read it several times since then, and I couldn't recommend recommend that book or anything by Metch album more to people who are looking for something to uplift them from a bad frame of mind or or a bad spot, you know.

SPEAKER_01 7:04

So I yeah, I love I love that ironic. I've been told I should read it multiple times. It's on my list. I say that every time someone recommends a book because I just have this really long book list. And so this is probably a question that I should stop asking because it's making my reading list really challenging. But I've heard such amazing things about the book and to know a little bit about your story before of going through this full cycle. Like you have painted a beautiful picture of this book and how it it maybe can help me, you know, further. So I think again, I say this all the time, but I'm gonna move it up on my list because it sounds like kind of what I need right now.

SPEAKER_00 7:42

I highly recommend it because it's you know, it's the true story and it's you know, it's his experience with his college professor and what they do to learn about what people think about the professor before he's passed away and and to give him peace is just it's so kind. And to learn that there's such kindness in this world is something that I I think I really needed. And um it changed my perspective of a lot of things. So it when I got diagnosed, I had a um a better outlook at some point than I did before diagnosed.

SPEAKER_01 8:12

So we always need we always need more reminders, right? That the world is kind and caring because we are constantly inundated that the world is evil and people are evil and angry and hateful. So I love that that's kind of the general message behind it. I'm gonna jump you back because you did skip one of the questions. Oh no, you're totally good. You're just you know, you're just mixing it up on me. You're keeping me on my toes. Um, where are you calling from or where do you live? You know, roughly like maybe city-state.

SPEAKER_00 8:40

I live in I'm like near Allentown, Pennsylvania. Like it's a little tiny town with like a thousand people called Bexelsville.

SPEAKER_02 8:47

Like nice.

SPEAKER_00 8:48

Um, it's just a very quaint kind of old farm country sort of place.

SPEAKER_01 8:53

Nice.

SPEAKER_00 8:53

Um, I I love it here. We live in an old farmhouse, it's beautiful.

SPEAKER_01 8:57

Well, again, I'm so grateful to have you on the show. I'm excited to dive into this, so maybe we can just start with the question of what do you think happens when we die?

Afterlife Beliefs And Reincarnation

SPEAKER_00 9:06

You know, I I don't have a background, a religious background. Like I wasn't baptized, I wasn't raised in the church. My mom kind of found religion before she passed away in in 1988, but it wasn't for me. Like I was thirteen, I was the angstiest kid in the world, you know. I I just wanted my my hair band and I didn't want anything to do with God or Jesus or anything. And and I've not really found my way to that, you know, at all. Like religion just doesn't be told what to think is just not something that I vibe with. And and they don't do that in the church. But you know, having that chosen for me, I went to ashrams and and synagogues and churches and all sorts of different connotations of Christianity and and the Jewish faith and Buddhism. And when it comes down to it, like my belief is that you know, we're we're we're kind of anchored here. I'd like to think that our souls are free after we pass and they find another place to rest. They don't carry the pain of remembering what they've lost. Just the joy of it. Because babies are born with such joy. And where does it come from? You know, and they bring such joy and all that wraps-up joy I I think that was in that soul to begin with, that just is set free. And that's probably what I'd like to believe more than I actually believe. But I've seen and experienced things in my life that just have no explanation.

SPEAKER_02 10:24

Yeah.

SPEAKER_00 10:24

And it's given me a face that's come from that face of like, well, how the hell did this happen?

SPEAKER_02 10:32

Yeah. Yeah.

SPEAKER_00 10:33

So I do believe that you know, we are anchored here by the memories of the people that we love. And when they're ready, maybe they let us go and then we're able to come forward. I I believe in the concept of reincarnation because I don't feel like I've only lived 50 years in my life. I feel like I've lived longer.

SPEAKER_01 10:49

So much wiser.

SPEAKER_00 10:51

Right? Like you have those moments of deja vu where you're like, what is this? Why do I feel like I remember this? And and it's just the most nonsensical thing.

SPEAKER_02 10:58

Yeah.

SPEAKER_00 10:58

I don't know. It's just a weird spiritual thing.

SPEAKER_02 11:01

Yeah.

SPEAKER_00 11:02

And the, you know, odd experiences in life kind of just led me to think, you know, there's something more out

Purpose Found Through Diagnosis

SPEAKER_00 11:07

there.

SPEAKER_01 11:07

Yeah. And it's at this point of the conversation that I'm like, I have so many questions because you introduced multiple different ways that I could go with this. And maybe I'll start with the reincarnation idea because it's one that I find fascinating. Do you think that there's then a purpose of this? Or like, are we just in this like loop of we keep coming back, or is there like lessons to be learned? How do you see kind of that whole thing playing out? Is there, you know, is there an end a little bit more on that?

SPEAKER_00 11:36

Maybe we're able to be leave when or at least others would get peace of it for of us leaving when we've achieved our purpose. But you know, I remember having that breakdown and thinking to myself, like, this can't be all my life is. Like, this can't be my purpose. I I'm here for something more. There has to be more than just this. And I did find my purpose because in being diagnosed with Parkinson's, I started using my Instagram as like a like an online journal because like I had like six people on them and they were like most of them were old coworkers, you know? Yeah, uh which is cool. But you know, I didn't really have a lot of people, so I was like, Oh no one's gonna read this. But they they did. People started reading and they started reaching out and we started talking and I made friends and I met I've met people from multiple countries and spoken to groups and and volunteered for organizations and I've written a book and I've done a podcast and hey, I have a blog and blah blah blah. You've done it all.

SPEAKER_01 12:29

I don't want to say you've done it all, but you've done a lot. Yeah, that's amazing.

SPEAKER_00 12:32

Right. And like I never would have done any of that if like I would have just been me, which was which was fine. Yeah. I was happy with myself. But I did things, I've accomplished things that I wanted to accomplish and it's only through this terribly wonderful gift of time and space and like not having to work and and and being medically retired, which you know, it sounds horrible, but when it comes down to it, like I I take my kids to school every day, you know. It's you work through it, Parkinson's, you just work through it. Like you can live with this. So yeah. I spend my time teaching people that you can live with this, and and I've had the gift of so much feedback that I I've been able to affect lives in a positive way, and I think that's a beautiful thing. Yeah. And I found my purpose, and that's to me, that's amazing.

SPEAKER_01 13:20

It is amazing. It's absolutely amazing. And I think this is maybe like a blunt way of saying it, but like, you know, this diagnosis, this acknowledgement of it is facing death, of like having a clearer idea of it. And so I love that you have had that feeling, you know, that really like overwhelming feeling, because that's that's why I started this. And so I love talking to people like you who have that feeling, but I love that then you get introduced this diagnosis that could break you, that could do all these really negative things. And I think a lot of people would think that it would do all these negative things, but it like you said it yourself, it was a gift in a way, like it allowed you to share you with the world and really connect with people. And I think that is, you know, death is a really scary thing because it's so unknown and and whatnot. But I do think there are because we avoid talking about it and because it's kind of gotten pushed aside, there are so many gifts that come from just even paying attention to it, to acknowledging that it it does exist, it does happen. And you are probably more well aware than than most people or anybody that things get shaken up and you just kind of have to roll with the punches, and it feels like you have rolled and like I don't know, like bloomed or blossomed and like done all these amazing things.

SPEAKER_00 14:46

It has kind of worked that way.

Parkinson’s Reality Without Toxic Positivity

SPEAKER_00 14:48

Like it's not all sunshine and roses. Yeah, living with this incurable, you know, uh a neurodegenerative disease. Like it's going to it's going to advance. It has advanced, you know, and I've had I've had brain stimulation implanted and and I've you know, I've done all the things, I've tried all the medications, blah, blah, blah. And I do what I need to do. I do the exercise, I do the workouts because exercise is the only disease modifying therapy for Parkinson's right now. And the medicine sucks. Like it it sucks. We've had the same stuff since 1967. Like, come on. So, like, there's not a lot out there that you can do, and it will put you in a negative mind frame. And I don't like toxic positivity, like, I don't like having that down people's throat.

SPEAKER_02 15:26

Yeah.

SPEAKER_00 15:27

But I I give the reality of the situation is like you can sit here and you can lament the fact that you have this disease, or you can get up and you can say, like, okay, well, maybe it it kicked my butt yesterday, but today it's that's not gonna happen. You take back your time and your space and and in having it, it allows you to realize that the days are short and life is short, and like if you don't do that thing now, you're not gonna do it.

SPEAKER_02 15:53

Yeah, absolutely.

SPEAKER_00 15:54

And you know what? If people laugh at you, who cares? And if you look like a weirdo, who cares? I have made the cringiest TikTok videos you have ever seen and posted them at my age, you know, because now that I've turned 50 this year, I I feel the need for some unknown reason to tell everyone I'm 50 years old and blah blah blah.

SPEAKER_02 16:14

And TikToking, yeah.

SPEAKER_00 16:17

Yeah, like it's a gift from the universe. Everywhere that I've gone, the universe has told me, it has shown me my people, you know, like and these are my people. These these these this group of shaky, you know, quakey people is are so funny and acerbic, you know, they have this acerbic humor and this dark humor, and it's just it's beautiful. Like it's it's absurdly beautiful.

SPEAKER_01 16:40

I feel like that's the thing that I've come across a lot is the dark humor that comes up in these conversations. And I'm just on the other side of a lot of these conversations, some of them incredibly tragic, but there's always some laughter because there kind of has to be. Yeah. You I and I think I think with a diagnosis like this or just anything that really puts death in the forefront of your life, I don't know if it flattens or it like compresses, but time becomes a much different thing and you recognize how fragile things can be. And like you said, yesterday wasn't a good day. Maybe today will be. I don't know. And it is like we hear the carpe diem and and you know, all these kind of like cliche things. But when you do kind of look at it, it's like, hey, you know what, that's true. And and all I can do is take today and and see what happens and hopefully it's better. And maybe it's not. Maybe I'm gonna have I'm gonna have symptoms today that are worse than they were yesterday. And I thought yesterday was bad, but today's worse. But you just kind of take it day by day, I assume. And I think that's what all of us are doing, right? And it's it puts things in a different perspective.

SPEAKER_00 17:52

Most most definitely. It's sometimes you have to you have to carpe tomorrow. Like you could you could see everything tomorrow, but today it's just not happening.

SPEAKER_01 18:02

Yeah, it's not gonna work today.

SPEAKER_00 18:03

And then you have to accept that. Like your hundred percent looks different today than your hundred percent looked yesterday. Yeah. And that's just it's it's like my my friend is known for saying, like, hey, I tell people all the time, she give me the gift of this quote that like sometimes it just be like that.

SPEAKER_02 18:18

Yeah.

SPEAKER_00 18:18

And sometimes it is it does. Like, that's just the only it's it's just it is what it is.

SPEAKER_01 18:23

Yeah.

SPEAKER_00 18:23

It's just the more contemporary version of it is what it is.

SPEAKER_01 18:26

Yeah, absolutely.

SPEAKER_00 18:27

You have to find your your peace in in in suffering. Yeah, and that comes with its own grave process. And and I think that's in a way that's allowed me to accept the the concept of death better than I did when I was younger, and I was terrified of it. Yeah, I know that I I I have lived through this disease, and I know that I will. So then what what now?

SPEAKER_01 18:50

Yeah. Yeah, I'm curious.

SPEAKER_00 18:52

I I haven't been broken yet.

SPEAKER_01 18:54

Yeah. I'm curious about maybe like the timeline

Diagnosis Timeline And Treatments

SPEAKER_01 18:57

of things. You obviously talked about being petrified of death, and then how long ago did you get this diagnosis? And like how did that intermingle with the initial fears and then now this acceptance through this diagnosis?

SPEAKER_00 19:12

I think I kept those fears for a long time, you know. And I have four kids and I had them very young. I had a terrible marriage, and then after I got divorced, I had a terrible relationship. I actually had a beautiful relationship with somebody who was a complete liar. So I ended up raising the last two pretty much from conception, and that's a whole nother story. Um, which I would do that no one has time for. Um that's another podcast, right? Right, like maybe maybe it'll be a follow-up. So, like I've been a single parent for the last it's been almost 20 years.

SPEAKER_02 19:45

Wow.

SPEAKER_00 19:45

So and my youngest two are 12 and 16. Well, sorry, my youngest one just turned 13, my bad. So my two are 13 and 16, and and it's hard being a single parent. So there's no break. Yeah, it's like I I'm I'm on there like 25, 8. It's me, me, me, me, me, and that's it. So and and I don't regret it because like it's been a whole different experience than my oldest two. My oldest two kids are um 32 and 33.

SPEAKER_02 20:11

Okay.

SPEAKER_00 20:12

So it's it's just such a a huge difference. But really, like you'd think with that trap it worked it somehow, it works out. I don't know. Maybe I'm better at this than I thought.

SPEAKER_02 20:20

Yeah.

SPEAKER_00 20:21

So my youngest one, I started having motor symptoms from Parsons after my youngest was born. And like I said, it's to remind me like she's 13. They were weird, you know, like like kind of like a narcolepsy, and then like a couple of weird um things, like I fall asleep and my eyes got tired, and I kind of just chalked it up to being a single parent, being tired, hadn't just given birth, had me my body's tired.

SPEAKER_01 20:42

Valid valid thoughts.

SPEAKER_00 20:45

And then and I got that tremor, and I said, Okay, this isn't good, you know, like this is something this is neurological. And I followed the yellow brick road through doctors and stuff, and they thought it was MS.

SPEAKER_01 20:57

Okay.

SPEAKER_00 20:57

And when it's it's like it was MS.

SPEAKER_01 21:00

Is that a uh common first assumption? I feel like I'm yeah, yeah, yeah, yeah.

SPEAKER_00 21:05

For for women, because women present differently with Parkinson's than men, and there's less women with Parkinson's than there are men. So for me it was, you know, MS was really made more sense because I did have a history of that in my family. My paternal grandfather, my dad's dad had Parkinson's disease. But oddly enough, since I've been diagnosed, they have changed the reasons for Parkinson's being so prevalent, and only 13% is considered genetic.

SPEAKER_02 21:33

Oh, interesting.

SPEAKER_00 21:34

And the rest is environmental. So it is an environmental disease that's come from our water and just like um paraclot and and petrochemicals and things like that. So I want, you know, my big fat chest. Um the government is gonna be calling me another one. Um but like who needs restitution at this point? I just wanna live.

SPEAKER_01 21:54

Yeah, you just wanna live.

SPEAKER_00 21:56

It worked better.

SPEAKER_01 21:56

Yeah, you don't wanna be you don't wanna be fighting in courts and stuff, you wanna be living, yeah. Totally.

SPEAKER_00 22:00

Like we're all tired, you know, people with Parkinson's. Like we're all jacked doing all this exercise, but we're tired, you know, like in the shaking jacked but tired. I like that. Like I'm the I'm the naughtest, hottest person in the world. I still fit in a bikini. Come on. That's that's how it goes.

SPEAKER_01 22:22

I like it.

SPEAKER_00 22:23

Uh so like I I I think I got off the beaten track. No, you're okay. Redirect me. Where were we going with that?

SPEAKER_01 22:29

I think just uh I mean you've set the stage a little bit of timeline, but yeah, so how does this play into maybe kind of the death anxiety?

SPEAKER_00 22:36

So first symptoms, you know, uh the death anxiety came before that. Death anxiety came about 2006, and so then my diagnosis didn't come. My first symptoms came at the end of 2016. I lost my job when I told my boss that I thought I had MS and he fired me. Oh, for some half-ass reason kind of thing. And then I didn't have insurance. So it took me four years to get fully diagnosed. Well I got diagnosed during COVID in twenty twenty because I was at work because I was a store manager. I worked in retail and my store closed. It went out of business. Ironically, right before COVID hit.

SPEAKER_01 23:12

What a story.

SPEAKER_00 23:13

I was at work after COVID, yeah. And I got diagnosed with Parkinson's um in August of twenty twenty. So this August will be my six year uh diagnosed version.

SPEAKER_02 23:22

Wow.

SPEAKER_00 23:22

Which we don't celebrate. Um my kids just and my kids and I just take a picture of us all giving the middle finger to uh Parkinson's.

SPEAKER_01 23:28

That that seems like a good way to celebrate.

SPEAKER_00 23:31

But it was it was kind of devastating in a way because I knew something was wrong. And I didn't expect the doctor to diagnose me that day because I had already been to one neurologist before um I had lost my insurance or at the movement disorder specialist.

SPEAKER_02 23:44

Yeah.

SPEAKER_00 23:45

So this neurologist, he just he was, you know, old school and he diagnosed me clinically just based on my tremors and my walk, my gait, stuff like that. And he said, you know, if you want to have another MRI, that's fine, but I don't think it's gonna change anything. I would like you to take this pill and if it works, then we have our answers.

SPEAKER_01 24:04

Then we know, yeah.

SPEAKER_00 24:04

And it'll be okay. You know, he's like, I've been doing this thirty-five years and I'm telling you it's gonna be alright. He's like, There's lots of stuff on the horizon. And he was right, you know, I got I That'd be really nice to hear in that moment for sure. And Yeah, and it's uh it's there are so many things out there that can help you or you can use to help yourself. And that's another thing that that I focus on doing is trying to spread information whenever I can to other people so that they know that these therapies are out there and that you know it's not as scary as you think. M my biggest fear in life after after death was brain surgery, and I had that in January. So, like, yeah, and and I'm I'm like a hundred times better than I was.

SPEAKER_01 24:46

Oh, that's awesome.

SPEAKER_00 24:47

So, like, I mean I I'm kind of like a half cyborg, but that's cool.

SPEAKER_01 24:53

You're just ahead of the rest of us.

SPEAKER_00 24:55

Right? Like if if they could just put the filters on like permanently, that'd be cool. You know, I am 50. Hello girl out.

SPEAKER_01 25:03

That's amazing.

SPEAKER_00 25:04

So it's like my timeline set up when I got diagnosed.

Living Intentionally As A Mom

SPEAKER_00 25:07

Like everything just seemed to come faster.

SPEAKER_02 25:10

Yeah.

SPEAKER_00 25:10

So I went out and I found love and I moved closer to the person that I love, and then I moved away because I was afraid and I was sick and I didn't want to burden anybody.

SPEAKER_02 25:22

Yeah.

SPEAKER_00 25:22

And then I moved back and found my love again and we're very happy, and my children were very happy and awesome. We go out and we do the things, and I I care nothing about looking like the weirdest person in the room because I'm which is so awesome.

SPEAKER_01 25:40

Yeah. I think that's we need more weird people. That's one of those benefits of looking at death, whether it is like really being faced with it or just contemplating it. And I mean, I I definitely still like I wouldn't be dancing in the streets or anything, but there's so much that has dropped away of worrying about what other people think, and this is finite. And so why am I so worried what everybody else is thinking, especially when everybody else is worried what everybody else is thinking? Nobody's worried, nobody's actually thinking about you. Yeah, nobody's nobody's that focused on you in a really wonderful way.

SPEAKER_00 26:18

And like the other people that are around, like they don't care what you're doing. They'll be like, Oh, look at this, this weird girl like dancing in the rain. I don't care, it's fine with me.

SPEAKER_01 26:27

Yeah, as long as you're enjoying it, yeah, that's what matters.

SPEAKER_00 26:30

But when I was 20, I would have been like, Oh my god, I can't do this.

SPEAKER_01 26:34

Yeah.

SPEAKER_00 26:34

But I at 45, 46, 47, I strapped my roller skates back on that I, you know, similar ones to I had when I was a kid, and I used to roller skate after school, and I I took my kids to skating rinks and taught them how to skate, and that's our favorite thing to do. Like, who who picks up roller skating again at 46 years old? But I was determined to do it. And I I cried like a baby. Like, I cried like a baby. I was like, Oh my god, I have skateboard. I had just had hip replacement surgery, and I was like, Yeah, look at this.

SPEAKER_01 27:03

It is so amazing. Yeah, it's so amazing to find those things or like re find those things, right? That brought us so much joy as children that then and I don't want to say that just like get beaten out of us, but just like life happens and the world happens, and you grow up and you think that, oh, I need to be, you know, serious and I needed to do these things, and it's finding joy in those those things that really brought you joy as a kid when it didn't matter or it was to have fun. And I'm glad that you've like rediscovered that again. And I think that is when you look at things through the lens of of death, that it's just that this is temporary. Whether you know, even if we reincarnate, it's gonna be different, you know, it's it's not gonna be the same. And so yeah, so you get this. This is what you get. I am curious, because you brought it up a couple times. What is this experience like being a mom? And especially to two that are young, you know, that are still teenagers. Yeah, they're teenagers. They're like in a really, really interesting time in life.

SPEAKER_00 28:07

You know, how is one is neurospicy? My youngest one is neurospicy in psychological autism lab a year and a half ago, almost two years ago.

SPEAKER_01 28:16

I love that phrase.

SPEAKER_00 28:17

Yeah, I do. I think it's whoever created that was it's so wonderful because she really is like the most surprising, amazing, little like sunshiny little human being in the entire world. And like I honestly believe that she was put here on the surf to like teach me how to find joy in everything because that's what she does. And it's it's she's so clever and funny and like sarcastic because I'm so wonderful. So there's there's really no there's no way around that. But but she has learned the way. And it's just so cool like being her mom and being and being all their moms and just having that experience of parenting my own way. It's such a blessing to you know live life differently and know that um like this kid is gonna be all right because she's talented beyond compare. I feel like Austin is a is kind of like a superpower in in a lot of ways.

SPEAKER_01 29:12

Yeah, absolutely.

SPEAKER_00 29:13

Some of it is a gift.

SPEAKER_01 29:14

Yeah.

SPEAKER_00 29:15

So it's been really it's been a cool experience.

SPEAKER_01 29:17

I think a lot of people would look at the situation and be like, wow, you've got this terrible diagnosis, and like that's horrible, and that's probably affecting your family in really horrible ways and all doom and gloom, right? But it's providing you this like presence, right? To be and for them to also notice that presence, especially in a world that is so distracted, it seems like you're really able to be with them and experience life with them. That's such a powerful message that they will be such great humans and adults and all these things because of the parent that you're able to be. And I hope so. Yeah, I I I would think so. I I mean, I don't know anything. I'm just a weird, you know, stranger from Portland, Oregon, but I just keep coming back to the statement that you made really early on about the gift of the diagnosis.

Glitter Hope And Final Questions

SPEAKER_01 30:08

And I I also should say, I think we hear about these diagnoses through television, through movies, but we don't hear about them. I mean, I think you're doing it on social media, right? Like we we might get exposed to it on social media if we are the right algorithm.

SPEAKER_00 30:25

Exactly.

SPEAKER_01 30:25

If you are like my algorithm at this point, because the only Instagram that I have or use is for this project. I get a lot of death stuff, which I think is great. You know, it's it's it's aligned with what I want. And I'm sure you get a lot of stuff about Parkinson's and probably stuff. I mean, you found me, so it's you probably get some stuff about death. But for the for the majority of people, how we see these things is through a storytelling lens of a TV show, of a movie. And I think that's why, and I was really excited to talk to you. I've I had um it was before I did the anonymous format, I had an interview with a a guy who has ALS. And that was such a powerful episode too, because we don't get to hear those stories and those experiences from people. Yeah, I don't I don't necessarily have a question there, but yeah, you speak to that.

SPEAKER_00 31:16

Yeah, you know, like it uh because of Parkinson's, like I can't even do scroll because the constant dopamine hit, like it makes me feel weird. So like I have to put my phone away because I feel it start to feel like I start to feel sick. So like I can't even do that, which is like that's good. I was I was kind of like a phone addict for a while, you know. It's hard not to be in this world. Stop working, yeah. Because everything is right there at your fingertips. So, like, and we're part of that like media oriented generation. Yeah. So like this is how we learn things and this is a good thing.

SPEAKER_01 31:49

And it's how we connect, right?

SPEAKER_00 31:51

Yeah, but like I've I've learned a ton of great things and I've been able to focus more on art. You know, I've I've learned how to watercolor. I've never watercolored, like, where did that even come from? Yeah, you know, I've learned more about neuroscience, which is absolutely fascinating, and I could nerd out for hours over that. You know, I've learned about grief and how it how it's a process and how it applies to my life. I've learned about joy and how that's a process and how it applies to my life. And I've found that like there's so much joy in this life that you can share with others that like I like to tell people that I'm just glitter, and they say, Oh, don't put yourself down. And I'm like, No, you don't understand. Like, glitter is resilient, it sticks to everything. Yeah, like you have glitter today, you're gonna have it 20 years from now, you're gonna have it, you're gonna find it in next generation. Like, glitter is it's a goat. Like, it you can't get rid of it no matter how hard you try.

SPEAKER_01 32:45

You cannot, you cannot. It is it's just about as permanent as it can be in this lifetime.

SPEAKER_00 32:51

Listen, I I sent my ex a glitter bomb once back in the day when I was not a very nice person, and and he just found out recently and he was like, That was you, I'm still finding glitter in my toolbox. And I was like, You're welcome.

SPEAKER_01 33:04

You're welcome. Totally. Oh, that's amazing. So early on in the conversation, I was like, I have so many questions, and we dovetailed off way off on one end, and that's kind of why I asked that first question because I felt like I could bring this one back in and it wouldn't feel as strange. But one of the things that you said very, very early on in the conversation, I think you said soul, and how that kind of continues on in a way, and then you kind of like subtly drop something that was like, well, that's what I hope happens, but I'm not sure if that's what I believe. And maybe it wasn't quite that way, but it was kind of this like hope and belief. How does that coexist in your world now?

SPEAKER_00 33:44

I think that it's like my hope, I think, feeds my belief, and then vice versa. You know, because I I do believe that I will navigate myself through this through this illness with some sort of success, maybe not a hundred percent, but you know, I'll get through and I'll get what I want whether I have to believe it or not.

SPEAKER_02 34:04

Yeah.

SPEAKER_00 34:05

Um, but my hope is that it's easier. So without that hope that it's going to get better, I cannot maintain the belief that it will.

SPEAKER_02 34:16

Yeah.

SPEAKER_00 34:16

So like you have to kind of believe and hope and hope to believe because that's just how it is. And it's the same way with uh life after death, you know. Like, I kinda hope my mom is watching me and I kinda hope she has had the gift of seeing like what I've done. But I also hope that she's gone and and she's in a better place because you know, most people don't end their life because they're happy with the way that things have gone.

SPEAKER_02 34:42

Yeah.

SPEAKER_00 34:42

If she's had a second chance, that would be a beautiful, beautiful gift to all of us.

SPEAKER_02 34:47

Yeah.

SPEAKER_00 34:47

And and I'd like to believe that because, like I said, babies are born with such joy.

SPEAKER_02 34:52

Yeah.

SPEAKER_00 34:52

That joy has to come from somewhere because you hear a baby laugh and everybody laughs. I don't care if you're the crotchest, crotchidiest, old curmudgeon in the entire world. You're gonna see that baby and you're gonna laugh.

SPEAKER_02 35:02

Yeah, just pure joy.

SPEAKER_00 35:04

All the time I'm like, I see a baby and I'm like, oh my gosh, my uterus just switched. And I hold my kids tied, so I'm not having any more kids. But a baby will make me want one like nothing else in the world. Because they're just so beautiful and and and you know, and just full of light and happiness. And I mean, yeah, they cry a lot and they poop a lot, but like no one cares because they're so damn cute.

SPEAKER_01 35:26

Yeah, that's just part of the process. Like we just talked about. It can't just all be good. There has to be, you know, there has to be a balance. And so you have all this joy, and then you you got a lot of poop, you know. It's just, you know.

SPEAKER_00 35:37

Sometimes with rainbows come unicorn farts. That's just the way it is. That's just the way it is.

SPEAKER_01 35:42

Absolutely. Well, I do have one last question for you. I feel like we're gonna have to do another call at some point because there was we didn't even talk about your mom at all. And I think there's probably a lot, you know, there, and I'd love to talk about that at some point. But I feel like if we start there, we're gonna we're gonna talk for another hour and then I'm not sure gonna cut it all together. So maybe we'll have to talk again. But what's one thing you still want to experience in this lifetime?

SPEAKER_00 36:06

Oh gosh. I actually have always been very horrible at doing things in public, like public speaking and stuff like that, or going in front of groups. So it's gonna be a it's gonna be like a toss between like public karaoke or which is because I love to sing and I do all right, or just like kind of give a speech because like I failed uh all that through school because I was like, I knew the stuff, I knew what I wouldn't we needed to say, and I'd get up there and just shake and shake and shake, and I'm like, maybe that's preparing me for this. But I'm like, But do prepare me for public speaking, that's for sure. Like I missed out on that skill. So I definitely would like to do that at some point.

SPEAKER_02 36:44

Yeah.

SPEAKER_00 36:45

And after that, like like I'm good. Like I have I have very simple needs. I just want to hang out and be happy and smile and laugh and and eat good food.

SPEAKER_01 36:53

Yeah.

SPEAKER_00 36:53

That's that.

SPEAKER_01 36:54

Hey, always eat good food.

SPEAKER_00 36:56

Food is love.

SPEAKER_01 36:57

Yeah, that is the interesting thing with this question, especially in these situations of the people that I've talked to who are going through, you know, a diagnosis or their loved one has a diagnosis. Again, it kind of feels like it speeds up life in a way, I guess in some ways, literally, but that awareness of life and death, you live more intentionally. And so it always seems to be the people that are kind of really in the thick of it have a very clear response to that question, have a pretty quick response to it. And yeah, outside of that, I've kind of, you know, I've experienced a lot of things, I've done a lot of things, I've been living my life really intentionally lately. And so there's not this big long list of things. And so, yeah, it feels like you're living very intentionally. What did you say? You've built an online community through Instagram, you've written a book.

SPEAKER_02 37:50

Yeah.

SPEAKER_01 37:50

You're I'm I'm I'm saying it now. Maybe you'll do like a TED talk. Maybe we need to get you on a TED talk. That'll be the way that you're not gonna be on a TED talk. I don't know, I don't have any connections with them at all.

SPEAKER_00 38:01

I applied, but I applied, but like they were like they they've I just keep applying. I'm just gonna keep applying until they get tired of hearing of well I've applied like four or five times already.

SPEAKER_01 38:10

I'll apply for you too. I'll I'll I'll shout the message out and and who knows, maybe this will result in something. You never know, but you never know. Yeah, I am so so grateful and so thankful that you were willing to do this. Thank you. Um, I was very excited when I saw your application come through.

SPEAKER_00 38:28

I was excited, I forgot all about it, and I was like, oh my god, this is so cool. And everyone's like, You're gonna talk about death, and I was like, you don't understand.

SPEAKER_01 38:35

You don't, you know, it's yeah, you're not cool enough to understand yet, but you you will at some point. Uh good.

SPEAKER_00 38:41

I keep sending out your podcast to people like I'm like, just listen to it, just listen to it. Like it's it's it's it's actually like it's not what you think it is. It's not sad, it's it's it's life affirming. Like it's not it's the opposite of what you think it is.

SPEAKER_01 38:54

Absolutely.

SPEAKER_00 38:55

Yeah, and that's that's what I like about it.

SPEAKER_01 38:56

That might be the hard really cool idea. Thank you. I think that's one of the the hardest parts about this is when I tell people it's about death, there is the immediate, oh gosh, that's gotta be scary, that's gotta be morbid, that's gotta be heavy, all these things. And I'm constantly like, it's not even and there are some episodes that are absolutely devastating. But again, like I said earlier, like we're laughing still. Like it's still there's there's joy. And I really I think over the last couple of weeks I've realized that this is about death, but this is really about, you know, you you are a real human telling a real story about your life and what you're experiencing. And so yeah, I'm glad that you were willing to lend your voice to the project and yeah, to share your story because this is something that I think people need to hear. And so, yeah, I think I'm so grateful that you're willing to do it.

SPEAKER_00 39:52

Well, thanks for having me because this is this is super fun.

SPEAKER_01 39:55

Yeah.

SPEAKER_00 39:55

Kind of weird, but you know, I don't know. It's like weird to say, but but I don't think it's that weird, you know. Like it's it's always the spectrum of death is always there for everybody. Like we're all just meet, that's the way it is. You know, totally an electric jelly when it breaks down to it. So, like we're not gonna be here forever, like we're organic beings, but but then by the same right, like facing it in this way, I think, is is just it's just again so life affirming. So it's just it's been a very cool experiment.

SPEAKER_01 40:19

Yeah. Well, I'm so glad, and we'll definitely have to stay in touch and somehow we're gonna get you on on TED Talks or or something equivalent, and then you know, then I'll be able to watch that and be super excited. But again, thank you so much, and yeah, I hope you have a good rest of your day.

SPEAKER_00 40:36

Oh, you too.

SPEAKER_01 40:37

All right, take care. Bye. Bye.

Closing Break And Listener Invites

SPEAKER_01 40:40

There's something about talking to someone who generally has been through it, the fear, the loss, the diagnosis, all of it. And comes out the other side not pretending any of it was easy, but also not broken by it. That's not common. And it doesn't happen by accident. The glitter thing is gonna stick with me, which I guess is exactly the point. The idea that what you put into the world doesn't disappear. It just shows up somewhere else later in ways you didn't plan. I think that's what the caller has been doing for years without necessarily calling it that. Before I let you go, no new episode next week. I'm taking a little spring break, spending some time with family, and I know that's two weeks this month with no episode, and I'm sorry about that. Jackson situation aside, I just need a little bit of a reset. We'll be back with another episode around the end of the month. I'm playing around with moving the show to Tuesdays, so it might land on the 31st instead of the first. Either way, keep an eye out. Thank you for being here for 50 of these. Genuinely, it means the world to me. Thanks for listening to this episode of When We Die Talks. 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.