Ep 232 Katie Prentiss | The Slow Goodbye: Mother Loss with Frontotemporal Dementia

 

SHOW NOTES SUMMARY:

This week, I sit down with Katie Prentiss, a filmmaker, actress, and caregiver who transformed her most profound loss into a powerful creative mission. Katie shares her raw and inspiring journey of caring for her mother through frontotemporal dementia (FTD), a challenging form of dementia that impacts personality and communication far differently than traditional memory-loss conditions.

At the age of 62, Katie’s mother, Maggie, passed away from FTD. Through our conversation, we follow Maggie’s transition from caregiver to actress and the filmmaking of her debut film, “Wake Up Maggie,” hoping to raise awareness about dementia and caregiving.

Katie beautifully describes grief as a “slow goodbye.” She shares transformative perspectives, saying that grief doesn’t have to have the final word and that facing fear can become a pathway to clarity and purpose. And, my favorite: the sun is always shining above the clouds, even when we can’t see it.

Katie has had to learn how to embrace life fully, knowing the genetic uncertainty of FTD, following the diagnosis of another family member. But she’s already learned how creative expression is a healing outlet and the importance of viewing midlife as an unraveling.

Key Takeaways:

  • Understanding the unique challenges of frontotemporal dementia.
  • The emotional landscape of caregiving for a parent with a progressive illness.
  • How grief can be a catalyst for personal transformation.
  • The power of creative expression in processing loss.

RESOURCES:

CONNECT WITH KATIE:

Turning Grief into Purpose: Katie Prentiss on Caregiving, Loss, and Creativity

Grief has a way of reshaping our lives, often in ways we never expected. In this episode of Grieving Voices, we had the privilege of speaking with Katie Prentiss, a woman whose journey through loss led her to an entirely new path—one filled with purpose, creativity, and advocacy.

A Caregiver’s Heart

Katie’s story is one of love, resilience, and transformation. When her mother was diagnosed with Frontotemporal Dementia (FTD), Katie became her caregiver, navigating the challenges of watching a loved one change in ways she never imagined. As many caregivers can relate, the journey was heartbreaking yet deeply meaningful. It was a season of grief that began long before her mother’s passing—a slow goodbye filled with love, frustration, and moments of bittersweet connection.

The Unexpected Path to Filmmaking

While immersed in caregiving, Katie found solace in creativity. She soon realized that sharing stories—especially those of caregivers—was a powerful way to bring awareness and healing to others. This led her to a surprising new direction: filmmaking.

Her short film, Front Porches, captures the raw and emotional experience of caregiving, giving voice to the silent struggles that so many face. The film has received recognition and praise, serving as a beacon of hope for those feeling unseen in their caregiving journey. Now, with her upcoming project, Wake Up Maggie, Katie continues to use storytelling as a means of shedding light on the complexities of dementia and the deep love that endures through it all.

Finding Purpose Through Grief

Katie’s journey is a testament to the resilience of the human spirit. Grief, while heavy and painful, can also be a catalyst for change. It can open doors we never anticipated, guiding us toward healing in ways we never imagined.

Through her work, Katie not only honors her mother’s legacy but also creates a space for others to feel understood and validated. Her story is a reminder that even in loss, there is room for new beginnings.

Listen to the Full Episode

If you or someone you know has been touched by dementia or the challenges of caregiving, this episode is a must-listen. Katie’s words will inspire you to find healing in unexpected places and remind you that your grief has a purpose.

🎧 Tune in now to Grieving Voices and hear Katie’s powerful story. Let her journey encourage you to embrace your own path of healing and transformation.

Episode Transcription: 

Victoria: Hello. Hello. Welcome to Grieving Voices. Today, my guest is Katie Prentiss. She is the mother of four who was running a successful photography business when her mother was diagnosed with frontal temporal dementia, and she became her full time caregiver. Seeing firsthand how short life truly can be, Katie embarked on a mid life career pivot into acting, Katie’s second career began on the fast track by landing the first role She auditioned for in a feature film. Since that amazing opportunity, she added writer, director, and producer to her growing creative resume with the creation of her first award winning short film front porches. Acting has been a life changing occupation for Katie, allowing her to dive more deeply into the stories of others with empathy and understanding. Katie was has written a feature length film called Wakeup Meggie, a coming of age film written as a love letter to caregivers raising Dementia Awareness. Wake up Maggie is currently in preproduction and is being created by a female led production team in film crew. Katie has been featured on remember me, second act actors and more. Thank you so much for being my guests today.

Victoria: And thank you for sharing me, sharing an aspect of grief that hasn’t been talked about. I might have had one other guest who spoke on dementia, but not the frontal lobe dementia, which tends to my own understanding just because someone within my community was diagnosed very young in early fifties. Yeah. And so I believe it tends to develop at a younger age. Is that correct?

Katie: That is correct. It is the most common form of dementia under the age of sixty five.

Victoria: And so how old was your mom? Well, first of all, let’s was her name?

Katie: Maggie Maggie Hanson? Yeah. Okay. Yeah. My mom

Victoria: was when she was diagnosed then.

Katie: Yeah. My mom was sixty two when we officially got the diagnosis. The tricky thing with front or temporal dementia, FTD is that it can often take an average of three and a half years to get an accurate diagnosis. So often people are showing symptoms like early signs without the family knowing or without anyone knowing what it is or what’s going on. So I look back and think she definitely have symptoms like in her fifties.
For sure.

Victoria: Can you share what some of those things that were that you noticed as a family?

Katie: Sure. Well, I should say that frontotemporal dementia definitely affects someone’s personality. It’s less of a memory type of dementia, and it’s more of like personality, compulsion control. For my mom, in particular, it was speech, like language. She had primary progressive aphasias that she lost her ability to to communicate. But early on, it was my mom definitely had some shifts in personality, but we we also had a lot of life stuff happened with her. She had a massive car wreck when I was in college. She my parents went through a divorce when right about within those few years. So there was a lot of circumstantial change in her life, and it was easy to rationalize everything we saw as, oh, this is just mom now that she lives alone. Like, no one’s telling her to, like, stop obsessively recycling things. You know? Like, my mom would have just recycling containers stacked up really high. She also, like, was compulsively order like, ordering and clothing online, like, way more than one person could use. She was definitely felt victim to, like, some scams. Like, she signed up for, like, a phone and alarm system in her home. She definitely, like, had some color saying that they wanted to marry her and she fell into this like scam relationship where she sent someone money. But the biggest clue for us was that she started having delusions. And at first, the delusions felt somewhat based in reality, like, very explainable for us. Like, so she said, oh, there is a man and a son in my backyard. And I’m like, well, who? But, you know, in your rational mind, you’re thinking, oh, there’s probably like a child that that got away from their parents or something and they just went in the backyard and then left. But the delusions started getting more extreme and less realistic. So we knew that something was up at that point.

Victoria: And you’re also a mother of four.

Katie: Yeah.

Victoria: So and and I’m I’m also curious if you have siblings because I know you you became her caregiver No. But were your children young? Yeah. That was all that?

Katie: Yeah. It was a journey. So I am the middle child of three. I have an older brother and a younger sister, and they’re both wonderful humans like involved. And my extended my family all lived in Georgia at this point and my personal family was living in Oregon and we still are. When this was going on, again, like, there were signs and things going on with mom that we’d be like, that’s crazy. Like, she got lost going home. That’s that’s wild. Like but then once her delusions or her visions of things that she saw or felt were happening became more crazy. Like, she gave a story about a man and a woman who climbed up onto her roof and dug a hole in her roof. Like, she really believed they were, like, going into her attic through her roof. And it was so sad because I just want, like, it just sounds like she’s scared to live alone. Like, she thinks, like, everyone’s coming to her house. But but anyways, at that point, I talked to my sister and I said, I feel like maybe something’s wrong with her meds or like something’s off. Like, she’s just sharing some crazy stories. And we decided my sister took her to a psychiatrist. To see if there was something some sort of answer they could give us. And the psychiatrist appointment, they basically said, okay, your mom has a delusional disorder. She cannot drive and she cannot live alone. Like starting now. And so we were just like, wait, what? All of us had young kids at this point in our thirties. So my sister being closer in location to my mom. I mean, we were both like, well, she can come with us. It’s great. Like, in a way, it was like, well, mom’s really helpful to have around and, you know, she’s a grandma and, like, she’ll it is kinda nice to have an extra set of adult hands. And so my sister and I kinda joked about, like, I’ll take her. No. I’ll take her. And then she ended up moving in with my sister and her family.
And this was, like, late fall of that year. And my I remember saying to my sister, like, let’s just get through the holidays, like, just have mom for an extended visit through the holidays, and then we can talk about what we wanna do, like, in a more permanent way. But they they settled in with mom. She lived there almost three years with them. If I if I do the math right, I think it was right around three and she was living there her symptoms and and disease was progressing and she was getting more tricky to manage. I wasn’t, you know, in the weeds with them. They were handling so much stuff like, you know, moving her out of her house, selling her house eventually, like, all of those logistics of caring for someone. And then they got to their end of feeling able to maintain her care needs And at that point, I felt like I can’t tolerate having my mom go into a nursing home in Georgia, like across the country from me. So I felt like I wanted her to come live with us and talked with my husband and we made the decision to make we’re out to Oregon. And so mom lived here her last two and a half, almost three years of her life with us. So she lived with us in our home for about less than a year and then we had to put her into a nursing home and then a memory care home to be able to handle her needs because it was so advanced. So it was a journey. It was a long journey of trying to figure out how to care for her well. In those years.

Victoria: I think that’s probably I mean, I I’ve just seen it. Mhmm. And so and working I worked in a nursing home, had a memory care, but it is and it can be a very long disease.

Katie: Yeah.

Victoria: And I think that is probably one of would you say that create one of the aspects of it that creates a lot of complicated feelings

Katie: Absolutely. Absolutely because it’s like you’re mourning your person that’s right in front of you. You know that they’re on their decline and that death is going to come for them through this it’s usually secondary causes through this case, which is super frustrating. But I remember feeling really afraid of how long mom might live with this. Because you just you start to project out and envision the future, and it’s it’s this, like, rapid decline of them losing well, for us, it was all her personality, all her ability to talk. She became, like, The only way I can describe it is like it would be like a severely autistic person where the ability to communicate is just gone and you’re like, know that they’re in there, but you want to be able to reach in and have some sort of semblance of interaction with them, found myself envious of people with Alzheimer’s because I thought, yeah, they’re repeating their story and they don’t remember you, but, like, at least they can talk to you. Like, I felt like I just would have given anything to talk to her. To just, like, hear her say something or tell me the same story or, you know, let’s let’s, you know, have that conversation about who I am not to, like, diminish anyone else’s suffering or pain with that. But it is very complicated. It’s complicated and that you don’t want it to last a really long time. It’s complicated that you feel like you’re grieving them while they’re still there in front of you. I called it the slow goodbye. I know people call it the long goodbye. But yeah, it’s just it’s yeah. It’s just a a difficult walk for sure.

Victoria: How did you explain this to your kids? I mean, because you’re a caregiver to children too Yeah. Managing their emotions. Yeah. And bringing a parent into the home, I imagine has a different impact on your marriage too.
And Absolutely. A lot of layers.

Katie: Yeah. Absolutely. I mean, our kids I would say, I’m trying to remember exactly how old they were. I think our oldest was, like, maybe just started middle school and then our youngest was in kindergarten, first grade. I can’t remember.
And I would say for the youngest, it was, like, easy because I found him to be the easiest to bring around mom because he would just hug her and, you know, bop away and then come back and hug her again and just like how children can be so present. And and and what is and not, you know, given to, like, the fear, the imagination of what could be. And then the odor we get, the more we live in those spaces of not being present and you know, constantly fearing the worst and stuff. But my older kids I mean, it’s it’s funny because I think I was in such crisis management mode. I don’t know if I did a very good job of explaining anything to them. But I was trying to do my best to model love and care and acceptance like this is what we do. We take care of family. We love the person in front of us. Even though they’re difficult, but I probably was naive in what I assumed they were absorbing. It’s so easy to assume kids aren’t. Absorbing as much and they always are. They’re so much smarter than we give them credit for. Mister Rogers was so good at that. Right? Like acknowledging that in children. But I remember my kids would have, like, writing assignments and they’d they’d bring them home and it would be, like, a poem and it would be about my mom, about Mimi living with us. And I thought, oh my gosh, wow. They’re so deeply processing. So I think that they I definitely felt my children’s attention and care toward me. Is their mom watching me, like, be in this grief? And we just did our very best to, like, support mom, but also, like, give our family time in nurture. And that was the hardest challenge is, like, doing both, like, having just our family time and not feeling guilty about that. And then also trying to take care of mom. So it was a lot like having her in our home. Her needs were really even in the very beginning of her moving in.
Her needs were probably more advanced in what we could handle and we tried. So what did you learn about grief or know about grief?

Victoria: I mean, because you had experienced your parents’ divorce Mhmm. And But had grief been a topic that was talked about growing up? And how do you feel how how do you feel this experience has changed? How you look at grief now? And how you parent.

Katie: Yeah. I grief. Wow. I don’t know. I definitely had a taste of grief with the divorce for sure that such I remember just feeling like, wow, that really, like, shifted my identity in a way that, like it’s like everything I’ve known myself to be and known myself to be a part of down feels like fragmented. And Even in that, I notice, like, oh, people who have been through it, get it, and know that it’s hard. Whereas grief is so tricky, like, when you haven’t experienced a like grief, it’s harder to enter in with people’s suffering or pain or hold space for that because you just feel like I think, especially, okay, going back to the divorce, I think it’s such commonplace almost and in our culture that people are like, oh, sorry. You know, it’s kinda like, oh, that’s hard. Okay. Sorry. And whereas I was, like, processing this whole, like, identity and how do I deal with all of this stuff? I think the thing with mom I you know, that was the most obviously, it’s the most profound grief I’ve ever been through in my life. I think when I was in it, I felt very isolated from people really understanding what it was like because so like we even talked about earlier in this podcast, I think so many people understand Alzheimer’s or some type of dementia, but I felt so young and so confused by mom’s behaviors in the way she was exhibiting symptoms. I felt misunderstood in a lot of ways I remember, periodically, I would post something on social media and share, like, a couple sentences about losing her as a person and dementia sucks. And then I would find someone whose loved one also had a t d or who were going through something similar and I remember feeling like, wow, why does this feel so helpful even though it changes nothing? It just feels so helpful to know that you’re actually not alone in the exact scenario you’re in. So I learned that in that in those moments, I learned that sharing our story is incredibly powerful and that even though we can feel so isolated and alone, that can really help with with some of those feelings. And then, obviously, with the grief, like, the deeper grief of of her actual death and that loss, I learned so much. I learned that we all experience our grief so differently from each other. And I think the really interesting thing is that even in a sibling group or even when you’re grieving the exact same person that you feel like you know in a very similar or same ish way, you will process it differently. And I notice very early on that sometimes the people you think you’ll be able to have, like, intimacy and grieving with, you might not be able to have that. And I also notice how easy it is to compare your grief to other people, vice versa, and how unhelpful that is. So if someone’s sobbing and you feel like stone cold like dried up, it’s easy for one to think the other is silly or whatever, but it’s not helpful. So that was those lessons were incredibly profound in the early stages of losing mom of, like, oh, we’re all gonna do this differently. It does nothing to compare. It does nothing to serve us to compare or contrast. And, you know, you may not be able to share your grief with people who you think you might be able to share your grief with. The other thing that I realized that I think a lot of people probably know of experience grief is that it shows up when it wants to show up. It’s a non invited guest. I I’m always like, this is now my lifelong companion. Don’t really wanna walk with her, but I will be. And it’s something that I just have to let, like, show up and move through. And and yeah. And just it does change through years, but it’s not that loss is always there. The loss of a person that you love or the loss of a dream that you had or yeah, that loss of future that you expected. It’s just it’s like always gonna be there. So and I’m still learning. I I think the other lesson now I’m like eight years out of losing my mom. And I always I think a lot about how it doesn’t have to end with grief. Like, grief doesn’t get to have the final word. And that’s the other thing I’ve learned. It’s like, yes. The impact is profound. It might stop you in your tracks. You might have to spend a lot of years, like, what I call cocooning. Like, cocoon and heal and contract. And, like, take that comfort and space however you can survive, but know that it doesn’t have to be the final say that, like, the clouds can lift and I always say the sun is always shining above the clouds just because you can’t see it doesn’t mean it’s not there. And that brings me so much comfort just knowing like I might be like walking around and just gray clouds feeling so thick. Like, I’ll never see anything else besides that, but the sun is shining. And if you’ve ever taken a flight, you know what that feels like to fly through the clouds and then it’s glorious.
Right? It’s like the sky is just lit up or you know, maybe you get a sunrise or a sunset in there, see other beautiful things, but like that’s existing all the time on a different plane and is accessible to us, at least in our minds.

Victoria: Beautiful.

Katie: Thank you.

Victoria: What was the thing do you think that helped you the most to create a forward momentum of healing?

Katie: I think for me, losing mom at a young age made me realize the contrast is like, yes, death can happen at any time. We don’t know. Like, we can’t predict our future, that makes me want to, like, live. It doesn’t serve anyone for us to just curl up in a ball and be dead ourselves, you know. And so for me, it’s like, well, okay.
Now I know so profoundly that life is short. And I want to, like, live big. I want to live as big as I can and love as big as I can. And I feel like just that thought alone helps me. Just like I think it’s probably inevitable to compare your life to, like, especially when you lose a parent, when you lose a parent at a certain age, you start thinking like, well, that’s what’s gonna happen to me. You know? So it’s easy for me to be like, oh, sixty two sixty two like in my mind. I only have till sixty two and that is really like not a lot of time. And so even though I don’t wanna believe that or predict that for myself, it comes in, and then I have to say, okay, well, what if it was true? Like, what would you do? And I’m like, let’s go. Let’s go do some things that make me feel alive. And so I actually use that as a barometer a lot. It’s like, what makes me feel really alive? And it’s not comfort food and TV and social media scrolling and all the things I do all the time. I’m not judging any of these things, but those don’t make me feel really live. Those things make me feel more numb. What makes me feel more alive is truly connecting with people, is taking risks, is doing something new, getting out of my comfort zone. So when I say I really want to be alive, I use that as a measure. What makes me feel alive? Oh, like, learning a different style of dance, even though I’m not good at dancing. Like, I just I’m like, that’s so fun. So I try to do those things and I my kids are now at the age where they’re graduating from high school and heading to college, etcetera. And I think, like, that even more so, that’s a different kind of grief. And in of itself, like, identity and family dynamic shift, and and whatnot. But I think about that a lot too. I’m like, okay, they’re going out to have their adventure and I can’t, too. Like, this this is We’re getting some time back in our lives. And so I don’t wanna just waste that away. I wanna I wanna do things that yeah. That feel like yeah. I don’t wanna just settle and, like, move into, like, a comfort zone. I want to move into, like, something new and and have an adventure.

Victoria: And be reminded that you are alive. Right?

Katie: Yes. Exactly. Exactly.

Victoria: I lost my dad. He was forty four. Oh. And so that’s one thing people don’t really talk about, right, is you wait for that year to come around. Like, oh, I’ve made it past. My dad’s age now. Okay. Well, I can cross that off the list, you know. So that’s something people who really don’t talk about. Mhmm. One thing I’m curious too, because I’ve I’ve had this awareness just for myself in the last year or so is that I could never I never had my dad’s birthday on my calendar, but I always had the day he died. Wow. Were you the same? Or I, you know, like, I could never celebrate the day of his birth. Right? Which seems really no. I I I was eight when he passed. So I didn’t have a very long time. Right? But I don’t even remember I think there’s a picture of it was his birthday one time, but Yeah. I just think people don’t really talk about that part of

Katie: Yeah. Dates. I can see as an eight year old in only having experienced him for those years how his death date would be way more profound for you than his birthday. Just thinking about that. Like, I’m thinking, yeah, I can’t imagine as an eight year old processing that. And then every year, like, feeling the impact of that in such a profound way, it doesn’t surprise me that that would be your experience. I think that for me, my mom was like, such a birthday accelerator. And I’m like such a birthday. I it’s like I’m a little spazzy about it. I just love celebrating birthdays.
I tease about having a birthday month, and I’m a little bit of a diva about it, and I love celebrating my kids’ birthdays. I’ve created little monsters with them about birthdays. So I think because of that, it’s easy for me to, like, gravitate towards my mom’s birthday and want to do things for her then. There was a couple a year in there where I was, like, oh, like, her day of death, like, pass without me even noticing. And I was like, oh, weird. Like, I almost felt bad for not thinking about it. But I was like, well, it’s fine. You know, like, that’s Anyway, Yeah. I I do think that it’s something I thought about as far as, like, the catching up with your parents’ age. My dad lost his father when he was twenty one. So my dad was twenty one when his dad died. And he I definitely watched him go, oh, I’m getting to the age. I can’t remember how old his dad was, but he he definitely had that in his mind. And I watched him contemplate that. And then, for me, it was just a really profound reality of, like, oh, okay. Like, oh, no. My mom my mom, you know, started her decline in her fifties. That’s not good. And then she died when she was sixty eight, diagnosed when she was sixty two. So I’m like, that’s not good. But even I don’t know. I just think it’s it’s kind of I don’t know how it feels for you, but, like, I almost feel like watching someone die is a little bit like experiencing a car accident and how that, like, just like imprints on your body, like, imprints in your memory and in your DNA away or something. This is all science based. But, like, I think, like, the way you viscerally feel a car wreck, a car wreck, even when you, like sometimes even just say car wreck, like, we can put ourselves back in that space and time so quickly. I think that watching someone’s decline and death it’s not a shocking, but if you are able if you are able to see someone’s processor decline there’s a knowing that happens that you can’t know any other way.

Victoria: Has it made you paranoid about your own health?

Katie: So Yes. So part of my journey, especially in in my film making career at this point, is to raise awareness around FTD, caregiving, like this whole thing. But one of the things I realized in in the moment when we got mom’s diagnosis of FTD, I just heard dementia. And I I heard dementia and I was like, okay, it’s some type of dementia and it’s in her frontal temporal lobes. So those lobes are like, this part of us and And I kind of I’m I I think that I was in so much crisis that I couldn’t even tolerate researching and finding more information. It felt like it would really stress me out even more. It was more like a survival survival. Since then, lost my mom in twenty sixteen. I made my first film in twenty twenty, which was also about dementia, like those early signs of dementia. And in that process, like, got connected with FTD community and more people in this world and started learning more just in my own journey in healing and stuff. And one of the things I learned was that FTD can be genetic. There can be like a genetic strain, like ALS or Huntington’s or one of those things. So that doesn’t feel really good in a child’s mind of someone with dementia or with FTD. But so one so I realized there’s a genetic component and I still was, like, okay, but I can, like, deny this away. Jeff can make sure, you know, oh, well, mom had the car wreck and all these other things, so it’s probably related to that and not really related to any kind of genetics.
But then a number of years ago, her younger brother got diagnosed with a TD. So that was like a a heart soft for me. And there is testing available, which I could partake in. I don’t know if we have. I don’t know. I haven’t done the research on how that works or what we need to be able to find out. And it is something I want to explore just to even contribute to research. Even if I don’t find out whether I have it or not, it would contribute to the research of FTD, which is important to me. But all of that to say is I’m on this journey. I’m making my first feature film.
It is to raise awareness on caregiving and dementia’s in general, but specifically diagnosis with FTD. And as I’m writing the film, I’m, like, preparing, I just feel like there’s this, like, fear monster over my shoulder, like, you have it. You probably have it. Every time I stumble on my words or, like, you know, my handwriting gets wonky or whatever I think, oh my god. Like, this is early signs.
I can probably have it. So that fear is palpable. Like, it’s in my life. It’s present. It’s attached to the grief. It’s attached to the work that I’m doing currently in my life. I was working and moving through it just feeling like, you know, it’s over there. I’m like, just wanting to shoe it away, like go away, go away. And then and then I stop for a second and I think I’m like, okay, instead of trying to ignore this and act as if it’s not here with me, what if I face it. And so I had this moment where I thought, I need to just turn around and look at in the face. And so for me, that means instead of, like, being afraid of it. Why don’t I just embrace it as if it is? And, you know, fear is just our imagination, and we can use it for our good, and we can use it for our demise. And I I feel like For me, this is how it sounded. Okay. Instead of like always being afraid every time little clubs happen or whatever, I’m gonna say, what if I knew for sure? That I had FTD. What if I knew for sure that I am gonna have this thing, it’s coming, this is the way I’m gonna this is the way my life is gonna end? What would you do? And asking myself that just gives so much clarity because I realize even if I knew I had it, I would have to move into acceptance just like we have to with our grief at some point. Why not do it now? And think about this like if I had FTD, I would live my life as fully as possible. I would love my family, my friends, I would try to say present with them, I would try to pursue the healthiest life that I could. You know, obviously, like, we’re all gonna sit on the couch and eat a bag of chips or whatever, but it’s like I would choose healthy food, I would choose outdoor time, I would choose friend time, being present with people, And the other really point of clarity for me was and I would make this movie. And this movie would be like my contribution. And so asking that question and facing that beer monster dead on was such a moment of clarity for me in that I know I’m doing what I want to be doing with my life. I’m being very intentional. And now this movie is not just a good idea or something really fun and cool that I get to try to do, but it now is my mission. And the greatest part about that is I think one thousand percent I’m going to make this movie and it’s going to impact people in these spaces, no matter what. Like, no matter what. My hope is that it’s gonna just soar to the to outer space with success. And My dream is that it’ll be my first of many movies that I have all these other movies that I get to make. I have some really amazing stories already in my mind that I that I cannot wait to get on paper and then on the camera and etcetera. But no matter what, I’m gonna make this one. And if I got FCD and that was the only movie I got to make, so be it.
Like, this is a great one to choose. And probably, I won’t die that way and something else will happen and I’ll get to make a whole other movies, but it just gave me so much peace just to, like, assume that it was that it was rather than fear that it might be. And that peace allowed me to have clarity with knowing that I’m doing what I wanna be doing with my time. In my life. So that that question is so huge for me of, like, what if I got it? And and answering that straight on was really helpful.

Victoria: It’s a powerful reframe. Mhmm. Then there’s probably a camp of people, like, no. You’re like, manifesting it.

Katie: I know. I know. People are like, don’t say that, but I I think I agree. I I do I do agree, like, that can, like, you know, the way we imagine and spend our time and our energy in our minds thinking is is impactful to our lives, but I also have to be compassionate towards myself and be like, of course, you’re afraid of this. Like, it was the most traumatizing thing you ever been through.
So, like, we can’t we can’t have these fears, have this grief, and then also make ourselves feel terrible for being afraid of it, you know, with the manifestation camp. I mean, I love manifesting things and, like, spending my energy for good, but I also have to be honest about what I’m

Victoria: And who’s the thing about that too? As I was thinking about, and as I said that, the other aspect of it, Elo, is yes, there might be people who think you’re manifesting it, but it’s not like you’re dwelling on the fact that I’m I have this. It’s You’re dwelling on the fact that if this is a possibility, I’m going to take action. So it’s almost like it’s you reverse engineering it and your focus isn’t on the dwelling Yeah. That this is, oh my gosh, this is gonna happen to me and it’s oh my gosh.
If this were true, It’s propelling you to take action. Yeah. Inspired action.

Katie: Right? Thank you.

Victoria: How has it changed? Has this movie changed the Like, do you have support from your family? Has this whole experience brought you closer with your siblings? Yes. Absolutely.
Shifted.

Katie: It’s been phenomenal. So here’s where we are right now at the recording time of this podcast. We have I’ve spent, like, years writing this script. I’ve spent the full last year fundraising and growing support for the film where fiscally sponsored and under a nonprofit. For our filmmaking, which is just such a huge it’s something I’m really thankful and proud of. The support has been phenomenal. And when I start thinking about it, I like it emotional. I have so much gratitude I’m doing something that really scares me. Like, this film feels like a really big deal. It’s it’s a big endeavor to do what I’m trying to do with, like, I’m acting and directing and producing the same. And I know it’s like taking a big old bite out of the film making world. But from the get go, the amount of support in people that have rallied to see this film come to fruition has has truly been phenomenal. And you asked about my siblings. And one of one of the ideas I had in this fundraising journey, and I think of it as more than fundraising. It’s not just getting money for film. It’s also growing an audience and growing a community around this. That really what my hope is is the more people that follow along and join us as we’re creating this thing that then we’ll get to, like, launch screenings and theaters around the country and, like, people will be able to come out and watch. But one of my ideas was what if we what if we did some happy hours and different places that I’ve lived and, like, have people host parties and we can share about the movie and and gather our community. And of course, one of those people was my sister in Georgia, and I was like, hey, what do you think about hosting one of these? And she’s so good at hosting parties. She’s amazing. She’s like, I’m in. Let’s go. Let’s do this. And then my brother has a band that he plays in called holy smokes.
And they do cover music and their band donated their time and we had this big old party and it was just such a meaningful event to join with my brother and sister and feel so supported about us taking this journey and, like, them supporting just the creating of wake up Maggie was just phenomenal. But, you know, it’s so touching. Like, I have people who have donated, like, ten dollars and people who have donated, like, thirty five thousand dollars. So it’s, to me, money is energy and time. And it’s all, like, coming from the same bucket. And so I don’t get super fixated on the money. I really love to fixate on the energy and, like, what what are we growing and what are we building and what are we doing? It’s more of a movement. So I have been absolutely floored by the by the people that come along and say, okay, let’s get this movie made. Like, how can I support you?
What are we gonna do? Let’s go. And I’m just gonna say, like, it’s so many women that have done that for me, and I’m like, women are so powerful. It’s just amazing. It’s not all women, but, like, it’s just Yeah. I think I think this is a film. I call it a coming of middle aged film, which I personally love because we have so many coming of age films of, like, you know, the transition of teenagers and I love that genre, but I feel like there’s a different there’s a different transition, a different like a second puberty of sorts that happen in our midlife, and I think that if we let it affect us, it can change us for so much good and so much of it is centered on grief. So much of it is I think sometimes people in their twenties have gone through midlife because they face something deep and profound. You in their life and it’s like a grief and impacts them to the point where they say, I Okay. I’m going to like have this perspective on life and and what I wanna do and know how I wanna live. That’s what midlife is to me. It’s this unraveling of pretense. And and, like, coming into our own and, like, feeling more solid in in our life and our humanity. And that’s something huge to celebrate. And I think getting to see it on the big screen is gonna be a really profound experience for all of us, and I can’t wait for everyone to see it.

Victoria: Well, I definitely will put the link in the show notes.

Katie: Please Yeah.

Victoria: To your page for people to support your mission and your cause. Thank how would you describe the Katie you were before your mother’s own list and the Katie sitting before me now?

Katie: Yeah. That’s great question. So much of my journey definitely is integral with acting. So I started acting after I lost my mom. And I would say before I lost my mom, I was a heavy people pleaser. Lots of personal denial, lots of ignoring of my own needs, ignoring of myself, body awareness. Like, all that was just, like, not really a part of my life. And then the healing journey along walking parallel and my healing journey with grief and then also deepening acting, I feel like my journey with acting has helped me become more fully human. It’s helped me to acknowledge and deal with like emotions that I often would wanna pretend don’t exist inside me. It’s helped me to connect my mind with my body and my nervous system in a deep way, like, oh, I actually need to notice when I’m like, I can look really calm on the outside. I can tend to be, like, a more people often say, oh, you’re so quiet and soothing. And I’m like, funny. Because, you know you know if you’re feeling like this spending or churning inside

Victoria: like a horse and a horse race.

Katie: Right? It’s just this like, yes, you feel that inside and and I think I think my journey with acting has helped me to say, oh, that that’s happening right now. And like, what can I do to support myself? And what can I do to support my nervous system? And how can I experience what I’m experiencing?
But also like not let it stop me in my tracks. So it’s been so profound. It’s been so profound. I think like coming to acceptance with my mom’s disease, coming to acceptance with my mom’s death, and then moving into a life that I I just want to be so intentional and present and just filled with gratitude. It’s just it’s it’s like, yeah, it does feel like an unraveling. I think, Berné Brown has a quote that I love that she talks about, midlife isn’t a crisis because a crisis is one event. Midlife is more of an unraveling. And I think we think of the word, like, being unraveled as, like, a negative thing, like, someone’s frazzled or something. But but I feel it as, like, peeling back for me, it’s an appealing back of the layers that no longer serve me, the layers that I hid behind and and, you know, coming into my own space and in place in this world and, like, owning who I am without trying to constantly please and put everyone else first and like their opinions first. So I think it’s also been a journey of exposing myself in that way too of, like, people pleasers can often blend in so well. And then, acting and filmmaking is like one of the most public art forms you could possibly choose. And so it does a number on me because I think, oh, no, everyone’s blah blah blah blah blah. And I’m like, no, they’re not. They’re completely preoccupied with themselves, but I think just just doing that type of exposure helps me, like, care less. About my imagination towards what other people might be thinking. So, yeah, so I feel like I am obviously, I think we have these core parts of us that are always true to who we are, but I think What’s happened is for me in this process of losing mom and moving forward with my life is that I’m more raw and more real and less hidden in it.

Victoria: I think we almost get as we allow ourselves to be cracked open and

Katie: Yeah.

Victoria: Expose ourselves and do things out of out of our comfort zones and challenge ourselves. We become more like children. Right? One of women and children and we get back to I think that child, like, essence within us that we stuffed away and put away because it’s not acceptable

Katie: Yeah.

Victoria: To have you and and creative expression is is fufu and it’s for it’s like a luxury. And I what I’ve learned in all of these interviews I’ve done in over four years and my own experience is that when you lean into creative expression, and out of your comfort zone, doing things out of your comfort zone. That’s when you really discover who you were always meant to be, I think.

Katie: Yes. I’d love that. Yeah. It really is coming into a sense of play. And you can’t you can’t play unless you’re, like, really present. Mhmm. And our adult minds love to, like, fixate on the past or the future and not, like, right now. So I love that you’re saying that. Yeah.

Victoria: Well, in using the past as your creative fuel. Right? So it is looking at it. Mhmm. You’re not having to look at it. It’s not a stuffing and a tucking away just like and that’s what we do with our grief, and I think that’s what so many griefers find themselves stuck in mid life is that they haven’t allowed themselves to fully express themselves. Yeah.

Katie: No, I totally get what you’re saying about looking at it. I think that writing Even though I’m writing fiction and I’m writing the script and the story that’s not it’s not my story, but it is so much of my story that it has been a really healing journey of of It’s like exploring the past and what happened, but also in a playful way of storytelling. Yeah.

Victoria: Mhmm. Is there anything else that you would like to share that you didn’t feel you got to?

Katie: That’s a nice question. I feel really good. I I just yeah. I I love what you’re doing in the world and and that you’re helping grivers feel heard and seen and understood. And I think it’s such an important thing for all of us because so often grief hits and we’ve not ever thought about it until we’re in it. I think if I could just leave people with anything. It’s just the imagery of the sun shining above the clouds. Think if if nothing else, if you just close your eyes and know that what you feel isn’t the only truth of existence right now. It’s okay to feel it and it’s and it’s also really helpful to know that there’s, like, light and warmth above that you will access.

Victoria: Beautiful words. Thank you. Where can people reach you if they would like to learn more about you? Wake up Maggie, your work, all of them? Where can they connect with you?

Katie: Thank you. For asking that, I try to make it as easy as possible. All of my social media is Katie Prentiss, so pretty easy to find. My website is kady prentiss dot com. And wake up Maggie is all under wake up Maggie movie.
Wake up maggie movie dot com and on Facebook and Instagram is wake up maggie movie. So we’d love for you to follow along and and be a part of our journey. So try to share it all.

Victoria: Do you have a goal date?

Katie: Yes. We’re filming in February of twenty twenty five. Yeah. Oh, awesome. Yes.
Yes. So we’re right in the middle of working so hard to get everything ready for filming. So we’re in pre production production right now. And then we’ll shoot for about three weeks in February, and then we’ll be in postproduction, which is all the editing and sound and all the all the design work that happens on the backside of of shooting the film. So if I don’t know exactly when we’ll be released, but this is why it’s so good for you to follow us on social media or come to our website.
We even have an email list you can sign up for. And we’ll keep you posted. That way, we really love for people to join us and be a part of it. So then when we do screen in theaters, hopefully we can have everyone come out.

Victoria: I’m just curious. Do you have, like, are you, like, one of those people with numbers. Like, numbers are important. Or do you do you have, like, a specific date? Like, you know, your mom’s birthday maybe

Katie: Oh.

Victoria: Something like that where you plan to even if it’s done, you’re not gonna launch until

Katie: Oh, I love that. I haven’t thought about that with mom. I will say I lost mom. We lost her on February twelfth, twenty sixteen, and we’re shooting in February, which is interesting to me. And then I definitely tossed her birth date.
Into the film as a birth date of one of the characters. Obviously, it’s called Waco Maggi after her, but I haven’t thought about the release date. That would be really special if it was on some sort of special date, but I haven’t thought about that.

Victoria: Okay. I’m just curious.

Katie: Yeah.

Victoria: It’ll be really special. I’m sure. Thank you. Amazing way to honor your mom and her memory. Filming in February.

Katie: So Yeah. Beautiful.

Victoria: How that worked out? Yeah.

Katie: Yes. I agree.

Victoria: Alright. Well, thank you so much for your time today. I appreciate you sharing your story and and your mission. And being a part of my mission to talk about grief like we talk about the weather and and it’s, you know, it’s not all doom and gloom. Right?

Katie: Right. Exactly. Yeah. No. Thank you so much for having me.
It’s really no longer to be with you. And all of your listeners and just to be able to share my stories a gift. So thank you.

Victoria: Thank you. And remember, when you unleash your heart, you unleash your life. Much love.

Ep 214 Jessica Fein | Creating Corners of Beauty Amidst Parent Loss, Sister Loss X2, and Child Loss

 

SHOW NOTES SUMMARY:

Amidst the challenges of her daughter Dahlia’s rare condition, MERRF Syndrome, this week’s guest, Jessica Fein, also faced the crushing blows of losing her father and both sisters during the same trying period. Her story is a tapestry of sorrow and strength, woven with threads of love and loss that resonate deeply with the human experience.

The uncertainties surrounding her daughter’s diagnosis added layers of complexity to Dahlia’s health, making it a daunting task to predict her future. Jessica’s unwavering determination to advocate for her daughter, alongside the weight of her losses, paints a poignant picture of courage in the face of adversity.

As Dahlia’s health declined, necessitating intensive care and tough decisions, Jessica grappled with the harsh reality that not everything could be fixed. Her transition from seeking a cure to enhancing Dahlia’s quality of life reflects a mother’s boundless love and commitment to her child’s well-being.

Throughout the episode, Jessica’s reflections on witnessing her loved ones’ pain and her journey through grief and healing resonate with a profound sense of vulnerability and resilience. Her ability to find glimmers of joy and connection (with herself, friends, and spouse) amidst the darkness speaks volumes about the human spirit’s capacity for hope and strength amid hardship.

Jessica’s story reminds us of the intricate dance between love and loss, woven together with threads of grace and fortitude. Her journey embodies the transformative power of facing life’s most challenging trials with unwavering love, compassion, and a resilient spirit that shines through even in the darkest times.

RESOURCES:

CONNECT:

_______

NEED HELP?

  • National Suicide Prevention Lifeline: 1-800-273-8255
  • Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis Counselor

If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.

CONNECT WITH VICTORIA: 

Embracing Joy Amidst Grief – Lessons from Dahlia’s Story

In our fast-paced world, the juxtaposition of joy and sorrow often leaves many bewildered. We tend to compartmentalize emotions, believing that happiness and sadness are mutually exclusive. However, life’s complexities defy such simplistic categorization. This profound realization came to light through a remarkable individual named Dahlia.

The Essence of Dahlia

Dahlia was an embodiment of joy despite her battles with MERRF Syndrome (Myoclonic Epilepsy with Ragged Red Fibers), a rare degenerative mitochondrial disease affecting about 2 in 1,000,000 people. Diagnosed at five years old after showing early developmental delays, she lived until seventeen radiating spunkiness and charm even as her condition worsened over time.

Her mother Jessica Fein shares how Dahlia taught her invaluable lessons on navigating life’s dichotomies—how it is possible to feel immense pain yet still find moments filled with laughter and love.

Balancing Joy And Sorrow

Jessica observed how seamlessly Dahlia managed to intertwine joy amidst suffering—a lesson reshaping our understanding of emotional coexistence:

“She was able to feel honestly everything there was—to feel like sadness or anger or jealousy—and still be joyful.”

This revelation underscores that embracing all facets—fearful anguish alongside fun-filled meaning—is essential for holistic living rather than viewing them as opposing forces.

Compartmentalization As A Coping Mechanism

One effective strategy shared by Jessica involves ‘compartmentalizing’ overwhelming situations into manageable parts akin to pointillism art technique focusing on specifics without getting daunted by the bigger picture:

“I consider myself proficient at compartmentalization which I view essential functioning amid overwhelming circumstances.”

Such mindfulness helps navigate daily challenges while preserving mental sanity during trying times like caregiving responsibilities coupled with work commitments simultaneously balancing personal aspirations too!

Episode Transcription:

Victoria Volk: Thank you for tuning in to this week’s episode of grieving voices. I’m excited to share with you today my guest, Jessica Fein. She is the author of breathtaking, a memoir of family, dreams, and broken jeans. And hosts of the podcast. I don’t know how you do it, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Her writing has appeared in Newsweek, Psychology Today, The Boston Globe, Huffpost, scary mommy, zippy zippy Maeg, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler, kebler,

Jessica Fein: kebler, kebler, kebler, kebler, kebler, kebler,

Victoria Volk: kebler, kebler, kiabler, and and, and more. And, more. And more. And more. Jessicaiahiah, and to a rare disease in twenty twenty two. Her work encompasses hope and humor, grit and grace, the tools that make up her personal survival kit. And thank you so much for your time today and sharing your story with my listeners and myself.

Jessica Fein: Thank you for having me.

Victoria Volk: And so I actually would like to start out by taking us back in time to how this rare disease came about? How you learned about it? What your daughter’s name is? First of all,

Jessica Fein: My daughter’s name is Dahlia.

Victoria Volk: Oh, what a beautiful name?

Jessica Fein: Thank you. Thank you. Yeah. So I have a mama three, three children. My husband and I adopted from Guatemala. So we had had kind of a long and twisty road to parenthood and ultimately landed in Guatemala. And we adopted three babies, not all at the same time. Two years apart, and then two years apart. And Dahlia was our middle child. And what happened was in terms of your question regarding the rare disease diagnosis, she, from a very young age, seemed to be developing a little bit differently and a little bit slower than I thought was probably developmentally appropriate. Let’s put it that way. So her speech was garbled. She was having balance issues. You know? I had that mother’s instinct and tried to get people to pay attention, doctors, early intervention. But, you know, I was told just give a time, she’ll catch up. And it wasn’t until she was four years old that I finally got the attention of a doctor who said let’s do a hearing test. And at that time, she was diagnosed with mild to moderate hearing loss. And that was a condition that would be able to be corrected by hearing aids. But there was a question which was why? Why did she have the hearing loss? Did something happen in utero? Did she have a virus early on? We brought her back to the Boston area from Guatemala at six months. So there were a lot of question marks. And we were sent for genetic testing, which really is a blessing because so many families have to fight for a really long time to get genetic testing. In this case, we got it very quickly, and that genetic testing led to a very clear diagnosis. Another thing that doesn’t always happen. And she was diagnosed at that time with a rare degenerative mitochondrial disease called MIRF syndrome, which stands for myochronic epilepsy, ragged red fibers. Again, she was five years old, and that diagnosis seemed like crazy to us. We couldn’t understand it, couldn’t wrap our heads around it. She, you know, while I had been concerned, never my wildest dreams? Did my concerns lead me to the possibility even of something that grave? And she was the same person she had been, you know, before the diagnosis. So it was very hard to understand. And and even technically, Nobody had heard of this illness. We didn’t know what mitochondria were. We didn’t understand what a degenerative disease meant. And so then we took off on a very lengthy journey that lasted until she was seventeen. Daria died one week after her seventeenth birthday.

Victoria Volk: Wow. And do children typically I mean, what is the life expectancy generally of this

Jessica Fein: Yeah, well, so to begin with MURF syndrome is extremely rare, it’s two in a million, so there’s not really much data to go on. Also, Dahlia had a secondary diagnosis later on, which made her one of six in the world. So the thing with a rare disease is you just don’t know. Now, when we look at MIRF syndrome, what we understand is that people can be impacted even within the same family in really different ways. So, for example, when I googled it that night, there was this long list of possible ways it could manifest. And it went everywhere from short stature all the way to death. So, you know, I did what any mom does, which is two things. Number one, I read the list and I decided it was a menu and I would choose, okay, she could be short. You know, I’ll take that one. I’ll take the hearing loss that I could deal with. But when it got to things like dementia and obviously truncated lifespan, those I wasn’t I wasn’t go anywhere near that. And I felt like, you know, look, I’m the mom. I’ll solve it. I’ll fix it. Right? Because that’s what we do. We think we can fix things. And that was a big transformation for me. One of the ones I cover my book, which is understanding that there are things we can’t in fact fix. What what do we do with a world that seems so wildly out of control? And how do we create any kind of meaning in that in that situation?

Victoria Volk: How did you do that?

Jessica Fein: Yeah. Well, it was a long it was a long journey because like I said, I decided I was gonna it. And remember, I didn’t even know what mitochondria were. So, I mean, the idea that I would fix it was totally fantastical, but and I really did try to do everything I could and I became a big advocate and I looked for every study, and I wanted to, like, travel the world and look for some kind of, you know, miracle. But ultimately, what happened was Dahlia’s disease being degenerative, was getting more and more serious. When she was nine, we were in the hospital for three months. And at that point, she had a tracheotomy which meant she had a hole in her neck with a tube that she began to that she could breathe out of because she had lost the strength in her lungs to breathe and she was ventilator dependent and she had lost her ability to speak and to eat and to move it walk it all. Ultimately, she lost her ability to move it all. But at that point, she was just in a wheelchair, she could move her arms, and she could shake her head in point and things like that. So she became too weak to participate in any studies. And I had a choice at that point because here was Dahlia, who just wanted to be a kid. Like, she wanted to have fun and snuggle and read and bake even though she couldn’t need and live a life and have a childhood. And as the mom, it was my job to facilitate that. And I learned from her in that respect, and I decided that I could not cure this disease. I would do everything possible to try to make the symptoms less to try to understand the nuances of how she could feel better with everything she was dealing with, but also to understand that I had three kids who wanted to be kids?

Victoria Volk: I’m sitting here and I’m just thinking putting myself, trying attempting to put myself in your shoes. And as a mother parent, it’s so difficult to watch your children like you said, the grief of wanting to give them their childhood, them wanting to feel like a child.

Jessica Fein: Yeah.

Victoria Volk: What were some of the things that I mean, I know you did your own research and what did that look like? How did you do that? And what were some of the things that helped you advice that people gave? I mean, did you connect with other parents who Yeah. Paid full time caregivers and you know, of

Jessica Fein: Right. So and first of all, yes. We seeing your child suffer is unbearable. And let look. Yeah.
I have a seventeen year old. And yesterday, I got a text a very healthy mainstream seventeen year old. Okay? And so he was at school yesterday and something happened in one of the classes and a couple of the kids were mean to him. And he texted me. I mean, he was not even that upset about it, but I was, like, wait, are they being mean to you? And and he was, like, kind of. And I was, like, you know, totally devastated if my stuff occurred. And I was, like, you know, wanted to, like, run into the high school and be, like, stuff. You know? So so that’s how we are as parents. Right? So what do you do when you have, you know, this this very serious, serious, as serious as it gets situation? And, you know, I did not at the time connect with too many other people. I did become part of my do action, which is the mitochondrial disease advocacy and research education group. And I’m actually on the board of that, but I didn’t at the time connect with too many other parents. I have since my daughter died connected with way more people in the community, partly because of my own podcast, partly because of my writing, So I now know so many people and I do know what a lifeline other people going through it can be. And it doesn’t need to be people go, you know, it’s not going to be in my case, other people whose kids have MRF syndrome. It’s too rare. But it’s other people whose kids are medically complex or have rare diseases, who are child loss, who, you know, have intense special needs, all those things, parents whose lives look so dramatically different than what they had envisioned. But at the time I didn’t, and there were a few reasons. Number one, I didn’t have time. I was working full time. My daughter was an eyes on patient from age nine to seventeen, which meant she was home but our home was an ICU of sorts and myself or my husband or a nurse trained specifically in her care had to have our eyes on her twenty four seven. He was very intense and I became a highly skilled medical provider of her medical needs. I mean, it was intense. And so between working full time and then being a full time caregiver and then trying to create this childhood and this environment for my three kids and also writing a book at that time, I didn’t really have time to connect with many people in the community. So to your question of, what did I do? I first of all, so, so, so lucky to have a great partner and my husband. And that’s not always the case. I mean, you have single parents going through something like this, or you have parents who aren’t on the same page. And we know that more than fifty percent of couples who have a kid with special needs, let alone living on the precipitously, split up. So that that was a real blessing, you know. And for us, that we had each other. And I have some other, you know, really close friends. I couldn’t I didn’t see people very much, but people that I knew were there were my corner. And also my husband and I try to give each other some space to have some time to ourselves because that can so easily get lost in this situation. And I will say, because I know we’re talking about grief in general, that a couple of things along this journey, I did lose all of my family members in terms of my family of origin. And that is part of my story in my book, which is losing two sisters and three parents, which happened a lot in the way. And so I’m very reluctantly familiar with all kinds of grief. And it’s not just the grief of losing somebody, but it is other kinds of grief, what I call non hallmark kinds non hallmark card kinds of grief. Right? So ambiguous grief, for example, was something that I became very familiar with. I’m not sure if that’s something that you’ve talked about much on your show, but, you know, there there are so much loss that can even precede or surround or be separate from loss that comes from a death. Howard Bauchner:

Victoria Volk: Yeah, I I just talk about grief. Whether it’s I the labels might be helpful, you know, to understand it, but Yeah. As far as, like, healing and stuff like that, I don’t know that I yeah. It’s just all grief to me. Yeah.

Jessica Fein: But for me, it was a real eye opener because I didn’t under stamp that there were other kinds of grief. And I didn’t feel like it was appropriate at the time to be grieving when my daughter was here. It was in front of me. It was alive. And I really, for me, it was such an important thing to understand that there are other kinds of grief. And it is okay. And we can grieve a life we had imagined. And we can grieve a voice we’ll never hear again. And, you know, all of these other kinds of things. We can grieve for somebody who’s still alive. And for me, That was very helpful because once I understood that this was valid and that this was real and that this had a name, it took away some of the power and it allowed me to integrate that grief and to move forward more effectively.

Victoria Volk: So you lost three parents and your two sisters during that eight year span that you it was twenty four seven.

Jessica Fein: Well, my I lost I mean, my my first sister actually had died when she was thirty. So that and I was twenty seven. So that was the first major major loss. And then my mother and my father and my father-in-law died during that time as well as my older sister. That’s a lot. It’s a lot. And, you know, it wasn’t like they were all together. It wasn’t like everybody you know, sometimes when you think about a whole family dying, it’s like, though, they were all in a car. Mhmm. I’ll take that. It’s not like a hierarchy. It’s not better or worse

Victoria Volk: than ever.

Jessica Fein: But this was like one one offs. And it was also not like there was something that was running in the family. This was like just, you know, all all different kinds of things. So it it’s it’s pretty inconceivable. And yet, that’s what happened.

Victoria Volk: And yet, here you said,

Jessica Fein: And yet here I sit and it’s interesting because I know it sounds, it’s like when I’m telling my story to somebody who I’m just meeting, it it’s like I now I have written about it. I can speak about it. And it’s so much to take in. And I have two friends who are therapists who said to me, my goodness, if you were to come and just be telling me all this, I’d be like, oh, she’s I don’t even know there were some like a diagnosis of like that can’t possibly be true, that can’t possibly be with that because it seems so crazy and yet when you’re in something like this and underlying all of it is this intense care and intense situation and this life on the precipice, you you integrate it and and move forward. Like, there’s no time to be to lay in the fetal position. Like, there’s no time to be on the bathroom floor crying. Twenty four seven. You can’t. You cannot.

Victoria Volk: One of the things that tends to go to the wayside when the life life, like, just throws, you know, the shit our way, basically, is our self care and just caring for the self. And so how what did that look like for you amidst all of that?

Jessica Fein: Was I’m really glad you asked that because and I actually talked about this in the book. Working outside of the home was important to me, and I did get judged for it because there were people, even medical caregivers in our home, who felt that it wasn’t appropriate for me to continue working. And to be clear, I was the primary breadwinner and this life was expensive that we were living and nobody questioned my husband working. But I will say that when we talk about self care, Part of that to me was getting out of the house and working in a job that I knew how to do that I had been doing before I became a mother. That was very helpful for my identity. And that was also I think an important break during the day. Mhmm. And I think it was able to make me more present when I was home. So that was one thing. Another thing for self care for me was I’m I’m not like a big exerciser, but I did start to do pilates and just having this like twice a week that I would get out of the house and do this thing. Was also a nice break. And then also when we talk about self care, I think that the writing was important for me. You know, I wrote the book while at my daughter’s bedside. And I think that that was a really important outlet. And it allowed me to tell my story my way, which meant I was able to make some order out of the chaos. So I think those were things, oh, the other thing for self care is that my husband and I as much as we could did a date night until COVID hit, we really kept that up. And it was complicated because in order for us to go out together, we needed to have two people at home, a nurse and a babysitter because we have these two other kids and also the nurse was not a babysitter. She does not be hired to entertain. So we would need a team of two. Which first of all is an expensive proposition. But second of all, we needed to make sure that they got a lot. I mean, I remember we had this one nurse and babysitter and the babysitter was like part of our family. And afterwards, she was like, I was really uncomfortable with that nurse. You know what I mean? So that’s like a whole other dynamic. So it was complicated, but getting out of the house for about two hours on a Saturday night was such a sense of normalcy for us because our lives were so abnormal. So to be able to do that. And every night, every Saturday, we’d get in the car, and we’d look at each other, and we’d say, we’ve never needed a date more. And every Saturday night, it would be true, even more so than the week before, you know? And so So there were those things. I think it was having I think what all of these things did, whether it was the writing or the Pilates or the date night or whatever is my work. It gave me an identity separate from being the mom slash caregiver. And I think that’s important, you know, for anybody in any situation.

Victoria Volk: When you were describing you and your husband getting into the car and recognizing that you never needed to date night more, I physically, like,

Jessica Fein: I just had this That is what we would do. Literally, it was that huge exhale and the looking at each other. And I always you know, it didn’t even matter, like, if we were engaging on that date night or if we were just sitting there in if we had the one restaurant, it was close by, so we knew we weren’t, you know, we do what we were gonna do. We would go there. We still go there pretty much once a week. And, yeah, just to have that that ability to be outside of all the other roles that had become such an integrated part of our lives.

Victoria Volk: I think that’s a key point what you said is to put yourself in a different role. And in that moment, you too could be husband and wife.

Jessica Fein: Yeah.

Victoria Volk: And connect.

Jessica Fein: Mhmm. Exactly.

Victoria Volk: And one thing too, like, people may be listening and something that comes up for me as I’m hearing you share is many people who experience a child that is a lot of care or what have you. They have that support system around them as in the parents. Sometimes even the grandparents move in to help support and care and you didn’t have that either.

Jessica Fein: We didn’t have that either. And I will say that That was another thing I was dealing with. So my eldest sister had lung cancer, and she was diagnosed in the middle of all this. And I was kind of her primary person, and it was insane. It was so out of the blue and that was a whole other ride. So I was really torn. I mean, we talk about the sandwich generation caring for our children and our elderly parents at the same time. This was like triple decker sandwich or something because I had the sibling thing too. And it was really hard and I did I did, you know, I think that what I was going through may just compounded, was compounded by the other losses and those became so much more present for me because I so wanted to be able to just like you know, cry to my mom and and, you know, be be parented. Right? And and when for a while, I was taking care of my parents. And then when they weren’t here, it was incredibly lonely.

Victoria Volk: And that brings me to the topic of friendships. I mean, you probably didn’t even have time for friendships, and maybe the friendships you had fell away because you know what happens too.

Jessica Fein: I will say, I’m very lucky that I have a circle of friends, people I’ve been friends with since I was a kid. And the reason I feel so fortunate about that is because I feel like meeting new friends when you’re going through such intense things. Is so hard. Right? Unless it’s people who are also going through intense things. But it’s too much to catch somebody up on. You know what I mean? It’s just like it’s a lot. So what we were going through was so unrelatable that people who knew me before, that became very, very important for me. Even knowing they were there, they weren’t in Boston, you know, they’re all over the place, but knowing that I had these people was important to me. And I think that we see in grief, right, how hard it is to maintain friendships because people are so awkward and they’re so uncomfortable, and they don’t know what to say. And God forbid, they bring up your kid’s name, which is all you really want to talk about. You know? But they just don’t know what to do, and this is such a problem is that we’re just, as a society, so uncomfortable. And it always blows my mind because I feel like grief is the single most universal thing.
Like, every single person is going to be a grieffer. And yet, we’re so awkward. We’re so weird about it, where it should be the great unifier.

Victoria Volk: That’s what I talk about. On the podcast, like, that’s what I talk about. It is the one thing that unites us all that none of us differ on. Like, we all like, we are all creepers.

Jessica Fein: We are all creepers. Every single week of us

Victoria Volk: at a

Jessica Fein: hundred percent, like, And and with all other life cycle events, we understand how to be there, how to show up, how to sit with somebody in all other life cycle things, and yet when it comes to the thing that is the loneliness. And the thing that is the most universal, we don’t know how to do it. We don’t know how to show up. We don’t know how to sit in the silence. Right?

Victoria Volk: And that brings me to the question of how were you taught as a child to grieve and express grief, and how was it what beliefs were passed down to you about grief in your household growing up?

Jessica Fein: You know, I don’t really remember too much from growing up. What I remember with every cell of my being is the sudden death of my sister when I was twenty seven and she was thirty. And she was my best friend and we had been on the phone this morning, that morning, excuse me, and she died suddenly that afternoon. And that changed my worldview, more than any other loss. Even more, I will say, than the loss of my child because by the time that I lost Dahlia, which everybody will say, the worst thing that can happen is losing a child. And I’m not saying what’s worse and not worse. I’m just saying that that first loss changed my worldview. Because before that, I saw the world through a bubble. Right? I was looking at a bubble every, you know? And that loss punctured the bubble. Then I saw the world through the clarity of the puncture, not through the hazy sheen of the bubble. Right? It changed everything for me. And I think that I probably then I was not living with my parents at the time, but I had them as models of how it is possible to carry on, which they both did. After losing their child. Right? And so it was forever altering for them. And they were absolutely different people on the other side of it and they carried on and they engaged in the world and they had lives, you know. And and I think that probably that somehow sunk in that it was possible to have an other side, to have, you know, life on the other side of what seems like, how can you continue on?

Victoria Volk: Is do you what’s your sister’s name? Both sisters.

Jessica Fein: Yes, my first sister and thank you for asking. Her name is Noomi and my other sister who died of lung cancer more recently is Rachel.

Victoria Volk: Do you speak about them in your book too?

Jessica Fein: Yes. Yes. I mean, you know, the book opens with the with the sudden death of my sister, Noomi. It’s not a big piece of it, but I couldn’t tell the story without starting with that because it was a life changing for me. And then Rachel’s a character in the book because that happened much more recently and so out of the blue. I mean, they were both out of the blue, but one was like totally out of the blue sudden and then of course lung cancer we know can happen you know, when you’re diagnosed with stage four lung cancer, often that means that you don’t have a boatload of time.

Victoria Volk: What were the lessons that you learned from the loss? Of the grief of your sister your first sister. Know me since that was the one that kinda cracked you open. Yeah. What are what are the things that Dahlia taught you about grief then too?

Jessica Fein: Oh, two very different answers and so important both of them. With know me, what I learned was I never would nor would I want to get over the loss of my sister. This is not something I was trying to put behind me. It was something I was trying to figure out how to bring forward in a healthy way with me because she is such a core part of who I am and it was very important that I mean, I I would never want to not be grieving for her. Like, I can’t even imagine that. So it was not how are you gonna get over it. It was how are you going to move along with it? And And that was, you know, a learning because I didn’t know much personally about grief before that. Dahlia, I learned everything. I mean, here was a kid who lost everything that a kid has. She couldn’t move at all. She couldn’t speak. She couldn’t eat. She couldn’t run. She couldn’t, you know, she couldn’t do all of these things.
And she did not become bitter, angry. You know, all the things that I think I would become. She wanted to continue to have have joy. And and not in a, like, kind of denial kind of way, but in a like, this is my life. Like, I want to be out there. I want to be experiencing it. So so watching her do that made me realize that joy and sorrow can live side by side. They can hold hands. You can have grief and you can have beauty. And all of these things that I would have thought were mutually exclusive, fear and anguish and anxiety and, you know, moving or all the things. And then on the other side, you know, joy and fun and meaning and all these things like they can all be intertwined. And in fact, I think they become stronger in the presence of the other.

Victoria Volk: I’m just trying to imagine how, like, did you compartmentalize, like, when you would come into the room and, like, just I mean, because you essentially have to, in some respect, like, set your your stuff aside, right, to fully be present with her

Jessica Fein: Okay. I think I’m the queen of compartmentalization. I think I’m like, I don’t even know if it’s a good thing or a bad thing or whatever, but I do think it’s key to for me to being able to function because, you know, here, the the situation was too big to take it all in at any time. It would have blown us down. We couldn’t do that. I compare it to a pointalism, you know, the the kind of art where when you’re standing up close, you just see the the dots. And you have to back up to be able to tell that it’s, you know, a canoe or a field or whatever it is in the picture. We couldn’t back up. We couldn’t take in the big picture. It was too big. We had to be real up close and understand what each point was and and be attending to each point. And it wasn’t until after Dahlia passed away that I felt that I could back up and begin to take in the enormity.

Victoria Volk: One of the things that I had a previous guest on, she is the author of always a sibling.

Jessica Fein: Yes. Andy Orangestein.

Victoria Volk: Yes. Have you read the book?

Jessica Fein: No. But I have it, and I’m about to speak, I I have an upcoming thing where we’re gonna be together,

Victoria Volk: and she’s coming on my show. So Awesome. Yeah. She is wonderful. And one thing that I didn’t really think about until reading her book was that and she came on my podcast, was that our siblings are the people that know us the best who they’re the longest relationships that we have. And so for you when you shared about Nomi and how that grief was harder, in some respect.

Jessica Fein: That’s right because I have never been a day on this earth without her. Mhmm. Twenty seven years she was by myself. For, you know, the second that I came into the world, she was, like, celebrating me. And we, you know, they’re they’re that connection.
There’s nothing like it. And I remember at the time and I will say, she had been married for five years when she died and she had been with her husband three years before that. K? So I remember so vividly thinking even right then, his goal will be ultimately to move on. Right?
His goal is going to be you know, here’s a young guy and they had a baby. And ultimately, I mean, he’d always remember her, but this would end up being an eight year chapter of his life. And his goal would be to move on. And I say that with all the love in the world for him, but that that was the situation. Whereas my goal was to hold on, I’d never wanted to let her go. And, yeah, I mean, a sibling relationship, I think it’s interesting that that, you know, Annie said that and and I understand it because you it is the longest relationship that they know you in a way nobody else will ever know. When you have a good, healthy, great, and in my case, when you have a sibling who’s your best friend. And also like she shared too, they fill the gaps of your childhood. Like, totally. There’s they know your childhood, like, nobody else. And that’s why, you know, earlier when we were talking about my friendship circle, I’ve got some friends that I’ve had since, like, eight years old. And so I think they now have stepped into that role, and they know all the players you know, and they’ll remind me. Remember when your mom, you know, because we all grew up together. And that’s why those friendships are so important. I mean, you know, for other reasons too, but but right?
They are the the safekeepers of your history.

Victoria Volk: That’s so true. Like, I have friendships since I was in five kindergarten. Like, we’re still close and I cherish those. Yeah. For sure. What is the one thing that you would say to parents who and I know we kind of alluded to it or kinda started this podcast talking about how you have three children. But so many parents I know we’re jumping around here a lot because you’ve had, you know, such a variety of losses, but when parents seem to struggle with the question who have lost a child, how many children do you have? And, you know, I

Jessica Fein: was like, well, do I say, do I even get into it if I had a child lost? Like, you know, if I have my kids with me and there’s there’s four, but I actually have five. And do I say I have five? Or where’s the fifth one? You know? Like, how how do you navigate that? Yeah. So what I would say is to every parent, It is entirely up to you at any given moment. How you want to answer that question? If you are in a place where you don’t feel that the person asking it is a safe place or if you’re with other people or if you just don’t want to get into it, say what you want. Say to if you’ve lost your third. That’s fine. You don’t have to feel guilty about that. This is up to you and it is how you are going to feel best and safest. I will say I am the mother of three. I believe I will always be the mother of three. I often think about it with somebody who had one child and lost one child, but But the inevitable next question always is how old are they? And then what happens is you find yourself apologizing to the person, listen, I’m sorry, this is gonna be really hard for you. Right? But I got because you know you’re about to make them so uncomfortable, So it is a total minefield as is so much else.
The question, how are you? Is a total minefield? Right? Like, what am I supposed to If I’m feeling okay in that moment and I say, oh, you know, things are good, then you feel totally guilty. Like, how could I answer the question that way? Mhmm. Right? And I mean, there’s so much we just there’s so much we make ourselves feel bad about, and we don’t need to do that. We need to do what’s gonna be in that moment. And you can run into two people in the grocery store and feel like you wanna answer that question two different ways.
It’s okay. It’s up to you. You know? I will find myself I I I for me, I just can’t imagine saying, I’m a mom of two. I can’t. Dahlia is such a huge part of who I am, you know? Just like it’s very, very hard for me when people say, oh, do you have siblings?

Victoria Volk: Yeah. Exactly. I was just I was thinking that too. It’s it’s kinda nice sort of thing.

Jessica Fein: Yeah. I always will have to I mean, I’m always I’m the youngest of three.

Victoria Volk: Yeah. Well, that actually brings up another question because I didn’t assume you had more siblings, but I thought maybe there was a chance you had more siblings and I didn’t ask. And now you’re in now it’s I

Jessica Fein: am orphaned. Yes. Yes. I know. And when my eldest sister was diagnosed, we had lost our parents and our other sister. And she said to me, I’m gonna be okay because no god would ever do that to you. And that’s what she believed. It would be There’s no way that reality that is my reality now that that could happen. And I suppose as I get older, it will be less shocking because it’ll be more in the natural order of things. But I’m nowhere near the age yet when one would expect that, you know,

Victoria Volk: That just made me well up. Yeah. I know on your website, you talk about you mentioned the personal survival kit, and you’ve talked about I think you have alluded to Grace the grace you give yourself, the grace you give others. But what does hope and humor and grit look like for you in your healing?

Jessica Fein: Yeah. Well, hope, I’m I’m a big believer in hope. And I think what we hope for changes all the time, for a while I hoped for a cure, and then that wasn’t going to happen. Then I hoped she wasn’t in pain, or I hoped we’d be able to have a successful outing that afternoon or I hope, you know, but but the idea of living without hope is not compelling to me. And I think that we get to choose if we want to be hopeful about things.
And we get to choose what we want to be hopeful about. As for humor, I think you can always find humor. I mean, as long as you’re willing to open yourself up to dark humor, there’s there’s humor. I mean, life is ridiculously humorous and, you know, ridiculously punishing and all the other things. But but I I feel like humor is important too. And and in my writing, I mean, that is probably one of the things I hear most often is, oh my god, I did not expect your book to be funny. You know, people will say, I expected to cry, I didn’t expect to laugh this much. So, you know, fair, fair, you know, warning or promise to anybody who’s gonna pick it up, hopefully, you will feel an array of things when you read the book. You gotta have grit to carry through. I mean, you have to be able to pull on the the the rain boots and get on, put yourself in the muck every day. And that to me was the grit. It was getting up and doing it again day after day after day.

Victoria Volk: And I would also want to ask because I I did think of another question. I’ll circle back to that. But were there any books that you because you had books on your thing too and you’re a avid reader and you’re a writer. So are there any books that you would recommend that you found most supportive to you as you were going through all of this?

Jessica Fein: Yeah. Well, I’m a huge reader and I would say that for me. And, you know, when you talked about self care earlier on, I didn’t mention, but reading for me. And and at the time, in particular, I just wanted to read fiction. Anything that’s gonna take me out of my situation. So I would say that for me. And then in the book, I do talk about three other books. One is or or three other authors who meant a lot to me. One was James Baldwin, who whose life situation couldn’t have been more different from mine, but wrote so much about people meeting tragedy and standing up to tragedy rather than letting it blow them down, and that was very important to me. Also Mary Oliver is an amazing poet, and her work just really, really was was very important to me. And then my father was a writer in reading his his words and understanding what he had to say about loss, having he had written a book about the loss of my sister. So that was very important to me as well. Yeah. It was and and I quote him quite a bit in my book.

Victoria Volk: That’s beautiful. You also have on their cores cores corners of beauty? What is that? Yeah.

Jessica Fein: And that’s a big part of my book as well, which is this idea that I’m talking about a letter that I received from my father. I he had left me some letters to read after he died. And we talk about creating a world of beauty and where that’s like a really tall order. And none of us really can do that effectively. We’re not that powerful, but we can create corners of beauty. That’s something that’s within each of our control. And that can be how you respond to somebody you see out in the world who maybe needs a hand. That can be how you make something out of a lousy situation, a horrible situation that can be having a candle light dinner in your daughter’s room next to the beeping monitors. You’ve created a little corner of beauty. So corners of beauty is something that I think is in all of our control.

Victoria Volk: That that’s juicy. That is really juicy. I think there’s something there for you to really dig into and elaborate on if you haven’t already. I’ve I’m not assuming you haven’t, but if you haven’t, like that that’s very intriguing to me. That’s I love that.
Thank you for

Jessica Fein: Thank you. Alright. So maybe that’s book maybe that’s the follow-up.

Victoria Volk: And also writing it down. And of course, because you had that on your website as well, writing it down, and writing was very much therapeutic for you. It sounds like at the bedside of your daughter. And Yeah. And having that emulated for you too by your father, I bet that was such a gift.

Jessica Fein: It really it really was. And, you know, one of the things that I learned from it was that his book was not a book about my sister, but he handed me the manuscript. He said he wrote a book about Noomi and I read it, and I said, this isn’t a book about Noomi. This is about your know me. If I were to write a book about know me, it would be a totally different book. And that was really important to me. I’m sure if my husband were to write a book about what we went through, it would be a totally different book. Right? I mean, people are so different for each of us. And even the very same loss or the same situation, you know, two parents of the same kid or two siblings of the third sibling. It’s a different loss.

Victoria Volk: Because all relationships are unique. Exactly. And so how can I ask this is my last question and because I you brought it up and I I actually wrote it down? Husband grief. Like, how Yeah.

Jessica Fein: He it’s totally different. I mean, he would never in a thousand a million years have a conversation like we’re having. Right? I find it I would talk about this all day long because for me, it’s an opportunity to bring my family, my losses forward, to have them be present, to tell their stories, to allow people to get to know them, So it’s very, very important for me. And I am so grateful for the opportunity to to do that. My husband is much more private, so he’s very supportive of me doing what I want to need to do, but think he doesn’t even like to come to my book reading. He still likes it in the background and maybe, you know, so he can sneak out if he needs to because he’s a much more internal private person. And I think that that’s, you know, we need to be able to respect that we’re all gonna go through it in our own way. And there’s no wrong way. And there’s no timeline. That’s a big thing. I see a lot of people. I see a lot of people out there who say, well, jeez, it’s been x number of to, you know, why isn’t that a person over it yet? And it’s like, no. No. That’s really why

Victoria Volk: I started this podcast was to, you know, banish the misinformation and the myths of grief and all these things that were taught like time heels and grief alone and replace the loss and, you know, these behaviors that we find ourselves doing to bypass our feelings and not feel them. Right? And to feel better in that period of time. And so, you know, what may have destroyed another couple sounds like it really just brought you two together and allowed you each to honor each other the losses and the way that you found helpful for you as individuals, and I think that’s a beautiful thing. Is there anything that you would like to share that you don’t feel you’ve got too that you feel is important?

Jessica Fein: No. I think that this this covered it. And you know, I love, as I’ve mentioned, connecting with people on these topics, and I invite people to connect me on social or well, first, please check out the book. You know, wherever you get your books. Whether that’s Amazon or BookShop dot org, Barnes and Noble, breathtaking. And, you know, I’m having some really interesting conversations with book groups who are reading it together, and I’ll go to any book group I’ll zoom in or whatever if if people choose to read it with with some friends. And then, you know, yeah, my website is where I keep up to date on everything in terms of, you know, other writing I’m doing, events that are happening. So, yeah, you can check that out at jessica find stories dot com and that’s fine at the EIN because post people hear it and think it’s the other way. So just the fine stories dot com.

Victoria Volk: Yeah. And we say fine and grief recovery. We say fine as feelings inside not expressed and that is not you.

Jessica Fein: So That is that’s alright. That’s very funny.

Victoria Volk: I look forward to checking out myself. I love me some dark humor. So thank you so much for being my guest. I will put all of the links in the show notes and thank you for sharing your warrior story. Really? It’s a warrior through grief. And, you know, we all don’t have to do some grand things with our grief and share it with the world. But if you can connect with other people, like, and create those corners of beauty like you shared, That’s healing. So thank you for sharing your story because storytelling is healing too. Storytelling is healing.

Jessica Fein: And I also, you know, I didn’t mention I do a column in psychology today called grace and grief. You can find that online. I write a lot about not only our own individual grief, but how you can support others in their grief. So if people wanna check that out. Thank you so much. And remember, when you unleash your heart, you unleash your life, much love.

 

 

Ep 173 Zane Landin | Empowerment Over Stigma and Keeping My Mom’s Legacy Alive

Zane Landin | Empowerment Over Stigma and Keeping My Mom’s Legacy Alive

 

SHOW NOTES SUMMARY:

Zane Landon, a mental health and disability advocate and founder of Positive Vibes magazine, actively promotes mental health awareness, wellness, and inclusion. Despite battling his own mental health, Zane showed up to the Mental Health Youth Action Forum in Washington, D.C., to advocate for youth mental health policies and confront the stigma surrounding mental illness, particularly the misconception that it leads to violent behavior.

In this episode, he shares his journey with major depressive disorder, emphasizing the empowerment he found in diagnosis and connection with others, as well as the healing power of helping those in similar situations. Alongside these topics, Zane addresses his struggles with weight and overeating and the recognition of the complex relationship between mental health and eating habits. He stresses the importance of body positivity, self-acceptance, and maintaining health objectives.

Reflecting on the universal impact of mental health, Zane discusses the importance of recognizing individual worth and the value everyone brings to the world. His narrative includes the profound effects of early life experiences, personal achievements, and investing in oneself. In light of COVID-19 and the loss of his mother, Zane expresses gratitude for her influence in his life and explores his belief in an afterlife and continued connections with those who have passed.

The conversation also delves into processing grief. Zane emphasizes the need to change one’s internal narrative. He candidly discusses his spiritual yearning and the lack of definitive answers in coping with the absence of loved ones. He finds solace in the hope that his mom is in a safe place or some form of afterlife, and he seeks to honor her memory by channeling his love and energy into positive actions, such as a newfound love of cooking (which his mom loved to do).

Grateful for the ability to discuss grief, mental health, and suicide openly, Zane advocates for improved societal approaches to these issues and uses social media and his digital platform to promote accessibility and encourage positive change.

RESOURCES:

CONNECT:

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NEED HELP?

  • National Suicide Prevention Lifeline: 1-800-273-8255
  • Crisis Text Line provides free, 24/7 support via text message. Text HOME to 741741 to connect with a trained Crisis Counselor

If you are struggling with grief due to any of the 40+ losses, free resources are available HERE.

CONNECT WITH VICTORIA: 

Victoria Volk: Thank you for tuning in to grieving voices. Today, I have a guest episode and Zane Landin, has joined me and he is a mental health and disability advocate, a queer rights activist, entrepreneur, and positive change maker. He is the founder of Positive Vibes Magazine, a digital magazine that’s dedicated to telling authentic stories about mental health, wellness, and inspiration. The magazine has featured over eighty voices, reached thousands of readers from over a hundred and fifty countries, and secured twenty-two thousand followers on several social media channels. He attended the first ever mental health youth action forum in Washington DC, where he met President Biden, Selena Gomez, Dr. Murphy and Dr. Biden. Out of hundreds of applicants, he was one of thirty young applicants selected from across the country to attend the forum to allocate youth mental health activation, policy, and inclusion. And thank you so much for joining me today and for taking your time to share the work that you’re doing, which is obviously having an impact because people are finding you, it’s definitely needed. And for also sharing your story of grief, which is what brought you to the podcast today. So thank you so much for being here.

Zane Landin: Thank you for having me and also for facilitating a podcast on grief. It’s not a topic we talked about enough, but it really does impact almost everyone at some point.

Victoria Volk: It does impact everybody because we all grieve something. Right? Yeah. Even if it’s the loss of a dream.

Zane Landin: Mhmm.

Victoria Volk: Or a pet, loss of a friendship. Right? No one has to die for us to grieve. And so that’s really why I wanted to start this podcast too to help people understand that grief isn’t just about death. And I imagine in the work that you’re doing in activism and in what you have found yourself in the work that you found yourself in, the position that you found yourself in, hasn’t been necessarily an easy road because what I found in doing this podcast for almost four years now is people find their purpose through their pain.

Zane Landin: Mhmm.

Victoria Volk: And so I know you didn’t come to this podcast to talk about what brought you to the work you’re doing today, but I often believe which is often the case is that, like I just said, there’s a story there and I would like you to share and we can start there what led you to do in this work.

Zane Landin: What’s funny is, I’ve always experienced mental health conditions for a young age. I don’t know if I can really think of a time I left. Right? Didn’t have an irregular feeling of intense anger or depression. Or sadness or whatever it was. So he’s so then I’m always thinking about so then I’m always working on and I saw, like, a psychologist growing up. So luckily, my family knew about mental treatment and they move forward from the mental stigma that exists, which is I think sometimes uncommon. I think a lot of people do fear how they’re gonna be judged or perceived, like, especially when it comes to mental health because of how it’s been portrayed in so many conversations and so many stories to hold online or the media. And even when you think of mental health, we resort to think about violence because of how horribly, mental health has been portrayed in so many stories, especially when it comes to, I’m just gonna be upfront like serial killers. You know, you think about serial killers and it’s always talk about mental health. And I understand that sometimes unaddressed mental health can lead to that. But if you really look at the statistics, people with mental conditions are gonna be more victimized or more violated than vice versa. So we have to wait we had to really shift that narrative that you know, it’s not necessarily with mental health conditions that are that are engaging in a valid behavior. Sometimes it’s the opposite. And because we have such a stifled view on what mental health is, people do find a way to justify their violence against them. As we’ve seen, there was that story of someone who had a mental condition that was murdered in a subway. And so It’s just the way mental is perceived. And so I understand that sometimes the mental health stigma is so powerful that it will infiltrate your mind and it will prevent you from seeking help. I think that’s a very sad thing that people have to live in that kind of world. And it still exists for me, but I’m since I’ve been in the work so much, I can really recognize what my saltigo is, and I’m just kind of at this place where I move forward from what people think and that if people are really going to look at me negatively for having a mental health condition, that’s a good sign that I don’t need to be around you, and I’m kind of creating my own community that way.

Zane Landin: So it’s like a good filtering device. So like I said, saw a psychology for many years. And then I was doing okay. When I graduated high school, I went on to university, and I was doing really well. And then there was a timeline life where nothing fit. Nothing was going well. I didn’t know where I was headed. I felt like I was in such a plane of uncertainty all the time. So I didn’t know where my life was headed. I was, like, at odds with my family because of this type of relationship I was in.

Zane Landin: So there was a lot of things happening, and there was a lot of first things happening. Like, I was in my first relationship, and I did not know how to react. I didn’t know how to feel at that moment. And then when you like you said, if you’re talking about grief, I had to grieve that relationship. Luckily, I didn’t have to fully agree with it because I still decided to see that person despite what my family said. And that was kind of the first time I was at this weird odd with my family. Eventually, they accepted him because I was still with him for many years after, and they accepted him. But it took a lot of time and grace for that to happen. And in hindsight, I understand where my family was coming from, but it was still very very hard in that moment. And there was a point in my life where I engaged in self harm. And I feel like the moment that I made physical contact with my body, like, the moment that happens I feel like that there was a, like, a I wouldn’t say I wouldn’t say in-depth. That’s that’s probably not the right word. But I would think that there was, like, something I mean that changed completely that day. And it’s not necessarily, like, my life has been doom and gloom all the time, but it’s kinda like there’s this there’s this new level of pain I never thought about, and now I do. So I have to, like, be careful with myself.

Zane Landin: Because the moment I cross that threshold, you can’t go back because it’s always an option now. I never thought about it. I never thought about it myself in that way. The moment I did, it’s there now. And so no matter what happens, no matter what I do now in my life, if I ever come to a dark place, it’s still in my mind that that’s a possibility.
So I have to really actively make sure I’m not gonna do something like that. Same as suicidal ideations I was having a lot almost every other day, maybe almost every week, something like that. So yeah. Like you said, turn your pain into purpose. And I don’t want people to only focus on the pain, and it’s good when you turn into purpose.

Zane Landin: But I think it’s also a good reminder of how far you’ve come and what you’ve had to do to get there. And so I decided to take the semester off of the university. And then after I knew myself was a huge topic, but then I didn’t realize a severity of how important it was. Until I experience it myself. I already knew about it. It’s something I didn’t know about it, but it was like, I didn’t realize how painful it can be to this extent. And I knew pain though. I did. So after that, I was like, I need to I need to create community. I need to get involved somehow. So I got involved in just different mental health organizations, and that’s all. That’s really where it started. And that’s and these organizations like active minds or NAMI, National Alliance on Mental Illness, they all did give me a sense of community of this is a place I can go to. If I’m not finding that support in the real world, because, unfortunately, it is difficult to find that support. I think we’re seeing a lot more for mental health, definitely, but there’s still so many pockets in this country.

Zane Landin: And definitely in the entire world where mental health is not talked about. And in many cultures, mental health is not even a phrase. It’s not even a thing that you can to find in certain cultures. They don’t have a word or a terminology for mental health. So how in the world do you describe your experience if the terminology doesn’t exist? You’re gonna sound like you’re erratic or you have no idea what you’re talking about. And then you’re gonna be judged very negatively because of that reason. And people have their ways of addressing mental health in different countries. I’m not going to comment on them, but they are interesting to see the least.

Victoria Volk: Yeah and I see mental health as an everyone in you because we all experience periods of time, even if we don’t have a diagnosis of a mental health condition, we all experience periods of time where we don’t feel like ourselves, where our minds kind of take control and and are in the driver’s seat and and we need to find support or resources to get ourselves out of that. Did you mind sharing? Did you receive a diagnosis? And if you did, how did you feel about that? Was that a helpful thing? Or was that a did you have a lot of conflict with that?

Zane Landin: I didn’t get diagnosed so recently because I wasn’t looking for diagnosis. And I think sometimes you can look for one and you can request if you see a psychiatrist. I really wanna be diagnosed. I didn’t. And I was just looking for mental support community support. I saw, like, a psychologist on my call, university campus. I was just interested in how can I start feeling like myself again? How can I start feeling better again? So that was what I was focused on. And then when I my first job at university, which was the job in now because I got the job recently last November. I had a great benefit plan, and so I was able to see a psychiatrist And because I was moving away, I moved from California to Washington DC in last in January, it was such a new phase in my life, rose. Actually gonna be on my own points that I needed mental support. Even if I didn’t feel like feel it in the moment, it’s kinda nice to be proactive when you need it. So I do have a psychiatrist, and she did diagnose me with major depressive disorder, which is not a huge surprise. But it didn’t feel empowering like I thought it wouldn’t. Because I kind of always envisioned what it would feel like to be diagnosed with a mental condition. But when I was recently diagnosed, for one, I kinda had the idea that I already had something like that, so it wasn’t a huge surprise. But it’s interesting because I feel like when you have this speculation, you speculate what your body is going to, you’re speculating, what your mind is going to, and it’s still speculative. Right? And then when I finally got the diagnosis, I thought it was gonna be wow. I can finally see how I acted or my behaviors or my depression, how it’s linked to a condition. But then I was just kinda, like, It’s kinda sad though because if I didn’t have a diagnosis, it would be like you said periods of time. Now that there’s a diagnosis, like, this is something I have to kinda manage my whole life. So it was an interesting way how I felt when I was diagnosed. It wasn’t necessarily empowering at first. It doesn’t it does not Because, again, now I can actually understand where I’m coming from. And if I need that support, I can find people who experience that same condition And I again, I can create another community that way or enter one. So but

Victoria Volk: It can be your field. Yeah. It can be your fuel to keep doing what you’re doing. Because I feel like in the process of helping others who are experiencing the same thing you are, that can be healing.

Zane Landin: It can be because you when you hear someone’s story of how they struggle, you, of course, can see yourself in that story. Maybe not exactly you can’t visually picture-picture perfect that story because that one is experience is different. I was actually I did a television interview and is it February or March, and they had me react to a story of a kid who was suicidal. And they asked me how I felt about that story. And I was like, all I really could say was I really can picture myself in their story. And so I can understand where they’re coming from And now that I’m in a better place and I can help someone feel better about themselves or refer them to a psychologist because I am not a mental health expert. I’m an advocate, but I am not a therapist or a psychologist. I can’t give that kind of support, but I can refer them, and I can give them resources, and I can check-in on them in my own way and give them my support of what I can do myself and that does. That is a positive fuel because, you know, you are you are helping someone out of a out of place that you were at? You know how it feels?

Victoria Volk: Yeah. You don’t need to be leaps and bounds ahead of ahead of somebody else. You can be two steps ahead. To help them. You know? Yeah. I also saw I was kinda creeping on your social media a little bit. And I saw that you had had this experience of weight. And you’ve lost a lot of weight.

Zane Landin: Yes.

Victoria Volk: And I think it was as of July, you had lost seventy-five pounds is what you had written.

Zane Landin: Wow.

Victoria Volk: Yeah. So I wanna congratulate you. And a part of me wonders, like, because it correlates with your story. Right? Like, as soon as you sought out the support that you needed, you moved. Right? You started this new chapter. You thought, I think you were really empowered because I don’t think you would have lost this weight. Had you not felt empowered? Had you not felt like you can be of service to other people? And that you wanted to be the best version of yourself while in service of other people. I think there’s a really deep connection there. There’s a stronger y to the seventy five pounds.

Zane Landin: There is. And I will be honest. There was a time in my life where I focused solely on my mental health, if we shouldn’t do. Because, again, the trend. And what we say is mental health is important as physical health. But then you can, again, your physical health either of that, which is what I was doing. And so, yeah, there was a time where I just had a hard time walking. As a twenty-four-year-old, I shouldn’t have a hard time walking unless I have a condition. Like, as long as a condition, they can’t walk out. I understand that that’s just totally your story. I don’t have that. And because I don’t have that, I should not I should not be held back because of my weight. And understand that and I know people that do activism for, you know, bigger people. And I know what they say, and they say that the world shouldn’t being accessible or the world shouldn’t hold you back because you’re waiting. I agree with that. Of course, like, there are many spaces that you might feel comfortable as a bigger person So I do get that. I don’t think anyone should be discriminating against. But internally myself, I held myself back because of my weight. I didn’t want people to see me and I would get tired really easily. And so I held myself back from certain opportunities because of that. And then I think it was I don’t know I don’t know what happened. I just know that a friend of mine was on, like, this, like, diet weight loss plan, it was working. And she struggled a long time with it as well. I was like, it’s working for you and your whole family. Like, what is this plan? I used to learn more about it. And I ended up starting it. And, yeah, I just slowly not really slowly. I did lose weight pretty fast. From February to July, losing seventy five pounds. I definitely gained weight, and I’m not on the plan as much, but I’m gonna be back on it, and I’m gonna be I’m gonna take the initiative again and address it. I’m at a good place right now, but I still have some way to lose so I can be in an ideal way for like, the health goal that I have, but it was it was very difficult. And it was just interesting to see myself that way because I have seen myself as a big person my whole life. I was like, now that I’m slimming down, now that my face isn’t as, like, my face is, like, thinner now and it wasn’t for I just I see myself differently now. I have more confidence. And it’s kind of sad though that, like, you have to lose weight to kind of feel that way. But I think that that’s just kind of how the world works right now. And especially when it comes to weight and weight loss. But also, I surrounded myself with more people. The more confident I got, the more I surrounded myself with people that were in this space. And like you said, they gave me that support where I was like, oh, I should feel better about my body. Even if it’s not what I want it to be. It’s fine. And so there’s difference between being happy with your body and having certain health goals. I think everyone should be happy with their body. And if not, I hope they have the agency to do it in the right way. So I know many people that have done it the wrong way. And the wrong way is engaging harmful things with our body if it’s steroids or diet pills or whatever it is. I know every situation is different for everybody, but there are some things out there that I wish people wouldn’t do because you might lose the weight. But the after effects of the next couple years or your whole life, you might damage your liver, you might damage your internal organs, you might do these extraneous things because you wanted to lose the weight. And so I hope you don’t do it that way, which is why those, like, fat diets are kind of extreme and scary, which is I was happy the plan I went on wasn’t that at all.

Victoria Volk: And I think you bring up a key point to it in that it’s who you surrounded yourself with and there’s a quote or I heard some time ago, you’re you’re a sum of the five people that you surround yourself with. So if you’re surrounding yourself with people who love to just sit around and fudge and not move their body and and are kinda negative and see the negative and everything. I mean, that’s low vibe. That’s gonna bring you down. But if you surround yourself with people who are elevating you, who are at where you want to be, that’s an inspiration, that’s an encouragement, that’s the motivation that a lot of us need. Right? To get up and do it again. Right? Because it’s easy to start. But to cross the finish line, I mean, And there is no finish line in health. Right? And the thing is too is, do you wanna feel good? Or do you wanna feel like crap? Mhmm. And that’s I’ve been on my own journey. And I was just tired of feeling like crap. I would do wanna touch back on because you mentioned that you had the weight issue since childhood, and I know this is not what came on the podcast to talk about, but I feel like this I’m seeing a lot of ads, like, it was on Zenthick and so, like, I’m just going with the what’s in the news right now and you mentioned that you had this issue since childhood, and I’m curious, do you feel like I mean, did you have a difficult childhood or did you feel like food was how you coped and how you do continue to cope sometimes?

Zane Landin: Oh, definitely. I wouldn’t say that. Wouldn’t say I had a hard childhood. There were hard aspects of it with the weight being queer, having different theme, like, multi ratio all these different things, and I saw how my parents struggle with money at times. But I still was pretty blessed that I had the love and support from my family. And sometimes it wasn’t, you know, how I want it to be, like, every like, one of my favorite movies, I’m just gonna read this out. One of my favorite movies is Coreline. I think it’s a great story. But when you actually watch the movie, her family isn’t that bad though. Like, I think that her family is just stress. They’re, like, burnt out. They’re trying to they’re trying to put food on the table by doing the work until she’s not gonna live that she wants. When she said it’s a batch salad, I don’t think so. Just think that she’s just not getting the love that she necessarily needs it once, which is bad. But I went to essentially what makes you like, it’s not I think a lot of people experience that because it’s hard to, like, kind of replicate exactly how you wanna be loved by your family. I think it’s kinda difficult because everybody has such different needs and I don’t think every need is gonna be met. So for me, I wouldn’t say no. I wouldn’t say, well, I had a hard childhood, but there were hard aspects to it. But, yeah, I think that just my family has just a lot of members of my family on both sides struggle with weight, which isn’t surprising because a lot of people do. I feel like sometimes when I’m in the health spaces and I see a lot of work working out and it feels like, yeah, the majority of people work out and it’s like looking at it, letting I don’t think so. I think a lot of people do struggle with it, especially with, you know, how much fast food restaurants there are and how much people have to rely on it because sometimes expensive oversight. Sometimes health choices or healthy foods are more expensive. And so if someone is struggling to make an income to support their family, how are they gonna spend money on healthy food. And I know that there are other resources to get healthy food if it’s like a stipend or if it’s community garden, whatever it is.

Zane Landin: So I always encourage people to, like, seek out other resources if that isn’t the case. But, again, I understand that some people, they have to do that to support their family. I just wish there were more there were more like equitable ways to make sure that people are getting healthy food. Or just to have more options and what that looks like for their family. And so, yeah, my family struggled with that, but I don’t think it was essentially some of the stuff that we just ate like my mom always cooked and always had such a balanced meal, but it was always, you know, a lot of snacks and always the secondary foods that are around. So a lot of that is what people struggle with. And for me, I think it was yeah. I think I do. I think even recently when I was eating, when I was upset, I still am an emotional eater. And I thought even after a year, have I changed that much? No. Because I always think that I’m gonna be an emotional leader. And so, again, it’s, like, keeping yourself in check that when I’ve upset or if I’m depressed to kinda try to not fall into that temptation of just overeats because that’s a big deal. I don’t think a lot of people talk about it, and it’s not something mention a lot, but to me, it is an illness because when you look at alcoholic anonymous, when you look at that group, and we can recognize that drinking alcohol or consuming too much alcohol is a disease or it’s a problem that arises and there’s addiction with that. It’s different with food because it’s easy to think that we don’t need alcohol at all. But when it comes to food, we need food. So if someone overeats, you can just use the excuse and see it as, but we need to eat. So it’s okay if I’m eating this way. But it’s not, though. And overeating is a huge issue. Yeah. And that’s what I would say. And I wouldn’t say yeah. Sometimes I am in over a year and sometimes I’m not. I mean, no. It’s something I always am, but, I don’t always engage in over a year thing. So I’ve learned a lot about, like, balancing my meals and how to have, like, better portions, which I think is a huge thing that people don’t, that struggle with as well, like, having enough portions where you’re satisfied rather than I need to be over the top. And then in the way you’re engaging in, over eating and it can be addicting, very addicting.

Victoria Volk: Do you think it’s a greater struggle in the work that you do that you have seen at your for yourself and in other people that within the mental health space, in the advocacy work, do you see the connection of a lot of these other issues that kind of play into people’s lives like addiction with food or issues with food, what I’m getting at is, we have a relationship with ourselves. Right? We have a relationship with ourselves and our inner child and we have relationships with other people and we have relationships with alcohol. We have relationships with food, with money, with all these other aspects of our lives. And so do you feel like especially when it comes to mental health that and why it’s so important is because it affects everything in your life. Mhmm. Have you found that to be true for yourself and for other people that you come in contact with and the work that you do?

Zane Landin: I do. And that’s why in like, the mental health space, like, there are a lot of research and discussions on eating disorders. I don’t know what’s on my head. I do not know if over eating is considered an eating disorder, but It doesn’t matter. It is some form of engaging in a harmful eating that’s not good for your body. So that yeah. I do think that and that that sounds with so many things. If it’s, like, if it’s escaping your emotions and using food as a vehicle or if it’s not eating. And is that’s a way to feel control or a way to feel like you have some control in your life is to control your eating or don’t control reading or decide not to eat. Again, none expert, there’s just what I’ve observed and what I’ve seen. And so I’ve never been diagnosed with any disorder. I don’t have one, but it also stems from body image issues. Sometimes my partner comments and says the way I act and the way I perceive my body is like I have body dysmorpnea. I don’t think I do because it’s not I read a bit about it and, like, it really needs to impact your day to day. It doesn’t impact my day to day as much. It only really impacts my day to day when I see myself, and I really don’t like what I’m seeing. I think the biggest issue is I need to also see the fiscal evidence that I’ve changed because sometimes I look at my summoner here and I’ll be like, I am the exact same. I haven’t changed. What’s up with that? Like, I’m really frustrated right now because I’m not seeing a big change. And I go into my phone. I’m like, okay. There’s a difference. Alright. I see it, but it’s sad how, like, oh my goodness. Like, how wired our brains are that we it’s like we cannot accept progress when it happens. And to the point where we physically don’t even see a change, I think a lot of people do that, especially not even with their weight or their body, but, like, just even their accomplishments. Like, they’ll probably something so amazing and they’ll just downplay it. And I don’t know why. It it makes me makes me kind of sad. And I do that too. Like, we all do it. I think many people do it. I don’t know many people that don’t. They downplay their accomplishments. And I think because in this culture, I think that we try to reward humbling behavior. That’s on humbling though. I don’t think that’s humbling at all. I actually think that’s not what Humble is. I think humble is I did do a great job, and I’m really proud of it. Thank you for saying that. You don’t have to say that whole thing. But you can just say, well, thank you so much for acknowledging that. I think being humble is recognizing that you have these important strengths and that you do reselling to the table. Being humble is not, oh, I didn’t really do that great of a job. It’s not that great. I could do better in said, no, that’s not being humble at all. You’re downplaying your accomplishments. And in fact, you’re just kinda disempowering yourself, and that’s not being humble at all. I don’t think so.

Victoria Volk: I think a lot of us in general, I think we’re hard we’re wired to point out the negative and to see the negative. Right? But I think there is actually a population of people. I mean, if you’re interested in human design, I’ve been kind of looking into human design. If you haven’t, I believe it’s an open g center, which oh, most people I think the majority of people have an open g center or a will center. It’s actually where we feel self worth. I think a lot of us have that open center. And when you when that is undefined and it’s open, we do have an issue of self worth. I have it defined. And so to recognize, like you said, I think it’s recognizing what we bring to the table, what we have to offer, and owning it, owning that as a gift that has been given to us and recognizing that you are different, but you have different gifts, you have a different skill set. And together, we can move mountains. And I think that’s where we have to recognize that all of us have a different gift to offer. And it doesn’t make one better than the other. It’s just different.

Zane Landin: I wholeheartedly agree with that. And I watched, like, a really great anime recently that the whole premise was about all life is created equal. It definitely dove into, like, medical developments, which was so interesting. But I love the idea that all lines are created equal. And that sounds a little self-explanatory. Right? But I don’t think people completely realize that. I think some people are gonna hold people to a higher standard or there’s a we still organize ourselves and hierarchies and that some people’s voices are more important. I just I don’t agree. I don’t think anyone’s better or worse. I think everyone, like you said, provides something different and unique to the table. It’s just about recognizing that, but also on the other side, making sure that you are encouraging that, making sure that you are encouraging that they are here for a reason and that their voice isn’t put in. I think a lot of I think a lot of parties are, like, involved here. I don’t think it’s unique to realize on your own. I think we also need people in our lives that are gonna encourage it. Kinda goes back and say, it’s running yourself with good people. They’re gonna uplift you and you also uplift them.

Victoria Volk: Especially when you are a child. Right? I mean, because that’s when a lot of these insecurities and mental health issues kind of take hold. In the grief space, the grief work that I do, and what I’ve learned about grief is that by the age of three you’ve already learned seventy five percent of how to respond to life. The rest comes by the age of fifteen. Those formative, difficult, challenging years. But by age three, I mean, little children are literal sponges. They see and they take in and they hear everything. So let’s shift gears. And talk about really what brought you to the podcast. And I love the advocacy work that you’re doing, and that’s why I’ve spent so much time on it because I think it’s important. And I think the the more that you invest in yourself the more confident that you become, you can move mountains. You can. One person can make a change. And even like you said, even if it’s just one child that you check-in on or one friend that you check-in on, we never recognize even maybe it’s insignificant to us, but it can mean it can be life changing to somebody else. We don’t celebrate those things either. And often, we don’t even know because people don’t share that either. Right?

Zane Landin: I wish we did. I wish we more openly had gratitude. I’m not saying people don’t have internal gratitude. Mhmm. But I wish they externally, like, vocalize our gratitude. For the people in our life more. And I say, wait. But you know what? I could do that better too. Like, definitely, I think we I really do think we all can. I think it’s something I wish we would practice more. And that’s why when you enter a lot of spaces of self-empowerment, gratitude is such an empowering tool. Not a tool. But just yeah. I kind of it. But just the practice of showing gratitude is what I mean. And so yeah. And I agree with that. It’s interesting. It’s I think sometimes, you have a hard time showing affection to people from what they’ve done or what they’ve accomplished. And I don’t know why. I think that’s something that hopefully is changing especially when COVID happened. And I feel like people were more aware of people’s circumstances and we’re, like, one more compassionate of their life outside of work and all these different things. And so I wouldn’t say that means like the world’s becoming more compassionate. I just think it’s becoming hopefully more open. That it has before.

Victoria Volk: There is hope for that. Right? I have a frame picture. It’s by roomy. And it says, if you only say one prayer in a day, make it. Thank you. Mhmm. So when we think about gratitude, let’s talk about your mother because it sounds like to me just what you mentioned so far that she was a very integral part of your life and was obviously a very devastating loss for you. And in twenty twenty one during COVID, nonetheless. Right? Because that would have been during COVID.

Zane Landin: It was. Yeah. I I believe the vaccine hadn’t even been rolled out at that point either. What happened was my mom always had problems with hernias. And, yep, that was it. She had a problem with another hernia that came again. It felt like no matter how her politics or she did, she always had one or had one forming or however it works. So she was having pains again with it, and they decided to take her to urgent care. And so they took it to urgent care, and then they did the surgery. But unfortunately, she just didn’t wake up. Mhmm. So that that was it. It yeah. It was pretty devastating. And I remember I remember even telling my mom just, like, don’t even worry about whatever’s coming up. Just try to focus on your health and the pain right now and just how to make yourself feel better because she was worried about a lot of different things, of course, because that’s kinda how my mom was. So it’s kind of sad to think of it that way. And in retrospect, to me saying that because, she has nothing to worry about. So I just kinda well, depending on what people think. I do think that there is an afterlife. And I do think that, you still worry when you’re out there because I do firmly believe that we greet them. They grieve us. So if there is an afterlife, my mom is grieving us. Because she loves us, and she has to wait a long time to see us again. Even though, again, it’s so complicated because, you know, I do believe that we’re always there. But being face to face and actually our spirits touching in a the way we’re on the same plane now, because we’re in different planes now. And so it is a different relationship. So yeah. It was definitely very hard and I’m very I have a lot of gratitude that my mom was always there for me and I do love the prayer saying thank you because just thinking my mom for every single thing she did, and that’s why it was probably, it probably will be the hardest that I’m ever going to experience. But who knows? Because in my opinion, when you experience death, you think about all the ones called the people died, like, recently, my grandpa died on my dad’s side. My grandpa died on my mom’s side. And yeah. It just makes you think, like, oh, my mom’s not here either, and I have to think about all the deaths that I’ve experienced. And, again, I’m also thankful I haven’t had to experience that many deaths. But one of the first ones of someone I was close with had to be the person I was close with, it’s kinda difficult. And I think that you can prepare as much as you can. Like, I think people like preparing for grief, I don’t think he really can. Like, I think some people go, like, you know, how do I prepare myself for? Or does it feel like can’t explain how it feels. I really can’t. I can’t at all. It just feels like a sharp pain in your chest that’s removable and you can’t do anything about it. And it’s there forever. And sometimes it’s sharper, sometimes it’s not. And it’s gonna depend on whatever triggers it. If it’s a smell that reminds you of them or if a song you’ve heard, whatever it is, it’s gonna trigger that sharp pain, and it is difficult. And it is again, it’s always there, and you won’t really understand until you reach that point. And again, there’s also no return because, again, the moment, I think you lose someone that’s close to you. I mean, you inevitably change. And that’s okay. I think that’s fine. Because some people say, since so and so passed away, I’m not even the same person anymore. That’s okay. Because how could you be? Like because of what I think is interesting about grief and why we grieve people is they’ve had such a monumental, like, a impact on our lives and our identity that our identity surrounds ourself with that person. And so without them, how do we even understand your identity? And it’s and I think it’s coming to terms with no. Your identity is just different now. And it is you are a different person. Doesn’t mean you’re radically different? No. You might be though. You never know. Know, the only thing is, like, except that you are a new personnel and your perspective is very different, probably. And it’s a very difficult thing. Again, you have to come to terms with the person isn’t there anymore. And you have to kinda figure out what that means for you. Maybe you don’t think that. Maybe they are there for you still, but for some people, it feels like they’re just gone. And I know some people and connect with them still. Like, some people have that kind of gift. I’ve had different instances where I’ve had, like, pretty profoundly dreams about my mom. Some were great, but there’s one that was so so, like, lifelike. It felt so real that there’s no way that that was just a dream at all. I actually did a podcast where I talked about the dream and what it meant. And the dream was me just, like, comforting my mom. Like, I went into this space where it was a dark room and she’s hunched over, but she’s kinda lit up, like, a light. And I comfort her And then I kinda just slowly wake up, like, a final goodbye that I never got to have. Mhmm. And it felt so strange. Like, I woke up a piece of it than I ever had before, and I was like, there’s no. No. No. That that was some sort of that was some sort of communication there. There was no way that that was a dream. Well, maybe that’s what all dreams are. This so of it added this stuff and so that’s why I find it so interesting, but the grief alone is very difficult. But as you can see, I’ve had a lot of things that have affirmed how I feel about my momentum and how I do believe that there is more out there that’s for me though because I know that everybody believes that. And to me that would make grief a lot harder, though, if there wasn’t anything else out there and I really wouldn’t have a chance to see them again, but I also don’t know. I’m not gonna know till, like, I cross that path like we all will. And I find it interesting, like, death is the only thing that I think we’re guaranteed in life. Yeah. And then it’s interesting. I know I mean, yeah. They’re I don’t know if we’re really guaranteed anything in this life. Like, so are we guaranteed love? Are we guaranteed support? We’re not at all. I think the only thing that we’re guaranteed is when we die. And so I think it’s something we all have to come to terms with because we’re all gonna face it.

Victoria Volk: You said a very key thing there. You said there’s no guarantee of love, there’s no guarantee of, you’re saying there’s no guarantees of all these things. And my thought that came to my mind was especially if we’re not open to it. If we’re not open to having this continued relationship with a loved one who has passed, we are not going to have a continued relationship with the loved one who has passed. Mhmm. But to understand that that’s possible, regardless of what you believe or think spiritually, god, whatever afterlife, that relationship does continue because you’re still gonna be thinking things, you’re still gonna be feeling things about that person. That relationship continues and that’s up each of us to decide what we want that relationship to be, how we want that to look. Do we want to be pulled back in time to this devastating moment when that person passed away or this traumatic thing that we saw or replay this the negative. Right? We replay the negative in our minds over and over and over, or we can choose to work through and process all the things that we didn’t get to communicate, all the things that we didn’t get to say all the things that we didn’t get to experience and change that, change the narrative, change the story that replays in your mind. So instead of feeling sadness and you’re gonna feel sadness, but instead of being pulled back in time to that deep depression, state, or this deep hole, every time you smell something that reminds you of your mom or every time that you someone says something or mentions her name or says her name that you’re pulled back to that space instead of

Zane Landin: Yeah.

Victoria Volk: Oh, thank you mom for this message. I know you’re there. I needed that comfort. And perhaps that dream, and I’ve heard that I mean, the idea is that, you know, I’ve had psychic mediums and things on my podcast before, but I’ve heard that when someone comes to you in a dream, it is for you. It is for you. And sometimes too, I’ve heard that that’s an indicator that you need to pray for them. I don’t know. It’s your dream. It’s all of a and our our relationships are individual. Right? So all of us are gonna have these unique experiences based on our relationships. I mean even less than loving relationships, you can have experiences that are so profound that you can’t explain. And put into words.

Victoria Volk: Something else I’m trying to put into words is my experience with our new sponsor, Magic Mind, Magic Mind is a patented blend of thirteen active ingredients containing things like matcha, which supports energy, bacobá Monieri, which I’m probably pronouncing that wrong, but that supports attention, cognitive processing, and working memory, which Hello, I personally need Lion’s Main mushroom, which helps to balance mood and improve cognition, turmeric, which supports healthy blood flow to the body and brain, phosphodilisiran, which supports memory and attention span. Again, another word I probably botched, Ashwa Ganda supports the reduction of stress, and rhodiola, rosacea, and vitamin B complex, which manages fatigue, supports energy, and boosts endurance. So I’ve been taking this little two ounce shot for the past month or so and it’s only three grams of sugar at twenty-one calories, but this little awesome shot is really helped me bring some calm into my life so I can be productive. And that’s the biggest thing that I’ve noticed is this calm that comes over me. When I feel like I’m getting a little bit overwhelmed. And as a creative. Right? We have a lot of to do list and a lot of things that we’re trying to create and put out into the world and as a podcaster and and especially to add in grief and add in just the curve balls of life. Right? Like, we can use all the help we can get to feel like we’re on top of things in our life because when we have so many balls in the air, that only adds to our stress. It only adds to our anxiety. And so to have this little two-ounce shot to support whatever it is. We’re trying to create and do and to just be just to be a better version of ourselves, be a little bit more well in our mindset. Head to magicmind.com/grievingvoices. They have an option for us subscription or you can just order one time to try it out. Either way, you get a discount of twenty percent with the coupon code greeting voices, all caps. And when you get a subscription, you actually save more as well. So again, magicmind.com/grieving voices. Now let’s go back to the conversation with Zane.

Zane Landin: And what I also do love about this idea that we are that death is guaranteed. Because, again, I think we have a hard time understanding that we are all legal. I think some people will, again, look at social identities, different circumstances, and that was what makes us different. And of course, it makes us different. But in reality, we’re not different. We’re all the same species. And then when we die, it’s what equalizes us.

Victoria Volk: We all got the we all got the dash on the tombstone. Right?

Zane Landin: Right. And I find that interesting because I saw a video of this man who died for twenty minutes saying he recall this entire experience. It’s a very popular YouTube video. It’s a very beautiful experience and it’s just like interesting that we all do reach that path one day and we’re all equal in that in that front. And is there something beautiful about that that we go back to a place where we’re sphere or wherever it is or we’re back here on this planet, living another life. I don’t know, where I watched the video on how we are just one being, and we’re just recycled into many people, but we’re all just one energy, which is so many theories, so many interesting thought processes in that one. But, yeah, I always find this stuff super interesting. And I like the idea of people talking more only about grief because and that’s what gives us support and the tools to understand the relationship with them. So, like you said, we don’t travel back in time. And we’re obliterated honestly with the sadness. Yeah. And there’s always that quote. I know people don’t like it, but I do. It’s the quote that don’t be said it ended, something like that. Don’t be sad it ended, be great for what happened. I understand that not everybody wants to hear that, especially, like, also please be mindful of what you say when someone does lose someone. It’s and to me, it’s not your place to ever say anything about that person, like, like, how you should feel. Because, like, when someone go, oh, they’re in a better place. Okay? You gotta understand that when someone isn’t a very vulnerable space where they just lost someone, they really don’t wanna hear that. You know? Unless they

Victoria Volk: They should be here with you. Right? Yeah.

Zane Landin: Yes. And so no. That’s absolutely right. But so I think you want to understand that, you know. Sometimes the best thing to say is nothing. I think when someone is going to agree with process, just just show up for them. You don’t have to give them advice. You don’t have to fix their problems because you cannot. You cannot do that ever. And there’s no point in trying to set up yourself for failure because you will fail. There’s no way you can ever do that because I know some people try to do that. Like, let’s get you in a better mood. It’s not gonna happen. You can do things to maybe support them. But sometimes in that moment, just be there for them. You don’t have to try to make them happy. You don’t have to try and distract them from their grief. It’s impossible. They’re going to always be thinking about it. But if you can show your support and your positivity, and the kindness. I hope that that will help them. And that get that probably is a lot more than you think it is. And then they get to a place where if they ever need your support, they can reach out to you. So that’s what I would say. What’s interesting is I find it easier to have conversations with people that have lost their parents. I saw someone post recently that they had a hard time going back to the gym. Since their father passed away, and I didn’t even realize that. I didn’t even realize that their father passed away. And so I even reached out and I said you know losing parents is so damn hard. And I hope you find some peace right now. I hope going to the going back to the gym like you’re doing is gonna give you some peace because that is a hard thing you’re you have to deal with, and you only experience it two months ago. And I’ve had almost three years to kind of understand it. And even still, I don’t really fully understand it because it’s like a lifelong thing you have to figure out. And that’s why I also believe that like, when people say grief gets easier with time, I wouldn’t say it gets easier. I would just say, you’re used to the pain at this point. Is it easier? No. Because the pain is always a sharp pain. It’s like you have a thicker coating now, but it’s still there and it’s always gonna it’s always gonna penetrate your body. It’s always gonna make you feel bad or you have this pain. But, yeah, it’s again something that just doesn’t go away. I see it as almost have not exactly. But, like, having a mental health condition. It’s like that. Not the same, but that it’s something that’s lifelong there is actually, like, a condition called, like, prolonged grief, which is an interesting one. It’s kinda like saying that you’ve had this long period of grief, and you should be at point where you’re getting over it. I don’t think I fully agree that that’s a condition. But I do like I don’t know. It’s interesting. I don’t go into, like, an interesting thing here, but I do like the idea that there is something there with grief because I don’t think that there’s enough work for it, especially in the workplace. Like, if someone passed away and, like, okay. You get three days off to figure out everything else. Like, what? Like, no. That’s why I actually understand, like, medicalizing grief is interesting because maybe we can convince employers, no. I mean, like, time off. I need to take a leap of absence because this is really difficult and it’s impacted my body and health every single thing. And so I also wish grief was taken more seriously on in that way. So when you do experience grief that in the workplace, they understand. And they don’t come with the attitude that it’s been a week. You can come back to work and you’ll be fully efficient. Right? No. That’s not how it works. And someone might need three months. And so that’s the only reason why I could ever see why it would manifest grief only in that way, I would never want it to be a negative thing. Oh, that all makes sense.

Victoria Volk: Yeah. And here’s the thing with grief, like prolonged grief, or complicated grief, or complex grief, it’s all grief. Grief is just grief. Mhmm. We don’t need to add any labels to it. Right? It’s almost like a mental health diagnosis. What did that do for you at the end of the day? Right? You know what you’re experiencing? You know what it feels like? Can the label can be empowering. But when it comes to grief, that’s not empowering. No label for grief is empowering. There isn’t a single one that’s empowering, and the thing is we’ve all learned these myths of grief, and time heals all wounds is one of them. And a time doesn’t heal, it’s the action that you take in time is what heals. You got to, like, one of my one of my guests a long time ago, and she’s gone through the grief recovery method, which is the program that I facilitate that I worked through my own grief with because I lost my dad when I was eight. And she says, when you lay, you decay. And that’s the truth. When you lay, you decay. And when you are deep and grief, that’s all you really wanna do. And that’s that’s okay for a time. But if you find yourself laying and laying and laying, not living life to its fullest not living out your fullest potential. That’s not living. And I know so many people, like, even when my dad died, a part of my mom died with him. She was a very different mom. I imagine your dad is a very different dad. Maybe for the better and maybe not so much. It depends on how a person chooses to respond to that. Do you choose to get support and resources and help and talk about it? Or do you do what society has taught us to do and to grieve alone, replace the loss, try replace it with food, alcohol, sex, gambling, whatever it is, whatever advice it is. Right? Mm-mm. This is why I started this podcast. People just don’t understand grief. Even therapists, psychologists. It’s not even in their schooling, not even in their education.

Zanre Landin: Really?

Victoria Volk: I’ve been to suicide prevention forums, rooms of social workers talking about suicide prevention for military and veterans. Not at once did the word grief come up? Not once, don’t you think grief has a little something to do with suicidal ideation? With the experiences that military personnel have experienced on deployments.

Zane Landin: Yeah.

Victoria Volk: I mean It is a no brainer. Right?

Zane Landin: It is. Yeah. Wow.

Speaker 0: And considering the life that we, the lives that many of us live, there’s so many chronic issues whether it’s the economy, whether it’s, your personal circumstances, whether it’s sit and watch the news, like, oh my gosh, and then children are watching these killing games. That’s all the games are nowadays. It’s just killing each other. Right? Like, all of this is information that we all take in. We’re looking at toxins and we’re taking in toxins in all kinds of ways, day in and day out, so no wonder we’re all freaking depressed.

Zane Landin: Yeah. Yeah. Well, then I think people question, yeah. I think it’s not when I hear this because, you know, least I see that. At least my generation Generation Z. They’re talking more about mental health. And I know sometimes they’re viewed negatively for it, or they’re the emotional generation. Now I hear people say, well, my generation, we just we just do what we have to do. Is that really a positive message though? Did you really wanna do that though? That’s what I question people. It’s like, I understand that’s what you had to do because your generation, you really did not talk about this kind of stuff. Mhmm. But do you really think that helped you? Like, if you really could live in a generation where you could be more open with what you experience. Why don’t you wanna live in that generation? And if not, well, okay then. But I hope a lot of them say, yeah. Actually, I would like to live in a generation more. I keep you open with my emotions. I could be more emotionally available for my partner. Or my friends or whoever is in my life that I love, and I could show up differently if you feel like you could. I mean, again, if you maybe you should have been the best way you could. You never know with a certain people. Maybe they did. But I like this idea that as a culture, we’re becoming more open about grief, and I see a lot of grief podcasts. I’m like, I’m so happy that not only I can share my story, but all these other people and all their guests get to do it as well. And someone is facilitating that conversation because and I think this is why grief is so hard. Not just grief flow. That’s already hard. I mean, that’s that’s never really gonna change. No matter what, but I think the if we live in a culture where we have to bottle it up and we can’t express it, that makes it even harder, so much harder because where do I go? Nobody understands. But maybe they do. But maybe they’re not open about their grief. Maybe more people are open, you’d be like, wow. Actually, you understand grief. You do too. I didn’t even realize, like, let’s Let’s have a community. Let’s actually host a brief chat. Sounds weird, I know. But something that we can continue in the conversation and you just provide, like, a peer to peer support on when you have this trigger. Again, we can’t provide expert opinions because we’re not experts. Like, again, I’m not an expert. Unless you are, unless you’re a grief counselor, you have that training. That’s not what I’m saying. Like, just peer to peer people that just just experience it on the everyday level.

Victoria Volk: Well, and it comes back to I mean, and how you can support and help other people as a griever. You can speak from your own experience. Sure. But it’s learning about grief itself. And I just wanna say, I highly recommend the book, the grief recovery handbook because you will learn more about grief than you’ve ever ever learned in your life. Even with experiencing it. It just brings a better level of understanding of why you feel the way you feel, what you’re experiencing. So I highly recommend that book or the first twelve episodes of my podcast is all about what we talk about in grief recovery. Because I fully I will say this. Recovery is possible. I’m a testament to it. It was it derailed most of my life, my grief. My life changed when I decided I wanted to change it. And we all have that power, and we all have that agency within ourselves.

Zane Landin: Yeah.

Victoria Volk: And just meet ourselves where we’re at with compassion. But I think we all have a personal responsibility because we are all part of a collective. Right? And so if I can become the best version of myself, I can show up better for my neighbor, for my friends, for the cashier. I don’t have to be an asshole to the cashier. Right? Because of whatever I’m experiencing. There’s no excuse for treating others unkind.

Zane Landin: Yeah. No. I agree. And I really wish I did not see that normalize, and it kind of is, where if someone is trained so importantly, it’s like, have to like, oh, they’re probably going through a hard time. It’s like, I’m at this place where I remember saying that. But I was like, I have empathy. I understand where they’re coming from. And it’s like, no, that’s ridiculous actually. I should not know where you’re coming from because you should have no right to treat someone like that. I don’t care what you’re going through. That sounds kind of heartless. I know. But why? Why should you have the right to treat me like that? I didn’t do anything to you. That’s your life. That’s the people in your life. That’s up to you. I had nothing to do with it. But I understand, like, sometimes people just lash out. Sometimes people have those moments. I get it. If you’re perpetually being like that, and you’re using the excuse of what happened in your life, it’s not fair because I don’t know anyone in this world that has not experienced any sort of struggle. I’ve never I don’t know anyone that hasn’t experienced anything. That’s not possible. Even someone that’s the most privileged, the most rich in the world, whatever their privileges are, they have something that has helped them back. They have something that has that they have a fear. Everyone has that. And so I don’t ever agree with, you know, you treat people warmly because of how you’ve been treated.
Because you are no different from the person that wronged you as well then that’s how I think. I think that, again, if you’ve been treated a certain way and you treat other person that way, you’re just creating a cycle of negativity and darkness and you’re no better and that I think is sad because to turn from being a victim to a perpetrator is a sad reality. And it happens, especially when people are abused, like, sometimes they become abusers, and I don’t know why. I again, I don’t know a lot about it, but I’ve heard stories of that that happens to people. Or their victims and they put their any positions where they’re victimized again. And it’s just such a sad reality but it was a little randy. But just kinda going into what you were saying that, I agree that there’s there really is no excuse to treat someone like that because, again, all of us have our issues, all of us have our challenges. But if we show up in such a positive light for someone else. I think that we can inspire others to be kinder, to be better, and again, what are you accomplishing by treating someone like that? What you need besides bringing them down with you? And that’s what some people want, though, and that’s sad.

Victoria Volk: And that key thing you said was, it is it’s it’s up to us. Right? Like, it’s it’s up to each of us. Like, we all play a role.

Zane Landin: We have yeah. I think some people don’t realize that. We have our triggers. Like, things will not trigger us. Like, well, that’s my trigger. Okay? But it’s not natural how you react. No. I think that again, actually, you’ll have a trigger. Something would trigger you. But there’s no there’s no way of saying this is how I’m gonna naturally react though. It’s an eight. No. It’s not. I think the trigger saying that happens. But again, if you choose how to react, you choose how to treat people, that’s exactly what you do. There’s nothing that is involuntary like you’re saying it is. Because I know people that don’t say, if I react negatively, it’s because of this, and I have my right to act like that. Sure. Everyone has a right to express how they want it. I don’t think you have a right to her other people though. That’s not fair.

Victoria Volk: And that comes down to, again, like, with with grief. Right? Because, I mean, you can become a you can become a griever who’s an asshole. It’s possible. Right? But if you work on yourself, that’s the only thing you have control of this yourself. Like, the environment And then the world around you is not gonna bend to your will. The only thing you have control of is your free will and what you decide to do and the actions that you take or don’t take, which is a choice too.

Zane Landin: I see that a lot now, and I thought we were almost past this. Where we we ship our own, like, we choose how we wanna be and we, you know, we kinda disassociate from what people say about this. We move away from how people judge us and perceive us. But I still see that though. I still see people that and I do sometimes, but I know people and I see even content creators that they thrive on that validation almost constantly. And without it, I don’t even know how you move forward if you don’t have it all the time like you accustomed yourself to. And so I know that people who experience or around in their life, and they want validation all the time even from strangers. And it’s like, how are you going to how are you going to feel better or be better if you don’t have that validation one day? And I see that’s

Victoria Volk: I think that’s that’s the voice of a victim. That’s someone who feels like a victim and who has an attachment to suffering. And that was me for a long time too. Like, I just thought, like, my life, I’m just destined to suffer because it was just one hit after another after another after another. You know? And that’s that is life. Yeah. It sucks. Life sucks. It surely does suck.

Zane Landin: Yeah.

Victoria Vlk: It can I mean, if that was my perception? Right? Like, life just sucks. This sucks. But we have a choice to sweep our own doorstep or not. And it’s not up to it’s not anyone else’s responsibility to make us whole, to make us happy, to fulfill some whatever it is that we’re trying to fulfill in our lives. That is our responsibility. There isn’t enough personal responsibility in this world. And I think that’s

Zane Landin: I agree. And that’s again, like I said before, if that’s impossible. Like, me helping someone who’s grieving, I cannot fix your problems. I can be there. I can try to support you. But, again, at the end of the day, you kinda have to do that for yourself. And, again, it’s also it’s not right for you to put the burden on someone else because they should not exhaust their emotional needs to help you. So you need to be fair to the other person as well that you are not mentally exhausting them by putting a burden on them fixing your problems when, again, you need to do that.

Victoria Volk: And this is why I’m so glad the conversation went here, and this is why it’s so important to seek support from somebody who has no skin in your game. Someone like me, I’ve you know, I don’t know you from Adam. I have no skin in your game of life. There’s nothing you can say to me that’s gonna make me turn on you or you know what they mean? Like, we don’t have this intimate relationship.

Zane Landin: Yeah.

Victoria Volk: And I can go to bed at night and what what is yours is yours and what’s mine is mine. And it’s taken me a long it’s taken me a long time to be able to do this work and to get to this point, but it’s because I worked on myself, but we all have that capability. That’s what I’m trying to, like, just scream to the rooftops. We all are capable of working through this the most devastating parts of our aspects of our lives, it’s possible.

Zane Landin: Yeah.

Victoria Volk: And So what is one tip that you would give a hurting heart today?

Victoria Volk: Okay. Let’s see. I guess I would say, take it one day at a time, and that maybe one day, you’re having a really hard time. You think it’s always gonna be like that, but take it every day because you never know the next day is gonna be. Maybe you’ll feel better. Maybe you and I hope you have I will say the courage it I think it is very easy to stay in the darkness. Mhmm. I understand. And then he was, well, why do you wanna stay suffering? There is an attraction to suffering. There it is. I know that that doesn’t sound right, but there is. I’ve seen it in many places in society that we wanna hold on the negative as much as we can. And so it is very easy to stay in that darkness. And it is someone to learn. And I do think that there is actually, like sometimes that there it’s like a good feeling to be sad. It’s interesting. It’s not that it’s happy. Besides when you feel said or you’re crying, it can feel kinda good. It’s interesting. I know it doesn’t sound right.

Victoria Volk: But crying can be a release. Right?

Zane Landin: I think that’s

Victoria Volk: They’re all valid emotions. It’s not, like, it’s bad to be sad. And that’s not what I’m saying here at all. And I don’t think you are

Zane Landin: Oh, definitely. No.

Victoria Volk: It’s information. Yeah.

Zane Landin: And it still has a balance. I don’t know if there’s anyone being sad or being negative, grabbing that depression as long as you hopefully have a balance of having a that positive energy in your life too. Don’t avoid yourself with all the negative either because I think, again, a balance of union and union you need you do need both to to be the best you can. So that’s so, like, what I was saying was, you know, it’s easy to stay in that darkness, but I hope you find the courage to get yourself out of it and not completely because that’s it’s a slow process. And if it’s reaching out to someone or doing activity that you used to like or even visiting a burial site. It means for some that could be very very positive for some people or maybe it’s just taking the day off or going to the beach. Anything you think is gonna calm your mind? And again, take it one day at a time. You’re not gonna come out of the darkness or feel the best and most positive person you were before, in just a day. It can take a long time and maybe he won’t be there one day like you were before, and that’s okay. That really is.

Victoria Volk: So what is one memory of your mom that when you think of it or or maybe there was something that you did together when you think of it or when you find yourself doing it that you feel good and you think of her?

Zane Landin: I think about My mom was a huge cook, and she didn’t bake that much. But when she did, we always loved it. But I remember I was like, I really wanna bake something. I love watching baking shows. There’s something so comforting about that. And I just wanna start doing it. Like, I wanna start doing that. And so we made these really nice chocolate chip cookies and we tried, like, three different types of chocolate in it and that was very fun. And it was the first time I got to bake something because, again, my mom kind of always did it. And so I never really got to help. And if we tried helping, we just kinda got in our way. So we kinda just stopped didn’t really get to help as much. And so what changed is interesting is I love that so much. And that was, like, honestly, the month before she passed, actually. Because it was in it was Christmas time and she passed in January. But now what’s interesting is even going back to the weight loss. When I started the plan, I needed to cook my own food in February. Which was like daunting. I was like, okay, cooking my own food. I’m a little scared. I would just rely on frozen foods that I would just heat up. So when I cook my own food, it was a slow process. But since February to now, I cook all the time out. I wanna do it all the time. Like, I was like, should I even, like, change my career and when I’m doing it and start cooking? Probably not. But there was a look at my job yesterday and I made lobster mac and cheese and it was okay to be honest, no bragging here. It was very good at the time of my recipe. I found it online, but I changed a lot of things that I wanted in the recipe. But I was very happy with it and it was like, I don’t get to click bottom for other people, especially at my job. That was the first time. But now that I get to cook and I get to big stuff, and I made chocolate chip cookies at home recently when I was back in California. And I made a post. I was like, no. I don’t. I didn’t really think about it. It wasn’t really conscious, but why am I feeling sad doing this? I don’t really know. I wasn’t, like, really sad. I was just it was, like, a sadness, but it was also comforting. It was very weird. But I was, like, it is a sadness, but I also love doing and I had Harry Potter music playing in the background of my mom and I loved watching and listening to the music from those films and when I made them, I was really happy how they turned out. And I was I just kinda reflected on that, and it was just a it was a sad thing, but it makes me wanna do it so much more now. Because, you know, I get to kinda cook with my mom now. And I don’t have any regrets, but I do wish I got into cooking before, so I was like, my mom was always like, every single time we watched the movie, we were a man and cook for his wife. She was always so happy. She’s like, I want someone to come in and cook for me. My mom was just always the cook though, and so wish I knew how to cook because I would cook her so many things. Anything she wanted, I’d be so excited to make because I love doing that. So not a not a regrets. I don’t have any regrets, but that’s one thing you know. I kinda wish that I did before, but now I do it all the time, and I wanna do it all the time. And when I get to see my mom, it’s I could just, like, tell her about all the things that I’ve I’ve made, maybe not all of them. There’ll be a lot at that point. And I just hope that when I get to taste it myself, she tastes through me. I hope so so that she can taste herself. I hope so. I hope that’s how it works.

Victoria Volk: So I just had a thought. So does she have a lot of her own recipes that you have?

Zane Landin: No. That’s what’s said. It’s okay though because I have an idea of the stuff she made and I can always find it myself, but that is one thing I tell people, chronicled your family, whatever it is, like, maybe even, like, do an interview. Like, do a video interview and, like, have them talk about their life. And even if it’s, like, couple hours, like, you have that chronic illness now of their life. And it’s so much better than you imagine what it was or trying to remember what that story was. Now you can actually pass it down that’s the same with cooking. It’s like, please, get their recipes, have them write it down. I know it’s in their head and they don’t write it down, but have them write it down so you can chronicle their wisdom.

Victoria Volk: There are apps for that actually. One, I had a guess yeah. I had a guess on my podcast some time ago. He developed an app called AfterCloud.

Zane Landin: Oh, wow.

Victoria Volk: I believe that’s what I think there was a branding shift, and I think it’s still called AfterCloud. But I’ll link to it in the show notes. But, yeah, there and there’s actually other apps too out there that help you to document just what you just said to create a family heirloom of sorts. But I can imagine that you know somewhat of what she made and how you can make it and yeah. And then you could share it with your neighbors or share it with, you know, the cookies, especially, like, share it with other people, maybe another griever, a taste of mom’s cookies. So

Zane Landin: Yeah. It’s so interesting just being in a place where I didn’t cook, and now it’s all I wanna do in that. That is, like, the probably the best way for me to express affection right now. Mhmm. I think it’s always going to be now. I don’t know why. It’s not that I can’t communicate as I can. But it’s more like, I care about you, but, like, I’m gonna put my soul in beans when I’m making for you. And then I really hope that comes out that way. And that is, like, the best way it’s, like, a love language. And I hear people say that cooking is their love language. And I say that now. And then people, like, I don’t even get what that means. I’m like, do you even know what that means? Like, cooking is so hard for, like, there’s so much involved when it comes to cooking and, no. Like, the people I love, I get to make something for them make them happy in that way. It’s just it’s so rewarding. I wish I could share that with my mom. Like, now I get why she love cooking too.

Victoria Volk: And maybe that’s part why you’re drawn to it is that Yep. You recognize now that connection that to food. It’s a relationship. Right? And so maybe a part of this you wanting to cook and things is is is what is going to help you shift your relationship with food. Right? And so that it’s no longer this drive, like controlling force in your life that it’s you are changing the narrative around food. It is now a source of love and nourishment and vitality. Right? Yeah. Not only for yourself, but whomever you decide to share it with and break bread with, I think it’s a beautiful thing.

Zane Landin: It is. Thank you.

Victoria Volk: Is there anything else that you would like to share? And I don’t wanna say this too because one of the things I’m actually gonna ask this because it’s on my forum and you filled it out. And you I love your answer. And if you don’t remember what the answer was that you put, but I ask, what would what would you like to scream to the world in the past or recently in which people knew about your grief? What you had said then when you filled out the form was my grief doesn’t make me broken. It has made me stronger.

Zane Landin: My gosh. Wow. Sorry. So I’m trying to remember. Because like I said, before we started, I don’t remember when I sent that in, but that is true though. Yeah.

Victoria Volk: I agree

Zane Landin: I able to look at me differently. And I don’t think people do. But I do think that there’s another layer that people understanding now. Like, there’s a depth that they understand of something that I’ve gone through. Who knows? Maybe people do see me as broken. But I don’t. Again, I’m not gonna I don’t I’m not concerned with how people perceive me. How I perceive myself as I’m not broken. It’s a thing that, again, everyone experiences and I experienced it. And I know I do believe in the mindset that everything happens for a reason. I don’t know what the reason is. I don’t need to know. I just thought there’s a reason my mom passed. There’s a reason I discovered cooking. There’s a reason had such a great relationship with her, whatever it is. That’s how I feel that it was her time. There’s no reason why. Because I know some people will grapple with that. Like, why did that person pass? There’s no need to ask why? There’s no answer. If that makes you feel better, then that’s, you know okay. But I think that that just that would make me feel so much worse because there is no why, there’s no real why. There’s no why because there shouldn’t there’s no reason why they should be gone at all. They should still be here. That’s what I would say. I don’t I don’t see myself as broken. I just see this something that I’ve gone through and it’s something that makes me stronger. And that’s exactly how my mother was too. I didn’t see my mom as a broken person even though she went through so much, so much loss, so much so much like, just a lot of stuff so much. And but I never saw myself I never saw my mom has broken. I don’t know how she saw herself. But because she was such a life for everyone else, no. We didn’t see her that way. She was the kind of person that, of course, can that lit up around. And I know a lot of people do say that. I feel like, at this point, it’s a little cliche when I hear that. But there’s no other way I can describe it. Yeah. So I guess that’s what I would say. And also grief doesn’t define me. I’m not a I’m not a person who grieves. It’s not my identity. It’s just when that happens to me. It’s when I’m always gonna carry but I don’t want to see myself as a griever. I wanna see myself as a strong person that still has this powerful relationship with my mom. In grief, it’s just something I’ve had go through.

Victoria Volk: And you’re thriving? I believe you’re thriving. Do you believe so too?

Zane Landin: I think I am. No. I know I am because I’ve had many opportunities maybe just coming to DC and living here for a year and just the relationships I’ve made and the people I’ve come across and just the routines I’ve had just in the past. Couple years alone. I’ve had a lot of great opportunities before my mom passed, but I think it’s just kinda sad that I had a lot of opportunities. So many that my mom well, especially, yes. Like, she got to see them and experience them. But the one thing that I think is the hardest is I don’t get to hear her voice. I don’t get to hear her excitement anymore. And there were so many things that she was into that she I can’t really imagine how she would react to some of them. Like, when I got the opportunity to go to the White House, my mom was always wanting to go there and I know she would be on the same fight with me. Or before I actually interned NASA. My mom loved NASA. She loved anything to do with space or the universe. Just so many different opportunities in me just working at well, I didn’t even ever even mention it, but I do work for National Geographic. My mom just she sounds like we had the magazine lying around, but just working for National Geographic. I know my mom would be very excited about that. So it’s just kinda or speaking on television and just seeing me the TV screen. There’s just so many so many opportunities that I wish she kinda I got to physically see her react. But other than that, I am very blessed.

Victoria Volk: I’m just gonna take a moment to celebrate you for a moment because, you know, we talked about not owning our accomplishments and things like that. And especially with grief, we can have that loss that really just takes us down. But instead, it’s cracked you open. And look at everything that has opened up for you because you didn’t allow it to take you down. I think that’s an inspiration for people and for my listeners. So I just wanted to highlight that and make a point to say that.

Zane Landin: Yeah. Thank you. And one of the things that I think about is, you know, where where would they want you to be? I don’t know many people that would want you to be depressed about them. I mean, yes, it’s had that had that low low of sadness, but it’s like you say, Was it lay and decay? When you lay and decay

Victoria Volk: Lay and decay yeah

Zane Landin: When you lay and decay, it’s, like, I don’t think I don’t know anyone that wants you to feel that way. And so, like, I have I consciously have to think about what mom would want for me, and it’s like, would my mom want me to soak in that? When mom want me to take the opposition and go for an opportunity, no matter what the outcome could be, you never know what’s gonna happen, and sometimes it could be good, sometimes it won’t be but I think my mom always pushed me to accept any challenge that came my way.

Victoria Volk: Yeah. I think even moving forward, I think that’s the driving question. You can ask yourself, what would my mom do? What would mom do? Yeah. Because she was such a light for you, and I’m glad you had that experience. Relationship with her and that it is continuing, that relationship is continuing because I think too, it can happen. We didn’t really get into this, but a lot of what can happen when people lose somebody is that, you can get very angry at God, you can get very angry at the world, and just completely shut down. And that was me too for a long time. Like, I was very angry. I didn’t step into a church. I was I was spiritually thirsty. That was an aspect of my life that really went downhill. And so I just encourage people to be open, be open to the possibility and like you said, we’re not gonna have all the answers. We’re never gonna have all the answers. But do we have to? Right? Would it make a difference? Would it change anything? You know?

Zane Landin: Yeah. I think it’ll

Victoria Volk: The result is still the same. Right? They’re still without this person.

Zane Landin: Yeah. I think that people they want the answer. Because I think when you have that answer, It’s like you feel like your path is set, but I really don’t think that there is an answer. How could there be? Because I know some people say, oh, maybe God wanted them closer. No. I don’t think that at all. I don’t that’s incredibly selfish. I don’t think I would want that. And if that’s the case, why would you want them there? If they’re such a light, why wouldn’t you want them in the world, preaching, love, that you want the world to be as God. Right? And so I don’t believe in that. And so I never want people to question the why because there is no answer really. And like you said, if you do get an answer, it doesn’t really change anything.

Victoria Volk: So what gives you the most hope and joy for the future?

Zane Landin: It’s what gives you the most hope and joy for the future is knowing that my mom is still out there and some sort of spiritual way, whatever it is. She’s still there and I still have this relationship with her, and I get to build on it, and I get to do things that remind me of her. And that gives me hope. Like I said, it’s not a guaranteed answer, but if I knew that there was a guaranteed afterlife. I would feel an ultimate peace in a way. Wouldn’t change it. It wouldn’t change a lot because she was so gone. But just the comfort of knowing that she’s in a safe place and I will see her one day that she said that’s enough. I will never know that for sure. But what gives me hope is that that might be that might be out there. And if it’s not, well, I hope not. But if it is, I still have the beautiful memories and I can create more positive memories with other people, with my mom in my mind.

Victoria Volk: Channeling her love and her energy and her light through your good work. Right?

Zane Landin: I won’t feel to remember that way because like, my mom doesn’t hear anymore, but I want people to feel that way when they interact with me. That, there is a there is, like, a specking me that reminds them of my mom or if they haven’t met her, it’s like, well, that’s what my mom would be like. You kinda have met her maybe. I remember even telling a story, and my partner was, like, it’s almost it’s almost exact how you tell stories like her and I was like, really even like my family friends are like, yeah. It’s very interesting how you’re almost just like your mom at times. I’m like, wow. Well, I love hearing that. Thank you.

Victoria Volk: That’s wonderful. Anything else that you would like to share that you didn’t feel like you got to share that you want listeners to know?

Zane Landin: We really don’t think so. I really think we got into a lot of different topics about grief and also mental health and human suicide and the work I get to do. No. Nope. Not at all. Just thank you so much again for having me on.

Victoria Volk: And where can people find you?

Zane Landin: Oh, I mean, I’m on, like, Instagram and LinkedIn. And the digital magazine you mentioned is positive by its magazine. You can find me by just typing in my name. My social media handles or all my name, just show people who type my name, exactly where you’re gonna find me, just so I am just so I am accessible to people as much as possible.

Victoria Volk: And that’s how they access the magazine as well as through your social channels.

Zane Landin: Yeah. You can find it there too.

Victoria Volk: Okay. Well, thank you so much. I will put all those links in the show notes, and I thank you so much for joining me today. This really, truly did feel like, a conversation, like, you know, a really what’s the word?

Zane Landin: Like a dialogue.

Victoria Volk: Yeah. But more like yeah. But of really deep issues that are impacting all of us, like everybody. Right? Like, we’re not resistant to soul that isn’t touched by grief and there isn’t a soul that isn’t probably touched by mental health, whether it’s themselves or someone they know or love or care about. Right? Like, it’s an both of these things are an every one issue. And I think I think we’re getting better. And that’s what gives me hope is, as a society, I think we’re getting better. We have a lot of work to do. But I think with people like me and like you or using our voices for positive and to share what we’ve learned and what we know and helping where we can help and be of service. I mean, that’s the best we can do. Right?

Zane Landin: Yeah. This is so great. Thank you so much.

Victoria Volk: Thank you so much for being my guest today and for sharing your time with me and my listeners. And remember, when you unleash your heart, you unleash your life. Much love.

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