Channeling Grief and Anger into Advocacy and Acceptance - guest Jerri Clark (Ep. 32)

What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?

What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.

What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it - although the refusal itself is a symptom of his illness?

She says: 

 “I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”

Her son Calvin was 23 when he died from suicide March 18, 2019. 

She is the founder of MOMI–Mothers of the Mentally Ill, and talks with us about her family story, and her path to purpose and redefining her life - and Calvin’s life.

Links:

Pete earley’s post:

http://www.peteearley.com/2019/01/14/a-poignant-pbs-segment-jerri-clark-describes-her-familys-struggle-to-get-help-for-son-with-his-mental-illness/

PBS link: (Brief But Spectacular segment on PBS news hour)

https://www.youtube.com/watch?v=1ozj7TvpDHI 

Jerri’s Story:

https://kansasalumnimagazine.org/my-sons-story/

Who Are the 3 Moms?

Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms

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_02 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 Kaye. This is episode 32, and we are so excited. You may notice, if you're on YouTube, that we have four moms in the trenches tonight. And I want to start by just welcoming Jerry Clark, who is our honored guest tonight. Hi, Jerry. Hi, thanks for inviting me. We're so excited to hear your story later and have you as part of this conversation tonight. We are going to be talking about mothers who are ready to help change the way seriously mental ill are treated in this country. And we talk about that all the time. And we just want to meet each other and your fourth mom in the conversation. We have some pretty interesting things to discuss, but let's just start by letting you know who we are. We are Schizophrenia Three Moms in the Trenches. This is episode 32. And I usually give our stats. So we're up to as of when we got on the air tonight, we had 16,999 downloads. So I'm going to call that 17,000 because we needed one more. Um, 216 subscribers on YouTube, small but mighty, and getting there. And um, I want to thank our Facebook page people, because we're over 750 followers now. So people are learning about the podcast, getting good responses. And I want to thank Shannon D, who uh I went on to iTunes to see how we're doing, and we've got a nearly five-star average of our reviews with I had never checked that before. And her review said, Thank you for sharing and teaching helpful information for family and friends of people afflicted with serious brain disorders. She says, we help give perspective and we let her know what some people are thinking and experiencing when they experience their disconnects. Keep up the good work, fellow moms in the trenches. So thank you, Shannon, for that review. And feel free to um rate us five stars, would be awesome on iTunes and on our Facebook page as well. The Facebook page is at schizophrenia, the numeral three moms. But if you go on Facebook and search for Schizophrenia Mom Trenches, you'll find us as well. So, by way of introduction, we're gonna do a 60-second who the heck we are and how we're doing. And we're gonna keep it nice and short. I'm Randy Kay, the author of Ben Behind His Voices, with a shout out to Pete Early today, who was kind enough to do a blog post with brand new books about family experiences with mental illness, and included an update on mine, which is 10 years old. And I really appreciate that, Pete. Thank you so much. My son, who I call Ben in the book, is uh diagnosed with schizophrenia. He is nearly 40 and currently doing all right and uh one day at a time, and we see him every Sunday, and things are stable, as you know, what time is it? But things are stable, and he's working on uh sobriety. So I am very happy with that. And that's uh a little bit about me, Mindy.

SPEAKER_03 3:28

Hi Jerry, I'm Mindy Gryling. I live in Minnesota, and as all of us here, um I my book is um schizophrenia, a mother's a lawmaker's fight for her son. So I fix what you can. Fix what you can. I'm sorry. Yes, I'm mixing up the name of our podcast with my book. I'll fix it up. Fix what you can. I think all uh family members can relate to that about the mental health system. Thank you. I need to be reminded about what the heck is the title of my book. I need an a refresher myself. Um, so our son is 44 and he's been sick since he was 21 with schizoaffective disorder. He also has um uh substance abuse issues right now. He's pretty sober, but uh marijuana is a work in progress. Um, he's working with a new psychiatrist, so he's phasing on to clozepine, and that is a game changer for him, but he's got a long ways to go to get transitioned over and off of other drugs and get all his side effects taken care of. But I'm just um so grateful that that he's making those that progress. He lives with us currently because the doctor, our doctor said it's dangerous for him to be by himself making these med transitions, but he does have an apartment. He works um part-time at at NAMI, Minnesota, entering doing data. So he's doing really pretty well, and uh, we've had a lot of ups and downs. So I really relate to the little bit I know about your story, and I look forward to hearing more.

SPEAKER_02 5:06

And Mimi, you are friends with Jerry, so she probably knows you.

SPEAKER_00 5:09

But Jerry, my story, but for the um people listening, Nick's doing okay, he's kind of plateaued, he's so much better with the clause pine. But we're at this point where he the negative the positive symptoms are really pretty much mitigated, but he's just has no motivation to do anything, and I'm trying to get that spark of life going in him again, and so that's what what we're working on. But I'm incredibly grateful for how well things are going right now. Um, what I'm not incredibly grateful for is the subject we're gonna talk about in the beginning. I I told um YouTube about it and I I mentioned it to Jerry. I um uh when this um Darryl Brooks in Wisconsin, the one who drove his car into the parade and tragically killed so many people and hurt people. When that happened, the minute I saw his face on the television, I looked at that face and I went, I know what this is. And my stomach just sank because it's that same story. And I thought, oh, this guy has got a mom somewhere. And sure enough, a couple weeks later, um his mother published a statement finally. And I'm gonna just read a little bit of the statement and then I'm gonna tell you what I posted, and I'm gonna tell you the thing that's really stuck in my crawl right now. So she talks about how he's not a bad person and he didn't come from a bad family, and they care about him and they've tried everything, but there was no help available. And she says, instead of offering help and resources to combat the problem, a jail cell was given over and over again. When mental illness is not properly treated, the person becomes sicker and sicker. It doesn't go away once the person becomes an adult. We are not making excuses, but we believe that what has happened is because he was not given the help and the resources he needed. Institutions that are equipped and have well-trained staff is what was needed, as well as resources in the communities where people who suffer from mental illness live. Jail is not the answer because they get released back in society sicker than when they were when they entered. We all see what a tragedy that can turn out to be. And then she talks about um how we need to change the system. And I mean, of course, every one of us can 100% relate to her. And um so I was looking at it and I realized that one of the things about this particular face, even though he has, I can see in the eyes, you know, you know those eyes, you know, this was a black face, a brown face with dreadlocks. And um I looked at it and I thought, in a way that feels kind of far away from my world. I mean, we're all pretty privileged middle class or white people, but it's a big part of our world and the world of mental illness, and it's a part that I mean, if if we've we have a bad act, we have bad access to treatment, it's even worse for people of color. And I thought, I've got to stand with this mother. So I put a Facebook post up and I reposted her picture, her the picture of him and her letter. And I wrote, this mother, it could be me. The minute I saw this event on the news, I knew it. The minute I saw the photo of Daryl Brooks, I knew it again. Please read this mother's words and realize you could be reading my name at the bottom, someone you know, someone like you. Maybe that familiarity will make a difference. Work for change, fight for medical parity, mental illness is a medical issue. We know how to fix this. Fight with me, please be brave and share this. I am Daryl Brooks' mother. And I thought, okay, I'll shake him up. Now, when I um post pictures of my trip to Costa Rica, I get hundreds of likes. When I post pictures of how Nick's doing good or bad, I get hundreds of supportive responses. I got five responses, five likes.

SPEAKER_02 9:38

And I was one, and I'm guessing Mindy was one.

SPEAKER_00 9:41

So and I thought to myself, damn it, this is the thing. Nobody, yeah, you know, it's this is the thing that we need to change. And I mean, I'm not gonna go any further than that. I'd like to know what your reaction is to this. Uh why don't we start with us? And then I want to throw it to Jerry. So maybe.

SPEAKER_02 10:05

And then, and then of course, if for for our listeners who don't know Jerry, we want to hear your response, but I think we need to hear your story as well. And I know you've been on a PBS special, and you know, when I Google, you said, like you said, you're very Googleable. I've seen lots of articles, so I I know you've got quite a story to tell. Um I saw that, Mimi, and I was I live a stone's throw from Sandy Hook from Newtown, Connecticut, where another person who was also somebody's son ended up murdering first graders. And I he did not have schizophrenia, but he certainly did have issues. And one of the first things I wanted to do was who's his mom? Oh, she died. So I mean, he killed her as well. So it's it's terrifying, but we all want to know how could this happen, because we want to know could this happen to us? And but I also want to know what that mom went through. Like, what did she go through? What was she thinking? And when but I also remember Dylan Klebold, is that his name? The one in Colorado. Like his mom wrote an article, and I read that and thought, you did everything you could. Like, we you just don't know, you know, a son or a daughter or anybody with a serious mental illness where the system fails them, and the family has failed because they have a lack of education, and I don't mean education in general, I just mean it's not readily available education about the illness and what to do about it, and a lack of support for the family, then you have a recipe for disaster. And we've all been at our wit's end. And Jerry, we're gonna hear your story in a second, not knowing what to do. I felt for this mother, her name is Dawn, Dawn Brooks. If you're hearing this, we hear you. We hear you. Um, I I can't even imagine how awful it must be for the family, as well as obviously the victims and the family of the victims. But the system did fail this person. This didn't have to happen. That was what I thought. And I'm appalled that what more attention wasn't paid to what I thought was a beautiful, heartfelt post on your part. Well, you know what it is, it's because this is a person of color, and most of the people following us are probably like us, and it doesn't resonate, and that's a big deal, and we need to be fighting extra hard for those families because I I agree, and we're gonna be doing a show on that, not that it fixes it, but I also think this is a person who killed people, and I think the lack of empathy is also about that.

SPEAKER_03 13:04

Yeah, you're correct, and I would say, and of course, the mental health system is harder to access for people of color, BIPOC people, people of color, black, indigenous people of color. Um, and I live in Minnesota where we killed George Floyd. So I'm aware that often when people that need help with serious mental illness, people with our sons and daughters with who have serious mental illnesses, and we end up not getting help because of all the laws that restrict access if the person isn't willing or voluntary, then you often have to call the police. And that's something that if we've discussed on the show before, if we were people of color, we would wait even longer than we already do to call the police because people with serious mental illness often get killed by the police in crises if they have a weapon or are violent, and the police have, you know, they want to go home at night and the person is in danger. But if you're a person of color and you call the police, I mean, George Floyd had done some petty crime and he was a bit high, but he was affable, cooperating, and still the Minneapolis police um, Derek Chavez killed him. So I think um the fact that it's a person of color makes them all the more vulnerable when they can't get services and are trustful of the services, of the services that they are. But I think it's also hard when the person is so sick, even if it is a person um who's white. Our son had a very similar problem where he also, just like Daryl Brooks, he thought he had to use his car to ram into another car. This is something that I write about in my book. So when I read about uh Daryl Brooks, it just haunted me because Jim ran into a car. His voices were telling him he needed to do that, command voices, or the world would end, or something. And so he resisted a few cars, but finally he did ram into a car and it did have two people in it. And just so when I I copied Mimi after she posted this on her Facebook, I put a post on mine saying there, but for the grace of God, oh, the Gryling family, because our son um did did the very same thing.

SPEAKER_02 15:36

Right. So there's there's a great deal to unpack here, obviously, a lot of issues. And the last thing in the suitcase I want to bring over to Jerry, who's patiently waiting. And but so there is the issue of color, there is the issue of a lack of standard of care, there is also an issue of blaming the moms. And I know Jerry, in reading about you and reading stories about you, you talked a great deal about the mother blame. And so I think for Dawn Brooks to write something like that, she had to be receiving some what did you do wrong with your son that he would go and do this. So I'm gonna bring it around to Jerry. And Jerry, thank you for being here tonight. You know, we want to hear your take on this, but first, if you can tell us, I'm sure you've told this story many times, but our listeners have not heard it. So tell us a bit about you, tell us about your son and your family and your advocacy.

SPEAKER_01 16:34

Thank you. Sure. Yeah. So my son uh had Tourette syndrome as a youngster, um, which put him in the psychiatric care system and did mean that he was experimented on a little bit with medications as a child. Um, those issues were very challenging, but sort of resolved in his middle school and high school years, and he ended up being a state champion speech and debate competitor in high school. He was very bright, had a really quick mind. He was really quick with facts and jokes, he was very affable. People enjoyed the presence of my son. Um, in his first year of college, he went to a private university in Oregon on a debate scholarship. Um, he came home that Christmas after that first term, and we had a pretty good time, but there was something that in hindsight was a little bit of a prodromal um psychosis that I could have identified if I had known then what I know now, but I didn't. Um, he went back to college that second term and in two weeks um was on the phone to us just not really making sense. And that ended up being his first psychotic break, and he never was able to return to college um after that. He tried a couple of other places and it didn't work. But he he took a free fall through the system pretty hard and pretty fast and ended up being incarcerated a couple of times instead of helped. He was involuntarily hospitalized at least a half a dozen times. He encountered police quite a bit because his psychotic symptoms were disruptive. Um he died of suicide in March of 2019. Um, and as I said to our state lawmakers as they were addressing Involuntary Treatment Act changes to legislation, he met criteria for treatment the moment he stepped off the roof of a hotel and plunged to his death. That's what it took to meet criteria for treatment. And so my response to your conversation about Daryl Brooks is the system didn't fail as the system is designed. The system is designed to create this exact type of disaster. The system is functioning by design when someone this sick causes harm to themselves or others. The system requires violence, danger, and injury. Treatment is not available until that threshold is met, therefore, the threshold is often met. And then everybody throws up their arms and says, Who failed?

SPEAKER_03 20:38

Nicely put.

SPEAKER_02 20:56

So I I can't even imagine what you went through. I mean, I can imagine it, but it's you know, we're we're not there. And and I know that you have been working tirelessly. Your son's name was Calvin. Calvin. Before Calvin's death, you were working to advocate for him.

unknown 21:16

Correct.

SPEAKER_02 21:16

And you founded something called Momi, Mothers of the Mentally Ill, and you also did other advocacy. So tell us Yeah.

SPEAKER_01 21:25

So I actually got involved in advocacy because my son had been incarcerated in Seattle, and it was so predictable that he would end up in jail because I kept learning about the criteria for treatment when someone isn't volunteering. And um, I I learned the term anasygnosia along the way, just like all of us do, and started to understand. For anyone who doesn't know why so anasygnosia means inability to. See. So it is a brain-based symptom of disease that about half of individuals with the most severe and persistent disabling psychiatric conditions have this symptom, anasygnosia, which means their brain is unable to perceive itself in a state of illness. So somebody who has this symptom doesn't know they're sick and seeking treatment doesn't make any sense to them. They believe that the rest of the world has gotten disrupted, and that's the problem because they can't see the problem inside their own mind because of the symptoms. So the the organ of perception is the brain, right? So if the or if the organ of perception is getting misinformation because of the illness, then it cannot perceive itself in a state of illness. So it's not denial, it's not refusal to accept something. It is an actual physical inability to know that you're sick. And I wish I had known all of that early on. No provider ever explained that to me. No provider ever suggested it as a problem. Um, I think most of us family caregivers learn about this by trial and error, and we start to realize I don't think my son has any idea that he's sick. Is that a thing? And we start, you know, we start asking each other and we start looking it up and we learn this information, right? So my son definitely had anasygnosia. He didn't understand the sicker he got, the less he was able to see himself in a state of illness, right? So he was not gonna sign up for treatment. So it was gonna have to be mercifully provided to him. And merciful care is not part of our involuntary treatment system. Our involuntary treatment system is the opposite of mercy, it requires somebody to be dangerous to self or others. Every state has a different set of laws, but they all require dangerousness at some level. So when you require dangerousness and somebody's that sick, you get dangerousness. So um, you you kind of brought up, you know, watching your son die of this disease must be awful. And it was, and watching my son be ill with this disease was awful. And I learned an important phrase from a therapist, and she said, grief contests are a cruel exercise, yeah, very good. And it's a really important knowing because I will never say that my son's suicide was harder than dealing with his illness, and and I I will not make those comparisons because grief is grief, and and we all as moms experience the grief of losing the child that we raised, and losing the child who was that bright light who the the light flickered and then it dimmed and then it went out, and then it flickered back again, and then it dimmed again, and it it never came back to the brilliance of its original light, and the grief of that was enormous. Yeah, we all and so we all as moms have to recognize the grief that is part of this process, and we're grieving at the same time, we are trying so hard to advocate and trying so hard to get services that make any sense, and trying so hard when they meet that narrow little window of threshold of criteria for a little tiny crumb of help that we pull the help in in that narrow moment of possibility before death, before incarceration, before they're in another homeless encampment? Um, so yeah, that was a long answer.

SPEAKER_00 26:22

And it brings me into something that I really want to talk about, which is grief and is what we as moms have to live with. Um one question I wanted to ask you before I get to the direct grief question is was there a time after Calvin died where you just reached a point where you were just, I'm done with this, I don't want to advocate anymore, I've lost my son and I'm through.

SPEAKER_01 26:51

No, no, and I say no because if I gave up on him, I would give up on myself, and I chose to live, I chose to live, and it was a choice because I didn't want to feel some of these feels because they're hard, and I chose to live because I have things to do that are mine to do, and I've done a lot of yoga practice, I know a lot about dharma, and when you know your dharma comes knocking, you either answer that door and you open it wide and you go all in, or you lose yourself. I know nothing about dharma, so I mean dharma is so tell me what dharma is. Dharma means your life purpose, okay. And it's a philosophy that that you know, when life purpose presents itself, you'll know. And and mine presented in this format, and it's not what I would have chosen, I would much rather be a competitive surfer. But being being born in Kansas and growing up in the Midwest, that wasn't gonna happen. Um, but uh, but no, I recognized that this was my dharma come knocking, and it was a painful job to pick up, but I knew it was mine because when I did pick it up, there was momentum there. And I when my son was a baby, I used to go over to his crib at night and I would whisper in to his little sleeping ear, you are so important, and I knew that deeply. I knew that, and it's still true, and that importance is now mine to carry, and I wish he had been the one, you know, carrying the message as a self-advocate, as a peer, but that wasn't his calling.

SPEAKER_00 29:03

So let me ask you something. In our culture, this is something I think about a lot, and I've read some of things you've written, so I'm interested to get your answer to this. In our culture, we have a real focus on getting past the grief. And I I think you know, this idea of moving on past it, and I think that it stems from the way we fetishize happiness and social media, and everything has to be perfect and wonderful, and everybody else's life is better than us. And I love that um that quote about uh comparing grief because that's a thing that I think we moms run into a lot. So I would just be interested to think to hear what you think about this idea of moving past grief and what we do with grief.

SPEAKER_01 29:53

There's no such thing as moving past it, you move with it, and it's a shape shifter, it's not linear, it bubbles up, you know, it walks alongside you. And you know, it's it's always there. And one thing I've learned is I have to teach people how to hold space with me. You know, people they're afraid to bring up my son. Oh, I didn't want to take you into a painful place. Oh, trust me, I'm already there, I'm there all the time. You are not reminding me about my grief that is a shadow that walks with me all the time, every day. You're just holding space with me. You're acknowledging that you see me and all that is here, right? Um, but I've written several kind of blog article things about that question, Mimi. And um, I don't know if y'all are familiar with Didi Ranahan's book. It's called Tomorrow Was Yesterday. And there was uh she was uh a guest on our podcast. She's been a guest. Okay, so I'm one of the 64 co-authors of her book, Tomorrow Was Yesterday, and my little two-page chapter is titled, My Goal is not happiness, but human understanding. Um, and I I wrote this little short blog, I guess we could call it, um, right out the week that I was having a uh service for my son, a celebration of life for my son. Because while I was cleaning out, my husband and I were cleaning out my son's apartment in Seattle the the week after he died. So he died on a Monday, that was a Friday. So four days after his death, we were cleaning out his apartment, and an MPR reporter was alongside us interviewing us as we went through that process. And this is a topic that had already been stirring for me, but I found myself kind of therapeutically sharing it with this reporter in those moments while I'm literally folding up my son's clothes to give away. I said, I think, you know, we sort of miss the point when we say that happiness is the goal. The goal is to experience the full complexity of human emotion and to show up for all that is here for us as human beings and be with all of that emotion. And there's some richness there that goes way beyond happiness. I think parents have a tendency to want to gloss over some of the emotions that are a little more complicated. And we have a phrase in our culture, I just want you to be happy. That is so passive aggressive. It is super passive aggressive to say, I just want you to be happy. Because what that says is just show me your happy self. Because anything harder than that, I just don't really want to deal with. And that's not that's not showing up for each other as human beings. So I just really and I taught yoga for 20 years, and we used to have conversations on these kinds of topics, but I just really encourage people to sit with what is in a very real way with curiosity and and not push away what's true and happening.

SPEAKER_02 33:50

I I love I love that. Um I'm I've written another book and I deliberately called it happier made simple, not happiness made simple, because I talk about that, yes, yin and yang. I mean, it had even the two parts of the yin and yang have a little bit of the other one in it, if you look at the at the symbol. And if we were happy all the time, how would we know when we're happy? So it's this whole Twilight Zone kind of thing. I I I love the way you put it that we're here to experience the complexity of human experience. I think that's how you said it. And I will put it in the show notes. I have a question for you along those lines, and I I will tell you why I'm asking it to you. It has to do with uh another mom in the trenches, Laura Pogliano. I don't know if you know Laura.

SPEAKER_01 34:42

I do.

SPEAKER_02 34:43

Okay, so Laura lost her son Zach to this illness in a different kind of way, and but she is a great advocate, and he she was a great advocate with him when he was willing to be that. And for a while, Zach was her partner in saying, Yes, I have schizophrenia and I'm doing great. And unfortunately, he's no longer with us. But Laura posted a story on Facebook, which is why I feel free to share it, which was about before COVID, uh getting on an airplane, and the the uh TSA officer was going through her bags, and it was after Zach had died, and saw something like a video game or something, and it was susp anyway. She said, No, that was my son's and I guess he had the time to say, Oh, really? Oh, my son loves video games too. And she goes, Well, my son is no longer with us. And he said, Oh, tell me about him. What was he like? And she she got a chance to talk about what he loved and what he did and what his passions were and what was good about him and the challenges he went through. And when she was done, he said to her, This always makes me cry. Um, well, now I know not only that your son died, but that he lived. And so for friends of mine that are going through grief, I I sometimes ask permission, but I do want to hear about, I do want to hear about the lives they live. So I'm gonna ask you, tell us some wonderful things about your son.

SPEAKER_01 36:24

Now you're gonna make me cry. Isn't it funny? We can it's so interesting how we can talk about like the the hard parts, I think with a little more stoicism. But when we talk about the soft parts, that's where it gets more emotional. But um he loved to surf. So we learned to surf um when he was uh preteen age. We started, um, we had played in the ocean his whole little life. You know, we had pictures holding his little baby self over the waves, and so we always loved the ocean. Um we moved to the Northwest in 1995, which was the year that he was born. So I left my landlocked Midwest upbringing and came to Washington State and started going to the Oregon coast in 1995 when my son was born. Um, but we didn't start surfing until he was like 11 or 12. Um and so he kind of learned alongside us because we were new to it. At the same time, he was of an age to give it a go. And so we would go out as a family and sit on our boards and trade waves, and that was super fun. And I remember one super fun time when his dad and he were back home and I was there and they they were coming that day, and I left a note on the picnic table at our camp. We had a Eurovan, surfer van, and I left a little note on the picnic table that said gone surfing, which is you know a plaque, but it was for real. So it was just fun. And so they paddled out and found me. And I'm like, hey, Calvin, how was your first day of school? Did you have a good day? Yeah. And so he was telling me about his first day of school while we were literally trading waves. Um, and that was a real high point. Um, we did a trip, we did a surf trip all the way from the Oregon coast down to Southern California, hitting longboard. We at that time we were all three longboarding, hitting longboard breaks all the way down the west coast um when he was 15.

SPEAKER_02 38:38

So your only child, by the way?

SPEAKER_01 38:40

Um, I have a stepdaughter who is um 10 years older than him, and she has two little boys. So I'm a grandma. I have a four-year-old grandson and a five-year-old grandson, and um, they're coming for Christmas, and we've already had them in the ocean, so that's been fun. Um, they have Spider-Man wetsuits that are pretty much. Of course they do.

SPEAKER_02 39:01

I have a three-year-old grandson, so I know it's all about Spidey and his friends.

SPEAKER_01 39:05

Yeah, yeah. Yeah. So thanks for asking. Those are some high points, and also watching him compete um in really high-level debate tournaments. Um, he was just amazing the way that he would pull facts out of his mind to make an argument, and people loved to listen to him speak.

SPEAKER_02 39:24

Sounds amazing.

SPEAKER_01 39:25

Thanks for asking.

SPEAKER_02 39:26

You're welcome.

SPEAKER_03 39:27

So I my our son has had several suicide attempts, and one of them was when we took a vacation. We went to um New York, upstate New York, and we were there. He was doing well, we kept texting him, and he was going to prepare a meal for us, and then we would get home and we'd be reunited. He didn't want to go on the trip with us, even though the rest of the family was there. And then we got home and he was in the hospital. He had had a serious suicide attempt right at the very end of our vacation. And he's had, you know, maybe I know your son had um had jumped off the bridge at one point. I read on your your national uh was that uh version anyway. I forgot the news.

SPEAKER_01 40:14

I was on I was on PBS News Hour, the brief brief but spectacular.

SPEAKER_03 40:18

Yeah. Okay, yeah. So I I watched that one, and you did that, was such a beautiful program, um, just like you're doing here tonight. You're such a wise woman and so articulate. And but I'm wondering, so now we're going on another trip um in a week and we're gonna be gone. And again, Jim doesn't want to go with us. So we just are, you know, having to, we've tried everything to get him going. But in the back of my mind, I'll be thinking of that other trip. So, how did you in between the suicide attempts, did you do you have any advice for others, or how did you um cope in between there as far as worrying about him trying it again?

SPEAKER_01 41:04

It's probably not an answer that anybody's gonna like. I can't save him.

SPEAKER_00 41:13

I get it.

SPEAKER_01 41:14

You know what, Jerry?

SPEAKER_00 41:15

I got it. I can't save him.

SPEAKER_01 41:18

I have to live my life, and I can't save him, and my worry isn't gonna save him. Amen. And um, I will tell you that I I did a suicide survivor group. Um, it got kind of interrupted at the start of COVID. But one of the things we did is we looked at a video of a researcher from Canada who has identified a place in the brain that is physically different in people who complete suicide. And there's actually evidence that this mechanism in the brain that has to do with impulse control is broken, and you can't fix that, you know. So you have to you do the best you can, and I will say you make sure the last thing you said to somebody that you love is something you can live with. I love it.

SPEAKER_00 42:21

You know, I um uh this is something that I've thought about a lot too, and the turning point for me came with a very similar realization. You know, my son is still alive, but I worry every minute of every day. But there was a point somewhere along the trajectory where I realized I had to make friends with, or at least acquaint myself, with the very distinct possibility that he might end up dead. And I had to look him in the eye, and I had to understand that it's part of my life now and live with it, and that there was nothing I could do about it. And once I did that, once I said the words to myself, he could die, and there's nothing I can do about it. It made it easier to go forward. And I think that's the same thing. It's fundamentally you can't save anyone else.

SPEAKER_03 43:16

Right. Well, we just decided to, we had to take this trip. You know, it was we have to do some things with with our daughter, you know, we can't just um always stay home with him just in case, because that wouldn't be a life. I don't think he would want that either.

SPEAKER_02 43:33

And it might not even work, it might not even work.

SPEAKER_03 43:36

He would find somewhere else to do it. But in the meanwhile, you know, our daughter is looking forward to time with us. Our granddaughter, our granddaughter is 17, so she's soon to be out in the world. So we feel we have to take advantage of chances to be with her. So thank you for those that advice.

SPEAKER_01 43:54

And you have the right to your life. The do you know, Mary? Oliver's poem, The Journey. Yes. The only one you can save. You save the only one you can save. And that is you.

SPEAKER_02 44:11

So we'll put a link to that in the show notes as well, as well as the brief but spectacular and everything we've mentioned, we'll there'll be links in the show notes. But I we're we're actually running out of time. We have two or three minutes left, and this has been such an amazing discussion. I I do blog a lot about the balance that every family member faces of letting go and stepping in. And it can be particularly precarious when you're worried your child might commit suicide or go off his meds or you know, I it but all parents face it. All parents face that balance. There's the stakes may be a little bit higher where schizophrenia is concerned. There have been times when I've comforted myself at very low points by going, I've done all I can. If there's a heaven someday in heaven, his soul will thank my soul for doing my best. And I have, you know, I've gone there because sometimes you know, we do we are doing. And I if you are watching on YouTube, when Jerry said you're not gonna like this answer, I say I can't save him. All three of us were nodding vigorously. So you would have seen that, but I want to tell you if you're listening to it, that we did like your answer because we had felt it, and I'm betting a lot of our listeners did as well. So in the final couple of minutes, Jerry, I want to ask if there's anything you wished you could have said tonight that we haven't had a chance to ask you, any advice, any? I mean, you've given so many words of wisdom. Anything else you would like people to know about what they can do, uh, ways to say, you know, last bits.

SPEAKER_01 45:58

Put on your own oxygen mask first. And I know it's kind of a cliche now, but I in my professional work, I coach families whose children are in special education. And so I use that a lot. And they need to be reminded, all parents need to be reminded that your self-care is your top responsibility. And it's not just because you're no good to anybody else if you're not breathing, it's because you owe it to your own life, and and think about you know, the the children who do go on in the world, you want them to take care of themselves, right? You have to model that. If you model martyrdom, you're gonna raise martyrs, so you want to model what you want to see in your own children. So if you want your own children to take care of themselves, to follow their own path, then that's what you model.

SPEAKER_02 47:11

Thank you. Thank you very much. Yeah, and and I know that advocacy work, many of us find purpose in that, whether our children are doing well or not. And so continue to, as Mindy says, fix what you can in your book. But I yeah, that's the name of my book. I know the title. Um so thank you so much for joining us. We're proud to have you as the fourth mom in the trenches tonight. Mindy, uh, Mimi, I'm gonna let you close this one out, but Mindy, anything to add?

SPEAKER_03 47:44

No, I already said thank you, but I'll just say it one more time. Thank you, Jerry.

SPEAKER_00 47:50

Thank you for coming on, Jerry. And I'd love you to come back another time too. I think we all could uh learn from you. Um and I like the broadening of the subject when we talk with you, where it's not just about schizophrenia and how we're gonna change the laws, but it's about schizophrenia as part of the world. And you see, that's the thing that I talk about when I do my talking is that this is part of everybody's world. It's not just part of our world, and these people have a right to a place in this world, just like everybody else. You know, we have the the Page Americans with Disabilities Act that that was changed everything because those people have a right to a place in this world, they have a right to a ramp to get them into the damn movie theater when they can't walk. Well, our kids have a right to a ramp too, and we gotta build it. And the broadening of the subject matter, I think, will make it more uh resonant to other people.

SPEAKER_03 48:59

So and our kids are actually in the ADA too, and one of the rates in the ADA is for employment. So I always love that one because that's an end goal. And how can you be employed? How can you have the right to be employed if you're not healthy enough? So I think our whole improvement of the mental health system is in the ADA if we would use it. Whole person care.

SPEAKER_00 49:24

There's another podcast. There we go.

SPEAKER_02 49:27

All right, thank you, Jerry. Thank you so much. This has been episode 32, three. Tonight, four moms in the trenches, mama bears in the trenches. Thank you so much for joining us. Share, subscribe, join the Facebook group, and uh keep listening. 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.