Launching A New Care Movement

Michael Mackniak 0:04

Welcome back to Holding It Together, Kinda. I'm your host, Michael Mackniak. And if you've been listening, you know I spend a lot of time talking about the social mirror, the version of ourselves we polish for the world while we're privately shaking the safety gate of a broken care system. For years, I feel like I've been a lone voice talking about that 1950s bedside manner and the need for real care coordination and getting back to social work the way that social work was meant to be. But today's gonna be different. Today I am joined by someone who shares my obsession with fixing what's broken, not just by complaining about it, but by building something better. Victoria Cuore and I have realized that identifying the system's flaws isn't enough anymore. We need to offer the roadmap. Well, today we're not just gonna do a podcast. We're here to announce a whole new movement. We're launching a new series called This Is What It Takes and a global collaboration hub that's going to change how we advocate to and for one another. Hello and welcome to the Holding It Together, Kinda podcast. I'm your host, Michael Mackniak. Here we will get real on our conversations about chronic health issues, mental illness, and caregiving, and the messy reality of keeping it all balanced. No sugarcoating, no clinical jargon, just real talk about the hospitalizations, the medication battles, and the toll it takes on a home. This is for the parents, siblings, the partners who do the impossible every single day. Holding It Together, Kinda is a home for the overthinkers, the multitaskers, and anyone who feels like they're one spilled coffee away from a meltdown. Find us on YouTube at HITKinda, h-i-t-k-i-n-d-a, and subscribe, like, follow, comment, vent, throw rocks, or whatever you need to do, but do it today. Okay,

Victoria Cure And Her Mission

Michael Mackniak 2:17

here we are. We're back, and I am super excited to welcome my good friend and one of the just another woman who just constantly rides me about everything I do. Victoria Cuore. Welcome. It's good to see you and hear you again.

Victoria Cuore 2:35

I know it's only been like five hours.

Michael Mackniak 2:38

Has it been that long? I feel like it's been longer.

Victoria Cuore 2:40

You missed me.

Michael Mackniak 2:41

I did. I did. Listen, so welcome to my show. I've started this new idea. I hate when people, when you go to a conference or when you give a presentation or whatever, and somebody reads a cue card that has your credentials on it. And I don't care much about credentials, but I want you to introduce yourself and tell my people and all those caregivers and these families out there and folks who are struggling with complex systems of care due to chronic illnesses, et cetera. Who are you? What do you do? And what are you really doing now that that gets your juices flowing, got you all fired up?

Victoria Cuore 3:18

I work with you. That gets me all fired up.

Michael Mackniak 3:22

I am that's been all of a week. What do you do?

Victoria Cuore 3:25

It's been a hell of a week.

Michael Mackniak 3:27

It has been a hell of a week.

Victoria Cuore 3:28

We've been I mean, you're talking like 2 a.m., 4 a.m. Yeah, it's been and a lot has been accomplished. I am a survivor of domestic violence, and for 20 plus years, I have been advocating for the voiceless, and I support and advocate in the court system for people who've been through domestic violence, physical, emotional, financial, psychological, narcissistic abuse, as well as I advocate for the children. I also go in there into the actual situation when I go into the home, when the situation has happened and law enforcement's on scene, and I start advocating if we have to do a 1013, which is sending someone off to be institutionalized for whatever reason, we do that as well. I I prefer to like try to de-escalate a situation instead of having them take somebody off in handcuffs because everybody is already heightened. So I've been doing that for over 20 years. And then it just got bigger and bigger and bigger. And so then four years ago, we started A Contagious Smile podcast, which is a top 1% global podcast, which you have graciously graced your appearance on more than once. And then I want to be able to offer all tools that are necessary because I went through this alone. And as no one should have to go through it at all, you shouldn't have to go through it alone. And I did. And so I started an academy where when you go on it, it says A Contagious Smile. So if God forbid, you're still in that current situation, it looks like it's for kids or it's something else, and you can quickly remove it and it's for your protection. And it has about 150 courses in it right now. Most of them are free. Some of them are the most $5. And that's only to help with the platform cost of what it costs to run this. I looked at our numbers this morning and we have donated 608 scholarships to the academy, which means if hypothetically you came to me and said, I have $50 and I'm leaving my abuser, but I need this information, you don't have to say another word. You're going to get full access to all the free courses. And if there's $5 courses, you'll get those too. So that's already there. And then I have written over 50 books. There's, I think, 38 on Amazon right now, that go from in the midst of it to getting out of it and realizing that you are better and stronger than you ever realized, and you don't give yourself enough credit because you've been turned down, because you've been, you know, just belittled and degraded. And that's not your fault. And I help you find that tiny flicker of light and show you that that can start a wildfire. And I help you through your entire journey of healing. And there's some awards in there that you know the academy.

Michael Mackniak 6:19

She's being humble, folks. Look her up. She's got more awards than I than I don't know what. She's got lots and lots of awards, degrees, certifications, accolades, people from all over the world love this woman. I understand why. And as she's going through her litany of things that she does, I'm thinking to myself, when the hell do you sleep? But I already know she doesn't.

Victoria Cuore 6:45

I don't.

Michael Mackniak 6:45

If her I'd I'd swear she was a vampire. Um

What Happens During A Crisis

Michael Mackniak 6:49

you brought up a point, and I brought I say the same thing about when there's a crisis situation happening in the community, you know, and my work centers primarily around folks with mental illness, and and I like to say the 10% of the population that takes 90% of the resources because they're very folks in in in tremendous need. You know, when you when you respond to a crisis situation, especially one like you're describing, or even you know, one that I'm describing, you know, three things can happen. We can nothing can happen, and the situation could be quelled and calmed down.

Victoria Cuore 7:26

For then, yeah, for now.

Michael Mackniak 7:28

For now, right? Or you know, the individual can be redirected and we can go our separate ways. Or and unfortunately, in some situations, people need to be arrested, and in some situations, people need to be hospitalized. Correct. You know, and as you said, the best situation, well, maybe that's not always true in the case that you're describing, but we really want to try to, you know, my my role is to really try to keep people in the community and to have services in in place that can help them to stay in the community, which is really what we're about. And, you know, as you said, provide those resources to folks so that they can feel a meaningful, fulfilling life, whatever that means to them. And and I think so, so that's where our alignment comes in, right? And that's where our our paths cross and and continue to cross. And in my introduction, I I kind of I kind of blew it. I, you know, it was a spoiler alert, and I said, we're teaming up, we're teaming up with This Is What It Takes. I talk a lot about competence, doing work really well so that you make it look easy. You make this crazy chaos that you that you've made for yourself look really easy.

From Surviving To Thriving Support

Michael Mackniak 8:51

But what is one thing you think it takes for survivors or folks struggling with chronic illnesses or caregivers? What does it take for them to move from surviving to actually thriving?

Victoria Cuore 9:07

Support, an ear, someone that will either just shut their mouth and be there and just listen, or just hold their hand, let them know they're not alone, let them know that they are also loved because a caregiver is giving all they have and then some. I don't think a lot of people who haven't been in that particular situation. I've been a caregiver, my daughter has had 54 surgeries. We lived in the NICU for six months, and so I've been a caregiver of her and I still am. And then I myself having over 120 surgeries and I fight. I've been nicknamed The Pit Pull because I come in there and I advocate and I get the services that are allotted for our patients, for our people. We're not a case number, we're not a 10-minute waste of time, and that's what irritates me so much. It's when a person takes 10 minutes for themselves and realizes I need to decompress, I need a moment to myself to breathe, I need to understand that there is a lot out there I don't know. And that instead of jumping the gun, like load yourself with information and resources and things that you might not know. And that is what's so important is because survivors and caregivers, they go in and what I hate about like our court system is you go in there as a survivor and they they they re-assault you on the bench. Like it's they re-attack you, right? And instead, here's the other guy sitting there just as quiet as can be because his attorney said, just sit there and look, you know, like a human being. But we're trying to prove our truth. And it's the same thing, it's the exact same thing metaphorically when it comes to a caregiver, let's say a spouse, child, parent is sitting there watching their child or their loved one in this situation, and they're trying to say, This isn't normal for them. This isn't their norm. Why don't you talk to me? Why don't you let me tell you? Just don't immediately meet them for the first time in three minutes and sedate them. Let's hear what's going on. And so quickly we hear, Mike, that they say, nope, they're out of control. We're gonna sedate them and they're over 18, so we're not talking to you. So let's put in a medical power of attorney, which now that we're partnering up, I offer. We can do medical power of attorneys where they can go in over the age of 18 and say, you are gonna talk to me. Advocate for your loved ones, advocate for your children, and say, You're not gonna know the root of the problem if you sedate it. It's not a band-aid. That's why I always say I have a blueprint over a band-aid because a band-aid is temporary. We need a solution for the problem. And the problem isn't the patients, the problem is that the staff doesn't have the other spelling of the word patience, and that's a major problem we have.

Michael Mackniak 11:57

Well, and and that's I I think that's true. I I agree a thousand percent. And there's a lot of points that you made that I want to touch on. But you know, as I say, I I try so hard not to beat up on the doctors, the nurses, the social workers, the care, the caregivers, the case managers. Because just like us, they're stuck in a system too. You know, their hands are tied in a lot of. I mean, listen, there's a lot of crappy workers out there. There's a lot of crappy workers in every field, no question about it. But sometimes, you know, well, I I have to discharge this guy because my administration says we need that bed because Medicaid's not going to pay past such and such days. And, you know, and that's that's just a crappy situation all the way around for and believe, you know, that social work[er] doesn't want to have to be in that position. But a couple of things. I think that you were spot on when you talked about folks feeling like they're not alone in the journey that they're on, whatever that may be. And however we can help them to get that feeling and to feel supported is huge. I also agree with you that folks have to put themselves in a position to be supported and be supportive of others. And I know you hear it all the time, but there's no dumb questions. It's you know, such a old adage, and I hate it, but it's true. And and there's in and if you have a dumb question, ask it anyway, because the guy next to you may be thinking the same thing and he's embarrassed or afraid to ask it. And he's gonna learn from that answer just as much as you are, but he wouldn't he wouldn't learn it if you're both sitting there afraid to ask. Uh I do also offer courses, and we will continue to offer them through our resource, our Mental Health Resource Network and the Care Coalition. And in there, I'm specific about the various types of fiduciary roles, as you talked about powers of attorney, conservatorship, guardianship, etc. So we have a lot of that that we're combining together. And one of the things that's important, you're in a totally different region of the country than I'm in.

Victoria Cuore 14:05

Right.

Michael Mackniak 14:07

And that's great. But you're also, I mean, I I've got a I'm international, you know. I I have friends in Canada. Oh, yeah, no, I know. That's what I was about to get to. You are way more global and more international than I am. But but I think it's important that we say that we're we want to bring in professionals from around the globe to help us contribute to this this effort that we're putting in together. We

Advocate Upward And Think Globally

Michael Mackniak 14:36

gotta break out of the local mode, think outside the micro of where we live, and and because the the systems and the services and the issues that we're talking about are not micro. So, how and why do you think it's so important? And why do we have to look outside of our little bubbles when we're looking for resources or advice from professionals or whomever?

Victoria Cuore 15:02

That's a great question, Mike. I'm glad you asked that because there's so many people who don't understand and they rely solely on what is being said to them by the people in front of them in the crisis situation. And, you know, you do have some great caring people. They're few and far between. Then you have the people who see the paycheck and the checkout time, and that's it. And you need to advocate. If you have someone that won't hear you, go over their head. You know, you're not gonna get to the top of the ladder by being on the bottom ring. Like you're just not. So you have to go above it. And the thing is, is that whether you're in Canada, Costa Rica, California, New York, wherever you are, we're all still human beings and it's about human dignity. It's about the fact that it's respect. And I treat you with respect. I'm asking for you to do no different. So that one day, God forbid, could be your loved one sitting there, and you could be sitting in my seat. So you need to be able to be there and understand that we're all here and we all have really crappy days. We all have great days, but right now I'm in a really bad day and I need someone to help look after my loved one and give me some guidance. And a lot of times, like you can go on social media and you can find social media will tell you every president we've ever had is a great president. And we all know that's crap. Like we all know that's crap. So you know, you go on there and even in AI, they tell you to check your facts, right? Because it's not always correct. So, how do you do this? How do you, and you know, yes, there are great doctors. No, there are some that aren't. But a lot of them, there are some that get kickbacks from the pharmaceutical companies for using just their brand. And so instead of taking a moment, reading their chart, learning maybe they have allergies or maybe that they have something that's gonna cause them a chemical reaction when you give them something. You can't just see someone walk in the room and say, All right, let's sedate them, you know, without even getting a history, get to talk to somebody. And here's a really powerful thing. And in my family, I'll tell you this. I'm never one to scream. I've never raised my voice, even after what I've been through, because at the end of the day, in one year, 10 years, 30 years, you can't erase that. Pencils have erasers, yes, but you can't erase how you made someone feel. And if you talk to them with respect and they'll get irritated because they're gonna want you to raise their voice, even at the moment when you're dealing with a loved one having a crisis moment and they're yelling because they feel unheard, their brain is in a chemical imbalance. It's almost as like they're in a tornado in their brain, and it's not their fault. And they're just they're scared, they're stressed, they're in fear, they have anxiety, they it's it's a whirlwind pool of emotion and they are scared. It's new, or it might not be new, it might be a different level than they're accustomed to. So instead, talk to them, not at them. Don't try to put your hands on them. You know, if they're standing up, sit down and say, come sit by me, you know, lower your voice, show gen, show genuine compassion. These are things that you don't really find anywhere on, you know, the internet or Google or whatever search you're looking for. And that's why I absolutely love that we have partnered together because we're gonna bring all of this to everyone. We're gonna let them know how to help themselves, how to help their loved ones. And it needs to be global because at the end of the day, treat people the way you want to be treated.

Michael Mackniak 18:25

Yeah, I couldn't have said it better. You know, Sara, who you met today, is really fond of saying, you know, what if that was your sister in there, right? What if that was your brother in there? How would you expect the the care and to be going at this point? So we're creating our Mental Health Resource Network because we've acknowledged that very often we have caregivers and survivors and and folks that are suffering with prolonged and chronic illnesses that feel like they're they're on an island. And we clearly don't want that, right? We don't want people to feel alone. We want them to feel that they could be not only go to a place that has resources, real resources. I say real resources in real time for real life experiences, but they could also be, you know, if they're part of that Facebook group, they will necessarily be part of our Care Coalition, which to me is a movement of people. Uh I think, I think maybe it's a grassroots movement, but I can be, but it can be very globally thinking, outwardly thinking, because I really believe that there's a ton of us out here that that believe, like you and I do, that things are broken and it ain't gonna get fixed by us relying on bureaucracy to get it fixed, because it it's proven that it hasn't and it won't. If anything, it's gotten worse. It's really truly about us and uniting a voice and uniting people through whatever whatever channels we have in our ability to do it. But I I talk about the idea of folks who are learning to advocate, they're learning to go above somebody's head, like you just indicated. And I I want to really encourage people to be part of the Coalition, be part of the Resource Network, so that we can all learn to talk the same talk, and we could all learn from the middle up, right? And and I want us all to uh lead even if we don't have a title. Does that make sense?

Victoria Cuore 20:43

It makes perfect sense. And titles are just names, they're not really a reflection of who you are.

Michael Mackniak 20:48

Yeah, well, and basically, I mean, I'm a lawyer. By saying that, I

Lead Without A Title

Michael Mackniak 20:52

alienate half the room the minute I open my mouth and say I'm a lawyer, right? I mean, half the people hate lawyers, half the people are okay with them. Nobody loves them, but you know, necessary evil on this way. But how do you see us or yourself? What is your special sauce for empowering the average guy out there, the average person in the community to become that leader, the central folk, the necessary central focal point of their own journey in the journey for their family and getting themselves straight and protecting their loved ones?

Victoria Cuore 21:28

That's a big question. It just depends, honestly. First of all, I want to tell everybody, no matter where they are on their journey and their and their road of recovery, even when you have gone through mental illness or abuse of any kind, you're still in recovery. And the thing is that you'll always be in recovery, but you're on different days. You're on different phases of the recovery. And kudos to you. I am so proud of the very first step that you've ever taken and realizing that you're worth it. Don't just give up because you're giving up not only on yourself, but those that love you. And they are out there. Those people are out there. And if you don't think you have them, come to Mike and I because we will show you that you do matter. And it's, I tell people all the time, you know, I even work with the abusers, the people that have been aggressive and abusive. And people ask me, how can I do that after what I've been through? And the thing is, is that I tell everybody, you know, they keep saying it's so dark and I feel so alone. And I tell them that tiny little flicker of light will start a wildfire. It's going to make a difference. It can be done. And the thing is, is I've I've done the research, I've done the schooling, I've done the certifications, and I've lived it. And living it has taught me a gazillion times more than a textbook ever has.

Michael Mackniak 22:37

Well, absolutely.

Victoria Cuore 22:38

Right. And the and the thing is that come to the Care Coalition, come to our Mental Health Resource Network. You can come to either of us because we're going to be live. We're going to have Q&A sessions. We're going to have support groups. You can meet other people who are in your journey with you at this point in time and you have a sounding board. There's no dumb questions. Ask a question. How do I do this? How do I do that? And get clarity. Get actual, truthful answers that help you gain clarity and growth in your caregiving or in your surviving. And then you don't just survive, you thrive. I tell people all the time, all of those scars you have. And I I've been told I look like Freddie Kruger and the elephant man had a baby. And I have been told this. And so when you hear that, I look down and I'm like, you know what? These are scars of how strong I am. And they're my scars of warrior. That's how much they

Small Steps That Build Confidence

Victoria Cuore 23:35

are. And you can go through and just learning step by step, even the tiniest little detail. Like I would start learning five things a day or two things a day and just start in one general subject. Like, you know, for instance, if if you're caregiving and say your child has a feeding tube, then learn how to is it a feeding tube or is it a GJ tube? Does it go through the jejunum? Is it something that you can change? You know, do you put the water through the balloon and fill it up? These are things you can start learning little by little every single day that better yourself and better your care for your loved one. And so just starting in the beginning, you become a beginner, but then you become an advocate very quickly because you are learning. And what I do, and I tell everybody, everywhere I go, I have a pad of paper and a pen or a pencil, and I write questions down. And I go in there and say, you know, I should have asked that. And I'll write it down for later. And then I get the answer to it. And I am a sticky note queen. I have sticky notes everywhere. And it's to have to remind you and then put a sticky note for yourself on your bathroom mirror. I've got this. I know more today than I did yesterday. I know more today than I knew last week. And watch how your esteem grows.

Michael Mackniak 24:51

Yeah, that's a that's a good trick. I've I've heard that one before. You know, just put it somewhere where you'll see it, even if nobody else understands what it means. Yeah, it's a it's a good reminder to yourself. It's a good affirmation for yourself. And one thing, you know, about the learned or lived experience, learned and lived experience is really powerful at making you a better advocate because you know you you you you become uh appreciated, you become needed. I so many times you brought it up earlier about unfortunately our systems of care shutting out families because a child is over 18 or because the husband never signed a release of information or released a talk or whatever for whatever the reason may be. But uh very often, I mean most of the time actually, not very often, but almost all the time, the family is the best resource for information, the best resource for the history, the onset of whatever illness it might be, or the onset of the abuse and what was going on, what interventions were tried, what did and what what worked and what didn't work, what should we not try again, what should we try again? And you know, one tool that I've developed and I'm really happy about is our Care Navigator Journal that helps not only track day to day to day and into the future what we're doing, it also helps to sit back and engage in the overt activity of actually filling out forms and and getting your mind around the case, right? Your your family's case, your family's journey. And and the act of doing that is very powerful, it's very empowering, and it's and it really helps. So, you know, my one resource I would give to people is this Caregiver Journal or or the app that I'm designing that goes along with

Power Tools And Emergency Room Hacks

Michael Mackniak 26:48

it. Do you have one powerful tool that you think of as your go-to recommended tool for people? Or I mean you got so many.

Victoria Cuore 26:56

Yeah, and I don't want to compete with you. I I have a a caregiver book that I designed years ago. And it's not just that, but I don't want to talk about that because I I would rather them go to yours. But something so simple as you know, if your child has a lot of allergies, get an allergy card and have it laminated and put it next to their insurance card. Because when you're in there taken by ambulance and you're like watching your child, just hand it to them. Just, you know, hand it to them right off the bat. Those things are important. You know, I tell people all the time to put a little note in your wallet on the insurance card. Just breathe. Just breathe. Take a breath. And you're gonna see it when you pull that insurance card out. You know, they need you right now, and you need to be at your best. So take a deep breath, count to four, release it, count to four.

Michael Mackniak 27:39

And you brought up a good point before, too. And you know, never mind the people who are in a decompensated mental health state. But how about the person who has gone through abuse or the person who just got in a car accident? You said before, you know, their mind is not working correctly at that given per that given moment. So when you are in a crisis mode, when you are in panic mode, you are not thinking clearly. So having these little cues, uh especially if you're you know, especially if you're in an ongoing caregiving situation, like you have you are, many, many of our listeners are. If it's not crazy, it's not weird to have these little cues around your house and you know, your laminated checklist of things to do or not to do in a crisis. When is this actually a crisis? When is it not a crisis? I mean, Vicky Kind, who is a bioethicist out of California, tells a story about a woman she knows who was sitting down at the end of the day having a glass or two of wine. Crisis got the call, crisis had to get in her car and go to the to the hospital. She grabbed her car keys, ran out the door, speeding, got pulled over, had had two glasses of wine. Cop was questioning her. She didn't have her pocketbook because she ran out the door so fast. And it's like, man, that just adds a whole layer of hurt onto that poor woman's day. But the point being, slow down, take a breath, you know, and and and follow your cue cards, follow whatever plan of action you have the map before you go into the woods.

Victoria Cuore 29:18

Yes, yes. And you know, the another thing I want to touch on is like our daughter is, you know, an adult, and but mentally she's not. And when we go in somewhere, they immediately start talking and they don't even listen. If somebody comes in an ambulance and physically they're over the age of 18, that doesn't mean there's not a guardianship in place. It doesn't mean that, you know, mentally that they're not there. And you know, another little trick I'll tell everybody, and I can't tell you how many times people have come back to me and said, Oh my God, Victoria, this was the best thing you could have ever told me. Next time, and this is another thing Mental Health Resource Network is gonna have an abundance of everywhere, is next time, God forbid, you go to the emergency room. And most people live and they go to the same children's hospital or they go to the same regular hospital or whatever. And this is going on. You go up to them and they it all this is going on, they hand you a buttload of forms, right? And you're like, right now, really, I can't do anything until I sign these. Get them, wait about two minutes, go back and say, I messed them up. Can I have another copy? And you only do this the one time. And I tell people this, and people realize they're like, that was the most genius thing I've ever heard. Take the copy that you haven't written on, put it in your bag, fill out the other one, turn it in. When you get home, make copies, make copies of it filled out and have them already filled out. Just do not date them, do not sign and date it, just don't date it. And if there is something going on, like you know, with your individual loved one or child, leave a space up top. So if something's happened since that last visit, you can put it in there and just say, I, you know, they're not gonna stress you out about skipping a space, but fill it out and keep it in your bag with you, keep it in your purse. I have it, I used to have an emergency kit that I carried everywhere with me, and I had like 30 of them in there.

Michael Mackniak 31:01

And you just what that's just like beautifully diabolical on your part. I love it. What a great idea. I mean, and and I will say that maybe not in an emergency situation, but you know, in the in the planning stages that I've been involved in on very high levels with lots of lots of uh money spent in education, so to speak, right? They love a really good plan, a real good timeline of events. And so that's that's beautiful. That's a great uh little hack there.

Victoria Cuore 31:34

Yeah, so I love doing and I tell people do it. And they I cannot tell you if if it was 500 times, it was once when they said, Oh my god, you have no idea, because they're like, Oh, you can't go back to you fill out these forms, and you just put them on the counter and go because they can't touch you. It's the same

Schools IEP Gaps And Accountability

Victoria Cuore 31:47

thing. I think another thing, another avenue you and I need to talk about down the road is doing IEP. And I am a certified IB IEP advocate, where we talk about, you know, the mental health in schools for kids because they're not being held accountable for it. And the county and the government provides funding for each individual child in the special needs sector, but they're not giving them the service that they are due.

Michael Mackniak 32:10

And and and I can speak to this point for a long, long time because I've been doing expulsion hearings in schools for 20-something years. And very often I see situations where are you kidding me? This kid doesn't have an IEP. Really? Okay, if you say so, I mean we're moving on, but we that's a whole discussion for another day. But yes, um that is all right. So we've talked about a ton of stuff.

The Care System’s Cold Truth

Michael Mackniak 32:39

We've covered a lot of real hot button topics, but I think one of the things that I like about this discussion already that I don't usually get into as much as you and I are getting into it here and and every time we talk and what we're planning planning for the uh Resource Network is the the real life answers. But what is one cold hard truth, what's one cold hard fact that you have seen in our current mental health system, medical care system, recovery-oriented systems of care that convinced you who let's make no bones about it, you don't need to get involved with anything else. You love it, you love the work you do, you are uh uber successful in your own right, but what is this one fact, what's the one gleaming, glaring uh uh problem that you saw that says, I really need to help to create a new resource network, a new coalition, a new partnership in in this. I'm just I want to know the why. Why the why the heck are you doing this? And and thank you so much for doing it with us. But but what is it that touches you about it?

Victoria Cuore 33:59

I love fighting for the underdog. I love watching them succeed. I love watching them go from I'm gonna give up on myself, I don't care anymore, nobody loves me, it's my fault my parents are divorced, to a high school graduate, to a college, you know, person. I had somebody who threatened suicide, and I've stayed in contact with them for years and years, and now she graduated nursing school and she works at a children's hospital and she's thriving and she's amazing, and and I love that. But to go in and, you know, these individuals feel like nobody's in their corner, nobody understands it. Everybody looks at them like, oh, you're such a hassle, and there's something wrong with you, and I don't want to get near you because you have the plague and and it's contagious and it's this and it's that, and it's not, and it's not. And everybody needs somebody who's gonna say, I believe in you and I support you, and I'm here. And they have to mean it, Mike. They have to say, I mean it. And the one thing we have, money is not relevant. What you drive is not relevant, where you live is not relevant. What is relevant is the one thing we always have, and that is our word. And the one thing Mike will tell you is that I am a person of my word. And when I say I'm gonna do something, I'm gonna do it. And I do it a little to the extreme. So yeah.

Michael Mackniak 35:10

Yeah, you over, you over-deliver, that's for sure.

Victoria Cuore 35:13

Well, and the thing is that I will go to the hospital at 9:30 at night and advocate if I'm asked to. I will go at 6 a.m. in the morning and sit there and hold somebody's hand while somebody is in surgery or their loved one is standing out there while their loved one is going to be taken for detox. And, you know, the thing is that no matter how escalated you get, you can de-escalate the situation. You just need someone to believe in them. And when they're sitting there and they're having one of these episodes, like they feel like nobody's there. I mean, I can't tell you how many times I laid on a floor and wished to die. And it was because my whole, I was bleeding out of places that blood shouldn't come out of. And I had this little kick remind me, hey, I'm here too.

Michael Mackniak 35:52

And it was like little kick was the baby in your belly.

Victoria Cuore 35:55

Yes. And that's when all my abuse transpired. And it was, how can I be this mom? I can't be this mom. I'm not this person. And you know what? You give that person as much power as you allot them to have. And I realized that this piece of crap will never have that power again. And that's how I went for it. And when I go and see these other people, I see in their eyes, no matter what kind of episode they're having, it's pain. Whether they're acting out, it's because they feel like they need that attention. It's genuine cry for help. And most times people just want to brush it off as quickly as possible, sedate them, write a script. Oh, you're on the spectrum. Oh, let me give you this, let me give you that, and call it a day. I want to get to the root of it. I want to help you every step of the way. I want to give you guidance and tools and I support and I do therapy and I listen to patients and I help them every step of the way. And it's, I'm with you from here to forever. And I'm still in contact with people I started 20 years ago with. And for someone to know and remember things, like I'll reach out to someone and say, hey, it's your birthday. How are you doing? And they're like, how do you remember that? And it was like, because you're touching my life. And what is so ironic is the fact that I'm doing this because I know it's my calling. It's not a job, it's it's a calling because I know what it's like to be there and have no one. And I don't want anyone to experience that. So to have someone who will look you in the eyes and say, you are not alone and just say, I'm here. What do you need from me? Which I promise you, a hundred percent of the time, no matter what mental illness that is going on, whatever tragedy is going on, whatever PTSD moment, nobody is saying, what do you need from me? No one is saying it. Even in the hospital situation, they're not saying it. It's sedate 'em, you know, restrain them, this, that, and the other. And that's not helping. That's not helping at the moment. So just taking a step back, getting down to their physical level, whether they're sitting or laying in a gurney and sitting down and get to their level and just look at them and I ask them, can I hold your hand? I ask permission because everybody else is hands-on without their consent, right? I don't need your consent, I'm holding you down. I don't need your consent, I'm restraining you. So I'll say, Can I, can I just hold your hand for a minute? And we can just sit here. Just sit here. It's so chaotic and crazy. You know, let's just enjoy the silence for a minute. And then once they have calmed down, then I'll sit there and be like, wow, you know, I I am I am here for you. And I know that right now it might not seem that way because everybody else is yelling and barking and giving orders, but I'm still going to be sitting here when they go home. And that is what makes such a huge difference.

Michael Mackniak 38:33

Well, I mean, just that that human touch is, you know, a warm, comforting human touch, not a punch human touch, is just that means a million. I should I should say, everybody, that Victoria's memoir, Who Kicked First, is you know, one of these globally recognized books. And she's the accolades are are insane from it, and and her career is just unbelievable because of it and because of who she is. Between she and I, we've made a a pact that I shouldn't, should not, and will not read it. And the more I think about it, I like that pact because we are equals, and I don't want anything to impact that uh relationship that we have. And and as as time goes by, I learn more and more about her struggle. But as you guys just learned, she was abused while pregnant with with her daughter. Uh and that that's a big part of why she survived, and and you know, threw herself against it and said, No, I'm not, I'm going to live through this because I have to. And you guys should all by all means, she's not holding you to any kind of promise. So she's she wants you to promise that you will read her book. So go out and get it. Who kicked first by Victoria Cuore. When you think about our our Facebook group and our Care Coalition, and when the people that are walking into it, joining it, sitting on a Zoom meeting, staring at themselves in the face, like we do pretty much all day.

What Acceptance Looks Like Here

Michael Mackniak 40:12

Um what is it what what do you what do you see? What do people feel? What do you want them to feel is available to them by virtue of the Network and the Care Coalition and our work together?

Victoria Cuore 40:32

Acceptance. Acceptance. I want them to come in and feel this is a place I belong. This is a place where I'm not judged and people aren't looking at me like I I am disgusting, and there's something so wrong with me, and I don't deserve to be here, and I'm a dark cloud. And you know what? Every dark cloud has a silver lining, and I promise you, I'm gonna show you your silver lining, and so is Mike. And to have an attorney come in and and do Q&A's, and I will do Q&A's and to sit there and and just be there and I will do exercises with the support group and just to feel accepted and welcome and in there with people that are going around the same thing you are. I mean, you know, I know so often when people are sitting in a waiting room, they want to talk to other people. You know, what are you in here? You know, are you how's the doctor or how's this? But now you're already in here with a group of people like yourself, and you can make friends and you could make people you can go and talk to and just have that moment of silence. There's so many things that I have not even talked to Mike about of things that I want to do. Like I have people say, I wish you would do, you know, like a motivational thing every morning for me. I wish you would send us out something every morning just to remind me of how great we are. And I guess I'm telling him now that's something that I want to do. Like I want to, you know, be able to say, hey, every morning I'm gonna send to you something that reminds you of how amazing you are. So on the days that you have a moment that isn't so great, you can go back and reflect on those. And, you know, the one thing I do want to say about Who Kicked First, the very opening of the book says, please do not judge me for my grammatical errors, because this book was not written to ever be released. I was sitting in a wheelchair, my daughter was in a medically induced coma, and I was interrogated left, right, and center by the military, the CID, the police department, everybody who watched him break your nose, where were you on the installation? What time of day was it? What was he wearing? And I'm watching my daughter fight for her life. She was coding every single day. She was having 20 seizures a day. She was like blue. They told me she wouldn't make it. I had to make the decision, which took not even a second to decide, to give her a tracheostomy, which is the tube in her neck for her to breathe out of. And she had it for two and a half years. So I didn't get to hear her as a baby. I didn't get to hear the crying and the all of those things. But I don't regret anything because we shared milestones that most people would never have. And we don't take one minute for granted. And so to go back and look at that, the Who Kicked First is as raw as it can be, Mike. And it is just, it is graphic and it is, it is like, and I put it out there. And the first time I did a speaking engagement, I had someone say, Your book saved my life. And I said, Who am I? I am, I am such an ass because here I am wondering about judgment. And this person just told me that your book saved my life. And it was like, I feel like I'm a millimeter tall because of that. And I've had people say, Well, are you going to revamp it? Because it's so raw. I mean, it's not in paragraph form, it's not in this form, it's not, it's in a journal form. And I said, No, because I think if I did, it takes away the authenticity of the book.

Michael Mackniak 43:32

It takes away the message is in the mess, right?

Victoria Cuore 43:35

It is exactly. And so the other books, they're they're in the correct form. And you know, and important.

Michael Mackniak 43:41

You spelled your own name right.

Victoria Cuore 43:42

I did. I did always spell my name right. But yes, but you know, to to answer, I I want people to look forward to saying, you know what, I cannot do anything Wednesday at 8 p.m. if that's the time we we do a Q&A or a live support group. I can't do anything at this time. This is where I'm gonna be. I'll do it. But you know, I want people to look forward to it. And I tell people all the time, you know, it it just came out that I got this award. Eric Winter put it out, who I love, the actor Eric Winter put it out as number two most empowering woman and empowering leader of 2026. And I laughed. At first I thought I was being pranked. I thought somebody's pranking me. It's funny. I thought my husband did actually. And then I was like, how would that happen? But it's not because of what I do. It's because of who I get to help. And those people see what I'm doing. And I use those awards and everything else to help me get out there in front of more people. Because unfortunately, so many people need us, but they don't know how to get to us. They don't know how to come to us. And that's what I want to change. I want to make sure that people know that we're here. And I tell people all the time if you email me, you get me. You don't get anybody else. You're going to get to me. If you reach out when I'm doing, you know, support and therapy, you get me. You're not going to get, I'm not handing you off to somebody, no matter what. You know, I have people who will text me everything they do during the day. I'm off the floor. I did this. I did that. Thanks for listening. And I write back, I'm so proud of you because you got up off the couch today. Forget the chores. Forget the chores. At one time you locked yourself in the bedroom. Now you're on the couch. And some people might be like, so what? You went from a locked door where nobody could get in to the living room on the couch. That's huge. That's huge.

Michael Mackniak 45:32

Yeah, one time, one time Angela and I had a meeting. You you met her today too. Angela and I had a meeting one time where we we went out to a group home and we sat down at the kitchen table. And this gentleman came out and he sat down with us and he talked to us for like 10 minutes. And after the 10 minutes, he just said, Thank you, I gotta go now. He got up and and just walked away abruptly. And I was like, Well, okay, well, that's that's that. You know, this guy had severe persistent mental illnesses. And as we're walking out, the uh the head of the the group home who later become uh became an administrator on the high level in the Department of Mental Health said to us, You don't understand what just happened here. That guy sat down at a table with you and spoke to you for 10 minutes. We can't even get him to come out of his room, like you're saying. So, and that was my first intro to that, where it's uh baby steps, Bob. You know, it just you don't know how how big these uh these mountains are that you have to move. And if you if you get a little a little a little quake, it's it could be humongous. But I'm going to uh do to you right now what you did to me yesterday or the day before. I can't remember.

Victoria Cuore 46:42

Oh no.

Michael Mackniak 46:42

So payback's a bitch. Uh if

One Year Vision And Bigger Training

Michael Mackniak 46:45

we then're one year ahead, Victoria. We're right in the scene, one year ahead. What's the scene that you've written in your mind for the work that we're gonna do with Mental Health Resource Network, Care Coalition, and everything else that we are embarking on in earnest? This week and next week are gonna be monsters for us. And how many people do you want to reach in a year?

Victoria Cuore 47:10

Do you think we're still working together in a year?

Michael Mackniak 47:13

Yes, do you?

Victoria Cuore 47:16

I I hope everybody looks at his face because he's like, What? What are you talking about? How many I want to reach in where I want to be? I I actually love the idea of doing speaking engagements. I have a few already on the books that I'm doing for the year. And I don't put a number on anything, Mike, because people anybody can go and listen to a podcast, but if it's not advantageous for them at the moment and they're listening for whatever reason, I would rather look at how many people we can help and have an authentic number. You and I are in line to do something that is a blessing beyond recognition, and that is to help with creating books for schools about mental health. And that is something that is a dream, like to be able to have that offered and to do that at the level and the comprehension level of that age of a child or teen and where they can feel like they matter and they feel like they're being hurt because they don't, you know, we both have kids that age and they go on their room into hell with you and shut the door. And well, Faith doesn't, but you know, and and that's the end of it. And they don't want to tell you what's going on. And and to know we can give them books that kind of help understand where they are and help with that, and then to have groups, teen groups that will come in and do mental health support groups is amazing. And to have that opportunity and to author some additional books, I think would be amazing. The one thing that is absolutely non-negotiable, and I've I've said this for 20 plus years, is at the end of the year, I'm still standing. And I'm and you know, and the thing is is that over the years I've lost more and more parts. And and I'm like, you know, some people are like, I gotta plug in my iPhone, I gotta plug in my tablet, I gotta plug in my whatever. Like, I have to take off my glasses. I have I don't wear my prosthetic but arm, but I have to take out my hearing aids, I have to do this, I have to do that. I will still be here advocating. I haven't given up ever. I was told I had a 2% chance of survival, and I said, that's better than one. And so as long as I have a voice, I'm gonna be talking to those that are voiceless until they become a whisper. And then I want them to join forces with us and start aligning with us and helping us help others because paying it forward is the best gift you could give and ask for absolutely nothing in return. And it comes full circle. I would love to be on stages with you. I would love to go out and, you know, even do schools, go into mental health facilities and go in there as well. Hopefully, write some curriculums for them as well and for caregivers. I think courses need to be done for caregivers. One of my biggest, biggest things, and and I work with law enforcement all the time when I'm in on these scenes, is that I would like to write courses that we implement into law enforcement training. Because as an officer, you're required to do 20 years, 20 hours a year or year of in-service training. And that's first aid CPR and you have to re-register your firearm. But I think that they need to have mental health training because when you go on the scene, if you have someone who's autistic, you can't put your hands on them, but they don't know this. How you handle these situations, de-escalate the situation, there's no reason to taser them, right? There's so many things that I think that are in the cards and align for us. I see well over a year. I can tell you five years, I can tell you whatever. But I'm hoping that we make it where a year from now we're celebrating one year of holding it together. And I think that would be amazing because what you're doing, I don't think you give yourself enough credit for because it is so desperately needed. And I felt that connection to you when I first met you. And I immediately started, and I was like, this has to work, this has to work. And it like just to see what it has done in 10 days is more than some people can say they've done in a lifetime.

Michael Mackniak 51:04

And I thank you for that. We all thank you, and we all hope and pray that you are here with us in a year, five years, ten years, because I'm not planning on going anywhere. We we we need you, the world needs you, and we're just lucky to have you. So, Victoria Cuore, thank you for being here on the Holding It Together podcast. And I'm sure I'll be talking to you probably within the next half hour, hour, something like that.

Victoria Cuore 51:29

Absolutely. Thank you guys for having me. I appreciate it.

Michael Mackniak 51:37

I want

Care Navigator Journal And Closing

Michael Mackniak 51:38

to take a second to talk about something that many of us in this community deal with every single day, and that's the mental load of caregiving. If you're like me, your brain is probably filled with appointment dates, medication schedules, and a never-ending list of questions for doctors. It's exhausting trying to keep it all in your head while also trying to show up emotionally for the person you love. That's exactly why the team at the Care Coalition created the Care Navigator Journal. This is not just another notebook. It's a tool specifically designed to help you to stay organized and more importantly, to help you feel a little more in control when things start feeling really chaotic. It gives you a dedicated space to track medical updates, manage daily tasks, and even process your own thoughts. Imagine such a thing. Your well-being matters just as much as the person that you're caring for. If you're feeling overwhelmed and looking for a way to stay organized, I highly recommend picking one up. You can find it right now at www.carecoalition.org slash holding it together. Again, that's carecoalition.org slash holding it together. It's a small way to start holding it all together, one page at a time. Alright, let's get back to the show. Today was a big one, guys. We've moved from talking about the problem to building solutions. Victoria Cuore is gonna be a frequent face and voice as as we roll this all out. We roll out This Is What It Takes and the Mental uh Health Resource Network. Don't forget, your character isn't just an individual trait, it's a collective one. It's it's what happens when we decide that we aren't gonna let those wolves in that broken system win and keep us down. We're building a bridge, and we want you to come across it with us. We you you don't have to hold everything together alone anymore. So join us on Facebook at the Mental Health Resource Network. Be part of the Care Coalition platform, and until next time, just keep holding it together. And know, know that now we're here to help you, and we're here to help you together.