Chronic Illness, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Parenting, Podcast, Widowhood |
Debbie R. Weiss | Finding Strength in Struggle: Weight Loss, Widowhood, & Wisdom
SHOW NOTES SUMMARY:
In this episode of Grieving Voices, we welcome the remarkable Debbie Weiss, a life strategist who has spent over five decades helping others while overcoming her own daunting life challenges.
As an author and podcaster, she offers hope and motivation to many through her memoir “On Second Thought, Maybe I Can” and as a contributing author in “Heart Whispers.”
Key Points:
– At age 50, Debbie experienced what she describes as midlife awareness rather than a crisis.
– She reflects on becoming the primary caregiver for her father after his stroke at just 46 years old — a role that lasted thirty years.
– The pivotal moment came during a girls’ trip when she was 50, where she realized how much of herself was lost in caregiving roles.
– Her journey involved tackling weight loss by changing her mindset about food and diets to embrace it as part of a sustainable lifestyle change.
– Secrets have a way of holding us back, as Debbie encountered and later moved through.
– Being a caregiver for most of one’s life and in different roles has taught Debbie the importance of not caring for others except all else, including self-care. As a caregiving daughter, then as a wife to her terminally ill husband, Garrett, and mother of a son who struggles with mental health challenges, she now advocates for those who’ve given their lives to caregiving or otherwise and are ready to empower themselves.
Takeaways:
Debbie underscores the importance of self-care amidst responsibilities. She emphasizes that mindset is key — changing habits and reframing thoughts towards oneself and one’s goals.
Tune into this powerful conversation full of raw emotion, resilience, insights into mental health struggles within families, and navigating grief after losing loved ones.
RESOURCES:
CONNECT:
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CONNECT WITH VICTORIA:
Victoria Volk
(00:00:00 – 00:00:21)
Thank you for tuning in to Grieving Voices. If this is your 1st time listening, welcome., And if you’ve listened before, welcome back. Today, my guest is Debbie Weiss. She is a seasoned life strategist with over 5 decades of experience and has faced some of life’s most daunting challenges head-on and emerged as a beacon of hope and inspiration for others.
Victoria Volk
(00:00:22 – 00:00:47)
As the author of the highly sensitive memoir, On Second Thought, Maybe I Can. And a contributing author in the collaborative book, Heart Whispers, Debbie’s words have the power to uplift and motivate. You can also be uplifted and motivated by Debbie through her podcast, Maybe I Can, and pass along some heart joy to others through her shop of sprinkle of hearts. Thank you so much for being here.
Debbie R. Weiss
(00:00:47 – 00:00:49)
Oh, thank you so much for having me.
Victoria Volk
(00:00:50 – 00:01:18)
So I read about you a little bit I scoped the the webs and was reading a little bit about your story. And I really wanna I don’t think this has been talked about ever specifically on the podcast in almost 4 years. So I’m excited for that. But you talk a lot about, like, on your website and in your form and stuff that you filled out. Age 50 was this pinnacle year for you.
Victoria Volk
(00:01:19 – 00:01:43)
And it was almost as if, like, for me personally, I had what I call a midlife unraveling. Mine was in my earlier thirties, but which it can happen for any of anytime during your lifetime. Right? But for you, it was around 50. And would you say that that was a midlife unraveling or midlife crisis or midlife awareness or how would you describe that?
Debbie R. Weiss
(00:01:44 – 00:02:19)
I think I would describe it as midlife awareness. At that point, I had been a family caregiver to my father for over 30 years. My oldest son who was diagnosed on the autistic spectrum and at that point, I wasn’t a caregiver to my husband, but just for the 30 years with my dad and then adding my son, took it to a whole new level, and I was stressed. I still had regular responsibilities like we all have.
Debbie R. Weiss
(00:02:19 – 00:02:43)
I was working full time, and I was actually self-employed, so I had to worry about my customers and my employees and whatnot and, of course, things at home and my kids at that age were being, at least my younger one, shuffled off to whatever event but life. Right? And it just never seemed to stop. It was just this get-up. Do it again.
Debbie R. Weiss
(00:02:43 – 00:03:03)
What do I you know, what fires do I have to put out today? hat do I need to make sure to check off my list? And when I turned 50, my friends insisted that we go away for the weekend on a girl’s trip for my birthday. And I thought, oh my goodness. I’d love to do that, but how am I gonna leave my husband?
Debbie R. Weiss
(00:03:03 – 00:03:27)
What you know, with all of these in charge of these things and whatever. And I went. And on that trip, it was the first time in my adult life that I did not have to worry about anybody else but myself. And when they asked me, well, what do you wanna do, or where do you wanna go eat? I’m, like, looking over my shoulder.
Debbie R. Weiss
(00:03:27 – 00:03:59)
Like, are they asking me? And through just reconnecting with my friends and really myself, I kinda came to the realization of who am I? Who have I become? Not that I would ever change taking care of any of my family members. But I had done that at the complete exclusion of taking care of myself. And I think at 50, it was also kind of that mortality motivation thing.
Debbie R. Weiss
(00:03:59 – 00:04:15)
Like, okay, Is my life more than half over? Am I really making it to a 100? I hope so. But chances are I’m on the downhill slide, let’s say, and I don’t wanna be that person who gets to the end, looks back, and said, what happened?
Debbie R. Weiss
(00:04:15 – 00:04:39)
I just wasted. I don’t wanna say wasted, but I didn’t do what I wanted to do, and I didn’t have anything I wanted to do, by the way. But it just felt like if I didn’t do something and take control in some way at that point. The next 50 years were gonna be gone, and I was gonna be that person looking back. And so that was the moment.
Victoria Volk
(00:04:40 – 00:04:57)
Can we rewind the clock a little bit? I read on your website that it was after like, the day after you graduated high school, your dad had this massive stroke. Yep. Why did the responsibility because people might listen people listening. If I’m curious, they’re probably curious too.
Victoria Volk
(00:04:58 – 00:05:00)
Why did the responsibility fall on you?
Debbie R. Weiss
(00:05:03 – 00:05:20)
So my parents, several years before had been separated off and on. And they got back together., And it’s funny. I don’t know why, my mother is still alive. I’m very happy to say, and I don’t know why I really haven’t discussed this with her.
Debbie R. Weiss
(00:05:21 – 00:05:48)
But I don’t know how their marriage was at that point. My father was days shy of turning 46 when he had the stroke. My mother was 39 years old. And they were separated because my father had an affair. And I think, for my mom, of course, when I was that age, I didn’t understand. Then as an adult, it has a a different perspective.
Debbie R. Weiss
(00:05:49 – 00:06:17)
My mom did what she needed to do for my father. Don’t get me wrong. But it was I always had this daddy’s little girl connection. I have 1 younger brother, so I always grew up feeling like it was kinda 2 teams, my mother and my brother and my father and I, and he was my hero. He fell from the pedestal with the affair, for sure.
Debbie R. Weiss
(00:06:18 – 00:06:43)
But, still, when I saw my mother was doing what she needed to do as far as getting him the doctors and the care and all of that stuff. But she didn’t really have, like, what I felt she should be compassionate. She didn’t have as much, sympathy or and, again, this was according to what my standards were. I did actually go away to college.
Debbie R. Weiss
(00:06:43 – 00:07:04)
So my father was in the hospital the whole entire summer, very different. This was 1981, very different than how It would work now. And I left for college, which that alone is traumatic. Right? But to know that you’re leaving behind, my dad, I didn’t know what was gonna happen.
Debbie R. Weiss
(00:07:04 – 00:07:37)
I knew, again, he would be safe and taken care of, but not how I felt comfortable. And I went away to school not being invested. And that it’s another whole story. But I wound up leaving school, coming home, attending a local university for a year and a half and taking care of my father at home. So he at the time, he was had a physical therapist and a speech therapist, and I had to do the exercises with him.
Debbie R. Weiss
(00:07:37 – 00:08:12)
And I would actually help him get into a bathing suit so that I could put him onto the chair over the bathtub with the handheld shower and give him a shower. I was doing that. He was still living at home. After a year and a half, now I was 2 years into college, and I thought to myself, kind of like at 50, I lost this college experience that my friends are having. And I’m gonna regret it. And I actually did transfer away to a different yet a third school for the last 2 years.
Debbie R. Weiss
(00:08:12 – 00:08:33)
That’s where I graduated from. In my senior year, my mother had already made the decision that she wanted a divorce. And so she found him a place to live, which back then, like, assisted living, independent living, not like it is today. So she could only we lived in Long Island. She could only find a place in New Jersey.
Debbie R. Weiss
(00:08:33 – 00:09:03)
It was about an hour and a half from where we lived. And there he was at the time, still not even 50, living with 85 year olds. And so once they were divorced, then he was my real responsibility as far as, he didn’t live with me. He did live independently. He was able to do that, but I was the money person because he didn’t have a lot of money, and that changed over the years, and I used I’d had to move him to different places.
Debbie R. Weiss
(00:09:03 – 00:09:27)
And then he had other medical problems, and now I’m learning all about, doctors and specialists, and I didn’t even know what all those ologists were at 22 years old. Right? So that’s kind of how it happened. I did hold a lot of anger and resentment towards my mother. I did for a long time.
Debbie R. Weiss
(00:09:27 – 00:09:44)
But I have come to terms with it because I know that she certainly, in her own mind, didn’t think, oh, I’m gonna saddle my daughter with this. Mhmm. I think she was thinking, and I’m putting words in her mouth. She did take care of him officially, got him what he needed.
Debbie R. Weiss
(00:09:44 – 00:10:04)
If I had a question, it wasn’t like she wasn’t gonna help me. But she wasn’t the person getting the phone calls and having to visit and bring food and whatever. Over the years, I could literally write another book about my 30-year experience with my dad, some funny. So that’s that’s how it happened.
Victoria Volk
(00:10:05 – 00:10:15)
So did you find yourself into a career that like, what what did you go to school for, and did you follow the path that you intended?
Debbie R. Weiss
(00:10:15 – 00:10:49)
I never knew what my path was. I was always a numbers girl, a math girl, but not science. So I knew I didn’t want anything like that. And I originally wanted to go to, law school to become an attorney, a sports attorney to deal with, like, athletes’ contracts and stuff. Well, simultaneously, I was also with my high school boyfriend who I was engaged to by or right after I graduated from college, and I decided not to go to law school at the time.
Debbie R. Weiss
(00:10:49 – 00:10:56)
And I had graduated with a degree in accounting, so I became a CPA. Okay. It was fine.
Victoria Volk
(00:10:57 – 00:11:00)
Did you end up marrying the man that you were engaged to?
Debbie R. Weiss
(00:11:00 – 00:11:35)
Nope. Because he, even though he’ll still deny it, wound up meeting someone else while we were together and left me for her. But in the end, just like so many things like that that are heartbreaking at the time, it was actually, I knew deep in my heart that he was not the right person for me. I just didn’t have a lot of self-confidence or self-esteem, and I felt like I better take whoever’s interested because I’ll probably never meet anyone else. So he did me a favor.
Victoria Volk
(00:11:37 – 00:11:54)
And I think, that can only come in hindsight. Right? And then as we you know, we don’t in the moment, it’s like you think it’s just devastating, and you think your world’s falling apart. And then after you have some time pass and, fall onto a different path. Right?
Victoria Volk
(00:11:54 – 00:12:01)
Because of that, that changes the trajectory of your life. You look back and it’s like, oh, Phew. I dodged a bullet there.
Debbie R. Weiss
(00:12:01 – 00:12:03)
Exactly. Completely.
Victoria Volk
(00:12:04 – 00:12:22)
For 30 years, you cared for your dad. So when so you had a lot of time to have conversations and work through a lot of things maybe that with your mom and all of this the dynamics of the family and things. But when did he recently pass?
Debbie R. Weiss
(00:12:23 – 00:12:36)
No. He passed away in 2011. Literally, like, 30 years. It was he had the stroke in 1981, and he died in 2011, a month before, like, the anniversary of the stroke.
Victoria Volk
(00:12:36 – 00:12:38)
Oh, wow. It’s so young. So young.
Debbie R. Weiss
(00:12:38 – 00:12:52)
So young. Yeah. It was crazy. I mean, we were, of course, I can think of the day it happened. And stroke wasn’t even a term that you would equate to a 45 or 46 year old.
Debbie R. Weiss
(00:12:52 – 00:13:01)
It just was so out of the blue and so left field and bizarre, but things happen.
Victoria Volk
(00:13:02 – 00:13:25)
Coincidentally, just in the last month or so. So my son had a heart murmur found when he was in high in he was 12. Sports physical. And it’s due to when you take your 1st breath when you’re born, the flap between the left and right ventricle doesn’t seal and so it can leak a little blood and you can develop blood clots and stroke is a risk of that. Yeah.
Victoria Volk
(00:13:25 – 00:13:39)
But just in the last month, 2 people I’ve heard well, 1 person I know had a stroke because of that. And another I just found out today another person, they were 33 years old when they had a stroke due to the same thing.
Debbie R. Weiss
(00:13:40 – 00:13:40)
Wow.
Victoria Volk
(00:13:41 – 00:13:59)
And so when children are found to have a heart murmur when they’re young, it’s really important to investigate why why that is? And I’m glad that my son’s doctor had the due diligence to do that, but I’m thinking he’s 18 now, but I’m thinking, man, he should probably start taking a baby aspirin. You know?
Debbie R. Weiss
(00:13:59 – 00:14:01)
Yeah. Yeah. Oh, that’s interesting. So my father
Victoria Volk
(00:14:01 – 00:14:02)
that changes your life.
Debbie R. Weiss
(00:14:02 – 00:14:07)
My goodness. Oh, yes. My father’s stroke was not from that.
Victoria Volk
(00:14:07 – 00:14:09)
Okay. Because he was so young, that’s why.
Debbie R. Weiss
(00:14:09 – 00:14:18)
His carotid arteries were blocked. Come 1 completely blocked. So in your neck here, so the oxygen got cut off to his brain.
Victoria Volk
(00:14:19 – 00:14:30)
So how did that weekend what did your life look like after that girls weekend, which I just wanna say how important it is for people listening, how important girls weekends are.
Debbie R. Weiss
(00:14:30 – 00:14:31)
Oh my goodness.
Victoria Volk
(00:14:31 – 00:14:34)
I take a yearly camping trip with girls, my girlfriends.
Debbie R. Weiss
(00:14:34 – 00:14:35)
Good for you.
Victoria Volk
(00:14:35 – 00:14:37)
And we have for years, and it’s so important.
Debbie R. Weiss
(00:14:38 – 00:15:01)
It’s the best. It’s the best. It’s just so different than anything else and just gives you the time and perspective away to laugh and just relax and enjoy yourself, so I couldn’t agree with you more. It’s always nice to have it on the calendar to whenever we come back from something we just came back from my 60th birthday trip. And so whenever we come back, it’s like, okay.
Debbie R. Weiss
(00:15:01 – 00:15:08)
Now what? We’re planning what the next thing is to at least always have that, Mhmm. To look forward to.
Victoria Volk
(00:15:08 – 00:15:10)
Because if it’s not on the calendar, it won’t happen.
Debbie R. Weiss
(00:15:10 – 00:15:12)
Happen. Exactly. Exactly.
Victoria Volk
(00:15:13 – 00:15:15)
Because everyone has responsibilities. Right?
Debbie R. Weiss
(00:15:16 – 00:15:30)
Absolutely. Yep. You’ve gotta commit to it because it’s easy to say to back out and say, I have too much to do. I can’t go. But unless it’s earth-shattering, life-altering, go.
Debbie R. Weiss
(00:15:31 – 00:15:33)
You’ll be happy you did, for sure.
Victoria Volk
(00:15:34 – 00:15:36)
So what did that look like when you came back?
Debbie R. Weiss
(00:15:36 – 00:15:57)
When I came back, I don’t think then I don’t think that I consciously said, okay. Now I’m gonna start changing my life. But yet, I did decide, to I guess I should say, you can’t come back and be like, okay. Now I wanna change everything. Right?
Debbie R. Weiss
(00:15:57 – 00:16:21)
That’s way too overwhelming. For me, weight I’ve had a weight problem my whole entire life. Just like many people with weight problem, the normal stuff, go on this, especially as a young child. Diets were different then. This extremely restrictive diet, lose a certain amount, after 3 months of basically being able to only eat lettuce, then it’s like, oh my gosh.
Debbie R. Weiss
(00:16:21 – 00:16:56)
Give me something else, then you taste it. The next thing, the £25 or whatever is back and more and so on and so forth. And at that point, I was I don’t think I was the heaviest I ever was, but I was a 100 pounds overweight. And of all the diets I have done them all, weight watchers was one that was, like, worked for me. And I said, I’m gonna go back to weight watchers, but I’m gonna be different this time.
Debbie R. Weiss
(00:16:56 – 00:17:21)
Because when I went in the past, it’d be like, okay. I need to lose x amount of weight by a certain date or else I’m a failure. And if I don’t eat something on plan, oh, forget it. I might as well just ditch the whole idea. So instead, I said, what I’m gonna do, I’m going to commit to going to the weight watchers meeting one time a week.
Debbie R. Weiss
(00:17:21 – 00:17:32)
That’s it. Nothing to do with how much weight I lose, what I’m eating, if I’m recording my food. None of that. I’m not gonna worry about it. I’m just gonna get going to the meeting down.
Debbie R. Weiss
(00:17:33 – 00:18:02)
And I did that, and I didn’t lose any weight. I didn’t gain any, but I didn’t lose any. And then once I was comfortable with that and actually enjoying the meeting and meeting people and looking forward to going, then I added another layer. So I’m just gonna pay attention or track my food 50% of the time, and got comfortable with that and decided for the first time in my life, there is no endgame here. There is no on-and-off.
Debbie R. Weiss
(00:18:02 – 00:18:16)
This was just when the term lifestyle was being thrown around, but that’s what it was. That’s what I told myself. You’re never gonna be on a diet again. This is a lifestyle. You’re gonna eat ice cream.
Debbie R. Weiss
(00:18:16 – 00:18:31)
You should eat ice cream. Nothing is forbidden. But just because you ate ice cream doesn’t mean you’re gonna eat ice cream 7 days a week, and you’re gonna add other things. It just doesn’t work like this. It’s a balance, and you’re never gonna be off it.
Debbie R. Weiss
(00:18:33 – 00:18:52)
And for so long, I looked at other people who didn’t have a weight problem, and I just assumed it was easy for them. I’d see them on a Saturday night eating and drinking whatever they wanted. Maybe I don’t think I made the connection. Hey. They don’t eat and drink like that 21 meals a week.
Debbie R. Weiss
(00:18:52 – 00:19:13)
I was so busy feeling sorry for myself, that I didn’t take the time to really be honest with myself. And I think it probably took 2 to 3 years to lose 90 of the £100. I was, as we say, a turtle.
Debbie R. Weiss
(00:19:13 – 00:19:53)
Slow and steady wins the race. And just the fact that I had stuck with something for that long, now it had become my new normal. And I actually have not yet hit that 100 pound mark. And since that time that I hit that number, which was probably 2016 or 17, so for me, 3 6 to 6 years, let’s say, of basically maintaining, I’ve gone up £10, but then I’ve been able to lose it too, is a huge victory. So what changed?
Debbie R. Weiss
(00:19:54 – 00:20:08)
Weight Watchers didn’t change. Yeah. Every year, they make some little tweaks to their program, but it wasn’t that. It was my mindset. It was all in my approach and how I was thinking about the whole thing.
Debbie R. Weiss
(00:20:08 – 00:20:32)
And that was really the start of my understanding howmy mind, my thoughts has the power to shape my life. I was giving the power to everybody and everything else and taking no responsibility, but yet it was the things I was thinking. I was feeling sorry for myself. Why me? Poor me.
Debbie R. Weiss
(00:20:32 – 00:20:41)
Oh, I might as well just eat a cookie. You know? Whereas, when I change those thoughts, I changed my behavior. Well, and when you’re start.
Victoria Volk
(00:20:42 – 00:20:44)
Congratulations, first of all.
Debbie R. Weiss
(00:20:44 – 00:20:45)
Thank you.
Victoria Volk
(00:20:45 – 00:21:09)
On maintaining and changing your relationship with food because, essentially, that’s really what you did. Absolutely. I think too, like, with all this, like, if you’re constantly at that fight or flight stress level in your life where you’re just that hamster on the wheel, it’s far easier to just abandon what you know is healthy for you and just choose what’s easiest.
Debbie R. Weiss
(00:21:10 – 00:21:27)
Especially as an emotional stress eater. I would look forward to the end of the day when I could finally sit down, not have anybody ask me for anything. Watch an hour or 2 of TV and eat some snacks. And my husband also had a weight problem.
Debbie R. Weiss
(00:21:28 – 00:21:50)
He didn’t care about it like I did. He couldn’t care less. So, you know, a lot of the times, I had, like, a partner in crime, which, in hindsight, I actually prefer that over the partner who looks at you and watches everything that you’re putting in your mouth. At first, I thought, oh my gosh. It’s even harder having him.
Debbie R. Weiss
(00:21:50 – 00:22:18)
And then when I listened to my friends and what I hear and people watching you, like, I never had to worry about that. And I, for the most part, felt, yes, I would be upset, about how I looked as I would get heavier. But I never felt that his love was tied to my weight, which was how it should be, but it’s not always the case.
Victoria Volk
(00:22:20 – 00:22:27)
As you were changing and coming into these different new awarenesses, did some of that rub off on your husband?
Debbie R. Weiss
(00:22:28 – 00:22:42)
I think so. I don’t think, certainly, he didn’t incorporate my food choices and changes into his life, but he was the, actually, I don’t cook. He did. He loved it. He loved grocery shopping.
Debbie R. Weiss
(00:22:42 – 00:23:01)
That was all him. And he without him, I really couldn’t have done it because I would bring him recipes, and he would make things for me and portion them out. And he was my partner in it. And when he stopped cooking, it was very hard for me.
Victoria Volk
(00:23:02 – 00:23:08)
Did he stop cooking? Did he get sick? Because I know your husband that’s what brought you to the podcast today.
Debbie R. Weiss
(00:23:08 – 00:23:27)
Yeah. So my husband, funny. I would look back and say, boy, you went through male menopause after you turned 50. Everything seemed to like I noticed when he turned 50, he always had a lot of he was diabetic. He had Crohn’s disease.
Debbie R. Weiss
(00:23:29 – 00:24:13)
He had some social anxiety, which I didn’t really understand. And then as my kids were both diagnosed with ADHD, it was clear he had ADHD, but it just seemed like he started getting crankier, which he wasn’t cranky before, it was looking back, it was now I understand more that there was a mental illness component coming into play, but I didn’t understand that then. And so as time went on, it just got worse and worse and worse. And the things that he enjoyed, he was no longer enjoying.
Debbie R. Weiss
(00:24:13 – 00:24:38)
He, it seemed like it now he had to see a cardiologist. Now he had to see whatever it was, it just things started popping up, but yet because of his mental illness, he didn’t take care of them as he should. So I would be making doctor’s appointments for him because I was basically ran in his life. I would be making doctor’s appointments for him, and he wouldn’t go.
Debbie R. Weiss
(00:24:39 – 00:24:55)
And then I’d have to either call or cancel or and reschedule, and it it was like a cycle. And then I had all of these different appointments. Now, simultaneously, he and I worked together. I have an insurance agency. He worked there with me from the beginning.
Debbie R. Weiss
(00:24:55 – 00:25:17)
He was an integral part, I mean, more so than me. He was basically customers loved him. I was more the behind the scenes girl, doing the numbers and keeping the business running. But he was the face that people came to see. And slowly, he would be we would drive separately, and he would drive to work.
Debbie R. Weiss
(00:25:17 – 00:25:37)
And he would text me or call me and say, I’m pulled over on the side of the road. I had to pull over because I was gonna get sick. And I thought this didn’t happen just once. This happened more than once. And then he would pull up in front of the office and call and say, I can’t come in.
Debbie R. Weiss
(00:25:37 – 00:25:51)
I have to go home. Be like, what? And this went on for years, and I thought that it all had to do with his Crohn’s. But looking back, it wasn’t. It was anxiety.
Debbie R. Weiss
(00:25:53 – 00:26:34)
And it just kept getting worse and worse and worse. And I would say that, the last 10 to 12 years of his life, I didn’t really have a husband in the sense that we all think we did not have a physical relationship. We did not, I was just taking care of him, and he and he started doing less and less. Eventually, one day, he just walked out of the office and said, I can never come back. And he left me with I mean, he came back to my house, but he couldn’t go back to the office.
Debbie R. Weiss
(00:26:35 – 00:27:10)
And I said, Garrett, can’t can’t I just bring home the stuff then we just go through it and you tell me who do I need to call, what do I need to do? Like, Customer service is a huge thing for me, so just that gave me anxiety thinking that I was going to let the ball drop on so many things because of his procrastination and his illness, he had stacks of papers miles high in his desk. You couldn’t even see, and he never would do it. He could not do it. And so, long term employee of of mine, she and I went through, and we just called people and said, look.
Debbie R. Weiss
(00:27:10 – 00:27:31)
He had to leave suddenly, and we wanna make sure. What’s outstanding, and everybody was understanding. But for me, that was super difficult because each step of the way, I think, okay. Now he’s home. He doesn’t have the stress of working, so now he should be able to get back to going to the grocery store and cooking, and his mood should improve.
Debbie R. Weiss
(00:27:31 – 00:28:10)
And it didn’t happen. It was just a I think, a very steep decline from that part on, now he wasn’t well, let me just also say simultaneously, our oldest son, at that point, was suffering from depression and anxiety that was pretty intense, and he wound up being hospitalized. And it was traumatic and horrible. And I think that that trauma sealed the deal. And he then, again, I didn’t realize at the time I couldn’t get him out of bed for days.
Debbie R. Weiss
(00:28:10 – 00:28:17)
That was the depression. I would be at work. He would have appointment. I’d be calling, calling, calling the house.
Debbie R. Weiss
(00:28:17 – 00:28:27)
The phone had been ringing. He’d be sleeping. I then I’d be worried. I’d jump in my car and drive home. It was It was so incredibly stressful.
Debbie R. Weiss
(00:28:28 – 00:29:02)
It eventually culminated in May of 2022 with me, somehow and this is a whole mental illness discussion. And it’s very difficult to get somebody hospitalized if they’re not willing, but I was able to get him hospitalized. And in a week, he made an amazing transformation. And he came home from that Hospitalization. He was so happy and upbeat.
Debbie R. Weiss
(00:29:02 – 00:29:19)
He had to go to online therapy 5 days a week for 3 at a time, he was, like, the star in the group. It was like, who is this man? And we had all of us, it was like a cloud lifted. And for the 1st time, I did really feel hopeful. Like, okay.
Debbie R. Weiss
(00:29:19 – 00:29:35)
He’s gonna come through this. And less than 6 weeks later, he was diagnosed with terminal blood cancer. Just talking about it gets me upset. Sorry, It’s just so crazy how life just throws these twists and turns you’re away.
Debbie R. Weiss
(00:29:35 – 00:29:51)
And that was June of 2022, and he died December 30th last year. Sorry. Thanks. And those 6 months were hell.
Debbie R. Weiss
(00:29:52 – 00:30:22)
And, honestly, the physical part, yes, but the mental, it got really bad. So, it’s if somebody because I never had any experience with mental illness. And it’s just like anything else until you do, you just can’t understand it. It is just there’s no look. There’s no logic to disease either, right, with cancer and whatnot, but we all know people.
Debbie R. Weiss
(00:30:23 – 00:30:34)
And there’s protocols. Right? And we know what the odds are, and sometimes they work, and sometimes they don’t. And, you kind of know what the ultimate sometimes you do.
Debbie R. Weiss
(00:30:34 – 00:30:57)
Sometimes you don’t. But with mental illness, It’s like throwing darts at a dartboard. And then when you compound all of these other factors, these physical illnesses. With that, it’s too complex. And, he was, hospitalized for the whole month of November last year in 2 different facilities.
Debbie R. Weiss
(00:30:58 – 00:31:34)
And because of the medications and whatever, he actually had a psychotic break and lost touch with reality. And it was awful. It was medication driven, I think, from what the 1st hospital did and how they took him off some meds too suddenly. And once they got him stable, he came back home, but now he hated me, because I had put him through this. And that was literally the beginning of December.
Debbie R. Weiss
(00:31:36 – 00:31:49)
And then he was not on hospice. He was not it was not one of those things where we knew he was it was imminent. Nope. It came out of the blue. Out of the blue.
Debbie R. Weiss
(00:31:49 – 00:32:07)
And He, in the end, basically made the decision. I don’t know if it was rational, but he was he on Christmas night, he was, I heard him, like, do a little cough. My son had a cold., I’m like, what is that? And he said, oh, no.
Debbie R. Weiss
(00:32:07 – 00:32:23)
It’s nothing. And he really wasn’t coughing, but he then he was tired and he’s very sick. So, you don’t really think too much of it. And then by 2 days later, I was like, I wanna do your blood pressure. I wanna take your temperature.
Debbie R. Weiss
(00:32:23 – 00:32:25)
Now. Now. Now. Now. Leave me alone.
Debbie R. Weiss
(00:32:25 – 00:32:39)
Leave me alone. And I got to do the temperature at least because I could just swipe, and he had a temperature. It wasn’t terrible, but with his situation, that was where I was supposed to call the doctor screaming at me. No. No.
Debbie R. Weiss
(00:32:39 – 00:32:53)
No. The next day, the temperature is a 102. I said, that’s it, and he would not. The next morning at 6 o’clock in the morning, he basically he couldn’t move. I had now I was sleeping.
Debbie R. Weiss
(00:32:54 – 00:33:12)
So I had, I have a bedroom upstairs. He had he couldn’t go upstairs anymore, so I actually, the room that I’m sitting in now, it’s a little office in my downstairs. I turned this into a bedroom. So he was downstairs. I was sleeping upstairs, but he had a upstairs, but he had a funny feeling.
Debbie R. Weiss
(00:33:12 – 00:33:27)
He just didn’t wanna be alone. So I had been sleeping on an air mattress in my family room and so I could hear him to help him. And, basically, he wound up falling. I couldn’t get him up. I tried to get my sons to help.
Debbie R. Weiss
(00:33:27 – 00:33:40)
We couldn’t move them, and I at this point, he’s got this fever. I said, I don’t care what you say. I’m calling. They came. They said you have to go to the hospital, and told them all the reasons.
Debbie R. Weiss
(00:33:40 – 00:34:00)
And he just dug in and said, I am not going, so stop talking to me. And one of the EMTs said to me, we’ll be back today, and he might not be conscious. And I didn’t have a choice. What do you do?
Debbie R. Weiss
(00:34:01 – 00:34:20)
And was he did he know? Was he giving up? Did he was just so sick of hospitals at that point, especially after that traumatic experience. And about noon, his temperature was a 103, and I said, okay.
Debbie R. Weiss
(00:34:21 – 00:34:32)
I’m done. And he was having trouble breathing, and he got scared. And he said, okay. And I called. And now, we’ve had a lot of trips to the hospital.
Debbie R. Weiss
(00:34:32 – 00:34:48)
And since he did have some OCD tendencies, so I knew all the things that I had to get for him to make him feel good. And I’m gathering that stuff, and he wants him to get dressed. And I’m, like, yelling not yelling at him, but get dressed. You don’t need to get dressed. You’re going to the hospital.
Debbie R. Weiss
(00:34:48 – 00:35:09)
Okay. I helped him get his pants on, and he’s, his breathing is labored, and he says to me, what’s taking them so long? And I looked and I said, are you kidding me right now? Because it’s how we talk to each other. Like, after this morning, now you’re annoyed that they’re taking so long.
Debbie R. Weiss
(00:35:09 – 00:35:20)
And he said, are you really saying that to me right now? I said, okay. I guess you’re right. And it was interesting because he said to me, are you coming? And I thought, am I coming?
Debbie R. Weiss
(00:35:20 – 00:35:36)
When am I never not come? Of course. I’m gonna be right behind you. Turned out in the hospital, he went into in the on the ambulance, he went into respiratory failure. And they asked him if he wanted to be intubated, which he had said, before that he didn’t.
Debbie R. Weiss
(00:35:36 – 00:35:55)
But in the moment, he did. But he died less than 24 hours later. So that was our last conversation, which I don’t have regrets about. I honestly feel it was appropriate. But I often wonder, what was going through his head at the time?
Debbie R. Weiss
(00:35:55 – 00:36:06)
Did he hope that that would that this was gonna be over finally, or was he just his usual stubborn self and just did not wanna go to that hospital because he hated it.
Victoria Volk
(00:36:09 – 00:36:29)
And it’s so unfortunate because I’m an end of trained end-of-life doula too in, people with terminal illness and terminal cancer. There is such a there is a way to have a death on your terms, how you want it to be. But people are so afraid to go into hospice.
Debbie R. Weiss
(00:36:31 – 00:36:31)
You can be
Victoria Volk
(00:36:31 – 00:36:33)
on hospice for years. You have to be a
Debbie R. Weiss
(00:36:33 – 00:36:34)
candidate for it. But, Yep.
Victoria Volk
(00:36:34 – 00:37:14)
I mean, it’s 6 months, and most people don’t make it because they die in the hospital. But it is possible to if the family is just open to and that’s hard for the family to get to that point to be able to let go and to say to accept that that’s at the phase that that person that is at in their life, but It can be a very beautiful experience and a beautiful and I’m sure people are rolling their eyes as I say that, but I’ve had people on this podcast you have shared with me. I’m my own dad passed away in a nursing home.
Debbie R. Weiss
(00:37:14 – 00:37:15)
Mine too.
Victoria Volk
(00:37:16 – 00:37:19)
You know? It’s like, he’s 44 years old.
Debbie R. Weiss
(00:37:19 – 00:37:20)
My goodness.
Victoria Volk
(00:37:21 – 00:37:30)
You know? Like, he could have died at home had there been this and this is in late eighties. You know? Had there’s this there’s support., There’s resources in most areas.
Victoria Volk
(00:37:30 – 00:37:55)
I recognize that rural America is like thumbs down in that department because there’s just a lack of resources and sources and support when it comes to end of life. But it’s so possible to have a death with dignity. And there’s actually a nonprofit called Die death with dignity. They’re trying to get legislation passed in across America. And, anyway, I’ll link to that in the show notes.
Victoria Volk
(00:37:55 – 00:38:00)
But, thank you for sharing that story. Yeah. I hope
Debbie R. Weiss
(00:38:00 – 00:38:04)
It wasn’t too much. You know, as I got talking, I realized, oh my goodness. Boy.
Victoria Volk
(00:38:05 – 00:38:14)
It’s a lot. It’s just a lot for 1 person to have on their shoulders. Did you have support during that time?
Debbie R. Weiss
(00:38:15 – 00:38:27)
Yeah. I mean, obviously. No, I shouldn’t say obviously. I luckily, I do have a very wonderful group of locse friends that were there.
Debbie R. Weiss
(00:38:28 – 00:38:46)
But, honestly, nobody could help me. I mean, they listened to me. And, you know, it was that guilt between I want them to stop suffering. Right? But you hate to say I want him to die because I don’t.
Debbie R. Weiss
(00:38:47 – 00:39:13)
But to watch what happened to him and, again, there was a whole bunch of physical things. He was in a lot of pain. To watch that, I don’t want that. Like, if I’m if he’s never gonna be the other person, then why on the one hand, and he was so stubborn that, it was very hard because I, like, I thought I’ve got to bring someone in here to help me.
Debbie R. Weiss
(00:39:13 – 00:39:29)
I was cleaning up all out. It was just a mess. And it was it was it was it was too much. And talking about my oldest son I have 2 sons. My oldest son, and my husband, very similar talk about love hate. So difficult. So I was always trying to play the referee between
Debbie R. Weiss
(00:39:30 – 00:40:05)
They were always the 2 of them, and that’s before he got diagnosed with the cancer. So for several years, when my son’s mental illness, really got pretty bad he had my son’s mental illness, came out in anger in a lot of ways. So it was, not physically towards people, but it was a very volatile environment.
Debbie R. Weiss
(00:40:05 – 00:40:28)
My poor younger son, that’s a another whole story. But so how could my friends you know, I felt like I was really living in a nightmare, but I was just trying to make sure everybody was okay. Keep them apart. Well and they were arguing. I would just try and figure out how to go to your corners and make everybody happy and do what I needed to do for everyone.
Debbie R. Weiss
(00:40:29 – 00:40:54)
And here’s the thing is that I am so fortunate that I have a team at my insurance agency who is always there for me. And in those 6 months, I didn’t have to worry about my business. Yes. I had to pay my bills, and I had to pay them, and I had to answer some emails and all of that.
Debbie R. Weiss
(00:40:55 – 00:41:22)
But I did not have to be in the office. I did not have to be online. Yes. Again, there were things I had to take care of, but for the most part, that was removed from my life, and I could never have survived if that hadn’t happened. Something woulda had to give because I was able to then take all of my energy and time and devoted to what was going on at home.
Victoria Volk
(00:41:24 – 00:41:43)
And imagine all the people that don’t have that. And so thank you for acknowledging that it is up to us to create that for ourselves, to rally the people around you that fill the roles that are supportive.
Debbie R. Weiss
(00:41:45 – 00:42:00)
Yeah. I am still to this day because they’re still doing it for me. I am just so incredibly grateful for these women, and I try and tell them as often as often as I can that it doesn’t sound insincere.
Victoria Volk
(00:42:01 – 00:42:26)
And just and you’re sharing your story, it just I can just feel the heaviness of what the environment was probably like living in between your son and your husband and how much of what your son was going through, how much of it do you think was grief of just witnessing what he was witnessing? I mean, did he look at his father like he that was his hero as you did your father?
Debbie R. Weiss
(00:42:28 – 00:42:53)
I think so. I think so until they started having this kind of relationship. My son has problems processing his emotions, or I should say, he processes them to the extreme. So every little thing that happened, he took to the extreme. My husband could’ve said or did something, and my son can’t let anything roll off to his shoulders.
Debbie R. Weiss
(00:42:55 – 00:43:32)
Since my husband is gone and my younger son is away at college, There’s a calmness, I often think how different the feel in the house is I think that on the one hand, but on the other hand, my son needs some help that I’ve kinda given this year to letting him grieve because look. As we know, grief is hard for everyone, and we all do it and process it. Different timelines, different terms. It comes. It goes.
Debbie R. Weiss
(00:43:32 – 00:43:51)
You don’t know when it’s gonna show up. Even when you think everything is fine, the next thing you know, you’re crying. And for somebody like my son, it is even more difficult. But, he’s a work in progress and he’s still a concern for me?
Victoria Volk
(00:43:53 – 00:43:55)
You know what? We all are. Yes.
Debbie R. Weiss
(00:43:55 – 00:43:55)
We all are
Victoria Volk
(00:43:55 – 00:43:56)
a work in progress.
Debbie R. Weiss
(00:43:57 – 00:43:58)
Yes. You’re right.
Victoria Volk
(00:43:59 – 00:44:08)
Did they ever make a connection between the blood cancer and because, like, with the blood brain barrier, nothing.
Debbie R. Weiss
(00:44:09 – 00:44:16)
Really? I kept saying, isn’t this is this related to this? Is this what nope. No. And it could be.
Debbie R. Weiss
(00:44:16 – 00:44:39)
Maybe it’s just something. Why were they gonna take the time to figure out, all the pieces of the puzzle? Because at that point, it was what it was with the, blood cancer. There was nothing that could be done other than he was initially had started chemo. That was only supposed to try and extend his life for a little bit.
Debbie R. Weiss
(00:44:39 – 00:44:40)
It was never going to be a cure.
Victoria Volk
(00:44:43 – 00:45:06)
You said something, I think it was on your website that you had this belief that it is what it is. Mhmm. And Yeah. In grief recovery and what I’ve learned about grief is when people say that it’s generally a way to bypass our emotions. Do you still hold that belief?
Debbie R. Weiss
(00:45:07 – 00:45:18)
No. I don’t hold that belief. When I said that, it really wasn’t about grief. It was about my life. It was this is my life.
Debbie R. Weiss
(00:45:18 – 00:45:20)
It is what it is. Like,
Victoria Volk
(00:45:20 – 00:45:21)
When things happen about
Debbie R. Weiss
(00:45:21 – 00:45:21)
It. Yes.
Victoria Volk
(00:45:21 – 00:45:23)
Yes. When things happen. Yes.
Debbie R. Weiss
(00:45:23 – 00:45:23)
Like, it
Victoria Volk
(00:45:23 – 00:45:24)
is what it is.
Debbie R. Weiss
(00:45:24 – 00:45:40)
But Yes. But No control. But, no, I, a 1000% don’t believe it. That’s what I believed for too long, and It’s only been since that belief changed that my life doesn’t even resemble what it used to.
Debbie R. Weiss
(00:45:40 – 00:45:48)
And that’s because I took control, and I continue to take control. And it’s an amazing feeling.
Victoria Volk
(00:45:48 – 00:45:59)
You mentioned the weight and shifting your focus and your mindset around that. In what other ways? What has opened up for you in the last 6 years.
Debbie R. Weiss
(00:46:01 – 00:46:47)
Probably the next area that I focused on was money. It was a money troubles were a dirty, deep, dark secret for me, especially because I have I am a CPA no longer practicing, but I practice for 10 years, run a business. And for years, for a variety of reasons, and there was a ton of excuses that I will tell you that I was telling myself, which were, when my son was first diagnosed, none of his therapy was covered. I would stop at nothing. I didn’t care if I had to live in a shed, I was going to do whatever I could to help my son.
Debbie R. Weiss
(00:46:47 – 00:47:14)
And so that kind of started, the downhill slide where, okay. I’ll take a 2nd mortgage. I’ll do this. I’ll do that. And then, it then morphed from there already being in trouble to, something that happened in the insurance industry in my state that caused me to lose 20% of my income or so right after we had bought our house, and it just kind of, like, continued.
Debbie R. Weiss
(00:47:15 – 00:47:48)
And what wound up happening was I knew that we needed to make a change. Anytime that I would like just gently say to my husband, like, maybe you should pay attention to how much you’re spending at the grocery store. He would get depressed and anxious and take it to the extreme, and I couldn’t stand that. So I didn’t say anything. So I would keep it inside, and then things would get worse, and I would see what was happening.
Debbie R. Weiss
(00:47:48 – 00:48:15)
And then since I’m self-employed, I have to pay my own income taxes, and I couldn’t make the payments. And then I’d say, okay. I’ll catch up next time. And then next thing it was a whole year, and it was a spiral, and I was too embarrassed to tell any person in my life, even my closest friends and family. I was mortified, and I realized actually, I’ll tell you what.
Debbie R. Weiss
(00:48:15 – 00:48:32)
This was another moment. In February of 2020, right before lockdown, my cousin and I went to see Oprah live in Brooklyn. She was I don’t remember what she called it. It was like a transformational tour. It tour was kind of in connection with Weight Watchers, and she went to, like, 10 cities.
Debbie R. Weiss
(00:48:32 – 00:48:46)
Each city, it was a whole day thing. And each city, she had a special guest star. And we went to this, and it was wonderful. And at the end of the day you know, I’m in a big arena, 16,000 people. The end of the day, they turned down the lights.
Debbie R. Weiss
(00:48:46 – 00:49:23)
It’s just Oprah and the microphone, and she tells some story from her childhood, that was very vulnerable. And she said something like, What secret are you hiding? What is it that you are not addressing that you’re trying to ignore because you know you have it. And I’m gonna tell you, if you don’t take control. It’s going to erupt like a volcano, and you will have no control over what happens.
Debbie R. Weiss
(00:49:24 – 00:49:39)
If you own up and take control now. You might not like what you need to do, but I can guarantee it’s gonna be better than that eruption. And I started crying because I knew exactly what it was. It was the money.
Victoria Volk
(00:49:40 – 00:50:04)
Before we hear more about the secret Debbie knew she was keeping, I have a little shot of magic to share with you, something that has become an essential part of my creative flow, Magic Mind. Now I know life can get hectic, especially now during the holidays, and sometimes we need that extra boost to stay focused, energized, and alert. And, hello, family dynamics. Right? That’s where Magic Mind comes in.
Victoria Volk
(00:50:04 – 00:50:40)
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Victoria Volk
(00:50:41 – 00:50:56)
But don’t just take my word for it. Listeners of Grieving Voices can now get an exclusive offer. Head to magicmind.com/grieving voices and enter the code grieving voices at checkout for 20% off your order. Yes. You heard that right.
Victoria Volk
(00:50:56 – 00:51:10)
20% off just for being a part of my podcast community. In January, they will also be launching in all sprouts markets. Why settle for the ordinary when you can experience the extraordinary with Magic Mind? Elevate your mind. Elevate your life.
Victoria Volk
(00:51:10 – 00:51:23)
Visit magicmind.com/grieving voices and use the code grieving voices for an exclusive discount. Trust me. Your mind will thank you. Now let’s get back to learning Debbie’s Secret, shall we?
Debbie R. Weiss
(00:51:25 – 00:51:46)
I went home, and I thought, okay. If I’m you know? Then I really was trying to I wanted to sell my house. But I kinda ran into the same thing. You know, my husband, my son, I even tried to, like, plant a seed, give them a little time to, but that was tough.
Debbie R. Weiss
(00:51:46 – 00:52:00)
So I thought, okay. Until I can get a that across I mean, I even had I had realtor come. We have a lot of fit like, things wrong with the house than it was, oh my goodness. This needs to be fit. Like, we can’t even put it on the market and I’ve gotta spend $20,000.
Debbie R. Weiss
(00:52:00 – 00:52:13)
I don’t have $20,000. So I said, okay., Let me think. What else can I do? And I started by actually, this is when maybe it had been popular for a couple years selling things on Facebook.
Debbie R. Weiss
(00:52:15 – 00:52:26)
And I thought, well, what good is that gonna do? But it’s kind of the same thing with the Weight Watchers thing. Right? like, what good is just going to the meeting? Well, what good is it if I just sell this thing?
Debbie R. Weiss
(00:52:26 – 00:52:43)
How much am I gonna get? But it turned into fun. And I was running around my house looking for things that I could sell. And even if I sold something for $2. It was, like, so exciting because it was like, you see?
Debbie R. Weiss
(00:52:43 – 00:52:54)
Look. I found some things that were locked away in my basement, I didn’t even know. I then actually started going on, and I can’t remember what website it was on. Mercari maybe. Selling and shipping.
Debbie R. Weiss
(00:52:55 – 00:53:14)
And I turned it into, like, this whole fun game. And that kinda made me think, well, I did this. Let me research what other people do. What are other ways to make money? And and that was kind of like my next moment.
Debbie R. Weiss
(00:53:14 – 00:53:30)
Also, then, at the same time, addressing where I was with my tax situation, wI was with my debt, I went to a I explored my options. Right? I went to a bankruptcy attorney. I went to a tax attorney. I you know?
Debbie R. Weiss
(00:53:30 – 00:53:37)
And kinda came up with a plan, and I was taking control.
Victoria Volk
(00:53:39 – 00:53:42)
And was this at the same time as your husband’s decline?
Debbie R. Weiss
(00:53:43 – 00:53:59)
Yeah. pretty much because my son was hospitalized in June of 2020, so that was February of 2020. So, yes, it was all kind of happening simultaneously, which also, really was a problem for me selling the house.
Victoria Volk
(00:54:01 – 00:54:13)
And energetically. Okay. Money is money is a currency. Right? Money is energy, and it I would argue it maybe wasn’t necessarily even about the money, but it was the it was what money meant.
Victoria Volk
(00:54:14 – 00:54:28)
Right? What money meant and where you were at in your life with money and that relationship with money. And so as you were making space energetically, did you start to see opportunities coming in?
Debbie R. Weiss
(00:54:29 – 00:54:55)
I did because I opened my eyes to things out there that I never would have thought of before. Just like selling the Stop on Facebook or Shipping the things. Right? And then I started thinking, well, it was such a journey. I started thinking to myself, well, I can go to my insurance agency, right, and try and figure out a way to sell more and make more money, which I did look at that.
Debbie R. Weiss
(00:54:55 – 00:55:09)
But It didn’t light me up. I had been looking. What is it? I always it not at me that I could never figure out what’s my passion? What’s my purpose?
Debbie R. Weiss
(00:55:09 – 00:55:16)
Did I really wanna be an attorney? Did I wanna be a CPA? Like, who knows? I’m watching my son now. He doesn’t know what the heck he wants to be.
Debbie R. Weiss
(00:55:16 – 00:55:27)
He’s gonna be a 2nd semester junior. He’s he said the other day. Oh, I’m panic stricken to graduate because he has no idea what he wants to do. So I’ve been searching.
Debbie R. Weiss
(00:55:28 – 00:55:50)
And, At the time, I had just started using these supplements that, a podcaster that I listened to, used and was selling. And I thought, because I think I have a very you know? I’m leery. I’m a New Yorker. I’m like, oh, yeah.
Debbie R. Weiss
(00:55:50 – 00:56:08)
This is just a ploy. And I listened to her talk about it for a year or so, and I said, oh goodness. Let me just try. And for me, it really made a difference, like, in my mood, in my energy. I, you know, I was, like, ready to go, but not in a cap there was no caffeine, so it wasn’t that kind of way.
Debbie R. Weiss
(00:56:08 – 00:56:44)
And so I thought to myself, well, I’m can only be passionate about what I’m feel passionate about. And I felt like this was really making a difference in my life, so I decided this must be where I need to go. Follow this this feeling. And, I really started, I think, at that time paying attention to, like, the messages that were being sent to me. Really trying to tune into my heart and my gut instead of my mind.
Debbie R. Weiss
(00:56:45 – 00:57:12)
Because Earlier with that podcaster, actually, I signed up for a course of hers. It was more money than I could have ever imagined. Again, money was an issue. So my logical brain said, are you out of your mind? You’re supposed to be figuring out how to get more money, and now you’re spending money you don’t have, but something kept bringing me back back to signing up.
Debbie R. Weiss
(00:57:12 – 00:57:26)
What was the draw? And I listened to that instead of my logical brain. And it was all about mindset. And that was, like, start of the start of my formal training on mindset.
Debbie R. Weiss
(00:57:27 – 00:57:56)
And so it was that same podcaster who then had talked about this mastermind group that she belonged to. I had no idea what a mastermind was. She brought on her coach, and she was in an elite mastermind, which were business people who, were making over a certain amount of money But he had, like, a basic level mastermind for people making, like, 0 to 500,000, and I thought, well, I’m making 0, so that’s perfect., I’m gonna join this mastermind.
Debbie R. Weiss
(00:57:56 – 00:58:14)
They’re gonna show me how to sell this stuff, and here we go. And I walked into I I Like to say, I, like, walked into The Wizard of Oz. Where is this online world? I had no I had just been introduced to podcasts, for goodness sake. I had no idea this whole world existed.
Debbie R. Weiss
(00:58:14 – 00:58:34)
And then I saw people who were taking their experiences and sharing and helping other people just like you’re doing., Right? Which when I think to myself, I was so stuck on, well, don’t they need some certification? Don’t they? You know?
Debbie R. Weiss
(00:58:34 – 00:58:47)
Gosh. Who do you wanna learn from? I wanna learn from someone who walked in my shoes. Right?, Mean, none of our experiences are exactly identical, but there’s a lot of general stuff here that we can all relate to.
Debbie R. Weiss
(00:58:48 – 00:59:12)
And when I learned of that, I said, okay. I’m still taking my supplement. I like it and all, But that’s not it. And, it’s another whole story, but I started something at that time called the caregiver support squad, which was to help family caregivers learn to prioritize their own self care.
Victoria Volk
(00:59:13 – 00:59:21)
Which by that point, you’ve become very much an expert. Right? The hard knocks of caregiving. Right? For sure.
Victoria Volk
(00:59:21 – 00:59:22)
PhD in caregiving?
Debbie R. Weiss
(00:59:22 – 00:59:30)
Yes. That’s right. I didn’t need to go and get that PhD from an accredited university. Life experience gives you all you need.
Victoria Volk
(00:59:32 – 00:59:33)
So when did the book come about?
Debbie R. Weiss
(00:59:35 – 01:00:08)
So what I discovered after I started the caregiver support squad is the people that I was working with, it was very hard for them and understandably, as I just spilled my guts to you, to them for them not to spend the time sharing the difficulties they were having with their loved one. And I didn’t want to be about that. I wanted to be about what can we do for you. What lights you up? Let’s work together to figure out how we can work self-care into your life.
Debbie R. Weiss
(01:00:09 – 01:00:47)
And I just wasn’t at a point where I could take on their difficulties. Because it was difficult for me to sit there and listen to other people’s difficulties, while I was in the thick of it. And at that time, I realized, I feel like what I’ve learned is broader message. Self-care for caregivers, a 1000%. But I think what I’ve really learned Is that a quote from The Wizard of Oz, which is my favorite now?
Debbie R. Weiss
(01:00:48 – 01:00:57)
Got it right here. Someone gave it to me in a little makeup bag. It’s from Glenda the Good Witch, and it says, you’ve always had the power, my dear. You just had to learn it for yourself.
Victoria Volk
(01:00:59 – 01:01:00)
I just got full body chills.
Debbie R. Weiss
(01:01:01 – 01:01:39)
And how many times did I hear that quote and didn’t really get it? But when I heard it, I got it. And I want from there, that’s when I pivoted and said, if I was 50 plus and I didn’t know it, I consider myself a fairly intelligent person. There must be other people out there who are just like me, who just don’t think there’s another way. Who can tell you why they can’t because that was me.
Debbie R. Weiss
(01:01:40 – 01:01:58)
So I get it. But yet I see what has happened since I shifted my mindset. And so I said, I need to reach all of those people and shake them and tell them, no. It doesn’t have to be this way. But how do I reach them?
Debbie R. Weiss
(01:01:59 – 01:02:06)
It’s like everything else. Right? Podcasts, social media. Like, you just wanna stand and scream. I want a megaphone that everybody should hear.
Debbie R. Weiss
(01:02:08 – 01:02:28)
And, again, I never wanted to write a book. As I said, I’m a numbers person. Never thought, ever dreamt of it. And I listened to the signs. And, I, again, with a different podcast, a woman was on being interviewed, and she helped first time authors get their story out there.
Debbie R. Weiss
(01:02:28 – 01:02:41)
And I thought, this is not even a regular podcast I listen to. This was meant for me to be heard. Like, this I was meant to listen to this because other things were kept telling me about a book, and I was like, no. I can’t do that. I can’t.
Debbie R. Weiss
(01:02:41 – 01:02:56)
I can’t. I can’t. And I connected with her, and, I guess that was, that was it. I said, let me join the course. And then, couple weeks later, my husband was diagnosed with the cancer.
Debbie R. Weiss
(01:02:56 – 01:03:30)
And I went to my therapist, and I said, I’m embarrassed that I’m even bringing this up. When this is going on in my life, I feel so selfish that I’m actually still considering taking this course. And she said, no. I disagree with you. She said this is exactly what you need because you need something right now because you’re gonna be going through an intense period of time, we don’t know what that’s gonna look like, but you need something completely separate from that just for yourself.
Debbie R. Weiss
(01:03:31 – 01:03:46)
And, being the a student that I am, I’m like, well, what if I can’t show up every week? Or what if there’s homework and I didn’t do the homework. And what if I have to read out loud? And then I’m gonna be embarrassed because I don’t know how to write. I mean, I had every excuse in the book.
Debbie R. Weiss
(01:03:46 – 01:03:54)
And she said, who cares? Who cares? And I thought, well, I guess, at least, I have a good excuse. Right? You know what?
Debbie R. Weiss
(01:03:54 – 01:04:25)
I won’t show up as a bad student. I people will understand. And, you know, the minute that I was in, it was a very intimate group, all writing about different things, all first time authors. And, it was it was an amazing experience that I’m still on that has started me on a trajectory that I could never ever. I wouldn’t I wouldn’t have bet, a bazillion dollars that I would ever be an author.
Debbie R. Weiss
(01:04:25 – 01:05:10)
And now writing my 2nd book and already thinking about other books, it’s like, who am I? And all because, basically, I followed I followed the whispers and really tried to tune into my gut instead of the I can’t that always comes into my head, and that’s one of the reasons my book is named On Second Thought, Maybe I Can, because I spent my life saying I can’t and telling myself and others all the reasons why I couldn’t do something. And it could be a small thing or a big thing. And, if we just take a pause and see what lives on the other side and say, well, wait a minute. Maybe I can.
Debbie R. Weiss
(01:05:11 – 01:05:12)
That’s where my life has changed.
Victoria Volk
(01:05:15 – 01:05:18)
So good. That was all so good.
Debbie R. Weiss
(01:05:18 – 01:05:25)
Yeah. I never said it like that before. Boy, that did sound good, but it’s true. It’s true. It’s so true.
Debbie R. Weiss
(01:05:25 – 01:05:35)
I just hope I get that across. I really mean it. And I hope this doesn’t come across as bragging because it’s not
Victoria Volk
(01:05:35 – 01:05:38)
No. I’m gonna say, I want you to brag.
Debbie R. Weiss
(01:05:38 – 01:06:00)
Okay. Well, I’m gonna tell you because I’m preparing right now. It’ll have been done by the time this airs for a master class tomorrow. And, Lauren, that’s my writing coach who I still work with. She said to me the other day, have you sat back and thought about all that has happened to you this year?
Debbie R. Weiss
(01:06:01 – 01:06:11)
It’s like, what do you mean? She starts naming the things. I’m not it’s like something happens. It’s fun. It’s exciting.
Debbie R. Weiss
(01:06:11 – 01:06:25)
Onto the next thing. Onto the next thing. Onto the next thing. And I realized that that’s something that I need to get better at is in I do enjoy the moment when it happens, but then I’m very quick to say, okay. And what do I have to do next?
Debbie R. Weiss
(01:06:25 – 01:06:44)
What are we on to next? What are we on to next? And I that’s my personality. But looking back and and celebrating the wins, The big wins and the small wins. So my husband passed away December 30th, and does it the Sprinkle of Hearts store opened January 14th.
Debbie R. Weiss
(01:06:44 – 01:07:21)
That was another whole thing that was in the works, prior. And a week after my husband died, I had a TikTok video that went viral. I wasn’t even on like, I was on TikTok, but I don’t go on TikTok. I had a virtual assistant who was posting on social media. And at the time I was making videos every day with no makeup, I still do that a lot, walking my dog in the morning, and I just would turn on my camera and say whatever was on my mind, like, whatever.
Debbie R. Weiss
(01:07:22 – 01:07:57)
No preconceived nothing. And most of the time, first take, that was that. And this particular day, it started with it’s been 8 days since my husband died. And I went on to say that everything in my life feels out of control, and I think I was talking about, I’m eating cookies for breakfast, my exercise routine, and then went on, obviously, to say how my whole life is turned upside down. And it wound up getting 3,700,000 views.
Debbie R. Weiss
(01:07:59 – 01:08:23)
I got, oh my gosh. the most amazing outpouring of love through comments. I was I was blown away. Blown away. I just you you just don’t know.
Debbie R. Weiss
(01:08:23 – 01:08:33)
You just don’t know. I gained, like, I don’t know. 59,000 followers. It was it was crazy. It was so crazy.
Debbie R. Weiss
(01:08:34 – 01:09:02)
But so crazy in such an amazing way because it literally felt like the whole world was giving me a hug. And for whatever I said, I must have said something about walking, and it turned into this thing like, Debbie, I’m gonna walk with you. Mhmm. Like, I’m gonna walk this journey with you of, like, getting your life back together. It was so that’s how the year started.
Debbie R. Weiss
(01:09:02 – 01:09:19)
And then, I was able I was, let me just say, like, nobody. I have no connections, so I wanna make that clear. It’s not like, oh, she’s got a name and no. No. No.
Debbie R. Weiss
(01:09:20 – 01:09:26)
I’m an Oprah insider. $25. Right. I don’t know how many other people. Oh, millions.
Debbie R. Weiss
(01:09:26 – 01:09:37)
Right? I get an email. Oprah’s gonna be taping one of her insider shows in New York. I live in New Jersey. On this date, we, and it’s about we.
Debbie R. Weiss
(01:09:38 – 01:09:53)
And so they just asked, only respond if you, a 100% can make it because there’s limited tickets. Anyway, it was a whole thing. I was visualizing. I had a whole thing going on. I wind up getting the tickets.
Debbie R. Weiss
(01:09:54 – 01:10:18)
It was an amazing experience less than a 100 people in a little office not a little, but in the hearst office building, so not little. And at the end of the it was 2 shows, actually. And at the end of the taping of the 2nd show, Oprah was, like, hanging out. And I had taken my book. And in my book, I have the story about February 2020.
Debbie R. Weiss
(01:10:19 – 01:10:33)
And so I wrote something in the front of the book. I put a bookmark, where that was, and she was take she was wonderful. She was taking selfies with people, and I was right there. I don’t even wanna say stage. It was a little riser.
Debbie R. Weiss
(01:10:34 – 01:10:55)
And I’m waiting, looking for something. I’m waiting, and she comes up to me, and I’m holding my book. And she looks like only talking to me. And I got to tell her, you changed my life by something you said in I saw you February 2020. And she said, what did I say?
Debbie R. Weiss
(01:10:55 – 01:11:15)
And I told her. And then I went on to tell her, and I wrote about it in this book. You know, because of that, that eventually led to this book. It’s this is my, like, crappy printed picture, but it was it was incredible. I mean, we walked out of there, my cousin and I, and she said, what’s wrong with you?
Debbie R. Weiss
(01:11:15 – 01:11:26)
And I said, what do you mean? And she said, you’re so calm. And she started screaming, you just gave your book to Oprah. And I thought, oh my gosh. Oh my gosh.
Debbie R. Weiss
(01:11:26 – 01:11:47)
Like, how did this even happen? So and then a few weeks later, my book was published. That was actually before it was published, so I had this wonderful book launch. And then I represented all family caregivers on The Kelly Clarkson Show. It actually comes out today as we’re talking oh my gosh.
Debbie R. Weiss
(01:11:48 – 01:12:00)
Congratulations. Thank you. Yep. So she has a segment at the end of each of her show called what I’m liking. And so it was a Skype interview, in honor of National Family Caregiver Month.
Victoria Volk
(01:12:00 – 01:12:02)
December is National Family
Debbie R. Weiss
(01:12:02 – 01:12:05)
Caregiver Month. November was. Oh, November 12. In November. Yes.
Debbie R. Weiss
(01:12:05 – 01:12:13)
So it was November. So it comes out today, which is the 28th, November 28th. But you can always go to Kelly’s YouTube channel and find it.
Victoria Volk
(01:12:14 – 01:12:23)
Please send me the link, and I will put that in the show notes. I will. And I can’t believe I completely missed National Caregiver Month. I, like, completely missed that.
Debbie R. Weiss
(01:12:23 – 01:12:25)
Well, that’s okay. Now you won’t next year.
Victoria Volk
(01:12:25 – 01:12:32)
Now I won’t next year. Yeah., Those are huge wins. It sounds like a lot of full-circle moments.
Debbie R. Weiss
(01:12:32 – 01:13:00)
Yeah. Exactly. And like I said, it’s not like I I mean, I just explained my life to you. None of those things I could have ever imagined, predicted nothing, and it never would have happened if I didn’t just make that switch in my head and start viewing my life, my Control of my life and my circumstances differently and following my heart.
Victoria Volk
(01:13:01 – 01:13:41)
All of that responsibility that you have felt and put on your shoulders and words was on your shoulders in caregiving for others and everything that you had on your plate to do. Turning that sense of responsibility on its head and putting it towards your life and taking responsibility then for your life, that’s really the best use of the strength, responsibility. Because it is a strength. I’m a Youmap certified Youmap coach, which your son may be interested in that. I had my son take the Youmap assessment when he went to college.
Victoria Volk
(01:13:41 – 01:13:51)
He’s going into nursing. My daughters took it. I took it. It was life-affirming for me. I can I’ll put that in the show notes.
Victoria Volk
(01:13:51 – 01:13:51)
But okay.
Debbie R. Weiss
(01:13:51 – 01:13:52)
That would be great.
Victoria Volk
(01:13:52 – 01:14:20)
Youmap is amazing tool to help you discern and determine what is the best fit for you. And it’s about career and life satisfaction. But I think the message in this podcast is support, self-care, taking responsibility, and really what that message on your from the Wizard of Oz is recognizing the power that we all have within us.
Debbie R. Weiss
(01:14:21 – 01:14:31)
Exactly. Exactly. And that’s what changed my life, realizing, no. It’s not up to everybody else. It’s not predetermined.
Debbie R. Weiss
(01:14:32 – 01:14:46)
It’s up to how I respond to these things, how I choose to respond. And that’s what’s made the difference. And any it can make the difference for anyone regardless of what’s going on in your life. There’s always something you can do to take control.
Victoria Volk
(01:14:48 – 01:14:52)
How do you intend to spend December 30th this year?
Debbie R. Weiss
(01:14:52 – 01:15:01)
Gosh. That’s a great question. I don’t know. Through the whole year, as we all know, those firsts. Right.
Debbie R. Weiss
(01:15:01 – 01:15:18)
My 1st anniversary, Valentine’s Day. It was just his birthday, the end of October. Thanksgiving was his favorite holiday. They’re rough. My youngest son’s birthday is December 31st.
Debbie R. Weiss
(01:15:21 – 01:15:42)
Mhmm. So it just makes it so hard because I hate that he will think that they’ll forever be tied together. And, he’ll be 21. So, you know, I my older son, I’m not really a cemetery person.
Debbie R. Weiss
(01:15:42 – 01:16:02)
I have not been back there. We wanted to go on his birthday, but for whatever or my son wanted to go on his birthday, but, there was that was closed or whatever when we wanted to go. If that’s what my son wants, then that’s what I’ll do. I’m not sure. I think right now, I’m not sure.
Debbie R. Weiss
(01:16:02 – 01:16:29)
Taking it kinda one day at a time. But I do find that, even now, thinking as I’m talking, you know, last year at this time, I know what was happening. He was in the hospital, like, reliving that hell that he and I went through differently. I wanna get away from that feeling. Because that was the toughest time for me.
Debbie R. Weiss
(01:16:30 – 01:16:37)
So, I think I’m trying to take one day at a time. How’s that? That’s the answer. One day at a time. So you can’t?
Debbie R. Weiss
(01:16:37 – 01:16:56)
I don’t have I don’t have it. I don’t know. I don’t know. And I’ve find that I do this a lot. I have a lot of anticipation about these days, and I’ve spent so much time beforehand leading up to it that I don’t wanna say it’s anticlimactic, but it’s almost like I’m okay by that day.
Debbie R. Weiss
(01:16:56 – 01:17:12)
I’ve kind of, like, been so worried about it beforehand that I’ve worked through it by the time I get there. And in a way, I want that because I want that for my son. Well you know, for my son who’s turning 21. Right.
Victoria Volk
(01:17:12 – 01:17:31)
And and by sitting with it Mhmm. And having that time to sit with it before, you can be a better you can help him sit in his grief maybe a little bit easier for you yeah. Maybe. I don’t know. I mean, it’s hard to see your kids hurting to worst part.
Debbie R. Weiss
(01:17:31 – 01:17:35)
Right. Yeah. Yeah. That’s that’s the hard part.
Victoria Volk
(01:17:35 – 01:17:36)
To him.
Debbie R. Weiss
(01:17:36 – 01:17:52)
Thank you. Yeah. Yeah. My little guy, the one who’s gonna be 21, he’s it’s he’s a different person, obviously. And, he’s he was more removed because he wasn’t, he was here, obviously.
Debbie R. Weiss
(01:17:52 – 01:18:21)
He’s not there in school all the time, but he was more removed from the day to day, especially between, when it really got intense from, whenever he leaves the end of August until he came home on December 16th and only 2 weeks before. So he wasn’t it wasn’t his reality. And it and then it’s not his reality when he went back to school. Right? He’s of course, it doesn’t matter where you are.
Debbie R. Weiss
(01:18:21 – 01:18:47)
But when you’re not living In that space and that place, and, he’s got his separate life that he doesn’t equate with the rest of us. I think that gave him separation. Who knows down the road when and how it’ll come back, like what I said earlier. And we all know People process at different times. He really has not had, too much visible grieving.
Victoria Volk
(01:18:48 – 01:19:30)
There was something you said earlier about shaking the tree and how just being kind of on the other side of this now and still working through it, right, because we all are always a work in progress, but there was so many parallels that I drew from what you were sharing into how I feel about grief and how I just you know, the megaphone and I that’s why my art my art for my podcast is me on an island with a megaphone because you feel like you’re alone. You feel like you don’t have a choice. You wanna scream from the rooftops. And for me, it’s like it has two meanings because I also wanna scream the message that it there is light at the end of the tunnel. There is.
Victoria Volk
(01:19:30 – 01:19:39)
Is there a tunnel? I mean, how long is it? I mean, that’s up to you, really. I mean, you do have some power in that. You know, there is no time line.
Victoria Volk
(01:19:39 – 01:19:56)
You’re you’re always gonna have I think it was grief. It’s like people just think, like, I’m never gonna be sad. You’re like that you have to get over it. And getting over it means that you’re not gonna be sad anymore. And the thing even with grief and the work that I do with clients, it’s I never promise you’re never gonna feel sad again.
Victoria Volk
(01:19:57 – 01:20:16)
I tell you, you will feel sad because those anniversaries come around. Right? You’re still gonna feel something. And you will because that relationship continues. The relationship with your husband is still going to continue, just in a different capacity in how it lives within you.
Victoria Volk
(01:20:17 – 01:20:44)
And that’s the thing that we have a choice over is do I want this thing to, like, pull me down, take me out of my life experience. Have me checking out of my own existence, or can I allow it to move through me and with me to help me expand and recognize my power and see my own potential?
Debbie R. Weiss
(01:20:46 – 01:21:00)
Exactly. Exactly. I mean, I couldn’t I couldn’t agree more. And I do feel like, I do, you know, something happens. Been some looking up in the ceiling or, talking to him all the time.
Debbie R. Weiss
(01:21:00 – 01:21:38)
What you know, I I feel his presence. I feel comfort knowing that he’s at peace, at least, you know, out of his physical body, whatever you believe, but at least I know he’s no longer suffering in that way. And, I can wish every day for the rest of my life that it didn’t turn out this way, but that’s not gonna help me? Right? I mean, it doesn’t work this way.
Debbie R. Weiss
(01:21:38 – 01:22:06)
Life takes twists and turns that none of us would choose. But it’s how we respond to those twists and turns and to sit here and feel sorry for myself and hope and wish and why and question. You know? Yeah. Of course, we all have those moments, but they should be far and few between, especially as we get a little further away from the experience.
Victoria Volk
(01:22:07 – 01:22:10)
Is there anything else that you would like to share?
Debbie R. Weiss
(01:22:10 – 01:22:38)
I think I said everything I have in my head. You got it all out of me and then some that I wasn’t expecting. So, I really do feel like I hope that you and I both got our same similar messages across that if you’re a person out there thinking because I was thinking, oh, sure. They’re saying that, but they don’t know my circumstance. Right?
Debbie R. Weiss
(01:22:38 – 01:22:53)
I could say, oh, but yeah. But I’m dealing with this and this and this. Mm-mm. I won’t have it, and you shouldn’t have it either. There are certainly times where life gets more intense.
Debbie R. Weiss
(01:22:53 – 01:23:01)
Right? Those 6 months that my husband was dying, it was super intense for sure. But you know what? I wrote my book.
Victoria Volk
(01:23:02 – 01:23:40)
And the key thing here and I wanna just circle back to what you said about the caregiving groups and how it was too much for you to hear, their current struggles and things. And it really does parallel grief support groups too because they can be the most supportive places, but they can also hinder your progress because It really is a repetition of the story. Right? It’s this it that’s what happens at these. You can create great bonds and friendships, but at the same time, is it moving you forward?
Victoria Volk
(01:23:40 – 01:23:51)
You’re not taking action. It’s the action that you take that makes the difference. And that’s what I heard you say when you were speaking about that too, and same with grief same with grief.
Debbie R. Weiss
(01:23:52 – 01:24:22)
Absolutely. I’m such a big fan of support groups because I do find them helpful when you are in a room with people who understand. I did not choose to do a grief support group because I felt like I didn’t need it. Whereas, I’ve been in many other types of support groups and more recently with family members of those who suffer with mental illness. And, there’s times when I need it and times when I don’t and times when I’m on there thinking, okay.
Debbie R. Weiss
(01:24:22 – 01:24:44)
This is not healthy for me. So, it it really just does depend upon where you are, the mix of people, the facilitator, but you just have to know what’s good for you pay attention to what’s working and not working for you. And listen to the whispers. Action is yeah. Listen to the whispers, and action is so the key.
Debbie R. Weiss
(01:24:44 – 01:25:02)
When other people we’re reflecting on my experience, and they said to me, well, you took action. And I don’t think I recognize that since so many of us think about all these things. Right? And, actually, I don’t even remember what it was. It might have been about the book.
Debbie R. Weiss
(01:25:02 – 01:25:19)
And a woman I ran into, she said, gosh. You know? You did it. She said, for 3 years, I had this idea, whatever it was. And she said, I just found, writings about it or whatever it was, 3 3 years later collecting dust.
Debbie R. Weiss
(01:25:21 – 01:25:35)
And, 3 years is gonna pass. A year is gonna pass. 2 months is gonna pass. Do you wanna have that collecting dust? Whatever that is, whatever progress you’re looking to make, time is going to move.
Debbie R. Weiss
(01:25:36 – 01:25:38)
Make make the best use of it.
Victoria Volk
(01:25:38 – 01:25:40)
It waits for no one.
Debbie R. Weiss
(01:25:40 – 01:25:41)
That’s it.
Victoria Volk
(01:25:41 – 01:25:44)
Where can people find you if they would love to connect with you?
Debbie R. Weiss
(01:25:45 – 01:25:52)
Find out the yes. Is the best place. Thank you. It’s Debbier. The r is very important.
Debbie R. Weiss
(01:25:52 – 01:26:13)
Otherwise, you wind up in a realtor. Debbierweiss.com. And all my information is there. I am starting a group coaching program will launch soon after this podcast airs, so it’s starting on January 9th. So if you’re interested, go check it out.
Debbie R. Weiss
(01:26:13 – 01:26:33)
I’ve got some other offerings on there, and I also have a bunch of free different downloads, help you find your Inner power, find time for self-care, and then, some morning what I call morning sprinkles of goodness, which is some journal prompts and whatnot. So and all my social media and all the things are all there.
Victoria Volk
(01:26:34 – 01:26:38)
Is the January 9th, is that, group is that for caregivers?
Debbie R. Weiss
(01:26:39 – 01:26:46)
Nope. It’s for any woman who is ready to make a change in their life and rewrite their story.
Victoria Volk
(01:26:47 – 01:26:56)
Yes. I’m all about that. Thank you so much. This has been a wonderful conversation. Thank you so much for everything that you’ve shared.
Victoria Volk
(01:26:56 – 01:27:20)
And even if it was the 1st time you’ve shared it, it is my honor to have been a witness and to hear it. So thank you so much for sharing it with my listeners. My thoughts are with you and your family as you go through the holiday coming up and your son in the anniversary. And, it’s that’s where you have to rely on, take your own advice. Right?
Victoria Volk
(01:27:20 – 01:27:25)
Self-care Yes. Do what you need to do for you. So thank you so much for being here.
Debbie R. Weiss
(01:27:25 – 01:27:28)
Thank you for having me. This has been cathartic.
Victoria Volk
(01:27:28 – 01:27:35)
Oh, I’m so glad., Thank you so much. And remember, when you unleash your heart, you unleash your life.
Cancer, Chronic Illness, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Melody & Gracelyn | Luna Peak Foundation: Filling a Gap in Cancer and Grief Support
SHOW NOTES SUMMARY:
Melody and Gracelyn are an aunt and niece team behind Luna Peak Foundation and Luna Peak Publishing. Through their nonprofit, they publish photography books, engaging workbooks, and children’s books that show people they are not alone in grief.
Their work helps dispel stereotypes about cancer and grief and provides resources for the whole family to help heal. They have donated over 2,000 books to hospitals, therapist offices, schools, and universities.
Nonprofit work aside, Melody and Gracelyn discuss their grief experiences, resulting in the women joining forces to offer grief and cancer support. At age six, Melody was diagnosed with acute lymphoblastic leukemia and was given a 50% chance of surviving beyond one year; she underwent treatment for the next three years. She’s been a cancer warrior ever since. Gracelyn was inspired to support others after the unexpected loss of her father when she was twenty-six.
Throughout their adversity, Melody and Gracelyn wish people knew they are not alone and that cancer and grief support exists. And that it is possible to smile and laugh again after loss.
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.
Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.
CONNECT WITH VICTORIA:
Victoria Volk: Thank you for tuning in to grieving voices. Today, I’m excited to talk to an aunt, a niece duo, they are Melody and Gracelyn, and they are the team behind Luna Peak Foundation and Luna Peak Publishing. Their work at Luna Peak uplifts, multicultural cancer, and grief survivor stories. Through their nonprofit, they published photography books, engaging workbooks and children’s books that show people that they are not alone. Their work helps just spell, stereotype, about cancer and grief and provides resources for the whole family to help heal. Today, they have donated over two thousand books to hospitals’ therapist office schools and universities. Melody was diagnosed with acute lymphoblastic leukemia at age six and has been a cancer warrior ever since. She was given a fifty percent chance of surviving one year and underwent treatment for three years until age nine. Being a survivor at a time when not many survived, set Melody on a course to help newly diagnosed cancer patients. Melody studied sociology in art history at the University of California, Irvine. Gracelyn studied sociology at Santa Clara University and received a master’s degree at Columbia University, inspired by the sudden loss of her dad, Gracelyn has built a fund grief community an online platform at snapshots of life after loss. Gracelyn is certified by the David Kessler Grief educator program and is a trained end-of-life doula by the Alua Arthur growing with Grace program. Thank you so much, ladies for being here today.
Melody & Gracelyn: Thank you so much for having us.
Victoria: So I could go into a lot of different directions here to start out, but I just we kinda know understand, like, the backstory of how you both are using your history, your experience, through Luna Peak. But how did you to come together to start it? What was the was there a conversation? Was there a question, like, what was it that sparked the two of you to come together, to share your experiences through your work?
Melody: I’ll take this first. So basically, Luna Peak has been a dream of mine for many, many years before we started it. I just didn’t know how to start a nonprofit and how to do all of these things. And I had a few books even written in some old journals. And I talked to Gracelyn about some of the ideas I had and, you know, how I could, you know, make them work. But then the sudden loss of her dad and her grief kind of sparked us coming together and creating a luna peak foundation because we both wanted to take our difficult experiences and turn it into something beautiful that can help other people. But when Gracelyn finished college and was in the workforce, she had a little bit more knowledge of how to start all these things. And so when we came together, when luna peak was formed,
Victoria Volk: sounds like a dynamic duo because you have that marketing background and Gracelyn. Mhmm. And So how long did it take? Because I’ve talked to a few nonprofits to this up to this point, and it is like this grueling process in the start from the sounds of it. And even when I think about starting a nonprofit, I’m just like overwhelmed.
Like, how did you did was there local resources that you tapped into? What did that those early years look like in starting Luna Peak.
Gracelyn: We kind of started doing this work before everything became official, so it was kind of a rolling basis. Basically Melody’s idea to do a massive photography project of cancer survivors we started all of this and then slowly we realized, okay, we need to set some structure to this and really, you know, make sure to put a foundation in place so that we can continue this work. And then expand it into the grief community as well. So it’s taken a few years. We were a private charity person, then we became a public charity so now we’re officially Luna Peak Foundation Inc. So it’s taken a bit of time, but we rely on our village and we rely on our board members and other people with expertise to come in and help kind of fill in some of those gaps. And we kind of learn as we go. Lot of research. Yeah.
Victoria Volk: What is one piece of advice that you would give to others who wish to start a nonprofit?
Melody: I would say be patient and really think about your mission before for me. Your nonprofit. You like, figure out your why before you would form it. That’s my advice.
Gracelyn: And definitely, make sure that the work that you’re doing is filling in a gap. Make sure that you’re providing something unique in the space. And know how your talents are going to contribute and use that mission to actually make an impact because there’s so many nonprofits out there, but it is really cool to think. Alright. People have figured it out before we can figure it out too.
Victoria: Can you speak to a little bit then how each of you what piece you thought was missing and what individually you bring? What gap are you filling? How do you articulate that?
Melody: Yeah, for me, I’ll speak for myself. I create books that I wish existed when I was sick, that I like, resources that didn’t exist at the time when I was younger. And one of the pieces is multicultural stories. So if I did find any information on childhood cancer, survivor, or anything like that. It just didn’t look like me. So I really wanted to make sure that, you know, there’s a lot of diversity in our books. We make sure that everybody can see themselves in our books. So that’s a piece that I think is unique. And also, Like, for us, we also include families. So we don’t just talk to cancer survivors or cancer fighters or breeders just to them.
We talk to the whole family. Because the whole family’s grieving, the whole family has cancer. So that’s our mission.
Gracelyn: We’re trying to humanize the topics cancer and greed because they’re very scary, but they’re very common experiences. So through showing multicultural stories and especially through the photography that we do. We knew that that was kind of key to impacting people. And people responded really well to seeing the eyes and faces within the photography of people they could relate to because sometimes that’s not out there. Sometimes people wanna just see a story, sometimes will wanna engage with it. Sometimes people wanna share their own story too. But that kind of all unfolded after we started to humanize the topic and really show what people look like. What does cancer look like? What does grief look like? What does grief look like? Ten years from now? Twenty years from now? Those are all questions that we had. And we kind of what about this process in a very curious way. We needed these books then and we need them now. So, you know, we hope that these large-scale photography projects and workbooks for kids, workbooks for adults, workbooks for the siblings of kids with cancer, And sometimes these groups that are oftentimes forgotten. In terms of providing support, we hope that they can feel to work that we do.
Victoria Volk: So if someone were to purchase a workbook, is this something that they do on their own time at home? Is their support as they work through it? How do you support people as they utilize the tools and the resources that you have shared?
Melody: Well, we have a large online community. So people reach out to us constantly via DMs or comments on our pages. We also will do workshops where we’re helping them work through the book. Most of those are in person, but we’ll break it up so that it’s not so overwhelming. It’s not homework. It’s not like you have to do twenty pages a day. You find the page that speaks to you and you work on that page. That’s how we work. But for the most part, I mean, people buy it and they kind of go along on their own, what speaks to them, what they think they need that day. So if they want something that’s snarky and funny to help them heal that day, they find that page. But then there’s some pages that are very much just in remembrance of their person that they lost. Or talking to their doctor or having their doctor sign a book for them. So it varies. Different people
Gracelyn: Different people Different pick the different times. And everybody’s different. Right? You never know what kind of mood you’re gonna be in, but if you pre-open a journal that’s kind of intimidating, so why not have some of these directed prompts? Why not have some humor? Sometimes in your grief, you do just wanna laugh.
Victoria Volk: I’m glad you brought that up in the pre-conversation form that we have, that I share. You had wrote about humor and dark humor, how helpful in healing. And I’m glad that you mentioned that because say, you might say something that other people are just like, oh my god, I can’t believe said that or I can’t you know, but if when you’re in it, it’s like anything to lighten the mood a little bit, to make yourself feel a little bit lighter. And I know for a lot of people who might have that personality of self-deprecating humor, which is kind of my personality a little bit. You know, I might have that sense of humor that many people may not get, but I think it’s important. It helps to I don’t know. I guess, feel lighter. Yeah. I go in the moment, I suppose. But now that we’ve talked a little bit about Luna Peak, I would like to dig a little bit deeper into your individual stories because really that’s how Luna Peak was born. So you had shared about melody about your diagnosis as a child? And how not many children survived? What do you think was the difference for you? I mean, given a fifty percent chance of survival, which I don’t know, you can speak to that too, but in my opinion on that, it’s, you know, we are all statistic of one, like everybody is everybody is different and everybody responds to treatment and all of that differently. And so I think that can be really damaging to the person’s psyche. An adult, not much less a child, to be told that. So can you share a little bit about that experience? And what was happening with your family at that time?
Meldoy: That was very, very time. I’m from a large family. I’m the youngest of five. So it definitely affected everybody. Everybody differently because we’re we have big age gaps.
So some of my siblings were adults when I was diagnosed. So the sibling that was still a child had the worst time with it. But I have to say, like, being a kid, I was six years old, So I kind of didn’t know anything different. I thought treatment was normal. You know, going to the hospital was normal. And I don’t think there’s any rhyme or reason why I survived and somebody else didn’t. It’s luck. I think I was lucky. I think that I was very lucky that I was diagnosed early. My mom felt lymph nodes on my neck and kept on persisting, and the leukemia hadn’t shown up in my bloodstream yet. So it would have been very easy to just say, okay, you know, she’s fine. We’re not gonna go back to the doctor, but my mom persisted. And the cancer was found in my bone marrow and spinal fluid. So luckily, she got those extra tests. So I was diagnosed a lot earlier than I think some kids you know, the diagnosis comes later and then it’s harder to care. But in the eighties, when I was diagnosed, it really was kind of a death sentence. You didn’t you didn’t think you were going to survive at all. And in our neighborhood, there were three kids that had cancer, and I was the one that survived. So, yeah, a lot of survivor guilt with that. So, like, a lot of people be like, what did you do different? It’s like, I didn’t do anything different. I was very lucky. But one thing that I think did help was staying positive and continuing to live life as a normal child as much as I could. So I tried to attend school as much as I could, and I tried to stay with my sport. I was a swimmer. So my parents, you know, would make sure that I was still attending swim meets and swim practice and kind of a little bit of normalcy.
Victoria: Had grief been something that had been a part of your life, up to that point? Or as you were going through your treatment? Like, is that something that was openly talked about in your home?
Melody: So not openly talked about, but experience. A month before I was diagnosed, my grandfather died very quickly from a colon cancer diagnosis. So, you know, my father had to deal with his dad dying and then me being diagnosed in a very short amount of time. So I knew what grief was and I knew that our family kind of suppressed it. You didn’t talk about it. You dealt with it on your own. But, yeah, I had just attended a funeral right before I was diagnosed.
Victoria Volk: Wow. How do you think that experience has evolved with you? Like, how do you feel like you’ve evolved maybe with your grief from that experience over time? Because, I mean, you had obviously, a loss of some childhood there, even though your parents made an effort to make sure that you had as much of the childhood as they as you possibly could. But how do you think that that has how you’ve evolved with that experience over time?
Melody: Yeah. I think that I learned a lot about grief because it was constant. A lot of friends were dying. So I think I learned how to live with it and not fight it. I guess, I’m okay with feeling those feelings. And I think a lot of people try to hide their grief. So I think it was it was good for me to sort of I mean, I don’t wanna say, grow up with grief, but I also had to grieve, you know, my childhood, and my parents had to grieve the child. They thought what they were going to have. Because you think you’re gonna be taking kids to baseball games and you think you’re gonna be taking your kids on vacations, but instead they were taking you to chemotherapy. So there was a lot of grief in our house for sure.
Victoria Volk: My dad was diagnosed with cancer. I was about six. He was given about six months to live. But he lived sixteen months and ultimately he passed away when I was eight. And so I under when you say, like, the whole family grieves, the whole family experiences, the cancer. That’s very true. It’s you know, I wasn’t and we were separated too because his treatment was, like, three hours away. But at that point, there really wasn’t nothing they could do him, but I understand where you’re coming from, how the whole family just experiences it, you know, full on. Right? You bring up a good point with losing other friends, right? Because as a child experiencing cancer and going through cancer, you meet other kids who are going through cancer treatments and things. Just as adults who might connect with other people who are going through cancer treatments and lose friends along the way and you don’t understand, well, why am I still here? And why did they pass away? Children experience that too, and that’s something that really is not talked about. Do you have a resource for helping the parents assist the child and losing other friends to the same thing that they’re maybe not the same thing, but a similar experience.
Melody: One thing that did help me, and this is gonna sound super crazy. I told this story before, so Graceland knows what I’m about to say, but I planned my own funeral at six. So when I was given it in a fifty percent chance of survival, I plan my own funeral, and there was something very empowering about that because I felt like if I died, I knew that things were gonna go the way I wanted them to go. So I chose my plot, which is still sitting there. I made sure that it was overlooking the pool because I wanted to look at my friend swimming.
So I chose my own plot. I chose my own coffin. Like, all of the crazy things that, you know, people go through. After somebody dies, I did it all before. And there’s something very good about being able to I mean, healing. It was healing for me to know that if I wasn’t here, that things were gonna be the way I wanted them to be. And I allocated which toys are going to which friends. So, I know, crazy. But so that was something I would actually, you know, advise people to do if you know that, you know, if somebody says you have six months to live, like, plan it because It does. It feels better. It really does feel better.
Victoria Volk: Now I’m sure people who are listening like me are curious. How did that come about? Like, is that something your parents, like, hey, how would you like to plan your own funeral? Like, how did that come about? Like, is it just, like, you know, were you beyond your years as a six year old you think?
Melody: For sure. Yeah. I don’t know if it was the cancer diagnosis or just who I am, but I felt like I was an instant adult at the moment of diagnosis. I don’t know exactly the moment that came about, but I know that I have a quirky mom that, you know, does things differently. And so it was probably her saying, hey, let’s go, you know. And we live in a really small community in California, and everybody kind of came together to help. So I’m sure that, you know, maybe somebody said, hey, you know, we’ll give you a discount on this or that or, you know, trying to help the family. So maybe that’s how, but I really honestly don’t know what started it, but I know I actually had a really good time doing it.
Victoria Volk: That’s interesting. I would say you’re probably an old soul. So, Gracelyn, I know you mentioned earlier that a father had passed away when you were twenty six. Is he your brother? Melody?
Melody: My brother-in-law.
Victoria Volk: Oh, brother-in-law. Okay. Was that a sudden loss for you or was that kind of expected?
Gracelyn: It was a sudden loss. So I thought I was actually training for a mudrun, and he was on a run. And he had a heart, like, a cardiac event it wasn’t exactly a heart attack. It was an electrical issue with his heart. So it was very sudden. I was in New York at the time. But Melody is here and actually, you know, it’s Melody’s brother-in-law, but really he was kind of a father figure to my aunt as well because we all kind of grew up together. Melody was kind of like the first child in my family because of the age gap between Melody and my mom. So she was kind of raised as their first baby. So we’ve been on family vacations together. We’re all very tight knit. So, yeah, it was a very big shop. It was actually seven years ago this week.
Victoria Volk: Can you speak to what you’ve learned through working with other grievers and survivors of cancer versus maybe survivors of the family left behind due to a sudden loss, like do you have anything specific that you did that helped you and that you have passed along to others that you’ve worked with and and and shared your resources and things with.
Gracelyn: You know, I don’t think anybody could really prepare you for the finality of someone being gone. Whether it’s a sudden loss or an anticipated loss. I mean, just the effect of having somebody there one day and not the next. It’s just wild and it’s so difficult to cope with that emotionally and physically to just you know, that person’s just there’s such a large space. There’s a large space in your heart. There’s a large space just in your vicinity, in your home, just somebody missing from the table. It’s just a very crazy experience, and it’s really difficult to get used to that. But I think having stories of other people learning how to cope with that has helped me I think when I started the process of interviewing and photographing creepers, I was just two years into loss. And I was very much broken. I wouldn’t definitely describe myself as lost as broken. You know, I had already gotten a career started, but when you experience that type of loss, it feels as if the life that you were living is gone. Right? You have to start your new life without them because everything is just reshuffled, all your priorities are different, everything that you thought mattered, maybe doesn’t matter as much anymore or different things matter more now. So, you know, I would describe myself as very very broken and lost and listening to people’s stories. And connecting with people either from my past or even connecting with our own family members was very healing for me. And the more that I started to interview people and get to know their stories and connect with them over this shared loss, the more I figured out, oh, okay, I don’t have to grieve exactly the way that they had grieved, but I can figure it out for myself. And that was kind of a big turning point at least for me. And, you know, even reconnecting with family members who are part of our project, it was crazy because, you know, in the case of even Melody’s dad, not having the opportunity to grieve his own dad while Melody was going through treatment, well, you know, that I was able to reconnect with him and get his grief story through this project. And so each of us with a father loss connecting And this is my grandpa who I’ve always grown up with. And I didn’t hear anything about his grief until, like, I sat hand out, and I learned what it meant for him as a father, you know, as a fatherless father going through other types of adversity in his life and how he started to rebuild.
And, yeah, maybe our stories aren’t completely the same. And I don’t think they have to be the same. To learn how other people have gone through it.
Victoria Volk: I totally one hundred percent agree. And that’s really the why I love this podcast so much because I’m storytelling. Right? People are storytelling. They’re telling they’re sharing their stories. And you’re sharing the stories of others through your photography in the book. I used to be a photographer. So it never occurred to me to, like, capture other people’s stories of grief through photography. Had you had an interest in photography before that project?
Gracelyn: I think I’m known as the person in the family who is like the annoying one who always demands a photo. Yeah. And I think everybody who is annoyed with it until my dad died, and now we’re like, oh, we have so many photos. That’s great, actually. So we’re a very decent eventful type of family. And, you know, it’s not like we were experts before we started this. We weren’t photographers by trade, but you know, we kind of started into it and we just made sure to focus on the eyes and the faces and kinda people bring their mementos to the table and share their story. And I think the point kind of came across as we went through it.
Victoria Volk: One thing I wish I would have done is purchase the book before we got on this call because I would have loved to have paged through it and been able to speak to it myself personally. So I do look forward to checking it out myself. So thank you for that work that you have done and put into that. And both of you for Luna Peak foundation because I’m sure that there are children who are feeling happier and lighter because of the resources that you’ve shared. Like, I’m not alone. Because even as children, they can feel alone and isolated in their grief. And I didn’t ask you yet, Graceland, but was grief something that was talked about in your home growing up?
Gracelyn: Yeah. It wasn’t. And you know, I had experienced a loss of an uncle who actually lived with us. And I think about my dad’s story, my dad had actually lost everyone except for her sister in his immediate family.
Victoria Volk: Okay.
Gracelyn: Very young, actually. So, you know, he had even gone through five different close losses before he passed away, very suddenly. And, you know, he never talked about it. And so that is kind of an interesting element to it and that I’m perpetually curious about that. You know, how did he get through the loss of his dad, his mom, his sibling, another sibling.
You know, how did he get through it? And that’s kind of still a mystery. And so I think part of work is kind of digging into it and, you know, laying bare all of these unspoken pieces of grief and other people’s stories. Because I kinda don’t have any answers myself, and it’s hard to so you actually go through it, which is an unfortunate reality of a lot of people’s grief experiences.
Victoria Volk: You know, I say, like, you know, if you’ve been with the same person for forty, fifty, sixty, seventy years, and, you know, spouses, let’s say they’re married, and one of them passes away. And it’s not uncommon that the other spouse passes away shortly thereafter, and they say, well, he died of a broken heart. Perhaps that is part of it with your dad, that he had so much loss that he didn’t complete those emotions for himself with all of those losses. It wasn’t, you know, something that he just buried and stepped down and, you know, perhaps it was a broken heart. Literally, like, a broken heart. It’s not about digging up the past and hashing everything out. Right? Because all relationships are different and there’s less than loving relationships and there’s loving relationships. But regardless of what kind of relationship you have with your loved ones, there’s gonna be stuff that upsets you and makes you angry and sad and maybe resentful and all of these things and, of course, lots of love and joy in memories too, but that’s, you know, the polarity of life. Right?
So what is your training through the David Kessler grief educator program taught you that you may not have realized before any aha moments through your training and things.
Gracelyn: I think what I found most valuable was the thoughts on children’s grief and how they go through it. Because I lost my dog when I was twenty six and Melody has a lot of experience with grief as a child, but that was something that I wasn’t as familiar with. And to hear some of the stories about what he has done therapy and to think about how play is incorporated into children’s grief and how that can be helpful. For them or how they can compartmentalize on, like, adults can in their grief. They can kind of go in and out of their grief. A lot more than an adult can for example. And so that has helped inform the work that we do in talking to adults. In, you know, hosting these workshops and just being a general resource for people and creating a kids version of our group workbook for example. And it kind of helped us organize some of these pages too because kids do wanna draw. Kids do wanna talk about their memories. They do wanna talk about their loved ones favorite things. And how can we do this and kind of interleave more playful activities in between it? Or how can they use their creativity to unpack their grief experience? And even if they might not fully understand what grief is, they’re still grieving. So how can we do this in a very honest way and invite them and welcome them to start to process their emotion? And so I found that to be really useful. From the grief educator program.
Victoria Volk: I think it’s important to mention too that the parents or the caretakers or caregivers of the children are open to their children talking about their loss and their grief because for a lot of parents in that situation, let’s say they lost their parent. The child lost their grandparent. There I’ve personally heard of situations where the parent does not want the child to bring up the grandparent because it sets them or it makes them sad or whatever. And but really, it’s not about you, the parent. Right? Like, and maybe that’s part of the lesson here is that if you’re not willing and open to talk about your own feelings and your own grief, your child is not going to feel safe talking about their own. I’m certified through the grief recovery institute and there’s these six myths of grief and one of them is you know, a few of them don’t feel bad. Replace the loss. Grieve alone. And these are things that we learn that is emulated by our parents and caregivers of how to how to deal with grief when something happens. Like, they don’t talk about it, so I guess I can’t talk about it or I’m told not to talk about it. So now I gotta go grieve alone. Right? And so we I can speak to that personally as a child who lost a parent as a child. There has to be space for children to let that go and to express it. And so I love that your program incorporates that, but the parents really do have to be open to that to their child having that experience and sharing it with them. Otherwise, they grew up a griever as an adult that’s like many of many people walking around stuffing their feelings and not talking about it. Right? So I’m glad that as a society, I think we’re getting better at this. I think we’re getting better as adults sharing and talking and communicating and demystifying death and dying even too. Right? Like, it doesn’t have to be this even as an end of life, Dula, which you are a trained in a life dual as well. So am I? It’s so much in common. It’s important that we are able to have those discussions of what is important to us at end of life to there are so many things we could talk about here, but what piece of advice that you would give a young adult who has experienced a loss of a parent or someone significant. I know you had mentioned the things that helped you, but if people aren’t sure what to do or where to turn, what would you suggest?
Gracelyn: I love saying that, you know, you can carve your own path I think everything is shopping after loss and the change just keeps coming. And the sooner that you can roll with the punches and welcome those changes, the sooner you’ll be able to cope with it in a healthy way. I think not a lot of people understand at least from the outside, when you go through grief, it’s not just the grief of your person. There is an entire ripple effect. And it affects your whole family, it affects your whole network, your job, where you physically are, just so many things can also change and so many different secondary losses that come with it. And I think there’s so many stereotypes and I think as a griever, there’s so much dancing around uncomfortable topics and not making other people uncomfortable with what you’re going through. And it’s okay to carve your own path, and it’s okay if you end up doing something, you had no idea that you would be doing. I mean, I’m really shocked by everything that we’ve created. And this is just kind of where my life has led me, but I think my dad would have I was crazy for quitting my day job and for quitting a very stable day job in corporate America to, you know, just try this out. So, you know, it’s okay that your life might look different. It should look different after loss. And I think part of embracing that change is honoring the fact that the loss has occurred. And to acknowledge it, why would your life look the same when some of you that you love so much is gone? So Yeah. I guess it’s twofold. Be okay with carving carving your own path and be okay with the changes that just keep coming.
Victoria Volk: My last guest on the podcast, she said something that was very poignant. It’s very simple. How do I want this to change me? Because we do have a choice. You know, it can really derail our entire lives. Loss and grief can derail our entire lives. We can base our choices and our decisions of that emotional weight that we carry or we can do something about it. So thank you so much for what you guys have created. And I want to ask to, what do you feel like are the gaps right now that you see still in the grief and end-of-life space?
Melody: I think that talking about it is always going to be a gap. So that’s why I’m very proud of Gracelyn’s snapshots of life after loss on Instagram because she’s created a community of people that can talk. So seeing other people talk triggers you to talk and tell your story and hearing other people’s story. So it’s this like she said, it’s this ripple effect. So I do think that, you know, storytelling is important. And what you’re doing is important. And, you know, I do think that the gap is finding someone or finding other people that are like you that are grieving similar losses as you that connection. So I think the connection is needed. And there has been so much progress with celebrities talking about grief, grief in
Gracelyn: the news, especially with COVID. There’s so much more talk about grief, which is, you know, incredible and you see so many creative people using their unique talents to draw, to create films about grief in a very real way documentaries, and that’s been a really awesome thing to see. I mean, we’ve been doing this for about five years, but you know, still more keeps coming out and I love seeing that. It’s really empowering even for me as a brief creator, if you will. But, you know, we always need more stories of men talking about their grief. We need more stories of people talking about their grief when they grew up not having grief. Great resources. One of the people in our project is actually a family friend. He’s holding it down as sixty six years after loss. So we have, like, a whole range of people who talk about their loss, and it ranges from one to sixty six years. But, you know, to even have somebody come to the table who had no resources to then share about six decades worth of grief and what he went through. The more that we get these stories and we get men, we get people who are of different generations talking about you know, the landscape and what resources they had and what wisdom that they have to share. The better we’re all better off hearing the experiences of someone who can relate to and, you know, and then learn from people who have a different background. So we just hope that there is a lot more age diversity cultural diversity, gender diversity, all the diversity, I think we’re all better off. You know, seeing and hearing those types stories.
Victoria Volk: Was it just you or are you the only child in your family, or did you have a sibling that you experienced the loss of your father with?
Gracelyn: I have a brother. Yeah. He’s older.
Victoria Volk: Did it bring you closer together?
Gracelyn: Yeah. We were very tight knit. I would say we’re a very, very close family, which is why it’s been hard to go from a family of four to that kind of rebalancing act of going to you know, become a family of three. But, yeah, we’ve gone through so much together and, you know, it’s really shed some light on all the different types of loss and grief that you can go through. And I really see him as a companion in my grief, and I’m thankful that we’re actually five years apart, so he’s five years older. And he has more memories than I do with my dad, and sometimes he helps fill in those gaps for me. And even though we’re both adults when it happens, you know. Mhmm. Still those five years are five years of, you know, more he knew about my dad, and I’m really thankful that he is a friend in this process. He is my best friend. Yeah.
Victoria Volk: Do you highlight also stories of people who may not have had someone die, but still have experienced maybe estrangement or maybe they were adopted and they don’t know who their parents are situations like that. Do you address or do you highlight all types of loss? Or is it mostly people that have experienced the death of a loved one?
Melody: So far, it’s only been the death of a loved one, but we acknowledge all types of grief, obviously. And where we have a few things in the works that will expand on types of greed and types of loss, but it’s still more loss than you know, grieving something, you know, grieving a change in your life or something like that.
Victoria Volk: How would you to define grief?
Melody: I guess, for me, I mean, this it’s a common saying that brief comes and waves. So it’s a feeling that’s ever-changing. It’s a constant changing feeling for me and we talk about moments of grief that come and go and those moments even change. You know, we feel like memories. So you hear a song about your person on the radio. And sometimes that song will make you cry, but sometimes that song will make you happy. So there’s, you know, creep I guess there’s no definition for me. It really is just an ocean. Grief is an ocean.
Victoria Volk: How about you, Gracelyn?
Gracelyn: I think it’s just a part of you. I think it’s something that is just forever than there. Like almost physically, it’s just a part of your body that’s just always on you. One of our participants actually said that he was under the influence of grief, and we really loved. We really loved that quote because It’s just and that kind of just comes over you, you know, in good ways and in bad ways and everything in between, but we thought that was, like, a really good way to explain how grief just kind of overtakes you sometimes.
Victoria Volk: That really could be a really snarky and funny bumper sticker. Is there anything else that you would like to share about Luna Peak Foundation or Luna Peak Publishing? Or about your stories?
Melody: You know, I like to tell people that when you know a griever, it’s I we get this question the most, actually. Like, my friends, you know, dad just died. What should I do for them? You know, because we wanna help our friends or, you know, our companions that are dealing with grief, but often people don’t know how to help. And since everyone briefed you have to know the person, but I feel like Gracelyn’s book, our book beyond wreath, is probably one of the best things to give to a new griever. Because they have so many resources in one place. They can find someone that is similar to them or how many years out of grief because one thing we want to know is what is grief like five years from now, ten years from now. And you can find that in the book. And I certainly don’t like getting flowers for deaths or for grief because, I don’t know, the smell of the flowers, like, reminds me of funerals. It reminds me of death because the flowers die. So I like to give our book. Obviously, I do, but I tell people, like, something that’s tangible that they can hold and they can keep with of them is better than a bouquet..
Victoria Volk: That’s great tip. I just wanna share a resource with you both through the grief recovery institute, the founder of the grief recovery institute co-authored a book called the grief recovery handbook but in that book, they define grief as the loss of hopes, dreams, and expectations, and anything that you wish would have been different, better, or more. And for me, that, like, totally rings true for I mean, that covers all kinds of grief. Right? I mean, loss of hopes, dreams, and expectations. I mean, I can be for relationships. I can be for your life. It can be your career, money, like all sorts of things. So I just wanted to share that resource with you both that that book exists and there’s also when children Grieve is another book that they have. But yes, I think the more people that do this work, the better off society is no matter how you bring it about, no matter how you share it, whether it’s through photography or through workbooks or there’s so many resources now that, like you mentioned, before, did not exist. Twenty, thirty years ago. I know for me as a child griever nobody knew what to do. Nobody knew what to say, so nobody did anything. Nobody said anything. You know? And like you said, when children, you know, children can come in and out of their grief and they can compartmentalize, like, don’t assume that just because a child is not exhibiting sad or, you know, anger behavior or something. You know, like, I was a wall like, I was a wallflower. Like, I was very shy and kept to myself and some children just experience it differently or express it differently, like, you know, they say, you know, too, like, children that are exhibiting, like, anger or aggressive behavior. They’re just hurting that’s a child hurting, you know. And so we just we label them kids as bad kids or good kids, you know. And so I think we need to get away from those labels instead of asking what’s wrong with you, maybe what happened to you, you know? So thank you for the resources that you’ve created and have put out into the world and what you have to come. So what Can you share a little bit what you’re excited about right now?
Gracelyn: I actually just brought her our sample of the grief workbook for kids. So we’re working on that. But a lot of what we do is we bring care packages and books to kids and hospitals. So for pediatric, cancer boards, we bring them some of Melody’s resources and her children’s books and the workbook and the photography books. And so we’re getting those all into Spanish as well.
Victoria: Oh that’s nice
Gracelyn: So that’s kind of one of our, you know, big parts of our mission is to make these books accessible for people and to make this learn being in education and processing accessible for everyone, so especially in the LA area where we are. We like to donate all of these books to hospitals, so we’re working on those new books. Yeah.
Victoria Volk: I love that. And I’m also told or we had talked about it before that you’ll have discount code for the week after the episode airs? Yes.
Gracelyn: So the code will be grieving voices in all caps. And everyone will get 15% off when you use that code.
Victoria Volk: Off of a book. Right?
Gracelyn: Yes.
Victoria Volk: Yes. Okay.
Gracelyn: Then that’ll be through our website, which is lunapeakpublishing.com.
Victoria Volk: And I will put that information in the show notes as well as along with the dates. So we have that perfect. And anything else you would like to share?
Melody: Just that you’re never alone. You know, you walk past a grieve every single day and you don’t even know it.
Victoria Volk: That’s true. And you don’t know what people are physically dealing with, right? Because sickness and illness can doesn’t show up all the time with a bald head. Right?
Gracelyn: Right.
Victoria Volk: You know, compassion. Let’s give some compassion. And light in the world. We need it for sure. One more question. What has your grief taught you?
Melody: I mean, I think what I just said that you’re not alone, you know, finding other creepers. You know, it taught me that there is no right way to grieve.
Gracelyn: The same for me as well. And I think I figured out that sharing can be healing, whether you’re sharing with yourself. And acknowledging those feelings or sharing with a community or sharing it a book. It was through that ripple full effective healing that we figured out our path as a nonprofit, actually. It was through having cancer survivors share their story with another cancer survivor and to have that really quick bond with someone and to see kind of the healing happened there. In addition to putting their story in a book and elevating their voice and having that heal the readers. We like to call that the ripple effect of healing, and that’s kind of continued with the grief book as well. And it was through other people sharing their stories even with me as the editor that really helped me heal. So I’m really thankful to have discovered that. It’s okay to acknowledge this, and it’s okay to, you know, give some power back the grief experience even though people might not wanna talk about it. It’s okay to share and it’s okay to find those people and the community that understands you.
Victoria Volk: Very important. Thank you so much. I love this conversation. I like what you guys are doing and sharing with the world. And I appreciate your time, both of you for being here today. And remember, when you unleash your heart, you unleash your life. Much love.
Chronic Illness, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Pespective, Podcast |
Genesis Amaris Kemp | Caregiving, Covid, and Corporate Grief
SHOW NOTES SUMMARY:
Grief is cumulative, and it’s cumulatively negative. Every loss we experience stacks on top of those before it. For Genesis Amaris Kemp, attending funerals started becoming a regular occurrence. Add the loss of loved ones before the Covid pandemic (and during) to the loss of a job during the same timeframe, and it can be challenging to find solid footing. Additionally, learning, for the first time, how to advocate for a parent in the healthcare system posed its challenges during this same period.
Genesis’s father walked into a hospital with elevated blood sugar. Three days later, he was paralyzed from the waist down, which was later identified to have occurred from a stroke. Additionally, he endured several other complications during his hospital stay that later caused a quick decline in health and, soon after, his death.
Trying to be a caregiver during Covid proved to show the disparity and gaps in the healthcare system. In addition to the losses she endured during the pandemic, she also was laid off from her corporate job in oil and gas. Genesis shares her experience of being a young black woman in a predominantly older white demographic of employment, describing that experience and sharing how one conversation with the company VP, and the experience as a whole, was empowering, heartbreaking, and eye-opening all at the same time.
The Covid Pandemic showed us where we have a lot of work and repair to do within the healthcare system and how we live and work as a society. Genesis shares the lessons she learned during this timeframe and how she’s become impassioned in serving others with what she’s learned.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. Today my guest is Genesis Amaris Kemp and she is a visionary life coach, motivational speaker and author. She’s also a firecracker and a mindset hacker and a force to be reckoned with. I love that. Genesis is a woman that empowers others to speak up for themselves. Yes, it may be challenging, yes, it may hurt. But in the long run, she desires to encourage others to help those who may not have a voice. She’s a trailblazer, who wants others to live out their dreams, goals and visions. We all have been given an excellent purpose in life, it is up to us to walk it out and live, live victoriously. She is multifaceted and multi-dimensional, that cannot be contained in a box, or carp compartmentalized, I love that. Love that bio, that was fun to read. Thank you for so much for that.
Genesis Amaris Kemp 0:52
My pleasure, Victoria. And thank you so much for having me on your platform. It is attained. So our roles are reversed since I had you on my show.
Victoria Volk 1:04
Yeah. And I think we have a lot of the same values and like mission in life. And you know, you just want people to open up to their own potential, right, and to live into that potential. And I know what brings you to grieving voices is that you had a lot of loss in a short amount of time, and really not even that long ago. So how about we start there?
Genesis Amaris Kemp 1:26
Yeah, sure. So my grief journey started. If I go back to when I lost my little cousin, who was like, like a sister to me, we were only three years apart. That was 2015, she lost her battle with lupus, she was only 20 years old. And she had a tragic death where she fell off the toilet, the toilet and bashed her head into the sheet rock. And we’re not sure if it was the medication that they gave her that interacted with something else. So that was a hard death for me to deal with in 2015. Because Vanessa and I were super, super close. Then in November of 2020, my father passed suddenly, due to medical negligence. So eight days after having a surgical procedure, and how that how that journey started for me was my dad walked into the hospital just for his blood sugar levels being elevated in the middle of the pandemic. Three days later, we found out that my dad was paralyzed from the waist down, which was just alarming to us, because I’m like, How does someone walk into the hospital? And three days later, they’re paralyzed? So was it the wrong medication? Did my father have a stroke, I just going through the processes of elimination to kind of pinpoint the root cause analysis of what happened. So then that led me to really stepping up to be a patient advocate for my, for my dad, especially in a time where the hospitals were overpopulated with patients and understaffed with physicians and CNAs, doctors and etc. And it was unprecedent. So that that was very hard. There’s more things that happened there. But then the next of significant loss was my grandmother on my father’s side. So she passed nine months and five days from my dad. So it’s like, all the motions came back up again, because it was the same cemetery. She wanted to be buried at the feet of my dad, and just going through all of that created some triggers in me because it was like I was reliving it for again, and with her, it was like she had a slow death, because she fell in the bathroom, similar to how my little cousin had fell. But my aunt was able to turn her over. So whenever my aunt told me that all the emotions of when Vanessa pass came rushing back, and it was hard to compose myself. And since we we currently, we currently live in Texas, and the hospitals were once again over staffed with patients, so the ambulance when they came to came to the house, they pretty much told my aunt that the hospitals were on Drive by status, meaning that there may not be be a room or a bed available. So they pretty much you know, try to help my grandmother, but they said there was nothing else that that they could do. So they pretty much left her lying on the middle of my aunt’s floor, where she ended up passing away slowly because they couldn’t take her to the hospital. So that was a horrible experience and another form of grief. Then the third incident that happened it in regards to lose a loved one was when my grandmother on my mother’s side pass after we got back from the Caribbean, she was 99 years old. And we had just had like a amazing Christmas, we went there, it was the first time, my husband got to meet some of my family down in the Caribbean that was not able to come when we come over when we got married dude, like visas and different stuff. So that was a loss there. And then before that, just backing up the other loss that I had in between all of this was losing my job from corporate America. So I got laid off from oil and gas, along with 19 and 1900 other people in the middle of the pandemic.
Victoria Volk 5:47
That is a lot. That’s, you know, when I say joke about it, it’s not even a joke. But you know, you hate to joke, but it’s kind of, you know, when you look back, it’s like, Wow, COVID really does ruin everything. You know, that’s what I say COVID ruins everything. That’s a lot. And I just want to extend my heart in thoughts and prayers to you and your family. Because that really wasn’t that long ago. And so I want to start or go back to with your father, did you ever find out? What caused his death? Specifically? Like, did he have an emergency, like a medical event? Or do you did you ever find out?
Genesis Amaris Kemp 6:33
Yeah, so we found out bits and pieces. So for the paralysis, we figured out that my dad had did have a stroke, even though one facility told me that he did not have a stroke. So they pretty much lied. But it wasn’t until we got to read rehab that they said, Oh, he has all the signs and characteristics of a stroke. So had they caught it sooner, they could have you know, did preventative measures to help, you know, rehabilitate him faster, or we could have got him to a nerve center, then that led my dad to get a bed sores or sacral wound, which ended up becoming infected, which he got sepsis. So in order to get rid of sepsis, you have to go through a lot of blood transfusions and different stuff like that. That also led him to having emergency neck surgery. And then from emergency neck surgery. There was like so many other things that you know, happened there that I don’t want to be long winded. So it was a hard process. And then it got to the point where my dad just felt like he was not getting adequate care from going from one hospital to rehab them back to the hospital because he got worse in the rehab, where his stomach began to swell and distend. And it was just so hard. Like you could just feel my father’s stomach it felt like rock hard to not be able to see family because the hospital’s been on lockdown. Because of the the COVID numbers rising so high. So they stopped visitors. And then my father came home. So I tried to do the best I could to be like Home Health along with bringing in the appropriate disciplines like OT, occupational therapy, PT, physical therapy, having a nurse come in having a person come in to clean and stuff. And that’s a lot of resources. And you know, insurance only covers so much so we didn’t have full time care. So when they weren’t there, it was all hands on deck, which hurt either myself, my mother and then whenever my husband wasn’t working my husband, but it was very hard and strenuous. And I tell people, my hands go up to caregivers, because people don’t realize how much a caregiver goes through.
Victoria Volk 8:46
Just what was that timeframe from start to when your father passed away? Like how long did this ride out?
Genesis Amaris Kemp 8:56
So May to November? So not that long?
Victoria Volk 9:00
But even five months can feel like five years, right? Yeah. I just had a conversation that I recorded with a patient advocate, actually, she had her own personal experiences with her husband. And it, it really pushed her forward to now be a patient advocate. For she had shared a statistic something to the effect of, well over 200,000 deaths occur every year to medical negligence.
Genesis Amaris Kemp 9:32
I would love to talk to her so yeah, yeah,
Victoria Volk 9:35
I can connect you for sure. And given that, you know, I want to discuss this because I think it really is really important. What do you feel like? Personally in your experience? Do you feel like race played a role in your father not what do you feel like COVID was the hierarchy Do you have that? Or do you feel like that race did play a role in that, too,
Genesis Amaris Kemp 10:04
I think it was a little bit of both one definitely COVID. Because it was a time that no one really projected. And then also, the race factor also played a factor in that as well, because of quality of care that someone who is a person of color versus someone who’s not a person of color, and then you can even break down the demographics a little further between a person who has insurance and a person who does not have insurance, because there’s different tiers. And so when my dad was a person of color, he did have insurance, but he also was in South American descent. So I think all of that played into a factor. And then another thing that one of the nurses said, to my father was like, Oh, you’re surely gonna die if you don’t comply? Because my dad will question like certain treatment. And I feel like as a patient, you have a right to question what treatments are being administered to you. If you feel like it does not agree with your body that is your right as a patient, and for that nurse to have said that, I wish I was there that day, because I certainly would have would have reported her.
Victoria Volk 11:10
And the other layer of that too. And thank you for sharing that I just because as an end of life doula that was very much a part of our conversation and training. And part of the training was that the disparity of care at end of life for palliative care for access, for people have color or in different regions or areas of the country. And so that was a huge part of our training. As an end of life doula. And so I feel like that is an important aspect of healthcare, too, that often doesn’t get talked about enough. Is there anything else about that, that you would like to share? I want to give you a chance to,
Genesis Amaris Kemp 11:50
yeah, I feel like whenever you go into a certain practice, you need to be open minded, that people are coming from various areas and backgrounds. And you need to be sensitive of their needs. Because even though you are a physician, you don’t always have all the answers. And you’re not the end all be all, and you should really see it as a partnership with your patient and actively listen, and it’s a two way street. So you can make sure that that patient has the best care, because if the shoe was on the other foot, and that was your loved one, how would you like your loved one or yourself to be treated?
Victoria Volk 12:30
Now it brings to mind something that I think a job description would be excellent for hospitals would be, you know, an objective person, you know, so like in and at end of life and palliative care, you have the end of life doula that is there on behalf of the patient, first of all, number one, but also for the family. They’re, they’re the bridge between the healthcare staff, the patient and the family. And so they can answer questions they can share with the family, what to expect when their loved one is dying. They can be the advocate for the patient, things like that. And I’m thinking what an amazing thing that that would be for someone for families in hospitals who are going through long term issues, or when their loved ones in the hospital for a long period of time to have that go to person right to be your advocate, because I don’t think we really, that’s really not a thing, is it?
Genesis Amaris Kemp 13:24
No, it’s not. And people don’t realize that the hospitals do have patient advocates, but they’re not a lot. And just like they have social workers, and they have case managers and etc. But if a patient does not know what the resources are, while they are in hospital care, then that also prolongs the help that they’re that they’re given. Like, for example, I just found out that there is a music therapy person at the cantor facility that my cousin is currently undergoing her treatment. And I had no idea that was a thing. But unless she would have told me or the person came around, I wouldn’t have known just like they have a chaplain, they have so many different resources. And I think that we have to do a better job educating the patients, but also the hospital to bridge the gap and just close those gaps with letting them know these are the things that you’re entitled to. And it shouldn’t always be a numbers game, or profit over people. We need to get back to humanity and have compassion, have empathy, and realize that we’re all human beings, and everyday is not going to be the same. But remember why you signed up to do the job that you did?
Victoria Volk 14:42
Yeah, and I think questioning should never be, you should never be shamed for questioning. It’s, you know your body better than anybody else. And that’s, you know, yeah, my son had an incident just a few months, several months back and I was a questioner, probably As annoying as all get out, but you know, you almost you have to be right you have to be because no one’s gonna care more about you than you or your loved one. Right? So, yeah, it is up to us to ensure that’s the thing like with COVID, too, and then they they created this barrier, there was this barrier there where you couldn’t be the advocate, you couldn’t even be there. And so you’re sitting at home wondering, Is he getting the care that he needs? And how did you deal with that?
Genesis Amaris Kemp 15:29
That part was hard. So we sent a tablet with my dad, so we can at least have video calls so we could see him and stuff, especially since we knew that he was suffering from that paralysis from the waist down. And there were times where like, I would be on the phone with him and he was hitting the nurse bell. And it took over 30 minutes for a nurse to come to his room. And like I sat there waited on the phone. And then when I called the nurse desk, they said, Oh, we were just in there. And that literally like if I could turn red Victoria. Or if steam or smoke could come out of my nose and ears like a dragon, you could just picture how bad I was because like, one of my pet peeves is lying. Don’t say you were just in the room when I know I was on the phone. So that was just one incident. And then another thing that happened out of all this stuff is I lost another dear friend. So my best friend’s dad ended up passing after he had surgery to like a few hours. And then my friend was misdiagnosed. And her organs ended up shutting down only to find out that she had lupus. So in the height of the pandemic, they put her in a medically induced coma for four days. And it was just horrendous. So all of these things have happened, along with me losing loved ones. And then so just me having to be a patient advocate and help with other people was also mentally taxing. And the fact that you couldn’t get it get inside some facilities was very alarming because certain policies were not being adhered to, because of the fact that the hospital was short of staff.
Victoria Volk 17:17
Well, that opens them up to liability and negligence, right? Yeah. I didn’t realize that lupus could be deadly like that. And you’ve lost two people, right? It was.
Genesis Amaris Kemp 17:30
So one was my cousin. And then I almost lost my friend who was just diagnosed with lupus, she ended up making it out of the medically induced coma. Then she had a stroke, similar to my dad. So a lot of the symptoms that she had actually mirrored what my dad had. So that was another trigger for me. And but the good thing about her is when she went to a rehab, the rehab facility was honest with them, and said, there’s nothing that we can do to help you. But we can refer you to a neuro center. And when she went to that neuro center, she had to learn how to walk again, she had to learn how to use her arms again. And that was the best thing. And I said, Man, looking back, I wish I would have known about this neuroscience neuro science center that worked on neurology and stroke patients. So I could put my dad there versus the damn facility that I put my dad in for rehab, because it was like everything was like Rush gogogo. Because whenever the insurance is paying, they only cover a certain amount of days in a hospital a certain amount of days in rehab, certain amount of days, and long term acute care, and etc. And they like are rushing, you don’t have enough time to do all your research. But if they would have given me like a week like, hey, we need to move that. And based on insurance, I would have, you know, been better prepared. And yes, my, my husband even got on me because he was getting frustrated. He’s like you should have been researching this. I had no idea it was going to come to the point that I needed to hurry up and move him to another facility and I and you don’t always know what insurance is going to cover. Because sometimes they change things on 30 days basis.
Victoria Volk 19:10
Well, I can’t imagine how much time you spent on hold on the phone. Yeah, dealing with all the different departments and agencies and insurance and yeah, yeah, I can’t even imagine. So how did you What got you through?
Genesis Amaris Kemp 19:28
So after I lost my dad in November of 2020, what really helped me was podcasting. I just opened my phone, and I started talking to myself in the phone, because I got so freakin tired of people saying, Oh, I know how you feel. And I’m like, do you have you lost a parent because both of your parents are very well been alive. Or, um, you know, he’s in a better place, which I’m like, Okay, I understand that. For the spiritual people sometimes come from a religious and spiritual background. Oh, well, the Lord giveth and the Lord take it away. You know, the Lord would never put it more on us than we can bear Genesis. And you know, we all have to die some day, or just whatever. Instead of like asking, you’re saying, I don’t know how you feel. But is there anything that I could do for you, versus pre empting your assumptions and judgments onto me, knowing what I was dealing with, because you don’t know the triggers? You don’t know. Like other things that I went through, you don’t know that my dad and I was super, super close. We had a good relationship. And there’s oftentimes people don’t have a relationship with their father or they don’t even know their father. But I tell people, my dad, we were like, you know, Ben and Jerry, we were like two peas in a pod. That was like my person that like I did, though, to talk about anything over over my mom, even though him and my mom were mayor for 30 years. And he was also my Road Dog. Because times I would want to go to the mall, my husband hates being in the mall. For hours or days, I would just call my dad and he would go with me. Or like, if I want to go to the grocery store, if you could just come along and push the car. It helped me load up the car with the grocery, and just different stuff, and just not to have him there. What was hard, and then when I found out that I was expecting to know that he was a great grandfather to like all of my nieces and nephews, but he will never get the ability to spend time with my child, which him and my mother live with my husband and I. So we we all live together. Like I was like this would be the first one in the house. So how cool would that be? For Dad and Mom to be here? Like? Those are our babysitter’s right there.
Victoria Volk 21:49
What was your dad? What’s your dad’s name? Earl? Your face just lit up a PIN people can’t see this unless they watched the video but your face just lit up as we talked about? What was what are some of the greatest lessons that you that your father passed on to you and that your grandmother shared with you too?
Genesis Amaris Kemp 22:07
So one always know who you are. He he always instilled like scriptures in me especially whenever I have like bad days or I you know, started to question God or like moved away from from God, like my dad was always there. Another thing was always follow your dreams and passion. So like, before I went to real school, I got a real degree like my dad paid for me to go to acting school, which I always wanted to do like, something like that. But I actually got selected for I MTA LA, which is the international model talent agency for Los Angeles where you could go audition, and in front of all the big names of who’s who. But then my mom, she’s very conservative, and my mom’s Caribbean. So she’s like, Oh, no, if they want you like they will pay for you to go there. We’re not spending five grand like that. But what you can do is go get a real degree like your brother, and my brothers are engineers. So like, my mom was very, like school focused and driven. And my dad was always like, oh, yeah, if you want to do that, like go after it. So that’s one thing I miss about my dad, he like he would talk to anybody who would give you the shirt, off your off your back. And since we are a blended and multicultural family, like my dad did not necessarily see color, because his mom was half white, half black. And he was just so open, like to different cultures and people and very loving. And that was a good thing that my dad is still because now we live in a society where everyone is so polarized, whether it’s religion, whether it’s sexual orientation, whether it’s race, or whatever. And I think if we get back to realizing that there’s more commonalities that we have, versus highlighting the differences, we would be better as society. So those are really good values that my dad instilled. And then my grandmother, her and I did not get close until she came back to attend my husband and I’s wedding. So just a humbling experience was the fact that, you know, my grandmother needed help taking a shower. So I helped bathe her one day, and gosh, I have to bake grandma. So that was like, very, like humbling. And she was very sassy. And then, you know, I found out that she really likes to play dominoes. So her and my husband got to play dominoes. So that was cool. My she was a great baker. She loves crossword puzzles, and that’s something I like to do. So she was doing her crossword puzzles and then I started doing them. And when she passed on, like I got all the crossword puzzles that she had left. From my aunt’s house. I was like I got dibs on great on grandma’s house. puzzles. So that was cool with my dad’s mom. And then, with my mom’s mom, the beauty of that was the fact that she was 99. And when we went there to the Caribbean, like she knew that I was expecting before I can even tell her. So it was like a cool bonding experience that we had. So she got to give me her blessing, and speak life over my, my, my baby, and just all of those things. And then she really, she really got to engage with like my husband. And so them to like, started to build a bond and crack jokes. So it was like, kind of kind of cool to see that. And I was like, Oh my gosh, like, this is just amazing. So each one of them have like, amazing things that are remnants that they left
Victoria Volk 25:47
Their voice you just lit up again. You can see have so much love for your family. And as we all do, but you just saw you lit up talking about them. I do wonder, has there been grief? Or was there grief about that potential dream?
Genesis Amaris Kemp 25:47
Oh, oh, yeah, cuz I told my, my mom all the time, even now, I could have been on the big screens with Tyler Perry, I could have had my dream car by now. My black Lambo sitting on black with my blue neon lights. Just or just like the pipe dreams are just different stuff like that, because that is like my personality, I love talking with people engaging in different conversations. And just when you could take yourself out of your own reality and submerge it in something else, to really allow your creative, creative juices to flow. I think that’s amazing. And I have a lot of love for like the producers, the writers, the illustrators, and etc. Because there’s so many things that go involved in in that, that people from the outside looking in, don’t realize. And I was like, you know, at the end of the day there there are people just like we are even though they have like, you know, the nice, the nice house, a nice car, and etc. But like I was like money doesn’t make you but money does act as a vehicle to get you what you want. So you could like give back to society, because there’s so many charities that I want to partner with, like lupus and I want to partner more with the cancer center and find find cures for diet for diabetes and different ways to pair like a nutritionist with every like diabetic person so they could can reverse diabetes, and just different stuff like that I have so many goals and dreams. But like without having all the resources, you’re not able to check those off your list just yet I say just yet, because I do believe in manifestation and the law of attraction.
Victoria Volk 27:47
Because you brought up, you know, career and dreams and all of if you can share that job loss. Was that like a blessing in disguise?
Genesis Amaris Kemp 27:57
Looking back, I think it was because what a lot of people don’t know is that we tried for so long to conceive. And it just wasn’t, wasn’t happening. And I’m not sure if if if it was because my job was very high stress, or I was just very unhappy there. Especially whenever I knew that I was being underpaid under value. And I think didn’t did not change for me until I spoke up after the whole Black Lives Matter incident when I was in the Vice President’s meeting, and that’s where I got a $20,000 salary increase one week later, good for you. And I got a bump in my classification level from 15 to 22. But why did it have to take me speaking up about my stories with personal racism and professional racism. And it was just, it was just heart wrenching. And I think what really gave me the option was knowing the fact that I had my book out on the market and I was doing work in the diversity, equity, inclusion, and belonging space, outside of you know, my day to day job in corporate but I feel like when you come from a good old boys club that male dominated, older, Caucasian white men, like you have to work twice as hard to be seen and heard without doing things that compromises your morals and values because sometimes people are just wanting to get ahead so bad like they do things that are unscrupulous or things that would demean who they are
Victoria Volk 29:31
Yeah, yes all of it everything you shared good for you and I imagine that that’s like how has that played in your those experiences played into the work you’re doing now?
Genesis Amaris Kemp 29:42
Oh, they’ve played into it drastically because being laid off has now allowed me the ability to like do my podcasts connect with other people? Yes, it it sucks not having the dual income that I had with my husband is sucks not having, you know the perks of staying at nice hotels are having a limo pick you up to take you to the airport for business travel, or corporate Amex card like those things suck. But I was like when you focus on the vanity, you also lose a sense of who you are by you allowing money to buy you to the point where you’re hushing yourself because the money is so good. So it was a wake up call. And it helped me grow more personally, as well as professionally, to realize that, you know, you could have all the money in the world and still be unhappy. You could have the good salary and live in the nice neighborhood, but still feel feel unhappy if you’re not fully fulfilled in yourself. And if you feel like you’re just going through the motions, because if that’s the case, and you’re just living, you’re not fully existing and enjoying life.
Victoria Volk 30:46
Would you say that that’s what your grief has taught you? Yeah,
Genesis Amaris Kemp 30:49
I would definitely say, grief has taught me that it’s a hell of a journey and a ride. And there are some days that I have to take a mental health day where I feel like certain things will happen where I feel triggered, like right now, I’m funeral out. Like, I don’t want to go to any more funerals, because it’s been a lot. I am tired of seeing so many people suffer from the pandemic or lose their lives, because since I’ve been doing the podcast, other people have shared with me their stories, because I’ve been open about sharing the loss of my dad, and what he went through, and they’re like, oh, my gosh, I could resonate with that. And it’s heart wrenching, because they’re not just African Americans, or people from all walks of life that it’s happened to. Another thing that just bothers me to put the fact right now is, I’m not sure if it’s happening, you’re safe, but the abortion ban law, because you never know what a woman is going through, you don’t know, if she got her test results back and found out that, you know, there’s something wrong with the chromosomes of her baby, and her baby may not make it. So abortion would be a way to help herself and help her child. You don’t know if that woman was raped, you don’t know if you know that woman is in a abusive relationship. And she was forced or coerced into something that you know, she she’s not in a good mental state to be a mother or whatnot. So that that’s heart wrenching. And you know, there are people out here who are, you know, privileged to have a baby and just have a baby. And then they don’t value that they create it life and they just get rid of it versus bringing that baby to full term and giving that baby up for adoption to a loving home. There’s so many things right now, that just agitates the hell out of me. And I feel like having a podcast, I could talk about what I want to talk about what I want to talk about it and just bring awareness on the various subjects while cutting through the fluff because we have so much fluff in social media, we have fluff on TV. And I think people want to hear real, raw, transparent conversations, to know that it’s okay to not be okay. It’s okay to take a mental health day without someone thinking that you’re crazy or you need to be committed, or whatever, it’s okay to pull back the negative stigmas. It’s okay to stand up for what you believe in and be unapologetically you.
Victoria Volk 33:17
There’s so much in what you shared. It’s an it’s also people can believe and have the right to believe what they believe. And it doesn’t make it wrong. And it doesn’t make it it’s just different. I don’t know if this is true, because I haven’t read the whole thing. Or maybe you can clarify it for me on the abortion law there supposedly something that says that women can abort if they don’t like the sex of the baby, that that’s included in that.
Genesis Amaris Kemp 33:44
I have not seen that. But that would be alarming. If that was was our case, because that’s not a good reason to abort the baby. If you don’t like the sex of the baby. As long as your baby is healthy, you should continue to go on with that baby. But then I don’t know the context and pretence of what that woman may be struggling with. Because pregnancy can be a very complicated process. There’s I like to tell people, there’s the good, the bad and the ugly. And I talked about this recently with the guests. I was like, people see the glamorous side of pregnancy, but they don’t see like your left boob may just start leaking for no apparent reason one day, while you’re in your pregnancy, your butt may hurt from sitting down for so long. Some women have the varicose veins that just pop out they’re hideous or the stretch marks or whatever. And I feel like you need to have those conversations. But going back to that clause, I’m definitely going to have to look that up. Because I would just call BS on that one.
Victoria Volk 34:48
Well, that’s the thing. It’s like I think some laws they could be better written right? And I think if if people if the sides could come together and really talk about what they’re paying asking, right like, Does this seem extreme? Or does you know what I mean? Like, yeah, find a common ground and an understanding of that both sides can agree to but back to you, I want to thank you for your time today. And I want to give you an opportunity to share where people can find you, if they want to hear more from you.
Genesis Amaris Kemp 35:20
So you can head on over to my website, which is genesisamariskemp.net. And I’m gonna spell it. So it’s a G E, N, E, S, I S, Amaris A M, A, R, I, S, K, E, N, P.net. So have a link to my Instagram, my Facebook, you’ll get a free chapter of my book, which is the first chapter of chocolate drop in corporate America, from the pit to the palace. And for those of you on the video, I will hold up what the book looks like. So that is the cover of the book there. So you see that it really shows shows that diversity, that equity and inclusion on the book, there’s a world in the background, letting people know that this happens worldwide, not just in America. And I’m also giving away two other freebies on my site, which is under the features and merchandise tab, which one is a health assessment because I truly believe in order to have longevity, it starts with nutrition and overall wellness and exercise. So there is a health assessment there so you can analyze where you are currently, and what vehicles you need to use to get to where you want to be. And then there is a free product. It’s the Kiani sunrise, which is the super fruits and super nutrient all in one pack. So definitely give you that energy. And just to boost you up especially if you don’t like certain veggie vegetables or certain fruits, you’ll have everything that you need in one packet. And it’s a quick drink, you could drink on the go. Unlike the garbage that’s on the market, like a monster a five hour energy that boosts you up like a rocket but then you come crashing down. So those are three freebies that I’m giving. And then I also want to encourage people to check out some of the other things that I have going on which all info can be found out on my website via the different tabs.
Victoria Volk 37:25
And what’s your podcast called?
Genesis Amaris Kemp 37:26
My podcast is called Gems G, E, M, S with Genesis Amaris Kemp, and it’s called gems because we all have incredible gems to share. While we are here on earth, and the core pillars are to educate, inspire and motivate, plus intersect the dots between diversity, equity, inclusion and belonging.
Victoria Volk 37:52
I love it. I love your message to so thank you so much for being here. And remember, when you unleash your heart you unleash your life. Much love.
Chronic Illness, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Widowhood |
Betsy Smith | The Bulldog Advocate & Caregiver
SHOW NOTES SUMMARY:
According to Johns Hopkins, 240,000 medical error deaths occur every year. Betsy learned that when it comes to the healthcare system and being a caregiver, becoming informed and a fierce advocate is the only option.
Betsy learned real-life experience about medical advocacy while her husband survived prostate cancer, only to be diagnosed with bone marrow cancer five years later. Four years after his bone marrow cancer diagnosis, he passed away.
Within six months of his passing, she went against the advice generally given to widows not to make any big decisions the first year and sold her home and moved. But her move wasn’t to start over or escape; rather, she was moving toward support and people who knew her. In her words, she moved to where her “colonoscopy friends” were.
Once she was surrounded by everything familiar, the loss of her husband hit hard, and she sought weekly support from a grief therapist. Through that support, she navigated the devastating loss of her husband, Jack.
What followed was a strong desire to write a book that could offer support to other caregivers navigating the healthcare system. Through her writing, she shares with others the lessons she learned, caregiver tips, and practical advice for becoming the best advocate you can be for your loved one.
Not everyone is assertive or forward in their approach to situations. And Betsy learned that southern charm and politeness don’t move others to action. She has made it her mission to help others find their own inner bulldog. Because, when it comes to those you love, or yourself, there will never be anyone who cares more than you.
RESOURCES:
CONNECT:
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NEED HELP?
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- 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.
Are you enjoying the podcast? Check out my bi-weekly newsletter, The Unleashed Letters.
CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. Today, my guest is E L. Betsy Smith. And she’s going to be sharing her grieving voice today on the podcast. And I’m so happy to have you here. Thank you so much for being my guest today.
Betsy Smith 0:17
Thank you. I appreciate the invitation Victoria, and I am a recent widow read not so recent four years ago, my, my husband was diagnosed with bone marrow cancer in 2014. And he died in 2018. And we were in North Carolina at the time. And as a widow, one of the first things they tell you is don’t make any major decisions. For the first year. Well, I had sold a house bought a house moved within six months. So and it was exactly the right thing for me wouldn’t be the right thing for everybody. So during my husband’s illness, I realized that there were a lot of people that were very intimidated by the health care system, and the professionals. And it became my passion and my purpose, to spread the word about advocacy, as well as caregiving. My first career was with a huge community college, in Pensacola, Florida. I was the dean, I was a provost, I was the vice president, then I opened my own consulting business. And my business is the overlying theme is is advocacy. The leaders that advocate patient advocacy, of course, and self advocacy are women in the workforce.
Victoria Volk 1:43
So it’s almost as if that you were built for this work?
Betsy Smith 1:47
Yes, I think I can remember, I think or maybe it’s family folklore. When my mother brought my baby sister home, she’s five years younger than me. And my memory says My mother said to me, Betsy, you’re the big sister. And you’ve got to take care of Molly now. And I took that very seriously. My five year younger sister thinks I was just bossy. But that’s not true. I was sort of advocate.
Victoria Volk 2:13
So did you have a lot of grief experiences in your childhood that prepared you for this experience that you’ve had in the last four years?
Betsy Smith 2:22
I did not, of course, people lived and died in my family, aunts and uncles and grandparents. And my mother and father were my mother was in her late 60s. My father was 83 when he died. So I went through two divorces. But that’s not really grief. That’s kind of annoying. Yes.
Victoria Volk 2:43
I’m curious why you think that’s not grief? Or, or how it how you view it as not being grief for you. Because even in less than loving relationships, or loving relationships, there’s conflict there, right? And so grief isn’t necessarily sadness, or depression or about loss of a loving relationship. It can be anger and frustration and disappointment and all of those other you know, grief is so much more than that. So I’m, I’m personally curious, your view of that, and how those divorces work grief.
Betsy Smith 3:23
I would not have said that if I hadn’t just lived through the death of that’s different in divorce. somebody chooses. And it may not be you but somebody makes the choice. And, and I’ve always been a bit. I was a child of the 60s have always been very independent. And yes, the two divorces were game changers. Absolutely. But compared to grieving over the death of the spouse, it for me pales in comparison.
Victoria Volk 4:07
I totally Yeah, I totally get where you’re coming from I for people listening, you know, because the premise of my message in what I share with people is that grief isn’t just about loss. No, you’re right. It’s a lot of things. Now, there’s I mean, you can have even moving right when your husband passed away and then having to move and loss of the neighbors you had and the co workers and colleagues and things.
Betsy Smith 4:33
Right, right. And I relocated back to Pensacola, Florida, where we live for 20 years before we moved up to North Carolina, so I came back to a loving environment. I came back to France who’ve known me for 30 years. I came back to a place I knew well. And that we had some wonderful time, Stan,
Victoria Volk 4:58
Do you think subcon Interestingly, it was to seek out support, and maybe security and safety in your environment. Yeah
Betsy Smith 4:58
It absolutely was. And as I jokingly say, I have colonoscopy friends down here. I have friends, I can call up and say, have a colonoscopy scheduled next week. Can you drive me and spin for hours with me?
Victoria Volk 5:22
I have one of those Fred’s. I have to have one every five years. So I yeah, I totally get you so. Well, I’m curious about that, too, did you you obviously must have had a scare of some sort when it comes to polyps or something.
Betsy Smith 5:41
My My father died of colon cancer when he was 83. Okay. And because of that history, as I got closer to 83, they shortened the time of colonoscopy. He’s never had a bad report. I mean, a polyp or two, but I’ve never had any bad reports. or scary reports.
Victoria Volk 6:00
My father passed away at 44.
Victoria Volk 6:04
Oh, my colon cancer. Yeah, I
Victoria Volk 6:06
Had goodness. I had a polyp removed when I was 33, 32. Yeah. 32. I think so. Yeah. Probably five years since then. So yeah. So with your, how long were you married to your husband? When you found out that you are when he was diagnosed? How long had you been married?
Betsy Smith 6:27
We totally were together. 22 years. We were married 14. So we’ve been married about 11 years when he was diagnosed?
Victoria Volk 6:40
Did he have a family history? Or was it just tiny? Okay,
Betsy Smith 6:44
His mother was a heavy smoker. She got lung cancer. And long before me, he and I met late in life, his father died of some form of cancer. And Jack had already survived prostate cancer, had had radiation and came through that fine. And then five years later.
Victoria Volk 7:10
So you’ve actually had previous experience with the health care system. Before his second diagnosis? Yeah.
Betsy Smith 7:17
And Victoria. In my tenure at the community college, I was Provost of the health related campus. And we had nursing and we had physical therapy assisting and we had dental assisting, and we had radiology. So and I was sent out there. But not because I have a health background, I was sent out there, because I am a community builder. And the President wanted that campus to become more of the community. And, you know, I used to take hospital CEOs to lunch and ask him for a million dollars for a new medical building on the campus so that those five years gave me lots of information about healthcare and doctors and CEOs and how they think and how that whole system works. Now, that’s been 20 years ago. So things have changed significantly.
Victoria Volk 8:14
What was the one thing or maybe a few things that you disliked or that you thought could be better or that prompted you really to write your book, and to be become this advocate for healthcare?
Betsy Smith 8:30
According to Johns Hopkins, there are 240,000 medical error deaths a year, the first incident that happened that made me realize my husband was in a clinical trial. We were at the hospital every day. Fortunately, it wasn’t very far away from us and North Carolina. And one day, they said we’re going to do to test today, we’re going to do one appear on this floor. And then when we finish in exactly 30 minutes, they have to start a second one down on the second floor. And the nurse said, you check out I’ll take him down there. So I checked it out. And it took about 30 minutes and I went down to the appropriate writing waiting room and looked around. Now we’re at 30 minutes. And there was Jack in a wheelchair in a corner. asleep and I shriek Why is my husband still out here? And a tech came out? He said, Can I help you? And I said yes. He was supposed to bed, whatever it was started five minutes ago. And why isn’t he in there? And the tech said we didn’t know he was here. And that’s when I realized I couldn’t trust the health care system to take care of my husband.
Victoria Volk 9:56
And what was the experience like throughout those four years?
Betsy Smith 10:00
We had some good experiences and we had some horrible experiences. At one time when he was in the hospital, his name tag, got switched with another person’s name tag on the blood vial.
Victoria Volk 10:14
Oh, my
Betsy Smith 10:16
Thank God, the nurse that was checking his count at six o’clock in the morning realized something was very wrong. And she went screaming down the hall in hospital. And then there were seven people in the room, the phlebotomy department and vice president of quality control. And they assured me that they had found the problem that it would never happen again. And I wrote a memo, I wrote several members to the hospital CEO. But this one started as a former provost of a health related campus for over five years. I understand mistakes happen. But this is unacceptable. Another time, we were 1000s of miles away from North Carolina, which we should not have been but we work because he wanted to get and he was hospitalized. And I wanted to get him back in North Carolina. And so I started a tirade to get him released. And one hospitalist told me, I’ll release him to go back to North Carolina by ambulance. And I said, you have got to be kidding me. We’re not putting this man in an ambulance for 27 hours to get him back to North Carolina. And in the back of my mind, I knew if anything happened, they would stop and he would be admitted to another hospital. And a week later, the same hospitals came in I said, I’m gonna release them to fly commercially. I said, No. What do you think and he can hardly walk. His immune system he has now now we’re not getting on a commercial flight. And then I live to see the hospital CEO. And the hospital paid to add Jack Lear jet flown in a Learjet ambulance back to North Carolina. Those are big things. And Victoria, I know not everybody has my personality. Not everybody grew up in Texas. Not everybody was provost of a health related campus. But I wrote the book, to let family members and friends understand. You’re not powerless. ask the hard questions. If you don’t understand what the doctor is telling you. Ask them to use language you can understand. Don’t be afraid to ask for a second opinion. Keep up with the meds that they’re being given, and doctors and nurses and everybody else in the healthcare system and human beings. And we make mistakes, and they get tired. And they’re overworked. And they have lots of patients. We have one.
Victoria Volk 12:54
Yeah, I think we give a lot of power away, especially as the family. Like you said, we it’s almost as if I think what happens in that and tell me if you think I’m wrong or share your input as well. But I’ve had personal experiences, as recent data’s towards the end of this last year where my son was in and out of the hospital for something that’s really rare. And one physician saying one thing, and everyone else is saying something different. And here’s me like, kind of being the Bulldog, right? Yes, exactly. And annoying the piss out of everybody around me, I’m sure of it. But you know, he’s my son, right? Yeah, I’m gonna be his advocate. So but what happens is it I think just like as we medicalize dying, you know, if someone is on hospice, or someone is, has cancer, but they’re in the hospital, not on hospice, which is tirely different situation male, completely different dynamic. Please get on hospice, if you can. Yeah, that’s, that’s what I would say. We just leave the whole process to people we think and believe no better, who know that individual better than we do. Right. So what are your insights, say? A few things that you would like to share with listeners to keep in mind if they have a loved one who is has a terminal illness?
Betsy Smith 14:29
Or even a just a long term illness? Correct? Yes. And one is, always have somebody with your patient, always take note, copious note. And if you can’t have somebody with you who can or ask the doctor if you can record it, that that would happen, but you could. I asked projects medical records every day he was in the hospital so that I can film. I just, I don’t know why I thought that was important. But I felt that was important. Because he was in and out of hospitals so much for such a long time. I got I, we both of us got to know the custodians, the food service people, the student nurses, the residents. Because those relationships make you part of that family. And they know things other people might not. And when he was in the hospital for three weeks, and I’ve valet park for three weeks, the valets and I became buddies. And when he died, and I went downstairs to get my car, and of course they could tell it had happened in this one young man said, may I pray with you? It still brings tears to my eyes. But that meant a lot to me. A Grief therapist asked me shortly after Jack died, was I afraid when he was sick? And I said, No, I was pissed. And she said, pissed, it was at him. I was just pissed. Now I can see that’s how I was manifesting my grief. I just kept hammering, just kept camera and just kept hammering. And until I got relocated, and it really hit me that I went to a grief therapist weekly, to sort through that and, and grief is interesting. I perceive it as yes, they say it’s like a wave of give you I can viscerally feel layers lifted from me, not always at the same place at the same time, but I could feel it off my shoulders for months. And I just felt lighter and lighter and more willing to go on. And eager to write this book to share with others to as, as my grief therapist said, I don’t know what this looks like. But your new work is advocacy.
Victoria Volk 17:20
So what would you say? changed? How you change like the version 2.0 of you, versus who you were before? You think this has softened you a little?
Betsy Smith 17:35
No? No? No. As a matter of fact, I have a dear friend who’s also a coach like I am and she said, I perceive you lead from your head, not your heart. I said my heart’s worn out. Out, I’ll get back to that. But some people would, what every human being reacts differently to every single thing that happens. So what we can do is tell our story through our lens through our filter and, and start the conversation. get the conversation started.
Victoria Volk 18:14
You know, even though people I mean from what you shared this tough exterior, right? This, you know, Bulldog mentality, like just getting in there and getting to work. Do you feel like this grief though, has cracked you open? In a way that nothing else in your life had?
Betsy Smith 18:37
Absolutely. Absolutely.
Victoria Volk 18:41
Do you feel like you see yourself differently, and others maybe differently with this lens, maybe a lens of compassion,
Betsy Smith 18:53
Compassion, empathy. One of my purposes is to give family members and friends the courage and confidence to be that advocate. And your idea of courage and confidence is probably different than my idea of courage and confidence. I have a story in in the book from a retired hospice chaplain, a female retired hospice chaplain. And we were swapping stories and I’m telling her how I did this and how I did that. And she was telling me how she gently and persuaded people to do this and that and it was a great conversation because that worked for her. And I tried that. I’m a southern girl. I know how to be nice, but there comes a time when nice isn’t working. So you get insistent. You get passionate. You get assertive, and sometimes across the line over into aggression. serve. And I love your term Bulldog. That that’s what an advocate is. Whether you’re advocating for a political policy, whether you’re advocating to get a new neighborhood built a new park bill, it, you got to stay with it. Stay with it. It’s not not for the faint of heart.
Victoria Volk 20:22
I think that’s with anything in life that we’re passionate about, right? To be a bulldog to pursue it with a bulldog mentality. You know, for me, grief is, isn’t just about loss. And that’s a big part of my message. It’s, I want people to see themselves in the stories that people share. And understand that you don’t, someone doesn’t have to die for you to experience all the feelings that come along with grief.
Betsy Smith 20:48
I have a just that just brought to mind another experience I had, I worked for the same man at a community college for almost 20 years. And he got liver cancer, and he died in six months. I competed for the presidency of the college, against another internal candidate, there are only the two of us. And the six foot 255 year old white boy that used to play football at Florida, got the presidency. And immediately started taking pieces of my job away from me. That was a time Victoria when when I was hit with grief as well. Because I loved working at that college. I love doing what I did. I was really well respected and to be treated. It wasn’t forthcoming with it. It was like I was on a three year revolving contract. When I got my contract it was for two years. And I went up to his office and said, Tom, what’s this about? You said, Well, did we talk about this? No, we didn’t talk about this. So I handled that grief by requesting that the board by F my contract, so that I could leave and get out from under him because it wasn’t good for me. It wasn’t good for him. It wasn’t good for the students. And they did that. And then that’s when I started my coaching business.
Victoria Volk 22:29
And I’m glad you went there. Because toxic work environments is a real thing. And especially for women, I think in industries or in careers that are generally male dominated, or masculine ly dominated. Can you share a few tips for those who may feel marginalized or discounted, or, you know, almost like they’re pushed out?
Betsy Smith 22:57
I, in the last couple of years have created what I call bet seats, rules. And I didn’t sit down to write them, I’ll send you a copy. I didn’t sit down to write them. It’s just that every day something would come to me at that time. I was going to the gym three days a week and working with a trainer and I’d say I came up with a new rule. And they’d say, Oh, yeah, yes. So the first rule is for women in the workforce you get to choose. You get to choose whether you say you get to choose whether you ask for the race, you get to choose if you want to go the second one is stop apologize. Because as long as you are apologizing people will make you responsible for the mistake. And as you know, women are the worst about I’m sorry to interrupt you, but do you have a minute. I know this may sound silly, but and so stop apologizing. Another one is sit at the table. Another one is when you introduce yourself stand up and speak up. So they’re just little snip, snippets of things I’ve learned over the years building my career. I learned to play golf, because I got tired of being left out when the boys would go play golf. And I wasn’t very good at it but had a good time. And they were okay with it as well.
Victoria Volk 24:37
Yeah, I think it’s just exposing yourself to those different situations and experiences that just really help make you be a little bit maybe a more well rounded in those environments to to when it comes to time to speak up for yourself. Yeah. And so was that something that was emulated for you as you grew up?
Betsy Smith 24:59
Well, I lived in Texas when Ann Richards was the governor and and was at least to say, a tuffeau. Cookie. This is not a political statement. But she used to refer to George W as shrub. Because they were both in politics and Texas at the same time. She was a front runner. I mean, she made history. Not everybody didn’t like that history, but that’s okay with me. I learned. I can’t remember when that. And one of my rules is Why do you care what anybody thinks about you?
Victoria Volk 25:34
Was your mother. That type of person though was your mother, someone that spoke up for herself and asserted herself when she had to?
Betsy Smith 25:41
She did now. My mother was 411 I think she weighed 120 pounds when I was born. Square jawed German just like me. And you’re right, she she stood up for what she believed in, never worked outside the home a day in her life. So I give that caveat, because she didn’t have a lot to lose. I was five years older than my sister. So by the time my sister got in high school, I was Gone was the day of miniskirts. My sister and two of her friends went to high school with their mini skirts. And the principal sent him home. And my mother was the only one home so they went to our house. And my mother dressed those three girls in my old prom dresses, that were what we used to call T. Ling that was between your knee and your ankle, took him back to the high school, marched him up to the principal’s office, looked at the principal and said, Nobody tells my girls how to dress go to class girls. And they did. Now, I tell that story. And some people are horrified because it was so disrespectful. Other people say she was a feisty little a woman was she here she was especially when it came to her kids.
Victoria Volk 27:09
Yeah, I think of people like generally, this might be a generalization. But often people who are advocates are like social workers. And, you know, the Bulldogs of our culture? are in those types of roles. Are those often the people that you that are drawn to you, or what type of people are generally drawn to your consulting.
Betsy Smith 27:32
99% of the clients that I have, or the groups that I run are either executive and professional women or business women? And I have a speech that I start with that says, Do you know why women don’t get the races? They don’t ask?
Victoria Volk 27:51
Probably true. Yeah, I think that has a lot to do with self worth, right? Like not feeling you’re worthy.
Betsy Smith 28:00
Or that they’ll know I’m doing a good job, they’ll recognize it. No. And they may recognize it. And until you ask for extra compensation, they will never think about giving it to you. I had a I had a mentor group in North Carolina before young, professional women who worked in the pharmaceutical companies. And one of them wanted a promotion to a position that had become vacant. So we coached her on how to do that, you know, get all your success points together. Is this the right time in your company’s financial history to ask for it? is are they what’s going on in your company? So we got all that. And then I said to her, are you ready to walk? And she’s wondering, well, when you ask for this promotion, are you ready to walk? And that’s what Sheryl Sandberg wrote in Lean in. You got to be ready to walk. So this young woman goes to her boss and says, I’d like this promotion, here’s what I’ve done your spot I can contribute. And he said, Let me think about it. Of course, he was back the next day and he said, I’ll change your title and let you go ahead and take the job. But let’s wait six months to see about the money. She had another job three weeks later because she was already getting ready to walk.
Victoria Volk 29:35
I’m glad the conversation went here because it’s something that hasn’t been talked about on this podcast yet. You know, this type of grief that many women in these environments experience and you know, it has ripple effects right because if we are forced, forced but you know, we want to stay true to ourselves. It may require change and that with that change comes, you know, new bosses, new colleagues, you know, you might have to move. And so all of our choices, right have ripple effects and consequences and things. I do want to circle back to your husband, though, because that really is the heart of what we were initially talking about. And what is the what would you share with people who have someone who is going through a similar situation? And and I know you like the the tangible, not the tangible, but the practical things that you’ve already shared? But like, what is the hardest thing you think that is for people to navigate in the healthcare system?
Betsy Smith 30:45
Well, I think the, the entire language of the healthcare system is foreign to us. And every drug has at least two or three names. At one time, Jack had a cardiologist, a pulmonologist, a endocrinologist, and they were all treating their disease. They weren’t treating the person. And the sooner you can understand that, the sooner you can say, okay, so how does that relate to this? Or if that happens, how’s it going to? How’s it going? How’s it going to affect his afib, or how’s it going to affect is, whatever, medical professionals, they read notes, they all have copious notes, I can’t imagine how they could read all of them, and remember all of them. And I suspect they don’t. But again, they’re human beings. And that’s why it’s important to have what an advocate by your side. And even in business, if you want to go up the corporate ladder, you want to find an advocate, you want to find a mentor, and you want to find a sponsor, and the advocate can tell your story. The mentor can help you develop a strategy, but the sponsor is the one who will get you into the right place at the right time. The sponsor is the one who works at the same company, who provide you the opportunity to get to know people at a different level.
Victoria Volk 32:29
The connector, a connector, yep. What is the one thing that your grief has taught you?
Betsy Smith 32:35
To be able to enjoy every second of every day. And to you don’t ever get over grief. You just by God lived through it. And even a couple of weeks ago, I was giving my speech and tears are just rolling down my cheeks. I haven’t cried in weeks. And you just never know. And, and I said to the people in the audience, it’s part of the process. I’ve never been a crier in my life. But when it happens, now I just wipe my eyes and say it’s part of the process. And early when you meet people after your husband dies, and they’ll say, hey, they’ll hug your neck and say how you doing and the tears will start and they’ll say, I’m sorry, I didn’t mean to make you cry. You didn’t make me cry. I cry. It’s part of the process. Don’t worry about you know,
Victoria Volk 33:35
The tears. Were already in there. Right? Yes. Yeah, yeah. Love can bring that out. Right. And that’s a good thing. You know, when you feel love and support from others, it can. It’s a good thing. Absolutely. You can have this Bulldog mentality and this approach to life. But you also asked for help. And you searched for help. And I really want to highlight that because what do you think, was the catalyst for that? Because so many Grievers do grieve alone and think they need to do it alone.
Betsy Smith 34:10
I know and because I have a counseling degree, and I am a certified coach. I feel like if I have tonsillitis, I go to the doctor. If my heart hurts, I go to a counselor. So I don’t and I’m as you can tell, I’m an extrovert of the chart. So I don’t understand grieving alone. And of course, now, friends will say my nephew died and my sister’s really not getting over it well, and I’ll say Did she see a grief therapist? No, she doesn’t. She doesn’t want to and then I go into how it helped me. And just to have that safe place where you can say things you can’t say to anybody else. To have someone say you I don’t know what it looks like but work is the advocacy is your new work. It’s a different level of work
Victoria Volk 35:08
Well, and I think someone to have someone that can reflect back to you what you don’t see yourself is a part of a healthy part of the process.
Betsy Smith 35:17
Yeah. Yeah, absolutely. contacted a friend in North Carolina instead of writtens book. I’d like to be on your radio show. And her radio show is about business, small business. And she said, how does that fit in with business? So I did some research on the economic impact of caregiving on business. And the Will it very soon, people the age of 65 will be there will be more of us than there are people 45. And it’s affecting business. People, some people, some caregivers won’t tell their employer. I mean, they’re just running themselves ragged. And the typical caregiver is a 49 year old woman working full time and taking care of a parent or a child or, or somebody.
Victoria Volk 36:13
Or both, or sandwich generation. Exactly. Yeah, there is an economic cost to grief, empathy, the company empathy, they have an empathy, the empathy app, it’s called, they recently published a study. And I’ll put it in the show notes. It’s an ebook. And that has a lot of statistics and things. But also the Grief Recovery Institute, through which I am a certified Grief Recovery method specialist also did a study years ago on the economic impact of grief, and it’s, it is crazy. I can actually include that in the show notes as well. It’s the grief index study. And it truly is something that business corporate world, they don’t consider how unproductive people can be at when they’re grieving and how unsupportive their company really is to those grieving. I mean, they expect you within a week to be back and your typical self and performing at what how you were before. Yeah. And so you had your own business right at the time. And so what was that impact for you?
Betsy Smith 37:38
Oh, my business shut down. There was not enough of me to run a business and be by his side. I’m building it back now.
Victoria Volk 37:53
And there’s grief in that too, right? Exactly. Yes. Yeah. It’s never just one thing. It’s always grief just has ripples. We just do not understand that until we’re in the thick of it.
Betsy Smith 38:08
Yeah.
Victoria Volk 38:11
What has been the greatest help for you then as you’re rebuilding your life?
Betsy Smith 38:19
Book is making a difference in people’s lives. And that’s was my intention. My intention also, Victoria is to approach businesses and say it very probably you have this many people who are caregivers, and bring me in a couple times a month, get us together, and let me debrief them and work with them so they can regain their productivity. Or, let me work with people who are grieving. Although that’s, that’s not my specialty. Because I’ve been through it, I can at least have a conversation about it, and possibly refer. But you’re right. And I predict that eldercare just like maternity Lee, I think you’re gonna see I’m not gonna call it caregiving leave or elder care leave or something. To give give people the opportunity to go attend to that and know that their position is safe.
Victoria Volk 39:31
That’s a great tip. I actually, do you have another? Do you have a tip to share for caregivers? Like what is one thing that you would share with caregivers that you learned from your experience that maybe surprised you?
Betsy Smith 39:43
One thing is that I could give my husband shots in his stomach. That was a pretty big surprise to me, but you have to do it. I’m gonna give you tips and they are tips. Self care before care of others. Eat well On rest, exercise, talk to friends. Forgive yourself for not being superhuman. share with other people what you’re going through because they may learn from it. And they may have tips or advice for you. Now I have a dear friend down here who’s both our both our sister just died. And her husband has been in congestive heart failure for a long time. She’s very private, I would keep up with her. Because I had been through I had been where she was with a sick person, but she didn’t stay in touch with very many people. And it will be interesting, and I’ll be here to help her get back into whatever her new normal is going to be. The other thing is, maintain your sense of humor, which is sounds strange. But when we were in that little tiny town in the middle of Texas, his four adult children, me we would just get hysterical over dinner over nothing. But it was a bonding and fortunately, my husband’s family, my family shared that laughter is the best medicine My my, my mother’s mantra was you might as well laugh is cry. So fine, find something funny and allowing yourself to laugh. Laughing is like exercise for your innards.
Victoria Volk 41:41
That’s a great tip. Would you like to share about your husband, who he was? What you loved about him?
Betsy Smith 41:50
Is my sister said he’s the smartest person she ever met. And I said, Hello, I have a PhD. He was one. He was brilliant. Give him an Excel spreadsheet. He was a happy man. He found tennis very late in life. So he played tennis three times a week with people a third of his age. He loved being with me when I presented. And I have another book that I co authored 10 years ago, you’d go to the boot signs, and he’d take care of all the finances. unique sense of humor. We just hit it off. But we were late in life. I was almost 50. And he was almost 60 When we, as we say started hanging out together. So we came at love and marriage from a different perspective than than at 40 year old one.
Victoria Volk 42:49
Yeah, I think you kind of cut the BS at that point, right?
Betsy Smith 42:52
Yeah, exactly. There was not much dancing around. It was cut to the chase. Right? Yeah.
Victoria Volk 43:01
What was his name? Jack his name? Jack Jack Harkin. Thank you so much for sharing that. Is there anything else you’d like to share that you didn’t get to?
Betsy Smith 43:13
No? I’m good. We we had a very interesting conversation. But I enjoyed it very much.
Victoria Volk 43:20
Yeah, I think it went I think we covered a lot of good ground from,
Betsy Smith 43:24
Like you said we we kind of weaved around and intertwined and was very enjoyable for me. Thank you.
Victoria Volk 43:32
You’re welcome. Thank you for being here. And and where can people find you and the book?
Betsy Smith 43:38
The book is on Amazon 15 bucks. And then there is a Kindle edition as well on Amazon. And I do work with families and friends of people individually or in groups, not to teach them how to hit handle the Medicare papers. But just to talk about strategies for dealing with the healthcare system.
Victoria Volk 44:06
Do you do that online or in person?
Betsy Smith 44:08
Either way online, in person on the phone, however they need to reach out?
Victoria Volk 44:13
And where can people find you to learn more about that?
Betsy Smith 44:15
Look at betsysmith.com
Victoria Volk 44:18
All right, and I will put your information in the show notes. And thank you so much for being here today. I I am really glad a lot of the topics came up because like I said they haven’t been covered yet on the podcast and I really appreciate your time and sharing. Thank you for the invitation. All right. And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Chronic Illness, Grieving Voices Guest, Grieving Voices Podcast, Parenting, Pespective, Podcast |
Rachael Burns | The Space Inbetween
SHOW NOTES SUMMARY:
How would you live your life if a ticking time bomb was woven into the very fabric of your everyday life?
Would you carry on business as usual? Would you live like tomorrow is not guaranteed and chip away at your bucket list?
Rachael’s story isn’t about a ticking time bomb that is in her body. Rather, it is about the ticking time bomb of grief that lies in wait due to the one her beloved has in his body. However, that is only part of Rachael’s story.
What if, newly married, you found out you were pregnant, but not only with one baby, but two! What are the odds?!
But what if, a day later, your spouse has a seizure; soon after you find out he has brain cancer? And, not just any cancer – this kind is aggressive, it can never be completely surgically removed, and most people die within 18 months of diagnosis?
The ripples of grief are felt deep and wide. And, when the love of your life, and the father of your children, are living with these odds, how do you truly live?
Rachael’s story doesn’t stop there. She would find herself in her own health crisis after having the twins. Her kidneys were failing, her husband had to forego his chemo because she was in the hospital, and they were both faced with the question of what if something happened to them both? Who would take care of the babies?
After the dust settled, processing all that had transpired has been a process all on its own as well. Grief isn’t only about death. As Rachael’s story illustrates, it’s near-death experiences or living while death hangs around waiting to take you out that cause grief, too.
RESOURCES:
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If you or anyone you know is struggling with grief, free resources are available HERE.
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CONNECT WITH VICTORIA:
Victoria Volk 0:00
Thank you for tuning in to grieving voices. I am your host Victoria Volk, and today I have with me Rachel burns. She is the founder of true worth financial planning, which helps newly single women get their finances back on track after divorce or the death of a spouse. Her passion for helping women in transition was inspired by her own experiences with grief after her husband was diagnosed with brain cancer. She is a certified financial planner and a certified divorce financial analyst. But most importantly, she’s the mom of three-year-old twin boys. Busy, busy time. Thank you so much for giving your time to my audience today.
Rachael Burns 0:41
Thank you, Victoria. Thanks for having me on.
Victoria Volk 0:43
We have chatted briefly before and I’m excited to chat with you again and for you to share your story with my audience, because I’ve heard it a little bit, but we didn’t get into the deep of it. And so I’m looking forward to that today. But what has been your experience with grief, up until what you’re about to share today?
Rachael Burns 1:10
Before my husband’s diagnosis, my experience with grief was very limited. Fortunately, I had not experienced experienced much in the way of loss except for, you know, grandparents passing away and things like that, but nothing that really shook me to my core, like what I was about to experience. So I had been very fortunate to have a very boring life in that way up until then.
Victoria Volk 1:42
How long were you married? When you and your husband got the news?
Rachael Burns 1:45
We been married probably about two years when we found out when he was diagnosed. So it was still, you know, early, early in marriage. But we had been together for several years before that.
Victoria Volk 2:01
Having children. Was that a conscious decision? Or I mean, I don’t want to say where they oopsie you know what I mean? But because I think that would be a challenging thing, right? Do you? Do you take that path? Don’t you take that path? Like what did that look like that decision making? And
Rachael Burns 2:18
So we had them on purpose, we knew we were going to have one we I guess the second one was an Oopsie. Because they’re twins. We didn’t know we’d have to. But we had planned on having kids. But we found out we were pregnant. I think the day before he had his first seizure. So we didn’t know he had brain cancer when we when we got pregnant. So basically, he comes home from work, I’m like I’m pregnant. And then the next day he had a seizure, and didn’t tell me because he didn’t want to overshadow the good news. And it was a relatively minor seizure. And so he wasn’t super concerned about it, he went to the ER by himself and didn’t tell me this is totally like my husband. And because he had had a relatively benign brain tumor when he was young. And so it wasn’t like that alarming to him that he had a little seizure. So basically, we found out about these two things that are almost exactly the same time he was diagnosed. So we found out we were pregnant, found out he had a brain tumor, found out they were twins, and then found out it was not a low grade recurrence of his old tumor. It was super aggressive grade for glioblastoma. So all of this news we got at almost the exact same time.
Victoria Volk 3:37
Wow. What are the chances you must have asked yourself that a million times like what are the chances like why?
Rachael Burns 3:44
Yes, I thought about that. And I and then I kind of came to the conclusion that we are the one percenters we are the ones that all these really rare events happen to? It’s like, what are the chances of having twins? What are the chances of having this brain cancer if literally, I mean, it was like, it was really bizarre. The odds of all of these things happening were so small that it was like, Well, of course it’s going to happen to us because we’re one percenters or point one percenters?
Victoria Volk 4:15
So the tumor that he had as a child had that been removed?
Rachael Burns 4:19
Yes. So we he was 16. He had a grand mal seizure, and they immediately did surgery and removed the whole tumor. It was a low grade tumor, you know, they took it out because they don’t want it in there. But it wasn’t even really growing. Like they don’t even know how long it had been there. So when it came back, it was in the exact same spot. And, again, they were like, oh, it’s probably not a big deal. It’s probably been growing very, very slowly all this time. But when they took it out, and they biopsied it, they realized it that wasn’t the case. It was a it was a high grade tumor. and that type of tumor you don’t, you don’t ever get it all out. It’s, it’s like, has little tentacles that kind of grow through your brain and you can’t see it on an MRI all the time. And it’s not something you could ever completely remove. So very, very different situation than when he was young.
Victoria Volk 5:16
So what was that like? Like your pregnancy? Like, I mean, that’s it’s stressful alone. I imagine hearing news like that, yeah. And planning for, because what the prognosis was what
Rachael Burns 5:28
The prognosis was really bad when they told us that that’s what what came back with the pathology. They said, Don’t go online and don’t google it. Because the odds are really, really bad. Like, you’re going to be really depressed if you go online and look at the life expectancy, because statistically, life expectancy is an average of 18 months after diagnosis. And that’s really like best case scenario, that’s assuming that you’re able to have a successful surgery and treatment with radiation and chemo best case scenario, you you maybe have 18 months to live after that, but a lot of people and people that I’ve met at the hospital or in waiting rooms for radiation, or whatever, a lot of people die after a couple of months after being diagnosed. So it’s like a really, the prognosis was really bad. They, they said, you have some things in your favor, you’re young, you have these certain genetic traits like that they were able to see when they did the pathology that they could tell that his case was, you know, it’s still an aggressive cancer, but it’s not as horrible as it could be. So there were like, you’re probably going to be on the higher end of the range. But still, they gave us I mean, it was, it was like a couple of years, was the timeframe that they that they gave us. And so that was a difficult thing to process. And as they’re telling us that I’m sitting there with my bagel belly, you know, I’ve got twins that are on the way there was so much. I mean, what we thought our life was in an instant change so much having the kids on the way just made it extra complicated. I mean, obviously, but and extra tragic. And it was just so much to process at one time,
Victoria Volk 7:24
And even just having twins is risky to write. So yes, like, what is the risk to you, as a mother and I can’t even imagine, give us a day in the life of what that was like.
Rachael Burns 7:37
So at that time, Rob had taken some time off work after because he they got him into surgery pretty quickly. And he started doing radiation right away. And I was still working, and just getting more and more pregnant by the day. So, you know, we’re still trying to do normal, quote, unquote, normal stuff, I was still going to work and Rob wasn’t allowed to drive because of his seizures. So I was taking him to radiation every morning before work, and dropping them off. And then you know, leaving for work worrying about him having a seizure when he’s home, alone. And, you know, I’d go to work, I try to get everything done, I tried to be as normal as I could, but it was, it was just, it was just insane to like manage the treatment, you know, the the logistics of the treatment, but then also just managing the emotions and the fear and, and trying to support him. And it was so overwhelming that you just kind of go into shock. And you kind of don’t even realize, you just you just kind of go into survival mode, and you’re not really feeling anything because you’re just like so overwhelmed that I just kind of went into autopilot and did what I had to do to get through each day. Until Until the kids were born basically. And then that definitely shifted a lot of the focus off of his situation, which was kind of kind of a good thing for a little bit. But once the kids were born, then I had some major health issues. I had some pretty bad complications after they were born and was hospitalized for a couple of weeks. So Rob was home, he had to take a break from chemo, because he was home alone with the kids when I was in the hospital. Luckily, our moms were dropping in to help and stuff but like, we had to disrupt his treatment because I was in the hospital with like kidney failure and a pulmonary embolism and all of this like majorly life threatening postpartum stuff. And so he was freaking out thinking I was gonna die and then he was going to die. And then we would have these little babies that had no parents. You know, it’s one thing to plan to try to grasp. Something happening to one of us but like Yeah. And that, that that fear was relatively short lived because I got stabilized fairly quickly. And after that, after I got home from the hospital, I was not in any imminent danger. But there was a time there were, like, we were worried about the kids being orphans, and, you know, needing our parents did raise them, or it was just like, wild, wild time.
Victoria Volk 10:24
And you’re sitting here and you’re telling me about it, almost like it, it’s a recipe. And, you know, I’m, I’m very curious, like, what was the day like, we’re just all kind of hit you, and you allowed yourself to feel and get off autopilot.
Rachael Burns 10:45
It took a, it took a couple of months after the kids were born, where I looked back and thought that was really bad. That was really, really dangerous. It was a really dangerous situation. might let me I mean, health wise, like that, that was as close to dying as I’ve ever come. And once I actually had some time to think about that, it scared me even more like how critical it was. And then, but then, like, thinking about my own health would make me feel like, this is small potatoes compared to what we’re dealing with, with prob like, I’m, I’m gonna be fine. I will survive, but his situation is the same. And so is like, realizing what happened, like finally kind of feeling some feelings about it. And then quickly, remembering Oh, yeah, there’s bigger stuff to worry about. And going back to like dealing with that. So there’s just been, it’s been like one thing after the other, and there’s been so much going on that it really is hard to feel anything, because you have to deal with the next thing. Right away, and you don’t even have like the bandwidth to like, acknowledge your feelings, which is kind of weird.
Victoria Volk 12:14
Do you feel like that’s true for you today?
Rachael Burns 12:17
Yeah, it’s, it’s easy to it’s easy to get wrapped up in the day to day stuff and stay distracted and kind of detached, that’s easy, because just because of the amount of activity in our lives, but then it’s hard. You know, when when I do when I do think about things, and I do remember things, and I do feel those feelings. It’s like, well, what am I going to do with that? I can’t, I mean, I can’t fall apart, I can’t flip out, I can’t, I don’t really have any option other than to just keep chugging along. And so it just becomes this like new reality where there’s this, like, underlying stuff that we all know is there. But there’s not a ton that can be done about it. So we just kind of pretend like it’s not there, which may or may not be healthy.
Victoria Volk 13:13
Do you feel like it’s been impacting you or has impacted you, like physically your body or like emotionally psychologically?
Rachael Burns 13:23
Yeah, it impacts everything. That kind of stress absolutely impacts your, your body and your physical health. And it’s kind of hard to know what issues are stress related and what are, you know, leftover issues from having twins or, you know, COVID related stress and inactivity and all this stuff there. It’s hard to know, it’s hard to know, like how to attribute it, but But it’s certainly impacted every single aspect of my life, physical, emotional, everything. It’s just it’s not always super obvious. But I mean, someone has to kind of beat it out of me a little bit.
Victoria Volk 14:11
I don’t know if you get the impression I’m trying to beat it out of you. I know. I am, I am needling a little bit. Because what I can relate to tiny, just tiny tiny is, you know, we had a family emergency health scare with our son recently and I recognize that autopilot where you you’re shift your focus to what needs to be done and your energy to that other person and, and then when you get in the quiet of your own head, and in your own space, it’s like roof like it just hits you and so have you had moments like that? And have you allowed that to wash over you and
Rachael Burns 14:57
I haven’t felt over overwhelmed with the grief and quite a while just because things feel pretty normal right now, he’s my husband is not in any treatment, his tumor is not growing, it hasn’t been growing for a while. He’s going to work, he’s acting normal. And it’s easy to forget that that ever happened to kind of feels like, that was about dream, or that was a past life, or it’s, it doesn’t even feel like that was real. And I know that he and I deal with things very differently in how we express grief. And I’m someone who kind of verbalizes stuff. And he is someone who, who goes inward and needs to be quiet and not talk to people and doesn’t want to acknowledge his emotions or talk about them. And so it’s even if I wanted to talk about it, or express myself, that’s not really someone that I can do that with, because that’s not his style. And that would actually upset him. Because I, it might be more painful to him that I’m raising things to the surface, and he doesn’t want to do that. And so, you know, you can only express that with certain people or in certain situations, but it’s, I mean, for the most part that’s not happening at home. So yeah, partially, it’s like easy to kind of ignore and pretend like it’s not happening. And then and then. And then even when I do remember, it’s like, well, I don’t know, I don’t really have a ton of options and how and how I can deal with that. I have to keep going, I have to make things normal for my kids, I have to build my business and keep working and be in as good of a spot as I can in case something changes. And falling apart emotionally doesn’t allow me to do that. So I just I kind of feel like well, I don’t have the option of like, really flipping out. Even though I’d kind of like to sometimes.
Victoria Volk 17:22
Do you channel that energy in a different way? Like, have you found a way that you can channel the energy that that emotion when it comes up or or even just to when it’s not coming up. But just because I imagine there’s some anger there, like, you know, just anger of this. It’s this ongoing thing that you can never outrun? Right, you get out run it? And it’s always just like you said, the undercurrent of it is there. Yeah, Have you have you found a way to channel your emotion.
Rachael Burns 17:22
I don’t know that I’ve channeled it but what what I have noticed myself doing is just getting more and more focused on work, like just it’s all I’ve been thinking about and, you know, on the nights, weekends, whatever, I’m always just, like, really obsessing about work. And part of that is because I enjoy my work and part of it is that work needs to possibly support my family at some point. And part of it is I need to keep myself busy so I don’t dwell too much on things. So that’s not the only reason why but I do think that some of that energy gets channeled into the work just because it’s something that I can control it’s something that I can make positive changes in our life does make me feel like I am not powerless. I guess you’re doing something. Yeah, like I’m being productive. I’m taking the right steps because you can’t really be you know, with grief, it’s not productive. You’re not a comp, you’re not like, Oh, I’m I’ve gotten this much grief out of the way so then I only have this much more. It’s like it’s it’s it’s always going to be there. It’s not going away. But part of me feels like okay, I have to be doing something to make the situation better all the time.
Victoria Volk 19:21
In Grief Recovery. One of the myths of grief is keeping busy. So I just want to you know, for anyone listening if they find themselves in your story, have it’s one thing to because my husband he just last night, I’m nights weekends. I’m a hustler, I hustle maybe it’s part of our personalities to like how we’re wired right? To almost detach from what is happening and then pour energy into something that we feel like you said you can control it you have some say in What happens here? I don’t have say a nap. But I have say in this right, yeah. And I find it interesting, the work that you’re doing is with widowers. And so a part of their story, you obviously can relate to in a way that isn’t exactly the same. But you understand this idea. I don’t want to put words in your mouth. But I actually, you’ve expressed this before, briefly. But could you just articulate how your work is being influenced by your experience.
Rachael Burns 20:36
While we were in the midst of everything, and while it was fresh, one thing that I remember is, obviously being overwhelmed with all sorts of parts of this problem that we had to deal with. And some of those were very practical things that we had to worry about. Some of those were, you know, just worries, but because of my background, in my career, you know, I’m a financial person, and have been for a long time. And so one thing that I didn’t worry about at that time was anything financial related, because we had all the things in place that we were supposed to have in place, we were like the poster children of having an estate plan done and having the right insurance and all these things. And so when this happened, I didn’t need to worry, oh, my god, like, if he can’t work, what’s gonna happen? Will you have disability income, if something happens to him can I like, there was a lot of practical parts of that, that I didn’t have to worry about. And the the idea of needing to manage the finances on my own, if I needed to, did not bother me, because I have that background. But then I was thinking, you know, not everyone has that kind of background. And that, for a lot of people is a very, very big component of their stress and their fears. And that was something I didn’t have to worry about. But I wanted to help other women, particularly who are in that situation, because that was something that I could at least offload for them, or help offload? You know, I can’t make things go away, but I can, I can help them understand it and make a plan for the future, at least for their finances. So my goal was just to alleviate some stress from someone who’s going through a difficult transition, whether that’s someone died, they get divorced, they, you know, something unexpected happens when there’s all sorts of transitions that can happen where we have grief associated with that someone doesn’t have to die. But that’s where I felt like I could relate to women that were in that situation, and I could offer them my financial knowledge, but also I my own experiences with that, that I think that helps give me a different perspective and helps give me helps me gives them better quality, support.
Victoria Volk 23:09
And to me, it sounds like it’s meaningful work to to as you’re kind of journeying through this process with your husband.
Rachael Burns 23:19
It is it absolutely is. And I had a feeling that would be meaningful, but I never knew just how much I would get out of it until I actually got into it. Because I’ve been a financial advisor for quite a while but didn’t work with women in transition until everything had happened with our family. And I enjoyed my job before. But once I was working with women in that niche, I got a whole new level of satisfaction from helping women who really, really needed help, and I really identify with them and I have met just hearing their stories and learning about them as has just been such a amazing experience. Even though I’ve been working harder than I ever have before. It doesn’t feel like work because it’s so enjoyable, which is so weird, because a lot of the situations or difficult situations that I’m trying to help with, but it doesn’t feel like work. It feels like I’m trying to help a friend. And that doesn’t feel that doesn’t feel like work. So it gives me a lot of energy to be doing the work that I really get a lot of joy from
Victoria Volk 24:34
That’s when you know you’re aligned in what you’re doing because yeah, like my husband said last night like Don’t you get tired of looking at that computer? You know, like he has to literally almost like pull it away from me and I’m like, but it doesn’t feel like work. Yeah, you know, I’m like creating posts, you know, for my Instagram about grief and, you know, sharing something that I think might be helpful or working on my newsletter or doing this podcast or doesn’t matter what it is, if if I feel like it’s serving someone, I get a lot of gratifying gratification from that. But I want to ask you to, because when I was a new mom, motherhood brings out like all of your insecurities known as entrepreneurship, you’re like, you’re you are where I was, feels like forever ago. And I remember what that time was like, and I personally was, felt like a basket case, right? Because I had grief that I had dealt with. I was, like I said, all my insecurities were coming up in my parenting and all that all these things, right. And so what I just can’t imagine, like also trying to parent twins, first of all, but just trying to parent twins, parent in general, the parent twins, and, and having this undercurrent of concern, fear, all of those things, while trying to navigate all the feelings that are coming up being a mom, like, what does that look like for you.
Rachael Burns 26:15
I feel like we had so many things going on that we’re competing for attention, that it prevented us from obsessing too much about any one thing. So because of what was going on with my husband, it made me a little bit more relaxed. When it came to the kids. I think that if the brain tumor stuff had never happened, I honestly think I’d be a much more neurotic mom. Like, I think I would be panicking about the house being dirty, or about the kids eating something that’s not organic, or like, I know how I was before all of this has happened. And it’s one good thing that has come out of this experience is my priorities have changed. The things that I actually worry about, that list has gotten a lot shorter. Like it’s just made me reassess what’s actually worth worrying about. And so, because of that with the kids, I’m like, whatever, like, I’m doing the best that I can, I genuinely believe that like, this is a tough situation. In a lot of different ways. I’m doing the best I can, I just don’t have the bandwidth to like, freak out about them. spilling stuff all over the carpet and permanently staining it. Like I’m just like, whatever, we have bigger fish to fry. But then at the same time, it goes the other way too. Like with Rob stuff, it’s really easy to get lost in that kind of despair. But then I’ve got these like little kids running around, like hitting each other with fake swords. And it’s like, Okay, I can’t even focus on one thing long enough to like, really get upset about it. So we’ll see what happens when the kids get a little older and aren’t like when it’s not as chaotic in my house.
Victoria Volk 28:10
There you’re keeping busy right now.
Rachael Burns 28:13
Gosh, yeah, yeah. And then also, they just are so hilarious and sweet and wonderful that like there’s so many joyful moments throughout the day that it really counterbalances the stress, or the or the worry, because you just can’t not be in a good mood when you’re around them. For the most part, they do like, scream and you know, they’re like me press. But for the most part, there are really lovely little distraction.
Victoria Volk 28:48
I just was thinking my son, we’re talking about my son, he’s going to be a senior in high school next year. And my husband’s like, I just don’t want to believe like, you know, it’s, I just so remember, I just last night I was just last night I was going off to sleep and I was just like, just for a day I would love to go back in time. And just revel in their curiosity and their I could cry just thinking about it. How Yeah, just just how fast the time goes. And like you said, it’s shifting your priorities. And so it’s not even that they’re this beautiful distraction. It’s like they bring out something when they bring out your insecurities. They also bring out like the kid in you to write the things that you know, you want to get out your sword and pretend and chase and you know all of those things. And fortunately, my husband is like a big kid and that is still a thing in our house. Yeah, there’s no such thing as boredom when there Yeah, that’s such a fun age. And I think Got to allow yourself to embrace that time, regardless of what’s going on. It is probably a beautiful gift that these little people have given you.
Rachael Burns 30:10
Oh, my God, I, this situation would be. So it would be so much different. I think it’d be so much worse if we didn’t have them. I think about that. And I think, oh my god, I can’t even imagine like going through this, just with the two of us and not having something. There’s always something to look forward to with kids. Always. It’s like, like, I’ve been telling my husband in the last couple of weeks. I’m just so excited for Easter, because the kids get so excited about Easter egg hunting, he’s like, it’s February, like calm down. And I’m like, No, but there’s always something to be so excited about. And oh, I can’t wait until they can do this. Like there’s always some milestone, it’s just around the corner. That’s so exciting. And it’s sad when they’re changing so fast, and they’re growing so fast, and you miss how it was when they were smaller, but at the same time, all of the new fun things that they do makes you forget about what you were sad about.
Victoria Volk 31:11
So I’m curious amongst the craziness and the quiet when you have it and everything going on with your husband. That is pretty steady, right? It’s steady. Yeah. How have you been tending to yourself? What does self care looking like for you?
Rachael Burns 31:30
Self-care has been practically non existent. I have been the lowest priority thing in the house for quite a few years, which is understandable. But I haven’t been focused on like, doing something nice for myself, because it’s just not the highest priority. So friend, one of my friends asked me, like, what are you doing for self care? And I laughed, and I was like, take a shower once a week. Like, that’s really exciting. That’s like a, that’s like, my me time is like, five minutes in the shower every few days.
Victoria Volk 32:10
Oh, my God was like, I mean, it’s just me.
Rachael Burns 32:15
Like, I was so I mean, back then it really was that wild. Like, I genuinely could not get it. If you had to be around me, within, you know, a couple of feet of me at that point. I I’m sorry, to anyone who had to be around me. But you know, being a brand new mom. There’s no such thing as self care. You’re not showering, you’re not brushing your teeth and not brushing your hair. You’re not eating anything except for stuff that like fell on the floor. Like, your needs just go out the window. And they kind of stay out the window for a while. So yeah, I don’t know. I don’t even know. Like the concept of self care is like really foreign to me. Right now. I understand how it will work for some people. It’s like, if I can get away for like, a quick weekend with like, my girlfriends that self care. And that’s, that’s like a really big luxury for me. Like if I can get a day or two to like, get out of town. That’s like a big, big deal. Go like drink some wine with my friends and just like sit there. That’s like, Oh, that’s such a recharge. That’s the only self care I can think of right now.
Victoria Volk 33:36
Other than what you’re doing, but you I mean
Rachael Burns 33:39
Other than taking fantastic care of my skin. I mean, that takes up a lot of time too. But
Victoria Volk 33:44
Well, that’s self care. Self Care. I’m just, you’re just kidding. So it’s just natural. No, it’s
Rachael Burns 33:50
It’s like I put this filter on the Zoom where it’s, you know, you can do that on Zoom. It’s not like a crazy filter. It’s not like it doesn’t look fake. It just kind of blurs everything. So now we’re getting into the grief of aging here. It’s not real. Yeah, that’s, that’s some grief in itself.
Victoria Volk 34:09
It is. Oh, yeah. I’m gonna have to check off these filters.
Rachael Burns 34:13
Well, and also you said, you know, you don’t look like someone that’s really stressed out. It’s called Botox, then your your face just can’t make sad faces anymore. That helps that will make you seem like you have it together because your face can’t physically even move like that. Like I can’t look sad. Not for another three months or so until it wears off. So you’ve got to keep it going.
Victoria Volk 34:37
Okay, well, this is the direction of the podcast I didn’t expect. This is real talk. It is real talk. thing. It’s like you’re in the you’re in the thick of it really all you’re in the thick of it. And I say the trenches of motherhood. Now I’m sure you have friends that have kids that are older. Oh yeah. And you have plenty of friends that have told you, you can’t get from an empty cup. Do you feel? Do you feel like you’re like your cup? Do you feel drained?
Rachael Burns 35:10
Yes. Okay, I do. But I feel like that is a temporary state. I know that things will not always be as difficult as they are now. Like, I know that and the kids keep getting older, the kids keep getting easier to deal with. And like, there will be a day when I don’t have to worry about Rob’s brain tumor coming back, because someday he won’t be here. And then like, then there’s other stuff to be worried about, obviously, at that point, but like, the way things are right now is not the way that things will always be. And anytime that things are really difficult, I always remember, they will not always be this difficult. This is like a this is just a point in time. And it’s always changing. So I don’t remember where I was going with that. But sort of that’s like, it’s Oh, my cup, my cup being full. I know that my cup will refill at some point, but it’s just not. It’s just not like, a top priority right now, I guess. Do you try to keep just trying to keep everyone alive and keep keep working? And that’s like, all my, it’s all I have energy for?
Victoria Volk 36:27
I had that thought to like, you just keep on going and keep on going and keep on going. But I look back in hindsight. And it’s like, gosh, if And granted, it was grief, like Grant grief was a huge factor for me and, and your situation is entirely different than anyone listening to this, their situation is going to be entirely different to about I think it’s finding what, like you said just a weekend, or even just two hours in an afternoon to your favorite little shop, or going to a coffee shop and just sitting and watching people which is you know, is that fun? Just watching people. Yeah, making up stories in your head about people like their lives, wondering, you know, that’s, yeah, I like doing stuff like that. But anyway, it’s finding stuff that bring you back to who you were right? Like, kind of, it’s almost like the children, you know, the children remind you of when you were a kid, and it’s doing the things that remind you of the essence of who you are. And I’m I lost sight of that for so many years. And I think if if what what are just share with me, if you don’t mind, what are a couple of things that remind you of the essence of who you are.
Rachael Burns 37:48
That’s interesting, you brought that up, because that’s something that I’ve realized, you don’t realize that you’re forgetting who you are until you remember something. And it can be something so simple as a song that you hear a shirt that you find in the back of your closet, there are these little reminders that I have that take me back to this time when life was simple. And I think I’m a happy person now. But back then I was happy in a very uncomplicated way. And all like hear some song that I didn’t even like that much. But just like a song that I remember from when I was 20 or something. And I’ll just be like, Why do I feel things right now? Like what is what is it about the song like, the Super Bowl was last weekend, and I watched the halftime show. And I remembered like, driving around in my 1996 on a prelude listening to 2001 from Dr. Dre. And I was just like, Oh my god. Life was so fun. All day, every day back then, like, my only job was to just have fun and like barely show up at school. And that was the only requirements of me like today. Yeah. And then in then I’m like, Oh my gosh, I remember I used to be this person who used to have these interests. And I used to do stuff and travel. And I enjoy I enjoyed listening to music and I enjoyed going to find bars and I enjoy doing all these things. And then I’m like, I haven’t done any of those things and so long that I forgot about those parts of myself. Like I forgot that I used to be really silly and I used to I mean, I still laugh a lot but I have forgotten who I am. And I don’t know if that’s more of a grief or if that’s more just having kids and not having any time to do anything for yourself but that that’s like a super weird thing that I’ve experienced.
Victoria Volk 39:45
I did do I experienced that too. And it just I have I use the Passion Planner. And did you know the Passion Planner? Makes stickers I love stickers. And I collected stickers as a kid, like I had tons and tons of stickers, like brings out the kid in me. Every Sunday, I get out my highlighters and my stickers and I, you know, I plan my week for fun with stickers like, yeah, how ridiculous. But I think it’s this little thing that I found that connects me to myself. And I just encourage you, and anyone listening, that when you’re in the thick of stuff, grief, transition, parenthood, whatever it is, to do something that reminds you of the essence of who you are. So you don’t lose touch of that. Because when it feels like a part of you is died. There’s grief in that too.
Rachael Burns 40:39
Yeah. And that’s a very, very real thing is the death of who you once were. Because once once Rob was diagnosed, obviously, there’s the grief associated with the very obvious part of that. But what really disturbed me the most in that time period was, I will never go back to who I was, before I knew that this was coming. I will never ever be that person anymore. I will always have some form of this grief. And even when I would see pictures of myself from like, a few years before, but I didn’t know what was coming. And I was like, I’m like smiling like no idea what’s going on. It’s weird to think that that person is dead, that person will never exist again. That’s a really weird realization. That’s like a really weird part of grief that I wasn’t prepared for I guess.
Victoria Volk 41:45
Yeah. And I talked to someone else, just before we hopped on and one of the themes of our conversation was that she allowed herself to change. And I think we kind of bucked that, or we try to resist that through grief, like grief changing us, but it’s going to whether we like it or not, but it’s allowing that unfolding of the new Rachael 2.0. But when I speak about connecting to the essence of who you are, it’s not even there’s parts of you that regardless of what happens, never change, right? Like, I still love stickers like that is that brings out the kid in me that brings out the essence of who I am. And so that’s really what I’m talking about here is I am not the same person that I was before. Whatever happened to me, you’re not going to be in anyone listening. That’s the case as well. But it’s really, I think, before the world got a hold of you right before brief got a hold of you. What were the things that brought you to life like sparked joy, if we got to.
Rachael Burns 42:52
Marie Kondo
Victoria Volk 42:53
Yes. Marie Kondo our lives, you know, but it really it’s, it’s coming back to the simple things like that, like collecting stickers and, or like playing with playdough with your kids, and making different creations or, you know, and that’s, I think what the gift of those ages are and parenthood is that it’s like you have permission to play. Because if, let’s say you’re just, it was just you and you’re playing with playdough. And someone calls you Hey, what are you doing? I’m playing with playdough. What? You know, you kind of get some side eyes, like, you know, what, when you have little ones it’s, it’s a permission slip to just play? Yeah, yeah. It’s, yeah, I think you can rediscover, there’s an opportunity there for you to rediscover who you were before all of this and who the essence of who you are. Just in everyday parenting with your kids. Yeah. Putting on the music putting on Dr. Dre. Maybe some clean edited. Yeah,
Rachael Burns 43:57
I know, the kids are old enough to where they repeat cuss words. Now, once
Victoria Volk 44:03
You bring some of your play into their world. Yeah, they get to know you that way, too. You know, yeah, that’s good advice. And also to maybe bring that to your relationship, you know, the things that brought you together and you know, before Yeah, then it really it is so important to make your unit a priority. And you but I think if if you have to choose, it’s a lot easier for you to choose time with your spouse than you alone. But that is self care, too. Right. If you’re doing something you enjoy, and you’re sharing it with him, that’s self care, too. Yeah, yeah. When I did for this to turn into like a coaching session. It just so many reminders for me of of where I once was,
Rachael Burns 44:54
yeah. Yeah. It’s funny. We’ve been one thing we’ve been doing is because he works, or his office is close to the house, I work from home, and we’ll like, Go, he’ll be like, Oh, I’m gonna come home for lunch. And we’ll go get lunch. And it turns into just like having cocktails and not working and taking the rest of the day off. But it’s like this really nice thing that we’ll do every once in a while, where we’ll just kind of forget about all of all of our responsibilities. And it’s just time that we haven’t really spent together in a long time where we’re just like, hanging out not dealing with real life stuff.
Victoria Volk 45:43
Play hooky from life. Yeah. playing hooky is fun. So what has your grief taught you?
Rachael Burns 45:50
It has taught me all sorts of things, it’s taught me, I much stronger than I ever thought, which is like, I feel like that’s kind of cliche, but I can endure a lot. And still keep doing what I need to do. Like that has become very clear out of this. situation, um, like, I can handle, I can handle a lot. And if I can handle whatever already been through, there’s really not a lot out there that scares me. Which is like a kind of weird, empowering feeling to have, even like thinking back to when I was in my late 20s. Before I had kids and everything. And like, if I had to go get blood drawn, I would seriously cry. Like they would, they’d be like, Oh, my God, this girl is such a loony. And like I was I was just like, so dramatic, like, Oh, my God, I can’t like, I don’t know, I just, I felt like I had all these kind of fears that were really silly, and really kind of irrational. And then now, after having the kids after having the complications, I remember thinking, There’s not one medical procedure that I can think of, that scares me after what I’ve gone through with the poking and the prodding and the IVs. And the tests, and the, there was a lot of like, really, extraordinarily uncomfortable or painful moments through all of that. And I’m like, There’s nothing that I can think of that would really scare me at this point. And the same goes for things that can happen in life, like losing a job, or losing a family member, or, you know, whatever things that used to scare me, I’ve already proven that I can handle it. So there’s like not a lot to really be scared of anymore. Other than being scared of something happening with my kids, like, there’s so many fears that I didn’t have that I have now, like, oh my god, if they got hurt, I would just like lose my mind. Aside from that, I feel pretty fearless. I can accomplish more than I ever thought was possible. That’s been empowering. And and when I went out on my own and started my own business that that had a lot to do with it. I’m like, Well, clearly I can handle it, because I just survived all of this. So running a business is not. That’s not a big deal at all. I mean, it is a big deal. But it’s not something that scares me. So that’s something that I’ve learned about myself in the process.
Victoria Volk 48:40
I’m finding it a curious aspect of grief that I’m just kind of came to light for me today. And I was talking to someone before I spoke with you, and she’s an entrepreneur, and we’re just kind of thinking about how, as entrepreneurs, you even if you never felt like a leader brings out your leadership skills, right, you have to be able to lead yourself you self self determined you have to have it brings out all it’s brought out aspects of me that I never like, I’m sure people looking like when people see me now. And like think of me when I was young, like, you know, fifth, sixth, fourth grade, whatever, like, oh, never thought you would do that. Right? You know, like I was one of those kids like, Yeah, and so I’ve proven to myself, right? It’s like this, you have to prove it to yourself. And so I think there’s this element of self leadership that comes out of being an entrepreneur and I think that really serves us as Grievers to be able to lead ourselves through the process of grieving in a way that well hopefully is positive and healthy, but it can go the opposite where you just pour yourself even more into work and become a workaholic, and that’s not healthy. I’m talking in a healthy way but I just want Want to highlight though that that’s probably really serving you in that way and will continue to serve you as you navigate this, the unknowns of all of this?
Rachael Burns 50:09
Yeah, one thing that it’s taught me is I really trust myself more than I ever have. I really trust my judgment. And I trust my decision making. And I’m very confident in the decisions that I make now, which has been, I wasn’t expecting that. But it does make me feel like I know what I’m doing. I’m not, you know, this isn’t my first rodeo. So that’s been, it’s been very empowering in that way.
Victoria Volk 50:45
What has been the biggest support for you? Like, especially then, like, when you first found out all of this stuff was happening? Like, what was the most helpful thing that? Where did you find the most support?
Rachael Burns 50:59
Yeah, I, there were two phases in that. And the first phase was maybe the first year after he was diagnosed. And I was not wanting to see people, I was not wanting to be around people, I was not wanting to talk to people about what was going on, I was just, I just wanted to like crawl in a cave and just hide until it was over. And at that point, because I wasn’t really ready to talk about it too much with people. It was more me getting whatever information I could to help process that or to help understand my feelings with that. And and one thing that was so helpful was I found a podcast, it was started as being about grief, it was put on by someone who is around my age, and her husband died of the same type of brain cancer that my husband has. And that sounds like a really depressing podcast. But in reality, when she talked about grief, I could totally identify with things that she was saying. And I was like, Oh, my gosh, I’ve been feeling that. But I couldn’t even articulate that. But now that she said this, I’m like, Oh, my gosh, that’s exactly what I’m going through, which was so helpful. But also, it wasn’t just about grief, it was about overcoming difficult things, which we all do. I mean, everyone has to do difficult things, and we all can relate to that. But the fact that she had gone through this very similar situation, and she had turned it into something that helped others in a very meaningful way. I mean, she, she made a meaningful difference in my life, just from listening to a podcast. This is someone I don’t know, it’s called terrible. Thanks for asking, by the way, I think I we talked about that before. Yep, I’ll put it in the show notes, too. That was such a huge support for me, which is kind of funny, because it’s just like a podcast. But that that was really important. And then once I got through that initial phase, where I was like, Alright, I’m ready to emerge from my cave, and like, talk to people about what’s going on, then, you know, having the support of my friends and family was, and having their support was extremely meaningful during that first phase, but I just was I like, couldn’t, I couldn’t bear to like, be around people. But once I kind of reemerged, I have this new sense of gratitude for the support of my friends and family, just because you don’t know how truly committed they are to you until you go through something really bad. And they show up for you in ways that like you would have never expected and it makes you really appreciative of the support that you didn’t even realize. I mean, I knew that I had the support, but I didn’t know that I had
Rachael Burns 53.58
That, that was that was like a life savings thing. The stuff that my family did for me like when I when Rob was first diagnosed, the first call
Rachael Burns 54:22
That I made, one of the first calls was to my brother and I told him what happened. And I just asked if he could take that if he could be in charge of letting people note because I didn’t want to like keep repeating that story. And I didn’t want to be the one that was responsible for like delivering this horrible news to people. I didn’t want to be responsible for that for like changing their life with this. Like because I knew how much it hurt to be on the receiving end of that news that I didn’t want to give it to anyone else. And like my brother took that off of my plate for me and like Did this really horrible task of being in charge of like delivering horrible news to everyone, but he did that for me and, and my mom, like, would just magically drop food off at my house. And she just like, kind of show up and like, leave food and just kind of run away and give me space and like, your people show up for you. It’s like, they know what to do. In times of need, people know what, what to do. So that was pretty amazing. It’s beautiful. I just got goosebumps. I had a feeling you’d make me cry. I debated whether to put on mascara. But luckily, the filter will blurred out. So back to the filter.
Victoria Volk 55:44
It’s so easy to think about how people don’t show up. But I think it’s reminding ourselves of how people do is far more empowering and self loving, really.
Rachael Burns 55:58
And some of the people who don’t show up. Sometimes it’s just because they can’t they don’t have they don’t have the tools or it’s not, I think it’s easy to get your feelings hurt when you don’t get the type of support you’re expecting from someone or whatever. But like, one thing that I realized is people just don’t know what to do. People don’t know what to do in that situation. There’s no manual on like, how to help your friend whose husband was just diagnosed with brain cancer like, no, no one expects you to be an expert in that. But some people can feel like, I don’t know what to do. I don’t I don’t know if I should talk about it. I don’t want to say the wrong thing. I don’t want to do this like, and then they just kind of freak out and just kind of disappear. I think that’s a really common reaction people have and like, I don’t blame anyone for having that reaction. I think it helps to have some realistic expectations of people knowing that they’re not going to know what to do. I don’t I mean, I don’t know what to do. I don’t expect anyone else to know what to do in that type of situation. So, but it does make you extra appreciative of the people who do like, despite the difficulty of the situation, they still show up.
Victoria Volk 57:08
That’s why I love to ask that question like, What are some of the ways that people supported you? Because I think through this podcast, people can learn different ideas, even if they want to be the one to support someone who’s going through a difficult time. You can learn through podcasts to easily support for others. What is one tip that you would share with somebody who’s in the thick of it, maybe like you or maybe not as far as long as you because we’re all at different points, right?
Rachael Burns 57:39
I don’t know how to answer that. I don’t know, I just feel like everyone’s situation is so different. And I am not an expert. I’m barely an expert in my own life. Like I don’t know how to give advice to someone else who’s like going through something a little bit different. But I think just knowing that no matter what you’re going through, it will not always be that hard. Like nothing stays that hard. I can’t I mean, it’s I guess certain things could get worse, but you will survive difficult things. And you will adapt, and you will learn to accept certain things, and you will learn to move forward and it like when you’re in the thick of it. It’s so hard to see, like what it could look like on the other side, but it will get better. It might have to get worse. It may very well could get worse before it gets better, but it will get better. And like, I don’t know, knowing that made me feel like less despair, I guess. Because I was like, Yeah, this is horrible. But this will not always be this way. That’s the only thing I can really like offer in terms of advice.
Victoria Volk 58:12
Well, let’s shift gears to the work that you do then, yes. And talk about give a piece of advice or suggestion that you would give to somebody putting your financial advisor hat on planner with that hat on what would you say.
Rachael Burns 59:14
So if someone is going through a really difficult situation, and there’s some financial decisions that need to be made, or some sort of actions that need to be taken, and that’s something that’s really causing you a lot of stress. I think it helps to understand that you are not expected to be an expert in your finances. There are other things that are more important at that time. And yeah, there are some decisions that have to be made and some things you can’t put off but no one’s expecting you to be superwoman. Like you can get help on anything that you need. And if that’s financial stuff, there is someone who can break that down and tell you Okay, these are the things that you actually we need to worry about the rest of it, don’t worry about it, you’ve got other stuff to deal with. There’s just there’s a lot of support out there. No matter what your issue is, and particularly with the financial stuff, there are so many advisors or other experts out there that specialize in very specific situations. Where, if you are going through divorce, there is a whole industry out there of people who are able to support people going through divorce, or if you have lost your spouse, there are people who specialize in that type of situation. So there’s really specialized support available, whatever you need help with, and I really encourage people to like, be open to help. And it might take a little bit of digging to find the right person to help you. But there’s just so much support available for you. So don’t feel like you have to do everything alone. Don’t feel like oh, I don’t know what I’m doing. Like, you don’t have to do it alone, you can get help. And someone can help make your life a little bit easier. And you should you should take the opportunity to make your life a little bit easier when you can because life is hard. And you don’t need to take on more than you absolutely need to.
Victoria Volk 1:01:19
What do you think is? I mean, I have an idea. But what do you think is one thing that maybe stops people from seeking help? Can then I’ll share my thought on that around finances?
Rachael Burns 1:01:32
Well, with finances specifically, I think people get scared to face face the facts. I think finances are just a very uncomfortable subject for a lot of people. And that’s for a lot of reasons. You know, a lot of people don’t have the knowledge and they feel bad about their lack of financial knowledge. Or they feel bad about decisions that they’ve made in the past with their finances, or they have all this like guilt and shame wrapped around it. And I think with finances, that’s something that you feel like, oh, I can deal with this later and that you put on the backburner, even though it’s really not something that you should put on the backburner because you need to address it as early as you can. But I think just not wanting to deal with it is like the number one block that keeps people from getting it in order.
Victoria Volk 1:02:30
So once your yes shame, the shame, yeah, you feel around their money. Yeah.
Rachael Burns 1:02:37
Yeah, it’s totally understandable. And it’s very, very common, but like, money is just a thing. I mean, it’s, it’s a more complicated thing than that you need it to get a lot of things. But no one is born bad with money. No one is born good with money. If you make a mistake, that doesn’t need to define the rest of your life, you’re not Oh, the person that screwed up and did this, like, you learn as you go along. And it may be it takes you a while to learn it. But it’s not. It’s doable. It’s something that you kind of have to try to remove the emotions from. And just, you know, what, what you’ve done in the past, that stays in the past, you just kind of have to be willing to, to learn, be open to learning and be open to making some changes when necessary. And if that’s how you get over the shame, part of it.
Victoria Volk 1:03:36
Isn’t the root word of currency current. Because I think of if you think of money as like, currency, right? It’s flows, right? Money flows. It’s, it’s an energetic exchange. And that’s really how I’ve had to reshape my thoughts around money is that it’s an energetic exchange. And just like we have shame in our money, we have shame in our grief and how we handle our grief or how we’re not handling our grief. stop us from seeking help, too. Absolutely. There’s a lot of similarities there. But if someone wants to, if I’m in a situation where I had a death of a spouse, or I’m getting divorced, or recently divorced, where can I? Where’s the Where do you recommend I look for resources.
Rachael Burns 1:04:29
I don’t think there’s one place to go get all information on on that type of thing I think it’s going to take it’s going to depend on what’s your preferred way of receiving that information. If you’re someone who likes if you’re someone like me, who likes to listen to podcasts, any information that I absorb, needs to come in the form of a podcast or else I’m not open to it. So if you’re someone like that, there are so many amazing financial podcasts out there that have different focuses, if you’re interested in budgeting, if you’re interested in planning for retirement, if you’re interested in getting out of debt, that’s like my favorite way. But that’s, that’s me. That’s not That’s not everyone’s cup of tea. If you like reading, there’s some, there’s some great websites, there’s, I mean, advisors like me often put out content, they put out blogs, they put out all sorts of stuff. That’s, I think, a good source of information. I think if you go on social media, there’s a lot of helpful information, but there’s a lot of garbage. And there’s a lot of people who claim to be financial experts, but they’re just like social media personalities, you have to be careful where the information is coming from, but there’s no one place to get the information, it really depends on you just have to kind of poke around in your preferred type of media, I suppose.
Victoria Volk 1:05:56
So if I’m listening, and I really resonate with you, and I like your story, and I want to connect with you, where can I find you.
Rachael Burns 1:06:03
So you can visit my website, it’s trueworthfp.com. And I have my blog on there, I have my story on there. And then I also have a link to schedule a free strategy session, which I really encourage people to take me up on. Because even if it’s not a good fit, you will absolutely walk away with some actionable ideas that you can put into place right now. And even if I mean, if it’s not a good fit, I can give people referrals, I can point them in the right direction. I think that’s a good place to start. And then I’m also active on social media. I’m not one of the people who pretends to have the expertise, I actually have some credentials. But I’m on. I’m on Instagram. It’s true worth FP. I’m on LinkedIn, it’s under my name, Rachel V. Burns. Those are some good places to connect with me and chat with me there. And you can read the stuff that I’m pretty active about posting stuff on there. So that’s, that’s where you can find me. And I’ll put all the links in the show notes, too.
Victoria Volk 1:07:10
But is there anything else that you would like to share?
Rachael Burns 1:07:14
I don’t think so. I have thought about a lot of things in the past hour and 20 minutes that I haven’t thought about in a while. And I don’t think there’s any stones that were left on turned. You know what the one thing I will say is going through really difficult times is part of being human. It is like what when I said it in the beginning of the of the episode about feeling like I’m a one percenter like, of course, of course, it’s going to happen to me everything. Like you’re not being singled out by the universe like, this is this stuff happens to everyone, no one is safe from having bad things happen to them. This is just this is just part of the deal of being human. And I think when you look at it that way, you won’t get as angry when you’re going through something because you know, it’s not just you this is just something that happens to people for no good reason. And it also makes you feel kind of united with other people who are going through difficult things. It made me feel like this is something that we all have in common is going through hard times. Like I just I don’t know why, but it made me feel so much more connected with other people in general, just knowing that we all have something that we’re dealing with, and that makes me feel better for some weird reason.
Victoria Volk 1:08:45
Me too, honestly, like when I think about my podcast, it’s grief is the one thing that unites us all it doesn’t discriminate, it doesn’t care. We are who you are where you’re from your background, your age, doesn’t care. Yeah. Well, thank you so much for being here. I will put all of your information in the show notes if anyone wants a financial advisor, planner, and thank you so much for being here.
Rachael Burns 1:09:13
Thank you, Victoria. I really appreciate it.
Victoria Volk 1:09:15
And remember, when you unleash your heart you unleash your life. Much love.
Cancer, Cancer Thriver, Chronic Illness, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Anne Jacobs | 17 Years +++ Metastatic Checkin 2
SHOW NOTES SUMMARY:
Imagine being told you have cancer. But then imagine being told you have cancer for which there was no cure. At that moment, in an instant, life is forever changed. And, although many people hear the words “You have cancer” every single day, fewer hear that the type of cancer they have will, without a doubt, kill them. That is unless a cure is found.
Anne shares, in this follow-up, what hearing those words was like and the thoughts that raced through her mind. We talk about what life has been like since we last recorded, and how she’s doing now.
Anne also shares about what her first distance reiki session was like that she had with me.
I encourage you to listen to her first episode. We dig into different areas of her cancer journey in this episode and, as always, Anne brings lightness to her experience and wisdom to those listening.
If you could only plan your life 2 months at a time, how differently do you think you would plan your days?
RESOURCES:
CONNECT WITH ANNE:
Victoria Volk 0:08
This is Victoria of theunleashedheart.com, and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss. As a 30 plus year griever and advanced Grief Recovery Method specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non Grievers alike, spread hope and inspire compassion toward those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather. Let’s get started. Hello, and welcome, again to grieving voices if you’ve been here before, and if this is your first time listening, thank you for being here. Today, my guest is and Jacobs. And this is actually a follow up episode to just check in and see how she is doing. We had originally recorded in early February of 2020, kind of at the start of COVID-19. And that episode actually didn’t air until April 6. And that episode is called The Road Less Traveled 17 years with triple positive metastatic breast cancer, which Anne has. And so Anne, thank you again for letting me follow up with you in sharing your follow up with my listeners. Thank you for being here.
Anne Jacobs 1:52
Oh, you’re welcome. Again, my honor. To be part of it.
Victoria Volk 1:58
So lots changed for a lot of people since we originally recorded and what I want to give you an opportunity to share really is how COVID impacted you on top of having cancer. And we’ll get into all sorts of good stuff, I’m sure but what is the update that you would like to share?
Anne Jacobs 2:26
Um, well, the the update, which is is good news is that the the current drug that I’m on, it’s called it’s a fairly new drug, it’s called an her to E n h e r t u is is working, which means it’s either keeping my cancer stable or best case scenario is what we call no evidence of disease or no evidence of active disease. And the last PET scan I had showed the cancer that’s in my right lung is stable, which I’m thrilled with because it’s a little bit currently is a little bit more active than my lower spine and my lower spine is is no evidence of active disease, which means the cancer is still there. But when the but the PET scan doesn’t pick up enough uptake to like if you if you went in had a PET scan and you got the same uptake as I did be normal. They you know, they wouldn’t consider anyone else having cancer so, so right now I’m I’m stable, which is wonderful. I always get nervous before my next PET scan, which I’m going to have in August. They call that scan scan xiety Because sometimes you have or sometimes I have a false sense of security that in between scans, oh everything’s okay. And then as you get closer to the next scan, you start to wonder, okay, well what is really going on? And what will the PET scan show? And is the cancer actually more active than than the prior scan? So that it can be a very extreme anxiety or it can be low level nervousness, but either way most I usually experience it so that so cancer wise I’m I’m doing well, I’ve been on treatment every three weeks for the cancer drug and then I also get immunotherapy to help boost my immune system about one to two weeks after my my cancer treatment. So that’s that’s a really good thing. And I’ll stay on in her two as long as it is keeping the cancer Bay. Thankfully, I’ve been here for 17 years doing this, but eventually the drug will stop working and then I’ll get on a new treatment. So that’s sort of another fear is that okay, well What’s next in the pipeline? I’ll probably ask my oncologist at my next appointment, if my next PET scan shows increase, you know, what do you it’s not, you know, a solid decision. But you know, what else is out there? What are my, my options? So, but for right now it’s it’s all it’s good.
Victoria Volk 5:23
It’s so good to hear. So glad for you and your family. I’m sure it’s like a party every time. Good results come back, I’m sure.
Anne Jacobs 5:33
Yeah, it’s, um, well, when I do get the PET scan results, I get them in my online health portal. And actually, I have my husband, read them, I can’t I don’t read them anymore. I used to just, you know, go can’t wait to get the results, read them. And let’s see what it is. But for I’d say for the past two years, I’ll just tell him, okay, the results are in you read them and tell me what they are. Because I’ve asked my oncologist to send them as soon as she gets them. And because I could ask her not to put them in my portal and just wait till my next appointment. But so he’ll read them. And if they’re good, it’s okay. You know, I physically feel myself relax. If they’re not then like, okay, you know, I usually I’ll have a physical reaction one way or the other. And then we’ll tell my kids, and they will react to them. And they’ve been doing it for 17 years as well. And they will be relieved and pumped up. If it’s good news. And if it’s not, then they say, Okay, well, Mom’s gonna go see your oncologist. And they’ll come up with a new plan. And, you know, we’ll go from their, I don’t know, probably someday, I hope it’s not for a long time, might have to have the conversation of well, we’ve done all we can, but I don’t think about that. And I am sure they have it in the back of their mind. But because who wouldn’t, but it’s not something that we we focus on. So it’s kind of like when the PET scan results. Give us like a wave like a wave. It’s not like a big high, high low, kind of in the middle of, okay, yes, it’s good, or no, it’s not. And then, you know, either path, you take either path to, okay, I’m going this way to the left, or going this way to the right.
Victoria Volk 7:33
So you get these wonderful results in the middle of a pandemic. And I’m curious how the pandemic has impacted, really probably your mindset in a lot of ways, I’m sure, or, yeah, I guess, in what ways has the pandemic affected you
Anne Jacobs 7:54
In the in the beginning, I’m not too much, because I have to be careful. Anyway, because my immune systems compromised. So I was wearing masks on airplanes. Before the pandemic, I was washing my hands like crazy. Before the pandemic, I was, you know, doing all that picking and choosing who I could be around when I could be around people, and that kind of thing. But as time went on, I kind of probably joined the rest of the world who wasn’t used to living like that, because I really resented having to wear a mask. I just like as soon as I would walk out of a store, I’d rip the thing off. I didn’t wear my mask outside. Because with my, I have half of a right lung that work. So if I had it on too long, it just affected my breathing. So as soon as I get outside, I just rip the thing off because I just resented another rule that I had to follow that I had no control over. So in that it was a balancing act. Things in our house kind of were the same. My husband is a he works for himself. So he and his assistant works out there their routine, you know, at work, but he got up every day and went to work. So it felt inside the house, it felt normal, but then when I’m home alone, I could I could go out and walk I’d be outside with the dogs, but if I wanted to go anywhere, you know, maybe I couldn’t the things that you know, if I wanted to go lose myself in TJ Maxx, you know, for an hour just looking at stuff. I couldn’t do that. I couldn’t do the things that I would normally use to escape to get back to doing things that maybe regular people do. So that that became pretty hard. And then I finally saw my mom laugh earlier this month and seen her body A year and a half, that was pretty hard. We talked every day, but not being able to know that she could fly out or I could go see her that was actually really hard. Because that was part of my life. She we would see each other 234 times a year, depending on my health and her health. So in some respects, I felt like I was holding my breath, probably like everybody else, and you hunker down and you do what you have to do in other respects. I’m sure. It was like another added layer two of constriction. And so I, I resented that end, I had to figure out, like another way, or a way to deal with another restriction, another thing that I had to conform to health wise, that became a little challenging for me.
Victoria Volk 10:51
Well, unfortunately, things have opened up a little bit. Yes. But it’s this time of recording. And towards the end of June here, it’s kind of sounding ominous, again, a little bit with this other variant. And, yeah, so I guess we’ll all see. Right?
Anne Jacobs 11:12
Yeah. Yeah. And I think, you know, if, you know, if you’ve been through something, you kind of know what, you know, what your experience was, and how you eventually made it, through it, that experience and so you can rely on that information to, you know, prepare you for hopefully, you know, we won’t go through this again. But if we have to, at some level, whether you’re working from home, or you have you know, little little kids at home, or retired or you’ve got parents in a nursing facility, you can lean back on the experience you had and hopefully not make or make life a little bit easier. I guess, you know, we’ll see. But yeah, for for right now. It was when I when I was back in Michigan, they I live in California was back in Michigan, they had lifted the requirement to wear a mask, if you were fully vaccinated. So as soon as I got out of the airport, you have to wear an airport, because it’s the federal regulations and all that and then was with my mom and a doctor’s appointment, you wear it in the common areas, and then in the exam room, you can take it off. But other than that, it was nobody really was wearing a mask, it was just this wonderful, like joyous feeling of awe. You know, we just felt normal again. And then I, when I got back here, just a couple days there to California, is just a couple days later, when they lifted the mask requirement that you know, you’re fully vaccinated. I’ve noticed there’s more people where I live, will wear the mask than than they were in Michigan. But either way, you have the choice, you can wear it or not, you don’t have to. So I don’t.
Victoria Volk 12:58
So what have you found that has been helpful to you living with cancer during a pandemic,
Anne Jacobs 13:05
The thing that kept popping up for me, which, or I should say, percolating to the surface, which means I’ve been thinking about it, or it’s been, I’ve been pushing it down and and then it kind of keeps coming up and up and up is and I felt this for a long time I have, I tend to minimize for myself. Like the smaller losses, which what I consider, I’ll explain in a minute, what I consider to be smaller losses in my life, have three friends whose their, their sons have died to way too early. And one from cancer, one by suicide and one by accidental overmedicating. And that to me, is just admire these women so much. I just don’t know how they go on. But you know, they do. And I look at them, and I say, Okay, well, and just because you, you, you know, your legs hurt today and you can’t walk or all you can do is brush your teeth and go back to bed. But your kids are here, you know, my three sons are here. And so I use that as a as a benchmark. But what I found is that the more that I don’t deal with sometimes I’m even embarrassed to say like, I consider them to be insignificant because the loss of a child I just can’t even imagine. So the rest of it I think, okay, I should be able to deal with this. Because I think God forbid what if I lost a child? Then I would say I would give anything back Yes, I will live with neuropathy in my like from my feet up to my You know, hip bone, I’ll live with that. No problem, I just want my son back, I will live with the fact that, you know, I’m in bed for five days, or, you know, I’m in the hospital for five days with double pneumonia. Like, I could do anything, or I would do anything. And I know they would, too. So it’s this. I don’t know, if you call a push pony, but I had to realize that it’s okay for me to grieve what I consider the smaller losses, like to pay attention to them, and recognize them, they all pile up, and then I become, I’m tired, because I’m not sleeping well. So I have low energy, but at the same time, I’m like, lethargic, I don’t feel like doing anything, I’ll, I can’t concentrate. And if I do concentrate, it takes I have to just pull everything out of me to sit, you know, to do a task, when I get anxious or nervous or depressed. I, I don’t, some people I know, eat my responses not eating. If I allow all these little, what I consider to be little things to pile up, then it becomes this big, huge mess. And then I don’t know where to start. It’s all this stuff in a pot, I pull it out, it’s stuck to everything else. So where do you start and it becomes a little overwhelming. And then I might, you know, react or to emotion when it doesn’t warrant it, like I might become too sad or too angry. And then I know, okay, something else is going on. I really, I have to allow myself to, to pay attention to these little things along the way recognize them into me knowing that they’re they’re not going to go away. And I’ll probably feel the same thing, you know, next month, but if I don’t allow myself that ability to, to touch them to feel them these and I’m talking about the losses, and that’s what it feels like to me. You know, pick it up, hold it right, again, because if they’re like unwanted houseguests, okay, I can’t, this is what I can’t do. But what can I do? That’s sort of been my motto, but sometimes that doesn’t work. And then I know I have to do a little bit more paid more attention to what’s actually happening with me. Instead of saying, Hi, energy, I’m going to do this today. And I’m going to be grateful, I’m going to focus on the joy, I’m going to do something one thing that makes me happy, whether it’s for myself or someone else, you know, I go through my checklist, but then if that doesn’t work, then I know, okay, I’ve really got to, I’ve got to dig a little deeper and allow myself to do that. And it’s my own. I don’t know, comparisons not the right word, but to allow myself to to feel sad or angry that I’m in this situation. And my kids are are okay, and my husband’s Okay. And you know, my family’s. Okay. So that actually has been popping up quite often for the last I would say six months.
Victoria Volk 18:01
I can’t remember when. But it was after we recorded. I offered you a Reiki session. Yeah, you took part in and it was a distance Reiki session, obviously, because you’re in California, and I’m in North Dakota. And what came of that is you had shared with me after that you feel like you need to well, actually what came up during the session, and I told you was that. You need to start painting? Yes. Not knowing that you were a painter. Well, one time you painted that.
Anne Jacobs 18:34
Yeah, yeah. Like today. You look around with it. Yeah.
Victoria Volk 18:37
So have you been painting?
Anne Jacobs 18:40
I did. Actually. I went out and I bought this little, some little watercolors. I just mess around with it. I am not a painter. But so I did. I went out and bought that. And I did for probably about a month and a half. And then life started happening. And yes, that was something that came from the Reiki session. And it felt right. You know, it feels good. I have my I have it all downstairs for I keep some of my craft things. And but I have not done it for the last. I think January maybe because it’s the new year. But I haven’t done it for the last few months. But that does. And I know I’m not saying anything new here because but just to have the brush and you know, stick in the paint, whatever. I don’t even think I just start. It can be just movements of my hand on the paper or, and that’s usually actually what it is. And then I’ll look at it and say okay, well, this looks kind of angry or this looks peaceful. Or I recognize exactly what’s going on. And it’s a way to get it out of my system.
Victoria Volk 19:47
That’s where I was going. Yeah, that’s exactly where I was going to get there. Yeah. No, but that’s where I was going that i You didn’t hadn’t told me that part, but that’s what I was suspecting in what you were saying to about what you were sharing about minimizing. And in just these other losses, these smaller losses that are not small, I’m not minimizing them at all those were your words, but when you’re feeling that way, that might be a wonderful thing to pull out when you’re feeling that way. And maybe even take them outside you know.
Anne Jacobs 20:21
Yeah, that that would be a, that, that would be a good thing. And I was actually I’m headed back to to Michigan for about three weeks. And I was thinking, well, I could, I could take it with me and just have them out, you know, and just walk by, but I can do that at home as well. But yeah, it’s, it’s a good way to, to just either consciously or subconsciously get the feelings out. And I used to, I used to do it a lot. So it was the Reiki session was very sort of eye opening, that you had picked up on that when we had never talked about it before.
Victoria Volk 21:05
Do you like to share more about your experience with that Reiki session?
Anne Jacobs 21:10
Sure. So I had thought about doing one here. Years ago, I had done some research, and I’d found someone and then probably, you know, cancer gotten away, and I couldn’t do it. And then I stopped thinking about so I thought, Okay, we’ll give it a try. And truthfully, like, about how’s this gonna work? Because you’re a nurse, Dakota, I’m here. And, you know, how does the energy you’re not here in the room with me? How does the energy flow? How does this even work? So I was not skeptical, but curious. That will, okay, we’ll just, we’ll see how it goes. But I found that listening to the music, and, you know, knowing you were on the other end, because we didn’t talk for what, like, an hour hour, that that sort of mindful connection, it made a difference. So I kind of in a way I picked I had my eyes closed, you know, as laying down, and I thought, well, Victoria is in North Dakota, but what if she was like right here, and I have my eyes closed, because it’s something you when I get MRI, seguela, when I get MRIs, I close my eyes in the machine, and I just picture okay, my eyes are closed, I’ll just pretend that you know, I’m by a lake or I’m in the river in, you know, near river, it’s usually water. So I do this visualization. So I thought well, alright, yeah, I’ll just pretend you’re here in the room and what how would I be feeling what would that you know, look like anyway. So doing that made for me made this the, I guess, the energy connection. And then afterwards, I was, I felt more focused or in tune to what was, you know, going on with me, I felt a little more, I felt more at peace, a little more energized. Because I felt at peace, I didn’t have the heavyweight of my anxiety or dread, do feel that like as a weight on me, so it felt freeing. So open, and I kept that feeling, probably for a month and a half. And then, you know, real life happens and just kind of piled on again. But I, I found it I thought, Okay, well, this would be a good tool to I have to consciously add this into and make time for this because it was it was more effective, honestly, than I thought it was going to be. But I also realized that the long distance, I had to, like I said, I had to maybe work a little bit harder to make that connection. Because when someone’s in the room with you, you know, you feel their energy, you feel their presence and all that. So I had to just coordinate that with what was happening. And after I did that it, you know, it wasn’t that hard. Because, again, you’re I’m laying down and listening to the music and I’m, I’m kind of doing my work and you were doing your work somewhere between North Dakota and California. They connect him.
Victoria Volk 24:14
Well, that just speaks to the power of the mind. Right. And our intention, and in a Reiki session, there is nothing that anyone needs to do the clients like you there was nothing you would have had to do. Right be open to receive. Right. So you just took it one step further for your own intention. Yeah, but your own intention into it. And that’s, again, I’m just saying like that speaks to the power of intention. And so we can bring that in all areas of our lives.
Anne Jacobs 24:47
Yes, yeah. Yeah, we can because for me to live with intention. It’s a gift because I can’t do it fully as I would like to, but I can do it and Little People So just because of, again, you know, my energy level how I’m feeling and, you know, the other living with this unwanted houseguest have to deal with. And so that I guess, also is part of, you know, when I call some of my smaller losses is to say, Oh, I’d love to do this, but I can’t, I like literally, I can’t physically finish something that I might want to pursue. So I have to do it in little bits and pieces, knowing that I’ll never get to the end result that I might, that I might be able to if I didn’t have cancer, again, it’s and that has actually, that’s, you know, popped up these last few months, because I’ll see people around me doing these wonderful things, you know, you with your, your podcast of the year amazing guests and other friends who are, or they are living with intention. And I know they have their bad days. And I mean, everybody does, but they’re seen through and I know that can’t see something all the way through, I can go partway and enjoy what I can, but then I have to recognize, okay, well, you know, if I can’t, I can’t even think, you know, if I can’t do what XYZ but I can pull up my watercolors and I can, you know just kind of mess around with that for you know, an hour, or I can I can write or I can sit down and write for 15 minutes, which is a participated in a podcast writing with a nonprofit, they help cancer patients and, and, and the woman said, you know, you just for 15 minutes, and you know, she gave us different prompts. And she told us the best way to do it. This is just take 15 minutes, just you know, sit down and write this and come back to it. So I can do these little things in pieces. Would I ever be able to write a book? Yeah, probably not. But I have a real, you know, paint, learn how to really paint, you know, probably not, but this is what I can do. So it’s that balance of recognizing the losses. And then also, I can’t do that, and allow myself the time to grieve it. But yes, I can do this. And so I can live with intention. Not the way I’d love to. But I still can live with intention.
Victoria Volk 27:20
I disagree on that. I disagree on the book writing part of very much disagree on that.
Anne Jacobs 27:25
I don’t know.
Victoria Volk 27:26
I very much disagree. Now speaking of writing, because when we last recorded, we had a came up about writing your children letters. Yeah. Have you gotten back into that? Because I You had said that you had started doing that?
Anne Jacobs 27:42
I did and so I have been I haven’t gotten to the point where I’m writing, you know, life time, you know, I should probably well anyway, I’m sorry. Yes, I’ve been, I’ve been sending them cards, I’ll find a card that I like and then I’ll, I’ll write a note in it. And in I’ll mail it and I don’t do it. Like I could probably do it every day. Maybe like mommy’s lost it so but I’ll even you know, our youngest is he’s in transition for he’s been home for the year for for COVID. Now he’s looking to go back to school. So he’s been loving this as well. I’ll put a letter in the mailbox for him. That just turns around and comes right back. But it’s always fun to get something in the mail. So I have I have been doing that. And then I’ve also been sending them, you know, little texts, here and there. They’re so busy, that the texts have to be super short. I love you or I think you’re amazing, those kinds of things. But I haven’t gotten down to actually do that writing that we’ve that we were talking about where it’s more of a
Victoria Volk 28:50
Lessons from mom.
Anne Jacobs 28:52
Yeah, thank you. Yeah, yeah.
Victoria Volk 28:56
So don’t say I never told you so.
Anne Jacobs 28:59
Yeah. Yeah.
Victoria Volk 29:04
What do you look forward to, for the rest of 2021?
Anne Jacobs 29:08
Well, I take it in, you know, little snapshots. So I leave mid July. And I’ll go back to Michigan for about three weeks. And we have a cottage in northern Michigan. And so Chris and the boys and, and one of my son’s girlfriends, they’re going to come out for the last the last week, I’ll, I’ll be there. They come out maybe four or five, four days after and they stay for a week and then I’ll stay for like another week or so. So I’m looking forward to that and then then we come back and and I get my pet scan. And then you know have the results of that. And that that’s sort of is a go that far out. But beyond that we’re hoping to either go have a family trip to Yosemite or the Grand Canyon. So that’s, you know, out there and then my one of my brothers Is, is doing the Half Ironman back in Michigan. So in September, so I would actually like to, if I can, I’d like to go back for that, again, everything beyond the PET scan is possibilities, I’ve lived with that. So that’s not, you know, for the, thankfully again for the last 17 years, so it’s, that’s not a new feeling. And that’s not a new way of living. For us, it’s like, well, if, you know, if I’m feeling good, then we’ll, we’ll do this, if I’m not, then you know, then we won’t. So we’ve either postponed or had to cross off, you know, many different things to do as a family, but I’m hoping, because I am, I mean, I am feeling pretty good. But um, I’m hoping that we can get those participate in those things. And then comes, you know, Thanksgiving, which is a big boy, you know, they love Thanksgiving, and then there’s Christmas, and, you know, everything in between. So, I always look forward to those times, because I know they’re going to be home, my mom might be able to, to come out. So I have the fissures, the possibilities, and then the maybes, you know, the dangling ones. So that kind of keeps me going. And as you get closer to each one, as soon as I get the PET scan results, then I’ll know what the rest of the year can look like, for me. So it’s like, living in two or three months chunks at a time. I don’t really have the luxury of I can plan, but I don’t know if it’s going to happen, you know, past August, but then again, it goes back to getting myself to the point where I’m okay, you know, focus on my, I know I have to deal with because they keep coming up these these losses, and then, okay, I feel like I’ve got my head above water a little bit and then get back on track with the things that, you know, I can find joy and things I find hopeful. And, and the things I have have gratitude for. So it’s a it’s a little slower process this time around.
Victoria Volk 32:06
Do you know of other women in your area that have that are living with metastatic breast cancer?
Anne Jacobs 32:12
No, not right now. I know women who are living with either currently going through treatment or have gone through treatment that they’re not staged for, they might be one, two or three, but I’m in a Facebook group with metastatic breast cancer Facebook group. And that that is that is, is pretty helpful. Because I can if I’m when I need to get on and read I can, I can comment I can interact, or I can just sit back and read other people’s comments, that seems to that helps a lot everyone posts on there, you know, good news, bad news and in between, and you will get so much support. And it’s you know, it’s heartfelt support that you can feel through, you know, the computer like you can with the Reiki, you feel that through the, you know, the headphones, and that. So that, to me is pretty helpful. And you’re talking with women who are going through the same thing, they might not have the same cancer characteristics, and they might be on different drugs, but the issues are usually the same.
Victoria Volk 33:20
Yeah, I was just wondering if there was anyone close to you? Maybe even in that group?
Anne Jacobs 33:26
Um, there probably is. In the past, I’ve said, Yeah, let’s meet for coffee or something that didn’t happen. So right now, I don’t feel a strong need. But it might be in the future. You know, I never never say never to make that connection. I know, it’s I know, it’s there course there’s gonna there’s going to be women, you know, around me or within like, an hour two hour drive, that, you know, you could go meet the Bay Area. There’s a gal I know, she’s, she’s been dealing with metastatic cancer, she lives in Southern California, she’s very active. And I used to see her more often, just because of different things would bring us together. Now. I you know, you interact through the Facebook group, but you know, if I needed to, I could pick up the phone and call or you know, and talk. So that’s always available.
Victoria Volk 34:20
And I think there’s just I mean, it’s a good thing to have people who really get what you’re going through. Right. And so just that you have that support there. Yeah, of people who really do get it. Yeah, he’s I can’t I still can’t wrap my head around 17 years like I When is your 18th anniversary
Anne Jacobs 34:44
Next year. So it was actually July of 2004. And my kids were little, my youngest was had just turned four. We were in at our cottage in Michigan and my back started hurting, I thought, oh, you know, I’m running around in the water and I’m picking kids up and moving and you know, all that. So I tweaked my back. So I got a massage. And it seemed to help but the pain didn’t really go away. And then it became pretty acute. So, you know, I ended up, I came back and I asked my oncologist, you know, told him what’s going on? And he said, Oh, it’s probably sciatic nerve. So he, we got an x ray system, like, right below, you know, my lower spine and off to the right. It came back clear. And then probably a month or so went by, and I called my primary care physician and said, you know, had this backache, it’s not going away. So he x rayed from my waist down, and you know, boom, that’s the cancer showed up in my lower spine and in my left hip, and so I didn’t get officially diagnosed, you know, for months, probably till October. And then I didn’t start treatment until maybe November, December. But I look back on I know, the cancer was there in July. It just, I hadn’t got it diagnosed yet. So I was used. July is my the month. So 18 years will be next year in July. Wow, that’s examinable. Maybe I can be I’ll come back and in July of next year, and we will see how it’s gone.
Victoria Volk 36:31
I would love to have you. That’d be great.
Anne Jacobs 36:36
Yeah, and it’s, you know, I wouldn’t, I would never expect anyone I would never expect you to, it’s too hard to wrap your head around, like, what does it look like to look to live with this? Or, you know, any sort of cancer? You know, what is the day? What do you do through the every day?
Victoria Volk 36:53
Ride the roller coaster?
Anne Jacobs 36:55
Yeah, yeah And it’s, um, it is pretty hard to understand. Unless you live through it. And I wouldn’t want anyone to have to understand it. But 1000s of women who are, you know, doing this every day, you know, you wake up one morning, just what you have, you know, you have cancer, okay. And it’s not never going away. Oh, okay. And, you know, depending on your life experiences and what you’ve how you’ve handled things in the past that will influence you moving forward. And when I got diagnosed, initially, I had this alright, let’s, you know, stage three, we’ll beat it, we’ll go through chemo, there’s a start, and there’s an end date, I’ve got this. And then you get the call. No, it spread, you know, I had no comprehension, I didn’t know where to put my feet down. This was something that I had never encountered before. So I had a friend help me sort of navigate and get get a second opinion. And you go from that to a third opinion. Go back to your oncologist, you make a plan. So it’s just like moving forward without a map doing the best you can. So that’s led me to here. I’ve learned a lot along the way. But pretty amazing. I’m pretty grateful, very humbled by the fact that I’m still here. Very, very grateful.
Victoria Volk 38:15
I love that you’re here. And I love that our paths have crossed, and we will continue to do these follow ups. As long as appreciate it long as my podcast exists.
Anne Jacobs 38:28
Well, you’ve had like, lived to earlier, you’ve had some pretty amazing guests. I was thinking, Why? Why is Victoria want to talk to me? These other people are just there. I haven’t gotten through all of your podcasts yet. Because I’ll sometimes I’ll go back and I’ll re listen to, you know, some of them. Oh, what did he or she say? But just you’ve had some really? Some really impactful conversations.
Victoria Volk 38:55
Oh, there’s so many more to come. I bet. Yeah. I bet. Is there anything else you’d like to share today?
Anne Jacobs 39:03
I can’t think of anything, except I guess to reiterate, what I’m I’m learning or I’m allowing myself to just deal with the, again, what I consider the smaller losses so that I can have a more peaceful existence to do find what works for you and allow yourself you know, if you have that should I should do this, or I should do that. When those shoulds come up too much. I need to really pay attention because then I’m not doing what is best for me to be the best version of myself and allow myself to push the shoulds away and the judgment therefore I have on myself and just focus on if I do this, I’m going to feel better. I’ll be a better version. I’ll be a better mom, wife, friend. I’ll be a better and be a better person for myself too.
Victoria Volk 39:54
That’s perfect. And we will end it there because I think that’s perfect.
Anne Jacobs 39:57
Thank you. Thank you again Victoria,
Victoria Volk 40:01
Thank you for being here and for being you and sharing all that you’re learning along the way. I appreciate you, folks. And remember, when you unleash your heart, you unleash your life. Much love from my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting, know that what you’re feeling is normal and natural. Much love my friend.