Listeners in the Spotlight: Tell Us Your Story! (Ep. 58)

Seven listeners share their stories of SMI (Serious Mental Illness) in a loved one - and, in one case, in themselves.

This episode grew out of a facebook post. We had so many volunteers to share their powerful stories that we may do more episodes like this, if you find it valuable and moving. I know we did.

Show notes:
Judith Smith's Support group info:
 judithrsmith@difficultmothering.com

Look Again podcast:
https://podcasts.apple.com/us/podcast/look-again-mental-illness-re-examined/id1557736942

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Linda's "manual":
I’d like to share some of my manual that I’ve created along the way:

·       Learn how to distinguish healthy language, judgement and behaviors from unhealthy or unsafe ones

·       Listen between the lines-try to understand what’s really being communicated-even when it seems so illogical

·       Clarify what is acceptable and what isn’t, for you, in your life.

·       Create a ‘board of directors’ for yourself…who will you turn to for various aspects of managing your loved one’s condition.

I now engage only with the healthy parts in conversation especially if it starts to escalate. Ignore the unhealthy.

I provide what I can to keep my family member safe, fed, housed, etc.-- When I’m too burned out, I allow myself to say, sorry I’m not able to do that now. I can do it later, tomorrow, etc.

I’ve reclaimed my home and decide when I can interact with him and when I cannot. Keep limits clear, factual rather than punitive, and make logical sense, rather than a knee jerk reaction to  frustration.

FInd ways to connect and love in the face of adversity, unfounded anger and blame

Hosts:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_08 0:00

He tried to like burn the house down. He did really like a crazy thing that he wound up calling the police and saying that two people were dead inside and that he he admitted that he did it.

SPEAKER_00 0:12

This is just one of several family stories that you'll hear tonight as the three moms in the trenches put our listeners in the spotlight and give them a chance to talk and to listen. Welcome. 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 Feltman, Mindy Gryling, and Randy Kaye. This is episode 58. We are so excited to be here. If you're watching on YouTube, you see a lot of faces, not just ours. This is Listeners in the Spotlight, tell us your story. And this kind of grew out of a comment I heard from a listener who loves us, but there was one episode we did where a family was telling their story and they didn't really want to hear us, Mindy and Mimi. They just wanted to hear the story. So, and we kept saying, Well, what does this mean? And so I thought, you know, right, you know our stories. So if you are a brand new listener, first of all, welcome. This is what I hope will be the first of episodes where we invite eight to 10 listeners to tell us their story so that ours aren't the only ones that you hear. Very briefly, I'm Randy Kay. My son, I call Ben in the public world. He has schizophrenia. He's 40 years old. He's currently on a scale of one to 10. I'd say doing on a five. I'll just leave it at that. And my book is Ben Behind His Voices. Mimi, would you just do that brief an introduction of who you are?

SPEAKER_02 1:55

Sure. I'm Miriam Feldman, Mimi. And um, my book is he came in with it. And my son is Nick. And I put it around a sixth right now.

SPEAKER_03 2:10

Hey, Mindy. Mindy Gryling. My book is Fix What You Can, Schizophrenia, and a Lawmaker's Fight for Her Son. Jim is doing really well since he has been on clozapine for the last three years and getting it properly prescribed for almost two years now. So I would put him at a nine.

SPEAKER_00 2:32

Let that give us hope. So, two things of business to take care of. Not really business, it's spreading resources for you. So Mindy brought this to our attention. Uh, we did an episode with Dr. Judith Smith, who's the author of a book called Difficult: Mothering, Challenging Adult Children Through Conflict and Change. And she would like our listeners to know that she has created by popular demand a support group specifically for mothers. It says mothers. I don't see why a dad couldn't do it, but this is what she said mothers of difficult adult children. And she's offering these virtual support groups, joining a group. She's going to do a bunch of them. She is a psychotherapist. The format of the group is virtual. The groups will have a maximum of 10 members and we'll run about 75 minutes, and the fee is $25 per session. You pay monthly. Financial aid is available. It's an opportunity if you're interested. And to find out more about that, I will put it in the show notes. There is a place you can go where you submit a form with your day and time availability. And her email is Judith Rsmith at difficultmothering.com. So I imagine difficultmothering.com might be a website, and you could probably go there and find out about that as well. Mindy, was that pretty much did that cover what you had to tell us about that? You did very nicely. Okay. Thank you for that. All right. We like to also offer, you know, resources to our listeners. So the other thing I wanted to mention, and usually we do this in the middle of the podcast, but I don't want to interrupt the stories. We also want you to know about other wonderful podcasts that we've come across that are doing what we're doing with a different way. So there is a podcast called Look Again Mental Illness Reexamined, and it comes out of Canada. It's brought to you by the BC Schizophrenia Society and Supporting Partners. And it's a really wonderful podcast as well. So I will uh play a little recorded promo for them a little later in the show, but I wanted you to be aware about that. And why don't we get started? This is our show where the listeners are in the spotlight. And here's the process we're going to follow. It's very similar to if you've ever been in a group where there's a talking stick, and we follow a similar process. And we just want to give you a chance to speak. We had at least 30 people volunteer to tell their story. So I picked the first 10 that said yes, and you're here. So thank you. Actually, one came down with COVID and one had to work tonight. So there's eight of us that I know of, and I know there are other guests here as well. So stand by. The process is this. I'm going to start with Deborah, and you will have five minutes. I've I've prepared all the guests to just practice and try to tell the story within five minutes. We want to know who your loved one is, or if you have schizophrenia yourself, if it's you, thank you for coming out with your courage. We want to hear your story as well. I hope that you will include some of the strengths of your loved one, maybe who they were. They still are who they are, but what they were like before the illness struck. And then whatever you want us to know about what you've gone through, what the family has gone through, crisis, chaos, understanding any particular story you want us to know that you think really brings home what you go through or are going through. And toward the end, we want to know where you are right now. But you've prepared your stories. That's kind of the gist of it. All I'm going to do is call your name, mute my microphone. The rules for the rest of us, as hard as it will be, is that we are not to comment, we are not to ask questions. I'm not going to ask questions. I just want to hear you. We are just going to listen. We do have a chat room available if you want to sort of shoot an emoji or something. But I think the most powerful way is if we just listen. Any questions? Okay. So if everybody but Deborah right now would turn their cameras off, the microphone is yours whenever you're ready.

SPEAKER_05 6:58

Well, thank you so much for um inviting and giving us all the opportunity to tell our stories. I think that we're in a safe place with everyone here. And um we all share similar stories. Um Nick grew up uh just a normal kid. He was an amazing student. Um, he was an honor student through high school. He his teachers just glowed. You know, Nick was just the model student for I mean, he's so kind, he's such, you know, he he was he was in a uh parochial school, so he has such a Christian attitude, he's so nice, and he helps others. I mean, just I couldn't put I just couldn't fathom that anything was wrong with him. Now he did exhibit some really passionate, uh passionate ideas about hobbies that he had that were really constructive. Um, we'd go on vacation and he'd go fishing and we couldn't pull him away. You know, Nick, come on, that's enough soaking bait. Let's go, let's go do something else. Let's go to the beach, let's just do something. Yeah, gotta do this. And he would do it for you know all the way till nighttime. I'm like, Nick, please, we're done. You know, tomorrow we're not doing it so early. Anyway, he was just a loving joy to have. I could not have even thought that this could have happened to him. Um, Nick is now 29 years old. His first symptoms happened when he was about 18. Um, what came first, the chicken or the egg? Did the illness come? We did have some unusual CD habits popping up when he was growing up. Um but then he also dabbled in marijuana and stuff. And so, you know, which one which one came first? We don't know which one turned it on. I don't know. All I know is that all of a sudden at 18 or 19 years old, I started wondering: do I know this person? Who is this person that's living with me now? And he started becoming more difficult. Um of the most difficult crises are just heartbreaking, you know. Um, there was a time he broke into his father's house and he had a metal pipe in his hand, and he laid in wait for his father to come home, sat on the sofa with a rock under the sofa and this metal pipe, and his dad walked in. His neighbor had called and said, Hey, I think someone's broken into your house because they heard large, loud crashes. His dad walked in, and just you know, next thing I heard, because I was on the phone with his dad, I heard a scream and the phone went dead. I thought he killed his father. He held the police off for 45 minutes, telling him to get off his property. He was at his father's home and he was telling everybody this is my property. And so he spent some time in jail, and I kept telling everyone it's a mental health issue, and no one would listen. You know, they treated it as if as a criminal case, and because he has anopsygnosia, so he is schizoaffective and has anopsygnosia, and I want to put that anosygnosia smack jab in the middle front of everything because everything else is secondary to that anosygnosia. My son is not living a good life because of analygnosia, and it needs to be a separate classification, a separate DSM V. It does not belong underneath. So, you know, he he got bad. I I brought him in the house, I brought, I got him on AOT. He continued to decompensate. I'd ask for help, nothing would happen. Uh I'd ask for the police, you know, for help with his therapist, something's gonna happen. And they're like, there's nothing we can do. And they would refuse to put him in the hospital until I called 911 and I was locking myself in the closet, and he wanted to kill his brother.

SPEAKER_00 11:25

I mean, we we've had a lot to go on, and so 30 30 seconds, so you're aware to tell us where he and you are today.

SPEAKER_05 11:34

So Nicholas is no longer home. Nicholas is unhoused, and I don't want to use the word homeless in Santa Monica. He is delusional, he's lost over 50 pounds, he's been on a uh on a hold, and they put him back on the street. Um, the system's broken, there's no compassion left out there. They're burning out. Psychiatrists and hospitals are ignoring the patient's needs. LPS conservatorship has gone out the window.

SPEAKER_00 12:10

Deborah, your time, your time is up.

SPEAKER_05 12:12

So if you could, I know, just finish what hospitals are paid for that acute thing, acute time. And after that, they got to turn those beds like a like a restaurant table. He's Nick's incapable of making a rational decision, and law enforcement just tells me that he's in charge of his own devices, and they even don't want me to file a missing person's. So at this point, I'm a frustrated mama trying to save her baby.

SPEAKER_00 12:42

Thank you very much. Shannon, you'll be next. Sorry, I'm emotional. I heard that touched me.

SPEAKER_08 12:52

My son was uh I was called in my tender heart, you know. Um firstborn. This is him with his grampy and me, and you know, we were um a normal family, um military family. So we moved around. Um when he was about 12, he had a concussion. He was playing football um and uh got a severe concussion. So we we don't know exactly what happened or if it you know is genetic or whatever. Um we moved to Utah and I I started seeing some changes with him and I didn't equate anything really wrong. I just thought, you know, you know, we're moving and he's he's getting in the teen things, you know, and stuff. And um he was very he could pick up any instrument and play it. He was very uh very social, very like, you know, we we did plays. Um he was Paul and um the uh Bible, the um, you know, we did BBS and he was Paul and he loved to be theatrical and stuff. And uh then we moved here to Minnesota. Um and he he really missed Connecticut, you know, we're from Connecticut originally. He really missed Connecticut. He really missed so I would always drive my par my my kids back and forth to see their grandparents, you know. And um in 2019, um, evidently my son had a psychotic break. He he um my dad asked if uh, you know, Marcus could stay and um, you know, live with them. My dad did real estate and everything, and I thought it would be great because Marcus was kind of like, you know, had to push him through school a little bit. He got a little disheartened with that and he got a little, you know, kind of like, you know, wanting to go back and everything. So like I said, I thought it was moody teenager and just going through that, you know. I had no idea. I didn't know anything about any kind of psychosis, anything. Um, and one day I got a phone call and I heard that two parents were murdered, two people were murdered on Morgan Street and Uncle Zelf, and I just knew it was my parents. I talked to him the night before, and everything seemed to be fine. He was fine. I don't know what happened from having that conversation with him. And then I talked with my mom and I said, uh, you know, I'll I'll talk to you tomorrow, tell daddy I love him, uh, give daddy my love. I'll talk to you tomorrow, babe. And that was it. They're gone. Um he wound up going to uh Manson correctional facility. Um I I first want to say that he he tried to he tried to like burn the house down. He did really like a crazy thing that he wound up calling the police and saying that two people were dead inside. And um then he he admitted that he did it and and it was like when I saw the the picture of him, it was void, you know. The little guy who had the light in his eyes, that light. He always had a light, he was always tender heart, he never wanted to hurt anybody. And um now he's in now he's in a psychiatric facility and I'm here with my teenage daughters who have gone through this with me and we're in the process of healing, you know. Um there was really no support. I was looked at the bad guy because I took my son's side and all I can say is is that I had to get him out of the prison system because I figured a psychiatric facility would be the best. So I advocated for him for that because you know, he kept having these like flare-ups and problems with medication and the the psychozepine or whatever that is. He they tried him on that and it gave him heart issues, and he wound up having to go to the um emergency room for heart issues. So he can't take that. So he's on the respite all and the Benadryl. How's he doing now?

SPEAKER_00 17:34

No, he's okay. Thank you. I I think we're all uh there's a theme here that we all wish I could give everybody a half an hour for these stories. Uh thank you for sharing that.

SPEAKER_08 17:48

Thank you for hearing me.

SPEAKER_00 17:50

Just stay with us. You're you're with kindred spirits here. The next story I have been asked to read. Evelyn wrote it and asked me to read it for her. So I'm looking at the words, it will definitely be less than 10 than five minutes, but I'm gonna time myself anyway. My son is 14 years old. He was diagnosed with schizophrenia a year ago. Before schizophrenia destroyed our lives, my son had an amazing sense of humor, was very sympathetic and outgoing. In March of 2021, everything changed. He stopped coming out of his room, refused to eat, and didn't talk to anyone. Just six months later, he had his first psychotic break and ended up in the hospital for his first inpatient's day. This was followed by a second inpatient stay and two medication changes. My son was discharged, but wasn't his old self just better? We are now almost two years in since this began, and he still isn't completely stable. His cognitive skills have declined. He still has hallucinations and illusions daily. They're not as bad as they were in the beginning. And his doctors have led me to believe that this is his new normal. The hardest part of all of this is the roller coaster ride that this mental illness puts you and your entire family on. It's a constant stress, not knowing if any change or obstacle in his day-to-day life will trigger more positive or negative symptoms. I'm constantly on edge, as is everyone else around him. His doctors have been supportive and extremely helpful, but I really wish there were more options for him. Unfortunately, due to his age, it is hard to find a doctor that will prescribe him a life-changing medication, which she believes is closapine. And you know we're all a fan here, but this isn't a clozapine podcast, but this is what Evelyn says. And we agree. As hard as this is on us, I know that my son's daily battle is so much harder because he is the one experiencing all of these horrible symptoms. He has been through so much, but I'm still so thankful for the days that he genuinely feels great. I want all of the families going through this to know they are not alone. We are here. And thank you, Evelyn. And Sammy, her son. You know, regarding medication, we do what works. That's all we say. We do what works. So thank you, Evelyn, for sharing your story. Linda. Okay. I did mine in three minutes, but it wasn't mine. It was written. So I'm starting you again at five and welcome.

SPEAKER_04 20:43

Thank you. Mine is written as well. It's a little different. So forgive me if my eyes glance down, but I thought it'd be easier to read. I longed for an instruction manual. How could there possibly not be directions for such a dire and complex situation? With each incident, I racked my brain, queried many professionals. How am I to know what to do with this advanced and complicated problem? How do I get someone with anasygnosia into treatment? Are you kidding me? Figure this out myself. There's not a step number one, take out your toolbox. Step number two, make sure you have a hammer, nails, drill, and so on until your project is perfectly complete. I didn't know what to do or where to turn. Forging my own path, I cried a lot, argued, tried to reason, incentivize, set limits, found as many treatment resources as one could imagine, met with specialists in the field of you name it, went to many peer support groups for myself, and basically lived in the land of sadness, frustration, pain, and grief for many years. Watched my beloved son making decisions that I knew would bring him deeper into his challenging world, and there wasn't a darn thing I could do to convince him otherwise. No one was able to advise me other than get them into treatment, no matter what it takes. Set limits. Change your locks. And lastly, you just have to live your own life. Psychosis is part of the underbelly of the vast mental health world that remains a large unknown, both its etiology as well as viable treatment options. And as for us, the families, we all know there's an enormous gap in support services for us, yet we're asked to manage an extremely difficult situation on our own. So now imagine a photo montage in a movie moving quickly through 15 years, beginning at around age 24. My son is out of touch for a couple of years. I don't know where he is, where he was, where he is. He becomes derailed from his career. I finally find him living in a rodent-infested rooming house. He begins to develop lots of physical medical problems. Finally, he lands in a good living situation near my home and is actually living a pretty stable life now at age 39. I'd like to share some of my manual that I've created along the way for myself. Hopefully, it'll help some of you listening. Learn how to distinguish healthy language, judgment, and behaviors from the unhealthy or unsafe ones. Listen between the lines. Try to understand what's really being communicated, even when it seems so illogical. Clarify what's acceptable and what isn't for you in your life. Create a quote board of directors for yourself. Who will you turn to for various aspects of managing your loved one's condition? I now engage only with the healthy parts of him in conversation, especially if it starts to escalate. I provide what I can to keep him safe, fed, housed. When I'm burned out, I say, I can't do it today, but I will later or tomorrow. I've reclaimed my home and decide when I can interact with him and when I cannot. He's become more respectful as my limits have become clearer, factual rather than punitive, and make logical sense rather than a knee-jerk reaction to my frustration. Continually finding ways to connect in love in the face of adversity, unfounded anger and blame is anything but easy. But that's what I've had to learn to do in order to stay connected. All of this has enabled us to have a calmer, more collaborative relationship. He's managed to live independently, albeit without ever agreeing to psychiatric treatment or meds. I continue to find ways to connect with him, love him unconditionally, accept him as he is, honor his achievements, support his independence while not resenting his dependence, handle my sadness without it leaking on to him, and providing him as much safety and security as a mama bear can.

SPEAKER_00 25:04

Thank you.

SPEAKER_04 25:04

Thank you, Randy, for having us.

SPEAKER_00 25:07

Thank you. Send me the list, I'll put it in the show notes for of your pieces of advice, your manual. Oh, okay. Send that to me. That would be great. Thank you. Thank you.

SPEAKER_07 25:16

Um, Mary. Thank you. Thank you. And uh hi, Mimi, Randy, and Mindy. So anyway, I'm calling uh in from uh California. I live in Orange County, but I got a lot of my common sense by growing up in the state of Iowa. So I um have a son, and he is now 38. And I'm a nurse, and I started to notice that he started to becoming becoming symptomatic of some neurological problem. Um, he was always as a kid very uh imaginative and creative, and so I knew he had extra networking in that area in his brain, and he could play many, many instruments by ear, and he had become quite prolific uh drummer and pianist and composer. So I thought he was going to go on and become, you know, he wanted to write, you know, music for movies. Probably around there was no substance use involved, but I remember he was, I would describe him as a little kid as kind of like Dennis the Menace, always positive, never saw anything negative in the world, just always walked around like uh just extremely positive. And then I went through a divorce when he was probably about nine and ten. That was quite traumatic. And then I remember him looking at the life in a negative way. It was drastic, or I wouldn't bring this up. Um so from that point on, he did do. I mean, he was doing some acting, he was doing a lot of different, he was quite involved in school. And around 1920, I started to see the signs and symptoms of psychosis. Um he ended up in the ER multiple times and he was always drug testing negative. So I knew there was something really wrong. And that's when I discovered our two separate divided healthcare delivery systems. I think most people don't realize it's divided because what I was witnessing was the exact same signs and symptoms of any as anybody else I took care of that had neurological problems. So psychosis is the same across the board. And I then entered the what most people hear talk about trying to obtain um emergency care for his acute symptoms. And that you know, went on probably unsuccessfully for the first five years to the point his psychosis was so extreme he wanted to take his life. He obtained a handgun and it turned into a quite uh horrific event where police were called and he had a gun to his head, and they used deadly force on him, but missed him within, you know, four times they shot at him. He um survived that, and then the SWAT team came in and took him to jail. And I thought, oh God, now he's gonna get hell. Well, no, he ended up with three stripes, sought with a deadly weapon against a police officer, which took us through mental health court or court just in general. We didn't get into mental health court for a couple years, but we aged the case out. And I would call those my years of involuntary tears. It was almost impossible to navigate, but as you all know here, there's no one there that comes along and does it for you. Now, today we made it through that. He he wasn't, he was placed on conservatorship and he remains on that today. And he lives with us. He's um was still quite sick. We went through the judicial system about seven years, but not until about the last three years going on closetine did his life turn around. So today my son Nathan um travels with me. He's playing his music, he can focus, he's um a pleasure to be around his personality. Has returned, and as you know, that's the most painful thing is to see that absence of them. Um so yeah, that's and that's where I'm at today.

SPEAKER_00 29:58

I hope this helps. Thank you. 12 seconds left, perfectly timed. Julie, you're next.

SPEAKER_06 30:06

Wow, so much emotion. It's like, oh my goodness. So I went to high school in Hawaii and at age 16, I was sitting in a bookstore, and I remember when we used to have bookstores, it's called Walden Books, and I was on this little stool and I was listening, reading the far side comics, and I heard a voice that said, get out. And I looked around and I thought, who's telling me to get out of this bookstore? And I heard, you have to leave. And so I got up and left, having no idea what was going on. And this would happen to me when I was in busy places. It happened to me when I was like at the mall. It used to happen a lot. And as I got older, it would happen when I traveled. And then when I was 17 the next year, I had a pretty wild trip to Europe. I was a different person. I was excited. I didn't need to sleep. I didn't need to do it. I lost weight. It was amazing. I had my first drink, I fell in love. And then I went back to school and everything was like sort of back to regular. And I went, what just happened? And then at 18, when I graduated, I was like, forget it, I'm out of here. And I left without saying goodbye to my friends. I went across the United States and went to school at a university, and then decided that I didn't want to be there, quit, went all the way across the United States, went back to another university, went from Alabama to Washington. And I remember couldn't go to class, couldn't think, couldn't focus. And everybody's like, What's wrong with you? What's wrong with Julie? I remember one night where I took a tray of glasses from the cafeteria, went out behind my school and threw glasses at the trees. Eventually went up to Vancouver, BC, met a guy, fell in love, quit school, flunked out of school. Everybody's like, What's wrong with Julie? What's wrong with Julie? We didn't know. When he broke up with me, I went back to my parents' house, total failure, like whatever. Couldn't finish school and so depressed. And I remember riding my bicycle, and a bus went by, and I had this thought everything would be better if you ran your bicycle in front of that bus. Then it stopped. A couple, it's like a month later, I'm off to Glacier National Park and I'm having the time of my life and I don't know what's going on, and I don't remember being depressed. So, as you guys can tell, I obviously had very early signs of obvious bipolar disorder, which everybody missed, everybody. But what's interesting, and I'll explain why in a minute, is that I didn't start with bipolar. I started with hallucinations. Those were voice commands that I heard at age 16. And so when my bipolar was getting really strong without a diagnosis, I didn't know the difference between psychotic disorders and bipolar, which is my work now, and this is my expertise. But back then I do not knew nothing. So for 15 years, I was sort of all over the place. And like many people with bipolar, brilliant, and then quit. Brilliant, quit. And I went to Japan and I met the most amazing man named Ivan across this bar in Tokyo. We fell in love. I moved in with him after knowing him for one week. We know what that means. We fly back, I go back to Seattle, and one night on his 21st birthday, we start to notice he's acting very strangely, cannot figure out what's going on. And he looks at me like this and he says, I know you've been seeing your ex-husband. And I was like, Who is this person? What is going on? I had no idea. I was scared. It was really horrific. And over that weekend, he went into a manic psychotic episode. And this was the beginning of him spending three months often in four-point restraints in a hospital in Seattle, Washington, diagnosed with bipolar one. And I remember the night I called the emergency, I called 911 and the ER, and they said, Have you ever heard of an illness called manic depression? This was 1994. And I said, No, I have no idea what. I don't know, even though I had literally been born with it and had been having symptoms for almost 15 years. Uh no, but his dad, I think, has something called that. Nobody in his family ever told me about it. All they said was his dad had something, and that was it, right? So he was diagnosed with bipolar disorder, and then I was diagnosed with bipolar the next year. But what we figured out, though, is that my symptoms were so much more than bipolar. And now looking back, I realized that my main symptom was absolute paranoia. It was the reason I was really not able to handle a job. It was the reason that when I'm a writer and I would get these book deals, and instead of being excited, I would think they're cheating, they're lying to me, they're trying to take something from me, someone's following me, something's not right, there's demons behind me, I'm going to be eaten by dogs, I'm going to be killed by a car, I'm going to run my car off the bridge. And so when I was finally diagnosed with a paranoid psychotic disorder on the schizophrenia spectrum, it was one of the greatest things that ever happened to me. Because knowing that since age 16, that not everybody hears people telling them what to do, not everybody thinks they're being followed, not everybody believes you're being stolen from. My first psychotic episode was at age, seven, sixteen. My last one was two weeks ago. I had a two-week psychotic paranoid episode because I finished a book and started a new website, and my brain just goes a little bit all over the place. Julie, your time is up. So if you could just wrap up your last thought. Wonderful. Uh, one thing I hope that we can do is talk more openly. I'm very proud to talk about this. I love talking about being on the schizophrenia spectrum. It's not a word that scares me. And I hope we can be more open about those of us with bipolar, schizoaffective, and schizophrenia. Thank you.

SPEAKER_00 36:01

Thank you so much. We had someone scheduled who I don't see, so we're going to move on to Cheryl. Cheryl, are you here? Thank you, Julie.

SPEAKER_01 36:12

Wow, okay. I have some notes as well. Um, my name is Cheryl Cheryl, and I live in Idaho. Um, my son Isaac was wonderful, beautiful, like lots of these kids, star tennis player, 4.0 student, interviewed at the Coast Guard Academy, um, star debater, um, wonderful, loving son. Um, I played tennis as well, so he was my tennis buddy. We sent him off to private school. He went to a private liberal arts school um in Idaho. At the end of his freshman year, he called and said, You know, there's something wrong. He wasn't finished with his classes because there's something wrong. I can't study, I can't do anything. So I drove down there. He was telling me he was hearing the girls next door talking. I knew he couldn't hear them in the room. And he and I and we I took him to the hospital. I didn't know what else to do. And I remember sitting with the doctor, and he said, you know, this is when schizophrenia starts to develop. And I was like, Oh my oh, my son doesn't have schizophrenia. Gotta be kidding me. You know, I'm like, no, we don't even know what that is. He's stressed out, he's sensitive, he's playing too much tennis. Anyways, so you know, I had lots of notes here about what happened in the next five years. We had a police incident with a taising. We we took him to uh Colorado Recovery Center, he ran away from there, lived on the streets in Boulder for a few years, um, on and off of In Vega, it never worked. So we were through this revolving door. One thing that that that did help with my my son, yeah, going for him. He could get back to school. And so he would be able to main school for maintain school for a few months, and but then he would start smoking dope again, go off his in vega injections, get sick again. So we we were pretty much on a roller coaster until about 2016. This started at 2011, so about five years. At 2016, he topped his meds, he got pretty bad onesygnosia, and basically, I say turned into a monster. Honestly, I that's the only word I can say. And and I I didn't know who he was. He started to try math, he became violent with us. He we live in a fairly small town, he was living on the streets with the homeless people, he had you know hair, matted hair. Um, we we didn't know what to do. Uh and like, you know, the other moms had said, what do we do with him? Finally, um, we got guardianship. We we didn't want to. Um, again, I wish we would have done it earlier. Tip for moms get guardianship. Um, he was home one day yelling at us, screaming at us. He was violent with my son and my my husband, and we got a Zoom call with the counselor because we had guardianship. So this counselor gets eyes on this person in our home, and they couldn't forget it. And so they got a hold of the sheriff, and the sheriff actually picked him up off of the street. Um, and that incident changed our life. Um, he went to the behavioral health unit. He was 29 at that time, so this is 10 years later, after going through everything we could try to do to get him help, we couldn't. So he's at the behavioral health center, and I I met um someone from Team Daniel, Rachel Strife, on the call. And um, she she recommended reading the Closet Bean Handbook. I've read all of your books in the meantime. I've been reading your book. Ben Behind the Boys is one of the first ones I read. We somehow managed to get a hold of Dr. Lateman, and he just took us on here in Idaho. We had a PA who had gotten eyes on our son. He took on the medications. And so for the last two years, we've had the most excellent care. And my son is back, he's going to school again. Um, he's got his personality back. He he's aware of his illness. He take he's taking his meds because of proper medical care. And I I hate to hear you know some of these stories and what moms are going through. And we went through hell for 10 years, which we didn't have to. Thank you. There's wonderful, there's wonderful treatments. Um, it's a ton of work cutting up pills. I do, I didn't know, I know all these medications now. I never thought I would have known them before, but there's things out there that can help. And it's so frustrating that it's so difficult to get good help. It's so frustrating. And um, anyways, um, I have a lot more notes than that, but five minutes goes very quickly.

SPEAKER_00 40:33

All right, thank you. You had 30 seconds left if you want to add.

SPEAKER_01 40:39

Well, I just you know, the only thing I want to add, you know, and I know I'm not doing a plug, we're not supposed to be doing plugs for closapine. Clozepine and Rob Layton saved my son's life. And we live in Idaho, and you know, we're and he's in New York. Um, but you know, there are treatments that'll work and families willing to work with, you know, we were willing to do the work too. And and I know other families are out there. Um, it's just education, information, and proper medical care.

SPEAKER_00 41:03

Thank you so much. Before we move on to the next part of the process, I want to take a moment again and remind you of other resources like this podcast called Look Again. You know, the community of families dealing with serious mental illness is not confined to schizophrenia, Three Moms in the Trenches. When we run across another podcast that we believe in, we want to share it with you. This one comes from Canada and it's called Look Again, Mental Illness Re-examined. If you want to learn more about mental illness and its impacts, but you don't know where to begin or how to continue, take a listen. The title once again is Look Again, Mental Illness Re-examined. It's a podcast that aims to start important conversations around serious mental illnesses like schizophrenia. Follow Phaedra Aldridge, CEO of the BC Schizophrenia Society, as she connects with medical experts, families, and people with lived experience. Listen to season three of Look Again wherever you get your podcasts. Thank you all so much for sharing. You can put your cameras back on if you want, so we can all be together. So, what happens now in this process is I'm going to reserve my reactions and I'm simply going to read a list of common themes that we just heard. Then I'm going to ask Mimi and Mindy to comment, and then we're all we're going to conclude with each of you sharing those two things. What do you most want the system to know, practitioners to know? And if you haven't told your story tonight, you can still participate in the chat room. That's fine. And then what do you do to take care of yourself? So these are some of the things I heard from all of you. And, you know, again, thank you so much for opening your hearts and your lives to us to share with all our listeners. A lot of the before. So what do we have here? Mostly parents and um a significant other. That's what we have here. Sometimes it's siblings that speak, sometimes it's children of people, but it's mostly the parental point of view. But one of our stories was about a significant other. But, you know, it's the before. They were normal, they were brilliant, they were creative, they were tender, they were talented, they were kind, honor students. Some hints, but looking back, how are we to know? We thought they were just moody, weird habits, maybe a little bit too intense with their passions. Many of us did what we all do, it's called normalizing, which means we go, well, maybe it's, you know, just a normal phase they're going through. Possibilities of second hits, meaning a stressor that might have triggered the illness. We don't know. Maybe it was marijuana, maybe we moved around too much. Maybe it was the divorce. Maybe it was the concussion. The crises you all shared, suicide attempts. Who is he now? Where is she now? Where is he now? I don't even know them anymore. Um, violence, a lot of violence in these stories, uh breaking and entering guns, burning the house, murder, police, jail, ER visits, moving on from violence. I constantly heard no one listened to us, no one listened to us. We said it was mental health. I heard a lot of love, a lot of unconditional love, a lot of frustration and testing of that love, a lot of mentions of anasygnosia, which, if you're listening and you don't know what that is, that's the lack of awareness that you're ill. It is not unique to schizophrenia. It happens with stroke victims or anything where the brain is affected, uh, versus somebody like like Julie, who's aware of her illness and therefore is able to accept treatment and have pride. So that awareness is the kind of the opposite of anasegnosia. Uh, we heard helpful things or like conservatorship for some situations now range from housed to unhoused institutions, delusional jail. Some of the um gripes well deserved are no support, systems broken. We've had to do all the advocacy ourselves. It's a divided healthcare system. Why is it more important that he be in charge of himself or herself than that they get help? Uh things that help, setting limits, reclaiming your home, the unconditional love and the advocacy that you've done. I heard comments of feelings like frustration, tears, crying, fear. And I think that sums up all of what we share today. And I'll just send you all a big virtual hug. Um Mimi, would you like to?

SPEAKER_02 46:18

Yeah. Um you know, it's funny, I'm usually the uh irreverent funny one, but somehow listening to this, uh and it hits me sometimes when I do uh the parents group on Sunday on Saturday mornings, the amount of suffering that surrounds these diseases is so overwhelming. And the things that we all go through, and every one of us, you know, when I listen to these, I think, oh god, people who know me think I've been through the ringer with Nick, and then I go and listen to these stories or listen read the and I realize it always could be so much worse, it's not even that bad. But but to me, I think that people don't understand and don't realize the level of suffering and the level of pain, and the fact is that a large percentage of that suffering is unnecessary. It's bad enough that they have these diseases, and it's bad enough that we have to deal with that, but the system that exists supposedly to help us is a whole nother morass of suffering. And you know, it's like if your loved one had cancer and you had to fight the system to get them help for their cancer, it's just an unnecessary deepening of the pain. And um, you know, as far as the pain, all I can do is just keep putting my love out there and keep telling my story and keep telling you you're not alone. But we need to really get down to changing the laws and changing the system because it is ridiculous. Sorry, no joke.

SPEAKER_00 48:19

Thank you, Mayor. Mary, I see your hand. I'll um let me just have Mindy just share a minute or two of her reflections and then and then Mary, and then we're going to have to we're at an hour, so we're going to have to um end this with the positive tips that you're going to share. But go ahead, Mindy.

SPEAKER_03 48:40

So um Mimi gave me a perfect handoff. I would say, Shannon, since you're in Minnesota, my email is mindygryling.gmail or at gmail.com. And I am working with some legislators in Minnesota about some of the aspects of the judiciary system, earlier intervention before people end up even being civilly committed. So I would love to connect with you and see if you wanted to um in any way get involved in that. So I would say that it's so important for people to advocate and to try to change the system. The commonality that Randy mentioned here is that we all, every one of us here, including Randy and Mimi and me, were in denial. We did not know what we were dealing with. Um, it's just endemic to this whole situation, and there's not that much out there to help us know at the beginning. And then we're held back all along the way and told to let the person decide and stay out of the way. It's just um immoral as far as I'm concerned. I would like to end with um Cheryl's comment, and that is there is um with proper medical care, the no matter how in the depth most of our family members are, they can come back if they get um the proper medical care. And you know, I am a big advocate for clozepine, and that's what brought my son back, where I was afraid he was going to kill me. We had tons of problems, like everybody talked about here. For the person who said their family member can't take clozapine because he had heart problems and so forth. I would say get on Team Daniel, because I bet he could take it if it was prescribed properly. Most doctors don't know how to do that. And um, I wouldn't give up.

SPEAKER_00 50:42

Okay, thank you. So, what I see, I I'm gonna turn everybody's attention right now to the chat room because there are a lot of lovely comments in there, thanking each other. Um, Tim and Pam, I I I'm hoping that you will come back and share your story out loud. Um obviously we we're not here to I would love to solve everybody's problem, wouldn't that be nice? But uh we're we're sharing our stories. And so I turn everyone's attention, everybody can see the chat room. And if you want to see uh Tim and Pam's contribution, but Pam, with your permission, can I just read the last thing you wrote out loud? She just says, Thank you all for sharing your stories. You've touched my heart. I'm not alone. So much in common. I hope to share my story. It really helps. What beautiful people you all are. I remain hopeful, and that's why we do this podcast. So, with that in mind, I'm gonna ask you those of you who have access to your chat room, just type in there right now. Um, if there's one thing you would like practitioners or people in the system to know. I know there's a list. What one thing would help you the most? And I'm gonna just start in by typing in early detection. But go ahead and type them in and I'll just read them out loud. What would you most want people to know about what families go through? Include the family. We're on the front line and can give valuable information. There's a lack of resources. We can teach insight. Insight training is possible. Change HIPAA laws. By the way, if you're if you're new to our podcast or not, we have many, many episodes on a lot of these. So we, Dr. Lateman, we did one on HIPAA. The other podcast, the Look Again podcast, has specific episodes on those interviewing experts as well. So I turn your attention. Uh, behavioral health must must work within their scope of training and partner with physical health care. Family members can get better. Mental illness does not belong in prison. Anosygnosia, there's no rock bottom for a patient unable to understand their issues. Thank you. And one last thing. Oh, there's more. Anosygnosia and family knowledge. HIPAA is against the family helping adult mental illness. We need better care. We need more help for family members. We couldn't agree more. So to end on a positive note, if everybody could just type in one thing you do to take care of yourself, one thing that helps you find rekindle your joy for however long it does that. And go ahead and type it in, and then I'm gonna don't put don't hit enter yet. I'll ask everybody to so type one thing in. Because you know, in our other episodes, Mimi and um Mindy and I talk a lot about finding your joy, even though. Whoa, look at all these awesome things. Okay. Walks in nature, taking a walk outside, unless it's icy, pray and recreation, digley walks in nature and pedicures, supportive friends, food and drink with other family members, talk and laugh, friends, take time from me, stay in touch with friends. This is not forever, spirituality and faith in the dark times, mindful of any distress and discomfort, and take care of my needs on the spiritual level. My mom, laugh, and walking the dog. All my storytellers tonight, and and my listeners who are here in our YouTube square here and who will come back and tell their stories. I want to thank you so, so much for your courage. And we will honor you by getting this out and tell people to listen, and maybe they'll listen to us, and together we can make a change. Thank you, everybody. 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.