“Our Son Died with His Civil Liberties Intact” - and What We Did Next (Ep. 48)

 Episode 48: “Our Son Died with His Civil Liberties Intact” - and What We Did Next 

One Story of Bedlam - and Activism - in America’s Mental Health Crisis

Guests: Norm Ornstein and Judy Harris

You are about to meet a couple - Norm Ornstein and Judy Harris - who tragically lost their son Matthew in 2015. Matthew had struggled with mental illness for over a decade, and , as listeners of this podcast well know - that means the entire family was affected. 

After Matthew’s death, Norm and Judy (along with their son Danny), created a foundation in his name, which you’ll learn about in the second half of the podcast. Another project of theirs is the PBS documentary film, The Definition of Insanity looks at one judge’s innovative efforts in Miami to prevent people with mental illness from being treated like criminals…narrated by Norm’s longtime friend Rob Reiner. 

First, we ask them about Matthews’ story, and, as you will hear, these highly successful activists still live with the feelings that all similar families face - guilt, confusion, anger, and grief. Hear their story…and how they are working to find ways of “taking a tragedy and trying to make something positive,”

Links:

The Matthew Harris Ornstein Memorial Foundation

https://www.mornstein.org/

The Definition of Insanity Documentary:

https://www.pbs.org/show/definition-insanity/

Book :Bedlam: An Intimate Journey Into America's Mental Health Crisis

https://www.amazon.com/Bedlam-Intimate-Journey-Americas-Mental/dp/0525541314/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=1656544912&sr=8-1

https://www.washingtonian.com/2020/04/30/the-deeply-personal-story-behind-the-pbs-documentary-the-definition-of-insanity/

Want us to cover a topic? comment to share?

Facebook page @Schizophrenia3Moms

@SZ3MomsTrenches -  twitter

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_03 0:00

You're about to meet a couple, Norm Ornstein and Judy Harris, who lost their son Matthew in 2015. Now their son had struggled with mental illness for over a decade, and as listeners of this podcast well know, that means the entire family was affected. After Matthew's death, Norm and Judy, with their son Danny, created a foundation in his name. You'll learn about that in the second half of the podcast. Another project of theirs is the PBS documentary film The Definition of Insanity, and that looks at one judge's innovative efforts in Miami to prevent people with mental illness from being treated like criminals. That documentary is narrated by Norm's longtime friend, Rob Reiner. But first, we ask them about their story. And as you'll hear, these highly successful activists still live with the feeling that all similar family space guilt, confusion, anger, grief, what could we have done differently? How could we have missed it? Hear their story and how they're working now to find ways of taking this tragedy and trying to make something positive. And they're doing a lot. Here's episode 48. Welcome to our podcast, Schizophrenia: Three Moms in the Trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye.

SPEAKER_02 1:27

So this is an episode where we will not be lacking for things to say with the people that we have here tonight.

SPEAKER_04 1:37

No awkward pauses.

SPEAKER_02 1:38

No awkward pauses. And I will say that if all it took was know-how to figure things out to fix the mental health system, these two guests would have done it. Judy went to Yale, she's a five Delta Capan, and she's a super lawyer, which is an honor, year after year after year in her office, which is on K Street in DC. And having a daughter there, I know that's not a slouch place to office. Norm, who's from Minnesota, graduated from high school at age 14, college at 18. He's a member of the Persuasion Advisory Board. We need that group more than ever now. And a resident scholar of the American Enterprise Institute, and it's a contributing editor for the Atlantic. So I think first, generally, we can go all over the map and we do, but we want to hear first your story, and then we want to hear about the Matthew Harris Hornstein Memorial Foundation. So first your story, and we you can slug it out as to who starts.

SPEAKER_00 2:48

Okay, Judy will start. Judy will start. Wow. Um I will start. Well done, Norm. Well done. Very unusual, I must add. The so our story goes that we had a son, his name was Matthew. He was, I'm sure every mother feels this way, but he was a perfect child. I'm really hard-pressed to think of a single time that we ever even disciplined him, or maybe that was part of the problem. But he was um a national champion debater in high school. Um graduated from Princeton. He was out in Hollywood, he had his own television show with um his high school debate partner. It was a brilliantly funny show. He did a lot of stand-up um comedy. The show's title um was called Master Debaters, don't think about it too long. Um, and it was hilarious. Um, they would they acted in it, they wrote it, um, and they produced it. It was using um uh champion college debaters um debating extremely funny topics. He did that for several years in Hollywood. And what year what year are we talking about? We're talking about he graduated from Princeton in 2002.

SPEAKER_03 4:27

Okay.

SPEAKER_00 4:28

Um, so it would have been the couple years after that.

SPEAKER_03 4:31

And so episodes of this are they available for people to see if we want to get to know Matthew?

SPEAKER_00 4:36

Or oh my goodness, I don't know that you want to know him through this. Um, yeah, I that's a good question. I don't know why we didn't put him up on our website. We should. We'll get back to you on that. Okay. Um, and we haven't watched them in a very long time, but he was doing great, and then several things he he had worked in Rwanda, he had studied in South Africa his junior year in college. We really truly never had any cause for concern. Um, and then a couple and just so I get the background, uh, is he an only child? Do you have other no? He has a younger brother. Um, and uh the younger brother, I would actually say I was always a little bit more worried about. He was very anxious kid. He uh um he's gay and he um had to come out at a very young age. Uh it wasn't his choice, it was episode at school. Um, but and his big brother was the world to him. Um and the golden boy of the family, it sounds like so what both fantastic. They were they were both, you know, we never Matthew would never let us see his college application. We never took him to look at colleges. Danny, you know, applied to Harvard and Yale early action, got into both, and then decided. I mean, Harvard and Brown decided to go to Yale. So they were both golden boys, they truly were.

SPEAKER_03 6:03

Okay.

SPEAKER_00 6:04

Um, and a couple of things happened out in California. One thing is their show was sold to a bigger um, they it was originally a niche show on the National Lampoon cartoon lampoon channel, right? Yes, and it got sold to a bigger um outlet and it didn't, they they didn't screen it for a while. You know, the the new owners of the show sat on it for a while, so he didn't have a lot of uh structure at that period of time. Um, but but also one day out of the blue, he got a phone call from a young woman that he had been in love with um from the time he was five years old. I mean, or what, seven years old. We always we never really took it all that seriously, but he they were best friends. He followed her to Princeton. Uh, and she called one day and uh told him that she was engaged to one of their classmates, and he just had a terrible spiral at that point. He never had told her how he felt, and he started to uh spiral downward, he started to write to her desperately, telling her, you know, how much he needed her, etc. You wanna um step in? So anyway, um get to the story of what happened. So we had a very long journey, and we did not know there was a problem until uh 2000, spring of 2005. Um it was our son Danny's graduation from college, and um we met um Matthew at O'Hare Airport. He was flying in from LA in order to drive. Um, well, first we're going to his cousin's um first cousin's graduation from Madison, and then we were gonna drive to go to Danny's graduation. Um we picked him up at about 10 o'clock at night. He got into the car. I took one look at him, and I turned to Norman and I said, Matthew's not there. He has schizophrenia. I don't know what made me think that, and we never have had a diagnosis for Matthew. I don't know what was wrong, but it um am I boring?

SPEAKER_03 8:31

But you just Norm, can you chime in here? So everything was perfect. Everything was perfect except for this disappointment, a couple of disappointments, one in love and one in career. But then he flew home. You had no clue, there were no breakdowns that you knew of, but he got in the car and you went, he has schizophrenia just like that. Is that how you remember it? I did. Norm, I think thought it was. What did you see? What did you see?

SPEAKER_04 8:56

Well, we knew after we talked to uh his roommates in LA, and soon after that, he came home uh and left LA that he'd had a psychotic break and uh something had happened one night. He thought God had come and taken his soul. He wasn't sure why. He uh and had not taken his body, which he thought was probably a mistake on God's part, but he basically um believed that he had to go on a journey to recover his soul. You know, uh so many people, we don't know what uh serious mental illness he had. Um, as Judy said, it was never formally diagnosed, and you know that uh the uh continuum here is a tricky one. The symptoms for many of these illnesses are the same, uh, or they overlap tremendously. But the religious ideation is uh such a common part of this.

SPEAKER_02 9:56

Were there any drugs involved?

SPEAKER_00 9:58

All of our three wait, and Norm's getting a little ahead in the story, but I will say we found out uh when Matthew got into that car that night at about 10 at night, he wasn't there. He he was vacant, he couldn't communicate. Later, we later called back to his roommate and said, you know, what happened, etc. But um we found out afterwards that he had been smoking a lot of marijuana when the show, and it wasn't a setback in his career, it was like a promotion. He was going to be on a bigger network with more funds, but they weren't um, they hadn't started filming yet, and so it was this period of time, a big disappointment, a broken heart, no um will to live. And and um we found out later that he had been smoking a lot of marijuana at that point. Um, and you know, we know I've I've never in all the years since, and that was in 2005, I've devoted my life to this ever since. I've never been able to sort out the chicken and the egg. I don't know.

SPEAKER_01 11:10

And we're and we're not basically what I have to say. None of us can.

SPEAKER_03 11:14

None of us can. And we're not here to diagnose your son, we're not here to figure out what happened. What we'd love to hear from you is your family experience, and we do want to have the time to get to what you did with your pain. And we know from the title of this episode that your son is no longer with us because the there is a book called Bedlam, and your chapter is entitled, Our Son Died with His Civil Liberties Intact. So, just to speed up the story a bit so we can get to the wonderful memorial foundation that you've set up, he came home, something wasn't right. Uh, psychosis, schizophrenia, whatever you want to call it, you knew your son was in trouble. So, after that, what happened between that and when he lost his life that encouraged you to spend the many years after that doing what you do?

SPEAKER_00 12:12

We went on a search, Randy, for uh health. And in those days, you know, um we had an impossible time, and we still people have an impossible time finding a doctor who was willing to help, um, who had the expertise to help. Like so many parents in the beginning. We I'm embarrassed to say that we believed this was, you know, he was gonna be fine. We wanted to protect his wonderful reputation. We wanted to, so we searched for a private physician. Um, we had massive disappointments in that regard. Nobody, I think psychiatrist after psychiatrist that committed malpractice, and that we, the very first doctor we found, um Matthew at that point was willing to see a doctor. Later on, he was not, but in those early days, he's willing to go mostly to the infuriates me so much.

SPEAKER_02 13:16

Right when at the beginning, when they would go, is when the psychiatrists don't leap in. So I love your word malpractice, Judy. And the fact that you're a super lawyer, that means something.

SPEAKER_04 13:27

Let me just interject here, though. Matthew was willing to see a doctor, not because he believed he was ill and needed treatment. It was a bargain with us. He had anasygnosia. He did not think he was ill. He didn't think there was such a thing as mental illness. And his willingness to go to a doctor was based on a uh uh what he thought was a contract. As long as he just went and talked to somebody once or twice a week, we would feel better about it. It wouldn't do anything for him. He was happy to talk to people at that point, although he was also very depressed. But if anybody raised the issue uh or idea of taking medications, he was out of there instantly. So, you know, we shouldn't uh have the belief that early on it was, oh my god, I'm ill, help me with this. That was never there with him. That was never there.

SPEAKER_00 14:23

I disagree a little bit in the beginning. He the the anosignosha and all of that didn't set in till, but we had a 10-year journey and it had every imaginable twist and turn. When we got back from the graduation, he was willing to go. He was concerned, he knew he was depressed, he wasn't particular. The issue of medicine never came up at that point. The doctor that we found, that I found, we I went and interviewed this doctor um before I it was very hard. It was Memorial Day week and hard to find a doctor. But I interviewed this doctor, I was convinced he'd be a good fit because he was very much like Matthew's grandfather, with which with whom he was very close. And um Matthew agreed to go to him and he went to him on his own for about six weeks. And then the doctor said he'd like to do a family conference, family visit. We all went in. He looked up, he said, Well, Matthew, I think, um, has bipolar. I'm not really sure, but I take off three months in the summer. So this is the last time we'll be able to meet um for three months. And here's a prescription, which he handed Matthew for a 90-day supply of a drug. He didn't make a referral to another doctor that we could call. He didn't um uh, you know, he did not, when I went in and had a visit on my own, he did not in any way prepare me for the fact that he would be taking the next three months off.

SPEAKER_03 15:59

Um and so, Cutie, I I I'm going to just uh I know this story, I know your story, we feel your story. It happens to all of us. Uh, we all we're actually a third into the podcast already. And so I I know how easy, we all know how easy it is to get stuck in the early stages and what we tried to do and how we tried to normalize. So I know you had a 10-year journey, and I imagine that even though you guys are seeing it slightly differently, which is quite common with couples, correct, uh, that there was a 10-year journey where you knew something was wrong. Matthew probably did not accept it. But when you get to the title of the chapter in Bedlam, which is a study, a book with many chapters about the broken American mental health system, correct. What is the part of your story that uh brought you to the title? Our son died with his civil liberties intact. Bring us to there and do the rest in a nutshell so that we know how your son died, what could have been done differently, and then the work you're doing now.

SPEAKER_00 17:12

We were never able to get him any help. We I searched for doctors, we went from one doctor to another doctor. At one point, we had a wonderful doctor that came to our home at 10 at night twice a week. He worked at NIMH. Um, and he was just to fast forward, he he was uh murdered by somebody else's patient that he and a special consult. That was the end of Matthew being willing ever to talk to anybody. He had started to bond with this doctor, it was the first time that any doctor had met him where he was, had taken the time to try and build a relationship with him. After that, um I often say when I speak uh that the worst day of my life was not my son's funeral. It was the day that I went to court and testified against him. And I we were living in Maryland. Maryland has been ranked by the Treatment Advocacy Center as being 50th out of the 50 states in the union for barriers to court-order treatment. And the doctor that Matthew and Norm was out of the country, we had an episode, it wasn't violent in any way, but um I got a call. I went to Matthew, I called a doctor I was seeing, who advised me to, you know, call the police. He wasn't doing anything really wrong, but he was clearly in the middle of a psychotic episode. And so I did that believing that it was the only possible way of getting him any help. Okay, and did it work? And it did not work. Um then what happened? Disastrous. Um, there it there was a you know a long series of ins and outs, but ultimately it is impossible in the state of Maryland to get help for anybody uh involuntarily.

SPEAKER_02 19:24

Has that law gotten any better since then in Maryland?

SPEAKER_00 19:27

Not only has it not gotten any better, but the state of Maryland, we just came back from um uh I do a lot of work now on a task force, a judicial task force. We just came back from a regional meeting of the judges um for the Mid-Atlantic region. Maryland was the only state that didn't even send a delegation. So it no better, no progress, nothing.

SPEAKER_04 19:47

Do you know it's as as you know all too well, if you have somebody over 18 and they refuse to get any treatment, um, you come up against barrier after barrier after barrier. It's worse in Maryland, it's not great uh in most places. I will say, you know, at the beginning, we were completely naive about all of this. And we thought if we could get him medications, that would, you know, basically move him away from these uh beliefs that God had taken his soul and that uh he was off on a terrible path. Um, you know, not even realizing that uh for some people the medications may work dramatically well, but they're far from perfect anyhow. Um, and of course, we couldn't get him on medication. We uh tried everything over the time that we uh dealt with this over 10 years, and our pain was exceeded dramatically by his own. Matthew grew his hair long, he had a beard, he faced the stigma that uh so many people with uh serious uh brain disease have. Uh, and then he smoked heavily, as so many others do. We know that uh there's something in the nicotine that eases some of those terrible things in their brains, and that's an added uh layer of stigma. You know, he lived uh in a little condominium that we had down in Florida for a while, and they basically booted him out. Uh, he was in uh motels for a while. We had him in a place in Delaware, and that didn't work because of the smoking as much as anything.

SPEAKER_03 21:24

Uh so Norman Judy, I'm gonna interrupt you for a second. Your story is our stories. Yeah, your story is every story as a family-to-family trainer that I've heard. And I feel for you, I totally feel for you. And except for the fact that our sons are still alive, which is a huge accept. We get that.

SPEAKER_00 21:44

It's a huge congratulate all of you on on so far.

SPEAKER_02 21:47

And the reason the reason my son is still alive is because I live in Minnesota, not Maryland. Right.

SPEAKER_03 21:53

Um and there are other states, you know, I live in Connecticut, which is pretty close to 50, but not quite. So What I would like to do, because our show needs to benefit everybody across the country. And we certainly have done episodes where we highlight the faults in the system and we highlight how difficult it is. And we have done episodes on the success of court ordered treatment. And so all of that is available for you to hear, for other people to hear. What we'd really like to hear from you is a little bit about Matthew's death, just so we have the picture. And I'm sure, you know, obviously the grief, you're still feeling it. But I'd love to have the time to get to the work you're doing now and make people aware of the work you're doing now. And if there's a way to help people who are in any of the 50 states who are who are trying to do what you tried to do to save your son, I have no doubt that you tried everything under the sun to save your child. We 100% get that. And I know how hard it is to tell the story. I'm going to ask you to focus it to how he died and what you're doing now.

SPEAKER_04 23:03

So, Matthew, for the last year of his life, was in a motel in Newark, Delaware, a college town where he had a smoking room. And he actually felt better about that. I asked him at one point, he didn't communicate very much with us, whether we could just find him a house to live in where he wouldn't have to worry about condominiums or apartments or whatever. And he said, Where I am here, nobody watches me. I can come and go as I please, and nobody complains about the smoking. He used to get a put up a tent in his room because it reminded him of the times in South Africa when he and his roommate would go out and camp out, and he felt serene in that. He went in one night with a pillow, a blanket, a book, his glasses on, uh, and a propane lantern for light, fell asleep, and uh it was carbon monoxide poisoning. We know when we ended up getting into the room that he had done this many times before. There were 10 empty canisters there. So we are pretty sure it was an accident. And of course, we were absolutely devastated, and we had to decide what we were going to do in the aftermath. And it was either curl up uh into a ball uh or it was try to find purpose in your grief. So uh we created a foundation that was Judy's idea right after uh he died, and we devoted ourselves to two things. One, because he was uh so uh into debate, and he was a national champion debater in high school. We created a summer debate camp, one that actually starts in a week or so for public school kids from Title I schools in the Washington area, and we have 200 kids now, just about from sixth grade through high school, and it's absolutely wonderful. And the other was to learn more about mental health and work in that area. And really, there are three things that we're doing. Um, one, we uh you know to fast forward, we encountered and then developed a relationship with this remarkable judge in Miami-Dade County, Florida, named Steve Leifman, who's completely transformed the way the criminal justice system deals with people with serious mental illness. Matthews' encounters with the criminal justice system were pretty minor, but so many people who have these terrible diseases have it much worse. And we ended up doing a documentary called The Definition of Insanity, which aired on public broadcasting in uh a couple of years ago, premiered at the Miami Film Festival, and you can find it at DOI for definition of insanity, doifilm.com. And we are taking that around the country. We did it virtually. Uh as Mindy knows, we're bringing it to Minnesota in August, and she is going to help us with that. We're going to do uh a number of things to try and spread the best practices that uh Judge Leitman has done absolutely miraculously. If you watch the Ken Burns documentary, the four hours that were on public television earlier this week, five of the people from his program, including peer specialists and others, were actually featured in it. Um, we have worked with Javier Amador, and I know you did a segment on I'm not sick, uh, I don't need help. It's just out in an audio book now. And we have been uh sponsoring with uh Amador and his Henry Amador Center trainings of people so that they can communicate better with those who have anasygnosia. And then Judy has been, as she mentioned, a part of this uh task force trying to change the standard. You want to talk about that?

SPEAKER_03 26:41

Yeah, tell us tell us about that.

SPEAKER_00 26:42

That's um well, I mean, I we really um the purpose of the debate camp was not only to create wonderful opportunities for these kids and carry on the work that we know Matthew would have done if he had been able, but it was also it's been to send people the message that this can happen to anybody. We had this super um, you know, super accomplished. Uh, we had all the financial resources we could have used. So that's an important message that we work into our camp. We do a lot of mental health training with the kids. Um we actually lost um the first winner of the Matthew Wernstein Prize to a mental illness. So it the two things do come together. I'm doing a lot of work as a lawyer, um, trying to come up with a model code. Um, there's uh two task forces going on. I'm on both of them where we're trying to come up with a national code. The the one of the task forces is virtually all judges um with psychiatrists who, you know, and we meet constantly. We have a draft document that's almost done. The notion is that if we can have a uniform code across the country that brings up to date um the law with the um science. And Mindy said something uh in the beginning um about um the importance of early intervention and our laws, as we know, um make you wait until, you know, in most states, in order to get any kind of help, if your child has an osognostia, um, you have to wait until that child is so sick that the chances of uh successful uh intervention, especially with the paucity of services, especially with the short period of time that anybody is being held. Um so, and all the judges all across the country are totally engaged in this because they see these folks come in through their courtroom every day and they don't have the power to help them, and they're sick and tired of that. And so the code has provisions that allow you to get earlier intervention in a situation where um the person really does not, where psychiatrists testify that the person does not have the ability to understand that they're ill, that it's a matter of um a physical, they can now do brain scans to show the exact part of the frontal lobe that's damaged when you have an osognosia. And there's great buy-in to this. We spend a lot of time trying to bring together the civil liberties community. Our son had a civil liberties lawyer. I was on the ACLU board, uh, the local board. Um, and that was uh getting back to the title of the book, um, you know, that that was the idea that you know, you'd you'd get an attorney, the attorney would say, What do you want me to do? And our son and thousands of others would say, I want you to get me out of here.

SPEAKER_03 30:06

Um so can you clarify something for me? Because my only connection to law is my son-in-law is a lawyer. So uh a code is something that is not a law, but it's something that judges follow. No, no, and code is law. I I'm using it this way.

SPEAKER_00 30:24

You're trying to get it uh on the federal level. Well, we're doing it on the state level because we have to right now. The dream, you know, the whole big dream, and this is what I work very closely with this Judge Leifman on, is to um have a federal code. There are many, many, they're called model codes and states um in in many areas of the law, the uniform commercial code that that um governs commercial transactions.

SPEAKER_03 30:57

So if there's a uniform code, does that have the hope of being a federal sort of code? If it's a uniform or is it uniform throughout the code?

SPEAKER_00 31:06

When it's a uniform code, the states decide whether to adopt it one by one by one. I see. Okay. The dream is though to have it adopted on the federal level at to get uh it's called preemption, have the federal level um adopt this and say to the states if you allow, if you agree to abide by the federal law, which needs to be created, um, if you abide by the federal law, we will give you in exchange the funds to implement the services you need.

SPEAKER_03 31:41

Okay, so it's the way a lot of the things work in this country. Um, Mimi, you've been really, really quiet. And I just want to see if you have any questions. So now we have a sense of your son. We have a sense of how hard you tried and how difficult it was, and a sense of the amazing things you're doing after his tragic death. Um, Mimi, do you have any questions?

SPEAKER_01 32:02

I just have to say I'm very impressed with with the things that you're doing to talk about um affecting change. It's really great. I'm wondering, I'm wondering about your other son a little bit. How is he?

SPEAKER_00 32:18

It's difficult. It's very difficult. He um had launched, they had a dream they were going to be the Ornstein Brothers um production company. They both were in Hollywood. Um, our younger son prepared himself to uh work on the business end, and Matthew was the creative end, and they had a whole thing. And Danny was okay for a while after um we lost our son. He was our rock, he planned everything. He flew in, he had just been with us the day before. We had to call him to come back. He planned the whole funeral. He uh he was a rock. Uh he was working at the time uh at Warner Brothers in a very high uh executive position. Um, but after a few months, he just and Warner Brothers was fabulous to him. I must plug Warner Brothers. Um, and but after a few months, he really wanted to be um, he he just didn't want to have to go into a workplace every day. He wanted to be able to have therapy, he wanted to be there for us, he wanted to, so he left and he um had he had been at the Federal Communications Commission, he had a notion for a startup, and he started with that. Um, unfortunately, when COVID hit, it got very difficult to raise funds, etc. So at the moment, he's trying to regroup. Um, we recently had a a very tragic death that really affected him deeply, of a very, very dear friend. And um, so he struggles. And sometimes I find myself referring to him as my collateral damage. He'll never be the same. He has hanging on his wall the letter that his brother wrote him when he graduated from uh uh high school, and it's just this huge poster of advice and this and that. And then the last line is, but you don't have to read any of this because I'll always be there for you. Um you'll always be able to turn to me for help. So it's been hard.

SPEAKER_04 34:38

Um, one of the things that we've learned, we learned the hard way is sibling grief is treated differently by people than parental grief. And uh we went to some meetings of compassionate friends, which is families who've lost children, and they sometimes will have siblings who meet, and the stories are all the same. People come up to the sibling, and it's much worse if you're the only sibling, and say, We're sorry about your loss, how are your parents, or you're all they have now. Uh after a while, they they basically say, Well, that's over with and move on.

SPEAKER_01 35:14

So, you know, in the in the um in the structure of the family, when one person gets mental illness, like we've all dealt with, it's a very um the the siblings become marginalized within the dynamic of mental illness as well. And it's something that I talk about a lot when I give talks about paying attention to and um and helping along and not looking past these siblings. And that's why I was wondering about this. It's interesting to hear that that's something that happens with bereavement in general.

SPEAKER_00 35:49

Yeah, it and when I remember attending this panel at the Compassionate Friends, which is a layled organization for people who've lost kids, and uh and the siblings, no matter how old they were or how many years ago their loss was, they all they were talking about things like they'll go into their parents' house, and the first thing they do is count the pictures. Are there more pictures of your dead child than of me? That kind of thing. But I will say that our Danny carries um an extra and a huge burden. There, there were my mother was a Holocaust survivor. There she had two children. My sister, who's a brilliant physician, never married and didn't have any children. Um, and uh and so Danny's it's gay, as I said, and so not have a partner right now. So the pressure he feels because the family stops, you know, and that's another huge burden for him.

SPEAKER_03 36:51

Right. So we have about five minutes left, and I want our listeners to know what the resources are for them and anything you'd like them to know about they can how they can help join your fight. Some of our listeners have also lost children and have found solace and advocacy. You know, tell us again, and I'll put them in the show notes, but sometimes people are listening in the car and they want to hear it. So tell us about the dot the uh DOI film. Tell us about the uh the Memorial Foundation and what people can do and how they can get in touch, and just final tips that you have for the family. So think about that for a second. I just want to mention because I am in the middle of watching the Ken Burns documentary, and right now I'm a little angry because I have not seen one person with anasygnosia on it yet.

SPEAKER_00 37:51

Maybe part two will be different. What? I also was very troubled by the fact that the first beginning of it when they were introducing people, everybody was from a dysfunctional or a broken home.

SPEAKER_02 38:06

I noticed that too and greatly resented it. I really resented that. My son noticed it and commented on it as well, that he has a good family and he's still got schizophrenia.

SPEAKER_03 38:18

I really, so I'm gonna write to Ken Burns. I'm gonna want to put two to be fair. And we're gonna have Pete early on next month. And I know Pete was part of it.

SPEAKER_02 38:26

So but right now, Doctor in Salon, because he was uh in the program, and I read his book, and he started out very strong on anasygnosia on people that didn't know they need care, uh assisted outpatient treatment. And the second half of his book I thought took another turn and more like this program of Ken Burns. Right. Well, we'll figure that out.

SPEAKER_00 38:51

There was kind of an arc to the story. And so there were a lot of artifices in the beginning to set up the arc when um turns out.

SPEAKER_03 39:01

I'll withhold judgment until I watch the rest of it. But right now I'm like, I don't see my son in any of these people until they started talking about psychosis. So I applaud the effort.

SPEAKER_04 39:10

Uh that that they do not deal adequately uh with uh anasygnosia. This is mostly about people, not all of them. There are some of them, like uh Jason Volpe, who's uh part of our film, Justin Volpe, who's part of our film, who for a long time uh did not recognize his illness, although he did uh uh subsequently. We can do a whole nother show on the film.

SPEAKER_03 39:35

So let's go back to the to the final question that I asked you. Yeah, tell us about the resources, how people can help, and what you would recommend to families right now.

SPEAKER_04 39:44

I I will say one thing that since we've gone public in a fairly major way, we get contacted all the time by people. The first thing they say is, I've never told anybody this. So one of the things that we all need to do, and your show, uh, your podcast is such an important part of this, is to give people the freedom to be able to talk about their own uh sets of issues and about mental illness in their family and about uh the challenges that they face. You can contact our foundation. We have a website, it's M Ornstein, M-O-R-N-S-T-E-I-N.org. It will give you not only more about Matthew's story, but about a lot of the things that we're doing and with a lot of links there uh as well. Um, I will say, uh, you know, there's a book coming out very soon by Ken Duckworth, uh, the medical director of NAMI for a long time, uh, in which we uh participated as many, many other families did, that I think is going to be an enormous resource for people that uh not only goes through a bunch of stories, but really gives guidance and places to go. Well uh educated people, we get contacted all the time, they have no clue. We didn't know about NAMI when we were going through our struggle. So there's a lot of that. You can find it on the website.

SPEAKER_03 40:59

NAMI is National Alliance on Mental Illness, in case you know, this is all in the show notes, and I will record an introduction that explains what anasygnosia is, in case somebody's listening and doesn't know. But it is the obviously the you're not aware that you're ill, which is common in stroke victims as well as people with serious mental illness. So that and then the definition of insanity film.

SPEAKER_04 41:21

So the the film, as I said, is a doifilm.com. Uh, you can watch it. Um, and if you have an interest in using it, we are more than uh willing to let you use it to try and make it a catalyst to bring stakeholders together in your own communities. And what's I think really important now is there's a perfect storm of the desire and need for criminal justice reform, for police reform, and for reform of the mental health system. And uh it's an impetus to try and bring those stakeholders together to change the way these policies work. And the incentive in part is you can save lives and save money at the same time. So uh, and if anybody wants to participate in some of the programs that we're doing, they will all be available. We're we're taking this around the country. We did it a lot virtually. We're doing it more now uh in person. We have a virtual national discussion coming up, uh, sponsored by Kaiser uh Permanente and the Kaiser Foundation. Then we're going to be going to Seattle, Portland, and Sacramento with them. We're doing this program in Minneapolis. Any communities that want to, we're happy to try and help you use the film for that purpose. And we are doing these training.

SPEAKER_01 42:37

Can I just say, can I interrupt for one second? Do let me let us know when you're in the Pacific Northwest, because that's my stomping ground.

SPEAKER_04 42:44

Sure.

SPEAKER_01 42:44

And I'd like to um do those in the fall.

SPEAKER_00 42:47

Definitely be on our list. I mean, I think uh the movie is a wonderfully hopeful movie. We did it as a template. This judge spent 22 years developing. He's you've got to have him on your show. He's amazing. Um, but he he got the award a few years ago for being the best judge in the country, but from the U.S. Supreme Court. But he That's Judge Leifeman. Yes. Judge Leifeman, okay. Template for other communities who want to be able to not have to spend the 22 years um getting to where he's getting. And he's been extremely generous with his time. He goes, travels with us, even though he's sitting uh in the court full time. So that is, and he is one last plug. Um we're about to start a second movie because he is doing the first of its kind um treatment facility. There's nothing like it in the nation. It had it's one stop shopping, it has everything that you would ever want. It has a podiatrist, it has a dentist, it has um uh, you know, a medical doctor to treat.

SPEAKER_02 44:00

Everybody else leaves out the dentist.

SPEAKER_00 44:02

Of course. And anyway, I could speak all night just on this, but I urge your viewers to watch this show. Um, it they'll be just transformed. And, you know, what I would ask of people, you know, NAMI needs to have brochures and hospital waiting rooms. They need to, is it possible that Norman? I, with his PhD and my degree and all this stuff, had never heard of NAMI until after our son died, living right here in the nation's capital. You know, you we need to share what we know with each other because the doctors, etc., well-intentioned, though they are, they're just not where the answers are coming from. It's up to us to share it. Never ever leave your child uh to be alone. I mean, keep your eye on that child.

SPEAKER_03 44:58

And if we can, we don't want to cause guilt from the parents who couldn't. Because you can't be there every second.

SPEAKER_00 45:06

I don't mean that. I don't mean that. I mean, you know, try to find your best, try your best to stay in touch.

SPEAKER_04 45:13

One last thing, which is uh we get contacted all the time by people saying, Do you know anybody a doctor we can see? I had somebody just a little while ago, I talked to Mindy with a brother who needed to find somebody in Minnesota. And we had somebody who needed uh a doctor who could deal with somebody with schizophrenia in the Washington area. We contacted everybody we knew, there was nobody available. We need NAMI, among other things. I mean, not only do we need more of them, we need NAMI to set up a listing in communities of uh medical professionals who are available when somebody hits a crisis. Because people have these things happen and they're clueless about it, and there's no resource to help.

SPEAKER_00 45:52

I will just mention, in case anybody is interested in any of this, I'm also working on training for the faith community because so many people with an asyngnosia and with religious ideation turn to their religious uh faith leaders. And those folks are often, you know, they're well-intentioned, they usually don't have the knowledge to know what they're dealing with. The other thing is what Norm mentioned, um, but we're doing it on another level of trying to get a subspecialty under psychiatry for people who are licensed to treat folks with serious mental illness.

SPEAKER_03 46:29

Okay, that's a big agenda. And you can find out more about that at mhornstein.org.org or doifilm.com. Uh, Norm and Judy, your story is in the book Bedlam. And uh they can start there. And thank you so much for honoring your sons by sharing both of their stories tonight and for all that you're doing.

SPEAKER_00 46:58

Thank you. It was a privilege, and as you can tell, we got a lot to say.

SPEAKER_02 47:02

So I will just say for my closing comment, I'm really glad the two of you did not curl up into a ball. Thank you for all you're doing.

unknown 47:12

Thank you.

SPEAKER_04 47:12

Same for all three of you.

SPEAKER_03 47:15

Thank you. And if we can help in any way, let us know. Sure will. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.