Who we are, what we know, how to cope (Ep. 1)

• Why this podcast? - a place to tell the truth about SZ in the family 
• Our stories, sons, our books (and why we wrote them)
• Who were our sons ….before?
• Where are our sons today?
• What has been the hardest thing about this so far?
• PEOPLE ARE ASKING...What we wish we’d known earlier 
• Each close with message:
  • Mimi - Joy is still possible 
  • Mindy - advocate!
  • Randye - It is what it is - savor every good moment but lower expectations
• How to get in touch with us 
• Please share! And send questions you want us to talk real about
• Join us again for next Episode: Sharing what has helped us - tips through the trenches

Transcript

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SPEAKER_00 0:01

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 Kay. Finally, a place to talk about the truth. Welcome to the first episode of Schizophrenia Three Moms in the Trenches. We really tried to get badass in the title, but we kind of thought it was overused. So it's Miriam Feldman and Mindy Griling and me, Randy Kay. And we just thought we'd start this episode with just getting to know you and you getting to know us and our stories. We're three adult moms with three adult sons with schizophrenia. And we, I want to say we've been through the ringer, but we're in the ringer where my husband and I were trying to figure out what carnival ride it's like because roller coaster is just so overused. Whack-a-mole. Whack-a-mole is it? That's a good one. I like that. Sisyphus pushing the rock up the hill and coming down. I'd like to start with just introducing ourselves and uh getting the audience to know us a little bit. We're not only badass moms, we're also authors and activists and artists. And Mindy, why don't we start with you? Since you looks like you had almost a virtual book event today, and your book just came out. Tell us a little bit about yourself and your son, and we'll get details later.

SPEAKER_01 1:31

I'm in I am Mindy Gryling, and I served 20 years in the Minnesota House of Representatives. Before that, I was a teacher, a stay-at-home mom, and I served on the school board. So naturally, my legislative agenda was education. But after son Jim got diagnosed with schizophrenia in 1999, it seems like a very long time since we've been dealing with this, um I pivoted to change my legislative agenda to include mental illness. I've also served on the National Alliance on Mental Illness National Board, and I'm the current president of my NAMI chapter here in Minnesota.

SPEAKER_00 2:12

Okay, and if anyone doesn't know what NAMI is, can you tell us real quick?

SPEAKER_01 2:16

Sure. It's a group, an organization, the most powerful mental health organization in the country now that advocates for people with mental illness and uh and their families. Um so it's uh it's a very good starting point to get educated about mental illness. We probably all took family to family, right? Yeah. Then um teach it, yeah. It's a place where I can be with people who understand, like this group tonight, and also um where I can advocate and try to make the mental health system better, more power with more people.

SPEAKER_00 2:52

Okay, thank you. And we'll get to your book in a second because that's important to uh Miriam. And do you want me to call you Mimi or Miriam for the Mimi is good. So tell us a bit about you, and we'll get to our books in a second.

SPEAKER_02 3:05

Okay, I'm an artist and I've supported myself as an artist my whole life. I recently once life delivered a uh story that I didn't feel I could adequately tell with paint, became an author and wrote a book. But I lived in Los Angeles my whole life. I'm a painter and a mom of four. And um, you know, my son was diagnosed right around when yours was Mindy too, just 1999, 2000. So I've been doing it a long time too, and I'm really happy to be here because the thing that I remember is sitting in my living room in Los Angeles, looking out my big hundred-year-old glass window, picture window, and feeling like I was the only person in the whole world who was going through this. You know, back then that was 20 years ago. People weren't talking about these things the way they are now, and there weren't Facebook groups, and there wasn't any of that, and the isolation was terrible. And boy, what I would have done to turn on the radio or something and hear some moms talking about it. So I think that that's why I'm here. I think we need to start talking about it and telling our stories and creating a place in the world for our kids and for our families.

SPEAKER_00 4:31

Thank you. And I'm Randy Kaye, and I I too have made a living in the glamorous field of acting, which is never as glamorous as you think it is. Uh, I do voice acting and acting, I'm a radio broadcaster. And when I was a morning show sidekick, my son was getting stranger and stranger and stranger. And what started out as humorous stories to share with my co-hosts on the morning show of my crazy teenage son became me showing up for the morning show at 4 a.m. after spending the night in the emergency room with my son trying to convince them that something was wrong. At that point, the humor kind of went out of it for a while, but you know, the humor comes back. So I have a son, he was diagnosed finally in 2003. So we've been doing this a lot, and things go up and down, and we each wrote a memoir about it. Mine came out, gosh, well, it's 2021, 10 years ago, been behind his voices. I've copies of all yours here, so I can hold them up if you don't get them. No, I've got it. I've got it.

SPEAKER_01 5:37

Oh, I've got mine, I've got mine.

SPEAKER_00 5:38

And she's got a glass of mine. So you're all set. I'm all set. Here we go. She's got a ring light. What else? No, I'm I'm trying a dry January. So I've got January in my red money in my water. Um so sad for us. Wait till our show in February, then we'll really let loose.

SPEAKER_01 5:56

Randy, how did you get so fast getting your book out? Your son was diagnosed four years after ours were, and still you got your book out way ahead of us.

SPEAKER_00 6:05

A decade after his. Uh, you know, what happened is I was teaching Nami, family to family, and some people say NAMI, some people say Nami, but whatever. It's it's both fine Nami rhymes with mommy. So we often say that potato and potato. Exactly, exactly, whatever it is. So I was teaching family to family, and as an actor, I love to tell stories. And people are like, oh my God, you should write a book. And at the time, there really were very few memoirs about schizophrenia. There were some wonderful ones about bipolar and depression, and but schizophrenia, the bastard child of mental illness, like nobody was talking about it. And if they did, they were hopeless. And by 2011, my son had been hospitalized seven times, but was stable. And he was starting to get his cognition back and his brain back. And I just wanted to give people hope. We'll talk more about that, but I didn't read any memoirs. You know, when you write a book, the first thing they do is say, go and look what else is out there that's similar to what you want to write, but everybody's story is different. I couldn't find one memoir that gave me any hope about schizophrenia. I found information. And so at the time, my son was taking some college classes, and that was huge compared to five hospitalizations in one year. And he was actually getting good grades and living in a group home. And I'm like, if this is as good as it gets, if I've got him back 45%, I'll take it. So I was encouraged to write the book, and it was not fast to it. It wasn't too bad to write it because I left the morning show and had six months of severance pay and time to write. So that was helpful. But yeah, so mine's been out almost 10 years. The paperback came out about a year ago, and I wrote it for the same reason we're doing this podcast, so that people don't feel alone, so that providers know what the family has gone through because so many of them thought I was the problem. We could talk about that in a second. And so that people with schizophrenia might understand their family point of view as well. My son's name, by the way, is not Ben for the purposes of anything in the public. He's asked me to call him Ben, so I call him Ben. So, Mindy, you held your book up. So tell us about your book and you know the purpose of yours.

SPEAKER_01 8:30

Well, first of all, I will say, Randy, I read your book um when you when it first came out, and it did give me hope. So thank you for that. That was I kept it. I read every book I could get my hands on, and a lot of them I recycled, but that one is still on my bookshelf because not only did you give me hope, but you have a lot of good information in it that um is helpful. Thank you. My book, I waited um until I retired from the legislature. I just plain didn't have time when I was running for election every other year, when I was saturated at the legislature trying to fight for the mental, a better mental health system. And also he did well for several years, but then he got kicked out of his program where he was really stable because he met a woman, he started using drugs. And um, and when I left the legislature, he had just caused a very serious car accident. And that was part of one of many reasons I left the legislature. But when I did, I got invited to be in a memoir group at a writing group at a Locke Literary Center in Minneapolis. And um I was just writing stories, I wasn't thinking of writing a book, but quickly, I think all of us feel a calling when we have been dealing with this as long as we have, then to be able to tell our story, get empathy for people like ourselves and our sons. And also in my case, um I wrote quite a bit about my time in the legislature. I think it's really important for um families and people with mental illness and anyone who providers to know more about how important it is to get to the halls of so-called power and to talk to elected officials. So that was a plot that I had as well.

SPEAKER_00 10:25

Thank you, Mimi. And your son, I don't think we mentioned his name yet. Your son is Nick.

SPEAKER_02 10:31

My son's name is Nick, and Nick's also a painter and artist. It uh runs in the family. And um, you know, my my reason for writing was pretty much the same as both of you. You know, I was um I was so ill prepared for this when it happened. And to me, serious mental illness is like a gale force hurricane that just blows through your life. And anything that's not securely nailed down, it's just gone. And you look up one day and it's like everything you know and believe in is just up-ended. And um I operated in that sort of panic crisis mode for years. I didn't start writing the book until about four years ago, and I really waited until things were stable, and it took a long time, and it was a really interesting journey for me because it was a reckoning and it was it was it caused me to look at each member of the family like a character, because each of them was a character in the book. So I had to understand them and flesh them out and do it in a way that you know, when you're in the middle of this storm, one of the things that's really bad is that you you tend to neglect the kids that are not sick because you're attending to the one that is sick. So I was able to revisit and go back and try and understand and understand their experience of it too. And that was very beneficial. And I think that that would be very helpful to the reader too.

SPEAKER_01 12:09

Thank you. That was one thing I found was um I thought that writing the book and talking about it filled in some spaces where we hadn't covered um what we could have discussed better. Our daughter was already gone from home, she was living in Washington, D.C. So she missed the juggernaut that your kids had to endure when uh they were small. But nonetheless, she kind of got into an early adult mode of caring for her parents from afar that made her not share her problems with us. She had a surgery she didn't even tell us about because she thought we were dealing with enough with her brother. So when we had this chance to discuss the book and everybody reading it, that was really really helped our family communication and understanding.

SPEAKER_00 12:57

Wow. And we all have daughters in common as well, which uh which is interesting. And Mindy, your daughter's older than your son, is that right? Two years older, yeah. Two years older. And and Mimi, what's your family dynamic?

SPEAKER_02 13:10

I have one, my daughter Scarlet is older than Nick, and then I have one who's three years younger than him, and one who's three years younger than her. So I still had two young girls at home when all this started.

SPEAKER_00 13:22

Right. I remember that from your book now. And my daughter is almost three years younger than and she said, I think a lot of times the siblings get neglected. We can probably do a whole show on siblings later on because they're husbands too. Yeah, well, you know, because I you we are, I did most of this as a single parent. I'm now remarried, and my husband, we've been married 10 years, he's been great. This is not a child he gave birth to, but he's been great. He first thing he did when he was my boyfriend was take family to family. So I knew he I knew we had to keep her, you know, the right one. Yes, I mean, we are three moms in the trenches, but there are dads in the trenches and there are children in the trenches of schizophrenia. And the siblings, I feel are the great lost. I mean, my daughter often said to me, When he's ill, I've she says, I feel like I've lost my brother. When he's well, and I use the term loosely, when he's well for him, when he's stable, let's say that. When he's stable, I feel like I lost a big brother, but I gained a little brother, and that's good enough. Interesting. So, you know, that's her perspective. And one time I was being interviewed for a magazine piece, and they wanted to interview her as well. She really didn't want to talk to me about this very much. Like we lived it, so she didn't really want to talk, but they had to interview her without me in the room. But hey, hey, hey, I was in the other room listening in on the monitor. So I got to hear her point of view. And she, you know, she's a was a grown woman by that point. And they asked her, Do you ever think about what it would be like if your brother hadn't had this illness? And she said, What's the point of that? She said, I don't know. I, you know, we got sick when I was 12 and he was 15, and I have no idea. So I just do my best with what I've got. And I I found that interesting because I do a lot of not a lot, I try not to, but occasionally the grief comes to get you.

SPEAKER_03 15:28

Yeah. So he helped.

SPEAKER_00 15:30

Yeah, you know, it's just like any grief. Like you think you're fine, and then a red light comes.

SPEAKER_02 15:35

You know, it's it's like um, I say it's like uh Winston Churchill who dealt with um depression, and he used to call it the black dog, and so that's my thing, and it's actually even a thing in the book, too. It's like the black dog at the door, and it's like most of the time I can ignore him, and he's sitting out there looking so sad, and every once in a while I'll break down and let him in, and every time it's the same thing, he tears up the joint, and that's that's it, that's it. But you got it, that's like great analogy.

SPEAKER_00 16:10

It is so with that in mind, so that people who haven't read our books can get to know. I know there are people listening who are just at the beginning of this journey, and I often compare it to a game of shoots and ladders because you can feel like you're well on your way in the journey, and then something can happen, and you can be back to square two. So let's each talk a little bit about where our sons are now, and it's gonna make me cry. What the world lost when our sons became ill. You know, for me, where my son is now is back in the hospital after nine years of success. So I will just say that after the book came out, he started working. Every time he goes off his meds, everything falls apart. As for most people, that seems to be true. I know there are some people who are in treatment that don't feel they need medication. And whatever works for you, I say. But for most of the people in my experience, medication is part of the treatment and an important part. Uh, not totally discounting other experiences, but I think for the three of us, getting our sons on the right medications were huge. And he relapsed right after the book came out, but doesn't negate the hope that's there because he came out of it and he happened to have an amazing, he happened to have a job at a local zoo, and they knew of his diagnosis. No, they did not know of his diagnosis. Sorry, he had gotten the job. And when he went into the hospital, it came to me to come to them and say, My son's in the hospital, here's the doctor's note, not revealing what it was. Turns out his boss had a son with autism, and we got to talking, and I revealed, and she goes, I don't care what he's sick. If he's sick, he's sick. So you tell him his job's waiting for him when he gets out, which was unbelievable. So he had a job waiting for him when he got out, which is huge. And that followed nine years of actually rebuilding his life. Right before COVID, he was a full-time restaurant server, driving a car that he was leasing and paying the bills for. He had a handful of friends that he saw. He was a great uncle to his nieces and nephews. And then COVID hit and pulled his job out from under him and whack-a-mole, all the moles came up. So he has been in the hospital four and a half months now and shoots and ladders. We're back down to square two. We are trying to get him back on a medication that works and find him housing again. So we're kind of starting the journey again. That's where he is today. At the moment, he is taking medication and he calls me to tell me he loves me. So that's where we are. What the world lost and might get back again is an amazing poet, a wonderful creative writer, a very, very loving big brother and son. And you know, what he lost, we don't want to get maudlined because we don't need to. I mean, we're just telling it as it is. But those are the moments when I go, shit, he was robbed of a life. He was totally robbed. What the world lost was who he could have been as a husband and father, what he can be as an uncle and a son because schizophrenia steals from you. There is still hope, but that's where we are. Who wants to go next? Amy, go ahead.

SPEAKER_02 19:32

You know, what you just said, it's that was the point at which I remember I I felt the worst, sharpest grief was he was still a teenager, maybe, or maybe he was about 20, and all of a sudden I realized one day he's never gonna be a dad, he's never gonna be a husband. And the pain of that, of watching this child who came into the world like every other child, and uh to whom you attached all the same dreams and hopes that every mother has, to watch that be stolen from him. And then the the thing that's also so much worse than that is they have moments of clarity where they realize it's been stolen from them too. And that's just tragic. But back to where he was. Nick was, you know, Nick was a kid who had the perfect easy childhood. It was he was never sick, nothing was ever wrong, he had a million friends, he got good grades, everything was great till he became a teenager. And then I went through several years where I thought it was just normal teenager stuff. But like I always like to say, if you were to make a list of red flags for serious mental illness and a list of normal teenage behavior, you'd have virtually the same list. So you go through all this time thinking, well, they're all crazy when they're teenagers. And then at one point you just realize, well, but my kid isn't growing out of it, it's just getting worse. So that was the point at which we started dealing with it in a different way. And where Nick is now is Nick is on a new medication. He's just started clozapine, he's about six or seven months into it, and we're seeing some amazing progress. So this is wonderful, and we're at a really good point. At the same time, the thing that we know is that it's whack-nole. I mean, you know, yeah, it's great today and everything looks great, but I've also just in the last couple of weeks looking at him, realizing he's kind of plateauing, and then realizing okay, I thought this was gonna be flowers for algernon, you know, and he was gonna without the ending.

SPEAKER_00 21:49

Yeah, without the bad ending, okay.

SPEAKER_02 21:52

You know, and he was gonna snap out of it, and everything was gonna, and it's like, no, it just doesn't happen. So you have to restructure. Your expectations of things. And there's all kinds of great life lessons that come with that that we can talk about. But all in all, the bottom line is it kind of sucks that it's never gonna go away, it's never gonna be what it was before. But then you start finding your happiness and your contentment in other ways in different things. And that's good. Um and so where he is today is he lives in his apartment. We have he has a caregiver who comes and makes sure he takes his meds. And you know, I see him several times a week. He lives close to us, but we don't seem to be getting be able to get him past the point of talking about getting a job or thinking about going to school, or you know, he just doesn't seem to be able to quite take that step yet. But we'll see.

SPEAKER_00 22:55

And I I will tell you that in and everyone's experience is different, but for my son, though that nine golden years, not really golden, there were some slip-ups, but he went from being able to work eight hours a week, he built up. I believe in neuroplasticity of the brain to an extent. So if he's on the closer six or seven months, a year from now, he may be ready for a job. So if he's even painting, if he's even talking to you, if if if a dish gets washed, like that's great. So Mindy, how about you? And you know, by the way, we are going to this is sort of the getting to know you episode, but we are gonna end this episode with answering the question, what do we wish we'd known when it started? Because on Facebook, a lot of people ask me to ask that. And then we're each going to end with a positive message. So we are gonna get some tips out of this, but as we go further into other episodes, there'll be a lot more tips of of what helped us. So yeah, Mindy, talk about Jim.

SPEAKER_01 23:55

Well, I think Jim maybe was a little different than your two sons when he was young, because um, he always had social anxiety, even as a little boy, when he went to birthday parties. Once he had to come home because there were too many kids and too much noise. And he always liked one friend at a time. He had several friends, but he didn't even want to see two of them at one time. He had that quirk and he was using drugs. So, like Mimi said, we just thought this is normal teenage behavior. But when he was finally diagnosed when he was um was 21, we were shocked. You know, my grandmother had schizophrenia. I write about her in the book, um, but he didn't look at all in his presentation how she did. Of course, she didn't ever use drugs. And being a woman, she got her illness later. Um, but once Jim was diagnosed and he we had a couple of rocky years when he didn't want to take his meds, he got stable and he was like a superstar, maybe more so than he'd ever been all his life. He's very smart, but he never did well in terms of grades at school because he never could concentrate and do well, but he did really well on tests. He managed to be a good test taker. But um, once he was stable in his schizophrenia and he was on lozopine meme, so that is a miracle drug. He was working full-time, he was working 40 hours a week. He started out in a program where he was driving around other people with mental illness back and forth from work, and he drove a van. He lived in a what they called a lodge, if anyone's familiar with the Fairweather Lodge program nationally, and we have a different name for it in Minnesota. But it means that several people, four to eight, who have a mental illness, live together. Everyone works at least halftime, many work full-time. So he wasn't on any public benefit. He was paying his rent there. He had built-in friends that he was comfortable with, and then he got allergic to the uh clozapine and got a grandulocytosis, they call it. And there's so many big words with any disease. And then he just never did quite as well. But he did go to school, he was majoring in accounting. I had a call from the teacher who I actually knew, who said he thought he was possibly the best accounting student he had ever had. Jim was reading all his class, his assignments three times, and he aced all the tests. So, you know, in those early, you know, five to eight years of his illness, he showed us what a person with severe schizophrenia, and we thought he was going to harm us when he was first ill and not on meds and taking drugs, to being this really exemplary person that could be, he was the first story that NAMI, Minnesota used for legislators to show what success could look like. But then he got allergic to the drug and he met a woman and got into using crack cocaine and he got kicked out of his program. And then we had the second 10 years of his illness when he wasn't working full time, he wasn't going to school, and he was getting into episode after episode. So we we were at the heights and then we got to the depths, and now today our son is stable, he's broken up with that girlfriend, he's been sober for over a year, and he's working just a very limited number of hours, isn't taking any classes, can't focus on reading. But after what the hell we've been through for the last six to eight years, we're we'll we'll take it. It's not what it was, but um to have him be loving and kind and polite, he has his own apartment in Minneapolis. We live in a suburb north of St. Paul, but he's at our house because of COVID most of the time because he's lonesome there by himself, and more of his friends are on our side of the river. So it's not perfect, but it's not, we're not in crisis right now. We just hope that it stays that way. We know it doesn't always.

SPEAKER_00 28:14

Awesome. Thank you. So if anyone is listening who's in the earlier stages, maybe we sound a little too experienced. I don't know, but believe me, we've been where you are. I was just where you are August 29th when my son had his first breakdown in years. So we will be talking about many of these things and the system and feelings and recovery. And it sounds like in all our stories with the ups and downs of our son's recovery so far. And I use that word in the kind of the AA way, which is recovery as a process, not like, oh, I recovered from my cold and I'm fine. So it's a recovery process and stabilization, whatever you want to call it. So if you are dealing right now with the beginning of this process, a lot of people have asked me to ask you guys, to ask all of us, what do we wish we had known in the earlier stages? Is there anything that would have helped us more at the beginning? I mean, I remember praying for him to get sicker so they would take him in the hospital. He was so close to being hospitalized, but they would never take him because I know you dealt with this, Mindy, on a legislative level. He was not, you know, a proven harm to himself or others, imminent harm to himself or others. And I live in Connecticut, by the way, so your law didn't help me, but it helped a lot of people in Minnesota. We're West Coast, East Coast, middle of America here. So I wish that I had known about schizophrenia sooner. I wish that my son's teachers and guidance counselors and let's be frank, therapists understood the early gradual onset symptoms of schizophrenia. Nobody said to me, and who would want to, and would I have believed them? I don't know. Nobody said to me, you may have the beginnings of a serious mental illness here. And I would have hated it, I would have hated them, I probably would have fired them, but I might have read about it. And I might have, when my son was under 18 and I had the right to start medication early, I might have done that. So that's something I wish I knew. I wish schizophrenia were more the information was more readily available. And like you wrote in your wonderful blog post, Mimi, for Pete Early. I wish it was a cure. That would be nice. But yeah, that's what I wish. I wish I'd known earlier what it was, that there was a possibility of it, and maybe we could have done some early detection. Anything else you wish you'd known earlier, either? I wish I'd known that.

SPEAKER_01 31:03

And what I also wish then, I won't say the same one you did, I wish I would have known that doctors and the whole mental health system, especially today, it was true when Jim got sick, but even more today, they pay more attention to the person who's suffering early on with mental illness at the beginning than they ever will again. So they pay more attention to the family. So if you are starting out, don't waste your time just being maudeling about your family member having schizophrenia. Get in there right away and take advantage of the fact that you're in the most teachable moment, you're in the sweet spot, and have higher aspirations for your family member than the mental health system does. Make sure they get on a good med. If they aren't doing well, try something else. Ask how they can be in a program where they could work, make sure they have housing, all those things. Try to get something in place when you're starting out because that's when you have the most power as a family.

SPEAKER_00 32:18

Thank you. Mimi, anything to add?

SPEAKER_02 32:20

Yeah, you know, again, what I wish I had known was pretty much everything. You know, I spent I spent the first 15, 20 years of my mothering career obsessing about car accidents, childhood cancer, and child abductions. And none of, well, we did get some cancer, but that's another story. But none of that happened, and out of left field comes serious mental illness, comes schizophrenia. And again, like you've both said, early intervention, early treatment is so important. And letting those early years slide by when they're 16, 17, 18, when you still have control, you still, like I say, you still have the pink slip on their body. Those are the years, those are the years to grab. And I think that that's why it's so important that we're doing what we're doing. Because, like we said, schizophrenia is the bastard child of mental illness. People don't pay attention to it, they don't want to talk about it, they're afraid of it, and we need to talk about it because it needs to be looked at and faced. It needs money for research and beds and all these things that we'll get into as these go on. But I would say for anybody, the two pieces of advice I would give is first of all, just start reading, and there's so much more out there now. You know, there's all these Facebook support groups and things like that. I mean, we were all so alone when this started. So get yourself a community and learn as much as you can learn because you know, um, knowledge is power, and knowledge is what's gonna save your kid, you know, beating your breast or lying on the bathroom floor and crying with the shower running, which was my trick. It didn't help my son. It was okay, it got me through things, but knowledge is what's gonna help you save your kid.

SPEAKER_00 34:14

Yeah, thank you. So believe it or not, we're nearing the end of our time. So we've kind of each given a message, but think of another message that you would like to leave people with. And next time, I think we're gonna be doing these twice a month. We'll figure it out, but that's the plan right now. The next episode is gonna be really focused on sharing what has helped us through the process the beginning, middle, and the end, tips through the trenches of schizophrenia or whatever, whatever we decide to call it. I just want to share that humor can still be possible. And humor usually comes with acceptance of some sort. I was at my daughter's house the other day, and she has three children. She had three kids in two and a half years. So that's been a great distraction. And they're still all under, they're not even in kindergarten yet. And we were sitting around, and and she said she was asking for something, you know, will we pay for dinner or whatever? I don't remember, and she goes, Mom, please, I'm your only child that's not in a facility right now. And you know, the and we just burst out laughing. The fact that we could get to the point where it's look, it's not funny to have a sick kid, it's never funny, but you know, sometimes you got to find that black humor.

SPEAKER_02 35:29

The gala's humor is what saves you.

SPEAKER_00 35:32

It it does. And and so that's one thing. If if I would leave with one message, it would be the phrase that I go over and over again in my head, it is what it is. You know, I could if I could wish it away, I would. But I would just say, when you get a good moment or a good period, make sure you savor it. Savor every good moment. When my son was with us and when he was doing well, and some days were better than others, depending on how successfully he tried to spit his meds out. When we had a good day, I just took a moment and said, appreciate the day. Yep. This has been a good 24 hours because that really helps, but lower the expectations. My son may never get married or have kids, and that has to be okay. It has to be okay. So that would be mine, you know, savor every good moment and lower expectations. Mindy.

SPEAKER_01 36:25

Well, of course, you could probably guess my one thing that I will say at the end here, and that is um, I it's just so important always to advocate, you know, for other illnesses. We're all used to going to talk to the doctor and they help us, and other people that have had the same illness come out of the woodwork and they help. And this is such a much more lonely illness. As Mimi said, you know, people are not talking to each other as much. I was a little bit insulated from that problem because I was in the legislature, and I am not a person who suffers in silence. So I early on talked about our son and publicly, and then I got all the very people-oriented people at the legislature, the staff, the lobbyists who you know want to pander to elected officials, you know, would bring in helpful things or tell me things. So I had a really accelerated chance to be educated. But the idea that you have to advocate was was foreign to me because I hadn't had to do that for other other illnesses when other family members were sick. You had you learned what to do, but everyone helped you and they wanted you to help when they when the person went home so you could be helpful. The idea that that I was, you know, sometimes shut out or that they had suspicions about me, the mother, and was I too aggressive or too something, you know, I just that just shocked me. The fact that the police had to be involved to get our son to the hospital the first time. That shocked me. All these things are just, I'm just kind of like, I don't believe this, I don't believe this, I don't believe this. So, but my advice then, though, is once you're educated, you have to advocate for your person in the mental health system. Nothing comes cheap if you're trying to get help. And then we all have to advocate um to make the mental health system better. And the more nobody wants to talk about it, the more people come forward and they talk about their depression, they talk about feeling um anxious during COVID, or even celebrities are coming forward with bipolar disorder now, which is you know another very serious illness. But I would like us to try to name five people who come forward and are high-profile people that have schizophrenia. Can't do it. Illness that if you don't advocate, nothing's going to change. And it's the illness that most needs to have the system change so we can have our needs met.

SPEAKER_00 39:07

Okay, thank you. Mimi, you get the last word.

SPEAKER_02 39:11

Well, I'll piggyback off of yours a little bit, Randy, because um the laughing and the gallows humor and everything is, I mean, that's what saved our family. And you know, I I raise a lot of eyebrows with the things that I joke about, but I don't care. I figure we've earned this. Extrapolating out from also what you were saying, Randy, about like it is what it is and appreciating and enjoying those moments, those are things that are taught in whole belief structures, you know, like yogic thought and the sutras from yoga and people who meditate and all that of being in the moment and be here now and appreciate what you have. You know, it's all these things that everybody's talking about in the zeitgeist. And we're kind of lucky because we've been forced into this situation where we have to live that way, full catastrophe living, and we have to like appreciate those moments when we have them, and that's a great life skill to have. And my family jokes around because they call me the Irma Bomback of schizophrenia, because I'm always making jokes about it. But my message to people, and believe me, for years I thought I'd never be happy again, and I thought my life was just over, and we'll talk more about these things later, because I would really like to talk about that shift. But my message is it's not the end of joy. Joy is still possible, you know. I'm 15 or more years into this now, almost 20 years into it. And I mean, I have four adult children, I have a good, rich life, I'm happy and I have a good time. I have, you know, the black dog comes in and rips it up every once in a while. But all in all, I've got a good life, and Nick has a decent quality of life too. And so it's just joy isn't over. Don't think it's over. I mean, uh, we'll talk more about it, and I think that that a lot of grasping onto that has to do with making a decision. But your life isn't over, it's just a horrible adjustment you didn't think you were gonna have to make. But there's life after this as well.

SPEAKER_00 41:20

Thank you. So I I've made a note that one of our episodes will be titled The Shift Back to Joy. And we'll definitely talk about that. So, uh, how can you get in touch with us? Mimi's website is MiriamHeifenfeldman.com. Is that right? Yeah. And Mindy Gryling, G-R-E-I-L-I-N-G dot com, and I'm randyk.com, or my we all have websites for our books. So it's been behind his voices, it's fix what you can, and it's he can in with it. And we are Schizophrenia Three Moms in the Trenches. Please subscribe on YouTube or share the podcast. And we are going to have a website up very soon for the podcast. Maybe you can write to us there. But in the meantime, you can write to any of us via our websites. And thank you so much for joining us today. We'll see you next time for the next episode sharing what has helped us. Tips through the trenches. 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 Miriamfeldman dot com, mindygryling dot com, or randyk.com.