If you have the “gift of precious time” in the face of a poor prognosis, here is a way to leave videos that are structured, organized, and developmentally supported for your children of any age. What might they want to know after you are gone? How can your voice continue to offer support and encouragement at transition points in their life? What can you leave behind that might impact their experience of grief and grieving? Su is both informative and insightful, carving a road that we might all look into. 

https://diewell.ca

Transcript:

Diane Hullet: Hi, I’m Diane Hullett, and you’re listening to the Best Life, Best Death podcast. Today, I’ve got a guest from Canada, and we were just chatting before we hit record about how she lives in Montreal. Welcome to Sue Park. Hi, Sue. Hi, Diane. I’m so 

Su Park: happy to be here, and thank you for 

Diane Hullet: having me. I’m really excited about this because Suze developed something that I think is really unique.

She is the founder of a company called DieWell, and the actual website is diewell. ca. And what it is, is it’s a quote unquote digital time capsule that preserves your presence in your child’s future. So, you know, tell us DieWell and how you got started on this. 

Su Park: Yeah, die. Well, I would love to share my story about how I got into this space at all.

And what made me create this is actually my mom had cancer, um, stage four cancer. Then she passed away last December. And when she was diagnosed, it was. for cancer. But like many families, we spend our energy into into her recovery. You know, anything my mom, she spent her energy with chemotherapies to get better.

We pour our energy into supporting her in any way we could. And during that time, of course, we didn’t think about death. We never talked about death, and it never crossed my mind that I should take my time to get to know this person better. So like asking questions like about her childhood, about her parents, about some memories that she has of us that she cherishes.

So it never crossed my mind. And I think part of it is Now that I’m thinking is because her diagnosis was such a major life event that I wanted to keep all other aspects of my life as steady as possible. So, so that’s what happened. And I only realized it when she was nearing death. And by the time it was too late, because When we’re not used to having these conversations early on, it becomes very difficult to even bring up these conversations.

So I ended up not having that closure, the conversations. And I think mom couldn’t either because she didn’t or couldn’t tell us how much she loved us one last time and seeing how fast she had to process that, how she couldn’t even verbalize her final wishes that really, um, marked this whole end of life experience.

So that’s the moment when I realized that I wanted to help patients die well. So that’s how this whole service or product got created. 

Diane Hullet: Yeah, 

Su Park: that’s, 

Diane Hullet: I think that is so, ah, I want to say it’s like not uncommon that when someone has a really difficult diagnosis like that, there’s this focus on what do we do?

How do we cure? How do we heal? Diving often into a medical field. That sometimes throws these kinds of conversations to the side or to the future, and I’m not going to get this quote correct, but Ellen Goodman, the founder of the conversation project is attributed with this quote, which is, You know, it, oh, I wish I had it right in front of me.

It’s, it’s like conversation. It always seems like it’s too early until it’s too late. And when it’s too late, it’s too late. And I think people sometimes think, oh, we’ve still got time. But even that last month when someone is dying, their focus is entirely different. I mean, it’s, it’s different for everyone.

I don’t, I shouldn’t generalize wildly, but there is not that much time. time, right? And when the final, when someone is really in the final throes of treatment or beginning the more active dying process, these conversations are not going to be top of mind for them. That’s not where they need to go. So how to do it upstream, how to do it at the beginning.

I sometimes think, you know, these kind of end of life conversations, if everybody thought of them as being important at transitions, right? So one transition is getting married. Like if you get married in your life, you should have this conversation. And maybe even before that is turning 18 or turning 21, having these conversations with your family, then maybe you get married, having these conversations.

Maybe you have a. A child having these conversations, for sure, a diagnosis, even if it’s a stage one cancer, mark that as a time to have a conversation, right? Because then these things, these memories, these things can get recorded and captured in some way. Cause you’re really talking about a legacy piece.

You’re really talking about. Both connecting with the voice and the image of the person, but what is their legacy? What are they leaving? So I, I just think that’s so beautiful. And we said it’s Die Well is a digital time capsule. Say a little bit about what is a digital time capsule? 

Su Park: So digital time capsule, first of all, a time capsule is a keepsake that holds messages, sometimes objects that are intended to be preserved for future generations.

But with digital, it’s simply in a digital format. So dive well Before going into what this product is, or this service is, I want to mention that Die Well Above All is about the mission. So our mission is to help patients with terminal illness die well. And our focus right now is parents with terminal illness, because that’s what, you know, with what happened to my mom, that’s what is close to our heart.

So we are really, our mission is to help these parents die well, knowing their children will have the strength, the confidence, and the support they need to move forward in life, that they will grow up knowing their parents. So in that way, Parents can feel reassured that they are fulfilling part of their responsibilities as parents.

So it is a digital capsule that guides them to leave these meaningful messages for their children. And as our first version of the app, because we’re always learning, we’re changing, it depends on what we uncover along the way. This first version of our app, we’ve partnered with child psychologists. And people who have lost their parents, so we came up with prompts that are critical or instrumental for a child’s healthy development and when coping with the parent’s illness or death, so that their messages can impact the children’s lives, not only the support, but really shape their future and parents can continue to contribute in that way.

So it’s almost like you 

Diane Hullet: worked with people who said, this is what grown children need to hear from their parents at different points or that kind of thing. So say, say a little bit more about, you know, you had your own experience to draw on, and then it sounds like you drew on the experience of other children who’d lost parents, I’m assuming, you know, meaning you talked to them as adults.

You’re not. saying to an eight year old, what did you need to hear? But rather you’re trying to create a service that would help that eight year old down the road. Are there specific sort of junctures that people, that, you know, advice or words from parents are helpful to hear? 

Su Park: Yes, I did a lot of research to heard many stories of these children and the very common would be the fact that they feel guilty about their loss.

And if I give my situation as an example, like, although I know that mom was happy to have me as a daughter. And she appreciated the time that we spent together in the back of my mind, I keep thinking of all those memories that the time that I made her sad. And so, to me, it would be very helpful to actually hear that from her, whether it’s in real life or videos, just hearing it from her how she feels.

would be a big comfort to me. And another example, a toddler who is a toddler would be from three, one to three years old. Sometimes they would ask questions like, why did mom leave me? Because they don’t understand what it is. They do understand that they’re gone and they can’t see them anymore, but they don’t understand what it entails.

And they might be asking these questions without necessarily asking it to the other parents. With Die Well, we have a prompt that parents can address that specific topic, so they can actually verbalize how they didn’t abandon them, how they still love them. And provide some stability, some love. Yes. 

Diane Hullet: Wow.

So if I’m the parent who, uh, has a terminal diagnosis and, and, you know, what’s, what’s so hard for people, I think to hold, how do I put this? Like Barbara Kearns calls it the preciousness of time, right? And that that’s precious time. It’s very difficult when you’ve received a terrible diagnosis to reframe that to say, This is actually precious time.

I actually know how I’m likely to die and I have some time before that happens. In that space of that quote unquote precious time, if you come to this service, it sounds like you have then a series of questions that I can look at and say, ah, which ones resonate with me to answer and which ones do I think would be helpful to my patient.

my child, whether it’s a young child, medium child, older child. And so then I’m crafting something that down the road they can listen to. And what I think is so interesting is I think that you know, it seems to me like people are either into something like this and they think it sounds fabulous or they’re like, Oh no, no, no, I’m not going to do something like that.

Do you have that experience with clients who come? 

Su Park: Yeah, for sure. I do have some, some people saying they love, first of all, the name Die Well. They love it. It’s so transparent. That’s what happens at the end of the life. So they’re very open to it. And some other people who are reluctant, I would say, to the idea of just filming this, because in a way, yes, it is preparing for your death.

And for. Patients, especially who might see that as something more imminent than a healthy person, could be triggering. So there are really different types of people, different reactions to it. But I think overall, those who are quite afraid of this idea, maybe they are also afraid of their mortality and maybe didn’t have the time to reflect on it.

Diane Hullet: Yeah. It seems like it would be directly connected to, ah, you know, if you’re still fighting, fighting, fighting to stay alive, then how do you say I won’t be here, so I’ll leave a message. Right. It’s it’s, and I, I always think like, how do we hold that and having not been in that situation, but how do we hold both of those?

How can you be fighting and have hope and also say. I want to leave this message just in case, but it’s a real conundrum. I think it’s a real mental and emotional kind of mashup to be able to do both of those. And how is this like, how is this different than a home video? Because I think, you know, well, some people do make a little, you know, they, they make a recording that they say, this is for you on your graduation from high school day or on your wedding day, or, you know, something I want you to hear down the road.

How does this service kind of encapsulate something different? 

Su Park: So the act of recording a message is the same. However, what we have in the app is we’ve created a system, a structure so that these parents are not lost in what they have to say. And something that I forgot to mention maybe is The messages or the prompts are divided into different categories of childhood.

So we have from toddler to teenagers to adulthood, we have in total six. So when parents leave a message, they can know what kind of topics should be addressed at what age. And for each stage of childhood, we briefly explain the key aspects. And so guiding them through how they should address these people or teenage years, how should you address an adolescence, it’s all different.

With that structure, and the fact that children when they view and when they access the content, they can easily filter through the messages, and really listen to content that speaks to them that It’s relevant to what they’re going through at that moment. So it makes the messages more impactful and the overall experience I would say, uh, is easier and we are here to guide them through the process so that they can leave beautiful but also impactful messages for their children.

Diane Hullet: Oh, I think that structure sounds incredibly helpful because you’re right, otherwise I’m just making a video saying I love you and hi and you know, thinking of you, I think, you know, wish we had more time together, but it’s not as structured as you say, kind of specific developmentally, that seems really, really powerful, like a, like a, like a real asset to this kind of work.

Some people write letters, some people prefer to write letters. Is that a piece of this or is yours really about video? 

Su Park: Right now it’s really about the video and we are in our developmental phase. So depending on what we uncover, what we learn from the patient. It will modify a little bit. However, for now it’s all video.

Yes. Yeah. 

Diane Hullet: Yeah. That makes sense. I think video is so powerful and I know friends who’ve lost really key people in their lives. One of the things they miss the most is the sound of the person’s voice. And I know friends have kept voice messages on their phone for years because they just want to hear that simple phone message from dad where he was saying, Hey, thinking of you kiddo.

Hope you have a good day. Bye. Love you, dad. And that’s all it was. But it’s so meaningful to the person to relisten to. 

Su Park: I remember right after mom passed, I was going through my phone, her phones, uh, videos. to try to find any videos. And luckily, I had some, which I just cherish it with my heart. And it’s very nice to see her face and her motion moving and her voice.

And I remember the time when my uncle accidentally found a video of her and we were just so excited because my cousin also had lost. her dad and he was in the video too. So we were just very excited to have that. And it’s a common thing, like you said, when children grow up and when memories start to fade, that’s one of the struggle that they go through.

They’re afraid, they’re so anxious to lose, to forget how they sounded, how they, The laugh, how they, you know, so. 

Diane Hullet: Yeah. It’s interesting too, for people listening, like, I could be wrong, but I’m, you know, I’m, I’m 59. And I almost think this is more relevant to people younger than me. In other words, like, I don’t know if myself or if people in an older generation are as attached to the video and the sounds.

Because I, I wasn’t, how do I want to say it’s like I, it’s just not part of my makeup the way it is for my daughters. I think my daughters are really tuned into videos and uh, we have some great funny, funny videos of them as kids. And one of my daughters put a series of videos and photos together for me for my birthday.

We all just laughed and laughed and laughed because it’s like the best of videos. So I think for them, for younger folks, this is even more relevant. So, you know, if you’re 70 and you’re thinking, Oh, you know, I don’t think my kids care if your kids are 40, I bet they care. I bet this matters to them. And so to kind of have this.

Organized way to help create it is is I think a really incredible service and you know, it’s interesting. You you do have kind of a niche focus. You’re not so much focusing on grandparents, for example, leaving messages. This is really parents with messages to kids. Say a little bit about why. Obviously, your own experience brought you there.

But why? Why was that so key for you? 

Su Park: So with that mission in mind or that aspiration that I wanted to help patients die well, terminally ill patients die well, I started my research to better understand the struggles or the journey of these patients. What I came to realize is that their concerns is not their own.

them. It’s not getting better, but it’s more the families, the people who are going to be left behind. And more specifically, the struggle is even greater when you have to leave a young children. So understanding that and uncovering that their focus is their families and just helping their family will ultimately also help them in return.

I’ve shifted my focus to children. So I think You know, we all have different struggles. But really, when you have to leave these children behind, who need that developmental figure who need a strong, solid parental figure, but just gone overnight is a very traumatic experience. And it’s it is a lifelong grieving journey for these children.

So I think helping that relationship, is also going to impact our society in a positive way by supporting their journey into becoming a resilient adult. And that’s, I think right now, um, that’s why we are focusing so much on this relationship. 

Diane Hullet: I think that that hits the nail on the head. And the fact that it’s die well, because what most people are doing at the end of life, if they’re able to, if they have time, if they have this precious time, they are, you know, looking at what is their legacy.

They’re looking at what are their relationships. They’re looking at how are the people they leave behind. So exactly everything you just said is what is most important to them. And so to kind of have this way of leaving legacy in this very concrete way, that’s guided by some developmental professionals you’ve talked with about what people might need to hear.

I just think I think this is tremendous. I’m so happy to, you know, you came into my world because of Amy Yannick, another end of life educator. And Amy said, I can reach out to Sue Park. She’s got this really interesting project. And I think what you’re doing is, you know, it’s good for families. It’s good for the person dying so that they can die well, knowing that these things are left.

And it’s so good, as you said, for the people who remain behind and their sense of security and connection that goes beyond death. Yeah. Yeah, so sums it up. You’ve got a beautiful line on your website that I want to read. You say, Leaving messages for your child is like planting seeds in a garden you might not see fully bloom, but those seeds will fill the garden with flowers and trees you Long after you’re gone, just like your words and wisdom will continue to nurture and support your child as they grow.

I think that’s a beautiful metaphor for how to think of this. We, we don’t want to leave, we don’t want to end this early, but how might we leave seeds behind that help that next generation in particular? This is also relevant to families and friends and siblings and parents who might be the ones losing their adult child.

This is also relevant to to a terminal illness, but particularly touching the children. 

Su Park: Yes. And I really think that it’s about preparing for the worst, but hoping for the best. And you will know, you know, that these messages are going to keep nurturing your child and help them become an adult that carries your values and your wisdom.

Uh, and. I spoke to my English teacher this morning, and he is Canadian, but from Middle East. And he said that one of their tradition is to with father or with a parent and a child to plant a palm tree together. And that’s their legacy. And it’s almost to say that One day I might not be here, but you will know by looking at this tree that I am here in spirit with you.

Diane Hullet: Wow, that’s a beautiful tradition. It strikes me again that the challenge with this is people facing their mortality. And that, that is, you know, that’s the work I try to do is to say to people by facing your mortality, then you can do incredible things like leave this legacy gift. Then you can do things like make amends in whatever way that means forgive yourself.

Forgive others. And that shapes your experience of dying and people’s experience of grieving you. But it all comes down to this in your face thing of can you face the fact that you’re going to die? And that is just, wow. Talk about the human dilemma, right? I think that’s why I find this work so interesting.

It’s just It’s so, so hard and it’s so theoretical until it’s not and until there really is a terminal diagnosis. I mean, again, today we’re mostly talking about a death where there’s some time, there’s some knowledge ahead of time, but that’s, that’s, that’s the rub. Can you face that in such a way that it impacts what you leave behind because you’re willing to take a look at it?

I’ll be so curious, you know, in five years. How many people have taken advantage of this kind of service and stepped into it? 

Su Park: Right, right. And, uh, one thing is some people might say, Oh, well, I’d rather focus on today. Right. I’d rather live well. And the difference that I was thinking, reflecting on it, and I feel like when you think of how can I die well, as a by product, you also end up living every day fully.

But only thinking about how can I make today better? It doesn’t mean it’s going to prepare you for that time. And we only really have one destiny. We, we’re gonna die. And so there’s a slight difference in, in those two terms. I really encourage people to think about it because I know when I started to do that, I was very overwhelmed.

It was heavy on my chest, but it’s been a couple of months that I am really reflecting on mortality. And it changed me in a way that I really want to live my life fully. And I stopped Netflix. I, uh, work out more. There’s little like those changes that I made because I want to die well, and I want to live my life fully and die with grace.

Yeah. 

Diane Hullet: Yeah. So well put. Oh my gosh. Well, how can people find out more about your service? 

Su Park: We have a website, so diewell. ca. You can always have more information there. Otherwise, I am reachable on LinkedIn. I am very active on LinkedIn, so you can just type my name, Sue Park, and I’ll be there. 

Diane Hullet: Beautiful. Thank you so much, Sue.

I’ll be finding you on LinkedIn. And it’s Sue Park, S U and then P A R K. Yes. DieWell. ca. Thank you so much for joining me today. I’m, I’m moved by how you took your own story and turned it into a service for others. Thank you so much. As always, you can find out about the work I do at Best Life. Best death.com.

You’ve been listening to the Best Life Best Death podcast. Thanks so much for listening.