What Schizophrenia Steals - Emotions Deeper in the Trenches (Ep. 17)

A “Just Us 3 Moms, Digging Deeper” Episode.

Tonight we just talk about our boys - and what we’ve lost, what they have lost.

Feeling even more alone than ever? Not only is your family member diagnosed with schizophrenia, but you have your own reactions and emotions to deal with - what is “normal”? What do other families feel? What are the stages of these reactions? What can be done?  

We Three Moms have been there...are there...and we open up to share the raw truth with you. This podcast strives to explore issues, open minds, offer solutions...but we also promise to tell our truths.  This is one of those episodes.

We touch on:

Anger, Grief, Helplessness, Fear, Guilt Resentment, Exhaustion - all normal feelings 

What Siblings Lose

Family events - Changes in Routine (like travel) - possible with schizophrenia? 

Grief - and how the process can differ (and repeat) with Schizophrenia in a loved one

The land of “What might have been…” sorrow - what have we lost? 

The Burden Families Feel

When the Life Behind the eyes is gone

Bravery of our sons - They Try so Hard

Parental Fantasies, Expectations - and the Truth

Vulnerability of Loving

Getting Back to Joy in Real Life: Gratitude, Art, Advocacy, Feel but Don’t Wallow, Reality

Quotes:

“I see this damage to all my children - and that’s the thing I think that’s most painful” - Mimi

“There’s no life behind his eyes. What happened?” - Randye’s daughter

“You can’t reason with mental illness.” - NAMI saying

“What makes schizophrenia especially cruel is: it’s just such a shock” - Mindy

“In a sense, you have to let go of the idea of a future, and that is a particularly excruciating thing to have to do” - Mimi

“If you’re lost in crisis...get support, get education...reach out...don’t hide in the closet. You’re not alone.” - Randye 

Links:

Randye and Ali on More than My Diagnosis.com

https://www.otsukapatiented.com/mental-health/community-stories

Miriam Feldman Facebook “analogue Life”

https://www.facebook.com/miriamfeldmanwriter/

Miriam and Nick on ABC News:

https://abcnews.go.com/US/mom-struggled-accept-sons-schizophrenia-talks-crisis-services/story?id=77349357

Mindy’s Talk for Mental Health Association of San Mateo County:

https://www.youtube.com/watch?v=y3WrpHWFlF0

Randye’s talk for Mental Health Association of San Mateo County:

https://www.youtube.com/watch?v=qFirkQBdQZk

    Who are the 3 moms?

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

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_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. So tonight we are. This is a really casual night. And although Miriam and I were really wearing ratty sweatshirts and we changed them a little bit.

SPEAKER_01 0:26

But I put on a ratty sweatshirt.

SPEAKER_00 0:29

You look great. When I'm say ratty, I mean like just like goodwill wouldn't take it. So it's my favorite. And I tried to fix it and it didn't. But we thought that tonight we we would just hang out. I wrote one and just dig a little deeper because we've had so many amazing comments about this podcast. And I get the feeling from some people that they think we have all the answers, only because we've lived in this world for so long with our sons, about two decades for each of us since the beginning of the trouble. And we've all gone through NAMI family to family, and we did an episode on it. If you don't know what it is, we encourage you to watch it, listen to it. But one of the things that really, really struck me when I started getting involved with educating myself about schizophrenia is the what they call the predictable emotional responses chart. It's like up on the wall in every NAM NAMI meeting, and that there are actual stages that we go through of reactions to a loved one having a mental illness. And I remember sitting there going, yep, I'm there. And then a few years later, I'm like, oh, now I'm there. And oh, I've jumped back to there. So we've all been through the ringer. If you read any of our books, you'll know, you'll hear what we went through in the beginning stages of what I just call chaos. I mean, the subtitle of my book is is um A Family's Journey from Chaos to Hope in Schizophrenia. But we go back to chaos every so often, as you guys well know. So I thought tonight we'd we'd just talk about our boys and and kind of go there. I'm already gonna cry. Um we've all really worked really hard, as is evident from hearing any of us speak and reading our books, to accept where our sons are, to find joy in our lives, to my favorite, it is what it is. You know, we've we've we've gotten there to an extent, but every once in a while, I don't know about you, I just grieve so hard because of not only because of what we lost, but because of what the world lost when my son became ill. And I don't go there, woulda, shoulda, coulda, might have been very often. I don't go seeking that feeling, but every once in a while that feeling seeks me, and I just have to process it and and move on. So I want to find out where we each are this week. Because Mindy, I know you had a big speaking engagement today, did you not?

SPEAKER_01 3:37

I did, I did. It was um California. That's the one good thing about COVID, which now is ending, but maybe we'll keep it up for things like this, because I got to be be in California and it was a virtually virtually at the Mental Health Association, San Mateo, if I'm pronouncing that right, um uh county. And it was just a wonderful group of people, all people who care about mental illness and a lot of um family members like us who are looking for answers, and they had people with mental illness in the in the group. It was just a marvelous group. I really felt uplifted by being there. And the moderator um is incredible. Um, she's uh Angie Koiro, who's I call her the Oprah of California because she's just a really good um interviewer who brought out lots of things that I don't think any other interviewer had asked me or dug that deep.

SPEAKER_00 4:40

Yeah, I they actually had me on about six weeks ago and I had the same experience. So, you know, just FYI. I think anybody can watch that once they get a posted on their website. And their website is M H A S M C Mental Health Association of San Mateo County.org. And uh you can you can go there. So I'm I'm really glad that went well. And and Mimi and I were just talking, she's taking a big family trip tomorrow.

SPEAKER_02 5:09

Yeah, um, I'm excited and nervous. Nick and I are gonna get on a plane and go to Virginia and visit Rose and her husband. Rose is Nick's youngest sister for a few days, and then Rose is gonna come with us, and we're gonna go to Nashville and spend some time with Lucy, his middle sister. And you know, Nick really hasn't gone anywhere in years and years and years, aside from his trip moving from LA up to here, and he hasn't seen uh Rose in four years, and he hasn't um all three of them haven't been together in longer than that. So I'm really excited, but I'm also nervous. You know, I have to go on airplanes and spend the night with him and deal with it, and I don't know how it's gonna go.

SPEAKER_01 6:01

We'll see. And how that how the your kids get along. I think that's what would make me the most nervous of all.

SPEAKER_02 6:07

That's I'm lucky, I'm really lucky. Uh these girls adore him. I mean, that's the nice thing, is once we're with him, I'm not even worried because not only do they adore him, but they're the best wranglers. They know how to deal with him. I'll actually be able to relax a little bit. It's the travel I worry about.

SPEAKER_01 6:26

Wow. Well, that's to me, that's secondary because I'm with my kids in that respect. Yeah. Is is your is uh Nick the oldest?

SPEAKER_02 6:37

No, he is, he's kind of in the middle. He has an older sister and then the two younger sisters. Okay, interesting.

SPEAKER_00 6:43

Yeah, you know, it's always there's even where we are, having accepted and finding our advocacy and all that, there's always wild cards. You know, there's always like I I was telling Mimi before you got on, Mindy, that uh I took Ben to England because he has a half brother and half sister over there, and and then my daughter married someone from Great Britain. So, like, if we could commute over the ocean, it would be great. We have family over there, and you know, on the one hand, you want to include them in family things as much as you can. And on the other hand, it's hard. What if? You know, what do you do on a red eye? When do we give him his meds? What if he doesn't cope well? And I will tell you, everybody's situation is different. It did really, he did well. And we spoke to the psychiatrist about how to administer the medication. And I'm glad he went because we had that memory together. And we've lost so many opportunities for memories, things that Ben missed because he was in the hospital or he was psychotic, or people were afraid to be around him. And anytime we can make a family memory together, it's it's golden, even if it's flawed. And I suspect it will be flawed a little bit, but what isn't when it comes to family? So, you know, good on you guys for taking the risk. And I hope you get to see all three of your chickens together.

SPEAKER_02 8:14

And yeah, I'm sure it'll work out. You know, I was um I was thinking about this podcast, and and you know, what you were saying about grief. And you know, the thing is, I don't believe that grief is something that you process and deal with and move on. Grief, this kind of grief, the grief of the loss of a loved one, you know, you carry this with you the rest of your life. And the most, most of the time, if we're lucky and if we've worked hard, it sort of sits at the sidelines and we're okay. But it has to be reprocessed repeatedly through a lifetime. I mean, there are moments where I'm back to, you know, ground zero with this. And when that happens, you know, it's like you said, you don't look for it, but I feel like sometimes it just taps me on the shoulder and says, I'm here. And then you have to feel it. You can't not feel it, and it doesn't it doesn't get less, I don't think. Yeah, and I have a lot of joy in my life, but that grief does not uh reduce in any way for me, and it doesn't for me either.

SPEAKER_01 9:30

And some of the times when, you know, for to begin with, when Jim was first sick, going to weddings or college graduations really was a trigger for me. And now I'm a little bit past that because the people that are getting married or graduating aren't his peers anymore, you know, they're people much younger, so it isn't quite the same gut punch as it was when it was his best friend from junior high or something getting married. And Jim wasn't even invited to the wedding or something, but um but now it's achievements in life. I was invited to speak at a symposium for a university here in Minnesota about my book, and they invited Jim to come along too. And the doctor who was moderating the program and who invited us and who did a really good job of coordinating activities on the campus graduated from high school with Jim. And um, here she is, Dr. Lucre. And um on Facebook I saw lots of friends, you know, coordinating and communicating. And I see, you know, all the call them kids, but adults that are Jim's age and what they're doing. And um, and it just seems like Jim is kind of stuck in, I'm not sure, sometimes it feels like high school, and sometimes it feels like he's you know 21 or something, which is what he was when he was diagnosed. But he isn't progressing in life like all his peers. And that, whenever I encounter that, which I don't very often, thank goodness, especially now, but when I do, I just I do. It's just like Mimi said, it's just a big, huge lump in my throat and my stomach, and it does not go away.

SPEAKER_02 11:34

It does. And then you know, sometimes I'll do a thing like when I'm being a real masochist, and I'll go on the internet and I'll start Googling after a glass of wine or something and start Googling Nick's friends and seeing their families and their wives and their beautiful children. And it's like, I don't know why I torture myself like that. I I don't know. I don't know what it is. It's just somehow, maybe it I have to reinforce in my brain that this is what it is, but it um it's a hard road to walk as a mom, I think.

SPEAKER_00 12:10

Yeah, and you know, there's two two very emotional things I remember from family to family when I took it and when I teach it. And there's toward the end of the now eight weeks, there's a class where we talk about the burden, objective and subjective on the family. Uh and we've talked about this on our podcast before. What's gonna happen when we die? Why are we sending money to them still and they're 40 years old? Uh, you know, we never have children thinking, oh goody, they'll be dependent for the rest of their lives. You know, we have children expecting a certain timetable or hoping for, can't really expect, but you know, you you hope for a certain timetable of recovery. You expect it. Yeah, you know, I figure, oh, it's an 18-year contract, and after that, they'll take care of us. Like I was out at 18. Now we, you know, we all know parenting is forever, but the contract with someone with schizophrenia is especially hard because they want you, they don't want you. And so we I think we've touched a bit on the burdens in our weekly updates and the moments of fear that we have. As you well know, my son, after nine years of I would say back 65%. And I kept saying, I'll take it, it's fine, I'll take it, it's fine. Then he went back in the hospital after COVID and a breakdown for five and a half months, and he's on a different medication. And we saw him for his birthday, and he's better than he was in the hospital. Yay! But he's not even 65% anymore, he's more like 40%. And my burden, I hate to use that word, but my my issue right now is patience. And I don't know if there's any way I can convince him to go back on the medication that worked better for him. I don't think there is, or and I would say, I don't know if there's a way that I can finagle it, that I can kind of plant seeds here and there. And I think what may have to happen is he wants to go back to work. We still he has to get social security, but he'd like to work. But I there's no life behind his eyes anymore. What happened? I'm not saying closeral is the only medication, but for in all of our cases, it happens to be the one that helps our sons the most. And when he was on it, I could see joy sparking through on occasion. And he certainly made it spark through when he waited on tables. He loved it. I don't see any life behind his eyes anymore. And he tries so hard, he really does. And that's that's what breaks my heart because we saw him for his birthday. His nephews and his nieces and nephew were there, and he was very warm to them. But before this recent breakdown, we didn't worry if they wanted to go play on the playground with Uncle Ben. Now my daughter's like, I think I'll go there too. Like the kids love him so much, but his eyes are dead. I don't know how else to describe it. And he tries so hard. We went shopping for his birthday, and and I even got him to laugh twice. And I even got brave and asked him to talk about the symptoms that he said he's was wrestling with, and he refused to talk about them. So we're kind of back to square one. So there's, you know, there's the current burdens. But here's where it people who are just at the beginning of this journey to even get where we are is is hard. And what I'd like to know from each of you is what has the world lost? We know what our sons have lost, and we know what we've lost. But like my son was an amazing writer and uh a warm and loving and giving big brother. He was like the best babysitter. He his phone rang off the hook with girls asking him for advice. He was popular, he had friends, he had 146 IQ, and this is standard. And I think every once in a while, as when I really want to be a masochist, is I love the way, you know, and there's no point except occasionally I just go there and then I go to the land of what might have been, and then I know it's time to leave. But what might have been my daughter having a niece and nephew of her own, um, my kids having kids that play together, like all those hopes and dreams. And parenting is all about hopes and dreams getting dashed. They can be little ones, like, oh, like my granddaughter who loves to sing. I thought, oh, that's my legacy. She's gonna be my theater granddaughter. And then an opportunity came up this week to be in a show, and she's like, No, I don't want to do that. And I'm like, oh, a dream dashed, you know, silly little, you know, things like that. They're not interested in what you're interested in. So all parents is parenting is humbling no matter what. But when you have a kid with schizophrenia, every once in a while I think, wow. He got it.

SPEAKER_02 17:34

Oh, because if they haven't, it's not that they've chosen something different, right? It's that they're not having a life.

SPEAKER_00 17:41

Right. They're not having the life that in a fair world, which we know it isn't, they would have been entitled to have. And the world has lost, in case of my son, a marvelous poet, an amazing father. So, what were your sons like? And what I know from your books, you know, because I read your books and I I got to meet your sons, Nick Boy, you know, I mean, before before, but when you go to that land of what might have been, what what is that like for you?

SPEAKER_01 18:14

I don't really know because um Jim was getting sick from the time he was in junior high. So I did not get to see what he was going to be. He was already underachieving in school. He's very bright. One thing we found out when he was being tested by a psychologist when he was in one of his colleges was that he also has a very, very high IQ in the 140s, but for all the good it does him. But he was interested in computers. He could bring home any game, and on the way home, video games, he would read the directions, throw them away, and then he would have them in his head, you know, all the time when he was young. He was anything we got a computer, he would just set it all up and bing, bing, bing, everything was done. And that was what he his first major was then after he got done with environmental studies, which he didn't keep for a while for very long, but he was going to work with computers, he was going to program computers, math is his thing. That's as close as we got to see what he might do. But what is sad now is he can't set up a computer. He has, if he has questions about some of the things he needs to do on the computer to fill out all his paperwork to get his benefits, he has to ask me for help. And I'm no computer genius. I can tell you that. But it's really sad for him and for me. And he even says, um, if I hadn't gotten sick, I would be able to help you with your questions, or I would be able to do this. It would be nothing for me. And now it's hard for me. So, you know, I think sometimes it's even sadder when he knows, you know, what he's lost. And sometimes when he's not doing well, he's off in another world. And that sometimes isn't as sad as when he's doing well enough to know what he's lost. But for me, what I think the main thing our family has lost is the I'm gonna take a glass of wine. I think the main thing our family has lost is what what you two were mentioning, and that is um family, a family. I mean, to be denied children and a spouse and interacting with your sibling as an uncle, you know, that is what I think is is the saddest of all. And it's sad for our siblings for the siblings too, because you know, Angela, the last time Jim was able to go in together with a gift for for Roger and me, it was um they went to, she picked out a trip on a train, a little, you know, 30-mile round trip train, and they had 40s music and the bugle boys and all of that, and a lace or linen tablecloth dinner. And um, she had Jim contribute, you know, 10 or 15 dollars, and then she paid the rest. And she that was the last time she ever tried to do that because it was too humiliating for him to only have that much to contribute, and too sad for her to, you know. I mean, I think she feels the loss of having a brother, perhaps more even than we do. She's not as as good at at having smoothing things out, it sounds like, as your children, uh Mimi. And how about your dog?

SPEAKER_02 21:42

Well, I'll I'll address that when it's my turn. It's not go for it.

SPEAKER_00 21:47

Go for it. It's your turn. I mean, I just keep thinking of the art that I've seen that Nick creates and and he's still at it.

SPEAKER_02 21:54

And it's just yeah, but I mean, you know, I I went through it, you know, sitting and watching him draw and Ninja Turtle coloring books after he was doing art. I mean, Nick was going to be an important artist. I know this, and you know, I it's not some sort of mother's delusion. I mean, I have four kids, I don't think all of them were going to be important artists, but Nick had something. But you want to know the truth. The thing for me that is the most painful isn't, oh, the world lost a great artist. I mean, or the world lost a great guy, because it's true, but I mean, there's lots of great guys and there's lots of great artists. The thing for me, it's more personal. I mean, the hardest thing for me is that he's probably never going to have a wife, never going to be a father, never going to have that fullness of life. And that's what kills me. I um I think about um, you know, my husband teases me because it's like every time Nick gets a new caregiver, I've got in my mind, she's the one. She's gonna fall in love with him, and they'll get married. And she's a caregiver, so it's perfect, and she'll take it. And then for a long time I decided that the perfect spouse for Nick would be somebody with Down syndrome, because they're open and they have these big hearts and they're loving and accepting and full of goodness. And I thought, there, that's and it's like I was even looking into a Down syndrome place where I thought, I mean, just really magical thinking.

SPEAKER_00 23:30

But um you know, well, my I'll just break into say that my son for a while, he he liked to help, he likes to help other people. So we had a roommate, he had a roommate in our house in our basement because the kids' parents were homeless. It was a whole thing. And and for a year it was great because Ben had like a friend in the house and he'd come home and go, yo, bro, and it was so great. And I used to go, oh man, I just wish he was gay. Then he would have through the whole two.

SPEAKER_01 24:03

I have no compassion for those families that are in mourning because they have a gay or lesbian. Oh my god, give me a give it, give it up.

SPEAKER_02 24:11

Just we don't want to hear it. Right. Yeah, exactly. I mean, seriously, it it's just it's not even worth discussing. But the thing that um I with my family, with my daughters, is what you were saying, Mindy, it's true to a great degree for our family, too. Our family's very split up, you know, even though his sisters adore him and embrace him, you know, there there has to be something to be noticed by the fact that everybody's at a different end of the country. That didn't happen by accident. And, you know, it's been hard on my marriage. It's been hard, we don't have that big close family. That was the thing that I always dreamt of. And um the thing that I think is important to note and is important for other moms to know that we have this too, and that we we see them is this is where I start crying, but I know the damage, the damage that it did to the girls, you know, the pain and the suffering, and I can still see it, you know, now and you know, they're old and they're doing well, they're in good relationship, they have good lives, but it killed something in them. And so it's beyond just Nick. I see this damage to all my children, and that's the thing I think that's most painful. Yeah, here we go.

SPEAKER_01 25:38

Someone else Okay, well, I'm a sympathetic crier, so now you're gonna set me off to. But I mean, that does, I think that's right. And my daughter is um, you know, I think we should have our kids on, our sip the siblings on this show sometime, and I hope we have our have our sons on too. But my daughter is an uh, I wouldn't say she's an overachiever, she's always been a high achiever all her life, but now, you know, she's a superstar in and I always wonder if that isn't partly topensate for her brother. Sorry. Yeah, we are in the trenches now.

SPEAKER_02 26:20

I know that she has that, she's expressed it to me where she has said, I always have to be the normal one, I always have to be the one that achieves and fulfills your desires as a parent because I'm compensating. And that's not fair. That you know, that's so hard for them. I know.

SPEAKER_00 26:42

I had um, yeah, I'm I'm sitting here looking at uh I I pulled out of my um family-to-family thing this like predictable emotional responses. And there is in week one, whereas which is very, very introductory, there is a time where we go, all right, now we've told you what to expect, blah, blah, blah. Here's a whiteboard. Tell me one word that describes what it feels like to have someone you love come down with a mental illness. Come down, I don't know if that's the right way, but whatever. Be affected, have, be diagnosed with a mental illness. And that's when the group starts to cohese because I mean anger, grief, helplessness. Do you remember some words from when you took family to family that went on that list?

SPEAKER_01 27:41

I don't even remember the list, but those words sound good. Well, and fear.

SPEAKER_02 27:47

Fear, fear. I mean, I operated in crisis mode for years. Every decision was made out of fear, and you know, I had to reach a point where I don't even know when, somewhere along the way, some years in, where I think maybe a friend said to me, but I got to the point where I had to look at and not make friends with, but at least acknowledge the possibility that he could end up dead. And accept that that this is part of the equation, and that I can't keep making every decision from a place of fear of that. I had to accept that that was a possibility and start making decisions with that as a given. And I mean, yes, of course, every child can and will die eventually, but it's a different thing. It's a different thing when your day-to-day life offers the possibility of death.

SPEAKER_00 28:47

Yeah. And we've all, you know, in our in our books and in our stories, we've come close to that fear many times. Um drug addiction, or in in my son's case, he was wandering homeless in Idaho for five months, but asking me to pay for a therapist. I mean, it was like, and I'm thinking, oh, he'll just hit bottom and he'll come home. This is before I understood. Um he was mugged a couple of times. You know, there's so because the the illness puts them in a state of lack of focus. And every parent faces that fear. You know, I mean, with I always told my my daughter, with love comes fear. It does with love because you're risking something. You're vulnerable when you fall in love. Guilt and guilt and fear are part of love, like especially parenting. Guilt, fear, and love. It all comes together, but it's worth it.

SPEAKER_02 29:46

Well, I always say the day your first child is born, that's the day you will never have another fearless day in your life.

SPEAKER_00 29:55

Yeah, fear will be always there. That's true. And you know, we've all done a lot of work and we live in joy and we live in happiness and we accept, but I think the value of this is, you know, um, I hope you guys are okay with us putting this podcast out because we're we're getting raw and real here. But it's important to know that we've been there and we are there on occasion. And Amindy, you started to ask about my daughter, and I'll just answer that question just kind of to fill in with some of what goes on with me. I have two children and two stepchildren in England who are older, but they're an ocean away. And and I didn't raise them. I love them, but I didn't raise them. So that's another story for another time. My daughter Allie is Ben's younger sister, and Ben didn't get ill till recognizably ill till middle of high school. You know, we thought it was a tough adolescence up till then. But she was 12 or 13, and there was one time when a company came to interview us both to I think it's still on a website called more than mydiagnosis.com or something like that. And they came to the house and they gave us makeup and they it was a whole it was a whole thing, and they wanted to interview her. And while she was being interviewed, I was not in the room, but I was in the director's area watching the interview, and it was the first time I'd gotten to witness my daughter honestly answering questions that I didn't have the guts to ask her, or I did, but she didn't want to talk about it. And they asked her, Do you know, do you ever think about if Ben was healthy? And she said, pretty much what your daughter said, Mimi. I I don't go there. This is all I've known since I'm 12. What's the point? It is what it is. I have to love him the way he is, and I do love him the way it is. I will say I lost a big brother and now I have a little brother. And you know, to her credit, she recognizes that wallowing in grief doesn't have a point, and yet it comes to get her once in a while. Like when we picked him up from the hospital after this five and a half month stay, and she got to see him before he went to the group home because it felt COVID safe for about 10 minutes, and uh she cried. I mean, it's there's no life behind his eyes. What happened? And you know, even before this, even with the illness, there was this hope of, oh my God, he's 65% here. Like an average person would think he's quirky, but hey, he lives with his mother. Oh well, he has a job, he, you know, drives drives a car. So it's little losses that keep happening every time your hopes are dashed. And so, you know, these feelings shock, confusion, denial, anger, guilt, and I'm reading from the list now. Obviously, my eyes are over here. Resentment.

SPEAKER_01 33:07

Resentment, yeah. That's an honest, honest feeling. I think that um all the siblings, if they were honest, would say that. And I think if we were honest, we would say that too at different times.

SPEAKER_02 33:20

Well, you see, yeah, that's what I think that the little forays into you know, everybody's Facebook page or your are about, where it's just like I look at it and it allows me to exercise, to take my resentment for a little walk, so that then I can put it away and continue my joyful life. Because the thing is, it's part of it, and lying to yourself or anybody else about it does not serve your own mental health. You know, I sometimes lie in bed at night and I fantasize, I imagine it married, I imagine what his wife looks like, I imagine the children, I imagine his art career, I think of it, and it's kind of excruciating to do, but it serves some kind of a purpose. It's just allowing all the feelings to be there because if you try and shut them down or ignore them, they're gonna just eat away at you. You're allowed to feel those things. I mean, that's the thing that I would say to the other moms is the goal, the the objective in this is not to eliminate or absolve yourself of all those complicated, difficult, painful feelings. The goal, in my opinion, is to have a life with joy, not in spite of them, but alone with them.

SPEAKER_01 34:45

That I have a lot of that, I have a lot of that joy. You know, if I'm only with Jim, and um, if you've noticed, if you're watching my eyes every now and then, he's walking by right while we're doing this program. And I'm like, go downstairs. But um is he hearing you say all these things? I don't think so. He's pretty oblivious. He's just you know wanting to roll his cigarette, go out on the deck and have a smoke, and then he's back down to watching ballgame with Roger. Um, but um, I'm telling him, go to the garage, quit my hand back and forth. I mean, he's busy. But when uh when he's here, you know, we have a lot of fun, and he's a sweet, sweet man, and um he does have his friends, and I'm so grateful he's working it at least a little bit. Um, so when I can be in my little cocoon when we're with when I'm with him, it's somehow um when we're out and about, and then you have can't re can't get away from making comparisons, um, that's when when it's really hard. And my daughter too lives in Washington, D.C. and I'm here in Minnesota. So we don't see her very often, um, maybe you know, two or three times a year when we don't have COVID. And um, but when she does come, then our house gets busier, and Jim gets he's excited to see her, but eventually gets tense, and you know, everything isn't as mellow, and um, and then he can't help but know how what a superstar she is, and he's proud of her, but it also I think they have less and less to talk about um anymore, and that is I definitely sad for both of them and sad for me.

SPEAKER_00 36:39

You know, there was a there was a time when Ben was I think I I sent him to a troubled teen program when he was 17. It was there, including the homeless period about a year. And it was great for my daughter, she missed him, but the chaos in the house was gone. He was being taken care of by someone else, and it was just at the time I was not married, and and it was just Allie and me. And she got my full attention. And I I'll never regret that I didn't know that Ben had schizophrenia. I just knew that I there was no more I could do for him. I was done. I told him, you know, he had dropped out of high school. He was yelling at me for not supporting his poetry career. And look, I'm an actress, so I was just like, Well, you got to pay some dues, but you know, you isn't poetry poetry career an oxymoron. Yes, absolutely, especially when you can't really understand any of the poetry because it's all psychosis being spilled out on paper. And you know, I remember one of the most powerful things I heard in NAMI was you can't reason with mental illness, like they're not where it doesn't make any sense. And I stopped wasting my energy on that, and it was such a relief to to send him away for a while. And and I missed him, but my daughter and I had some some time together, and I think that really helped us. I think that really helped her to be the center of the family, to to be able to have friends over to the house again. And it's a series of little griefs, griefs that you know, Ben came home, and there's a scene in my book where like I'm waiting for the train because I made him take Amtrak from Idaho to Connecticut so I could have five days to figure out how to bring him back in our lives. And there was another dad waiting for the train because his daughter was coming back from George Washington University in DC, it was American, whatever some university and some Ivy League thing, and our kids had gone to high school together. She was coming back from Ivy League school for break, and my son was, I didn't know what to expect. He gets off and looked like a homeless person, uh, you know. And those wonderful moments, those wonderful moments, and you know, I just my sense of humor gets me through a lot. But you know what? Any parent that has lost a child, and I'm not gonna compare well, I am gonna compare losing a child to mental illness to losing a child because we there are similarities, there are things we lose, there are hopes and dreams that we lose for sure, but we still have hope because they're still here. Like you never know, the next medication, they might do research, they might do, but there are little deaths that we suffer and absorb every day, and then we have to find a way out of it. So if you're just at the beginning of this journey, we you know, we want you to have hope and we want to help, and we want to give you resources, and we want you to go to family to family, but know that anger and guilt and resentment and exhaustion and numbness and denial, despair are all normal. They're all normal, and what gets us through are things in the advocacy stage, which are empathy, acceptance, energy, motivation, determination, and resilience.

SPEAKER_02 40:29

You know, she's each other, don't isolate, reach out, you know. It it can be maybe just friends that you have anyway, other moms or other moms dealing with these kinds of things. But boy, it's that network of women that got me through.

SPEAKER_00 40:47

Yeah, absolutely. And as my you know, there are some wonderful men in that support system as well, but we are three moms in the trenches, so we're talking about the moms right now, and you are not alone. The problem with mental illness is that well, there are many, but that our sons, at least mine, he's not gonna go to Washington and advocate for help like Eric did because he doesn't know he has an illness. So I'm not fighting this fight with my son by my side, going, help us, this illness sucks. Let's have more research. Because he doesn't even want anything to do with it. So we are left alone to fight for our children in the best way we know how. And it's not an easy journey, but love, you know, why do we do what we do? We love our boys. Yeah.

SPEAKER_01 41:43

Yes. And one thing I think that is different about mental illness compared to other people who have children with disabilities that get that are born with them, you know, like most developmental disabilities, or often autism starts, you know, really young. We have two two young people across the street from us who have had autism since they were toddlers. And so those families do all their grieving when the children are very young, and then they have the school experience and lots of help with special ed, and and they they um not that they're any happier, maybe in the end, but they learn to cope. And whereas we to one degree or another saw um children who we thought were going to have a normal life, and we got glimpses of that. I saw Mimi's son absolutely gorgeous in the national TV program when he was a teenager or a young adult and um rocking a baby, and you were thinking of being a grandmother with him. I just think um it's the brutal shock of going from having a pretty normal kid to all of a sudden having a pretty not normal kid that um makes schizophrenia especially cruel or something like bipolar disorder. It's just such a shock.

SPEAKER_02 43:16

They didn't and the thing is you're exactly right, because the thing that is so acutely painful and and strong to me is the fact that you have this kid for 15 years, 17 years, 20 years, and from the moment they're born, you're in love, and you're not only in love with them, you're in love with their future, and you're in love with all your ideas of how it's gonna be, and it's a different adjustment than mothers who have to really oh well, he's not gonna be a lawyer, he's gonna be a uh car repair man. It's a different kind of adjustment. You their future is gone. They're stuck in a place in time, and you have to completely let go of not just what you thought their future was going to be, but in a sense, you have to let go of the idea of a future. And that is a particularly excruciating thing to have to do.

SPEAKER_01 44:18

That's right. And now, you know, the things I'm most happy about are the things that Jim has a life. He's got four friends that he sees regularly. You know, when I look at other people with schizophrenia, often they have no friends or one friend. So I have to celebrate that Jim has four friends and he sees them fairly regularly. I have to celebrate that he's working. He's working Wednesday for two hours and Thursday for two hours. I celebrate that, you know, but what that, if I'd known that was going to be what I was celebrating, you know, when he when I was raising him and when he was in high school, probably not. So I have you know, we have to adjust what we celebrate. Right. Exactly.

SPEAKER_00 45:05

Yeah, I call it the miracle of ordinary. And so I think this is a good time to to to bring it to a close with hopeful things like that. And it's true. It's like when for Ben to be in a group home, I honestly in some ways think he's the bravest person I know because a year ago he was driving Alexis and working full-time. And now he's taking walks and allowing himself $28 a day to spend on cigarettes and coffee. And but he has people to take a walk with. And then focusing on joy as much as I can and reminding myself that Ben's journey is his journey and it's not my fault and it's not his fault. And I hang on to hope and I hope that he has joyful moments. That's what works for me.

SPEAKER_01 47:10

Now for me, I'm also I celebrate that Jim is sober because it's not, it's only been less than two years that he hasn't been um been using. And I celebrate um that we have um we have a lot of fun uh shopping for food and cooking and eating. And every he goes back and forth with being a raw vegan or a vegan or eats everything and we never know what he's going to be there, but we try to have fun with whatever we whatever we do. And then what personally gives me the most joy is um advocacy. So I've always get my solace from doing things. So right now I'm president of our NAMI affiliate, our chat, our county chapter, and um I'm having so much fun working with other families there who care and want to do things, and people with mental illness. And we, whenever anybody has a problem, then you know we can use our letterhead and our power and uh insist upon changes and talk to our county commissioners, and we actually get great results because we have a lot of members in our affiliate, we have a very strong board, and and I know all the county commissioners. So that is that gives me huge, um, huge joy and um always all my life advocacy is whenever I'm down, if I try to do things and change things that make me mad on behalf of my family or others, that is that is the biggest thing that can make me forget and um and feel happy.

SPEAKER_02 48:55

Well, you know, they do say when you're feeling depressed, you're feeling sorry for yourself, the thing to do is go help somebody else. Yeah, it's that simple formula that goes across the board. And I think that it's really true. For me, it's the act of making art, painting, writing, does the things that I've always done my whole life. And there's so much joy and so much good, and so many worthwhile things. I think for me, it's just a matter of allowing myself to feel the feels of the bad stuff, but not wallowing. Don't wallow. Yeah, and don't ignore it and don't deny it, but don't wallow, limit it, and then go to something worthwhile or something joyful. And I mean, I I think, you know, it's a funny thing because I I in spite of everything, I kind of feel like a really lucky person, you know. I I think that a lot of or some really bad things have happened to me or in my life, but they've all kind of been the worst case scenario. I mean, the best case scenario of the worst thing. So that's lucky. And um in spite of everything, I'm never lonely, and my life is filled with love. So, how can that be a bad life? Yeah, that's so that's that's what I have to say.

SPEAKER_00 50:23

That's a that's a great note to end on. And you know, just I'm not sad for me, I'm sad for my son.

SPEAKER_02 50:31

Yeah.

SPEAKER_00 50:32

And and at the moment he doesn't seem sad for himself, but I don't know what he holds inside. But I will say that if you're listening to this or watching this and you're not yet where we are, if you're lost in crisis, like I go on Facebook and I see people who are afraid their husband's gonna pull out a knife. I see people who don't know how to deal with the police. I see people who are uh feel trapped in their own homes. Like there are people in real crisis that they don't yet know how to deal with because it's new and it's raw. So I would just say, in addition to that, get support, get education, go to NAMI, learn what you can, reach out, don't hide in the closet, you're not alone, and you know, keep listening to our podcasts and we can't fix your loved one, but we can all band together and help each other get to a place of joy. So we are three moms in the trenches, and thanks for joining us in our tears and our and our reality in our trenches tonight. And uh see you next time.

SPEAKER_02 51:42

Bye-bye. Bye-bye.

SPEAKER_00 51:45

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