Our Interview with Robert Kolker, Author of Oprah Book Club Book, Hidden Valley Road

If you’re subscribed to our email list, then you may have noticed that we’ve started sharing some of our “favorite things” lately. Our recommendations range from hair products, TV series, beverages, and of course, books we’re enjoying. 

In our June newsletter we featured Robert Kolker’s, Hidden Valley Road. We stumbled upon it when it was featured as Oprah’s Book Club read of the month, and simply put – we fell in love with the rich storytelling included in this non-fiction book.

This book is an in-depth account of severe mental illness through the lens of a family with 12 children, 6 of whom developed schizophrenia. It explores the history of beliefs about causes and treatment from Freud and Jung to current day research. But more than this it shows how changes and developments over time affect those living with this illness on a deeply personal level. It is a story of incredible strength and resilience about the Galvin family and through this book, they have given us a great gift in sharing their lives and family story with us.

Earlier this month we had the amazing opportunity to interview Robert himself! It was a reflective conversation about the world of mental health, the Galvin family, the areas where support has improved for families caring for loved ones with SMI and the areas that are seemingly unchanged.

To listen and view our interview, checkout the recording on our YouTube Channel. A full transcription of our conversation is also below! Enjoy, share with friends and family, and shoot us a comment or email to let us know what you thought.

Memorable Soundbites

[30:16] Why Robert decided to write this book

[38:10] Advocacy and what we should be petitioning for more of

[52:18] The difference Crisis Intervention Training makes in Police Departments

Guest Bio

Robert Kolker is the author of  Hidden Valley Road, an instant #1 New York Times best-seller published by Doubleday in April 2020.   He is also the author of the best-seller LOST GIRLS, named one of the New York Times 100 Notable Books and one of Publishers Weekly’s Top Ten Books of 2014. As a journalist, his work has appeared in New York magazine, Bloomberg Businessweek, The New York Times Magazine, Wired, GQ, Oprah and Men’s Journal. He is a recipient of the Harry Frank Guggenheim 2011 Excellence in Criminal Justice Reporting Award from the John Jay College of Criminal Justice in New York.  He lives in Brooklyn with his family.

Links to Source

View our interview with Robert on our YouTube Channel

Purchase Hidden Valley Road on Amazon

Visit Robert Kolker’s Site

Full Transcript of our Interview

Shannon Harris:

Thanks so much for agreeing to meet with us and answer some questions that we have about your book, we’re super excited.  

Rayetta Michael:

I just have to say I’m really nervous.

Stacy Derrick:

Me too, I’m nervous, too.

Rayetta Michael:

I was all excited about meeting and getting to know you and doing the interview and just really, really honored, and then the idea that we’re recording it is just …

Bob Kolker:

Well, I definitely showered.

Stacy Derrick:

I showered, too, yay.

Rayetta Michael:

Wait, and put on pants.

Stacy Derrick:

And put on pants, this is true. I have definitely not been wearing pants every day.

Bob Kolker:

I’ve been doing a lot of book events where it’s me in conversation with one other person, so I’m accustomed to it, but it’s nice, even if this goes up on the website, it’s clear that it’s a conversation, we’re not on stage really, necessarily. Tell me more about Help in the Home, before we get into the book, I’d just love to get a little background on your group.

Rayetta Michael:

Stacy and I worked together for six years in a psychiatric residential PRP. We work very, very well together. And then, in 2008, whenever there were some big changes going on, we had people that we worked with that were very near and dear to us that didn’t have a place to go because their program was being shut down, and that really was the birth of Help in the Home. We became the bookends to provide more support and also less support for people that couldn’t get their needs met in your standard psychiatric residential treatment program. So, Stacy and I have been life partners, we see each other more than we see our husbands and families, since we started Help in the Home a little more than 12 years ago, in 2008. But we support people that have severe mental illness, so schizophrenia, very much like the Galvin brothers.

Bob Kolker:

It’s a great space that you guys occupy because I guess what most people understand about this is that you go from jail to home, from jail to home, or jail to home to the street, to jail to home to the street, and that, for many people, there are fewer options. But since the book came out, when I talk to doctors and other people in healthcare, they say that there is more of an emphasis on supporting families than there used to be, and that sounds like part of what you’re doing is understanding that it’s not just about the patient, it’s about an environment that actually stabilizes everything for everyone.

Stacy Derrick:

I do feel like, with the majority of our clients, if they were not with us in our community, they would be in jail or on the streets. That’s something that very clearly, and we even have some clients where that’s been the discussion, where they’re like, “Well, I don’t know if I want to take my medication or do this,” and so it really is, “Okay. Would you rather be on the streets? Do you want to be with us?” We actually have one guy that very clearly was like, “I choose you over the streets,” and we’re like, “We’re so happy to hear that.”

Rayetta Michael:

And the other piece is, as care coordinators, we really are doing what Mimi did and what Lindsay was doing. We’re stepping in to relieve the families from that just what has to be done all the time. And we can have connections. It’s interesting how the treatment providers will often communicate with us in different ways with the families, and we can be heard and be advocates in that way.

Stacy Derrick:

I think that’s a big piece…the advocacy and the teaming piece that we can do to really work with people, just so families aren’t on their own. Even if there is perhaps a client who is more resistant, we can still support the family so they’re just not by themselves.

Bob Kolker:

That’s great. That’s amazing, and much needed, I’m sure. Is there a residential piece of your program? Is there housing for folks?

Rayetta Michael:

I have something here. It’s one of our little handouts.

Bob Kolker:

Yeah, there it is. Individual support and living community, okay.

Rayetta Michael:

We have a supported living community. So it’s broken up into the two pieces and everyone in the supported living community gets individual support, plus more. They have a community manager that’s there with them, 24/7. I love our SLC because it’s very much like an extended family, with ages across … our youngest has been 18, our oldest right now is 72. Just a group of 10 people that are there now; the most we’ve had is 15. So, it’s just a small, intimate group of people. The community managers build relationships with them, but also between them.

Bob Kolker:

And most of those 10 people, are they not aware that they’re sick? Or are they self-aware?

Rayetta Michael:

It runs the gamut.

Stacy Derrick:

That’s a great question because we really get some of all of the different types, some people who know, some people who don’t.

Rayetta Michael:

Some people who work full-time after finishing their bachelor’s degree and are still struggling with insight, wanting to go off of meds and wondering, “how do I accept this”, but able to live with us and do very, very well. And, others, it’s a good day if they’re able to get up and come down and join us to help make dinner.

Stacy Derrick:

But even thinking about some of our guys who have very little insight, I feel like a huge piece of our success with them is the relationships that we’re able to build. I’m thinking about one guy who’s always wanting to come off his meds, and it’s constant, even though he’s not seeing the concern, he knows we’re looking out for his best interest. He’ll hear us when we’re like, “Whoa. The fact that you’ve barricaded yourself from the door in your bedroom and don’t want to let people in, that’s concerning to us, even though you don’t think it is. Maybe we need to reach out to your psychiatrist, see what we can do.” So, even if he’s not seeing that as an issue, he’s able to recognize we really care about him. And so I think that’s a big piece of it, too.

Bob Kolker:

That’s great that he knows there are constant people in his life.

You’re making me think of Matthew Galvin. Recently, his health has failed, so he’s in assisted living, but for more than 30 years he was in Section 8 housing, living independently. And, late in the game, working on this book, I got a big stack of healthcare records from him, and they basically every visit was the same. He’d show up every month at the same place, he would never skip an appointment.

Some of the appointments, he’d be grumpy, some he’d be grouchy, some he’d be okay. At the end of every appointment, he’d say, “I don’t think I need to keep taking my meds,” and the doctor would say, “Actually, I think you should,” and then he would take his meds and then that would be it. So, week after week after week, he had that going. Not exactly self-aware, but not non-compliant either, which is fascinating to me.

The other thing I thought of when listening to you guys talk was, when I first started working on trying to reconstruct the past events with this family, one thing that I learned early was that there was a moment when a bunch of doctors were at a family meeting with both Mimi and her husband and they basically suggested that the parents were the problem and that it was really tough for them. But as I looked into it, I realized that that happened a little later, that was 1970, ’71, ’72, and that the first big hospitalization for the family was 1970, with Donald.

And things were bad with him for many years before that. His first issues at college were more like 1965. So, there was five years that they were really surfing a wave of desperation, not sure what to do. Do they just send their son to an institution and walk away? Do they take him home? Do they try to keep him in college? You see them, in the book, desperately shopping for a medical opinion that would be favorable to Donald so that his whole life isn’t ruined and that he continues to have an education.

But I whipped all that together and then looked at the first draft, and one thing a friend of mine who read the first draft said was, “What were the family’s options? What was really available to them in 1965?” And that began a period of harder work for me, where I was really trying to help readers understand exactly what the deal was if something like this was happening to your son. And, to me, it was enormously complicated.

First of all, he wasn’t a child, he was over 18; he was living in college, not at home. Part of them must have thought, “Well, it’s time for him to leave the nest and learn to make it on his own,” so when they have these problems pop up, they aren’t sure how much they really need to get involved. And then, secondly, I learned, of course, about the schizophrenogenic mother and how it had been many, many years since that idea came up and it had really taken hold in a great deal of psychotherapy.

I later learned, and this was very valuable, that Denver was a hotbed of that kind of psychotherapeutic thinking, the same kind of approaches that were at Chestnut Lodge, which I wrote a lot about earlier in the book. So, if they were to go to the psychoanalytic route, they would have run straight into that issue, so that really wasn’t much of an option for them. And then I looked into Pueblo, to the state hospital, which was coming out of a really crummy period, the early ’60s, there was a huge scandal for them, they had this big report that was front-page news about all these horrible things happening there.

Plus, by the late ’60s, state hospitals like Pueblo were all downsizing because of the Kennedy legislation, so the current thinking was, “Let’s shrink these hospitals and not put people away,” so that was happening. And then, finally, there was their own personal situation, the family still had healthcare coverage because Don was military and Donald was a college student, so, luckily, they could turn to some healthcare resources. But they were not wealthy, and places like the Menninger Clinic were not available to them.

And, also, not only were they not wealthy, they also had 12 children and one income. So, job one was maintaining that one income, and that one income happened to be a very prestigious job where Don was getting more politically connected and traveling more, and really couldn’t tell everybody at work who he ran into that he was having this problem at home. So, the stigma and the secrecy and the shame all bundled up together so they couldn’t even get any help. And so by the time I got all those factors together, suddenly I got this very clear picture of what life must have been like from 1965 to 1970.

I guess for the purposes of our conversation, that’s where I think there’s been the most change since the late ’60s. There are organizations like yours, and there’s a knowledge that families need support, as well as patients. And, also, there’s a knowledge of early intervention, which I talk a little bit about in the book. Everybody, these days, who I talk to, maybe it’s because there’s so little hope on the pharmaceutical side or on the genetic side, they all say, “There’s hope on the early intervention side. If we can help a 15-year-old, then maybe by the time they’re 25, maybe they’ll have had a couple psychotic breaks and not 25 psychotic breaks and things will be better.”

I kind of ran around a lot in that, but I thought it might be interesting just to mention that none of this was obvious when I was starting. I was talking to the two sisters who were the youngest in the family and have no memory of the late ’60s. And their mother, who was 90 when I talked to her, but she was going to talk in generalities about things, but we weren’t going to do a deep dive into it. And so it took a lot of detective work, and archival work through medical records and such, and with friends of the family, and talking to a million people to try to stitch together a sense of what was happening when things were coming undone for this family.

Rayetta Michael:

So, the work that you did behind the scenes and how you’ve pieced everything together is just amazing. I’m really glad that you did go into explaining part of that process, that was one of the questions that I wanted to ask you was just how did you do this? Because it’s just clear how in-depth you’ve really looked up so many things in the book.

Bob Kolker:

I’m glad to hear that. I went into this knowing that everyone in the family was ready to talk about it. I took a year of on-and-off talking on the phone with everybody who I could, including Matthew, Peter and Donald. I met Peter later, but Matthew I was on the phone with, just to feel them out and make sure that they were okay with the idea of this because there are medical privacy laws, and I didn’t want to get a book deal based on the sisters wanting a book and then suddenly a brother standing up and saying, “No way. I don’t want a book about this.” And, also, I had a full-time job, it’s not like I needed to start right away anyway.

So, over the course of a year, I was in touch with them and really building up understanding with everyone. So, I knew I had that. I said, “Well, even if I can’t find a single medical record, I have the family to talk to, and that’s a lot. And I also have the medical researchers to talk to, Dr. DeLisi and Dr. Freedman.” So, the worst-case scenario would be that it would be a book that would be really heavily weighted toward personal remembrances of the family and scientific information from talking to researchers.

And the best-case is that I would find amazing medical records that really told amazing stories. And I did find some of that, but you’ll see I tap-dance around some of the brothers. How wonderful would it have been to have had more medical records on Jim, for instance, who is such a mess and so destructive, and yet stayed married for more than 10 years?

The real struggle for me was trying to get a sense of what … I kept asking people who knew them or remembered them, “What was it like to hang out on a Friday night at Jim and his wife, Kathy’s, house? Was Jim stable? Was he unstable? Was he hitting his wife in front of people? Were they charming and putting up a front? Were they never around each other? Did he just come and go as he pleased?”

It was very, very hard for me to rebuild that period because nobody wanted to talk about it and nobody remembered the family, and his ex-wife didn’t have much to offer really; she was very helpful in some ways, but not in that way. So, I leaned on what I could find, which is a lot of material on Donald and Peter and some on Matthew.

Rayetta Michael:

Right. But what you did share about Jim and Kathy, I was impressed with how you honored Kathy’s strength through all of that. And you spoke from her heart of the reasons that she stayed with him and struggling, and then the reason that she did leave him was what we hear from so many women, it was whenever he first hit her son, and that’s when she did leave him, and then it was all downhill for him after that. That’s one thing that Shannon and I were talking about is how you really give dignity to women that can often be stigmatized. Can you talk a little bit more about that?

Bob Kolker:

Yeah, sure. I hadn’t thought about it with regard to Kathy, but it’s true. I think that the pivot for her, early on, the way that she put it was, “Yes, he hit me and he drank all the time, but, at the same time, he was really hurting himself. He was jumping into lakes and hitting his head against walls,” and so part of me pitied him, felt sorry for him. And it made me wonder if he was able to get outpatient help at Pike’s Peak for a number of years, like an injectable or something like that, if maybe she didn’t just decide for a number of years there that his big problem was alcohol and that the mental health thing was under control and we could put that in the background. Of course, she didn’t know about the sexual abuse that was going on.

But, with Mimi, I thought about it a lot because, forgetting for the moment about the whole schizophrenogenic mother idea, I do feel like mothers really take it on the chin in family stories, both fiction and non-fiction. There’s a lot of, “Well, clearly the mother did a number on that kid,” and they become the solution of the mystery, “The reasons why things were so messed up is because of the mother,” and I was very wary of that. And what I found in talking to the sisters and with Michael and Richard and John, and Mark too actually, all of the mentally-well siblings, was that they grew up very critical of their mother, but then in middle age, once they had families of their own, they started to see her with new eyes.

And so I thought how great would it be to be able to tell that story over many, many years? To have a part one that’s perhaps a little hard on Mimi, and a part two where you start to grow up with the children and have a little more perspective about her. And then also see a lot of people deal differently with her. I mean Lindsay forgives her and ministers to her minute to minute before she dies. Margaret reaches a moment of peace with her mother, but maintains a distance. I mean she’s there for many, many days, caring for her mother, but she doesn’t feel a need to be there all the time, and she still feels a little more of an outsider.

And it’s also extraordinarily complex because they could have spent their whole lives being upset that Mimi cared more for the sick children than she did for the well children, but they both did a tremendous amount of work on themselves to try to get to a place where they could recognize what was good about her. And then she, of course, had science on her side; by the end, it’s clear that she’s a hero for having kept the family together at all, or else the family never would have been studied, everybody would have been cast to the winds because once her husband got sick, it was on her to keep them all together. So, she’s enormously complex, and I enjoy that kind of complexity. I don’t like writing books about bad guys and good guys.

My previous book is a serial killer book, and there’s no serial killer in it, so even he gets ignored. He’s obviously a bad guy, but I barely even mention him in the book; I’m talking about everybody else and how complicated they are. So, that’s a little where I come from. And even I was amazed by the complexity here because, in the beginning, when I was on the phone with Lindsay and Margaret, I thought that this was going to be a story about two sisters who helped each other overcome the difficulties of their family and became each other’s greatest salvation.

But then I met with them personally, once I got the book deal, I started taking more trips to Colorado and I met with them separately, I had thought that Margaret, since she was talking more on the phone, I thought she was the most involved in the family story, and because Lindsay was quieter on the phone, I thought that she was being dragged into this. And what I learned, meeting with them personally, was that Margaret actually had been setting up lots of distance between herself and the family, and Lindsay was involved in it 24/7, and I learned that the two of them clashed a lot and didn’t have a lot in common about the way they dealt with the family, and I thought, “Uh-oh.”

And then a day or two went by and I sat on it and I said, “No, actually, this is better because we all have families like this, where kids deal differently with their family issues,” it’s relatable beyond schizophrenia, beyond the particulars of this family.” I experienced my parents very differently from how my brother and sister do; although, I guess there’s some overlap. But, anyway, I thought, “Well, good, it’ll be complicated. Let’s make it complicated.”

Shannon Harris:

So, that actually leads me into another question about how this book came to you because I’m admittedly a true crime fan girl, so I was actually introduced to you for the first time through an article that you wrote about The Last Stone, about the Lyon sisters. I live in Silver Spring, so Wheaton plaza is right down the street from me.  I devoured that book, it was so good. And then I went back, after reading Hidden Valley Road and read Lost Girls, and I’m like, “Wow,” and that incredible tie that Rayetta mentioned between how you give such life to these women who are very stigmatized. But it leads to the question of how do you go from writing this true crime book to this book about schizophrenia? Is it something that you chose or something that came to you? I’d love to know more about that.

Bob Kolker:

Sometimes, I and other writers reverse-engineer a book, thinking, “I want to write about gun control, so I’m going to find a family that’s been affected by gun violence and then write the family story.” But this was not the case here, I did not decide to write about schizophrenia. My editor, a long-time editor of mine at New York Magazine, went to Hotchkiss with Lindsay, and they actually were boyfriend and girlfriend at Hotchkiss. And then he stayed in touch with the family over the years and met Margaret, too. And so while Lindsay wasn’t inclined to tell anybody at Hotchkiss about her family, over the years, he got the gist.

And then, one day, five years ago, she came through New York with Kate, who is in the ending of the book, her daughter. I think it was when Dr. Freedman was being celebrated for choline at a conference in New York, so it was 2016 or so. And Lindsay said, “My sister has been thinking for decades about trying to write a memoir, and she and I have talked about trying to write something together, and, finally, we both have decided it’s too big to be a memoir. Do you know of any journalists who’d be interested in it?”

He edited the magazine story that became Lost Girls, and he and I are really close, so he knew that my thing was writing about ordinary people who are caught up in something extraordinary, and writing dramatically and vividly and sensitively and non-judgmentally about people caught up in something really tough, so he thought I would be a good match for it, and he put us together on the phone.

I did a conference call with Margaret and Lindsay, and then I got back to John and I said, “Well, this is enormous. This is sexual abuse and it’s clergy abuse, and it’s schizophrenia, and it’s two sisters, and it’s research, and it’s that. And who knows if any of the brothers really want to be interviewed? What if they were just a way of starting a science story, a feature story for a magazine, like The Times magazine or something about a rare test case about schizophrenia, and then really interview the researchers and make that the story?”

And he said to me, “You could do that,” but he said, “I just think this is so big that you can just do a book. Just write a book about it all, just write about it all. If the question is, “Should I write about this?” The answer is yes. Do it all, have it all in there,” and so I kept that in mind as I went forward, too.

I’m from Columbia, Maryland, by the way. My whole family is from Baltimore, and Silver Spring is where we got our high school paper printed. I would drive the flats down to the printer in Silver Spring and give it to them, and then, the next day, the paper would magically appear. But my mother, she was a psychiatric assistant at Howard County General Hospital for a long time, but her training, when she got a Master’s in Counseling Psychology, she went to … and now I just lost the name of it.

It was not Chestnut Lodge, it was a more traditional facility where she was doing rounds. And she would come back from that with a white lab coat and with a bunch of keys. I remember asking about the keys and she’s like, “Well, it’s a locked ward, you got to open one door and close another,” and that was pretty surprising to me that my mother was involved in something like that. Sheppard Pratt, is that right? No.

Rayetta Michael:

Sheppard Pratt’s in Baltimore.

Bob Kolker:

Yeah, so she did all her training in Baltimore. We’re really a Baltimore family. My parents moved back to Baltimore after I went to college.

Rayetta Michael:

When I finished my master’s, my first year was at Chestnut Lodge.

Bob Kolker:

Wow.

Rayetta Michael:

So, it was neat seeing that mentioned throughout.

Bob Kolker:

Did it seem like an unorthodox place then, or had it conventionalized in a lot of ways?

Rayetta Michael:

In very many ways. And it was just a few years before it closed. It closed in ’99, but it was a great experience to have been there even for a year and a half.

Bob Kolker:

In my research, I found that a kid I was friendly with in high school, that his mother was a long-time therapist there and an accolade of Frieda Fromm-Reichmann’s and a real very much a devotee of the whole approach, and she’s sitting on YouTube, giving speeches about it. I had no idea any of that was near where I lived. Actually, since the book came out, a cousin of mine said, “I’m reading your book and what used to be Chestnut Lodge is in my backyard, I can see it from my house.”

Rayetta Michael:

Right, it’s a development now. And where our supported living community is, in Rockville, it’s just around the corner.

Bob Kolker:

That’s funny.

Rayetta Michael:

And Stacy lives in Germantown.

Stacy Derrick:

So, I’m pretty close.

Rayetta Michael:

She’s local. And then I live in the Eastern panhandle of West Virginia.

Shannon Harris:

I’d like to go back to something that you said earlier, if we could. I feel like it’s a different thought process than what Stacy and Rayetta were talking about yesterday when we were going over the questions that we wanted to touch on with you. The conversation we were having was more about how the system hasn’t really changed.

Bob Kolker:

I’d love to hear about that.

Shannon Harris:

I’m going to turn it over to Stacy and Rayetta to talk a little bit more about that, but I just thought it was so interesting when you said, “It seems like it’s gotten better,” and my instant reaction was no.

Stacy Derrick:

So the fact that we exist, I do think that piece is better. But I think, overall, it’s still so much struggle and so hard for families to know what to do and to have options and to be able to afford those options, and even when you can afford the options. I mean I know a big thing right now in the news is everything going on with Kanye West, and we’re seeing it doesn’t matter how much money you have sometimes.

It’s just so hard, I think, sometimes, when you have people who are resistant to getting help or not able to see it. That’s always where I still feel like there’s so much that still needs to be done is when you’re talking about the severe, severe, not mainstream mental illness, but severe mental illness, that it really is getting to the right places can be hard.

I know that we’ve had families before, I remember one family specifically, when they found us, they were like, “Oh my gosh, I’m so grateful to find you, I’ve been looking for something like this for the past 10 years for my son because we have no idea what to do.” And the way they found us was random. A care coordinator was visiting a client at the psychiatric unit in the hospital, and this mom happened to overhear her talking to the psychiatrist and was like, “Wait, what you’re talking about is what I need.” But I do think there’s so much out there that’s so unknown and not there for support, even on a large-scale level, to get the help and for families not to be on their own.

Bob Kolker:

Places like your place, are there groups out there advocating for more of them? Like, is it on a list, for instance, to try to beat the drum, saying we need more residential, full supportive facilities? Or are they concentrating on other things?

Rayetta Michael:

Whenever you were saying what you were writing was complicated, the treatment of serious mental illness and the laws that have been written and changed to deinstitutionalize in the 1960s, you mentioned that whenever the medications were developed and they said, “Let’s get everyone out of the institutions.” When I was at Chestnut Lodge, we’re going back 25 years ago, people were complaining that the length of stay was so short in the hospitals. This is what they would say, “We used to be able to keep people for three to six months and really get them stabilized before they went out. Now, we can only keep them 21 days.”

And people were saying, “We’ve got to advocate for longer stays. We need more hospital beds” then, 25 years ago. Now, the average length of stay is three to seven days, and there are fewer state hospital beds. In the state of Maryland, all of the state hospital beds are forensic, you have to commit a crime to be able to be in it; it is very rare to get someone in simply because their illness is so bad.

And we’ve actually had one person that we worked with, and have been doing this for 25 years, and only had one person that we were able to follow until she got into a state hospital bed, and it took her over six months at one of the local hospitals, they kept her for six months, and she had to injure herself very severely on an inpatient unit before they said, “Okay, now we’ll be looking for a hospital bed for you.” And she’s gotten there and she’s done very well, but she could be there very long-term.

So, the advocacy work is really complex: what do you advocate for? Right now, more hospital beds. Also, more support in the community. But then how do you get people who say, “I don’t need to be on meds” to accept that community support? And one thing that we really get behind is assisted outpatient treatment, where after so many involuntary admissions, they could be “court-ordered” to accept their medications. But all of this is a very long, tedious process. That should be your next book, Bob.

Bob Kolker:

More beds, but all kinds of beds, some residential, some short-term, some long-term.

Rayetta Michael:

Right, that full continuum of care. Did you come across any advocacy groups?

Bob Kolker:

No, I’ve been doing that now, since the book came out. There have been a couple of talks I’ve done where the local NAMI chapter has been involved just to be there for it, but I have not cracked NAMI in particular. I sent an email to the leadership at some point, saying, “Hi, it’s an Oprah book, you might want to look at it. Let’s talk. What can I do for you?” And no answer. But, on the other hand, I have made the acquisition and have had several great phone calls with Xavier Amador, the LEAP method guy. He’s a psychoanalyst who developed a method, it’s an acronym, LEAP, it’s to help people who are not self-aware who have … I’ve lost the word.

Rayetta Michael:

Anosognosia.

Bob Kolker:

Anosognosia, yes.

Rayetta Michael:

He has a brother with schizophrenia, right?

Bob Kolker:

Yes. And he had a Ted Talk. He now has an institute, or a foundation, and they spread the word about that. And he’s been helpful because he knows people at other places, like the Treatment Advocacy Center and NAMI, and so I’m going to get a foot in the door and learn a little bit about what’s what. When I think about what my deal will be in the next year or so, advocacy should become a part of it, for sure; I’d love to be involved in different ways. I’m remembering now, it’s Spring Grove, my mother’s rotations were at Spring Grove Hospital in Catonsville, which was a psychiatric hospital.

I had so many misconceptions about schizophrenia before working on this. I really thought that the medication was medication for depression or anxiety or bipolar disorder, that it was a game-changer and that you could be mainstreamed once you were on it, and I learned it’s just not like that. And I learned that the medication hadn’t really changed in 40 years.

And then the most interesting thing to me was Dr. DeLisi being told, in the late ’70s or early ’80s, that the smart money wasn’t to specialize on schizophrenia because you weren’t going to get anywhere and your whole career would suffer, like better to choose a career where there was some potential movement so that you could maybe have some longevity. To me, that’s very human; you see that in other fields, why not in science? I worked on the staff of a magazine, I would only really, really want to work hard on a story if I knew there was a chance it was going to run. If the editor said to me, “Well, maybe it will run, maybe it won’t,” then I would try and find something else to work on. So, everybody’s trying to do what gets traction. And yet she didn’t, she went off and worked on this, so I thought that was brave.

Rayetta Michael:

Very.

Bob Kolker:

And it made me think of things like some terrific non-fiction stories, like Moneyball, where the coach is trying to do something that none of the other teams want to do, but he keeps doing it, even though everybody else tells him he’s an idiot, and then, of course, it ends up paying off. You want to root for that kind of person sometimes.

Something that Stacy was saying about the support piece of what you do made me think of Lindsay and Peter, when she decided to take Peter in, back in the late ’80s and early ’90s, and that she actually was a one-person supportive housing for him, taking him to doctors, and then also going to NAMI meetings and talking about treatment of police, and then doing everything she could for him. She really seemed to be filling in that blank when one didn’t exist for him.

Rayetta Michael:

I mean she was doing it alone. It’s too much for any one person to do, you need a team, a team of people to support each other at the same time as supporting someone that has so many needs.

Bob Kolker:

I’ve heard about recent studies suggesting that CBT is helpful for schizophrenia patients, not to reverse their disease, but to help them in day-to-day life and maybe with medication compliance. Does that enter into your work at all?

Rayetta Michael:

Because each individual is so different, so we’re connecting them with the team members and treatment providers that work for them. So, we’ve had a number of people that do CBT and will go through the groups and the training processes and use the skills in daily life, and it’s been very, very helpful for them. We’re supporting the clients, we’re not providing the treatment, so we don’t have CBT as a part of what we provide, but when we’re seeing someone that is struggling in certain ways, I can’t really voice what that is, we can recommend, “We think CBT could be helpful here,” and we’ve found that to be the case with a few. Others, ECT has been helpful, that would have severe depression that’s not responding.

But I’ll tell you, the biggest thing that we have found to be helpful across the board is relationship, and relationship with other people that are in similar experiences, as well as with the people that are treating them. Once they’re feeling like they’re understood and cared for and heard, compliance increases dramatically. And the other thing that we’ve found that I think is very hopeful is how, when a person stays on the medication, and that’s a big if, but when they do, and there’s enough support around them to support that, we can really see the brain heal itself over time.

Bob Kolker:

That’s amazing. That suggests that early intervention really is crucial. What if, from the age of 15 to 16, you were on clozapine, and then suddenly you didn’t have a need for it after that?

Rayetta Michael:

Right. Well, we actually had two instances that were really dramatic, and I like to tell stories. One was a young man, the other a young woman, and both of them came to us in a very psychotic state, where they were filling journals with scribbles. You would ask them what they were writing, and they were writing a very big, important work.

And this was at different points in time, this didn’t happen at the same time. Before coming to us, they’d been in very long-term hospitalization. The agreement was if they were in our supportive living community, they would stay on the same medications, the psychiatrist would keep them on the same core medication. One was on clozapine and the other was on Zyprexa, a variation of clozapine.

I’m going to say, for the one individual, it took probably about two years and he was able to start writing paragraphs and take courses at Montgomery College, which is just around the corner. And after four years, he’d made As in courses there, he had a tutor, and he’d finished his tech … he got certified as a technician-

Bob Kolker:

It was like a technology certificate.

Rayetta Michael:

Like a computer technician to work on the Geek Squad, and was able to go out and get part-time work in that field. Then, the young woman, it was something very similar. When she came and was doing the same thing, we’re like, “Well, there’s hope.” And it really was, it was about three years and then she was making As, without a tutor, at Montgomery College and finishing classes at MC, and then was able to get employment as a waitress in Rockville. So, it’s promising. Now, the key is: will they stay on the medications as they are “cured,” because they feel like, “I don’t need it anymore,” and what happens then?

Bob Kolker:

Do they or their families have stories to tell about law enforcement, about conflicts or skirmishes with the local police? I ask just because it’s a hot topic.

Rayetta Michael:

Stacy, could you talk to your different interactions with Montgomery County, who have had the CIT training, versus other counties?

Stacy Derrick:

A few years ago, we had a client, this gentleman who was in his mid-60s, he was Black, he was a Rastafarian, and he was very psychotic. Lovely, amazing guy; he was actually one of my favorite people to spend time with. I needed to call the police for him multiple times, and it was so clear, depending on where he was living, because he’s lived in both Montgomery County, and then also in PG County, how clear the different police training was.

When he was living in Montgomery County and I had to call for some type of support, there was one time I went to his apartment to check in on him, see how he was doing, and he didn’t want to hurt anyone, but I knocked on the door, “Hey, it’s Stacy,” and he said, “I need you to go away because I don’t want to hurt you.” I was like, “Great, I’m going to go away.” But he’d opened the door and I could see that he had thrown a knife into his wall, and so I was like, “Okay, well, you’re having a tough day.”

And so I had to call, and it would be police officers who came out, they actually come out also with someone from the crisis center, and it’s a whole team of people who come, and they are really exceptional with talking to him, with deescalating. And then there was a time that I had to call, he’d moved to PG County, and I just felt for those officers because it was so clear that they had no idea what to do.

Instead of a whole team of people, it was two officers who came out, and they were actually deferring to me, they were like, “What do we do? Is he going to be dangerous? We’re really worried.” And I was like, “If you talk to him, if you have a dialogue, he doesn’t want to hurt people. I know he can look aggressively,” and really he can be, I mean he’s very psychotic, he hadn’t been on his meds, but that’s not what he’s wanting.

But just the training and the difference was so very clear, that they had no idea. And so it was more difficult. They put handcuffs on him, but when the Montgomery County people were taking him to the hospital, they also handcuffed him, but they talked through the whole thing, “Hey, listen, to take you out, I need to put handcuffs on you. Are you okay doing that?” He was agreeable. Versus, in PG County, where it really was so much more aggressive, and I think it’s because they were so scared, they really were scared.

Rayetta Michael:

So, we’re big advocates for the CIT training, big advocates for the Crisis Intervention Training for the police force.

Bob Kolker:

This is something I’m hoping to write about in the future, for sure, about crisis intervention teams, and also what makes a good one versus a bad one because one thing I’m hearing is that not all crisis intervention approaches are created equal, and particularly when they’re compulsory for police departments, how effective can they possibly be? I’m still learning about all that stuff.

Stacy Derrick:

Well, and I will say, not just with this one gentleman, but, overall, I’ve always been really impressed when we have had to call the police in Montgomery County. I do feel like that training that they have, they come with a very clear different level of experience. And I do think a lot of it is really education because the more you know, the less scary it is.

And I really think if you’re coming in and you’re scared, you’re not going to be able to react the same way. But if you have a level of education and you know the way that you should try to talk to someone and you know you have a team, because Montgomery County will do that, they’ll have someone from the crisis center, an actual crisis worker, come out, so it actually is a skilled person coming out to be there and to help support and to talk to them, and it’s a huge difference.

Bob Kolker:

That’s great. Are there people who stay with you who have no family, who it’s either you or the streets? Or is there always, inevitably, a family to be involved in their care as well?

Rayetta Michael:

So, it’s interesting, that choice between us or the streets is generally a medication issue more than a family issue. If they’re agreeing to take their medications, then they’ll want to be with us. But everyone who’s with us does have family. We are private pay. Some have family that live in California, they’re not local, so we’re taking care of their day-to-day. 

Stacy Derrick:

I was going to say, even when you’re talking about the family in California, while that person is actually paying the bills, but that is the extent of the involvement, we become the family for these people. Sometimes, there will be the family interaction, but sometimes it’s us, we become their local family connection.

Rayetta Michael:

And for those whose illness is more severe, sometimes it takes away their family interactions, the paranoia will be directed at their family, their delusions could be directed towards their family, and they just don’t want to have, it wouldn’t be safe for them to have interactions with their family. And those are the families I’ve been most impressed with, how they’re still there, they’re caring, they want to see that their needs are met; yet, at the same time, the illness has robbed any kind of reciprocity.

Bob Kolker:

There was a halfway house in Colorado Springs called CARES, another acronym, that Peter and maybe one of the other brothers went in and from time to time, and Mimi, the mother, knew them and they knew her. I wasn’t able to learn a lot. It makes me wonder how different they were from a place like yours, what the 1970s version of Help in the Home was and what it wasn’t. I do hope, in a general sense, that this book prompts a discussion of what’s changed and what hasn’t changed. To that extent, perhaps it’s valuable to people who are going through it now, whether it’s family members or others.

Most of the mail I’m getting is from people who are looking at it from the rearview mirror of “I’m in my 70s. When I was in my 20s, my brother got sick and it changed our family’s life,” so similar stuff to the Galvins. There are some people who are dealing with it right now, but not a lot, and I wondered if you thought the book might be useful to them in some way, and maybe there’s something I’m not seeing that’s valuable for them.

Rayetta Michael:

Well, what I’m thinking is, at the end, you end on a note of hope, and how it’s about family connection and family caring for family in spite of all the trauma and hardship that this illness can bring into a family. And then you also have the researchers, where they’re still plugging away, still looking for better treatment modalities and all of that. I think, for me, the thought is I don’t know that there could be another family that had it harder than the Galvins, and yet they’re still there caring for each other, and that’s very encouraging and I think would give hope to other families that are experiencing a lot of difficulties.

Bob Kolker:

Yeah, I guess that’s true. An extreme example can be it can maybe make someone feel a little less alone in dealing with it.

Stacy Derrick:

And that was it for me, just the, I don’t know, not normalization, but the humanness of having a story to connect because I think that’s so much of it is everyone does feel like they’re alone and they’re dealing with something, and while it is all unique, there is that piece of connection. I think that’s really important. And also just to talk about this in a mainstream way. Mental illness, it is here, it is part of life and how do people handle it, what can happen. That’s, for me, the big piece is just that it can really make mental illness a part of mainstream dialogue, and I think that’s so critical.

Rayetta Michael:

What a huge gift you’ve given us.

Bob Kolker:

Thank you.

Rayetta Michael:

And the Galvin family, to open themselves up in the way they opened themselves up for this.

Bob Kolker:

Yeah, I mean it was a big gamble for them, for sure. Even though I think we all knew each other pretty well by the time things were getting underway, that they had some comfort level going through it. I think in the months before publication, some of them starting to get very apprehensive, saying, “Wait, what did we sign on for exactly? What is this about?” Certainly, Oprah Winfrey gave them more peace-of-mind. When she recognized the book, I could practically hear them all sighing with relief, like this is not going to be a problem. And so they feel good about it, which is great.

Rayetta Michael:

That really was my follow-up question. What has been their response since publication, so feeling good about it?

Bob Kolker:

Lindsay has embraced activism. She’s on the board of the LEAP foundation. She’s very interested in ways to help people who have family members who are not self-aware. She thinks that that’s the big public safety issue, when people are worried about the mentally ill, that if you just understand that they don’t think they’re sick, that that might be helpful to you. And Margaret’s very excited about the whole self-care piece of it, she thinks her journey of coming to peace with what happened in her family could be helpful to others, and she’s getting lots of nice mail, so she feels good about it, too.

Bob Kolker:

I think the family members are glad that Mimi isn’t getting beaten up on, that there certainly are some readers who say, “Nobody should ever have that many children. How could they possibly even think of giving enough attention to people under healthy circumstances?” There’s that corner of people, but then everyone else sees a gray area there, which is nice.

Bob Kolker:

I’m really happy to continue to be a resource for you guys in any way. And, Shannon, if you’re whipping something up in writing and had other questions, just email me, I’ll send you answers, I’m happy to do that.

Shannon Harris:

Yeah, absolutely. I just wanted to touch on your comment about the hope for what this book will bring to other people, and if it’s any consolation, I have been talking to a lot of therapists, both locally and nationally, that’s part of what I do for Help in the Home. When I bring up this book, almost every therapist that I’ve talked to has said that they have it on their nightstand. So, what my hope is is that they read it and love it like we did, and they will recommend it to families that might be finding out for the first time that this is an issue in their family, or for families that they’ve been working with for a long time that have struggled and to have this book, like Rayetta said, it’s a gift, to have that connection to this family and to know that they’re not alone.

Bob Kolker:

Wow, that feels great. Thank you. That’s really wonderful to hear. Anyone writing a big non-fiction book these days has to be ready for it to disappear the moment it’s published, and so you play all sorts of games in your head, saying, “Well, even if it does, it was worth it because I learned this and I did that and I met this person.” So, a lot of what’s happening now feels extra to me, it feels like, “Wow, who knew it could actually happen this way?” So, each time it happens, it just feels better and better.

Shannon Harris:

And we wanted to end, we’ve been big fans of Brené Brown’s Unlocking Us podcast, and her rapid fire questions.

Bob Kolker:

I don’t know what that is, but I know her. I’ve read a bunch of her books and like her a lot. I didn’t know she had a thing. Okay, that’s good.

Rayetta Michael:

She just started. The Unlocking Us podcast began right as COVID shut everything down, it was very timely. I just love the way she structures it, and these rapid fire questions at the end, I thought, would be fun, if you’re okay with that.

Bob Kolker:

Okay, cool.

Rayetta Michael:

Okay. One, what’s on your nightstand? Look over at it.

Bob Kolker:

The reason why I’m on a bed is because we’re traveling right now, I’m in Cape Cod, so I brought a Kindle, and the current thing I’m reading is about 20-years-old, it’s a big history of Hollywood, called City of Nets. It’s been fun because there are lots of great little anecdotes about how Casablanca was made or how Double Indemnity was made, that stuff. So, that’s what’s on my nightstand.

Rayetta Michael:

Cool. What is something people often get wrong about you?

Bob Kolker:

I think because the stuff I write about is so grim, they probably think that I have a big storm cloud over my head, that it’s difficult being around me in some way.

Rayetta Michael:

Your favorite meal?

Bob Kolker:

Spaghetti and meatballs.

Rayetta Michael:

One thing you are deeply grateful for right now?

Bob Kolker:

I think, right now exactly, we were in the city for the entirety of this crisis, but we just got away to Cape Cod for a few weeks, my wife and two kids, to have a little more space and a change of pace has been really great.

Rayetta Michael:

The last show you’ve binged and loved?

Bob Kolker:

There have been a lot. With the family, we just binged New Girl because we’ve been in COVID together. I have teenage kids and we were trying to find something that was really long that none of us had seen, so we just watched seven seasons of New Girl.

Rayetta Michael:

Favorite movie?

Bob Kolker:

Probably The Godfather.

Rayetta Michael:

Okay. And a snapshot of an ordinary moment in your life right now that’s brought you joy?

Bob Kolker:

It’s going for jogs in the morning with my dog. The two of us go out, usually before everybody else is awake, and that’s been great, and it’s felt great because normally I’m not a habitual jogger, but I’ve had the time and the space here to do it every day, and the dog loves it, he’s really happy.

Rayetta Michael:

That’s great. Thank you so much.

Stacy Derrick:

Yeah, this was amazing, thank you. I’m so grateful that we had this. This is fantastic.

Bob Kolker:

I’m glad to stay in touch and, in particular, if I end up writing about crisis teams, I’ll let you know.

Sign up for our newsletter

Be the first to get the inside scoop in our monthly newsletters. Personal notes from the founders, team spotlights, and more! Sign up below.

[mc4wp_form id=1884]