Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?
We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.
SSY is the first and only schizophrenia awareness club organization at York University.
It raises awareness and humanizes individuals diagnosed with schizophrenia. They provide a voice for people with schizophrenia and other mental illnesses, and create an atmosphere of de-stigmatization at York University.
SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis."
The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.
I was delighted to join Christopher Grant (artist known as xoradmagical on social media), and Matthew Dickson (bicycled across Canada to raise funds for mental health services).
You’ll hear the panel in three parts - First, my story of the family POV when psychosis occurs, then Matthew, then Christopher - who reminded me so much of my son Ben’s experience, it almost felt like I was having the conversation with him I wish I could have - if there were insight.
Ever wondered what psychosis feels like? Would you like to hear from someone who has experienced it and now has the insights so many of our loved ones don't have? Hi, I'm Randy, and Mimi and Mindy, my other two moms, are off traveling this month, spreading schizophrenia awareness and also enjoying some R. So rather than leave you without new episodes to hear, we're lucky to have permission instead to repost this recording from the Schizophrenia Society of York in Canada. They raise awareness and they humanize individuals diagnosed with schizophrenia. They collaborated with the Schizophrenia Society of Canada for this, their fourth annual panel event, Duality of the Reality, Living with Psychosis. I was delighted to join Christopher Grant and Matthew Dixon, and you'll hear the panel in three episodes. First, my story of the family point of view when psychosis occurs, then Matthew, who bicycled across Canada to raise funds for mental health services after dealing with his own challenges. And then Christopher, artist known as Zorad Magical on social media. I have to add that talking with these two gentlemen kind of made me cry because it was almost as if I was able to have the conversation with my son Ben that I can't yet have. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye.
SPEAKER_00
So thank you guys all for joining us today. We are the Schizophrenia Society at York, and we're hosting our fourth annual panel event called The Duality of the Reality in collaboration with the Schizophrenia Society of Canada. My name is Livanya Vyallen, and I'm the president of SSY, and I am so thrilled to be hosting this event this year. The whole purpose of this event is to have guest speakers come on board and share real life lived experiences with psychosis and schizophrenia. So we really get to see what it's like for an individual who has it themselves and how it is for them to live a day-to-day life with this mental illness. You know, some of us might know someone who has schizophrenia, some of us might experience it ourselves, and then some of us might just be here to learn more about the mental illness. So I applaud you all for coming here today to learn about this event, learn about schizophrenia and be a part of taking part in healthy conversations surrounding mental health. So thank you. So today we have three incredible guest speakers joining us today. We have Randy Kaye, who is the co-host of the Three Moms in the Trenches podcast. And I'll do a proper introduction of everyone before they speak. So this is just a little overview. We have Matthew Dixon, who's done two bicycle rides across Canada, and Christopher Grant, who does artwork on social media. So before I get started, some of us might not know what schizophrenia is. So I'll just talk a little bit about what the disorder actually is. So schizophrenia is a neurological disorder which is characterized by episodes of psychosis. And this is what causes an individual to have a distorted perception of the reality. And some symptoms, symptoms can vary between different people who, and everyone who has schizophrenia experiences it differently. So no symptoms are the same for each person. Some of the symptoms include delusions and hallucinations, and these are considered positive symptoms. And there's also symptoms like cognitive decline, difficulties with concentrating, and those would be characterized as negative symptoms. And schizophrenia is a disorder that affects 1% of the world's population and 1% of Canada's population. And this number could actually be a little higher because there's a lot of stigma surrounding psychosis and schizophrenia. And you know, this will prevent people from going forward and getting diagnosed. And there's also a lack of education when it comes to psychosis as well. And that's part of what we do here. We really try to promote and spread awareness about psychosis and mental illness. And with proper treatment, these symptoms can be managed. Let me just tell you a little bit about the Schizophrenia Society of York. So we were founded in 2019 by an individual named LIBA, and we are the first and only Schizophrenia awareness club organization at York University. And I think one of the few schizophrenia awareness organizations within Ontario and Canada worldwide because it's a very specific topic, and we really want to start talking about it more. And that's really what we do here at SSY. We try to aim to humanize individuals who have schizophrenia because a lot of times in social media and in the entertainment industry, it's not being put under a positive light. It's always shown in a negative way and portrayed in a negative way. So what we do here at SSY is to really, you know, debunk those myths surrounding schizophrenia and, you know, make sure that misinformation is not being spread and really highlight the lived experiences of individuals who either go through it themselves or who have family members who have schizophrenia. And I think it's easy for individuals to go on the internet and find an article and read about what it is, but it's a different experience to actually hear it from someone who goes through it themselves. And it's it's truly eye-opening to hear directly from someone who goes through it. So that's really what we do. We try to provide a platform to educate people and raise awareness and promote healthy conversations surrounding mental illness and psychosis. I wanted to introduce our first guest speaker, Randy Kaye. She is the co-creator and the host of Schizophrenia, Three Moms in the Trenches. She is the Connecticut State trainer for NAMI's Family to Family Course and is the author of two books, Ben Behind His Voices, One Family's Journey from the Chaos of Schizophrenia to Hope, as well as Happier Made Simple, Choose Your Words, Change Your Life. She's also an actor, actress, voice talent, radio broadcaster, audiobook narrator, teacher, and speaker. So many roles here. And she's also spoken at the CIT International, American Psychiatric Association, and several other organizations. So thank you, Randy. I'll pass the floor to you.
SPEAKER_01
Thank you. I put in the chat, I'm already so inspired and impressed by your team and your passion for what you're doing and the work that you're doing. So, Lavanya, how long would you like me to speak? Or is this just an introductory story? And then the how long would you like me? Because I can talk for two hours or 10 minutes. And I know you have two other speakers.
SPEAKER_00
So 15 to 20 minutes. That should be okay. Yeah. Thank you.
SPEAKER_01
So oddly, we're beginning with the perspective of a person who has never experienced psychosis, but I have seen it and felt the effects as a family member. My book, Ben Behind His Voices, is clearly from a mother's perspective, the changes in my son as schizophrenia took hold of him and took hold of his life. And so, as we hear from our other speakers later, we'll have a greater idea of what it feels like from the other side. But uh I'm in Connecticut in America, by the way, same time zone as uh many of you. And my son, his real name is not Ben, but he has given me permission to speak about my version of his condition as long as I don't use his real name. So uh Ben Kay is someone who does, you will not find on Facebook. It's not his real name, but I speak about him using that name with his permission. So here NAMI is the National Alliance on Mental Illness. It is an American organization, and it was started by families of people with mental illness, and it has a big umbrella. But I joined because I felt so alone and felt that there was nobody going through what my family was going through. When I started going to NAMI meetings, one of the first things I learned was that I wasn't alone and that when mental illness happens, it happens to the whole family. And by family, I will include friends, loved ones. I wanted people to understand what psychosis and schizophrenia does, not just in my estimation to the person I love, but to everyone who loves the person I love. So my son Ben is the oldest of my two children. I have a daughter, Allie, that is her real name. They are now 30, almost 39 and 42. And they were really, really close growing up. He was a great big brother. In fact, all of Allie's friends used to say, Oh, you're so lucky to have been for a big brother. He's so nice to you. No, it wasn't perfect. If any of you have brothers and sisters, you know it's never perfect. But overall, they really were close. She looked up to him. You will hear this story again and again when you talk to family members of people who have a severe mental illness. Incredibly bright, very high IQ, um, scored high on the SATs, a standardized test we take in America for high schoolers, and he took it in eighth grade and did incredibly well. A Johns Hopkins scholar. Everybody said, Oh, you're so lucky, he's such a good kid. He's gonna go to Yale and he'll support you in your old age. And as is very typical with males who develop schizophrenia, round about the time Ben was going into high school, which is around 14 here, he began to show signs of anxiety. Now, that wasn't unusual because he I was a single parent. My children's father had disappeared when um without a trace when the kids were three and six. I've since learned that this kind of stress can be considered a second hit when something traumatic happens. But I do not believe the trauma caused anything. My daughter had the same trauma and she's neurotypical and perfectly healthy. But that is what I chalked up the anxiety to. He had stable, wonderful love from me, from my parents, from his sister, from his friends. They were in a small private school where I taught, and so many things were going right. I got him help when he needed it. He had a big brother, but things began to change when he entered high school. And he began to come home saying, This was a new school, which I chalked up to just he'll have to get used to it. Everyone's against me, nobody likes me. Looking back, there are a lot of things that happened in high school that I can now, knowing what I know, look back and go, oh, it was early symptoms of schizophrenia developing. But I didn't know it at the time. What families do is we normalize. I know some of you in your introduction said you have a friend or a sibling with schizophrenia. If you knew them when it was starting, you may have seen what we call prodromal symptoms or early signs. My son eventually he mostly got by by the skin of his teeth, but round about the time he was 16, things started to fall apart. He won, he stopped showering, he started using a lot of cannabis, he dropped out of high school one month shy of completing almost all of it. But he said he wanted to wander around the country and look for his father. Here in America, I had no legal right to keep him in school. He dropped out and proceeded to get worse. He was grubby, he wore the same item of clothing, he started talking about psychic vampires, and I chalked it all up to drug use. I didn't know anything about schizophrenia, I didn't know anything about mental illness. I thought that the cannabis might be a problem, but when I was a kid, I had friends who smoked cannabis and it wasn't the cannabis you guys have these days. So I didn't know quite how strong it was. I sent Ben to a troubled teen program because he would get a job and lose the job, get a job and lose the job, and it he started being impossible to live with. And I said, legally, I can find you another place to stay, but you're not staying here anymore because you're making me miserable and your sister. Or you can go to this program. So we sent him to a troubled teen program where he got cleaned up and cleaned, and his behavior was better, but something was still very off. I went to visit him, and he had run away and come back, and the symptoms were starting to get worse. He then spent five and a half months homeless in Idaho. Once he was 18, he left the program. And by the way, at that point had gotten a GED, which is a high school equivalency diploma, and started college classes in this program. But he was answering to another voice. That's the only way I can think of it. So he spent five and a half months homeless in Idaho in the winter, calling me every week and asking me if I'd pay for a therapist, which I did, and I was happy to bring him home, but there was a contract he would have to sign and he would have to agree to take medication. Eventually he did agree. At this point, I started doing research and I started consulting doctors, and it became clear to me what Ben had. And when he came back, the diagnosis of schizophrenia was confirmed. But he came off the train doing really odd things. He wouldn't touch a doorknob, he would take three steps forward and two steps back, he would get a job, and he was on medication, but would try not to take it. Let's just say we had a few years of trying to get him to accept treatment. And then I even tried letting him live on his own in his own apartment because the therapist said I was the problem because I'm a helicopter mom, which I'm not. Nothing would make me happier than for my kids to be on their own and not need me. But my kid needed me. But he said, if I'm on my own, I'll be fine as long as you're, you know, out of my hair. So I paid for an apartment. I let him have his own apartment. And then things got stranger and stranger. He would wander the neighborhood, he would talk to rocks, he would wander the neighborhood in his bathrobe. Sometimes he would scare children. He was never violent, thank God. But he would start talking to people that weren't there. And then it was a waiting game to wait for him to be sick enough to be hospitalized. You can't get hospitalized in this country unless in most states you're a harm to yourself or others. And I just waited. I waited for him to be sick enough. Finally, when he was 21, he was hospitalized five times. And I was able to obtain conservatorship over him of his estate and person. Still can't force medication, but except when they're in the hospital. But he began to finally get stabilized on a medication called Clauserl, which really works for him to, in my estimation, for the positive symptoms and the negative symptoms. And he moved out of the hospital into a group home, and that's where he is at the end of my book. I wrote my book in 2011. The updated version is an audiobook version only, and that updates you and that came out a couple of years ago. But it's a roller coaster. He went through five years in a group home where he would come home every weekend and visit us. And during that time, he earned 58 college credits and started becoming employable. He gained his confidence back. He began to be stabilized. Once he got a job, they said you can't live here anymore, put him in his own apartment. My book came out and with his permission and he crashed again so badly that he showed up at work. He was working in a local zoo, the only zoo in Connecticut. And they loved him there because while he was stable on his medication and had what he'd always wanted, which was a job, he felt purpose, he felt structure, he was sociable. I always say for recovery, it takes four things structure, purpose, treatment, and a community. We all need love. And that can be your family, it can be your friends, it can be co-workers, it can be fellow people who are diagnosed with what you're diagnosed with. He was really doing well. And then he went off his meds because in his own apartment there was no supervision. And given his druthers to this day, he would go off his meds. He crashed again. And almost six months later, in and out, they released him, and I said that he could come home to us as long as he took his meds every day. I can't force him, but I made it a house rule. And he lived with us for nine years after the book came out. And every single night, either my husband or I would stay up and make sure he took his meds. As he got more and more employable, he began to get a job as a server in a restaurant, and he was really good at it. He made a lot of money because he with the treatment, he was 65% back to the person I knew he could be. And I kept saying, That's good enough, I'll take it. But I knew he was also using cannabis and that would interfere. But he did not believe it. He would come home from the restaurant at 1 o'clock in the morning, then 2 o'clock, then 3 o'clock in the morning, and either my husband or I would stay up to give him his meds and supervise. We never went to bed at the same time, but it was worth it. Every time we got the meds administered, I would say to myself, okay, we've got another 24 hours. And that's how it felt. I don't think too far ahead. I just think about the moments of joy. So it was precarious, but good. He participated in family functions. His little sister, who often says to me, Well, I lost a big brother, but I gained a little brother. She meanwhile had gotten married. He was able to go to her wedding and make a speech at the wedding. I'm not going to show it to you because this will be made available to the general public. But if I make a keynote speech somewhere that I know is not the area that we live in, then I do show videos of him as a little boy. Some videos I have of him in psychosis where he's unreachable, even though he's trying hard to reach. Videos of him talking to his voices when he thinks I'm not looking, and even when he thinks I am. Because to him it's normal when he's off his meds. And then a video of him making a speech at his sister's wedding, which is one of the treasured moments, because he was stable. He was doing fairly well. He leased Alexis. He was living with us. He bought a lot of things because he had a lot of extra money and we weren't charging rent. He got off of Social Security. And then COVID came. And the restaurant closed. So he lost his structure, he lost his community, and he lost his purpose. And then he started refusing his treatment. And then one night I woke up to him and my husband arguing. And he refused to take his meds. And it sounds like this to me. I'm not crazy. You're crazy. You think I have an illness. I don't have the illness. Now I had decided a long time ago, it wasn't my job to convince him he has schizophrenia. It was just my job to set house rules and set the boundaries that I can set of what I'm comfortable with. That's what boundaries are. It's what you are willing and what you're not willing to do. I will always love him, but I won't always allow him in my home if I deem that he is unstable. Because I love my husband and I love my daughter and I love my grandchildren, and I don't want them to feel scared. And when he is psychotic, I feel frightened. Not for my life. He's never, thank God, lifted a knife or anything to me. But I could understand how somebody could, if they have voices, which he says he doesn't hear, but if they have some sort of thought that tells them they have to do it, I can understand it. And I'm grateful that so far we haven't faced that much fear. But I don't want a five year old to see his uncle psychotic. There's people I have to protect in my life. My son, I picked up the phone to call the police, and my son ran out of the house with his car. And when I finally reached the police, they to look for his car, they said, Oh, don't worry, he's here. He had driven straight to the police station to complain about me. Three and a half hours later, of the police who were wonderful and CIT trained, trying to calm him down. We ended up getting a 72-hour hold and he went back to the hospital during COVID. He was in the hospital five and a half months, again, unheard of in America, because we don't allow stays that long. He wouldn't talk to anyone. He, my very sociable son who waits on tables and loves kids, wouldn't talk to anyone. His recollection of that is, well, I just didn't feel like talking. But I knew he was hot, he was lost behind psychosis. Eventually, I got right to Medicaid again. And eventually he was released again to a group home where he was doing fairly well. I no longer am willing to have him live with us. I want to go to bed at the same time as my husband. And he's 40 years old. It's there's only so much control I can have over his life. Unfortunately, although it for a year in the group home he was doing well, his teeth are so bad. And the medication he's now on, though more convenient, it's HALDAL time release injection, it's more convenient, but his teeth have turned black. So the possibility of getting weight during work is pretty small, even though maybe it's not fair, but it is what it is. He did get one job. And with time release medication, as it comes time to get your next injection, the symptoms are a little harder to control. He will never say he has schizophrenia because he doesn't believe he has schizophrenia. So it's certainly not something that he would disclose to a potential employer. And I understand why. Even if he knew he had it, there are many employers that would not hire you with that illness. At the restaurant where he worked, the manager had read my book and knew he had schizophrenia, but she hired him anyway. And I'll be forever grateful to them for that because it managed people with schizophrenia are very hirable and can do great work. The problem is that they don't know they have the illness. Many don't. I understand we'll hear from Christopher later, and it's a different story. But my son to this day says, I don't have what you think I have. And the reason he said this to me is that as he was in the group home and he lost that job at a Cole's and had nothing to do all day, he started to go back to the behaviors he showed when he was 17. And none of this is in either of my books, by the way. But if you listen to my podcast, you'll know. First sign was he came up with an idea that to leave the group home and just live homeless, just live in the on the grid in freezing cold weather. We finally, he finally decided not to do that. But they moved him to a group home with less supervision, and then he met friends, and then he was using drugs. And then he stole money. Things he'd never do. This is the first line in this book is my son is the kind of son, if you give him a nickel too much change, he'll walk back and give it to you. And that is at the core who he is. But when he's high and/or symptomatic, that good-natured moral part of him can get buried. About eight months ago, he was accused of trying to snatch somebody's purse. He says he didn't do it. Maybe he did, maybe he didn't. He did not succeed, but he was arrested because she identified him. On her accusation, he has been in pretrial prison now for eight months. And the bright spot in this is that he has been accepted because we got so many letters of support from people who love him and who he who he worked for for a jail diversion program. And he's number two on the waiting list, but he's been in jail, not prison. This is pretrial, so it's he's not behind bars, but he still can't open a window, can't go outside. When he's accepted to this program, he will get some case management help, whatever he needs. And they report to the judge every week. And I'm gonna say when he graduates, could be if, but I like to think of best case scenario, then his record will be wiped clean and he can have his life back. At the moment, he is agreeing that he would like to get his teeth fixed. I don't know how we'll afford it because Medicare doesn't cover that. I've gotten him back on Social Security, so when he gets out, he'll be able to have some benefits. And we're looking for housing for him. And I hope that he makes the right choices, but I don't know. I never know. Families never know if our loved ones will stay in treatment. And on the good side, his nieces and nephew adore him. They miss him. I miss him, but not gonna lie, I also feel safe that he's safe right now. I don't think being in jail is the best possible thing, and I feel sad for him, but it's kind of a vacation for me not to worry about him because I know where he is. But it breaks my heart to see other people his age who have families and good teeth, and at least an aware if they have the illness, an awareness of the illness so they can manage it themselves. Because like every parent, I have no idea what will happen when we go are no longer here. Thank you.
SPEAKER_00
Thank you so much, Randy, for sharing your story. Um, I think it's so important that, you know, as a caregiver, you're giving your experiences and sharing your story. Um, it's not something that's talked about a lot, like the perspective of the people around a family member who has schizophrenia and experiencing psychosis. So thank you for sharing. I'm sure a lot of us may have a lot of questions, and we are going to have a QA discussion period at the end of this event. So hold on to your questions, or you can even send them in the chat, and um we can forward those to our guest speakers at the end of everyone's speeches.
SPEAKER_01
And this is Randy again. Please turn to episodes 92 and 93 to hear Matthew Dixon's story and Christopher Grant's story. Thanks again to the Schizophrenia Society of York and the Schizophrenia Society of Canada. Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, mindygryling.com, or randyk.com.
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