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This Is What It Takes with Victoria Cuore · Holding It Together (Kinda)

• 1:16
  Michael Mackniak: Welcome back to Holding It Together, Kinda.
• 1:19
  Michael Mackniak: I'm your host, Michael Mackniak.
• 1:21
  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.
• 1:33
  Michael Mackniak: 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.
• 1:47
  Michael Mackniak: But today's gonna be different.
• 1:49
  Michael Mackniak: 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.
• 1:59
  Michael Mackniak: Victoria Cuore and I have realized that identifying the system's flaws isn't enough anymore.
• 2:06
  Michael Mackniak: We need to offer the roadmap.
• 2:09
  Michael Mackniak: Well, today we're not just gonna do a podcast.
• 2:12
  Michael Mackniak: We're here to announce a whole new movement.
• 2:15
  Michael Mackniak: 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.
• 2:25
  Michael Mackniak: Hello and welcome to the Holding It Together, Kinda podcast.
• 2:34
  Michael Mackniak: I'm your host, Michael Mackniak.
• 2:36
  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.
• 2:45
  Michael Mackniak: No sugarcoating, no clinical jargon, just real talk about the hospitalizations, the medication battles, and the toll it takes on a home.
• 2:55
  Michael Mackniak: This is for the parents, siblings, the partners who do the impossible every single day.
• 3:02
  Michael Mackniak: 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.
• 3:11
  Michael Mackniak: 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.
• 3:24
  Michael Mackniak: Okay, here we are.
• 3:30
  Michael Mackniak: 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.
• 3:41
  Michael Mackniak: Victoria Cuore.
• 3:43
  Michael Mackniak: Welcome.
• 3:45
  Michael Mackniak: It's good to see you and hear you again.
• 3:47
  Victoria Cuore: I know it's only been like five hours.
• 3:50
  Michael Mackniak: Has it been that long?
• 3:51
  Michael Mackniak: I feel like it's been longer.
• 3:53
  Victoria Cuore: You missed me.
• 3:54
  Michael Mackniak: I did.
• 3:54
  Michael Mackniak: I did.
• 3:55
  Michael Mackniak: Listen, so welcome to my show.
• 3:57
  Michael Mackniak: I've started this new idea.
• 3:59
  Michael Mackniak: 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.
• 4:08
  Michael Mackniak: 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.
• 4:23
  Michael Mackniak: Who are you?
• 4:24
  Michael Mackniak: What do you do?
• 4:25
  Michael Mackniak: And what are you really doing now that that gets your juices flowing, got you all fired up?
• 4:31
  Victoria Cuore: I work with you.
• 4:32
  Victoria Cuore: That gets me all fired up.
• 4:34
  Michael Mackniak: I am that's been all of a week.
• 4:36
  Michael Mackniak: What do you do?
• 4:37
  Victoria Cuore: It's been a hell of a week.
• 4:39
  Michael Mackniak: It has been a hell of a week.
• 4:40
  Victoria Cuore: We've been I mean, you're talking like 2 a.m., 4 a.m.
• 4:43
  Victoria Cuore: Yeah, it's been and a lot has been accomplished.
• 4:47
  Victoria Cuore: 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.
• 5:06
  Victoria Cuore: 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.
• 5:24
  Victoria Cuore: 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.
• 5:32
  Victoria Cuore: So I've been doing that for over 20 years.
• 5:35
  Victoria Cuore: And then it just got bigger and bigger and bigger.
• 5:38
  Victoria Cuore: 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.
• 5:51
  Victoria Cuore: And then I want to be able to offer all tools that are necessary because I went through this alone.
• 5:58
  Victoria Cuore: And as no one should have to go through it at all, you shouldn't have to go through it alone.
• 6:03
  Victoria Cuore: And I did.
• 6:04
  Victoria Cuore: And so I started an academy where when you go on it, it says A Contagious Smile.
• 6:09
  Victoria Cuore: 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.
• 6:18
  Victoria Cuore: And it has about 150 courses in it right now.
• 6:22
  Victoria Cuore: Most of them are free.
• 6:23
  Victoria Cuore: Some of them are the most $5.
• 6:25
  Victoria Cuore: And that's only to help with the platform cost of what it costs to run this.
• 6:29
  Victoria Cuore: 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.
• 6:45
  Victoria Cuore: You're going to get full access to all the free courses.
• 6:47
  Victoria Cuore: And if there's $5 courses, you'll get those too.
• 6:50
  Victoria Cuore: So that's already there.
• 6:53
  Victoria Cuore: And then I have written over 50 books.
• 6:57
  Victoria Cuore: 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.
• 7:17
  Victoria Cuore: And that's not your fault.
• 7:18
  Victoria Cuore: And I help you find that tiny flicker of light and show you that that can start a wildfire.
• 7:23
  Victoria Cuore: And I help you through your entire journey of healing.
• 7:27
  Victoria Cuore: And there's some awards in there that you know the academy.
• 7:31
  Michael Mackniak: She's being humble, folks.
• 7:33
  Michael Mackniak: Look her up.
• 7:34
  Michael Mackniak: She's got more awards than I than I don't know what.
• 7:38
  Michael Mackniak: She's got lots and lots of awards, degrees, certifications, accolades, people from all over the world love this woman.
• 7:46
  Michael Mackniak: I understand why.
• 7:47
  Michael Mackniak: And as she's going through her litany of things that she does, I'm thinking to myself, when the hell do you sleep?
• 7:55
  Michael Mackniak: But I already know she doesn't.
• 7:57
  Victoria Cuore: I don't.
• 7:57
  Michael Mackniak: If her I'd I'd swear she was a vampire.
• 8:00
  Michael Mackniak: Um 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.
• 8:23
  Michael Mackniak: 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.
• 8:32
  Michael Mackniak: We can nothing can happen, and the situation could be quelled and calmed down.
• 8:38
  Victoria Cuore: For then, yeah, for now.
• 8:40
  Michael Mackniak: For now, right?
• 8:41
  Michael Mackniak: Or you know, the individual can be redirected and we can go our separate ways.
• 8:49
  Michael Mackniak: Or and unfortunately, in some situations, people need to be arrested, and in some situations, people need to be hospitalized.
• 8:56
  Michael Mackniak: Correct.
• 8:57
  Michael Mackniak: 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.
• 9:15
  Michael Mackniak: 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.
• 9:25
  Michael Mackniak: And and I think so, so that's where our alignment comes in, right?
• 9:29
  Michael Mackniak: And that's where our our paths cross and and continue to cross.
• 9:34
  Michael Mackniak: And in my introduction, I I kind of I kind of blew it.
• 9:40
  Michael Mackniak: 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.
• 9:46
  Michael Mackniak: I talk a lot about competence, doing work really well so that you make it look easy.
• 9:52
  Michael Mackniak: You make this crazy chaos that you that you've made for yourself look really easy.
• 10:02
  Michael Mackniak: But what is one thing you think it takes for survivors or folks struggling with chronic illnesses or caregivers?
• 10:12
  Michael Mackniak: What does it take for them to move from surviving to actually thriving?
• 10:19
  Victoria Cuore: 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.
• 10:37
  Victoria Cuore: I don't think a lot of people who haven't been in that particular situation.
• 10:41
  Victoria Cuore: I've been a caregiver, my daughter has had 54 surgeries.
• 10:44
  Victoria Cuore: We lived in the NICU for six months, and so I've been a caregiver of her and I still am.
• 10:49
  Victoria Cuore: And then I myself having over 120 surgeries and I fight.
• 10:54
  Victoria Cuore: 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.
• 11:03
  Victoria Cuore: We're not a case number, we're not a 10-minute waste of time, and that's what irritates me so much.
• 11:08
  Victoria Cuore: 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.
• 11:20
  Victoria Cuore: And that instead of jumping the gun, like load yourself with information and resources and things that you might not know.
• 11:30
  Victoria Cuore: 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.
• 11:43
  Victoria Cuore: Like it's they re-attack you, right?
• 11:45
  Victoria Cuore: 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.
• 11:53
  Victoria Cuore: But we're trying to prove our truth.
• 11:55
  Victoria Cuore: 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.
• 12:10
  Victoria Cuore: This isn't their norm.
• 12:12
  Victoria Cuore: Why don't you talk to me?
• 12:13
  Victoria Cuore: Why don't you let me tell you?
• 12:15
  Victoria Cuore: Just don't immediately meet them for the first time in three minutes and sedate them.
• 12:20
  Victoria Cuore: Let's hear what's going on.
• 12:22
  Victoria Cuore: And so quickly we hear, Mike, that they say, nope, they're out of control.
• 12:26
  Victoria Cuore: We're gonna sedate them and they're over 18, so we're not talking to you.
• 12:30
  Victoria Cuore: So let's put in a medical power of attorney, which now that we're partnering up, I offer.
• 12:35
  Victoria Cuore: 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.
• 12:40
  Victoria Cuore: 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.
• 12:48
  Victoria Cuore: It's not a band-aid.
• 12:50
  Victoria Cuore: That's why I always say I have a blueprint over a band-aid because a band-aid is temporary.
• 12:55
  Victoria Cuore: We need a solution for the problem.
• 12:58
  Victoria Cuore: 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.
• 13:09
  Michael Mackniak: Well, and and that's I I think that's true.
• 13:12
  Michael Mackniak: I I agree a thousand percent.
• 13:14
  Michael Mackniak: And there's a lot of points that you made that I want to touch on.
• 13:17
  Michael Mackniak: 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.
• 13:28
  Michael Mackniak: Because just like us, they're stuck in a system too.
• 13:31
  Michael Mackniak: You know, their hands are tied in a lot of.
• 13:32
  Michael Mackniak: I mean, listen, there's a lot of crappy workers out there.
• 13:35
  Michael Mackniak: There's a lot of crappy workers in every field, no question about it.
• 13:38
  Michael Mackniak: 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.
• 13:48
  Michael Mackniak: 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.
• 13:57
  Michael Mackniak: But a couple of things.
• 13:58
  Michael Mackniak: 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.
• 14:06
  Michael Mackniak: And however we can help them to get that feeling and to feel supported is huge.
• 14:14
  Michael Mackniak: I also agree with you that folks have to put themselves in a position to be supported and be supportive of others.
• 14:22
  Michael Mackniak: And I know you hear it all the time, but there's no dumb questions.
• 14:26
  Michael Mackniak: It's you know, such a old adage, and I hate it, but it's true.
• 14:31
  Michael Mackniak: 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.
• 14:39
  Michael Mackniak: 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.
• 14:47
  Michael Mackniak: 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.
• 14:57
  Michael Mackniak: And in there, I'm specific about the various types of fiduciary roles, as you talked about powers of attorney, conservatorship, guardianship, etc.
• 15:06
  Michael Mackniak: So we have a lot of that that we're combining together.
• 15:09
  Michael Mackniak: And one of the things that's important, you're in a totally different region of the country than I'm in.
• 15:17
  Victoria Cuore: Right.
• 15:19
  Michael Mackniak: And that's great.
• 15:20
  Michael Mackniak: But you're also, I mean, I I've got a I'm international, you know.
• 15:25
  Michael Mackniak: I I have friends in Canada.
• 15:27
  Michael Mackniak: Oh, yeah, no, I know.
• 15:29
  Michael Mackniak: That's what I was about to get to.
• 15:31
  Michael Mackniak: You are way more global and more international than I am.
• 15:35
  Michael Mackniak: 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.
• 15:46
  Michael Mackniak: We 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.
• 16:01
  Michael Mackniak: So, how and why do you think it's so important?
• 16:05
  Michael Mackniak: And why do we have to look outside of our little bubbles when we're looking for resources or advice from professionals or whomever?
• 16:14
  Victoria Cuore: That's a great question, Mike.
• 16:15
  Victoria Cuore: 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.
• 16:25
  Victoria Cuore: And, you know, you do have some great caring people.
• 16:29
  Victoria Cuore: They're few and far between.
• 16:30
  Victoria Cuore: Then you have the people who see the paycheck and the checkout time, and that's it.
• 16:33
  Victoria Cuore: And you need to advocate.
• 16:35
  Victoria Cuore: If you have someone that won't hear you, go over their head.
• 16:38
  Victoria Cuore: You know, you're not gonna get to the top of the ladder by being on the bottom ring.
• 16:41
  Victoria Cuore: Like you're just not.
• 16:42
  Victoria Cuore: So you have to go above it.
• 16:43
  Victoria Cuore: 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.
• 16:53
  Victoria Cuore: It's about the fact that it's respect.
• 16:55
  Victoria Cuore: And I treat you with respect.
• 16:57
  Victoria Cuore: I'm asking for you to do no different.
• 16:58
  Victoria Cuore: So that one day, God forbid, could be your loved one sitting there, and you could be sitting in my seat.
• 17:05
  Victoria Cuore: So you need to be able to be there and understand that we're all here and we all have really crappy days.
• 17:12
  Victoria Cuore: 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.
• 17:21
  Victoria Cuore: 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.
• 17:29
  Victoria Cuore: And we all know that's crap.
• 17:30
  Victoria Cuore: Like we all know that's crap.
• 17:34
  Victoria Cuore: So you know, you go on there and even in AI, they tell you to check your facts, right?
• 17:41
  Victoria Cuore: Because it's not always correct.
• 17:42
  Victoria Cuore: So, how do you do this?
• 17:44
  Victoria Cuore: How do you, and you know, yes, there are great doctors.
• 17:46
  Victoria Cuore: No, there are some that aren't.
• 17:47
  Victoria Cuore: But a lot of them, there are some that get kickbacks from the pharmaceutical companies for using just their brand.
• 17:53
  Victoria Cuore: 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.
• 18:03
  Victoria Cuore: 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.
• 18:11
  Victoria Cuore: And here's a really powerful thing.
• 18:13
  Victoria Cuore: And in my family, I'll tell you this.
• 18:15
  Victoria Cuore: I'm never one to scream.
• 18:17
  Victoria Cuore: 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.
• 18:24
  Victoria Cuore: Pencils have erasers, yes, but you can't erase how you made someone feel.
• 18:28
  Victoria Cuore: 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.
• 18:43
  Victoria Cuore: It's almost as like they're in a tornado in their brain, and it's not their fault.
• 18:47
  Victoria Cuore: 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.
• 18:57
  Victoria Cuore: It's new, or it might not be new, it might be a different level than they're accustomed to.
• 19:01
  Victoria Cuore: So instead, talk to them, not at them.
• 19:04
  Victoria Cuore: Don't try to put your hands on them.
• 19:06
  Victoria Cuore: 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.
• 19:13
  Victoria Cuore: These are things that you don't really find anywhere on, you know, the internet or Google or whatever search you're looking for.
• 19:20
  Victoria Cuore: And that's why I absolutely love that we have partnered together because we're gonna bring all of this to everyone.
• 19:27
  Victoria Cuore: We're gonna let them know how to help themselves, how to help their loved ones.
• 19:31
  Victoria Cuore: And it needs to be global because at the end of the day, treat people the way you want to be treated.
• 19:38
  Michael Mackniak: Yeah, I couldn't have said it better.
• 19:39
  Michael Mackniak: You know, Sara, who you met today, is really fond of saying, you know, what if that was your sister in there, right?
• 19:47
  Michael Mackniak: What if that was your brother in there?
• 19:49
  Michael Mackniak: How would you expect the the care and to be going at this point?
• 19:53
  Michael Mackniak: 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.
• 20:09
  Michael Mackniak: And we clearly don't want that, right?
• 20:13
  Michael Mackniak: We don't want people to feel alone.
• 20:14
  Michael Mackniak: We want them to feel that they could be not only go to a place that has resources, real resources.
• 20:20
  Michael Mackniak: 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.
• 20:39
  Michael Mackniak: 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.
• 21:06
  Michael Mackniak: If anything, it's gotten worse.
• 21:08
  Michael Mackniak: 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.
• 21:19
  Michael Mackniak: 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.
• 21:32
  Michael Mackniak: 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?
• 21:48
  Michael Mackniak: And and I want us all to uh lead even if we don't have a title.
• 21:54
  Michael Mackniak: Does that make sense?
• 21:56
  Victoria Cuore: It makes perfect sense.
• 21:57
  Victoria Cuore: And titles are just names, they're not really a reflection of who you are.
• 22:01
  Michael Mackniak: Yeah, well, and basically, I mean, I'm a lawyer.
• 22:03
  Michael Mackniak: By saying that, I alienate half the room the minute I open my mouth and say I'm a lawyer, right?
• 22:07
  Michael Mackniak: I mean, half the people hate lawyers, half the people are okay with them.
• 22:10
  Michael Mackniak: Nobody loves them, but you know, necessary evil on this way.
• 22:14
  Michael Mackniak: But how do you see us or yourself?
• 22:17
  Michael Mackniak: 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?
• 22:40
  Victoria Cuore: That's a big question.
• 22:41
  Victoria Cuore: It just depends, honestly.
• 22:42
  Victoria Cuore: 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.
• 22:52
  Victoria Cuore: And the thing is that you'll always be in recovery, but you're on different days.
• 22:56
  Victoria Cuore: You're on different phases of the recovery.
• 22:58
  Victoria Cuore: And kudos to you.
• 23:00
  Victoria Cuore: I am so proud of the very first step that you've ever taken and realizing that you're worth it.
• 23:05
  Victoria Cuore: Don't just give up because you're giving up not only on yourself, but those that love you.
• 23:08
  Victoria Cuore: And they are out there.
• 23:09
  Victoria Cuore: Those people are out there.
• 23:11
  Victoria Cuore: And if you don't think you have them, come to Mike and I because we will show you that you do matter.
• 23:16
  Victoria Cuore: 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.
• 23:24
  Victoria Cuore: And people ask me, how can I do that after what I've been through?
• 23:27
  Victoria Cuore: And the thing is, is that I tell everybody, you know, they keep saying it's so dark and I feel so alone.
• 23:32
  Victoria Cuore: And I tell them that tiny little flicker of light will start a wildfire.
• 23:36
  Victoria Cuore: It's going to make a difference.
• 23:37
  Victoria Cuore: It can be done.
• 23:39
  Victoria Cuore: 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.
• 23:44
  Victoria Cuore: And living it has taught me a gazillion times more than a textbook ever has.
• 23:49
  Michael Mackniak: Well, absolutely.
• 23:50
  Victoria Cuore: Right.
• 23:50
  Victoria Cuore: And the and the thing is that come to the Care Coalition, come to our Mental Health Resource Network.
• 23:56
  Victoria Cuore: You can come to either of us because we're going to be live.
• 23:59
  Victoria Cuore: We're going to have Q&A sessions.
• 24:01
  Victoria Cuore: We're going to have support groups.
• 24:03
  Victoria Cuore: You can meet other people who are in your journey with you at this point in time and you have a sounding board.
• 24:09
  Victoria Cuore: There's no dumb questions.
• 24:11
  Victoria Cuore: Ask a question.
• 24:12
  Victoria Cuore: How do I do this?
• 24:13
  Victoria Cuore: How do I do that?
• 24:14
  Victoria Cuore: And get clarity.
• 24:16
  Victoria Cuore: Get actual, truthful answers that help you gain clarity and growth in your caregiving or in your surviving.
• 24:24
  Victoria Cuore: And then you don't just survive, you thrive.
• 24:26
  Victoria Cuore: I tell people all the time, all of those scars you have.
• 24:29
  Victoria Cuore: And I I've been told I look like Freddie Kruger and the elephant man had a baby.
• 24:33
  Victoria Cuore: And I have been told this.
• 24:36
  Victoria Cuore: And so when you hear that, I look down and I'm like, you know what?
• 24:41
  Victoria Cuore: These are scars of how strong I am.
• 24:44
  Victoria Cuore: And they're my scars of warrior.
• 24:46
  Victoria Cuore: That's how much they are.
• 24:47
  Victoria Cuore: And you can go through and just learning step by step, even the tiniest little detail.
• 24:52
  Victoria Cuore: Like I would start learning five things a day or two things a day and just start in one general subject.
• 24:58
  Victoria Cuore: 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?
• 25:09
  Victoria Cuore: Does it go through the jejunum?
• 25:11
  Victoria Cuore: Is it something that you can change?
• 25:12
  Victoria Cuore: You know, do you put the water through the balloon and fill it up?
• 25:15
  Victoria Cuore: These are things you can start learning little by little every single day that better yourself and better your care for your loved one.
• 25:23
  Victoria Cuore: And so just starting in the beginning, you become a beginner, but then you become an advocate very quickly because you are learning.
• 25:31
  Victoria Cuore: 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.
• 25:39
  Victoria Cuore: And I go in there and say, you know, I should have asked that.
• 25:42
  Victoria Cuore: And I'll write it down for later.
• 25:45
  Victoria Cuore: And then I get the answer to it.
• 25:46
  Victoria Cuore: And I am a sticky note queen.
• 25:48
  Victoria Cuore: I have sticky notes everywhere.
• 25:50
  Victoria Cuore: And it's to have to remind you and then put a sticky note for yourself on your bathroom mirror.
• 25:55
  Victoria Cuore: I've got this.
• 25:56
  Victoria Cuore: I know more today than I did yesterday.
• 25:58
  Victoria Cuore: I know more today than I knew last week.
• 26:00
  Victoria Cuore: And watch how your esteem grows.
• 26:03
  Michael Mackniak: Yeah, that's a that's a good trick.
• 26:05
  Michael Mackniak: I've I've heard that one before.
• 26:07
  Michael Mackniak: You know, just put it somewhere where you'll see it, even if nobody else understands what it means.
• 26:11
  Michael Mackniak: Yeah, it's a it's a good reminder to yourself.
• 26:15
  Michael Mackniak: It's a good affirmation for yourself.
• 26:17
  Michael Mackniak: 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.
• 26:33
  Michael Mackniak: 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.
• 26:50
  Michael Mackniak: 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?
• 27:17
  Michael Mackniak: 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?
• 27:41
  Michael Mackniak: Your your family's case, your family's journey.
• 27:45
  Michael Mackniak: And and the act of doing that is very powerful, it's very empowering, and it's and it really helps.
• 27:51
  Michael Mackniak: 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 it.
• 28:00
  Michael Mackniak: Do you have one powerful tool that you think of as your go-to recommended tool for people?
• 28:06
  Michael Mackniak: Or I mean you got so many.
• 28:08
  Victoria Cuore: Yeah, and I don't want to compete with you.
• 28:10
  Victoria Cuore: I I have a a caregiver book that I designed years ago.
• 28:14
  Victoria Cuore: And it's not just that, but I don't want to talk about that because I I would rather them go to yours.
• 28:19
  Victoria Cuore: 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.
• 28:28
  Victoria Cuore: Because when you're in there taken by ambulance and you're like watching your child, just hand it to them.
• 28:32
  Victoria Cuore: Just, you know, hand it to them right off the bat.
• 28:34
  Victoria Cuore: Those things are important.
• 28:36
  Victoria Cuore: You know, I tell people all the time to put a little note in your wallet on the insurance card.
• 28:41
  Victoria Cuore: Just breathe.
• 28:41
  Victoria Cuore: Just breathe.
• 28:42
  Victoria Cuore: Take a breath.
• 28:43
  Victoria Cuore: And you're gonna see it when you pull that insurance card out.
• 28:45
  Victoria Cuore: You know, they need you right now, and you need to be at your best.
• 28:48
  Victoria Cuore: So take a deep breath, count to four, release it, count to four.
• 28:51
  Michael Mackniak: And you brought up a good point before, too.
• 28:53
  Michael Mackniak: And you know, never mind the people who are in a decompensated mental health state.
• 28:58
  Michael Mackniak: But how about the person who has gone through abuse or the person who just got in a car accident?
• 29:05
  Michael Mackniak: You said before, you know, their mind is not working correctly at that given per that given moment.
• 29:10
  Michael Mackniak: So when you are in a crisis mode, when you are in panic mode, you are not thinking clearly.
• 29:17
  Michael Mackniak: 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.
• 29:28
  Michael Mackniak: 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.
• 29:40
  Michael Mackniak: When is this actually a crisis?
• 29:42
  Michael Mackniak: When is it not a crisis?
• 29:43
  Michael Mackniak: 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.
• 29:54
  Michael Mackniak: Crisis got the call, crisis had to get in her car and go to the to the hospital.
• 30:01
  Michael Mackniak: She grabbed her car keys, ran out the door, speeding, got pulled over, had had two glasses of wine.
• 30:07
  Michael Mackniak: Cop was questioning her.
• 30:09
  Michael Mackniak: She didn't have her pocketbook because she ran out the door so fast.
• 30:12
  Michael Mackniak: And it's like, man, that just adds a whole layer of hurt onto that poor woman's day.
• 30:17
  Michael Mackniak: 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.
• 30:30
  Victoria Cuore: Yes, yes.
• 30:31
  Victoria Cuore: 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.
• 30:37
  Victoria Cuore: And when we go in somewhere, they immediately start talking and they don't even listen.
• 30:41
  Victoria Cuore: 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.
• 30:47
  Victoria Cuore: It doesn't mean that, you know, mentally that they're not there.
• 30:49
  Victoria Cuore: 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.
• 30:58
  Victoria Cuore: 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.
• 31:08
  Victoria Cuore: And most people live and they go to the same children's hospital or they go to the same regular hospital or whatever.
• 31:13
  Victoria Cuore: And this is going on.
• 31:14
  Victoria Cuore: You go up to them and they it all this is going on, they hand you a buttload of forms, right?
• 31:19
  Victoria Cuore: And you're like, right now, really, I can't do anything until I sign these.
• 31:22
  Victoria Cuore: Get them, wait about two minutes, go back and say, I messed them up.
• 31:25
  Victoria Cuore: Can I have another copy?
• 31:27
  Victoria Cuore: And you only do this the one time.
• 31:29
  Victoria Cuore: And I tell people this, and people realize they're like, that was the most genius thing I've ever heard.
• 31:34
  Victoria Cuore: Take the copy that you haven't written on, put it in your bag, fill out the other one, turn it in.
• 31:39
  Victoria Cuore: When you get home, make copies, make copies of it filled out and have them already filled out.
• 31:45
  Victoria Cuore: Just do not date them, do not sign and date it, just don't date it.
• 31:51
  Victoria Cuore: And if there is something going on, like you know, with your individual loved one or child, leave a space up top.
• 31:59
  Victoria Cuore: 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.
• 32:09
  Victoria Cuore: 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.
• 32:13
  Michael Mackniak: And you just what that's just like beautifully diabolical on your part.
• 32:17
  Michael Mackniak: I love it.
• 32:18
  Michael Mackniak: What a great idea.
• 32:19
  Michael Mackniak: 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?
• 32:33
  Michael Mackniak: They love a really good plan, a real good timeline of events.
• 32:41
  Michael Mackniak: And so that's that's beautiful.
• 32:44
  Michael Mackniak: That's a great uh little hack there.
• 32:46
  Victoria Cuore: Yeah, so I love doing and I tell people do it.
• 32:48
  Victoria Cuore: 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.
• 32:58
  Victoria Cuore: It's the same thing.
• 32:59
  Victoria Cuore: I think another thing, another avenue you and I need to talk about down the road is doing IEP.
• 33:04
  Victoria Cuore: 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.
• 33:12
  Victoria Cuore: 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.
• 33:22
  Michael Mackniak: 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.
• 33:33
  Michael Mackniak: And very often I see situations where are you kidding me?
• 33:38
  Michael Mackniak: This kid doesn't have an IEP.
• 33:40
  Michael Mackniak: Really?
• 33:40
  Michael Mackniak: Okay, if you say so, I mean we're moving on, but we that's a whole discussion for another day.
• 33:46
  Michael Mackniak: But yes, um that is all right.
• 33:48
  Michael Mackniak: So we've talked about a ton of stuff.
• 33:50
  Michael Mackniak: 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.
• 34:11
  Michael Mackniak: 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.
• 34:36
  Michael Mackniak: 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.
• 34:57
  Michael Mackniak: I'm just I want to know the why.
• 35:00
  Michael Mackniak: Why the why the heck are you doing this?
• 35:02
  Michael Mackniak: And and thank you so much for doing it with us.
• 35:05
  Michael Mackniak: But but what is it that touches you about it?
• 35:11
  Victoria Cuore: I love fighting for the underdog.
• 35:13
  Victoria Cuore: I love watching them succeed.
• 35:15
  Victoria Cuore: 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.
• 35:26
  Victoria Cuore: 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.
• 35:37
  Victoria Cuore: But to go in and, you know, these individuals feel like nobody's in their corner, nobody understands it.
• 35:45
  Victoria Cuore: 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.
• 35:56
  Victoria Cuore: And everybody needs somebody who's gonna say, I believe in you and I support you, and I'm here.
• 36:01
  Victoria Cuore: And they have to mean it, Mike.
• 36:03
  Victoria Cuore: They have to say, I mean it.
• 36:05
  Victoria Cuore: And the one thing we have, money is not relevant.
• 36:08
  Victoria Cuore: What you drive is not relevant, where you live is not relevant.
• 36:11
  Victoria Cuore: What is relevant is the one thing we always have, and that is our word.
• 36:15
  Victoria Cuore: And the one thing Mike will tell you is that I am a person of my word.
• 36:17
  Victoria Cuore: And when I say I'm gonna do something, I'm gonna do it.
• 36:19
  Victoria Cuore: And I do it a little to the extreme.
• 36:21
  Victoria Cuore: So yeah.
• 36:23
  Michael Mackniak: Yeah, you over, you over-deliver, that's for sure.
• 36:26
  Victoria Cuore: Well, and the thing is that I will go to the hospital at 9:30 at night and advocate if I'm asked to.
• 36:31
  Victoria Cuore: I will go at 6 a.m.
• 36:33
  Victoria Cuore: 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.
• 36:40
  Victoria Cuore: And, you know, the thing is that no matter how escalated you get, you can de-escalate the situation.
• 36:45
  Victoria Cuore: You just need someone to believe in them.
• 36:47
  Victoria Cuore: And when they're sitting there and they're having one of these episodes, like they feel like nobody's there.
• 36:53
  Victoria Cuore: I mean, I can't tell you how many times I laid on a floor and wished to die.
• 36:56
  Victoria Cuore: And it was because my whole, I was bleeding out of places that blood shouldn't come out of.
• 37:00
  Victoria Cuore: And I had this little kick remind me, hey, I'm here too.
• 37:04
  Michael Mackniak: And it was like little kick was the baby in your belly.
• 37:08
  Victoria Cuore: Yes.
• 37:08
  Victoria Cuore: And that's when all my abuse transpired.
• 37:10
  Victoria Cuore: And it was, how can I be this mom?
• 37:13
  Victoria Cuore: I can't be this mom.
• 37:14
  Victoria Cuore: I'm not this person.
• 37:15
  Victoria Cuore: And you know what?
• 37:16
  Victoria Cuore: You give that person as much power as you allot them to have.
• 37:20
  Victoria Cuore: And I realized that this piece of crap will never have that power again.
• 37:24
  Victoria Cuore: And that's how I went for it.
• 37:25
  Victoria Cuore: 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.
• 37:32
  Victoria Cuore: Whether they're acting out, it's because they feel like they need that attention.
• 37:36
  Victoria Cuore: It's genuine cry for help.
• 37:37
  Victoria Cuore: And most times people just want to brush it off as quickly as possible, sedate them, write a script.
• 37:43
  Victoria Cuore: Oh, you're on the spectrum.
• 37:44
  Victoria Cuore: Oh, let me give you this, let me give you that, and call it a day.
• 37:47
  Victoria Cuore: I want to get to the root of it.
• 37:48
  Victoria Cuore: I want to help you every step of the way.
• 37:50
  Victoria Cuore: 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.
• 37:57
  Victoria Cuore: And it's, I'm with you from here to forever.
• 37:59
  Victoria Cuore: And I'm still in contact with people I started 20 years ago with.
• 38:03
  Victoria Cuore: And for someone to know and remember things, like I'll reach out to someone and say, hey, it's your birthday.
• 38:08
  Victoria Cuore: How are you doing?
• 38:09
  Victoria Cuore: And they're like, how do you remember that?
• 38:10
  Victoria Cuore: And it was like, because you're touching my life.
• 38:13
  Victoria Cuore: And what is so ironic is the fact that I'm doing this because I know it's my calling.
• 38:18
  Victoria Cuore: 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.
• 38:24
  Victoria Cuore: And I don't want anyone to experience that.
• 38:26
  Victoria Cuore: So to have someone who will look you in the eyes and say, you are not alone and just say, I'm here.
• 38:31
  Victoria Cuore: What do you need from me?
• 38:33
  Victoria Cuore: 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?
• 38:45
  Victoria Cuore: No one is saying it.
• 38:46
  Victoria Cuore: Even in the hospital situation, they're not saying it.
• 38:49
  Victoria Cuore: It's sedate 'em, you know, restrain them, this, that, and the other.
• 38:53
  Victoria Cuore: And that's not helping.
• 38:54
  Victoria Cuore: That's not helping at the moment.
• 38:56
  Victoria Cuore: 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?
• 39:07
  Victoria Cuore: I ask permission because everybody else is hands-on without their consent, right?
• 39:12
  Victoria Cuore: I don't need your consent, I'm holding you down.
• 39:14
  Victoria Cuore: I don't need your consent, I'm restraining you.
• 39:16
  Victoria Cuore: So I'll say, Can I, can I just hold your hand for a minute?
• 39:19
  Victoria Cuore: And we can just sit here.
• 39:21
  Victoria Cuore: Just sit here.
• 39:22
  Victoria Cuore: It's so chaotic and crazy.
• 39:23
  Victoria Cuore: You know, let's just enjoy the silence for a minute.
• 39:26
  Victoria Cuore: 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.
• 39:34
  Victoria Cuore: 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.
• 39:42
  Victoria Cuore: And that is what makes such a huge difference.
• 39:45
  Michael Mackniak: 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.
• 39:54
  Michael Mackniak: I should I should say, everybody, that Victoria's memoir, Who Kicked First, is you know, one of these globally recognized books.
• 40:04
  Michael Mackniak: 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.
• 40:14
  Michael Mackniak: Between she and I, we've made a a pact that I shouldn't, should not, and will not read it.
• 40:21
  Michael Mackniak: 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.
• 40:33
  Michael Mackniak: And and as as time goes by, I learn more and more about her struggle.
• 40:38
  Michael Mackniak: But as you guys just learned, she was abused while pregnant with with her daughter.
• 40:45
  Michael Mackniak: 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.
• 40:57
  Michael Mackniak: And you guys should all by all means, she's not holding you to any kind of promise.
• 41:01
  Michael Mackniak: So she's she wants you to promise that you will read her book.
• 41:05
  Michael Mackniak: So go out and get it.
• 41:05
  Michael Mackniak: Who kicked first by Victoria Cuore.
• 41:08
  Michael Mackniak: 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.
• 41:24
  Michael Mackniak: Um what is it what what do you what do you see?
• 41:30
  Michael Mackniak: What do people feel?
• 41:33
  Michael Mackniak: What do you want them to feel is available to them by virtue of the Network and the Care Coalition and our work together?
• 41:44
  Victoria Cuore: Acceptance.
• 41:45
  Victoria Cuore: Acceptance.
• 41:47
  Victoria Cuore: I want them to come in and feel this is a place I belong.
• 41:50
  Victoria Cuore: 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.
• 42:04
  Victoria Cuore: And you know what?
• 42:04
  Victoria Cuore: Every dark cloud has a silver lining, and I promise you, I'm gonna show you your silver lining, and so is Mike.
• 42:09
  Victoria Cuore: 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.
• 42:26
  Victoria Cuore: I mean, you know, I know so often when people are sitting in a waiting room, they want to talk to other people.
• 42:32
  Victoria Cuore: You know, what are you in here?
• 42:33
  Victoria Cuore: You know, are you how's the doctor or how's this?
• 42:35
  Victoria Cuore: 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.
• 42:44
  Victoria Cuore: There's so many things that I have not even talked to Mike about of things that I want to do.
• 42:48
  Victoria Cuore: Like I have people say, I wish you would do, you know, like a motivational thing every morning for me.
• 42:54
  Victoria Cuore: I wish you would send us out something every morning just to remind me of how great we are.
• 42:57
  Victoria Cuore: And I guess I'm telling him now that's something that I want to do.
• 43:00
  Victoria Cuore: 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.
• 43:07
  Victoria Cuore: So on the days that you have a moment that isn't so great, you can go back and reflect on those.
• 43:12
  Victoria Cuore: 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.
• 43:21
  Victoria Cuore: 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?
• 43:34
  Victoria Cuore: What time of day was it?
• 43:35
  Victoria Cuore: What was he wearing?
• 43:36
  Victoria Cuore: And I'm watching my daughter fight for her life.
• 43:38
  Victoria Cuore: She was coding every single day.
• 43:40
  Victoria Cuore: She was having 20 seizures a day.
• 43:42
  Victoria Cuore: She was like blue.
• 43:43
  Victoria Cuore: They told me she wouldn't make it.
• 43:45
  Victoria Cuore: 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.
• 43:51
  Victoria Cuore: And she had it for two and a half years.
• 43:53
  Victoria Cuore: So I didn't get to hear her as a baby.
• 43:55
  Victoria Cuore: I didn't get to hear the crying and the all of those things.
• 43:58
  Victoria Cuore: But I don't regret anything because we shared milestones that most people would never have.
• 44:03
  Victoria Cuore: And we don't take one minute for granted.
• 44:05
  Victoria Cuore: And so to go back and look at that, the Who Kicked First is as raw as it can be, Mike.
• 44:11
  Victoria Cuore: And it is just, it is graphic and it is, it is like, and I put it out there.
• 44:15
  Victoria Cuore: And the first time I did a speaking engagement, I had someone say, Your book saved my life.
• 44:19
  Victoria Cuore: And I said, Who am I?
• 44:20
  Victoria Cuore: I am, I am such an ass because here I am wondering about judgment.
• 44:24
  Victoria Cuore: And this person just told me that your book saved my life.
• 44:27
  Victoria Cuore: And it was like, I feel like I'm a millimeter tall because of that.
• 44:32
  Victoria Cuore: And I've had people say, Well, are you going to revamp it?
• 44:34
  Victoria Cuore: Because it's so raw.
• 44:35
  Victoria Cuore: I mean, it's not in paragraph form, it's not in this form, it's not, it's in a journal form.
• 44:39
  Victoria Cuore: And I said, No, because I think if I did, it takes away the authenticity of the book.
• 44:44
  Michael Mackniak: It takes away the message is in the mess, right?
• 44:47
  Victoria Cuore: It is exactly.
• 44:48
  Victoria Cuore: And so the other books, they're they're in the correct form.
• 44:51
  Victoria Cuore: And you know, and important.
• 44:53
  Michael Mackniak: You spelled your own name right.
• 44:55
  Victoria Cuore: I did.
• 44:55
  Victoria Cuore: I did always spell my name right.
• 44:57
  Victoria Cuore: 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.
• 45:05
  Victoria Cuore: if that's the time we we do a Q&A or a live support group.
• 45:09
  Victoria Cuore: I can't do anything at this time.
• 45:11
  Victoria Cuore: This is where I'm gonna be.
• 45:11
  Victoria Cuore: I'll do it.
• 45:15
  Victoria Cuore: But you know, I want people to look forward to it.
• 45:19
  Victoria Cuore: And I tell people all the time, you know, it it just came out that I got this award.
• 45:25
  Victoria Cuore: 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.
• 45:33
  Victoria Cuore: And I laughed.
• 45:33
  Victoria Cuore: At first I thought I was being pranked.
• 45:35
  Victoria Cuore: I thought somebody's pranking me.
• 45:36
  Victoria Cuore: It's funny.
• 45:37
  Victoria Cuore: I thought my husband did actually.
• 45:38
  Victoria Cuore: And then I was like, how would that happen?
• 45:40
  Victoria Cuore: But it's not because of what I do.
• 45:42
  Victoria Cuore: It's because of who I get to help.
• 45:44
  Victoria Cuore: And those people see what I'm doing.
• 45:47
  Victoria Cuore: And I use those awards and everything else to help me get out there in front of more people.
• 45:53
  Victoria Cuore: Because unfortunately, so many people need us, but they don't know how to get to us.
• 45:58
  Victoria Cuore: They don't know how to come to us.
• 45:59
  Victoria Cuore: And that's what I want to change.
• 46:01
  Victoria Cuore: I want to make sure that people know that we're here.
• 46:03
  Victoria Cuore: And I tell people all the time if you email me, you get me.
• 46:07
  Victoria Cuore: You don't get anybody else.
• 46:08
  Victoria Cuore: You're going to get to me.
• 46:09
  Victoria Cuore: If you reach out when I'm doing, you know, support and therapy, you get me.
• 46:13
  Victoria Cuore: You're not going to get, I'm not handing you off to somebody, no matter what.
• 46:16
  Victoria Cuore: You know, I have people who will text me everything they do during the day.
• 46:21
  Victoria Cuore: I'm off the floor.
• 46:21
  Victoria Cuore: I did this.
• 46:22
  Victoria Cuore: I did that.
• 46:23
  Victoria Cuore: Thanks for listening.
• 46:24
  Victoria Cuore: And I write back, I'm so proud of you because you got up off the couch today.
• 46:27
  Victoria Cuore: Forget the chores.
• 46:28
  Victoria Cuore: Forget the chores.
• 46:30
  Victoria Cuore: At one time you locked yourself in the bedroom.
• 46:32
  Victoria Cuore: Now you're on the couch.
• 46:33
  Victoria Cuore: And some people might be like, so what?
• 46:36
  Victoria Cuore: You went from a locked door where nobody could get in to the living room on the couch.
• 46:42
  Victoria Cuore: That's huge.
• 46:43
  Victoria Cuore: That's huge.
• 46:44
  Michael Mackniak: Yeah, one time, one time Angela and I had a meeting.
• 46:48
  Michael Mackniak: You you met her today too.
• 46:50
  Michael Mackniak: 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.
• 46:55
  Michael Mackniak: And this gentleman came out and he sat down with us and he talked to us for like 10 minutes.
• 47:00
  Michael Mackniak: And after the 10 minutes, he just said, Thank you, I gotta go now.
• 47:02
  Michael Mackniak: He got up and and just walked away abruptly.
• 47:05
  Michael Mackniak: And I was like, Well, okay, well, that's that's that.
• 47:08
  Michael Mackniak: You know, this guy had severe persistent mental illnesses.
• 47:11
  Michael Mackniak: 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.
• 47:25
  Michael Mackniak: That guy sat down at a table with you and spoke to you for 10 minutes.
• 47:29
  Michael Mackniak: We can't even get him to come out of his room, like you're saying.
• 47:32
  Michael Mackniak: So, and that was my first intro to that, where it's uh baby steps, Bob.
• 47:37
  Michael Mackniak: You know, it just you don't know how how big these uh these mountains are that you have to move.
• 47:43
  Michael Mackniak: And if you if you get a little a little a little quake, it's it could be humongous.
• 47:47
  Michael Mackniak: But I'm going to uh do to you right now what you did to me yesterday or the day before.
• 47:53
  Michael Mackniak: I can't remember.
• 47:54
  Victoria Cuore: Oh no.
• 47:54
  Michael Mackniak: So payback's a bitch.
• 47:56
  Michael Mackniak: Uh if we then're one year ahead, Victoria.
• 48:00
  Michael Mackniak: We're right in the scene, one year ahead.
• 48:03
  Michael Mackniak: 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?
• 48:15
  Michael Mackniak: This week and next week are gonna be monsters for us.
• 48:19
  Michael Mackniak: And how many people do you want to reach in a year?
• 48:22
  Victoria Cuore: Do you think we're still working together in a year?
• 48:25
  Michael Mackniak: Yes, do you?
• 48:29
  Victoria Cuore: I I hope everybody looks at his face because he's like, What?
• 48:31
  Victoria Cuore: What are you talking about?
• 48:32
  Victoria Cuore: How many I want to reach in where I want to be?
• 48:35
  Victoria Cuore: I I actually love the idea of doing speaking engagements.
• 48:38
  Victoria Cuore: I have a few already on the books that I'm doing for the year.
• 48:41
  Victoria Cuore: 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.
• 48:57
  Victoria Cuore: 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.
• 49:09
  Victoria Cuore: 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.
• 49:30
  Victoria Cuore: And well, Faith doesn't, but you know, and and that's the end of it.
• 49:33
  Victoria Cuore: And they don't want to tell you what's going on.
• 49:34
  Victoria Cuore: 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.
• 49:48
  Victoria Cuore: And to have that opportunity and to author some additional books, I think would be amazing.
• 49:53
  Victoria Cuore: 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.
• 50:01
  Victoria Cuore: And I'm and you know, and the thing is is that over the years I've lost more and more parts.
• 50:06
  Victoria Cuore: 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.
• 50:12
  Victoria Cuore: Like, I have to take off my glasses.
• 50:13
  Victoria Cuore: 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.
• 50:19
  Victoria Cuore: I will still be here advocating.
• 50:22
  Victoria Cuore: I haven't given up ever.
• 50:24
  Victoria Cuore: I was told I had a 2% chance of survival, and I said, that's better than one.
• 50:27
  Victoria Cuore: And so as long as I have a voice, I'm gonna be talking to those that are voiceless until they become a whisper.
• 50:34
  Victoria Cuore: 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.
• 50:44
  Victoria Cuore: And it comes full circle.
• 50:45
  Victoria Cuore: I would love to be on stages with you.
• 50:47
  Victoria Cuore: I would love to go out and, you know, even do schools, go into mental health facilities and go in there as well.
• 50:55
  Victoria Cuore: Hopefully, write some curriculums for them as well and for caregivers.
• 50:59
  Victoria Cuore: I think courses need to be done for caregivers.
• 51:01
  Victoria Cuore: 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.
• 51:13
  Victoria Cuore: Because as an officer, you're required to do 20 years, 20 hours a year or year of in-service training.
• 51:19
  Victoria Cuore: And that's first aid CPR and you have to re-register your firearm.
• 51:23
  Victoria Cuore: 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.
• 51:30
  Victoria Cuore: How you handle these situations, de-escalate the situation, there's no reason to taser them, right?
• 51:35
  Victoria Cuore: There's so many things that I think that are in the cards and align for us.
• 51:40
  Victoria Cuore: I see well over a year.
• 51:42
  Victoria Cuore: I can tell you five years, I can tell you whatever.
• 51:45
  Victoria Cuore: But I'm hoping that we make it where a year from now we're celebrating one year of holding it together.
• 51:52
  Victoria Cuore: 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.
• 52:00
  Victoria Cuore: And I felt that connection to you when I first met you.
• 52:04
  Victoria Cuore: And I immediately started, and I was like, this has to work, this has to work.
• 52:07
  Victoria Cuore: 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.
• 52:16
  Michael Mackniak: And I thank you for that.
• 52:17
  Michael Mackniak: 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.
• 52:25
  Michael Mackniak: We we we need you, the world needs you, and we're just lucky to have you.
• 52:29
  Michael Mackniak: So, Victoria Cuore, thank you for being here on the Holding It Together podcast.
• 52:35
  Michael Mackniak: And I'm sure I'll be talking to you probably within the next half hour, hour, something like that.
• 52:41
  Victoria Cuore: Absolutely.
• 52:42
  Victoria Cuore: Thank you guys for having me.
• 52:43
  Victoria Cuore: I appreciate it.
• 52:49
  Michael Mackniak: I want 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.
• 52:58
  Michael Mackniak: If you're like me, your brain is probably filled with appointment dates, medication schedules, and a never-ending list of questions for doctors.
• 53:05
  Michael Mackniak: It's exhausting trying to keep it all in your head while also trying to show up emotionally for the person you love.
• 53:11
  Michael Mackniak: That's exactly why the team at the Care Coalition created the Care Navigator Journal.
• 53:18
  Michael Mackniak: This is not just another notebook.
• 53:20
  Michael Mackniak: 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.
• 53:32
  Michael Mackniak: It gives you a dedicated space to track medical updates, manage daily tasks, and even process your own thoughts.
• 53:39
  Michael Mackniak: Imagine such a thing.
• 53:41
  Michael Mackniak: Your well-being matters just as much as the person that you're caring for.
• 53:46
  Michael Mackniak: If you're feeling overwhelmed and looking for a way to stay organized, I highly recommend picking one up.
• 53:53
  Michael Mackniak: You can find it right now at www.carecoalition.org slash holding it together.
• 54:00
  Michael Mackniak: Again, that's carecoalition.org slash holding it together.
• 54:06
  Michael Mackniak: It's a small way to start holding it all together, one page at a time.
• 54:11
  Michael Mackniak: Alright, let's get back to the show.
• 54:13
  Michael Mackniak: Today was a big one, guys.
• 54:21
  Michael Mackniak: We've moved from talking about the problem to building solutions.
• 54:26
  Michael Mackniak: Victoria Cuore is gonna be a frequent face and voice as as we roll this all out.
• 54:31
  Michael Mackniak: We roll out This Is What It Takes and the Mental uh Health Resource Network.
• 54:37
  Michael Mackniak: Don't forget, your character isn't just an individual trait, it's a collective one.
• 54:42
  Michael Mackniak: 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.
• 54:53
  Michael Mackniak: We're building a bridge, and we want you to come across it with us.
• 54:58
  Michael Mackniak: We you you don't have to hold everything together alone anymore.
• 55:02
  Michael Mackniak: So join us on Facebook at the Mental Health Resource Network.
• 55:06
  Michael Mackniak: Be part of the Care Coalition platform, and until next time, just keep holding it together.
• 55:12
  Michael Mackniak: And know, know that now we're here to help you, and we're here to help you together.