The Rupture of Grief And What Happens When Systems Fail You

Grief isn’t just emotional. It’s structural.

In this episode, Suzanne Barbetta shares the story of losing her husband to cancer at 45. But what follows is something rarely discussed. The collapse of the systems around her.

Healthcare. Insurance. Financial stability. Social identity.

With no roadmap and no support, Suzanne was forced to build her own system to survive.

This is a conversation about what grief actually looks like. And what happens when everything you depend on stops working.

🔔 Subscribe now for more conversations about rupture, systems, and lived experience.

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Transcript

SPEAKER_02 0:00

Welcome back to Rupture, the world of Beskesistan. I'm Wendy Lurie. Grief is a different kind of rupture. It's not systems breaking, it's life breaking. And everything that follows has to be reorganized around that loss. That's what my conversation with Susie Barbetta is about. And here's that conversation. Susie is a neighbor, a friend, and was a previous guest when she came on the show to talk about her TBI. But the TBI was not her first rupture. And she's here today to talk about a very different rupture, the rupture of grief. And when Susie tells you the story, I'm pretty sure you'll react the way I did. You can feel the rupture. You can see the system's failures. And in what I think is one of the most interesting and inspiring aspects of her story, when the systems didn't uh seem to be available to her, she built her own because she knew what she needed and she figured out how to get it, which is the load transfer part of the equation we talk about all the time. But I really appreciated Susie's willingness to come on and tell this story. And thank you for coming back to Rupture, Susie. It's good to see you.

SPEAKER_00 1:26

You're quite welcome.

SPEAKER_02 1:28

So let's start. The floor is yours.

SPEAKER_00 1:30

Okay. My husband was diagnosed with a specific form of colorectal cancer in December of 2006. He went through chemo and radiation. He had a lot of issues with the treatment. It should have gone on for six to eight weeks. It went on for several months. They had to keep starting and stopping the process. So he suffered for a long time with the after effects of those things. And we were trying to get our life back to normal and back on a, you know, like an even keel. And he kept me kind of away from and outside of that process. He wanted to handle the cancer, his doctors, the appointments. He wanted to handle it all himself, which is why I presented him one day with a list to go and talk to his radiation oncologists. And the top of it said, this is a list from my wife of questions. So we got through that. And by the summer of 2008, we went on a bucket lips list trip that we'd always wanted to go to Alaska. He had a lot of back problems, but he'd had back problems before. There was no reason to think there was anything sinister about it. We came home and he had what I can only describe as some kind of weird attack. He was laying up in bed and he let a scream out of him, went right through me. I went running upstairs and he was in so much pain and it was his back. I called our chiropractor and he said, Susie, listen, I don't think this is anything I can help him with. I think he's got to go to your regular GP and get some tests done. So that's what we did. And that was in late June. The number of tests, the last test, the final test was a bronchoscopy. And he looked at the doctor, the pulmonary doctor, and he said, You got one job. Your job is to come out of here and tell me I do not have lung cancer. And that is exactly what he had. He had small cell lung cancer, which, unlike his mom's lung cancer, which was large cell, that there were a lot of different treatments potentially for it. It's not as well researched. So we I put on my researcher and advocate hat. We went back to the original oncologist because that, and this was small cell. We went back to his original radiation oncologist. And the radiation oncologist was very eeyore-ish about the whole thing and said, Look, Frank, there's really not much I can do for you. It the only way you're gonna get better, really, is through chemotherapy. So we went back to the chemical oncologist and he said this can be managed, which struck me as weird. But I was like, okay. By the time I got through the research, I realized that what he was saying was, we can't really cure this. Like it doesn't have a good outcome. But he couldn't bring himself to say that. So we uh went through this. It started, we were supposed to start chemotherapy in August through a family member of his. We were able to get him into Sloan Kettering for a second opinion. And that ended up being slightly disastrous because the the doctor there was younger, obviously a researcher. I wanted to talk to him about clinical trials because the outcome for the gold standard that the original oncologist was talking about wasn't good. Like it just wasn't good. And so he said we can talk about clinical trials, but he made it clear that Sloan Kettering wasn't gonna play second fiddle. In the meantime, Frank had been on all these painkillers for the amount of pain he was in, and it caused like bowel blockage. We ended up having to put him into Sloan Kettering for bowel rest while they tried to get him better from that and then start the chemo. And when I called my insurance company, which at the time was Oxford before United had completely merged with them, he made clear the technician on the line made it clear to me that if we started Frank's chemo at Sloan Kettering, even if we went back and all of the rest of the treatments were done at his oncologist's office, they would charge us as if it were out of network for all the rates that Sloan Kettering had. And I kind of flipped out on the guy on the phone and I said, wait a minute, wait a minute, wait a minute. I said, Look, my husband is hopefully only going to be here for a few days, but it's imperative that we start this treatment as soon as possible. I said, Do you understand that what you're saying to me is we have to wait until he gets out? I said, It's the same, it's the same two chemotherapy drugs. It doesn't make any difference who actually gives it to him. The guy was shamed, but said, Look, this is I don't have control over this. There's nothing I can do. Tried to reach a supervisor. No go. It didn't matter. There was nothing, they could not be moved.

SPEAKER_02 7:08

Was this the insurance company making the decision?

SPEAKER_00 7:11

Yes. And that and they said, look, you can have you can have him start the chemo there, but every uh every additional treatment he does, even if it's the same drug, you're gonna be charged MSK out of network rates. Which was the last conversation I wanted to have with him, right? With Frank. So I told him this and I said, instead of starting the treatment when you're in the hospital, if you really want to go back to the other doctor, the New Jersey doctor, then we should start the treatment there. Like, why start the treatment there if we're gonna be billed for it, if you really want to be treated by the other doctor? So that was difficult. He started the treatment. He really only lasted, he lasted nine months. We started treatment in August. He died at the end of April. The path of it was horrific because he started the chemo and it hit his brain in January, which was really scary because it was affecting him visually and auditorially. And I was running around like on this hamster wheel trying to give him the best food. Can he work with a personal trainer? Is there anything we can do to strengthen him for all these toxic chemicals that he was going to be exposed to? And my parents came riding down like the cavalry from New Hampshire to stay with us while this was going on in January, and they were able to kind of beat it back again. So he had a first, I wouldn't he never reached a remission state in November. It was a lot of the cancer in his lungs appeared to be gone, but it didn't matter because it was kind of all over everywhere. But and the between the end of November and January, it hit his brain.

SPEAKER_02 9:06

So you guys are like in your 40s, right?

SPEAKER_00 9:09

I was 45 when Frank died. He was 48. He was just two weeks away from his 49th birthday. Yes. And so the thing is, you know, from my perspective, his first cancer was almost like a year and a half, two years earlier. And they treated it very aggressively because he was so young and he said, look, this cancer has really good outcomes. And but from my perspective, that treatment weakened him so horribly and left him open for the small cell, which was, they stressed, a completely different kind of cancer. It opened the door for it. Okay. It opened the door.

SPEAKER_02 9:51

They're not connected though. I mean, that's one of the things we learn the deeper we get into healthcare is that everything is connected.

SPEAKER_00 9:56

Right. And that's why you'll find even when children who have leukemia are treated successfully for leukemia when they're very young, it is not at all unusual for them to develop a completely different kind of cancer in their 20s. Like it's it's what happens, right?

unknown 10:11

Yeah.

SPEAKER_00 10:12

So the thing that was really hard was the communication between the oncologist. I mean, for the brain, we did go back to the radiation oncologist. That was something he could help with. And that was how we beat back that, at least temporarily. But most of the rest of it was just the regular chemotherapy and all of the horrible side effects that that brought with it. What really made me crazy was I couldn't get anybody to help me understand what we should expect as he continued to fail.

SPEAKER_02 10:47

The ontologists weren't telling you the not really.

SPEAKER_00 10:50

No. Like we were in the doctor's office, and he like burst into tears. This was not Frank, right? He was like a big burly guys guy, right? And very good emotional range. He was an actor also, so he had access to his emotions, but he wasn't this was not his demeanor. And the oncologist, who was freaking clueless, kind of poked fun at him when he was in this really vulnerable moment. And I was sitting there thinking, this is the worst possible thing you could do. And he finally explained to him, Frank, it's the steroids. It's the steroids that are making you this emotional. So it's like the doctor made fun of him? Yeah. Yeah. He he was like, oh, you know, you're just ugly and da da da. Like he, you know what I mean? Like I do. And normally, you know, when guys rank on each other's, there's that testosterone. Sure. But that's under different circumstances. This was not that, this was not that, right? So he had additional testing in March, and I was trying to go to work. I was the only, I mean, Frank had tried to work early in his treatment. At one point, we even I even traveled with him so that he could try and do his job. He was a salesman. He would go to retail stores and try to sell him all this stuff, them, all of these different lines that he carried. By March, he said to me, I just feel weak. I feel weak. And he was increasingly having a hard time. He fell. I kept trying to catch him. His brother would try to, he was like 240 pounds. I weighed like 125 then, right? And it got to the point we actually had to have our local EMS help him out of the house down the front stoop to get him into the car because Michael and I could not get him into the car. So by the end of March, March 25th, he calls me at work and he's like, I don't even know how to tell you this. He's like, it's really bad. You have to come home. They got me a car to go home. And it was so strange. He was like cleaning out the car and like trying to act like it was normal. And it was very, it was very weird. And he explained to me that the the latest round of test results were very bad. But was keeping you out of everything at this point? No, I I was still, for the most part, I was going to the appointments with him, but for the test, I didn't go. And so, because I was also, I I, I didn't have, I had health, our health insurance was through me, but I was technically part-time, even though I was working close to 40 hours a week and I was trying to do this at the same time. I had no sick time. I had no, like, if I didn't work, I didn't get paid. So what happened was he basically went from a cane to a walker to a wheelchair in like a week and a half, two weeks because it was eating his spine. So by the time he died, he was essentially a like a quadriplegic because everything just started to disintegrate. So he died, he came home to in-home hospice, and this was the other thing. That last trip to the hospital that was so bad, he didn't understand where he was. The chemical oncologist refused to come to the hospital to see him. And he got me on the phone and he's like, There's this really great hospice. I'm on the board. You know, Frank will get the best care. And I was like, Well, will you be there? He's like, No, no, no, no. I I I'm on the board, but he's like, I will have eyes and ears there. And I'm like, You don't seem to understand. Frank wants to talk to you. He wants to see you. His radiation oncologist came to see him. And that and they said to me, Look, there's nothing else we can do. It's hospice. The only question is whether it's going to be at home or in a facility. And when I tried to talk to him about that, he's like, You want to put me in a place? I'm going to be around people I don't know. And he was also having a hard time understanding. Like he was trying to convince the nurses there was one of those triangle things above the bed. He was trying to convince them that he was going to be able to pull himself up and walk out of the hospital. Magical thinking, magical thinking. And so his brother finally got through to him and said, Frank, he's not coming. The doctor's not coming. He's not coming to talk to you. He said, Mike, give me the phone. He gets on the phone. And the doctor tells him he's not going to come see him. And that he has to go into hospice. And Frank finally bullies him into giving him some kind of timeline. And he finally grudgingly said, maybe a month. So we get home. Hospice less than two weeks. And then like once that happened, everything changed. Everything changed. Because it was not just the emotional upheaval. Frank was my only serious boyfriend relationship. Since I'd known him since I was like 21, 22. I was 45, right? The idea that we were suddenly that he wasn't going to be there and that this was all I was going to get was shocking. I felt cheated. I was angry. I was also in a panic. Yeah. And I and I also like I felt like I had a personality transplant. So when I'm going through stressful times, I tend to characterize people through Winnie the Pooh.

SPEAKER_02 16:42

I know. I know that's your frame as Winnie.

SPEAKER_00 16:43

And so I was always like the bouncy tigger with this weird cross of, you know, bossy rabbit sometimes. Okay.

SPEAKER_01 16:54

Yeah.

SPEAKER_00 16:54

When Frank died, I suddenly became pignet, piglet, and I couldn't figure out what was happening. Like I would be so sloppy. I wouldn't lock doors. I would I paid no attention to these things. After he died, I was running around maniacally checking the house, the doors, the windows. Somebody was gonna come to check on a broken window. And I staged the house because I thought, you know, if they think if if if this guy is some weirdo, if he thinks there's a man still here, I'll be safe. Which is like, I never in my life, when Frank was on a trip and I we were having a plumbing issue, he didn't want me to call the plumber until he was home. And I was like, you don't get a vote at this point. You're not gonna be home for four days. I need to get this fixed. So that was like his thinking. So it was like his tape in my head of my own safety. And I guess that was it. Like I didn't feel safe anywhere. And if I spent any time away from the house, I started to worry about it. Like, was the house okay with the house gonna, which was weird, right? So there was that. My finances were disaster because Frank was good at so many things, but he was very bad with money. And that he died in April of 2009, which was the middle of the housing crash. So if I had tried to sell the house then, we would have been upside down. And I couldn't afford to write anybody a check for the house. That like could not happen. So I had he had he sold all these different collections and collectibles. But the thing about being a salesman is you're a good salesman, usually you're also a good customer. And he collected tons and tons of different things. So my I had a basement that was filled with rubber-made tubs of sports cars and chotchcas and collectibles. I mean, we used to have garage sales every couple of years with all the samples of all the different lines that he was selling as he got new samples in. So I had a two-car garage that was filled with stuff and all the stuff in the basement. And I was making like 40 to 45k a year at that point. And I had a 300K mortgage. I was never meant to carry that house by myself.

SPEAKER_02 19:13

No. Did you know that all of this stuff was in the basement? Like, did you know how much of this stuff he was?

SPEAKER_00 19:17

So here's the thing: I knew certain things were there. We had a lot of Christmas stuff, but Frank was always getting samples and things in, either from prospective lines who were trying to get him to be a salesman for them, or new things that he had to show, like the beach reps, the beach stores on Long Island and South Jersey and stuff like that. So we had this constant influx of things in and out. I knew that some of the collections existed, and some I didn't. And some I didn't find until after he was already gone. And I remember I had friends that came to help me, and we're we were going through the basement, and I opened up another tub to see a completely different collection of Department 56. You know, the little Christmas villages. He had started a complete other collection from our own personal personal collection of Disney Department 56 that I didn't even know existed, that he never told me about. And I started screaming, Frank, if you weren't already dead, I'd kill you. Like I was out of my mind because I couldn't figure out what was I gonna do with all this stuff. How was I gonna how was I gonna stay in the house? The life insurance w did not cover me buying the house. So I figured that once the life insurance came in, it would literally give me five years in the house, five years before it would run out. So I had that amount of time to figure out if I could turn things around and manage to get out of the house before I had to replace the roof, which was gonna cost, you know, 15,000, however many dollars.

SPEAKER_02 21:00

Given everything you found out as soon as as Frank passed and you had all this financial stuff to deal with, did you have time to grieve?

SPEAKER_00 21:08

So I did I did, but I think it was hard for people who saw me in real life, like the people at work and even my friends, because I was so guarded and locked up about what I had to do and all the lists I had to make. I met a friend who had recently become divorced. We got on the subway and we were supposed to go to dinner, and I I think I've lost my umbrella, which was one of the things that Frank used to berry. I was constantly losing umbrellas every single time. It was like umbrellas and sunglasses, right?

SPEAKER_02 21:47

And pens.

SPEAKER_00 21:48

Yeah. And and I literally lost it on the subway. And like we had gone through dinner, and Justin and I had been talking, and I just Just fell apart. And he said to me, it turned out I did have the umbrella. And it was like the last umbrella that Frank had bought for me. Which is a stupid thing to get upset about. But on the other hand, it was the last umbrella Frank had gotten given to me, right? And all of a sudden, Dustin said, I'm he's like, You're okay. Because I was almost hyperventilating. He's like, You're okay. And he said, I have to tell you, he's like, I don't mean this meanly, but he's like, You were so pulled together, I couldn't understand how you were being so pulled together all through dinner. So it was like, I think he was trying to reorient himself because I was so locked down. And that happened to me a number of times where, you know, I had somebody say to me, like, I don't think you've cried enough because I was so, but I was in survival mode.

unknown 22:52

Right.

SPEAKER_00 22:52

So I had a couple of outlets. I had a very dear friend from my theater company who, in the fall, when Frank was under treatment, walked me into Gilda's Club and said, We're going to go through the orientation. There's a support group here for caregivers. You'll be able to come here every week. There's other activities, which of course I didn't have time for any other activities. That was it. I mean, my family was up in New Hampshire. They weren't going to be able to help. His family was well-meaning, and they would he had two brothers that would take him back and forth to his chemo treatments, but in terms of hands-on help, not helpful really. So I went there and though those group sessions, oh my God, because everybody in the room got it. Okay. So it was there. And once Frank died, they moved me from Caregiver into the bereavement group. I stayed in that group almost two years. And part of the reason why I need to do that is because, you know, I was 45. Most of the other people around me are peer group, and I had younger friends. I tended to have younger friends. Nobody had gone through this or was going through this. I didn't, nobody had a frame of reference. Nobody knew what to say. Some of them were dealing with their own mortality in the face of his and weren't emotionally really equipped because they they were putting it in their own context. And I mean, you know, look, it's hard. It's really hard. So I had that, and a partner in my law firm had, he had, we had a woman who went through breast cancer. She was one, she and one of my partners sued Blue Cross Blue Shield to get bone marrow transplant covered. And she used cancer care. And John said to me, You should call cancer care. And I said to them, look, I can't come in again, but somebody stressed to me I should have like one-on-one counseling in addition to the group because of the insanity. They broke their own rules and allowed me to do phone sessions. I would do phone sessions from work once a week to try and help me because in my support group, many, most of the people were older than me. There were a couple of people that had lost spouses. One had a glioblastoma and they had young kids. We had a couple of people like that, but there were a lot more people that were a lot older than me. And it made it really difficult. And frankly, in day-to-day life, like people are uncomfortable and they don't know how to talk about it and there's no vocabulary. And I had somebody when I went back to work, it was like two to three weeks after Frank died. One of the secretaries in my office, she's like, Oh, I'm gonna leave a book for you. And she said, you know, you know, I, you know, you should look into online dating because you're still young. Like it wasn't right for me when I went through this. She had a fiance who died when she was young. But, you know, you should do this. And I looked at her, like, Frank hadn't been dead more than two months at this point. I could not even concede. And the book that she left me was written by a medium, some famous medium on Long Island. She's like, you know, so if you want to talk to Frank. And I'm like, if I want to talk to Frank, I know how to talk to Frank. I don't need somebody else to do it. I mean, I think.

SPEAKER_02 26:30

That's nuts. That's nuts.

SPEAKER_00 26:31

Yes. So, you know, and the thing is, m people are really well-meaning, like they they don't know what to say. So sometimes they say the most the most insane things. Like, my my best friend grabbed me right after Frank died, and she said, Listen to me, people are gonna say some really stupid shit to you. And you have to remember they don't mean it badly.

unknown 26:59

Right.

SPEAKER_00 26:59

But get ready for it, that's it comes. And I I had to think of that repeatedly.

SPEAKER_01 27:04

Yeah.

SPEAKER_00 27:05

So, you know, there were always offers of like, how do we help you? Can we help you? And I kept saying to people, I need to figure out how you can help, I will come back to you. So because I'd done paralegal work, I knew I could index and catalog these collectibles. My idea was if I could manage between the garage and the basement to put together like somewhere between 10 and 15K, that would blunt the amount of money I was having to take from the life insurance to stay in the house, right?

SPEAKER_02 27:38

Yep.

SPEAKER_00 27:39

And so I we had finishing work on the kitchen that had never been done after the major renovation. And the tech director at the theater company came to see my house and he's like, you know, I have a friend that can help you. He charged me very little and he did all this finishing work for me. I couldn't take any more time off of work because my office had given me an advance when I couldn't work, so that I had some money coming in that last month and a half. And so, or month, I guess, before I went back to work and I had to start paying that back. So I had another friend who house sat while this guy came and fixed all these things. I had other friends that would come out on a weekend. I'm like, okay, we're gonna today we're gonna work on the lighthouse collection and we're gonna, you know, and I had to research the pricing, and then I had to try to find people to help me sell it. But then there was the other stuff, like the nuts and bolts stuff, like calling for credit cards. And there was this thing that I had heard when I was really well, you know, you can't tell people that your spouse died because they'll freeze everything. You won't have access to your money. So I was scared to do some of those things. And some of them, like I waited until I was able to do other things so that I could have stuff in line before I did it. So, but when I called the insurance agent and I said to him, you know, I need to get the insurance money for this, he didn't have the number. He needed me to give him the policy number, because whatever, he'd change offices. And then he said to me, you know, he's like, What not now? But when you're ready, I have a nice little annuity that you can put this in. And I said, annuity.

SPEAKER_02 29:23

Wait, he was trying to sell you a product while you were calling for the life insurance because your husband had just passed?

SPEAKER_00 29:28

And I said to him, Annuity. It was that selling. I said, You don't understand. I'm trying to figure out how I'm gonna stay in my house. And he said, Well, don't you work? So the insurance company was fine, went the it was the broker was just a jerk. Okay. It came right through. But then when it came, a friend had stayed with me overnight. And when I opened the mailbox as she was getting ready to leave, I saw that it was a check from the insurance company. And I kind of lost all the color on my face. And she's like, Susie, it's okay. I'm like, it's not okay. I'm like, this is blood money. I what am I gonna do with this? I can't do anything with this. I and she's like, Susie, the insurance is exactly what you need. She's like, if if you cannot touch it, that would be best, but you have to put it in the bank. I mean How long did you wait? How long? I want to say it was almost two months. Actually, no, maybe maybe it was the end of May or sometime in June. The bookkeeper at my office kept asking me, Did you deposit that check? And I said no. And I mean, I kind of freaked out because, you know, the paperwork was insane. It looked like if somebody threw up a paper monster in my living room, and then I I had kept the check in the safe, and I thought I lost the check. I called my boss, the administrator, and I was like hyperventilating, and she managed to talk me down. And of course I did find it. It was there. Of course it was there. It was just buried under all the other paper that that I, you know, I and yet to many people, it looked like I was fine.

SPEAKER_01 31:13

Yeah.

SPEAKER_00 31:14

And I had an I had one of the attorneys at work. Her husband was an estate and trust attorney. There was a really big credit card bill. I knew I was gonna be up, wasn't gonna be able to pay, but it was like 16K. It was in Frank's name alone. And the credit card company was trying to get me to change it into my name to pay it. And once she put in him in touch with me, I said, I don't know what to do about this. He's like, sit down, take a pen. I'm gonna give you all the language you're gonna use when you speak to them. Because he's like, the bottom line is you you absolutely do not put the credit card in your name.

SPEAKER_02 31:53

Then you take on that debt.

SPEAKER_00 31:55

Exactly. Which is of course what they wanted. Of course. And with the language and the verbiage that he gave me, I was able to cut the amount in half. So I paid them $8,000 instead of 16. I temporarily bother borrowed the money from a sister-in-law and her husband so that I could pay them. And then when the life insurance came through, eventually I, you know, kind of replenished that money. But, you know, Lori finally said to me, Bring the check. We're gonna go to ATT, we're gonna, because the phones were primarily in his name, we walked into ATT and she's like, after we do this, we'll go, we'll just deposit the check.

unknown 32:44

Yeah.

SPEAKER_00 32:44

And the guy at ATT, I explained and I said, I have the death certificate here. And he's like, okay, there's gonna be an $18 transfer free. My friend, who's from the Bronx, flipped out. What do you mean? Her husband died, and you're gonna charge her this. I mean, it was epic, I gotta say. And I'm from Jersey, so when I say it's epic, it's epic. Everybody in the store turned around. She managed to get have him get me some water, and the fee was waived, and I was able to change, you know, because we had been I had been paying the bills all that time. You know, this had to be several months after he died because I had continued paying the bills, right? So then we went to my credit union to deposit the check, and I was literally shaking. And she said to me, You look like you're gonna pass out. She's like, We're gonna go sit down after we do this. And I don't, I mean, she walked me in there and practically held my hand for me to do it because it seemed like almost a betrayal to do it, which intellectually, I know that's insane. But on the other hand, emotional, not intellectual. The, you know, the the you know, if I could get him back, I would gladly give that up. Like, what are we what are we talking about here? So, you know, there were things like that that continually happened. So there were the unexpected helpers, the neighbor who was going through when Frank had his first gout of cancer. They he and Manny were going through cancer at the same time. Manny ended up being really helpful when Frank became very hard to move when he was still in the house. He mowed my lawn for me. I mean, uh the front stoop went, and I didn't think I was gonna be able to, that was gonna be thousands of dollars. The original contractor had done a lousy job and there were frost heaves, and I was afraid that the mailman was gonna sue me because he was gonna fall. And I got a neighbor who I used to live next to who I knew was also a contractor. And when he showed up at the house and I came out of the house and he's like, oh my God, he's like, It's you. He's like, Debbie said your name. And he said, I didn't, I didn't make the connection. And he said, Yeah, this is a really bad job. He's like, Listen, I'm not gonna charge you anything for this, but you can't tell anybody I did it, because if the guy that did it finds out I did it, it could be trouble for me. And I said, I will say nothing. He saved me like two or three thousand dollars, right? Amazing.

SPEAKER_02 35:23

So I just stop here for one second. Yeah. I just want to make sure, I just want to make sure I'm pulling out of this some of the because this everything about your story is unbelievable. So, like if you just talk about the rupture point of view, right? I mean, obviously losing Frank is a huge emotional rupture, like nothing. But it was also a financial rupture. Yes. It was also a lifestyle rupture. Yes. And then when when we were talking and just listening to you now, when you talk about the the systems failures, insurance doesn't we there was an insurance problem, right, with who's paying for what.

SPEAKER_00 35:56

No, it was just a broker. It was just the broker.

SPEAKER_02 35:59

Well, there was a broker who wanted to sell you something. Right. But I'm talking about the Sloan Kettering, who who covers that was an insurance. That may not have been the worst systems fail, but that was one.

SPEAKER_00 36:09

That was health insurance.

SPEAKER_02 36:10

That was health insurance, so there was a failure there. I think, frankly, the fact that you had no sick leave and all that is also a systems failure, not of your firm, but of our country for not providing this report. Absolutely. You had medical systems failures, which I want you to talk about, and definitely financial systems and identity systems. I mean, who you were a different person. The person you described was a different person than you were before.

SPEAKER_00 36:32

It was Frank and Susie.

SPEAKER_02 36:33

It was Frank and Susie, and now it's just Susie.

SPEAKER_00 36:35

Yeah.

SPEAKER_02 36:36

So which of those systems was the hardest for you?

SPEAKER_00 36:39

So in terms of the hardest, emotionally, I would say it was identity because the toilet on the first floor went on the fritz, and I couldn't figure out how to shut the wall. The valve was frozen, I couldn't turn it off. So I asked my next door neighbor if her husband came over. She made her young son come with her husband to my house because suddenly I wasn't married. You were the widow barbetto? I'm telling you, people got weird. And because my status had changed. Like in my head, my status hadn't changed. It wasn't until I saw the weird reactions from other people, and I was like, I finally was thinking to myself, you know what? You can just relax because I'm I knew I know your husband. I don't want him. Like you are in no danger at all. So that was weird. It's so strange though. And into even in terms of friendships, like there were friends that only knew us as a couple. There were friends that knew him first. And so those dynamics all change. So while I'm trying to get my feet under me and deal with the financial stuff, that was hard. In terms of stress, the medical system failures were the worse because you felt like you couldn't get your feet under you. So, like when Frank was on all those painkillers, nobody told us that he had to really seriously increase his water intake, or he could end up in the hospital with practically like a bowel obstruction because of how severely they impact you. Nobody thought to tell us he'd never been on drugs like that before. What did we know, right? The fact that the guy at Sloan Kettering was insulted that he might play second fiddle and treated my husband like he was a specimen in a petri dish. And the oncologist in New Jersey was like, I've been pe treating patients since he was 12 years old. Who is he?

SPEAKER_02 38:48

So you have a big dick swinging contest going on.

SPEAKER_00 38:51

Yes. And I'm like, guys, this is not about you. This is not about you. And so, you know, it and and then when hospice happened, you know, I had an idea of what hospice was in my head because my mom had friends up in New Hampshire that had hospice and she'd spoken so highly of it. Some of them were in facilities, she'd gone to visit them, and it seemed like a really like in a way, an affirming way to ease yourself out, right?

SPEAKER_01 39:23

Yeah.

SPEAKER_00 39:23

Everything about this felt very violent, okay? From the doctor who happens to be on the board in the hospice, wanting us to try to g put him in that hospice. That was the chemical oncologist, and that being sketchy, to the our lady of, you know, perpetual incompetence, the hospice organization, not giving us the support we needed. They're like, well, look, you know, this is not 24-7. Like, I had to figure out how to turn Frank, who was 247 pounds, to try and change him once he was in the house. Do you see what I'm saying? The bed they gave him was too narrow for him. Like he was a big guy, and they didn't want to change the bed. So Frank called. We'd be gotten very friendly with the guy who was in charge of EMS at Lyndhurst. He's like, Eric, I'm in the back of the ambulance, and I, you know, we need to get back up the front stoop. These guys, they don't know what they're doing, there weren't enough of them to help him get him up the stairs. So he came. We got the approval to change the bed so that he would have a better fitting bed. And the woman, that woman, I still remember her saying, Well, who's gonna switch him out? Like, we're not gonna do that. So the day that my parents came down from New Hampshire, they're in the living room, they're sitting on the couch watching what we used to call the three three ring circus. Like I described it, this people, it sounded insane. The EMS came with a couple of cops, and they picked Frank up, got the first bed out, and put the first while the hospice people stood around.

SPEAKER_02 41:07

What a broken system. Yeah.

SPEAKER_00 41:09

And the other thing was like, I actually had a couple of like the people that came when I was trying to figure out how to change them and how to deal with that. One of them said to me, Okay. She put it, she's like, you can always call if it's an emergency and you're having problems. So in other words, they couldn't have people there. They couldn't have people there more often than they had them or longer than they had them. But I could always call. And I was like, emergency. What the hell are we doing here? Like, what are we doing? This was not the way things happened in the hospice that my mom was familiar with up in New Hampshire. I couldn't understand what was happening. And then I had the counselor connected with the hospice tell me that Oxford was refusing to give them any more money for, I can't even remember what it was. Like there was the prescriptions that had to come and all this other stuff. So I went back to the third party that kind of oversees the 401ks, all the different benefits, and I talked to this guy, and he's like, Are you telling me that this person made some claim? And I'm like, look, I'm caught in the middle here. I'm just trying to understand how this works. So he explained how it works. When you're assigned to hospice, this is the way it was under Oxford when this happened in 2008, 2009, they're fronted a certain amount of money. And within that money, it's supposed to be used for whatever services there are. If that money is gone, like it does, they don't care. Like so, I guess I need to be thankful that he was only alive another two and a half weeks. Cause frankly, like I don't know what we would have done. And then, oh, this was the other thing. The priest, he was like, Well, in terms of last rights, I said, Well, you're on call. I said, Things are bad, but I said, I don't know. This was like the last weekend he was alive. And he's like, Well, I'm gonna be with my family, so then I'm not gonna be available. And I'm like, but you're the on call priest. I was like, so what's your definition of on call? I mean, by the time I got off the phone there, I did like a three-minute comedy routine for my in-laws in the who I call the outlaws in my kitchen and my parents because I was so like, what's your definition of on call? Like, I can't predict.

SPEAKER_02 43:43

Right.

SPEAKER_00 43:43

So my mom and my one of my brother in laws, I think, went to a local church, Mount Lady of Carmel, and they came and they gave Frank last rights. Because the on call guy, well He was only going to be on call up to a certain point. So I would say the the unexpected the there there was no coordination. There was no and you think by the time somebody is in hospice, like everybody would be on the same page, right?

SPEAKER_02 44:17

You would. You would.

SPEAKER_00 44:19

But but the whole trajectory of this whole thing from the oncologist not really being honest, like, what do you mean you're gonna manage it? What he should have said, what he should have said was most people don't really last a full year. In fact, technically it's nine months with small cells. And that's just about the amount of time that Frank lasted. And that would have helped set expectations. Yes. Well the planning. And the other thing was his progression and how it was eating his spine, if they had said to me, look, you're not going to be able to handle him because he's going to be in a wheelchair probably very shortly. And there's going to be further, there could be further, like if they had at least given us like a some kind of a plan or a potential, it's like, well, if it affects his spine, these are all the things that could go wrong. And I realize, like, for some people, that's not good. But for me, the unknown in my head is so much worse than you telling me. Because then I can make a plan. I can make arrangements. I can have people around. I can like maybe there were additional things we could do. There was no time for that. No. There was no time. And it didn't have to be that way. That wasn't sudden. Well, this and this is the thing. It caused tremendous stress to Frank. We were, before he went into hospice, we had he he was too scared to go up and down the stairs because his back felt weak and he didn't understand what was happening. And we were afraid he was going to fall. We got a big airbed, we put it in the living room, and we were laying on it. And then he had fallen and I had tried to stop him. So of course I had bruises like everywhere at that point. And he said to me, Listen to me. If I start to fall, just let me go. And I looked at him and I said, Frank, here's what I'm going to tell you. There is no way that I'm going to ever just let you fall. And he's like, But you're, I'm too big. I said, I don't care. I how could I possibly? I said, so you just need to like get that out of your head right now. Could you imagine? Like your husband's a big guy. Like, and it wouldn't matter because if he started to fall, of course you'd try to catch him. He's your husband. What are we talking about?

SPEAKER_02 46:49

I want to ask you a final question because this actually ends where we where I started your intro. Because I meant what I said in the intro about how like listening to you when we were talking and then just sort of processing it, I realized you built your own system. You found the people you need because the systems didn't exist, right? Right. So if you could just talk for a minute or two about like how, you know, what you did, that whole thing that we were talking about in terms of figuring out what the needs are, finding the right people, but you built that entire thing from nothing. Trevor Burrus, Jr.

SPEAKER_00 47:17

Right. So what I tried to do was who do I know that could maybe deal with the woodwork and things that needed to be repaired in the house? I know that's not a skill set I have. I can't really afford to hire a contractor, a regular contractor, a big contractor. And that's why I reached out to the tech director of the theater company, which one of my friends said, Well, maybe Patrick can help you. And that ended up being very little money. And then I was like, who can help me go through these collections? Who do I know? I mean, Frank had tried to pre-arrange the guy that he used to do sell comics and cards with, his friend who had moved to the Carolinas. He tried to arrange for him to be the person, excuse me, to work with me on that. And when I contacted him, he only wanted to deal with the big money cards and he wanted to do everything on the phone. And I said, You just don't understand the scale of what I'm dealing with here. Like this is not possible. So I contacted a bunch of eBay companies who all said, you know, well, you can do it, but you have to give us an index and you have to take the pictures, and then we'll take like 50%. I eventually looked and looked and looked and found a vendor in New Hampshire Vermont or New Hampshire, Vermont, that that would take, like on a sliding scale, all the different tchotchkis that we had rather than just a straight 50%. And we did it on a I I got up there with a friend of mine, like she helped drive me with two car loads of two different times of all these collectibles because this was the guy, and it took him two years to go through it. I found a local, I started figuring out, I had some big unopened boxes of cards that had to be mint because they hadn't even been opened. So I called some big card dealers and said, What if I gave you the 2005, you know, top set of yada yada? I said, This is the book value, the box had never even opened. So he gave me a figure. I walked in with my parents to a local card shop and I said, This is what I've got. Do you have the money to give it to me? If not, I'll just go to these guys in upstate New York. And he's like, No, I I can do that. And I didn't tell him all the stuff I had. Initially, I was like, Well, I have other stuff, but I said, let's see how this so eventually it took him nine months because he packaged the crappy stuff with the good stuff and had all different kinds of people all over the place. Now, I never could have done that on my own. I had to sit down and think, what do I need here? Do I need a body in place because I can't be here? Is it I know I can do indexing? Can some can somebody else help me with that? So that while while they're doing descriptions, I'm researching prices so we can try and get it done. I have spreadsheets still of like all the different stuff we sold. It was insane. And I did eventually make like I think 10 to somewhere like 10 to 12K out of that that I was able to replenish out of the money that I had taken from the life insurance, so that that money was enough when I finally was able to sell the house. Like I kept having realtors come in. Finally, my yoga teacher, her husband, was a realtor, a local realtor, not a franchise realtor. And I said to him, if you're telling me, because these other guys, they were gonna lowball me or whatever, if you tell me that it's really worth $380 or $379, then I'll pay you X percent. But for every drop, I'll pay you this percent and this percent. And he agreed to it because he didn't have to ask anybody else because he had his own shop.

SPEAKER_01 51:18

Right.

SPEAKER_00 51:18

So, yes, I, you know, I called people like who can do this? And I tapped friends and said, Do you know anybody who did to do this? The first year, the bookkeeper at work, well, this is the other thing, the taxes, because Frank had his own business. I didn't, he all always did that stuff. My book, the bookkeeper at work helped me with that. And then eventually somebody else got me a real accountant so that I could continue on from there. Because this was out of my league in terms of that. So I had to really sit and think through what do I need? Is it a body? Is it some area of expertise or knowledge? And who do I know or who might they know? Like with the cards, I went through so many different people. I'd send them the spreadsheet and they'd be like, whoa, I can't, I don't know. So I think since this all happened, there have been times and I have run into people that either have been widowed or it's in some cases an adult child, and I have said to them the same thing like people are going to ask you what you need. Your j first job is to say to them, I don't know what I need right now. And depending on your circumstances, what you need might be very different from what I needed. But then start to go through your like your contact list of people that you know in your life that you know will help you and that mean you know ill, and that you can trust with helping you do what maybe you don't have the knowledge to do. Because that's really what it comes down to, right?

SPEAKER_02 52:56

It it does. But also that that advice, because we were talking about it before, like people don't know what to say, right? But to say to someone, I don't know what I need, but when I do, I'll be in touch. Yes. And I I I think it's actually really helpful because one of the things that's come up on a lot of in a lot of these conversations is you know, we're very quick to say what people shouldn't say to us, to any of us going through these difficult things, but it's harder to say what we what people should say.

SPEAKER_00 53:18

Yes.

SPEAKER_02 53:19

Right? And a lot of people have asked that. And I think what you're saying in terms of saying, I don't know what I need yet. Once I know what I need, I'll be in touch, is actually a really clean, humane way of doing it.

SPEAKER_00 53:30

Yeah.

SPEAKER_02 53:31

And I I just want to thank you for sharing the story because I think it's instructive in so many ways. I think there's just so many, so much important insight in this. I think a lot of people will benefit from it. I hope so. I hope so too. But I just want to thank you so much for coming on and and sharing this and telling us about Frank and your lives and everything. And we'll talk more, but thank you.

SPEAKER_00 53:53

Thank you. My pleasure.

SPEAKER_02 53:57

Thanks for joining us for this week's episode of Rupture, the world of Best Guess Stan. Today's episode featured Susie Barbetta, and we talked about the rupture of grief. If this episode resonated with you, or you know someone who could benefit from it, please consider sharing it with them so they may find our community. And to support our work, you can like, comment, share, subscribe, or join us at bestguessistan.com. Bring us your rupture. Bring us your systems failure. We'd love to hear your story.