 Welcome to Town Meeting TV. I'm here today with an incredibly special guest, Marge Berthel. Marge, hi. Hi, and you said that how we got to know each other over the years with me doing my shows, and we became friends, and sometimes we'd go like to Starbucks for coffee and other places, and the shows were very important, because it's an important message. It's that amount of health systems being unhelpful, being helpful, and you see, sometimes they didn't, I don't know why they didn't know that they were helpful, or they were stuck in their way, a certain way, instead of being helpful. Do you want to mention something about that? Yeah, so the title of your show is What's Not Working in Mental Health Systems and Other Organizations. And remember, you mentioned like a set way that some people, you want to mention about the set way that sometimes people do things? Well, something that I learned from you is this idea of getting the help you need, not the help that people give you. And that's one thing that I've learned from you is that from your experience of having to be an advocate for yourself over the years, through your experiences with organizations in Vermont and mental health organizations, is that sometimes people have systems set up that they think are helpful for people, but it's not the help that they really need or that they really want. And they have a certain set way. And they have a certain set way of doing that. So what's your experience been with that, Marge? Well, first, I want you to address that one question that I was going to say more about. You want to say, sure. Yeah, so one of the things that happens when you're not getting the help that you need is that you can become further and further stressed and be pushed into a point of crisis. And sometimes that crisis can result in serious health consequences that you suffer from because you're not getting the help that you really need. And so one of the things that you were asking is what do we have to wait until things are a crisis to address and to give people the help that they need? In 1983, when I collapsed on the sidewalk and I almost died before they took it seriously, and then in 2011, they said, you need nica-grisserin to continue to live. And then this last year, well, in December of 2022 and then 2023, January and February, I fell and didn't know it and went to the hospital. They said they did not think it was a stroke. They thought it was a seizure, but they didn't think it was a stroke, didn't know. They thought it was a seizure, didn't know. But they were giving me seizure medicine to prevent the seizures. And I have to think about these very serious health consequences because if I went too far where there weren't people outside or inside and I fell and I could die, because at a coffee hour at Grandway, if I fell, someone would call right away like they did call when I asked them to or when I was unconscious and blacked out they did or when I came to and asked them to, they did. But if I fell out on some sidewalk somewhere, and no one was around on South Prospect Parkway, I might end up dying. And they said that I should never go to the emergency room unless you call SSTA. Or you call 911, but if 911 won't take you, you have to wait till the next day. You know, it's like you don't want to go outside and fall and have no one there and die from some seizure or something and have no one know. And so I didn't have to think about seizures and falling before, which I do now. And like from stress, because stress contributed, and I asked the doctors, did it contribute? They said yes, and they said it might have been the whole thing, but at least didn't help it. And then recovering from burnout, will I ever recover? And I have some help that's helpful because some people listen and undertake it seriously, respond and help right away. Some people don't, they might not ever, maybe someday they will or after years some did, and some still don't. But some did right away, they always did. And it's like, do you think that, and when I had several hundred misunderstandings, I couldn't resolve it alone for Vermont systems. And having help by getting my message out like TV shows and other people that helped me that I found to help me, helped me. You're an advocate for yourself, but you're part of a network of advocates who work on behalf of folks who need help. But I feel that my message will not just help me, it will help other people, but it isn't something to do alone because solving it or being responsible for alone is too much. And you need lots of backing and help and support. And I felt despair when I didn't feel like I was having enough help, but I'm feeling like I'm having more help and more of enough help. I still could use some more because it's an enormous project. But the fact that I have some help. And when we talk about you needing help, talk about what kind of help is helpful for you, Marge. To be taken seriously, responded to, and listened to, having it happen right away, I don't have to explain and explain and explain to some of these people in Vermont systems that don't get it and don't listen or take it seriously. Some of your experience in those Vermont systems has been misunderstandings, but some of that experience has actually been more than not helpful but traumatic. That's right. And that, do you want to talk about that at all? Well, when I wasn't listened to or taken seriously, and so that's when we get to the point, does somebody have to collapse on a sidewalk to be taken seriously? They should be taken seriously without that. And they should be taken, you know, when I'm saying like, you don't just sit there and say, well, you haven't collapsed on a sidewalk yet, so we can't help you. That's not how it should be. They should say, what can I do to be of help? And it's like at Grandwood. It's very helpful there and where I live and people are, you know, always say, what can I do to be of help? And, you know, if the Vermont systems were like that, other systems, you know, where I went to for the day, I don't go there for the day anymore, but basically... Are there other organizations that are helpful to you? Vermont Disability Rights, Vermont Legal Aid, and those are helpful. And then Friends and Family, and then my health providers, they're learning how, like my primary care and the other doctors that I go to for physical health conditions, you know, they've learned how, but they're like right away. And well, like the health providers at Grandway right away or the health providers at primary care, what is it, University Health Network where your other doctors are? And you might have some doctors outside of that, or some medical people outside of that, but, you know, I feel like they're helpful. It's not like when I used to go to a day program in the Vermont system, which I don't, is that I felt like I wasn't understood or listened to, so I stopped, but it's like... What does it feel like? What is it like for you when you are listened to and understood? It felt terrible. When you are? Oh, I thought you said when you weren't. I know, yeah. That's what I thought you said? No. I misunderstood. Well, what does it feel like? Can I say I misunderstood? Yeah, I do. I hear you, yeah. When I'm understood and taken seriously, it feels great, and it feels great when it happens right away. And I thought you were saying when you aren't misunderstood and listened to, that's what I thought you said, but that's not what you said. Nope. I said, what does it feel like when you are understood or listened to? It feels wonderful. Yeah. And especially when it happens right away. Yeah. And sometimes it's a work in progress, but sometimes it's not a work in progress. Sometimes it happens right away. Yeah. And what... Did you know it feels great? That's awesome. I do know. I love when I feel misunderstood, not when I feel misunderstood, when I feel understood. And I think I... Do you feel like that happens a lot to you in your life? Do you feel well-understood? I feel, yes I do, but since there were so many people that I came across in my life, like in the Vermont systems, there's hundreds, thousands, and millions, most of the people understood, but there were a certain few that didn't that spoiled it for me. Because you know, if I went to a day program and there were all you need is a certain few that don't listen or misunderstood or take it seriously, that can spoil a program. You know, I mean, that's all you need. I mean, because you know, if you see it especially, let's say they're there every day. And they're suggesting that all these things that aren't working for you, they're saying, well, you know, this is what I feel you should do. And I'm saying, well, that's not working for me. And they're not listening to me. And so then I just... So then I finally said, well, goodbye. And you know, kind of what I'm saying, or do you? I do. So you have... Do you want to tell people a little bit about who you are and how they can learn more about your story? Well, how can they... If they want to... How can they watch... How can they get the TV tapes? Well, you've produced a bunch of programs here at Tom Meeting TV, and you've also produced a movie with Nora Jacobson called Tremors in the System. And both of those are available if you go to CCTV.org and you do a search for... You can use Marge's last name, Bertold, or Marge Bertold, and you'll see all of the programs that Marge has produced. Who are some of the people you've interviewed? Well, did you know that basically if they get in touch with you, your phone thing says it's blocked? Oh. Yeah, my phone has a lot of messages on it. Yeah. Well, I thought that one with Lindsay was good. Yeah, you did a program with Lindsay Owens for Disability Rights for Mott. Didn't you think that was good? Yeah, it's great. I thought it was really good. What did you think? I thought that was a great introduction. She's the new executive director at Disability Rights for Mott. And didn't you think it was good? Yeah. I feel good. I thought it was great. And I thought you were... I'm sending it to that person that's planning to change mental health systems. Did you send it to him? Who is that person? Well, I don't... Find me. I don't know him, but you mentioned him. Marge, you have a better memory than I, and I do not remember this conversation. I know, but isn't there somebody, you know somebody that's planning to change him, right? To change... You said listen to people's stories. Yeah, maybe. I'll have to look into that. I know, but you don't remember that person? I don't remember. Well, you said there's this person that's listening to people's stories, that wants to change the systems, and you said you sent them... Yeah, it sounds familiar. And you said... Give me a little bit to think about it, and I'll see what I can remember. And then you said you... I asked if you could send the interview of Lindsey, and you said you could. Yep. I do remember now, and I did send that. That was somebody who is working. There's a new human rights panel. There's a new human rights panel that's listening to the stories of Vermonters who have suffered trauma inside of our institutions. So just like you suffered trauma inside the Vermont Mental Health, the Vermont Mental Hospital. And what about the Vermont Mental Health System day treatment programs? Yeah. What I'm talking about, that you go to for the day, and I stopped it because it was traumatic. But what I'm saying is I want them to know that the day programs are very traumatic, too. You know, I want... I mean, that is a very important message and point that did you know that they're extremely devastating? Or did you know? I didn't know. I mean, other than what you've said about them. Well, you knew before today, or didn't you? Well, because I've heard you talk about it, so I know your experience with those. But you knew before today? Yes. Didn't you know for a long time, or didn't you? Probably, yeah. Well, I've told you many times before today, so don't you remember them? Yep. If you've told me about it, I would remember it, yes. Well, I have many times, so don't you remember? I do remember. And can that guy or whoever it was you sent it to, if you can look up that person that you sent it to, because it would be helpful to me to know... To know if he's seen them, yeah. Yeah, and you can't, you don't remember? Well, what about that Human Rights Council? Why can't you look up that? That's the person that I'm thinking of, who's on the Human Rights Council, and so I did send that, and I'll follow up with him. Is there anything more that you want to talk about on the show today, because we're still on the TV? Well, is there anything else that you think that we should... Well, do you think you've covered the issue? Well, if Megan comes as my guest to a coffee hour at Grand Way and talks about Channel 17, my shows, or other shows, if people want to know them, and what she does, but she'd want to call me and make sure I was going to be there if she comes as my guest, but that would be something very helpful, and so I don't... I'm just mentioning that, and should I explain what that is? Well, you can, and you could explain it to me. What I'm saying is other people might not know what that is. They have a coffee hour on the first floor at Grand Way during the week. It's for residents. For residents, you know, Monday through Friday at 3 o'clock. There's not a lot of people that go now, but... Maybe this can be a public service announcement for folks who are watching this from Grand Way. Do you know that you have a coffee hour five days a week from 3 to 5 o'clock, and Marge and I did a presentation there probably a year or more ago about the programs and why you produce the programs. Yeah, but I'm saying that you could come and talk more about it sometime. But if you're coming as my guest, you'd want to make sure I was going to be there? Yeah, well, I think I would want to be there as your guest. I've enjoyed being there with other residents, too. I know, but if you were going to come as my guest specifically, wouldn't you want to make sure that I was there? Absolutely. But what I'm saying is it's not just to talk to me, it's to talk to other people. In fact, it's a chance to talk to other people that don't know about Channel 17. Yeah, although we're now Town Meeting TV. We've lost the name Channel 17, remember? We're no longer just Town Meeting TV. I know, but okay, but what I'm saying is Town Meeting TV. But what I'm saying is people that don't know about it, you would get to meet people, get to know them, but tell them about what you do. Well, we're doing it right now. This is the kind of thing that we're doing. The Town Meeting TV, we're doing it, but I'm saying I don't know if that many people are going to watch this. Maybe. It depends on how many people we send it to and how we share it. Correct. Marge, do you want to say anything more to viewers who are watching now before we say goodbye, or is it time to just say goodbye? Well, I think we've covered a lot. It's up to you. I'm asking you, do you think we've covered a lot? I think we've covered a lot. I think we've covered the idea of getting the help you need before you are suffering the consequences of not getting that help, and that sometimes the help you need is not. What's the phrase sometimes the help you need is not the help that's given. That's right. Thank you for the people that are listening. Yeah, thanks for watching, and keep tuning into Town Meeting TV for more programming. Thanks, Marge.