Schizophrenia and the Family: Is There Hope Beyond Hidden Valley Road? (Ep. 25)

To end our first season with episode 25, we present the interview that started it all: Mimi and Randye interview Bob Kolker, and are joined by fellow activist/mom Laura Pogliano.

A conversation about #Schizophrenia and the Family: Is There Hope Beyond #HiddenValleyRoad? with Robert Kolker, Miriam Feldman, Randye Kaye, and Laura Pogliano. 
Kolker is a journalist and nonfiction author whose first book Lost Girls was a New York Times best-seller and was recently adapted for a Netflix film. This  book is Hidden Valley Road, an Oprah's Book Club selection and an instant #1 New YorkTimes best-seller about one family's struggle with mental illness.
Randye Kaye is author of Ben Behind His Voices, and creator of The Power of Kinship programs. She is also a noted voice talent, speaker and actor.
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 will be out on July 21st.
Laura Pogliano has been featured frequently in USA Today as mother & advocate for her late son Zaccaria. She is now the Maryland State Chapter Lead for SARDAA and focuses on family support and the reclassification of schizophrenia to Neurology. She is also on the Board of SARDAA.

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation?
We touch on:
Early Detection and Treatment
Need to fund and advance research and find a CURE
Four Pillars of Recovery
Stigma - is reducing stigma enough? (no!)
Schizophrenia as a brain condition, not a psychological issue
the sibling experience
Hidden Valley Road and the Galvin family
current disabled mental health system
need for education, NAMI Family-to-Family
...and more.

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Transcript

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SPEAKER_01 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 Griling, and Randy Kay. Hi, I'm Randy Kaye, and I am the author of And Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope. This is a special replay of what actually got Schizophrenia Three Moms in the Trenches started. It's when I first met Mimi Feldman and before I met Mindy Griling, but Mimi and I were honored to join another friend, Laura Pogliano, and have a conversation with Bob Culker, the author of Hidden Valley Road. Please join us in a replay of this conversation as we end season one of Schizophrenia, Three Moms in the Trenches. Season two, by the way, will start in about a week as we talk about crisis intervention training. So look for that episode. Episode 26, otherwise known as season two, episode one. Meanwhile, here's Mimi and Laura and me and Bob. Is there hope beyond Hidden Valley Road, a book I'm sure you've heard of by now, as the mom of a promising young man who developed schizophrenia and devastated our family, as any illness does. I know how important kinship was to my sanity. In fact, it was the only thing I could control as my son's sanity spun out of control. The goal of this conversation today, which is kind of about three moms with sons diagnosed with schizophrenia, and each of us raised our sons at about the same era. We're going to talk with best-selling author and research guru Robert Culker about his book, The Hidden Valley Road, which is Oprah Selection and the number one best-selling New York Times about the Galvin family. And we'll talk about how it is for us families in 2020, and really importantly, what needs to happen next in the field of schizophrenia. So uh today we're talking with Bob Culker, Robert Kulker, a journalist and nonfiction author. His first book, Lost Girls, was a New York Times bestseller and was recently adapted for a Netflix film. His new book is Hidden Valley Road, Oprah's Book Club Selection, and an instant number one New York Times bestseller, every author's dream about one family struggle with mental illness and what a family it was and is. Miriam Feldman is an artist, a writer, and the mother of an adult son with schizophrenia. And her book, Bob's I Ordered Yours, and it's coming tonight. So I read it ebook style, but I don't have a hard copy to hold up, but we'll put the this is Miriam's book. He came in with it, and it chronicles her family's story. And that will be out July 21st. This is my book, by the way. And Laura Pogliano, who I have met and uh lobbied with in person, is a training and education consultant in Baltimore. She was primary caregiver, caretaker of her son, Zachariah, Zach, who was also stricken with schizophrenia at age 17. Now Laura is the former director of Parents for Care. That's a nonprofit that provides practical supports and small grants to caregivers of those with mental illness and their families. And now the Maryland State chapter lead for Sarda, and she'll tell us about that. That focuses on family support and the reclassification of schizophrenia to neurology. And when we talk about call to action, I'm sure we'll get more into it. So I'd like to start. I've mentioned each of you, I've introduced each of you, but I want to give you a chance to give each of you the microphone and uh just tell a bit of your story. I'm sure we could each talk for an hour about our process. I'm gonna see if your internal timer, you can teach this is by way of introduction. Keep it to around two minutes of just a bit about your story. So I'm gonna start with you, Bob. I'm sure you've been interviewed like crazy since this book came out, and I've seen several of them. But for us, why this book? Why the interest in schizophrenia and anything else you'd like to tell us?

SPEAKER_03 4:13

Thank you very much, and I'm really glad to have a chance to talk about the family that I studied, but also to learn more about the experiences of everybody else here on the panel. Um, this was a family who had children during the baby boom, 12 children between 1945 and 1965. I first met them a few years ago when the youngest children in the family were in their 50s and they wanted the world to know about their story. Six of the 12 were diagnosed with schizophrenia. There were any number of tragedies that befell the family. And to answer your question of why this book, I I had several questions going into it. How could all of this happen to just one family? How did the family manage to stay together to the extent that it did? How did the well children get past the experiences of being in this family? And how how did the sick children turn out? And I really wanted to humanize them and not turn this into a monster movie or something sensationalistic. And then finally, there was the mystery of schizophrenia, which I found to be really an underground subject still, despite the many excellent memoirs and writings and books that I ended up reading on the subject. If you if you're not personally exposed to it, it's its own sort of corridor still. The stigma's a little better, it seems to me, but I'll learn more from you all during this conversation. But back then it was such an underground subject that the family really kept it quiet. Um I'll stop there for now and uh love to hear from the rest of you.

SPEAKER_01 5:45

Well, absolutely get more into it. Um let me go to uh Miriam. If you can, again, I know we could each talk for an hour, but a brief story of your son Nick, uh where he is now, and uh a bit about your book. I'm gonna unmute you. Go ahead.

SPEAKER_04 6:02

Well, you know, it started classically when he was a teenager. You know, if you made the list of serious red flags for serious mental illness, and you made the list of normal teenage behavior, you'd have virtually the same list. So you they all act crazy in those years. They're all mercurial and all over the place. And so in the first years, I didn't realize anything was different with Nick. But as the time went on and his friends seemed to grow out of it, and he got more and more problematic, we realized something else was going on. After his diagnosis, I realized I was alone in this. There was no help out there. I mean, there were some support groups and things like that, but schizophrenia, I always say it's like the bastard child of mental illness. It's the one that gets shoved really to the back of the attic where Auntie's living because it's a disease that presents often in an ugly form. You know, it can it can be violent, it can be nasty, it can be angry, it can be words being yelled, and nobody wants to look at this disease. So it's something that I that I think has also affected the treatment. But I educated myself, I advocated for him, I didn't give up. He's now 34, he lives in his own apartment nearby us, he has DHS workers who come once a day to give him his meds, and he's what they call a success story because he's not on the streets and he's not dead. But I personally, one of my big issues is that somehow the treatment seems to end there. As long as we mitigate them to where they're not a problem to society and um have a place where we can put them, we're done. And these are human beings who deserve to have a life and get better. It's like saying, We removed your leg because you had cancer, but we're not gonna give you any therapy or any physical therapy or a wheelchair or anything, we'll just put you in a chair in a room and you can live out the rest of your life. And it's wrong.

SPEAKER_01 8:09

Thank you. And uh, I know that you wrote a beautiful op-ed for Pete Early's blog about that, which I read and it was so powerful. You know, when I um present to psychiatrists and hospitals about the family experience, and often the person before me has a PhD and an MD and all kinds of things, and I just say Randy K MRQ, mother who refused to quit. Those are my letters and my badge of honor. So I I totally hear you. And Laura, um, I'd like you to tell a brief story of Zach and how well he was doing. I remember, I will just say, being envious of you because your son had insight into his illness and actually advocated with you for a period of time. You called yourself the fortunate mother on USA Today. That much I know. And I will tell you one other thing that sticks with me from knowing you is when you told me Zach said schizophrenia is a ripoff. So I would like you to share a bit about Zach and and how well he was doing until, well, you know, and I'll unmute you so you don't have to do that.

SPEAKER_02 9:15

Um, well, my son Zachariah was um a musician, accomplished musician, piano drums, uh, and extremely athletic, a million friends, um, a beautiful girlfriend, a loving home, never in trouble in his entire life, never sent to his room as a youngster, even. And in a weekend, he turned into the movie version of Howard Hughes. He was wrapping everything in plastic, he was frantic, he was hiding in closets, um, his bedroom was completely cleaned out, his living was contaminated, and and literally in two days, and that's the point that I want to help families with. What is happening to my child? Miriam just brought up a brilliant point about how the um normal teen behavior kind of intersects with some oddities, but my son flipped in a weekend. There was no denying something bad was happening. So we made the rounds of we got a GP, general practitioner, to look at him, then a psychologist, then a psychiatrist, and finally, especially a specialty person in psychiatry who said, You have a big problem. And then the journey started. But because my son was drastically ill at first, he understood that he was ill. And that insight um was a miracle to have all the way through his illness. Um, he never denied being sick, he always asked for a hospital if he was afraid or terrorized by hallucinations. But he's also a case of a child who had perfect care. He had every advantage at Johns Hopkins, and he was always, always allowed to stay long enough to stabilize. And I mean two to three months at a time.

SPEAKER_01 11:28

That is so, so rare. That is so rare. And I'm so glad you're getting your perspective on that. So if we can just, I know there's so much more to tell of the story, so we can just fast forward a minute and tell us briefly what happened after that.

SPEAKER_02 11:43

Well, the point is he had perfect care and he continued to decline. And he just got sicker and sicker. Some people don't. And at age 23, he died in his sleep of heart failure, cardiomegaly. So it's hard to talk about him without crying because he suffered, but I would say, you know, we run the gamut of outcomes, and they're all terrible. Early death, incarceration, homelessness, prison, and it shouldn't be this way. This is a treatable illness. So we all it has to improve, we have to do better.

SPEAKER_01 12:32

Thank you so much. And I uh I know from from our brief acquaintance that when Zach died, he was he had kind of begged you to have his own apartment and you let him do that. And I I I know uh Miriam been through that with Nick. I was with that through Ben. I think we all cleared cockroaches out of sinks and did any number of of uh motherly things as we could, but I we all walk that tightrope between any parent does, but especially when your child has an illness. And in in my case, Ben has no insight to this day. So you walk that tightrope between letting go and stepping in, always. How much is too much? When are the psychiatrists gonna call you a helicopter parent when really you're just buzzing in when you're needed? You're like an EMT parent, you're not really a helicopter parent. So we we walk that tightrope. And when Zach had his own apartment, you and I were messaging on Facebook and you went, I want to give him some space, and that's where he died. And that is was it medication related, do you think?

SPEAKER_02 13:44

Uh, you know, probably. The autopsy showed cardiomegaly, which is an enlarged heart, and there's a big connection between heart disease and schizophrenia. I explain it to my peers or other families, like when your brain doesn't work, neither do your other organs. And because the brain is when it's defective over time, it can affect every part of your body. And we don't recognize really the physical manifestations of a brain illness. Um, so I wanted him to, it was like his third or fourth launch, basically, um, into adulthood. So I wanted him to have that, and it didn't end well. But um, and I would say for the medicine, it's all we have. I don't begrudge it, it's all we've got. We just have to we have to do it better.

SPEAKER_01 14:35

Right. It's it's the wheelchair, stick him in a room for the person who lost a leg. It is stabilization is good enough. And so let's get into some of that. Oh, uh briefly, my story. I I forgot to tell mine. Uh my son Ben, not his real name, but he chose that name when he saw me write my book, is 38 years old. And my book came out in 2011. And at the end of the book, Ben is living in a group home after seven hospitalizations. And uh, you know, Bob, this will all sound very familiar to you from everything that the Galvins went through. So your typical promising teenager, a million friends, so popular, great big brother, and each of us have daughters as well. I will share that as the Galvins, their last two were daughters, and we'll talk about the sibling experience in a minute. But Ben started changing in high school, and I always tell audiences every teenager's a little bit mentally ill, because that's what a psychiatrist said to me once. And yes, you how do you tell the difference between, you know, your child's mood swings and early signs of schizophrenia? Unlike Zach, my son had gradual onset. It was like, well, this is weird. Well, that's weird. Like, whoa, that's really weird. We tried everything. Families try to normalize to fix it themselves, thinking we know what's happening. It mirrors a lot of other illnesses as it's coming on. It can look like bipolar, it can look like depression, it can look like OCD. Uh, Ben started changing at 15, dropped out at 16, sent to a troubled teen program out west, finally diagnosed at 18 after five months of homelessness and a near scare for being put in jail. He came home to us, diagnosis and medication roulette, finally the diagnosis, seven hospitalizations later. I wrote my book. At the end of the book, I say he's living in a group home, and I have to realize that parent is the most parenting's the most humbling experience ever. The best laid plans for our children, it's their life. So if you want to have a ballerina but your daughter's six foot two, not gonna happen. Take the extreme when your child gets an illness, and worse, a mental illness, I don't say worse, but specifically a mental illness in this case, certainly your hopes and dreams are dashed. At the end of the book, I say he may never work, and I have to accept that as a parent. It is what it is. My conclusion is you don't need a paycheck to be a worthwhile person. He's worth loving, he's worth knowing, his life is worth something. I am proud to say that eight years later, and another hospitalization and relapse later, my son is living with us now. It's not fun. It's like living with uh the invasion of the body snatchers, it's like living with a pod person. But because he has remained relatively stable on medication for these eight years, because either my husband or I stay up till midnight to make sure he takes it. I know, Miriam, you drove to your son's apartment to get, I'm so relate to both of your stories. Anyway, then got to the point where he was working, got off Social Security, working as a server in a restaurant, so good at it because he relearned surface relationship skills, so good at it that people went on Yelp to say what a great waiter they had. And that was amazing, right? Totally, totally amazing. Paid his own bills, leased a new car, but is meeting those bills somehow. So he's stable and beyond stable, he's working and paying his own bills, which is amazing. And then comes COVID-19. And to say we're concerned is an understatement, but that's where we are. And I was able to move on to advocating for better recovery through structure and purpose and love and treatment. And so that's where we are, a bit of my story. Bob, I'm gonna turn the microphone over to you because I asked if I want to know if you have any specific questions that you would like to ask us. And I think that will spark a lot of the topics that we agreed on in advance. So why don't you kick it off with a question for us?

SPEAKER_03 18:53

Thank you, Randy. And I and thank you, Laura and Miriam. This is really educational for me. There's a lot, of course, that I recognize from hearing about each of the experiences you folks have had. There's a lot of parallels with what the Galvin family experienced. And of course, it raises the question that Randy had going into this, which is what's changed between when the Galvans got sick in the late 60s and early 70s and now. And I think before I ask the start asking questions, I should just point out that what struck me in listening to you folks is what Lara said about how you can't begrudge the medicine because it's all you've got. Uh, what I was surprised to learn was that the medicines that we have now are essentially the same medicines we had several generations ago, the the 50s and 60s and 70s. The thorazine and clozepine are really the great grandparents of all the medicines that are available for schizophrenia now, for acute schizophrenia anyway. And there really has been no major innovation because of what three the three of you have all said in one way or another, which is that if you can give them the wheelchair and send them on their way, then that seems to be enough. And of course, it isn't enough, especially for the families who um are tied up in the lives of their loved ones. Um, that much hasn't changed. However, I do wonder if anything else has changed. I mean, when the Galvin boys were first getting sick, the parents had a choice. They could go to one half of the psychiatric community that was blaming them for creating the illness in their children, or they could go to the other half, which was really saw medication as a miracle cure and a panacea. It was still the early days there, and they thought, great, if we give them enough drugs, they don't have to stay in the mental hospital forever. And um, and neither alternative was helpful to them. Today, I sort of flick in the book at some new ideas like early intervention. And uh I wonder if the stigma might have lifted a little to allow people to get early help. And perhaps that's helpful. But I'll I'll leave I'll kick that over to to you folks to ask it were you personally stigmatized when this happened? Did anybody, a medical person or otherwise, start to ask you questions about your parenting style? And then also, did you feel an overall stigma about mental illness? And if so, how specifically?

SPEAKER_01 21:16

Okay, um I'll I'll start. Uh yes, there is less stigma, but there's a lot of old school people out there. I was given a lot of parenting advice. And actually, I was given a lot of incorrect advice, like, you know, I think your son just has ESP and it's making him stressed. I was also told if you would just leave him alone and get him his own apartment, he'll figure it out. I was also told, you're too close to him. Uh let him hit bottom and he'll figure it out. There's a lot of tough love. And listen, I bought into all of it because I didn't want the To be a mental illness. I believe so totally that early detection and early treatment, and science backs me up on this, will help some of the later symptoms. It doesn't cure it, but I believe that there is brain damage every time you go into psychosis. I also believe in the rewiring of the brain and neuroplasticity so that the longer you remain stable, you might re-approach a semblance of where you used to be. But there are limits to that. So I bought into everything. I got him his own apartment. I paid his rent. I made deals with him. I bribed him to take his medication. I let him go. I let him fall. I picked him up. I explained to the neighbors. I tried to comfort his sister when she saw her brother fall apart. I let him drop out. I ignored it when he didn't take a shower for six months. And then I stepped in and I saved him. And I had written contracts and I let him live with another family. And a lot of this was to answer the gee, is it my fault? And each of us have other children who are fine. And so we can't be though that terrible a mother. And I didn't hit a complete diagnosis like Mimi Galvin did, like it's totally your fault, you're a it's the motherhood problem. We were about 10 years past that, I think, but there were still old school people who had that in the back of their mind and wanted to try to fix it with talk therapy and suggestions about I could handle it. Now, I believe communication, even when someone's psychotic, the words you use are valuable, don't get me wrong. Educating myself, uh, in my case through NAMI's family to family course, which to me is the strongest part of NAMI for me, that I got educated, helped me to not make things worse, but I still was at a loss as to how to cure my son. Getting to a diagnosis and the fear of people not telling me what they think might be wrong was a huge part. So, yes, there was and is still stigma, relatives saying, you know, you guys are welcome to come for Thanksgiving, but don't bring then. And I don't blame them, but you know, there there is stigma and there's fear. So I believe that early detection would help, but I understand why people are reluctant to give that diagnosis. Um Miriam, you want to go next?

SPEAKER_04 24:34

Yes, I have strong feelings about stigma. I also managed by luck to stumble into the family-to-family uh it's a you know it's not a support group, it's an education, well, you ladies know it's an educational program. It teaches you all the different aspects of wrangling the circus of having a kid with serious mental illness, and it saved our lives, definitely. And I remember maybe the second meeting, and they started talking about stigma, and it was also new to me. I mean, mental illness had never even been on my radar. I spent 20 years raising four kids, obsessing about cancer, abductions, and car accidents. And out of left field came schizophrenia. And so I had to get up to speed fast. And you know, honestly, Bob, with stigma, it's just like when Rome is burning, you gotta attend to the fire. And for me, it was just, I just got over it really, really fast. Um, there just wasn't time. There just wasn't time I to worry about what other people thought or or um, you know, I did spend the requisite amount of time in denial and hiding things, but in terms of functioning, it just was superfluous. And now, honestly, I think that the whole mental health zeitgeist is focusing a little bit too much on stigma. I mean, I think it's important and we need to talk about it and all of that, but can we also talk about the fact that people with schizophrenia were basically better off in the United States 40 years ago than they are now? And Dr. Fuller, uh Dr. Fulator Torrey, that's who I'm quoting when I say that, that there hasn't been a new medication developed for schizophrenia in over 30 years when philozepine came out. I mean, it gets down to the nuts and bolts of money and funding and research. And, you know, stigma is important, and yes, it's important, but you know what? I don't think it's an applicable, as applicable an issue with schizophrenia. It's so serious a disease. It's just, I don't think any of us are sitting around worrying about what somebody's gonna think of us. And as far as the refrigerator mother thing, like you said, that was before us, a little bit before us. But I remember reading about that when I first was going into this and thinking, oh my god, can you imagine going through this, the not knowing and the fear and the terror, and then to be told it's your fault because you didn't the refrigerator mother was a term used for um for the mothers saying that schizophrenia was caused by us being cold and withdrawn and the child not getting enough love. And that's clearly, you know, was in existence with the Galvins. I can't imagine. I mean, it's such an impossible world to navigate anyway, and then to be blamed on top of it.

SPEAKER_01 27:29

So that's my so uh we're actually getting into some of our platforms here, which is great. And and I know, Miriam, that you advocate for that. Heck, let's find a cure for God's sake. Let's just stop stabilizing them. And psychiatric nurses I have spoken to and at at conventions have said we're as frustrated as the parents. We just get them stable and then they have to be kicked out the door, and we never get to see the people we saved because we, you know, we don't get to see who who's underneath there. So there's frustration all across the board. Laura.

SPEAKER_02 28:06

We we really don't care for people in this country who can't contribute to the economy, who can't pick themselves up by their bootstraps, who have to have assistance to live. We've proved it over and over. We treat them shabbily. And stigma is stigma is part of mental illness, but I would suggest it's really part of a lot of long-term chronic illnesses. It's not um reserved for mental illness. Having said that, stigma is not what keeps people from care in many cases. We don't have enough qualified professionals, we don't have hospital beds, we don't have prepared, professional, competent paths through treatment. If you get cancer, you have a treatment modality, and we have no standardized paths to health for these illnesses.

SPEAKER_03 29:13

There's a lot of talk these days that although we understand now that schizophrenia is a biological illness and not caused by bad parenting, there is a discussion about environmental triggers that might induce psychosis. And with the Galvin family, hindsight was always 20-20. Somebody would have a psychotic break, and then years later they would say, Oh, he had had his heart broken right before that, and that must have triggered his psychosis. And I wondered if when when each of you, when when your sons had the onset of illness, if you in your first interactions with with medical care said, I think it's because X happened, or I think it's because Y happened, do you did you have suspicions about the environment? The environment meaning the the family environment, you know, I mean the um any environment, you know, like he was in a car accident or he was in a he he knocked his he had a concussion a year earlier. You know, did did you start to search for triggers like that?

SPEAKER_04 30:11

I think I think um Miriam, why don't you go first and then I'll I'll put my well my before falling asleep activity for the last 15 years has been reliving every minute of Nick's life to try and figure out the moment the thing happened that caused it. But even with all that attention given to it, I'm I'm unable to find a specific event. I think that if I look back now, there's certainly things that I can see in retrospect. He had issues with he was he had a lot of anxiety when he was young, and anxiety seems to be a precursor to a lot of different mental illnesses. But again, not something really identifiable when a kid's 13 that it's leading to schizophrenia. But no, not one traumatic attempt, uh uh uh event. You know, we had a fairly normal family with its, you know, share of good and bad and you know problems, but um I I can't find something. I mean, I wish that I could, but I don't see a specific event. It was very much over time.

SPEAKER_00 31:20

Yeah.

SPEAKER_01 31:21

I I I think the explanation that rings true for me is that it's sort of a ticking time bomb in your brain that has a timetable when it's going to go off. Like they say that Alzheimer's is there in the brain and just waits until age. And yet, when I taught family to family, I learned the concept of the second hit that stress does have an effect. It was nature versus nurture. We all think about that. In my son's case, of course, I worried, oh my God, did I change the cat litter while I was pregnant? Did I cause this? Did I have the flu? You know, we always wonder what we could have done differently, no matter what. When my kids were nearly three and six, their father abandoned the family and was missing for 17 years, which is a big psychological hit, obviously. And I wonder for any anxiety he showed as a kid, of course, you want the most normal, fixable explanation that you can find. So I focused on that. We got him a big brother, we got him child psychology. They each dealt with it in their own ways, and maybe that was the second hit. This is why I wonder with my son, and again, my four pillars of recovery, and I use it only in the way that the alcoholic movement uses it, that's like fairly positive stabilization is structure, which helps us all, purpose, which helps us all, love or community, which helps us all, and treatment. And so for my son, he could have all the treatment in the world, but those other three pillars still matter. So for me, his fragile existence of feeling like he has a semblance of a normal life. Is he married? No. Does he have kids? No. Kids he went to Hebrew school with are doctors and dentists and lawyers and their fathers, and that was all stolen from him. As Zachariah said, schizophrenia is a ripoff. However, to be a waiter was a dream of his. Sure, he was gonna be a lawyer, but he I'm I'm proud that he's able to do that. But he is affected by stress. He invited a roommate to live with us for a while. This isn't in the book, it's in my blog, as it happened after. And the roommate stole from him. And even though he was taking his medication, he got near to the point where he had to be hospitalized. This is why I worry so much about COVID-19, because he is trying to structure his own day without working 40 hours a week. And I live life like this even more than usual. So I do believe that there are things in our nurture that can affect perhaps the severity of the psychosis. I'm in the camp of this is a neurological illness. We need to cure it. And even lumping it in with bipolar, I know that's easy to do, but a thought disorder is different from a mood disorder. And I think uh attention must be paid, research dollars have to be spent because if the treatment piece falls, the rest of it for many people cannot maintain. And by treatment, I mean whatever works for you. So I think nurture plays a part, but I think it's an illness.

SPEAKER_03 34:44

Well I just want to say that I'm glad to hear you all answer this way because obviously I don't believe that that there's something, some smoking gun in the environment like cat litter. I just wondered to try to, I was trying to get a window into your experience as it was happening, whether you were looking for things like, well, he smoked a lot of pot, must that must have done it. You know, things like that.

SPEAKER_01 35:05

We look for it. I mean, my son smoked a lot of pot, but I understand for a lot of teenagers that's a reaction to what's happening in their brain, and it actually calms them down.

SPEAKER_03 35:15

You're self-soothing or self-medicating.

SPEAKER_01 35:18

Chicken or the egg. So, Laura, anything to add to this particular question?

SPEAKER_02 35:22

Well, for nature and nurture, um, definitely I looked at myself. I raised my both both children the same, and I couldn't understand how one turned out so badly, right? And it took a long time to get over that. The idea that I had, you know, real input into this illness. Um, but of course, over time I discovered it's anybody or everybody, it doesn't discriminate, it affects millionaires, billionaires and poor people and stressed people. And but to do a good job, you do need to educate yourself about the illness because they can't take any stress. The smallest stressor sometimes causes a hospitalization. So, how can you foster your child's best life? Right? And that takes skills that we don't naturally have as parents. So you education is key, listening to clinicians, talking with others, learning how to advocate, and also understanding the illness for your child's sake.

SPEAKER_01 36:38

Okay, I uh thank you, Laura. And you know, before there was a post on Facebook, they were asking for stories to present to Congress today. Um, Congresswoman Grace Napoleano's aide wanted to be have testimonies read at a hearing, and yours was very powerful about Zach and his experience in school. So I would love to read it. We don't have time, but uh people can follow you on Facebook, Laura Pogliano, and I'll put the links at the end, and you can see what happens, or Sarda, S-A-R-D-A-A. There are a lot of organizations, and I think we've definitely covered what you know what's more important, stigma. Uh, let me see. I I what I'd like to do, three things I want to touch on briefly, and and that is the experience of the siblings. If each of us could talk about our daughters and Bob, what you learned about the nine surviving Galvin siblings, because I think siblings are often overlooked as to what effect it has on them. Uh Bob, I want you if you if there's an unanswered question you want to ask that we can ask briefly, and then I just want to ask each of us if we could promote a call of action of what needs to happen now to save families and people suffering with schizophrenia, what would it do? So, question number one is the sibling experience. Uh, Miriam, can you speak about that for about a minute?

SPEAKER_04 38:15

It's devastating. Nick has three sisters, and um, what happens is you have one kid who's seriously ill and requiring all your attention, and the rest are kind of lost in the shuffle. Each kid had a each sister had a different experience of it, a different level of loss for the youngest one. She didn't feel the loss as acutely because she was so young when it started. This is kind of the only thing she ever knew, but she has much more of a problem with anxiety, and you know, I guess you would call it post-traumatic stress, dealing with the fallout from all of that, than say the oldest one who was already in college when it started. So each sibling is different, but what I would like to stress, because I don't see it often talked about, is it's acute. It is really difficult and traumatic and a big deal for the siblings. And if I could do, oh I could do a million things differently, but one thing for sure is I would have somehow found a way to get them the attention and the help that they needed during the time that everything was going crazy because they're you know, they're adult women now and they're all three fine, but they're all dealing with the fallout from it, and there was only so much of me, and that was used to just mitigate damage. And um, so I think that there needs to be more um auxiliary support for the mom and the household because the siblings need help too.

SPEAKER_01 39:51

Thank you. I I will echo those sentiments. I I have two stepchildren, but they weren't that affected by it. They live in England and we we see them virtually more often than in person, but they do worry about their own children. It you did the genes come from they all come from the same father, so there's fear. Once you see it happening to someone you love, there there is a fear in the back of your mind. I remember my daughter, who is three years younger than her brother, saying, you know, I I was afraid of him. I was embarrassed by him when I drove up and he was led away in handcuffs. I I sobbed. But mom, I was really happy when you sent him to the troubled teen camp because then you got to focus on me. So I think that's something I did right, I think. You never know. But she says, I feel like I lost my big brother and I got back a little brother. And I'll take it because it's been worse. She hasn't read my book. If he's I hope it never happens again, but if he goes in the hospital, she can't visit him, it's just too painful. And what's what happens when my husband and I are no longer here? I'll just plant that seed. That's a worry for all of those. Laura, in about a minute, can you sum up for you?

SPEAKER_02 41:14

Well, one thing that I did not realize was that my daughter was carrying a lot of guilt, survivor guilt, but also why did he get sick and not me? I understood from this illness that I was gonna have to work really, really hard to make Leah feel special all the time. And one day she said to me, you know, all you talk about is mental illness. And I blurted out, Well, that's all I care about, and just the look, and it's true, but just the looking on her face, I never did that again. And so we're not the only ones who lose a person. And the siblings often live in chaos, but they also wonder why did he get picked out for this terrible suffering? And I'm fine. So, yes, sibling support needs to be wrapped right into the whole family to understand and deal with this chaos as best as possible.

SPEAKER_01 42:17

Thank you. And Bob, that is certainly reflected in your book as well. You spoke to Mary slash Lindsay a great deal and Margaret as well. And there are other brothers who are well and three surviving with the illness. Uh, Bob, was there anything that burning question that you that you left unasked, or should we move on to calls of action?

SPEAKER_03 42:37

I I would love to hear about your calls of action, and but I'll also say that the echoes in in the book in Hidden Valley Road are really, really acute. It uh everything you're talking about, both your experience as parents and what the siblings experienced are their similarities to the Galvin family. And that the challenge in the book was to get everybody's point of view, to get the mother's point of view and the children's point of view. The children do start off feeling forsaken, the well children do, and feeling critical of their parents, but then they get new perspective as they get older. And so I was glad to be able to try to provide that kind of complexity to this very difficult issue.

SPEAKER_01 43:17

Yes, and you know, I I personally thank you for that. I love how in the book you present everybody's point of view, plus the research and the facts, and and that's very valuable. Um I would say if I had one call to action, it would be to see somebody with schizophrenia as a person with an illness and realize they are a whole person, and like any person, they need structure and purpose and community of some sort and treatment because unlike other illnesses, they often don't have insight. My son, every night, tries to spit his meds out, cheek them, uh cover his mouth, and cough them into his arms. And they're liquid. I mean, it's like he, I call it my one uncomfortable moment of the day because when the meds are down him, I'm like, we bought another 24 hours. That's exactly how it feels. But my husband and I can't go on vacation. We don't go to bed at the same time. There's there's a lot to it that, you know, if he were paralyzed in a wheelchair, we would support him too. But I think those four pillars all need attention and research needs to happen for early detection and finding a cure. And one of the reasons I wrote my memoir is for healthcare providers to understand by the time you meet the families, it seems like the parents are crazy, but we're not. We're just at our wit's end. And if you have an idea of what we have gone through before we were able to knock on your door and ask for your help, I hope that you will include the family as much as possible in the treatment, in the information, and in the diagnosis. Respect for the family is huge. Uh, Laura, you're unmuted, so why don't you say your one call to action?

SPEAKER_02 45:13

My one call to action. Um, despite all the things that we need, which are enormous, it's a really, really long list of things that need to change, but we have to have better research. We have to fund this the same way than any other chronic terminal illness. Um it.

SPEAKER_01 45:41

Okay, we got most of that. It was a little choppy, but we got most of it, and I'll put it in the transcript. Thank you, Miriam.

SPEAKER_04 45:48

Well, I'm gonna focus on one other little aspect because not a little huge, because you two have really covered a lot of what I would have said. I think there's something else that bears uh looking at and always remembering, and that's it. We're all of us the lucky ones. Um, we're educated, we have means. Like you said, Laura, your son got perfect treatment, and it still didn't make a difference to the outcome. And so here we are in this position of, I guess the term these days is privilege, but we do, we have that. You know, I used to drive in the street and see the crazy guy on the corner screaming, covered in dirt, and and think, how could his family let this happen? You know, he's somebody's son, he's somebody's brother. How could, and now I understand. And the thing is, the vast majority of families dealing with the exactly the same circumstances as we have, don't even come near to having the resources that we have. And the prisons and the streets have become the de facto mental health facilities. We've disassembled what used to be a mental health system and didn't replace it with anything else. And we need to take into consideration these tens of thousands and thousands of families and individuals with schizophrenia who who the idea of treatment is so far beyond anything that they could attain. And look at us and how we struggle with the situation. Here we are, three moms. One, her son is tragically gone, the other two, our lives are difficult and mitigated by this disease, and yet we're all success stories compared to the other ones. And I think that we need to make provisions in our policy and changes in our laws that make care for the severely mentally ill available for everybody, not just rich people.

SPEAKER_01 47:55

Thank you. So so far we have early detection, more money for research, more respect and care for the family, and a big picture of the problem, and certainly political leadership is involved, science is involved, caregivers are involved. Bob, anything to add to that, and then we'll we'll have you each say how we can get in touch with you, Bob?

SPEAKER_03 48:19

I think the research part of it, I'd like just to put a finer point on it. The pharmaceutical industry, um, first of all, isn't isn't uh being motivated enough by um by people with the illness because they quite often can't advocate for themselves and families do what they can, but it's not like breast cancer or prostate cancer or even Alzheimer's or autism. The stigma still exists, and so it's still harder to break out and really put pressure on pharmaceutical companies. Also, rats don't get schizophrenia, so you have to try drugs on humans, and that's expensive and risky, so that's even less of an impetus for them. And so it's a very tricky situation. And then finally, so many of our mental illness drugs, even the best ones, were developed by accident, and and uh they were developed for something else. And and so it's um in a way not so surprising that that there hasn't been a huge innovation for schizophrenia given those three factors, and it's just troubling to me. And I think uh I'd love to be able to raise the alarm about that.

SPEAKER_01 49:26

Thank you so much. That perspective is uh in your book and important to remember. One of the biggest problems is you're right, my son won't advocate. He's not gonna go, he's not gonna go to a job and say, hey, I have schizophrenia. These are the uh these are the changes you need to make so we can work together. He doesn't even want to admit it. And I'll just leave it at that because we have so that we've covered so much. And so, Bob Colker, your book is Hidden Valley Road. I think people know how they can get it, but do you want to add anything about a plug for anything, how we can get in touch with you? Obviously, you can buy the book on Amazon. It was on back order when I ordered it, but anything you want to add about how people can contact you or get in touch with you?

SPEAKER_03 50:13

I have a website, robertkulker.com, and there's a way to reach me there. I'm I'm delighted to continue a dialogue in any way possible.

SPEAKER_01 50:21

Thank you so much, Laura.

SPEAKER_02 50:25

I um have I'm available on Facebook. I'm available through Sarda, the organization.

SPEAKER_01 50:32

Can you smell that so people have S-A-R?

SPEAKER_02 50:35

S-A-R-D-A-A. And I would like everyone to buy Robert's book, Mimi's book, Miriam's book, and Randy's book. They have been amazing stories, and you will understand the illness so much better by reading these three books.

SPEAKER_01 50:56

Thank you so much. Miriam, I'll hold up your book while you talk. I got my book. I'll hold it.

SPEAKER_04 51:03

So this is my book, and it comes out on July 21st. And just so you know, because it's an interesting little tidbit, the cover is a self-portrait that Nick did when he was 16. This is how talented an artist he was. And um, you can see it's kind of a prescient picture. He looks a little concerned there, so that's what we use. And you can find me at Miriam Feldman.com or on my uh publisher's website, the Turner Publishing in Nashville.

SPEAKER_01 51:34

Thank you. And I'm Randy K. I'm also a speaker and an actor, so you can go to randyk.com, r-a-n-d-y-e-k-a-y-e.com. But my book has its own website, Ben Behind His Voices.com, and there you can find the blog about how Ben is doing now. And uh you can also uh like my Facebook page. My profile has all pictures of my grandchildren, so I don't think you want that. But the page, you have to just look for Randy K official, and uh you can get on there. And um, Bob, thank you so much for joining us. Laura, Miriam, three moms talking to Bob Culker. Let's see what we can do to make things better for those with schizophrenia and their families. And thank you for joining us. 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 MiriamHyphenfeldman.com, mindygryling.com, or randyk.com.