Never Truly Out of the Woods - “Long-Haul” Schizophrenia and the Family (Ep. 51)

Living with schizophrenia or other SMI (Serious Mental Illness) in yourself or in your family is like a game of “chutes and ladders” - you’re never really out of the woods, but there are wins (progress, good moments and memories) and hopes along the way. 

Mimi, Mindy and Randye catch up on the latest family journeys with SZ - life-threatening crises, changes in treatment, finding hope and joy, and resilience - in this opening episode of Season 3.

We also preview some upcoming guests, and congratulate the production “Tell Me I’m Here” - a powerful Australian theatre adaptation of  Anne Deveson’s memoir of the same name. Cast and director listened to our podcast for inspiration and understanding, and their show is getting rave reviews and increasing awareness of schizophrenia in the family. - thank you! 

LINKS:

https://belvoir.com.au/productions/tell-me-im-here/

https://www.theatretravels.org/post/review-tell-me-i-m-here-at-belvoir

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

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

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

Hosts:

Who:

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

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

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding. She has served on the national board of the National Alliance on Mental Illness and is the current president of her NAMI county chapter.  Her acclaimed memoir is “Fix What You Can.” 

Transcript

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SPEAKER_02 0:00

Welcome back to Schizophrenia Three Moms in the Trenches. This is season three, and we start this season with an episode talking about the journey of living with schizophrenia in yourself or in your family as a game of shoots and ladders. You are never really out of the woods, but there are some wins and hopes along the way. We also congratulate the cast and the production team and playwright of Tell Me I'm Here, a powerful theatrical adaptation of a memoir of the same name produced in Australia. And they used our podcast for inspiration, so we feel like a part of it. Thank you so much. Welcome. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kay. We have a lot coming up. We the three of us have to get together and figure out schedules and everything, but definitely coming up this season, we're going to hear from Dr. Gary Tsai, who is a psychiatrist specializing in co-occurring disorders. He's a documentary filmmaker. He did an award-winning documentary called Voices, the Voices Documentary, and author of Against All Odds. So he's coming on. And he's also a family member, I believe. And then Stephanie Marcassano, who was featured in the New York Times and got a lot of requests to be interviewed, and she chose us. We're so excited. She's going to talk about the loss of her son and the life of her son and something she created in Westchester County called the Harris Project. And I believe you can go to theharrisProject.org, but we'll find out more about that. And we've spoken a lot last season about Judge Leifman in Florida, and he has agreed to come on the podcast. And we also, I just found out today, you guys don't know this, but there is a memoir that preceded ours by 30 years called Tell Me I'm Here. She did a memoir about schizophrenia in her son, and unfortunately also the loss of her son. And it was a beautiful memoir. I've ordered it, but since it's Australia, I haven't gotten it yet. Mindy, I think you ordered it too, but I don't know.

SPEAKER_00 2:26

I I've read it. It's um it's a very, very good book. You can tell it's 30 years ahead of us because there are some things that have that actually have changed. And it's of course Australia, but it's a the the emotions of what mothers go through and what families go through are timeless and it's uh wonderful.

SPEAKER_02 2:46

Absolutely. And so I was just in touch. I had a hard time finding her, but I found her on Twitter with the playwright of a play that they created out of this memoir. And it is still playing in uh in Australia, Bellevoir Street Theatre in Australia. And this is having incredible rave reviews. Letitia Cusseris leads the show with a masterful hand. The performers flourish under her direction. Now, if you're just listening to us, we are all moms of sons we love and they all have schizophrenia. We've all written memoirs about it and we advocate for them. And fortunately for us, knock wood, we're all still here. Our sons are all still here for us to share our experiences. And we know, and tonight's topic is just a catch-up. And I'm just calling it you're never quite out of the woods. Would you guys agree that with that sentiment? So we're we're gonna catch up, but in the reviews of this play, it mirrors this. It says, while elements of the first act are challenging, it emulates the chaos of the author's life as she cycles through medical professionals to help find help for her son. It leaves you gasping for breath alongside the mother. So this play is getting incredible reviews. And I've been in touch with the playwright, and she is going to come on the podcast.

SPEAKER_00 4:12

Oh, welcome. That's fantastic.

SPEAKER_02 4:15

Yeah, she is in England. So now we're becoming international. And so I believe we've spoken about this a little bit in the last episodes of season two because the cast contacted us. The cast and the director all listened to our podcast to get the recent view of what moms go through. And they're just so lovely to us. And I just wish I could see this play. But anyway, we're very excited about all the things coming up. And congratulations to the cast and director and playwright of Tell Me I'm Here. It looks like a very powerful piece of theater. And I'm going to see what I can do about bringing it to Connecticut if I can. But at any rate, that's in the future. And we are all here and we haven't seen each other for five weeks. So I thought we would just catch up and talk, like three moms do, about what's been going on. And we could tell a good story and a not so good story and take it from there. Sound good?

SPEAKER_00 5:13

Yeah, sounds good. I'd like to hear first from Mimi since she's got the dramatic demonstration that nothing's ever for sure story.

SPEAKER_01 5:24

Yeah, I actually just came back from Seattle. Nick had his um follow-up appointment with the lung specialist there. Yeah, it was it was quite crazy and um unexpected. And it really almost took me down this one because I just wasn't ready for another go-round. And I and it was somehow more difficult to comprehend and deal with that it wasn't about his mental state.

SPEAKER_02 5:55

Yeah, so tell us, you know, for our listeners who don't know, we were kind of on the text thread by your side as much as we could be through this ordeal. But for our listeners, so tell them what's happening.

SPEAKER_01 6:18

It was just a very bad pneumonia. And I think that it probably started days before he even let us know anything was going on. So it got bad without any treatment first. And then um they think it's probably, you know, going over just a million um possibilities of how this happened. They think he just kind of got pneumonia and it got bad, and also because of the clospine and the excessive salivating, and they're thinking maybe he aspirated a little bit in his sleep, and a little piece of something went down into his lungs. That's not uncommon. And um he just, you know, he wouldn't go to the doctor the first day, and the second day he was really sick, and I I went over there and he wouldn't go. And his caregiver and I were trying to convince him, and finally, I ended up just I called the paramedics because I just didn't know what else to do. I wasn't going to be able to wrestle a 200-pound, six-foot tall guy into the car myself.

SPEAKER_02 7:28

Was he was he um reluctant to go to a hospital? I mean, I mean, this is like uh pneumonia is horrible anyway, but here you have a son whose main experience with hospitals has been psychiatric, right? So so a problem that's that's a really bad problem for any family becomes exaggerated, right?

SPEAKER_01 7:53

Way worse because the thing was he didn't he wouldn't say, and I kept saying to him, why won't you go, Nick? They'll take care of you. And finally, and he did not want the paramedics. He was gonna be mad at me when they showed up, and they did, but then he said to the paramedic, he said, the paramedic said, Why don't you want to go to the doctor? You know, you're sick, you need help. And he says, Because the last time I went to the hospital, they kept me there for six weeks against my will. And it was a psychiatric hospital. And of course, I should have known this and foreseen this, but it's not something, and it's been a few years since he's been in the hospital, and it's not something that he expresses any day-to-day concern about. But boy, when he was sick, he was hiding for that reason. And um, and then we got him to the hospital, and he was dire, direly ill. I mean, he was very, very sick, and they admitted him into the hospital, and it was here in our small town hospital, and he was there for four, five, six days, and uh the last three of which they had decided they already needed to send him to a bigger hospital because they didn't have a thoracic surgeon. And um, and then we had to wait three days for bed to open up. There was no, there were no beds.

SPEAKER_02 9:14

For just and we're not even talking psychiatric beds, we're talking regular beds in the hospital. Oh my god, what was happening all this time with his psychiatric meds?

SPEAKER_01 9:24

Well, so we we get there and I called after Lateman, and um he says, Okay, you know, let's just wait till tomorrow and we'll see. Because he talked to Nick on the phone, and Nick sort of sounded okay at that point. But then as soon as we realized how very sick he was, he said, cut the closopine because the um you metabolize it differently when you have inflammation and when you get very, very sick, your closine levels can skyrocket and you can go into clospine toxicity. So it's something that's very, very dangerous. And um, and people die in the hospital because of it, because they get, I mean, if I hadn't been there, they probably could have died from it because who would have known? They don't know, you know, they don't know about the closopene. So it's very tricky. So I was there doing my usual thing of running interference, talking to the doctor in New York, talking to doctors here, trying to get everything taken care of, worried terribly about his psychiatric state, in addition to his you know, physical state, and he just kept deteriorating. And I mean, he he got um he ended up with blood clots in his lungs, he ended up with a collapsed lung, he ended up with I mean, he was in the hospital for 27 days. Was he also deteriorating mentally? It was really interesting because through all of this, his mental state has stayed really good. He's he's actually better now than he was before. You know, the first day when I brought him into the hospital, he was a little delirious, I think, from fever and just being sick. And he was talking about, he was he was fixated on figuring out how this happened, and he was talking about, oh, I know what happened, mom. I know what it is. It's the new people that moved in the building. You know that happens, and it goes through the vents and it's going through the pipes, and that's how it got in. And and I was like, oh man, here compensation road, you know, this is gonna be bad. But then turned out, I guess that was more because he was kind of delirious, and his mental state stayed really good. I mean, he was really kind of asleep for most of this because he went into clozepine toxicity twice.

SPEAKER_02 11:50

What does that look like? And just so you know, um, the Dr. Leitman we're talking about is someone who it does, we've talked about on episodes before, you can check it out. He prescribes clozepine through the eye of the nephrologist that he is, so that he understands the combinations of the clozapine with other things. And we always think about psychiatric drugs, but the fact that he understood clozpine plus the inflammation of the lungs, again, it's testament to how important it is to understand the interactions of all these medications, which not everybody does, America.

SPEAKER_01 12:28

No, and it's certainly, you know, uh again, there's such a bias against clozepine. I found in the hospital that most of the uh clinicians and doctors they didn't want to talk about it. They go closopine and they roll their eyes. And so I was the one trying to manage the clospine. And um, closapine toxicity looks like a coma. You know, you just you just lose and you can die. I mean, it's life-threatening. And twice he was he was in toxicity once because we didn't know to bring the closerpine down, and once because the doctor at Swedish Hospital didn't follow through on changing his orders when when you know I kept telling them to run the levels, and when I saw it was getting higher, Dr. Leitman called and they told them to cut it down, and they didn't do it. And it wasn't until three days later when the doctor changed, and the new doctor called me and said, Me, I need to get some idea of his baseline. Is this how he always is? And I said, No, it's not how he always is.

SPEAKER_00 13:33

He's not even awake. Why didn't they do do what Dr. Leitman said? Is it professional, you know, have your back up if something what to do, or did he just forget?

SPEAKER_01 13:44

I think it fell through the cracks. I think it fell through the cracks. Um for Pete's sakes, yeah.

SPEAKER_02 13:50

But it's having been there, Mimi. And this is, you know, we we always try to get some lessons out of this for our listeners. Um so if you hadn't been there, what do you think might have happened?

SPEAKER_01 14:03

I think there's a good chance he would have died. Wow. I mean, he was he was dancing around that anyway. It got that bad with the pneumonia, and then um the complications of all the other things and trying to manage it and stay on top of it and educate people about cause of me. It it was it was a lot, and this is what happens um with our loved ones who don't have the mental capacity to advocate for themselves. I mean, really, they say, you know, mental illness, regardless, you should always have somebody advocating for you when you're sick because you gotta keep on top of all these things. But back to the other thing, it his mental state, I mean, it's it's shocking. He seems clearer and more uh connected than he has since he's been sick, and now we've got him down much lower closapine because we're slowly building it up because the inflammation's gone, so he can absorb it differently. But I think we're gonna end up with a different um dosage of less. Yeah. But no, but it's it's it's we don't know why or how or what, you know. I mean, there is some research about um antibiotics and schizophrenia, and there've been some studies with a certain antibiotic, a certain strong antibiotic, um, not the one Nick was on. And and so there, you know, there's some noise around that, but nothing proven or anything. But it um, I gotta tell you, he is distinctly better than he was before it started.

SPEAKER_00 15:48

How long was he down so low on clazepine?

SPEAKER_01 15:52

Well, he was um he was he was down it, you know, for a whole month, it was just very low. And we were just, and but it takes a long time, it's a big lag time to get the results because they have to send it out. It's very hard to keep track of.

SPEAKER_00 16:10

The reason I was asking is because um Jim at one time had to go cold turkey off of clazepine, and for uh two or three weeks he was better than he'd ever been because he still had the residual benefit of clazepine, but not all the side effects that come with any antipsychotic. So um, you know, if we could have kept him that way all his life, we would have been thrilled.

SPEAKER_02 16:35

Yeah. It's it's such a delicate balance. And this is, you know, again, if you're listening for the first time, uh we our books are Fix What You Can. That's Mindy's book, Mimi's is he came in with it, mine has been behind his voices. And what I just wanted to keep reiterating here, because we haven't, we've been in touch by text and email, but we haven't seen each other on Zoom for a month, one of these days in person, ladies. But I always refer to this journey as uh, you know, a game of shoots and ladders. Like you, you, you, you think your loved one is stabilized to an extent, and you hold your breath, and today was a good day, and maybe it wasn't a good day, and then you're, you know, maybe you took a step ahead, and then boom, you hit a shoot and you're down to square two. And then sometimes it's going really well, and you, you know, like they get on the right medication or the right treatment, or they get a job, or or some unexpected surprise, like they're better after pneumonia, and then you're like climbing up the ladder and you got to square 30. And it's just it's it's a game. And I think of it like the way friends of mine who've got COVID early on before the vaccinations and they have long-term COVID and just symptoms that keep popping up and down. It's like long-term schizophrenia. It's always long-term, you're never really out of the woods, but we keep bravely plotting on because of love, right?

SPEAKER_01 18:00

Yeah. I mean, that's what I was saying. This one, for some reason, was the hardest bout for me to deal with because I just at one point, there's one point in the middle of it when you need been in the hot in the ICU for 14 days, and it just wasn't getting better. And then every day was something else. And then they called me in the morning and they said, Well, he has blood clumps in his lung. And, you know, like all of you, I'm sure, like all of us, you know, I tend to go into just coping mode, you know, and I just uh when I'm going through these things, and so I just go into that mode and I just troubleshoot and I take care of things, right? And I hung up the phone and I just got this wave of just fear and grief, but also wow, after everything, is he gonna die of pneumonia? I mean, is that gonna be what happens here? And and then right after I had that awful feeling, the next thought that came in my mind, because by then it we had been two weeks of it of being scared and beaten down and and watching him get sicker and sicker, and there was that moment where it came right into my head, the next thought, maybe it's better, maybe it's just better, maybe this is how it's supposed to be. He'll be out of his misery, his life of disappointment and and pain. And what am I fighting for? You know, I'm fighting for what? Maybe this is how it should be. And then immediately after that, guilt a huge wave of oh my god, I'm going to hell. You know, I'm just the biggest piece of shit that ever walked the earth. And I sat there and I was like, and usually I don't even go there in the middle of these things happening, but it was like this boom, boom, boom of these thoughts. And it was so overwhelming. And I went in, and you know, my husband and I don't go around and around this anymore because we just troubleshoot. Because if we start to really ruminate, our um grief and pain just grows exponentially, and there's not that much new to say, so we kind of don't talk about it that often. But I was just sitting there and it was crushing, it was crushing what I was feeling, the pain of the fear of Nick and the pain of the fear of losing him, and then the guilt of thinking, well, maybe it's better. And I just went in and I just like spilled it all out. And my husband and I sat there and we had a really, you know, one of those just good, close, connected talks that that you need to have in order to hang in there and get through this. And then I felt better afterwards, but you know, then it was just still two more weeks till he felt better. But that was that was for me was a real low.

SPEAKER_02 21:06

Um you know, feelings, the feelings, feelings come and go. And um, I don't know a caregiver that I know well who hasn't occasionally thought, and it doesn't have to be schizophrenia, it could be Alzheimer's, it could be whatever. If you're giving your life to caregiving, I think it crosses almost everybody's mind at some point. Absolutely. Right. Maybe it'll just be maybe this is supposed to be done now, and and then we feel guilty the very next moment because and I know people who have thought that, and I felt it when my father had cancer, and you know, it just he fought valiantly for 12 years, and then it looked like it wasn't gonna was just like just you know, let it be over with. But then when it is, you you wish it wasn't. Like you always like the having the wish isn't really like a a Real wish. You're not like asking the genie in the bottle for this to happen, but it's just some of the feelings that flow through us.

SPEAKER_01 22:06

Yeah.

SPEAKER_02 22:07

And especially with schizophrenia, when things are bad, you wonder. You wonder.

SPEAKER_01 22:11

Well, yeah, I just, you know, it's that wall you hit him. His whole life is disappointment and pain, you know, over and over and over. You know, we get used to it and we can deal with this. And you know, the other kids are doing all right. And you know, but but for him, this is his one life. And it just hit me in a way it hadn't in so many years. I'm sorry. Yeah.

SPEAKER_00 22:41

I think the longer we go, you know, when you have a plateau or a safe spot or things are kind of stable, and then you're back in it again when you haven't done it for a while, you know, I think it's sometimes worse because the excuse me, the PTSD comes back, you're right where you were before, and you kind of lulled yourself into thinking you were done with that. So whether it's pneumonia or a mental health crisis, to be in crisis again and thinking maybe this is time for it to be done and feeling guilty, all of that over and over, we've done it so much that I think um doing it again is worse after a longer period. I don't know what you guys think of that, but that's what I think.

SPEAKER_02 23:25

I do. I think it's, you know, one of the things that always struck me the first time I took um Nami's Family to Family course, which is an eight-week free educational course you can take to arm yourself with education. We highly recommend it. One of the things that I really resonated with was when they said it's hard because there's no timetable for recovery. If somebody breaks their leg, they're in a cast for a while, then they get out, then there's some physical therapy, and you know, little by little you get better and better. So people bring casseroles in the hope that they'll get better. And we always say it's a no casserole illness because people don't bring casseroles, but you know, sometimes they do the first, the first time they're in the hospital, but by the time they're in the hospital the 12th time, they don't know what to do. There's no timetable. So it's like I said, it's like chutes and ladders that you can't predict. Oh, it's doing great now. So, you know, maybe six months from now, he'll be able to do this and then do that. It's not like you so no timetable for recovery is hard. It's it's um again, those ups and downs. How is Jim doing, Mindy?

SPEAKER_00 24:34

Um, well, that was in case you heard the doorbell in the background, that was the door, he got some meds delivered. So that was nice. Um, Jim is actually, we're in one of those stable periods. So watching what was happening with uh Nick and Mimi just you know made me think be grateful for where I am. But um we just went to Colorado, we went to the mountains. Jim is um that's utopia for him to nirvana to be in the mountains. And we went there three years ago and he actually declined to go. We have Roger, Roger, my husband has a brother there. And this time we were there for um a family reception, and we had they had a COVID wedding for one of their sons. So we had a wedding reception, and Jim actually has lost so much weight with um being on meds that are for diabetes. He had lost a hundred pounds actually in the last year. Wow. He was able to get a suit that he wanted to look nice in. He had it tailored, and so he was, you know, doing really well, and you know, I think felt like a million dollars in that suit. And then we stayed over a few days um in a cabin in the Rocky Mountains. So that for him was, you know, like I said, the nothing he could do would be better than that. So we hiked and we sat on the porch and drank wine, and and so it was, you know, really wonderful to be so happy.

SPEAKER_02 26:13

That is that's so good to hear. And I'm glad we don't all have like sob stories to share because I've been thinking a lot about just racking up good memories. And my son Ben, again, his his uh pen name that I penned, but anyway, Ben, is he's having his ups and downs. And when he has a good day, my best reaction is okay, we had a chance to make some more good memories. And so put it in the bank, you know, because next week might not be so good. So so you've had a whole summer of building up good memories, and that's fantastic because I know we've all gone through periods where we thought we're done, we'll never have a good memory again.

SPEAKER_00 26:56

Right. And then after he got back, he felt so well that he went to his own apartment and he hasn't actually been there for any more than to touch base and get the mail for um, you know, almost since before COVID. And so he went and then he was there and for three days, and we did not hear from him. And then I began to panic. I thought, oh, and this is a wonderful time. And now this is how this is gonna end. He's so happy somehow he saw his life not being quite as good as he wanted it, his cousins and so forth. So um, but he was just what binge watching old movies over the Labor Day weekend. But you know, just that really utopia and then a period of nothing was enough to make me panic.

SPEAKER_02 27:46

Yeah, of course. It's like PTSD, because the last time that happened, who knows, right? So he's doing okay. Is he spending more time in his own apartment now? Well, now he's back.

SPEAKER_00 27:56

So, but but three days when he hadn't really been gone for over two years was quite a span. But we'll see what happens in the future.

unknown 28:05

Yeah.

SPEAKER_02 28:06

It is, you know, you we're, you know, we see the light to get out of the woods, and then we're like, whoops, nope. Now let's go back in. And so we're having kind of a a mixed bag of a time. So my son, as you know, if you're a regular listener, you know, he he used to be, and and this is again, this podcast is not a commercial for Clausreel, but for me, that was my favorite medication he was on, but it wasn't his. And he's currently on a time release injection of Haldol. And it's what's good is that he doesn't feel stuck having to take medication every day. So that's good. He feels more free. And we've had we've had people on the show who um a couple of them have asked me to take their episodes down right now. They're just going through a period of not feeling okay, and that happens with schizophrenia. But we have had people talk about how they like the injections, but they know when they need it. My son doesn't know what he when he needs it, he just follows the schedule. And given the uh given his druthers, he would not take it. What's good about it though is that if he wanted to stay here overnight, he could. We don't have to give him medication. And some things are better. He seems a little less paranoid, a little more open. And yet I see his handshaking when we're not looking. I see a few twitches when we're not looking. And uh I believe that once a month is not frequent enough because we know if he's due for five days, he may come and God bless him. And I always like to talk about the strengths of our sons because everyone always asks us what's wrong with them, what's wrong with them, but what are their strengths? My son, unless the illness gets so strong that his good intentions get totally squashed, when given the option, he will opt for good intentions. So I see him hold it together in order to play with his nieces and nephew. Like he'll hold it together for them. And then when they're not looking and he goes out for a cigarette, and it's like this close to needing the injection, I see him talking to invisible people. So I know he's I see the symptoms, and you know, it it's it's frightening to see because I remember when that led down a really, I don't want to say dark path, because he's thank God not violent, but a uh, you know, a very um paranoid path, a very strange path. And so I'm just like, take the injection. I'm like, I'm like Shirley McLean in terms of endearment, going, get my son injection. So, you know, the sweet spot is, you know, a couple of weeks after it ramps up and before it ramps down on those good days. We're like, he's back. We got some good memories today. But but when he needs it, um, it is frightening. Now, the other good thing is he's working. Knockwood. He got a job in a a um a superstore, a coles, and he's taking the job seriously. He's biking to work, he loves working. I there are six or seven days will go by. I don't hear from him, but he's in a group home with staff, so it's okay. And a friend called him from his childhood and asked him what he's doing. And for the first time ever, he said, Oh, I live in a group home. Like he's never said that before. He's always like roommates. So it was a it, you know, then there are there are the wows and the fact that he bikes to work, loves his group really good exercise and motivation. Ask me if he has saved any money from his paycheck. He buys clothing, but he's not buying drugs. So, you know, I mean, so it's just like I just try to say, okay, I I'll I would love to take another day and make more good memories, but we didn't get to see him this weekend. He was working, then I was working. So it is a relief to have staff to take care of him. But I just don't know what next week will bring ever. So to see my son shaking like he has Parkinson's is frightening. And uh, but you know, you got to stay in the moment. That's my lesson. It's just stay in the moment. If it's a good day, take the good day.

SPEAKER_01 32:43

Well, you know, the interesting thing is that's that's the lesson everybody should learn about every situation. Yeah, but I mean that I mean, there was this there was this convergence of I had gone off to learn yoga and meditation and all of that so that I could cope with this situation with Nick and it changed my whole world outlook, and then I could cope, but I've realized that I should always have been that way. You know, that's the way to be, is in the moment, and and not trying to control everything. I mean, I I know that that's been my downfall in my life, and this was like a pretty harsh awakening, but it did change the way I interact in the world. Big time.

SPEAKER_00 33:27

There are some good things about schizophrenia, and that's one I feel that way too. I'm probably not as free of a spirit ever as you mean, but in my world, I made some progress.

SPEAKER_02 33:41

And that's how we're all we're each each of our families and each of our loved ones, you know, we're on whatever journey we're on. And I think I've told you guys these story, this story before, but uh a friend of mine who sadly passed away two weeks ago. I'm just floored, but he had um pulmonary fibrosis. And I thank God I went into New York and you know, the journey is always part of the gift, and visited him for two or three hours when he was seen hopeful. And he died a week later, but that's just like his last words to me were, I just want more time, I want more time to help more people. And that, you know, that just stays with me. And anyway, he had sent me to this psychic astrologer or whatever as a gift one time, like 10 years ago, and we were talking about my son and everything. And and I remember saying to her, you know, look, there has been good things for me about schizophrenia. I, you know, I'm able to help people with my journey and I become more compassionate and blah, blah, blah. But I, as I'm sure you guys agree, I would give it all up in a second in order to be well, you know. And and she said, Well, that's not your choice. You know, this whole thing isn't about your journey, it's his journey too. He's on his journey, and you're just a supporting player in his journey, and so it kind of freed me. You know, I don't have total control over his life, and it was kind of freeing to realize that, you know, and I don't know why, I don't really spend a lot of time going, why, why, why? Because it doesn't help. But I what I want to be on his journey is someone who was there for him as much as I could be and loved him and saw the good, and advocated and fought like a tiger when I could, and then sometimes let him go and do what he needed to do. And you know, anyway, so that's getting a little deep, but that's what this is for. And it's his journey. I don't know why. I don't know if he looks at his life and sees his friend, you know, sees his friends that you know don't have minimum wage job, although minimum wage isn't as bad as it used to be. You know, if he he never complains about his life.

unknown 35:51

I don't know.

SPEAKER_01 35:52

Nick doesn't even, you know, even in the hospital when he was so ill, he was always pleasant to everybody, and the nurses all loved him, and he, you know, always polite, always nice, never like the worst he would say he was literally on death's door. And I would say to him, Hey, how are you doing this morning? When I would come in, and he would go, the worst he would say is so-so, like when you knew he did so-so, he was dying, right? But he doesn't complain.

unknown 36:24

Wow.

SPEAKER_00 36:25

Oh, so Jim is the grylings complain. You heard you saw Angela, our daughter, when she was on the program, and your two daughters were you know being so nice and positive. And Angela said, No, I really I resent my brother at times, etc. So I will say that um Jim does complain sometimes. He he's not a big complainer. People love him wherever he goes, even though he thinks people don't like him. That's part of his paranoia. But he's very pleasant and kind to everybody. But he does, he's I I don't know if complain is the right word, but he's very wistful about the life he could have had. Yeah, I think complaining is compared to his to his current life. He's very wistful and he sees his cousins and he sees his sister, and now his his niece, our granddaughter, just started college, you know, last week. And he's like, wait, you know, I was when I was her age, I got sick, you know. That's when my life kind of stopped. So I I I don't see complaining about wistfulness. Well, but that's insight.

SPEAKER_01 37:29

Yeah. See, that's insight. You know, I try and get Nick to talk about just yesterday. We were spending the day, and I said to him, Nick, do you ever feel angry that this happened to you, that you got schizophrenia? Do you ever just feel like mad at the universe or something or anything like that? Because I I I'm not trying to put ideas in his head, but I want him to be able to talk about that. And he said, and this is a way different than anything he's ever said before. He said, Well, it's frustrating sometimes, and like that's a big step in terms of insight. Yeah, and and we talked about I talked to him a little bit about peer counselors and why that's so good because you're dealing with people who who understand the same thing. But I think there's a difference between being pleasant and trying so hard and and not complaining. I mean, I think being wistful or or I think that sort of complaining or that that's insight, that's being aware and seeing and understanding what's going on. I like that way to think about it. Yeah.

unknown 38:38

Yeah.

SPEAKER_00 38:38

So while we're being, I won't complain then, but I'm gonna say I'm wistful, Randy, that Ben is spending his money and he's spending it on clothes. Because um, Jim has a job too. It's another minimum wage job. Um, but he's currently spending some of his a lot of his spare money on um like toxic cleanses or some sort of supplement that he spends $75 a bottle on and that sort of thing. And I've got him to run them by um by his doctor so we know you know they're not harming him or ones that he stopped, but that's that's um taking up a lot of a lot of funds.

SPEAKER_02 39:25

Yeah, you know, it's funny. And I, you know, we're we're in a moment, I think we'll each end with a just lesson to take away from this catch-up, not quite out of the woods conversation. Um I'm I'm very glad my son's not buying pot. You know, they drug test him at his job so that, you know, again, they're inside this person is a frozen in time adolescent who it doesn't want to do what mommy says. So, you know, it's not about me. The less it's about me, the better. It's funny that he has dreams of having a car again and you know, saving for his own apartment, but he doesn't put money toward it. And that's a very juvenile way of thinking because of the cognitive impairment that remains even after you're stabilized. So I it's okay with me. I really don't want him driving. So that works for me. But you know, I don't go again, it's just sort of so I guess toxic cleanses are better than buying some of the stuff I know. Jim has had drugs.

SPEAKER_00 40:26

You you bet, yes, we've made some progress.

SPEAKER_02 40:30

But you know, but it, you know, as I always say, it is what it is, and we are where we are. I, you know, I we were all praying in every conceivable religion possible for Nick when he was in the we were like, whatever, whatever religion, we'll take it. Whatever prayers, you know. And you know what?

SPEAKER_01 40:47

Let me just say this from my farewell or ending thing is it was a weird thing for me because although, yes, I've written a book and I talk about this all the time, I'm not wildly public. And usually when I'm going through something like this, it wouldn't have been on Facebook. But what happened was it happened so fast, and we brought him to the hospital on a Wednesday, and it was then Saturday, and it was just going downhill so fast, and I realized, oh my god, I had not even talked to my brother, like I'd only talked to his sisters, and I thought, what am I gonna do? And I was at the hospital, and there was no time to really, and I thought, I can't bear all the phone calls because you know, then you call one relative, you better call the other ones, and so I thought I'll just post it on Facebook so people know what's happening because I also didn't think it was gonna be this bad, you know. I thought in a day or two I'll be posting who's fine and going home. So I'll just post it. So I posted it on Facebook, but I did it from my phone in the hospital, and I didn't realize when I do that, it automatically posts it also on Instagram, where I have thousands of people, and so it became wildly public. And I was a little caught off guard because it felt a little weird because then it got so bad and so scary, and it looked like you'd die. And meanwhile, strangers are, you know, calling me a writing. But I have to say, all said and done, I am so overwhelmed by the you know tsunami of love and good wishes and prayers and people thinking about him and and I mean, I couldn't believe it. Total strangers and following up and making sure, and I also firmly believe that that that you know well of good wishes or prayers or whatever you want to call it, I think it helped him. I really do. I believe it helped him, you know. And yesterday we went in and we were with some people that we know here in Washington who hadn't seen him in a while. And the my friend Annie, she, you know, there everybody was so happy to see him. And she said, Nick, can I just hug you? And you know, because Nick doesn't, yeah, you know, little sometimes fist bump or something. And he says, Yeah, and she just threw her arms around him. And I said to him afterwards in the car, I said, Do you see how happy everybody was so worried about you? People were so happy to see you and see you, okay? And he said something to the fact that, yeah, it really makes me feel good that people's people's concern for me that makes me feel really good. And that again is also a connectedness that he didn't used to have. And so I'm grateful for all of that, you know. As always, it's not without its wonderful gifts. I just wish that all these wonderful gifts didn't come at the cost of the quality of Nick's life, you know.

SPEAKER_00 43:43

Gotcha. And all that comes to you because you're open about his illness, you know. I feel so bad for families that that aren't able to talk about their family members' mental illness or they don't feel they have permission, or you know, many reasons why the family culture, but as soon as you do are able to talk about your family member, then then that sort of support comes forth. And that's so important. I believe in the power of prayer too.

SPEAKER_02 44:14

That's great. That sounds like your final word, right? Yes, so and I'll just say for mine, um, you know, what what has been reinforced for me in this conversation, besides how much I love you guys, is you know, just if you get a day where you get to make a good memory, just put that in your pocket and keep it like a you know, catch a falling star and put it in your pocket. Because if you have a time and a memory is good, then that that is a gift because no one's guaranteed anything. So enjoy the days of good memories, because as we well know with shoots and ladders, there will be other days. And the other thing is when you're able to focus on the strengths in your loved one, because this illness makes us focus so much on what's wrong and what we can't fix that there are still, I hope, some uh strengths that he or she can call on, combined with the right treatment and structure and purpose and love that can make their life better than you fear. Maybe not as good as you hope, but better than you fear. So focus on strength and good memories, and let's all send prayers for a cure one of these days. That's the case. And uh, so that's it. It's just us episode to catch up and just um I hope that you got maybe felt not so alone by hearing our stories. And I'll see you guys next week when we have Dr. Garrett Tside joining us.

SPEAKER_00 45:48

So I look forward to that one.

SPEAKER_02 45:52

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, 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.