Mistrust: A National Crisis

In this conversation, Brandy Schantz and Helen Perry explore the pervasive issue of mistrust in military medicine and its implications for veterans and the broader American public. They discuss the factors contributing to this mistrust, including media influence, personal experiences with healthcare, and the disconnect between policy and reality. The importance of transparency, advocacy, and community support is emphasized as essential elements in rebuilding trust and improving healthcare outcomes for veterans. The conversation highlights the need for institutional accountability and the role of lived experiences in shaping perceptions and driving change.

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Transcript

Brandy Schantz (00:01.09)
Welcome to Living Chronic, I'm Brandi Shantz and I'm here with Helen Perry. We are doing our special series, Military Medicine and the Mission Left Behind. Today, we're going to capstone this entire series by talking about mistrust. We've talked a little bit about it up to this point. We've talked a lot about what can lead to mistrust, problems within the system, defunding, cutting funding, all of these things.

So I think today a really good topic to discuss is that mistrust and how we regain trust, particularly because this is not just a military and veteran problem. This is a U.S. problem. So we have a lot to talk about in relation to that. So thank you for being on the series, Helen. This has been a really great series. I've enjoyed doing it.

Helen P (00:52.404)
Yeah, this has been awesome. It's all things that I talk about all the time anyways, so.

Brandy Schantz (00:54.582)
You know, exactly, you know, I do this podcast just trying to share some of the things that I've learned, continue learning from so many, you know, great experts and fellow patients and caregivers and all these things. But yeah, you know, being, you know, a veteran myself, you know, my husband's retired army. You know, these things are so important to us and, you know, it's the stuff that really hits home.

Helen P (01:23.038)
Right. Yeah, absolutely.

Brandy Schantz (01:23.18)
because it affects us every day.

So what's interesting when we talk about mistrust, we talk about this a little bit. You know, we're seeing so much mistrust and you see a lot of military and veterans skipping medicine, going to supplements. Some of them may be good, some of them may be harmful. You know, this isn't just a military or veteran problem. So this conversation is something that's very pertinent to every American because there's no shortage of polls showing that Americans in general lack trust in their institutions.

They lack trust and expertise. So this isn't, know, I think 30 years ago, I remember if you said, you know, well, this doctor said, you would say, well, if the doctor said it, then it must be true. you know, even, you know, I remember growing up in a military family, my father was Navy. And, you know, if somebody came to you and was also military, a higher rank, you thought, well, you know, they're clearly looking out for me, but.

Helen P (02:08.32)
rate.

Brandy Schantz (02:24.622)
It feels like this mistrust has made its way into every aspect of life today. There's no trust for anyone or anything. There's no inherent trust for an expert or for a particular institution, whether public or private. And this is really affecting the military veterans and just Americans in general and how we proceed with our lives and how we go about

making our institutions stronger, which I believe is the way forward. can't survive as a nation if we can't make our institutions that we depend upon stronger. I right?

Helen P (03:02.898)
Yeah, I mean, I think there's it's been so interesting to watch sort of.

like the different components of this like all come together. Whether it's like the anti-science movements, which then leads to mistrust and conspiracy and like all these things. Or just sort of the conspiracy, you know, there's all these different conspiracy theories out there. Unless like some of them are like very legit, you know, like you can go and like look up like some of these things and be like, yeah, Operation Paperclip was like a real thing. Operation Popeye for cloud seating was a real

Brandy Schantz (03:31.778)
yeah.

Yeah.

Helen P (03:37.768)
real thing in Vietnam. These things do exist.

Brandy Schantz (03:40.002)
Yeah.

Helen P (03:42.048)
But there's sort of like different facets of it, of how people all kind of funnel into the mistrust area. I think it, know, one of the things that sticks out recently in my mind is the lack of protections for basic Americans, right? So if you're not a millionaire, if you're not a politician, if you're not famous, your ability to access protections for the government is really quite limited.

and say you're taxed wrong or a company fraudulently takes your money or things like that. It used to be that the government worked for you and you could go to them and say, hey, this is wrong. This is not how we do things. now, especially with the invent of media, those are always stories, people being wronged and injustices, that gets funneled to the front. And then people see that and they're like, yeah.

it snowballs this mistrust and all of these things. And then people just, I mean that just goes and goes and goes and goes. And especially, I think right now with the VA, one of the things that I have really noticed is that a lot of the media that has been put out, there's been some really good stories that come out about like,

Brandy Schantz (04:50.894)
Mm-hmm.

Helen P (05:04.367)
reportedly positive changes that the VA is making, things that I would at face value be like, absolutely, I support that. However, I will say that in my experience as an advocate, as a patient, as a caregiver, that my lived experience is not matching with what's being reported. And I think that is where a lot of mistrust is growing.

Brandy Schantz (05:11.426)
Yeah.

Brandy Schantz (05:24.365)
Right.

Helen P (05:30.314)
People are seeing these reports and they're like, well, that ain't my experience. you know, there was one, I just saw a large veteran community yesterday put up a post on social media that said, you know, the VA is abs, there is no evidence to support that the VA is putting a cap on mental health services. You know, and it was this big article, right? And like every comment that hundreds of comments.

Brandy Schantz (05:34.52)
Right.

Brandy Schantz (05:50.766)
Right, I remember that article.

Helen P (05:58.378)
going down the line was basically saying, this is not my experience, this is happening to me directly, this is BS, this is a lie.

And this was like a major news outlet that is like reporting this. And so it's one of those things where like, I keep telling people, I'm like, you know, if something feels in contrast to your lived experience, the thing that you know to be true, like then you should question that thing, you know? And I've seen, you know, you can get into the conspiracies also about like, why is the media doing this? You know, why are they reporting these things, right? And like, you can talk about propaganda. You can talk about, you know,

all of these things, I also think that, there's like significant, again, this goes into like my own conspiracy, right? As like, there's significant evidence to support that like foreign nations are also contributing to like a lot of these online forums where a lot of these like snowball conspiracies. Yeah, and I think it's, you know, it's one of those things, absolutely.

Brandy Schantz (06:58.061)
Oh no, yeah, that's 100 % true, yes, yeah. No, that's absolutely true.

Media really can be the best weapon. You can kill a person with a gun, but kill an entire population's trust in their government, that's where you get what you need as a foreign government. When you're, as military officers, as army officers, we know, mean, war is what we study. You're a warrior, you're a scholar, right? And so we talk about how many people things need to be blown up killed before war ends.

Helen P (07:12.298)
Yeah.

Exactly.

Helen P (07:32.33)
Right.

Brandy Schantz (07:32.428)
You you think about some of the major wars we've had, know, World War II was ended by an atomic bomb. What did we gain from that? What was our interest? What did we do? Now, when you can wage a war without having to kill the people, but kill the ideas, that's a very big thing. And yet it is, it's, of course they're doing it. I mean, why wouldn't they? And it doesn't contribute to any trust when you are

Helen P (07:37.79)
Right? But it's not... Yeah.

Helen P (07:48.138)
the art of war.

Helen P (07:52.308)
Yeah.

Helen P (07:57.674)
Yeah.

Brandy Schantz (08:02.189)
blatantly lying, I was one of those people because I was getting mental health care by the VA and I was given a cap and my therapist said that we only have X number of sessions since so, you what do you want to get out of these last three? We only have three left. And oh, by the way, during this time period, this was the same time period we talked about a few episodes ago when I had the cops called and sent to my house because I was, you know, I was just delirious, you know.

Helen P (08:09.642)
Yeah.

Helen P (08:23.691)
Yeah.

Helen P (08:27.818)
Yeah.

Brandy Schantz (08:27.845)
I was in so much pain because they weren't getting my medicines to me, right? But they were, so they were worried about me committing suicide because I wasn't so much pain, but they were still, you know, exactly, well, we don't want, you know, we don't want that to happen, but you know, still we can't get your medicine. But no more than 18 sessions or whatever it was, I can't remember. So yeah, I mean, that's blatant lying. think at some point you, you know, some things are just not transparent, right? So.

Helen P (08:30.634)
great.

Helen P (08:34.902)
Well, because that would look bad on the paper, you know? that's, and that's how, exactly. But we're not gonna offer you the support that you need, but also, yeah.

Helen P (08:55.562)
Yeah.

Brandy Schantz (08:56.789)
I think one of the bigger things we've seen, and this has affected military and veteran communities, largely we talk about the vaccine, the vaccine, right, COVID. So I was one of the people who did have a reaction to the vaccine and I got my second dose. And what I was already going through, drug-induced lupus and now know as POTS became much, much worse. And that's when I lost my ability to walk. Now, you know, it took forever to get through. We all know my story.

Helen P (09:04.596)
Yeah.

Brandy Schantz (09:25.643)
but there's people with that story over and over and over again. So when you tell them the vaccine's 100 % safe, they're not gonna believe you. So is it safe for most people? Yes. Is it safe for everybody? No, but again, that transparency goes a long way because when you just keep saying, it's safe, no, it's safe, and people have very indisputable reactions, they're just not gonna trust you. They're just not gonna trust you, don't lie.

Helen P (09:30.964)
Yeah. Yeah.

Yeah, yeah.

Helen P (09:47.52)
Yep.

Yeah, and it's so hard too because

You know, on the public health side, mess, you know, I worked the first round of COVID. I worked in a refugee camp. I was working with refugee populations. We created all of, you know, we were in contact with the CDC. Like that was a whole that was a whole experience. And it was just so funny because I was like, listen, guys, if you just read some books about like what happened in like the 1915 Spanish flu pandemic, like you will see that like there was a lot of mistrust then like these there there were so many

Brandy Schantz (09:59.438)
Mm.

Brandy Schantz (10:15.501)
Mm-hmm.

Brandy Schantz (10:21.153)
Yeah, lot of parallels.

Helen P (10:22.12)
of like maybe we should just learn some lessons of like things that happened in the past and like do it a little bit better. And one of the things was, you everybody was like, people are just not smart enough to understand. And I was like, they're smarter than you think they are. And they can also, you know, they can also smell the BS, right? Like if you're, like nothing in this world is a hundred percent safe. Literally nothing, not the air you breathe, not the water you drink, not the food you eat, like literally nothing.

Brandy Schantz (10:25.964)
Yes.

Brandy Schantz (10:36.108)
Yeah.

Brandy Schantz (10:42.028)
Yes.

Brandy Schantz (10:45.429)
No, nothing.

Brandy Schantz (10:51.659)
Living has risk.

Helen P (10:51.8)
to tell us exactly, and to tell people these things. And then it just, like you said, it breeds mistrust, right? Like a little zest pool, because oh, well if they're lying to me about this, what else are they lying about?

Brandy Schantz (11:01.675)
Yeah. What else is out there? Yeah.

Helen P (11:04.934)
And in the veteran population, will also say one of the challenges that we have is that you get, I have met so many, I call them vet bros. This like, vet bro, I was special up, and I'm like, that's amazing for you. Yeah, like, right?

Brandy Schantz (11:23.383)
my God. Do they have their cargo pants on with 700 pockets at all times? And yeah. Yeah.

Helen P (11:28.086)
the patches, you know, like the the this we will defend stickers, I mean like it's Yeah

Brandy Schantz (11:34.165)
I was special forces ergo, I'm an expert in everything. All the things, you know.

Helen P (11:38.405)
everything. Yeah. I mean, like these guys will be like, I spent, you know, six months in Kuwait. I'm like, that's amazing. Like, thank you for your service, you know, but it's you, you get people who they, you know, it's the Dunning-Kruger effect, right? They get like this much information, right? They get 1 % information and maybe that 1 % of information is really shocking, right? And then they automatically assume that they know the rest of the 99 % about everything

Brandy Schantz (11:53.186)
Yes.

Helen P (12:07.7)
Everything.

And then you get people, know, especially in our country, I talk about it in terms of toxic patriotism, this assumption that because somebody has served, they are therefore an expert, are therefore their opinion is more valid. They are therefore an honest and good human being who's not just out to scam or make a racket or make money or whatever. Right. Like there are these assumptions that come with the veteran, you know, military

Brandy Schantz (12:17.827)
Mm-hmm.

Brandy Schantz (12:21.699)
Right.

Yes.

Helen P (12:39.358)
title that our country has like pendulum swung into with like zero consideration of like, is this actually a healthy level of like reverence and respect and like all these things and not to say that military don't deserve those things for their service and their sacrifice. They absolutely do. But like

Brandy Schantz (12:44.898)
Yes.

Brandy Schantz (12:56.814)
Absolutely, yeah.

Helen P (13:00.95)
I worked with field artillery guys. I was a nurse. Was I trained to call for fire? Sure. Would I ever think that I am smart enough to do that without significantly more training? You know what I mean? Exactly. That is where so many other people, I have enough education and enough insight, personal insight to be like, things I'm really good at. Medicine, working in unsafe conditions because that's a part of what I do

Brandy Schantz (13:13.709)
Yeah, exactly.

Helen P (13:30.856)
the global health world, being an advocate and telling stories that help create change, looking at policy and helping to decide is this effective or not effective? Is it gonna meet our intended effect? All these things. Things that I am definitely not an expert in, like car, I would never give somebody car advice. I could tell you what kind of seat covers are nice, but it's this assumption.

Brandy Schantz (13:51.583)
Right.

Helen P (13:57.814)
that goes out into the community that because these guys have had X or Y or Z number of experience that they are somehow valid in everything that they say and I have seen just some absolutely wild narratives get a whole lot of traction based on somebody's past in the military and I'm just like what are you like you know yeah like you're not an expert in this

Brandy Schantz (14:21.663)
No, has to... Your experience in the military has no bearing on your understanding of medicine at all.

Helen P (14:27.942)
Yeah, like, you know, somebody's like, I served in seven special forces. Let me tell you about my economics theory. And I'm like, oh, do you have an economics degree? They're like, no. And I'm like, ah, you know, like, okay, tell me exactly. I mean, it's just, it's so, and I'm like, you know, a component of my work now, I...

Brandy Schantz (14:37.867)
Yeah, I could assure you nobody's calling seventh group to do economics, you know.

Well, I think what's worrisome is we don't just see this in uneducated populations. I see it in educated populations too. Let's talk about going to the doctor, especially having something that's not well understood. And let's be clear, we don't understand most of medicine. We've come a long way. Just in the past five decades I've been on this earth, we've come so far. And you know, no longer cancer is a definite death sentence. No longer is it if you get AIDS, it's a definite

Helen P (15:13.994)
Yeah.

Brandy Schantz (15:16.811)
you you get HIV positive, it's not what it was 40 years ago. You know, we've come so far, but you know, we still have so much further to go. And I can't tell you how many times I go to a doctor, especially older ones, you know, I do think they're doing a better job in med schools because the younger doctors do, from my experience, do a much better job. Well, if I don't understand it, it doesn't exist. Wow.

Helen P (15:18.154)
Yeah. Yeah. Yeah.

Helen P (15:37.899)
Yeah.

Helen P (15:43.488)
Yeah. Yeah.

Brandy Schantz (15:44.907)
You think you've got a lot of knowledge, huh? You know everything. Interesting. So it's interesting how this does happen in all communities.

Helen P (15:47.956)
Yeah. Yeah. It's I mean, it's it's

It does, and I mean even on the medical side, there's constantly, one of the stigmas, obviously my husband has a seizure disorder. There is a type of disorder called PNES, which is psychogenic non-epileptic seizures. And it used to be called pseudo seizures.

Brandy Schantz (16:02.474)
Mm-hmm.

Helen P (16:11.414)
And there is a huge problem with people assuming that if somebody has PNES that they're faking, right? Like that pseudo seizure, pseudos mean false and so therefore they must be false seizures, they just must be faking, as if these people are just like throwing themselves on the grounds and like shaking their body for attention or drugs or you know, whatever. And you know, I will tell you that bias is present in absolutely everything that we do to include medicine, to include providers, you know, who make these claims. They're like, oh, they're faking. And I'm like, what makes you say that?

Brandy Schantz (16:17.318)
wow, yeah.

Brandy Schantz (16:35.981)
Absolutely.

Helen P (16:41.528)
What basis do you have? Yeah. But again, that contributes to this mistrust because these patients are going through something. We may not be able to explain what it is. We may not have discovered what exactly is the root cause of PNES or a myriad of other conditions, but we know that they are a thing.

Brandy Schantz (16:42.349)
How did you get there?

Helen P (17:05.462)
And for example, there was a great show, I think it was on Netflix. It was this medical mystery show. There was this doctor who had a, she had a.

like a column in a newspaper, you could write into her and be like, solve my mystery diagnosis kind of thing. And they ended up turning it into a Netflix series. And one was this child who just had these like drop-like seizures. She would just, you know, she was awake for a little while, totally normal. And then she'd just like freeze. And then she would, and it was just happening hundreds and hundreds and hundreds of times a day. All these doctors told the mom, she was, you know, this is not real. This is, she's making it up. And I'm like, she's three. Like, how is a three-year-old making this up, right?

Brandy Schantz (17:46.198)
Right?

Helen P (17:46.992)
like and and so she went on this show and this doctor was able to use her resources you know sort of globally to find other families who looked you know like this little girl and to get a diagnosis and it turned out that she had an impairment in what's called the sodium channel reuptake system which basically is all of your muscles so like every you know as this as this as her condition was going throughout the day she would get more tired you know she would base her her muscles basically couldn't respond so she was like

Brandy Schantz (18:03.82)
Mm-hmm. Right.

Helen P (18:16.856)
like intermittently paralyzed, hundreds of times a day for just these like brief little seconds. And it was so interesting to see and to hear, know, and for this family to get the validation of like getting a diagnosis and knowing that, you know, while there were not many other families that they weren't alone.

Brandy Schantz (18:30.818)
Yes.

Helen P (18:36.554)
But when we don't have trust in the system, this is how families end up doing these very desperate things, you know, and like not to, this is definitely not a shame of anybody doing, you know, experimental research or treatments or, you know, alternative therapies or anything like that. But we do see a lot of people who get very vulnerable in their, you know, especially medically in their recovery or in their diagnosis and in their journey.

Brandy Schantz (18:36.578)
Yeah.

Helen P (19:06.488)
And it's very easy for them to be manipulated. And then when it comes to the end of that manipulation, whether it's a financial scam or just whatever, people get to a point where they're like, see? See, this is why I can't trust the system, right? Because it's just this added harm onto harm, and it just breeds this mistrust. then that just spreads into other things of like,

Brandy Schantz (19:11.136)
Yes. very.

Brandy Schantz (19:25.206)
Yes.

Helen P (19:36.408)
If I can't trust them, then who can I trust? And that's the government. So then clearly I can't trust all of the government and all of these things.

Brandy Schantz (19:43.201)
Yes, and I think one of the things that institutions and leaders miss is you do have to, there's no perfect equality or justice for all. Nothing's perfect. We can't make everything perfectly equal. There's always going to be somebody gets something a little bit more than another. That's just life and there's no way to make it perfect. But at the same time, know, again, just thinking about my own situation.

Helen P (20:02.89)
Yeah, we're looking for equity, not equality.

Brandy Schantz (20:12.972)
When I completely went down and I mean, I was down for a long time. I got to a point where I couldn't work. I couldn't do anything. I was paralyzed for a short period of time. was just laying in bed, couldn't walk. And the only thing, I didn't even have a doctor say I'm sorry, actually. I was misdiagnosed for 19 months that I was having a reaction to the Humira. And then of course the second dose of the Pfizer vaccine.

Helen P (20:33.141)
Yeah.

Brandy Schantz (20:42.316)
you know, just kind of tripped it all into overdrive, which, and we still don't know a lot. I mean, we have so far to go to understand what those reactions are, but, you know, just because I love to read as much as I can, you know, there does seem to be a pattern emerging that scientists are acknowledging that the spike protein seemed to have taken whatever you were already going through. didn't cause it, but if you had a, you know, maybe at stage one,

Helen P (20:44.138)
Yeah.

Helen P (21:07.316)
Right, right, but it just exacerbates it. Yeah.

Brandy Schantz (21:10.668)
Yeah, maybe you had a stage one cancer and bam, it goes to stage four. Maybe you have, you know, pots and then it takes it into overdrive. We still don't know. There's a ton of stuff to go. But at the end of the day, if you as an institution, if you as a government, if you as a leader are going to say, you must do this, and then somebody loses their entire life and livelihood from it, there needs to be something to catch that person and help them. And I learned very quickly, there was nobody there to catch me.

Helen P (21:14.55)
Yeah.

Helen P (21:18.006)
Yeah.

Helen P (21:30.069)
Right.

Helen P (21:37.301)
Right.

Yes ma'am.

Brandy Schantz (21:40.271)
And that was one of the reasons I started the podcast. It's one of the reasons that I'm now chairperson of the Virginia State Rehabilitation Council because I said, you know, I'm very well educated. you know, kind of love being a little pushy. I definitely know how to get what I want. I have money. have, you know, a decent life. What's happening to the people who don't? And that's why they really don't trust institutions because they were barely making it. And then they lost their livelihood.

Helen P (21:58.859)
Yeah.

Helen P (22:05.845)
Yeah.

Yeah.

Brandy Schantz (22:09.214)
And now they don't even have a place to live because they couldn't afford rent because they couldn't go to work and the government's just a big shrugging I don't know or they don't even say anything. I mean, I think I saw probably, I lost count of how many doctors I had seen after my diagnosis with the humeral reaction.

Helen P (22:11.914)
Yeah.

Helen P (22:16.979)
Yeah. Yeah.

Brandy Schantz (22:27.546)
And it took a long time before I finally got to a neurologist who said, I'm so sorry for what you went through. You should have never had to endure that. And I thought, wow, I finally got it I'm sorry. And it wasn't from the doctor that, any one of the doctors who misdiagnosed me. I think that, you know, if you want people, if you want to be a leader, you know, let's take it back to what we've learned as military officers, as army officers, as leaders. If you want to be a leader, you have to be ready to take.

Helen P (22:37.174)
Yeah. Yeah. No.

Brandy Schantz (22:52.13)
control and take ownership and take that responsibility for what's happening. If your troops are in trouble, it's your responsibility. They're your responsibility. That's part of leadership and it might suck, but you've got to take that into consideration.

Helen P (22:52.34)
Responsibility. Yeah.

Helen P (22:59.467)
Yeah.

Helen P (23:02.859)
Yeah.

Helen P (23:07.178)
Well, and now, know, it's with with health care being such, you know, it's so hard to access health care as it is for, think, most everyone, you know. And I will say that, you know, back in the day, it seemed like when providers were not, you know, when you had providers that were gaslighting or invalidating or just not good, you know, bad reviews and things like that would kind of like force them out of the system because

Brandy Schantz (23:14.328)
Yes, it really is. Yes.

Brandy Schantz (23:36.706)
Yes.

Helen P (23:37.064)
because they didn't have the protection of these large conglomerate entities now. And now with all of these health systems becoming like HMOs and all of these things, it doesn't really matter if you're good or not. And you have virtually no choice in who you see. You get a referral, you see a doctor in that clinic, and maybe they're good or maybe they're not. And you're just kind of at the mercy of the system and that's another contributor to it.

Brandy Schantz (23:43.395)
Right.

Brandy Schantz (23:47.522)
Yes.

Brandy Schantz (23:51.989)
It doesn't.

None.

Brandy Schantz (24:06.19)
Yes.

Helen P (24:06.968)
not that normal sort of career progression of feedback where people, you can give them a bad review, but half the time, the institutions just go online and take them down. They have them deleted off Google, that's their new thing.

Brandy Schantz (24:17.871)
They do. Or what does it matter if you only have, know, just talk about TRICARE right now, which is going through a heck of a time in 2025. mean, 2025 has been rough for TRICARE recipients, that's for sure. So you have TRICARE, only have so many doc, it's only getting worse. There's only so many doctors that even take your insurance. Every doctor has a six month wait. You just waited to see a rheumatologist, you got a bad one. Now what? What am I gonna do?

Helen P (24:25.29)
Yeah. gosh. Yeah.

Yep, and it's only gonna get worse.

Helen P (24:40.864)
Yep. Yeah.

Yep. Now what? Yeah. And then so, you know, we've, I've asked this question.

Brandy Schantz (24:48.769)
Wait for another six months, hope the next one's good.

Helen P (24:51.926)
I've asked this question so many times and I've said this so many times that, you know, in the journey that we've had with Matt, with my son who's on the spectrum, with all of these things, I have so frequently had to rely on my personal connections to the healthcare system locally. And that's been great for us. You know, it's really helped us navigate, but it's still been insanely challenging to navigate all of the referrals, the prescriptions, the authorizations, the copay.

Brandy Schantz (25:07.492)
Yes.

Brandy Schantz (25:17.123)
Yes.

Helen P (25:21.98)
the co-insurance, you know, all of these things. And I go, my God, if it's this hard for us, what is happening? What are other people doing? And the answer that I've come to is they're not doing it. These, you know, in the veteran space, these are veterans who abandon the system. And then we wonder why they end up homeless, impoverished, suicidal, right? They get so fed up with the system and it's not for lack of trying.

Brandy Schantz (25:31.599)
other people doing.

Brandy Schantz (25:50.191)
Did they just leave it? No,

Helen P (25:51.8)
but they leave it. It's, you know, and it's, you know, it's an.

Brandy Schantz (25:55.075)
And guess who's waiting in the wings for them too? The guy with the supplement. And that's where this comes down to. We ask, you why are people going for these things that might even be harmful to their health? Why aren't they trusting medicine? Well, first of all, they're there. They're there. You're desperate. You've worked your butt off to try to get some sort of medical care. You're failing at every turn. You can't get the right care you need. And then there's this guy saying, hey, I know you're desperate. Look what I have. Jingle, jingle, jingle.

Helen P (25:59.955)
Exactly.

Helen P (26:07.211)
Yeah.

Helen P (26:10.954)
Yep.

Yeah.

Helen P (26:22.902)
Yep. Yep. Yep. Be on your doorstep tomorrow. Amazon Prime. Yeah. I mean, it's so...

Brandy Schantz (26:24.994)
today, right now. No wait, no six month wait.

Yeah. Yeah.

Helen P (26:34.824)
It's so hard for families because, know, it's, I understand the frustration. I understand the desperation. I mean, we've been there, you know, and I've, I've had to tell people, you know, I've had other caregivers and other advocates come to me and say, my God, like, you know, I'm so sorry it's taken you like this long to get through, you know, all the needs from that, but like, also, how did you do it? And then I'm left saying like, well, part of it is because we at least had some financial resources to be able to pay for private

Brandy Schantz (26:43.096)
Same.

Brandy Schantz (26:58.894)
Mm-hmm.

Brandy Schantz (27:04.312)
Yes.

Helen P (27:04.727)
testing to be able to pay out of pocket, know, to do to get a jump start to be able to say and then also I have the medical knowledge to be able to say hey like look at look at this you can't ignore this if you're doing standard of care, you know, all of these things and so many other families just don't have that and they give up they walk away from it. They're like well, I don't know maybe maybe it's maybe it's me maybe it's maybe I'm crazy maybe it's in my head maybe it's you know and I think that that is

is like truly one of the biggest failures in the system is, know, it's, it's no one, I don't think the system even acknowledges how.

catastrophically hard it is to navigate even amongst the VA. You know, I can remember, you know, my Matt and I did an NPR article talking about challenges and access to care, you know, the degradation of the military health system, all these things that have impacted our ability to get to get him care. And shortly after I had a clinician from Tampa from the Polytrauma Center with the VA reach out and say, hey, we want to like take him here. He's the perfect candidate. And I was like, great.

Brandy Schantz (27:51.426)
Right. Yes.

Helen P (28:16.6)
How do I do that? And they were like, ah, let me get back to you. And they didn't know. They didn't know how to get him there. They were like, oh, come in through the ER. And I was like, absolutely not. We're not doing that. We have two small kids. We live like four hours away. Where are we gonna stay? Who's gonna cover costs? You can't just...

Brandy Schantz (28:21.52)
gosh, of course.

Helen P (28:38.166)
And they're like, just drop him off. And I'm like, he's not independent. So that's not an option. That's how he goes missing. And it was just funny because I was like, man, the system doesn't even know how to work this system.

Brandy Schantz (28:42.669)
No.

Brandy Schantz (28:52.599)
No.

Helen P (28:52.958)
And that's something that we're seeing now across all the different government agencies. People are talking about a loss of institutional knowledge. This was a conversation that just came up recently amongst caregiver advocates was what is being done to protect the institutional knowledge that was gained in 20 years of war for how to work and support combat wounded, if not just ill injured,

service members as you know when these things eventually happen. And I was the first one to say like hey listen like there has been a siphon, a vacuum of knowledge and information and resources that has left the system and no one is making an effort to document these things. If you want to find out, if you have a service member who gets medically evacuated to Walter Reed or to San Antonio, most families now don't know and a lot of the caregivers

don't know that that loved ones can be made non-medical attendants, that they can be put on orders, that they can be paid to be at the bedside. Most patients places, you know, and people don't know that their work can be protected with up to 36 weeks of FMLA. You know, most people don't know that they can get access to the CDC on base as a priority category for hours of childcare, you know, during their treatment. You know, there's all these things and people don't know that those things exist because everything has left, you know.

Brandy Schantz (30:07.118)
Mm-hmm.

Brandy Schantz (30:20.672)
Right? And then by the way, when people don't know they exist and don't use them, then it comes up for budget and it's, well, let's cut it out of the budget. Nobody's using it anyways. Well, if we knew about it, we would have used it.

Helen P (30:27.69)
then they go away. They go away. That's right. Yep, that's right.

That's right. it's this double edged sword. We're seeing that with the military health system. We're not using the referrals. Well, like they didn't exist to begin with. How can you use a service that you didn't fund for people to utilize if it wasn't there, right? Like we can't use something that's invisible. And I think from the American public standpoint, there's this perception that military health care is only important during a war. And I would say that the numbers would definitely argue that.

that to suggest that there's still a significant amount of illness and injury that occurs even during non-war time. And it's still important to make sure that these service members and also families have access to quality medical care, let alone veterans, right? Like, that's the other component of it. Like military health care and veteran health care are intricately tied. And if we're not doing one, we're failing at the other. And so it's, you know.

Brandy Schantz (31:13.261)
Yes.

Brandy Schantz (31:21.763)
Yes.

Brandy Schantz (31:31.246)
Absolutely.

Helen P (31:34.31)
But it's, unless people start getting into the advocacy side of it, and especially right now I think the challenge is arguing these narratives that are coming out saying that everything's fine. You know, when the house is on fire and I'm reading articles that say it's definitely not burning, was a small, small smoke incident. Yeah.

Brandy Schantz (31:49.836)
Right.

Brandy Schantz (31:54.816)
Yeah, it was a small little, just a little smoky in the wastebasket in the corner. Don't pay any attention to that.

Helen P (32:02.058)
That's right. And it's just been so interesting to compare things to like the lived experience, like as an advocate of like, wow, like I'm getting more calls than I've ever had about people who can't get access to services, to care, to referrals that they've been authorized for. And yet they're saying that community care referrals are, you know, being funded across the board. And it's just like, I haven't seen that. Yeah, I haven't seen it. You know?

Brandy Schantz (32:25.421)
That's not true. Right.

Helen P (32:29.3)
But then you get people, it's so funny because the flip side of that is you'll get people that when you talk to them about your lived experience, they'll say, well I just read a news article on X, Y, and Z, and it said that this is happening. And I'm like, okay.

Brandy Schantz (32:39.425)
I, yeah.

Brandy Schantz (32:44.329)
what they say but that's not what it's and that's why I think it's important I have commented on that article talking about mental health care as much as I can I've commented on LinkedIn I've done it on Instagram I've been on X and you you name it and it's important we all do say nope this is not true I was given this cap I assure you I had a cap and you know what if you can at least this goes back to the transparency we talked about if you're at least honest about it

Helen P (32:58.261)
Yeah.

Helen P (33:01.61)
Yeah. Yeah. Yeah.

Brandy Schantz (33:12.309)
Maybe I'll understand if they came out and said, currently we have a cap on the number of sessions that we can provide for mental health care because we have a shortage of therapists. I would say, okay, well that makes sense. They do have a shortage of therapists. I had to get on a waiting list to see my therapist. But be honest about it. Just say it.

Helen P (33:13.824)
Great.

Helen P (33:20.404)
Yeah.

Right?

Yeah.

Helen P (33:29.77)
To say that, exactly, to say that there's no problem is disingenuous and it is also a blatant lie. And that's where it breeds that distrust. mean, everything that I've read now that's coming out of the news, I've...

Brandy Schantz (33:37.387)
It is.

Helen P (33:45.568)
I've been taking, no matter which side it falls on, I have been taking with a huge grain of salt because I feel like, I saw this quote and it was saying, if it's raining outside and a news article shows up that says that it's sunny and bright and perfect, your job is not to be like, okay, I must not know what rain is. Your job is to be like, no, this isn't accurate.

Brandy Schantz (33:51.693)
Mm-hmm.

Brandy Schantz (34:10.645)
Right.

Helen P (34:13.03)
And I'm totally butchering that quote, but I think it summed up kind of my sort of take now on any kind of any information that like crosses in front of me now is like to question everything because I feel like it is all being manipulated, you know, no matter which side you go to.

Brandy Schantz (34:30.049)
Yes.

Helen P (34:33.654)
And the only thing I can really trust is what I'm seeing with my own eyes and so what I'm experiencing and that's, you know, that's again, that's my own mistrust now is like, can I actually trust the writings that have been coming out and the information that's being posted? And that's, you know, it's just, it's just the snowball effect.

Brandy Schantz (34:47.948)
Right.

Brandy Schantz (34:54.061)
It leads us to where we are today. And how do you get out of it? Because it's happened in every aspect of people's lives. And much of it, there's obviously at this point kind of a have and have not situation in the US, even among veterans, there's haves and have nots. Even if you have access to your TRICARE for retirees and you're not getting the right care at VA, well, you can use TRICARE for retirees.

You know, I live in the DC metro area where the land of the retired military officers. So have all these people who served as officers mostly, you know, obviously there's retired enlisted troops as well, but the, know, the disproportionate number of retired military in this area are retired officers all with, you know, master's degrees, plus, plus, plus lots of connections. Many go into

Helen P (35:35.412)
Right.

Brandy Schantz (35:50.252)
Consulting they're they've got their great gig where they're making seven figures They've got the big house in McLean. They paid four million dollars for you know, they're living a good life And I hear them say all the time. Yeah. Well, this isn't my experience. Well, of course, it's not your experience you've got millions of dollars in the bank a great house in McLean and you know your choice of doctors because you could just pay for it out of pocket you've got to think about the experience of somebody who's not in that same situation and

Helen P (35:58.582)
right?

Helen P (36:05.258)
Yeah. Yeah.

Helen P (36:18.152)
Exactly.

Brandy Schantz (36:19.595)
That's what we're not doing. We're not thinking about what is this person going through. I think we saw it very plainly last year as we were going through the presidential elections. And I love studies. I love numbers. And I worked in finance for the last, what, 12 years. So yeah, the numbers said the economy was great. I can tell you, I was traveling to Paris with my girlfriends. Our economy's booming. The US dollar is strong.

Helen P (36:41.3)
Yeah.

Helen P (36:45.802)
Yeah.

Brandy Schantz (36:46.881)
We're standing in line at Chanel for like three hours trying to get in because all these Americans are shopping with our strong US dollar. The economy is phenomenal. But you know what? Not everybody was flying. Yeah, not everybody's flying to Paris with their girlfriend shopping at Chanel, OK? And it was a very different world for everybody else. And we just have to acknowledge that while some things may be true on paper, you have to take a look at what's going on off the paper.

Helen P (36:50.367)
Yeah.

Helen P (36:59.242)
That's your economy. Yeah. Yeah. Well, and I've said that.

Helen P (37:14.549)
right.

Brandy Schantz (37:16.167)
off the numbers outside of the study and see what people are experiencing and they're struggling and they're not getting what they need from their institutions or their leaders and that's why we're where we're at.

Helen P (37:20.235)
Yeah.

Helen P (37:28.788)
Yeah, absolutely. I've said, you know, on the number on the the numbers and the economy side, you people would always be like, the stock market. I'm like, listen, the stock market is not the average man's economy. The cost of bacon, the cost of gas, the cost of child care, the cost of milk. That is the average man's economy. If you want to rate where that is, you need to look at the ratio of income to those things. And, you know, I had that experience of people are like, the economy's great. I was like, I don't know, man, my grocery budget is like great.

Brandy Schantz (37:38.687)
No.

Brandy Schantz (37:52.054)
Yes.

Helen P (37:58.664)
crazy high and childcare is like bankrupting me and like, know, and it's so true. Like it's the same on the healthcare side. Like it's amazing to talk about the wonderful reviews of all the people who have, but what about the have nots? And that goes into, when you talked about, you said a minute ago, like how do we repair these things? I will say that my experience as an Army officer, you know, I can remember, had the unfortunate pleasure of serving at some facility.

Brandy Schantz (38:01.965)
Mm-hmm.

Brandy Schantz (38:07.467)
Yes.

Helen P (38:28.689)
that had quite a bit of...

we'll call it turbulence, like while we were there. And I just, had this uncanny ability to like hit every one of them. I don't wanna know why, but there were scandals, there were, you know, investigations, all of these things that happened. And immediately following every one of those things, there was this like, we're not gonna talk about it. We're not gonna talk about it. It's done, it's done. Nobody's gonna acknowledge it. And I was like, number one, I will continue to talk smack because that is what I do.

Brandy Schantz (38:37.858)
Right.

Helen P (39:04.152)
and who I am as a person, but also how about just like some acknowledgement of like, this happened and it was wrong and it shouldn't have happened. We have taken these steps to correct it and we recognize that trust has been eroded. Had the commands that I was stationed at done those things?

Brandy Schantz (39:18.509)
Exactly.

Mm-hmm.

Helen P (39:27.538)
And we're talking about scandals that made it to the front page of the New York Times. These were big things that happened. And there was...

Brandy Schantz (39:34.038)
Yes.

Helen P (39:36.694)
Literally zero acknowledgement from leadership. No one wanted to acknowledge that it had happened. Even though some of these people weren't responsible, they were just in the chain where the investigation took place. And that is probably one of the bigger takeaways that I've learned when I later started running a nonprofit. Skeletons don't age well in closets, but they do better out in the open when you say, this thing happened, we acknowledge that.

Brandy Schantz (39:48.383)
Right.

Brandy Schantz (40:00.939)
No.

Helen P (40:06.648)
that this was wrong, here's how we're fixing it and taking accountability, ask us your questions, right? Like let's be transparent about it. And that's true whether it's for staff, whether it's for donors, whether it's for veterans, whether it's for patients, whether it, and there are actually studies on this in healthcare.

Brandy Schantz (40:13.76)
Yes.

Helen P (40:24.782)
in terms of, we'll call them healthcare accidents or, you know, sentinel events or like there's, there's all sorts of terminology behind it. But basically they looked at what is, what is more likely to result in a lawsuit against a provider who misses a diagnosis, does something wrong, prescribes the wrong medication, whatever. And one of the major findings was that in a situation where a provider does not come forward and say, hey, this happened and I'm really sorry. And like, want to

Brandy Schantz (40:43.852)
Mm-hmm.

Helen P (40:54.716)
you know, I'm when providers don't do that and many of them will not. Those patients are statistically significantly more likely to sue than when providers come forward and say this, this, yeah, this was just an error.

Brandy Schantz (41:00.031)
No, yeah

Brandy Schantz (41:08.492)
I'm sorry. Well, did, you know, there was nothing I could really do in my case for terrible reasons. you know, doctors do very well protect themselves. But one of the reasons that I did try to sue was my doctor's reaction to finding out that I was having a, I had been going through a reaction to Humira for 19 months, which he prescribed. And I was going and complaining about, and his feedback was, you're fine. You're being dramatic. It's not anything with me. You're fine.

Helen P (41:30.731)
Yeah.

Brandy Schantz (41:38.571)
They started calling, the physician's assistant in the office started calling other practices where she, you because obviously there's, could see other, your patient's records and see where else they're going. She started calling my other doctors, asking for copies of my records, trying to find out what I was saying and if I had mentioned anything. And that's what really got me worked up. And I was like, okay, that's it. And then I started calling attorneys. But you know, be, be a better person, really.

Helen P (41:47.03)
Yeah.

Helen P (42:02.122)
Yeah, I mean, it's so... Just be transparent. mean, I can remember...

You know, again, medicine provider, all these kinds of things. When I work with students, I tell people it is not if you make a medication error, it is when. We are, know, as nurses specifically, they are passing so many medications so quickly, so many of them, so many that are complicated. If you ever meet a nurse who said they have never made a medication error, they're either lying or they are too stupid to know that they have done it. Like that is period. Like everyone will make a medication error.

Brandy Schantz (42:19.296)
Yes.

Helen P (42:39.256)
It is inevitable. And you know, even in my own experience as a nurse, when things had happened, I one time had a patient who was ordered the same antibiotic for eyes and for ears. One is ophthalmic, the other is autic.

They had switched, they had the ear sticker on the eye bottle and the eye sticker on the ear bottle. It was one of those things you're like running through 10 patients, you're just doing it. And I gave, I just looked at the sticker, didn't read the rest of the label. I was like, yep, these are the right ones. Like, you know, did the drops, whatever. And they were backwards. When that got caught,

Brandy Schantz (43:06.731)
right?

Brandy Schantz (43:12.78)
you

Helen P (43:20.286)
The immediate response from the hospital, which was a military hospital, was don't go say anything. Don't tell her, just call pharmacy and see if it's okay. And I was like, no, that's not right. She deserves to What if this is gonna make her blind? Doesn't she deserve to know? I feel terrible. This is obviously partly my fault, but partly a systems error, right?

Brandy Schantz (43:30.88)
Yeah. Yeah. Yeah.

Helen P (43:43.926)
And that was the initial reaction of the system. It was like, oh, don't say anything. And I was like, no. Like, we're going to go and be transparent. You know, that intense sense of justice, I think, is also part of, like, probably my autism and, like, you know, just like my, neuro spiciness. but it's that, it's that accountability.

Brandy Schantz (43:57.344)
Well.

Brandy Schantz (44:01.012)
sometimes it's just do the right thing. Do the right thing and have some accountability. I, you know, for me, I think I actually blame my actual service in the army. I did learn some good things about that and taking accountability, taking responsibility is very important. Saying I'm sorry is important. Standing up, being responsible. You know, if you did something wrong, say, hey, I did something wrong.

Helen P (44:14.358)
Yeah. Yeah.

Yeah, it's not hard and yet, yeah, it's not hard and yet it seems to be not something that a lot of.

a lot of our government understands, that a lot of our institutions understand, the leaders of those institutions. And again, it goes back into this like breeding of mistrust. How are you gonna trust somebody when they've openly done harm? For that matter, we saw this during COVID was African-American communities were statistically much less likely to get the vaccine than non-African-American communities. There is a history there.

Brandy Schantz (44:52.767)
Yes, well.

Long history. Yeah.

Helen P (44:57.834)
There is a long history there. And so when people, I can remember sitting in meetings, people were like, my God, like why would they? They just don't understand science. And I was like, I don't think that is, I think they very much understand science. I think they also very much understand their own history and they feel betrayed. And that is a very hard thing to get. And we're not talking about hundreds of years ago. The Tuskegee experiments were like, yeah.

Brandy Schantz (45:12.212)
Yes. Yeah.

Brandy Schantz (45:23.872)
Couple generations.

Helen P (45:25.524)
Like, there are people alive today who went through that. So like, I can very much understand.

Brandy Schantz (45:27.094)
Grandma, yeah.

Helen P (45:32.502)
the reality and like the mistrust. And you know, it's, it was just so funny to like see, I was like talking to these like very smart people in the room and I was like, what do you mean you don't understand? I'm like, I understand. I think they understand. Like why don't you just ask them why they don't want it and see what they say. And it was just so funny because they were like, they were like, no, like that's part of the government issue anyways is the government is like, everyone trusts us. What are you talking about? And I was like, no, no one trusts you. Like you are,

Brandy Schantz (45:48.436)
Exactly. And I think that's the point too.

Brandy Schantz (46:00.874)
Yeah, not a single person. You know, and it's important that, you know, it's so easy to just say people are stupid, they're stupid, they're too stupid, so stupid. But poor people, lower middle class people, even people in the middle class, more and more, they do get the short end of the stick when it comes to the government. And I think nothing is more.

Helen P (46:02.496)
Not a single person.

Helen P (46:14.07)
Yeah.

Brandy Schantz (46:30.636)
Illustrative of that then the burn pits it took a lot of work from a lot of very strong advocates burn pits 365 they they they did a lot of good for us and then thank you of course to John Stewart for coming in and lending his celebrity but but make no mistake it was a lot of legwork and hard hard work from the people who started three burns pits 365 to get there and by the way

Helen P (46:33.206)
Yeah.

Helen P (46:43.274)
John Stewart, yeah.

Brandy Schantz (46:59.656)
Not only are we all still suffering from these illnesses, but they're still using burn pits. The military still uses burn pits. I don't know what to tell you. If you're asking the question right now, why do people not trust us? You need to sit back and introspect and reflect. You really need to sit back, introspect and reflect.

Helen P (47:04.95)
Yeah.

Helen P (47:18.132)
Yeah. Well, and not just that, but then then you have the situation where like the burn pit funding, I forget, I forget the name of that, the registry that they have. Well, not just the PAC, that but there was also the one for 9-11 responders and they defunded it. It was a part of the NIH for cancer funding. And so John Stewart was out again saying like, you already, you already said that they are entitled to coverage because of this.

Brandy Schantz (47:28.416)
The PACT Act and yes. Right. There's yes. They did. They did. Yes. Yep.

Yeah, doesn't work if you don't fund it.

Helen P (47:47.338)
cover it. And they were like, we are. No, you're not. Again, it goes into that lived experience. And it's like, we're looking at the human beings who are not getting their treatment. And it's all of this. You are so right. And that the government does not work for the average American anywhere. have even I have said if I ever became president, the first thing I would do is I would set up multiple desks, you know, in the White House lawn of just like how can

Brandy Schantz (47:48.652)
Yeah. No you're not.

Are you funding it? Yes.

Helen P (48:17.332)
help you and maybe that person is just somebody who who escorts them to the right department because god knows we have a million of them but i will tell you that in the advocacy work that i have done my god it's even hard i mean i'm sure you know like it's it's even hard to just do basic things and if

Brandy Schantz (48:23.573)
Right.

Brandy Schantz (48:36.716)
Helen, you just walked right into an opinion. I have very strong opinions about this. Look, I live in the DC metro area. I've lived here since 2007. And I can tell you what's wrong with this country just by living here. First of all, everybody's an attorney, everybody. Are you trying to tell me it takes like 30 million attorneys to run this country? Attorneys, all attorneys? We have no non-attorneys out there. Do we have, you know?

Helen P (49:05.141)
Right.

Brandy Schantz (49:06.194)
Anybody who's not an attorney, if you read job descriptions for even the smallest jobs here in DC, preferred JD, preferred JD, why? Why are all of the young people who work for Congress, and they are very, very young. If you see the staffers, you know, once you get to a certain age, you walk through the halls of Congress and you think you're in a high school. I mean, they're so young, easily. mean, they're young.

Helen P (49:09.899)
Yeah.

Helen P (49:13.696)
Yeah.

Helen P (49:21.811)
yeah, yeah.

There are people in staff positions who could be my children, where I'm like, whoo, hurts. That hurts, it stings.

Brandy Schantz (49:35.181)
But why are they all graduates of Harvard, Duke? Where are just people? Where are people? Where's the guy who owned a plumbing business in your town and saw some things that needed to be changed and then applied to work with their representative for the next two years so that they could better understand Washington and take that back home? Where's that guy? Because we need that guy in DC. need, I always talk about.

Helen P (49:40.886)
Columbia.

Helen P (49:52.224)
Yeah.

Helen P (49:58.858)
Yeah, they don't exist. Yeah. We need the farmer who actually ran a farm, not the guy who went through an ag program and then immediately went... Exactly.

Brandy Schantz (50:06.09)
Yes. Who got a master's in agriculture and came to DC to work policy? That's what I say about the medical community all the time. I'm always working in advocacy. I don't think anybody would ever hire me to do it. Why? I don't have a master's degree in health policy. I mean, I have an MBA and a serious, serious, actually I have multiple serious, serious diseases. So, and a lot of lived experience. Like,

Helen P (50:21.664)
Yeah.

Yeah.

Helen P (50:30.772)
I used to say the same thing as an executive was when people came to me with a master's of global health or a master's of public health or a PhD in any of those things, I would be like, I really, that is amazing, but that tells me that you've spent this time in a classroom and not in the field. You have not worked with refugee populations except maybe when you did like your capstone, like you spent a couple of weeks in Bangladesh or in Jordan or Egypt or wherever, but like you haven't actually lived this experience. And people were, I would be like, listen, if you have that,

Brandy Schantz (50:39.84)
Great.

Helen P (51:00.756)
experience like I'm all I'm there for you but it was also the same reason that I could never get hired at those large institutions because I you know I have a master's of science but I didn't have the master's of global health you know whatever whatever that they wanted that's what they wanted yeah

Brandy Schantz (51:03.148)
great.

Brandy Schantz (51:13.898)
Yeah, like, is that really what I need? Because I mean, I've been doing this for years. Nope, you're right. I live here. I can tell you this is this is one of the problems. You keep hiring these people who have no actual real world hit the road experience. I have spent and I'll just throw the whole damn group under the bus. A lot of great people there. But I've worked in, you know, housing and finance for the last 12 years and have been a member of Women in Housing and Finance, a group which is largely attorneys who sit around.

Helen P (51:24.554)
Yeah.

Helen P (51:42.102)
Yeah.

Brandy Schantz (51:42.796)
you know, drawing up policy all day long. And I can't say how many of them have kind of talked down to me a bit. Like, do you want, you probably don't understand this policy. I actually understand it well enough that I deconstructed the policy you worked two years on in less than three weeks and now have it working. But sure, you know, because I didn't go to law school, I went to business school. I must just be that idiot who makes money or whatever DC seems to think. But this is why nothing's working.

Helen P (51:54.826)
Yeah. Yeah.

Helen P (52:00.66)
Right.

But you're right. You're right. It's when we don't have, when we don't have people who have actually done the work, who have the experience, like sitting, and also, you know.

When, you know, if my dad could hear this, he would he would high five me saying like, you know, campaign finance reform when we have big businesses that are buying and owning politicians and the decisions that they're making all of those things so that we're making decisions on behalf of corporations and not on behalf of the people who work for them, who utilize them, you know, all of these things. When we stop working for the average man that government stops working and it's, you know, that has been like my

know maybe someday I'll like get into politics or not but like you know it's it's

Brandy Schantz (52:50.487)
I know, I love politics, I hate politicians. I've had people ask me a million times, I'd please run for office. I'm like, that is just not my jam. I like to get stuff done. I really don't, you know, I'm not a politician, I never will be. But you know, if we're gonna see any kind of change, we gotta stop hiring the same person. The entirety of DC is nothing but a, yes, the entirety of DC is nothing but a bunch of attorneys who've never done any real work.

Helen P (52:59.05)
Yeah.

Helen P (53:08.756)
Yeah, it's the definition of insanity.

Brandy Schantz (53:16.949)
in their lives, they sit around writing policy, they have no idea what's happening on the ground. They have no idea what it's like to live outside of DC or actually live with the policies that they're writing. Not even a second of trust in this, not a second of experience, nothing.

Helen P (53:19.85)
Yep. Yep.

Helen P (53:27.562)
Yeah. Yeah. And then half the policies, half the policies that we're writing are not being written for the average man. They're being written for some farcical, you know, middle-class family that doesn't exist anymore. You know?

Brandy Schantz (53:44.461)
Oh my God. Well, you know, I again, not trying to get political, but I do love, you know, I love watching some shows and I love my HBO. I watched Bill Maher and on Friday nights and then on Sundays we watch John Oliver and John Oliver did this whole bit. I can't remember the name of the family, but Chuck Schumer has a family he talks about in all these interviews and has been for like 20 something years about this typical middle class family. And it turns out they don't even exist.

Helen P (54:09.174)
Yeah.

God, they don't exist.

Brandy Schantz (54:14.612)
I'm like, I can't think of a better example for why we need turn limits than this entire situation. You've never actually met a middle-class family. You had to make one up. Chuck, get out of DC, hit the road, shake a hand, talk to real people. my God.

Helen P (54:23.306)
Yeah. Yeah.

Yeah. When you, when people don't know what it's like to work at a Walmart, let alone, by the way, a rural Walmart.

Because let's be honest, there is a difference between the Walmart in Fredericksburg, Maryland versus the Walmart in Brownsville, Texas, right? Not the same experience. And when you talk about getting into rural communities, I mean, I can talk to you about driving through remote parts of Arkansas where you walk into the gas station slash diner slash laundromat and the entire community turns to look at you because you're an outsider.

Brandy Schantz (55:03.55)
Yeah. Yes.

Helen P (55:06.313)
Like there is so, you know, there's just so much disconnect between the people who are writing the policies and the people who are living these lives, you know. And when you talk about, you know, a minute ago and you're saying, you know, we have to consider the other side, I think that's where people think that there's like this world that exists. You know, I've also never seen so many, you know,

Brandy Schantz (55:14.187)
Yes.

Helen P (55:32.47)
poor, lower middle class, middle class, even some of the upper middle class people who are very concerned about the tax benefits of billionaires, which I'm like, my friend, unless you have something that the rest of us don't know about, it's 125 families. I think it's literally 125 people, actually, who own the top 5 % of the economy.

Brandy Schantz (55:53.953)
Yeah.

Helen P (56:00.114)
If your name is not on that very short list, you need to be looking at what benefits you are getting. Are your roads getting paved? Are your bridges being maintained? Are your schools being funded? Like all of these things, because like you're still paying taxes. And the tax rates are going up. I know in our area our taxes, we don't pay taxes luckily because Florida has a permanent total exception for disabled veterans. But we looked at what our proposed tax bill would be. It was going to be double of what we would

Brandy Schantz (56:03.361)
Yeah.

Helen P (56:30.008)
would have paid last year. And it's, know, for some families, that's devastating. know, insurance costs, cost of living, taxes, you know, the eroding in our infrastructure is, you know, you know, yeah, roads. mean, yeah. I...

Brandy Schantz (56:31.639)
Yeah.

Brandy Schantz (56:36.031)
Florida is a devastating state for families right now with the insurance rates, tax costs.

Brandy Schantz (56:45.921)
Yeah. And those are the things we need to be talking about. That's why we don't, that's why people don't trust you. You know, they can't get to work. They can't find a job because you're too busy, you know, setting aside jobs for some rando kid with a master's in uselessness. You know, there's just these very real things.

Helen P (56:57.344)
They proposed.

Helen P (57:01.716)
Yeah. In Florida, they had talked about getting rid of, getting rid of property tax. And I was like, wait a minute. We don't have, we don't have income tax. They're raising property taxes currently, which means they need the money. Otherwise, where is the money going? Or sending funding back to the federal government, which may or may, right, tourism's out. like.

Brandy Schantz (57:10.571)
You just raised it.

Brandy Schantz (57:17.75)
Right.

Tourism's down.

Helen P (57:23.848)
Also, if we don't have taxes, how do these things get done? How do we get who's gonna pay, who's gonna pave the roads, who's gonna keep the schools running, who's gonna fund the fire department and the police department and all of these things? And I was the only person, everybody was like, yeah, get rid of taxes. And I was like, question, I just would like to know the implications of this before we all sign up that like, yeah, I don't wanna.

Brandy Schantz (57:29.377)
Yeah, who's gonna pay me?

Brandy Schantz (57:45.933)
Hold on.

Brandy Schantz (57:49.966)
Well, especially as a, again, we've talked about this as a disabled veteran and my husband's retired army. I'm like, well, hold on. I mean, I need some taxes being paid because that's how I get my benefits. mean, no taxes equal no benefits for Brandy. You know, I have to live. Yeah, there's like, the stuff comes from a place. It's not all just notional, you know, people are like, I don't want to pay taxes. but I want.

Helen P (57:53.842)
Sorry for, rely on taxes, paid by taxes.

Helen P (58:02.933)
Yeah.

Yeah. Yeah. And no resources. Yeah.

Helen P (58:13.995)
Yeah.

Brandy Schantz (58:17.463)
free tuition for serving my country. Well, wait a minute. Yeah, my house is on fire. Where are they? FEMA, come here, come here. There's been a hurricane. Well, we're going to fund it somehow, y'all. And no doubt, mean, again, I live in DC. There needs to be change here. mean, there's things being funded that's ridiculous. somebody who worked for years in DOD, I definitely know that.

Helen P (58:18.176)
But I want the fire department to shh, that's right.

Helen P (58:26.048)
Yeah, yeah, it's...

Helen P (58:35.062)
Yeah. I didn't think of... Oh yeah. Don't even get me started on DOD budgeting. I can tell you stories. I can tell you stories.

Brandy Schantz (58:42.475)
I mean, yeah. Well, you know, we've said, you know, there are two metro stops apart, but you got DOD saving money by using burn pits. And then you've got VA stomping around screaming about how expensive the burn pit injuries and illnesses are. And I'm like, woohoo, guys, two metro stops. Just jump on that metro and go. Just.

Helen P (58:55.563)
Yeah.

Yeah, maybe. Maybe consider it.

Yeah, I mean, it is an absolutely wild world that we live in. But I also think that for, you know, a lot of our community, I mean, you and I have obviously had like very lengthy conversations about all of these things. And I think that these are the conversations that more veterans need to start having. Why do we have a distrust in the system? Why do I feel like the system is failing me? Like, put that into a sentence and write it on paper, you know, like what, write it to your congressman, you know, hey, like you're defunding the PAC DAC, but it turns

Brandy Schantz (59:18.391)
Yes.

Brandy Schantz (59:22.669)
Mm-hmm.

Yeah.

Please.

Helen P (59:31.166)
out that I just had a rare form of cancer that was discovered. Like maybe that's because I have burn pit exposures, you know, all these things. Like people are not, you know, they think that...

Brandy Schantz (59:36.897)
Yeah.

Helen P (59:41.812)
They think that the system is so broken that they still can't enact change. And I would say that that's not the case. We also just have to start being a lot more vocal about the problems that we're facing. And I will tell each and every veteran, listen, if your life is A-OK golden, if you came out with a 06, you know, multi-star retirement and you are living the good life as a consultant, like by all means, talk about how wonderful life is. I can tell you that in our household that is not

Brandy Schantz (59:52.994)
Yes.

Brandy Schantz (01:00:09.281)
Yeah.

Helen P (01:00:11.796)
our experience.

Brandy Schantz (01:00:12.932)
But you know, the thing is, some of the, one of the best things I've ever heard in my life, I always took it to heart. I was at a women's event honoring professional women. It was sponsored by Quicken Loans. And I'm trying to remember who said it. Everybody on the panel was somebody very, there was a very famous TV news journalist that, you there were some very successful women up there. And one of them said, when you are climbing to the top and you're at the top of that ladder,

or even just on your way up, don't forget to turn around, reach back and pull up the next woman. And same for veterans, you you're retired, you know, whatever, and you've got a great job and you're living the life and you know, you're doing well. Don't forget to stop and look back and see who's struggling and pull them up. That's very important. Don't forget to pull up your fellow veteran.

Helen P (01:00:46.784)
Pull up the people behind you.

Helen P (01:01:00.98)
Yeah, yeah. I would say, you know, I don't have any statistics to back this up, but I would say that there are probably more veteran and more veteran families now that are struggling.

than probably ever before. think that that is, don't, you know, I, again, I don't have, whether that struggle is financial, you know, physical mental health, access to resources, just quality of life, however you want to look at it. I don't have statistics, but I would say that we are probably not doing as well as what people are saying is being done. The lived experience and I, you know, I've started telling people, you know, obviously,

Brandy Schantz (01:01:16.138)
Yeah. Yeah.

Brandy Schantz (01:01:36.672)
Yes, lived experience, I'll agree. Yeah. Yeah.

Helen P (01:01:43.624)
that story is relatively public and people will be like, my God, how's he doing? And I've started saying, he's great, we're great, thank you so much for asking. I'm like, no, it's hard every day. I am no longer working full time because I am doing so much advocacy and so much management, so much care for him. And it is really, really hard and is taking a toll on us. And people were like shocked that I would be honest with that question. And I'm like, sugarcoating it because when we sugarcoat it, what's happening, especially in my situation is when people

Brandy Schantz (01:02:03.958)
Just that honest, yeah. But be honest.

Brandy Schantz (01:02:09.174)
Yeah.

Helen P (01:02:13.528)
talk about Matt and his experience. like, oh, they're doing great. They're doing great. And I'm like, no, we're not. We're really not doing great. Like, we're struggling every day. And it's, mean, that is something that I've started telling all veterans. I'm like, tell it like it is. If you're struggling, say it. If you're great, say that too. like, for the majority of the people that I work with, they're struggling. And I'm like, hey, be honest about it. Because when we're honest about it, I think it moves people's opinions when they hear

Brandy Schantz (01:02:18.741)
No we're not.

Yeah.

Brandy Schantz (01:02:31.593)
Yeah.

Helen P (01:02:43.528)
when they read these articles and they're like, that's crazy, know, veterans best ever, huh? Well, that doesn't track with like all these veteran families that I've just met. And so I think the honesty would benefit all of us. So.

Brandy Schantz (01:02:57.088)
Yeah, it would. I hope that the lesson learned coming from here is speak up. know, when it's not your lived experience, stand up and say, no, this is not my lived experience. This is not true for me. And, you know, for the institutions, the leaders out there, you've got to start being honest and transparent. Transparency is going to take you very far. That's what's going to get us to a better place. But we can't if we don't work to be more.

honest and inclusive. And I'm very lucky. I have the best dog in the world now telling me how much she loves me.

Helen P (01:03:28.074)
Right.

Helen P (01:03:32.464)
Yes. She's like, I would never, she's like, I would never consider not being faithful to you.

Brandy Schantz (01:03:39.23)
She's like, mom, I would always be honest with you and I know you would, baby. I know you would. Well, thank you for being on the show again. This has been the best series. We need to up our game next time. We'll be here in DC. Maybe we'll walk the halls of Congress and just surprise different members of Congress with really difficult questions.

Helen P (01:03:41.748)
Yes.

Helen P (01:03:56.97)
I'm here for it.

Helen P (01:04:05.162)
That sounds awesome.

Brandy Schantz (01:04:07.021)
All right. Thank you for listening to the Living Chronic. Thank you, Helen Perry.