The Hangout with David Sciarretta
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The Hangout with David Sciarretta
#99 From Banking Executive to Mental Health Advocate: Anita Fisher's Journey
Anita Fisher shares her powerful journey from successful banking executive to mental health advocate after her son's diagnosis with schizophrenia while he was serving in the military. Anita's 25-year crusade navigating America's complex mental health system reveals critical gaps in treatment, particularly for those with anosognosia (lack of illness awareness).
Warning: this episode contains adult themes that may not be appropriate for all listeners.
To learn more about Anita Fisher's work, visit fishermhconsulting.com
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Welcome to the Hangout Podcast. I'm your host, david Shoretta. On this show, we sit down for interesting and inspiring conversations. In this episode, I was privileged to have a conversation with Anita Fisher. Anita Fisher is an outspoken and powerful advocate for the rights of those diagnosed with mental illness. Her own work in this field began as a personal journey over two decades ago when her adult son, pharaoh, was diagnosed with serious mental illness. This led to a complete transformation in their lives and in her own career, as she moved from a successful banking career to becoming a mental health advocate. Now retired, she continues to advocate on behalf of those suffering with mental illness.
Speaker 1:We covered a wide range of topics, from mental illness to substance issues to homelessness, and Ms Fisher has some strong and outspoken views on what she believes are some solutions from her own personal lived experience. To learn more about this remarkable woman and her work, visit fishermhconsultingcom. That's fishermhconsultingcom. That's Fisher mhconsultingcom. I hope you enjoy this conversation as much as I did. Welcome, ms Fisher. Thank you so much for coming on the show today and for sharing your story.
Speaker 2:Well, thank you, Dr Schroeder, for the invite.
Speaker 1:I thought it would be useful and helpful and instructive for our listeners if you would start at the beginning of your story, where you come from, what paths in your life have led you to this current moment, and then we can get into your advocacy work.
Speaker 2:Okay, great, thank you. Well, I'm originally a Northern California. I was actually born and raised in San Francisco and my husband's job brought us to San Diego County 30 years ago. Now I have two sons. They're 10 years apart in age and the son that brings me to the work that I'm doing now is my oldest son.
Speaker 2:He was in middle school when we moved here. Sorry, not middle school, he was actually a junior in high school when we moved here and I know that was a big transition for him, but he did well. He graduated. We thought he was heading off to college but something kind of changed for him and I said you know? He said I don't want to go to college and I said, well, okay, army, navy, air Force, marines. I said, until you figure out what you want to do with your life, I said, at least you can be gaining some skills going to school, whatever. And he went off to boot camp and I remember going to his boot camp graduation in Fort Leonard Wood, missouri, and I saw a changed young man. I mean, those shoulders were back, he seemed focused on what he wanted to do with his life and he ended up going to the AIT they call it. I think it's advanced something training.
Speaker 2:But he ended up in the medic corps and he was out of his class, only one of two recruits that went to Walter Reed. So his duty station was Walter Reed and he was working in the hospital. And I said, wow, I said I never wanted to be a nurse, but my mom was a nurse. His grandmother said, wow, I said I never wanted to be a nurse, but my mom was a nurse, his grandmother. And I said so, you've kind of picked up that path, you know, of going to work.
Speaker 2:And then I remember we did a family trip to Washington DC. Actually I'd never been there before and it was great for my younger son, you know he wrote a great report on all the things we saw and did in DC and I got to see him in action. You know, actually behind the nurses station I would get all these compliments, you know, from a lot of the older. His fellow colleagues there, you know, say fine young man, great young man. And this is what I always heard about my son his whole life. His report cards used to say joy to have in my class. He was a very good student and so I always like to tell about and share who he was before his illness manifested. And then, I'd say, two years into his service, I was, like you know, I used to say one down, one to go, you know, getting the other one ready and out of school. And you know, we have that dream of being empty nesters, you know and all that good stuff.
Speaker 2:Getting your RV yes yes, you know, and we used to say that we used to actually say, no, we're going to sell the house and live in a motor home. You can't move back home if you don't know where we are, you know. So we used to tease about that. But he came home one summer and I noticed he was drinking very heavily, and it wasn't just that he was drinking, but it just didn't make any sense and he just seemed to be changed in some way. And I remember, you know, I would just go to work as a normal and come home and in the evenings we'd have dinner and you know, uh, you know, catch up, but it was just something very different and I didn't know what it was. And I um remember that the morning that he was needed to leave to go back to Washington, I was going to drop him off at work. I worked downtown, so it was perfect, drop him off at the airport. And he wasn't. He just was not ready. He was disorganized, that big duffel bag thing, you know. I said you better hurry up, so he's stuffing stuff in there. I said, excuse me, I noticed that, you know, you've been drinking pretty heavy and probably some other stuff too. I'm sure marijuana may have been involved. And I said you need to talk with your sergeant. You don't want to ruin. You already have steps. He's made up. You know grades. He's been promoted. He was a certified phlebotomist already. You know he was really doing well. And I said you know they probably have a program. I'm sure you wouldn't be the first that might need some help. You know in this area. So I said please talk with your sergeant and try to get some help. And I worried as a mom you know you have this gut thing. And I worried as a mom, you have this gut thing.
Speaker 2:I dropped him off at the airport. I went to work and I just never didn't feel. I said make sure you call. I don't even think cell phones were kind of out then. So I said when you get there, call and let us know that you made it back safely. And I remember about two days I know he never called one day one. Then day two, that evening I got a call from his sergeant saying do you know where your son is? I always say that was the beginning of our journey.
Speaker 2:After that I remember that um, I, I spoke with her and um, she, uh, said you know, yeah, this is so unusual for him, but she had a butt in there and she was saying he just there's a change. We started to see a change in him. You know he, you know she was thinking it was him hanging around with the wrong people. But it was the fact that he was hanging around with the ones who like to drink and what have you and all that is very key to all of this because having a diagnosed mental illness, you will find I know the statistics say somewhere 40, 50 percent, I believe it's more, 80 percent they have some type of substance use disorder attached, which they call co-occurring disorder. You know where they're self-medicating with drugs or alcohol. You know to manage those symptoms. And so this all played a key in because in the initial part of our thinking was that oh my gosh, he's gone out there and becoming maybe an alcoholic or drugs or something like that, and that wasn't part of your family pattern or history or anything.
Speaker 2:No, no, no, and we just didn't see that coming. You know, I'm not saying he was a perfect angel. I know that he, you know, quote experimented with marijuana in high school. So you know, that's not you know, but it was nothing like that.
Speaker 1:He's not alone in that school.
Speaker 2:So you know, that's not you know, but it was not alone in that, yes, exactly, and so we you know, but this, what we were seeing, we did, we did not expect.
Speaker 1:You want me to just keep going yeah, no, no, no, you, you, you're good Okay. You keep talking and I'm I'm just looking down on here. Okay, we'll, we'll edit through these. You're good, you tell your story, this is your story.
Speaker 2:All right, thank you. So then they did locate him. He was on the grounds, but he just wasn't reporting to work. And that's where they found him. They said they counseled him and talked to him.
Speaker 1:To him, and then the unthinkable really happened was when I got a call to say your son is in the brig.
Speaker 2:I said what? So he'd gotten to the military base? Yes, he had got back to, yes, to the hospital, and it wasn't even the way that it set up the hospital. And then they had like dormitory, like you know, that sat on the campus. So he had his own room, you know, it wasn't like they were in bunks or anything. And they said he got into a fight with another soldier and they hit him with a bottle. It was just like what, what? I didn't know who they might said had never been in a fight.
Speaker 2:You know, throughout school he was always the guy. Everybody, you know, wanted to be his friend and all the girls liked him and all this kind of stuff. So this was so unusual. I said no, and I thought, ok, I'm going into some kind of, you know, alternate universe. I said who is this? What is going on? Well, it gets worse. They said well, yeah, they've had, he has enough with this, this is it. They're going to probably, you know, put him out. And so I got a call from a JAG officer who said I'm going to be representing your son and, yeah, they're going to want to court martial him, you know. And so I kind of told him his story, you know, kind of just what I just said, shared to you that birth through, you know. You know the time that he entered. He says you know what, I would like for you to come back and get on the stand and at his hearing, I want you to share that with him because we all saw what you are describing when he first came are describing when he first came and they flew me back to DC and I remember that when I sat there outside of that courtroom my husband had a friend, a family friend, who was an attorney in DC. So he came with me and he said you know, military law is different than civilian law, but I can at least listen and be here with you, you know. So he came to the hearing with me and I remember when I saw I could tell he was a high ranking person walked in with two other guys, you know, in their uniforms, and I could, you know he was actually sort of the head of the hospital, basically on the military, you know, military side, and he came up to me and they called me.
Speaker 2:You know this is my second marriage. I'm Fisher, but his last name is Degree and I will tell you about his father in a moment that he said Mrs Degree, he says I'm sorry to meet you under these circumstances. He says I remember your son when he came with the new recruits and I remember that I could pick out the ones who were going to be an issue and your son was not one of them and he proved me wrong. I mean, he proved me right and so I'm sorry to meet you. And I thought that was so kind of him to say that and make that because I thought, oh, they're all mad at him. He's not lived up to what he should. So, and just kind of hold that thought, his name is Degree.
Speaker 2:I was married previously his dad and the reason why we divorced was because his behaviors changed. We married early in our 20s and all of a sudden he was this upstanding. Actually he had been in the Navy, he worked for the Veterans Administration, we were just a young couple. I had a little job at the bank and we were raising our baby, but something totally changed in him. And so hold that thought. And then I'm going to now jump back to where I was in the story with my sons and we.
Speaker 2:There was a psychologist then that approached me as I was sitting there.
Speaker 2:He said hello, mrs Degree, they kept calling me Degree While your son was in the brig.
Speaker 2:I was seeing him and he shared some things with me that leads me to believe that this is the beginning of a mental health issue. And I'm looking at him. I said he said because we would say, oh, it was probably drugs and alcohol, that we know he was on as well because they did test, he said, but he was in there long enough where it wasn't the drugs or alcohol. All that would have been out of his system. And he says so when I'm done, you're going to hear me say some things while on the stand. And he said when I am done, make sure you get a transcript because we are trying to get a medical discharge. And all of this is just sort of shocking to me. I said medical what? And you know, and I'm just really still confused at this point, so we go into the hearing and then they do eventually call this. They, you know, talked about, of course. And then they do eventually call this, you know, talked about, of course, the incident, which was again totally out of character, surprise for my son.
Speaker 1:An altercation. Yes, yes, Some sort right.
Speaker 2:Yes, and then they talked about this psychiatrist got on the stand, psychologist, psychologist, and he said, as he's going through everything talking and and what he said voices that he was hearing voices and that he said that he used to believe that when he was in his room that anyone who passed the door was talking about him or and he said that the TV was doing things where he would throw his sheets over the TV. He was sharing this. He felt safe enough to share this with that and I'm just sitting there in shock. And he said I do not believe he is malingering. And I came to know that that is a word in the behavioral health world that means they're not faking, he's not malingering, and that I believe he has a schizophrenic form disorder. And I will never forget those words, schizophrenic form disorder. And I said wait a minute, wait, that's that part schizo. I've heard that that's people with. You know that C word that I don't ever use anymore, but you know we used to say that.
Speaker 2:Oh, that person is you know the C word and I said wait a minute, no, this can't be it. And so they and he did not get the medical discharge. They kicked him out with a bad conduct discharge.
Speaker 2:I went back home and it was going to be time to finish processing him out and they were just going to send him back to San Diego. Of course he didn't, wouldn't have any benefits whatsoever. And I thought, well, again in my mind, that whole schizophrenic, schizophrenic form disorder thing went to the back of my mind and I was like I always call it myself stigma. I said, well, it was just the drugs and alcohol. He's going to bring himself back here and get himself together and you know he has some skills, he's a. You know he maybe can work for the blood bank or a hospital or something like that and this is a blip, excuse me. And he came back and we had that discussion but something had changed. He literally couldn't get back to San Diego. He missed his flight. They put him on a bus. He went back to the base. They said no, no, you're not supposed to be here. So they got him a bus ticket and put him on a bus. I'm surprised he made it back across the country.
Speaker 2:Yes, he came. He literally had left, had lost half of his things and I he was so disruptive that one thing I remember is that there was this, this hotel, um, that was near the bus station called the Pickwick Um, and I remember that I said let's just get him a room there. I, we need to figure this out and process. By this point, I have a 14 year old at home and I'm like what kind of chaos is coming in here. So, you know, we put him there. You know he was there for a little while.
Speaker 2:Then we had him come home and you know, with the rules, you know, you know no drinking, of course, no drugs, and you need to have a purpose, goals to set, and he would say all the right things, but I just still noticed that there was something. And then my younger son said to us one day he said you know, he does some, some strange things. He he called the, the. The fire department showed up at the house when you guys were at work. It was like he was out of school at that time, during a break. And he said that sometimes he's screaming in his room and I and I said why didn't you tell us?
Speaker 2:Well, that was his hero his big brother, you know, and he, you know, didn't want to get him in trouble. And I said well, you need to tell us. And then that stuff about schizophrenic formed started. So I started doing research. We had a computer wasn't a lot on it at that time.
Speaker 2:But, you know, I found enough to where I remember seeing a checklist for schizophrenia and I could check off every box and I remember even showing it to my youngest and I said, well, I believe that this is what happened, and I did get that transcript as well, because that's going to be very important to this journey is me having that transcript from his court-martial. And so it started. We were just on this. I, I didn't know where to turn. I just he was having all these different and I, we were arguments and screaming, and you know what is wrong with you and you need to. Okay, I'm going to put you out. And I remember, you know, I thought that threat would definitely straighten him up, but it didn't. And I remember I did. I said leave, you have to leave the house. You know my husband, you know we're having discussions in this. He's raised him since he was six. That is his son. We never say step anything and he loves and adores him to this day, each other. They do love and adore each other to this day. And but he was right there, you know, with he said no, we're not having that in this house, you know. And so I remember that it was like a Friday or Thursday or Friday and I'm like, oh, it's gonna be cold out there. He'll be back in one straighten up. And then I'm to my husband at 5 am that Saturday morning, let's go look for him.
Speaker 2:I knew he had ended up downtown somewhere and we went to look for him and I remember that I was walking and I saw this group of kind of young people and I said do you know a guy? He has, you know, an unusual name named Pharaoh. He said, yeah, you see those boots sticking out of that doorway. That's him I just saw and I didn't recognize the boots. I didn't, you know.
Speaker 2:And so I walked down there and my husband, who had broke his ankle, was driving, you know, and I'm walking, and, sure enough, that was him laying in a doorway and I said I said this is not come on, you need to, you know. So he agreed to come and I remember he was filthy, dirty, and I remember making him stand in the garage, strip naked and throw everything in the garbage can. And you know, I gave him a towel and I remember, you know, making him come and shower and things, and I thought, okay, maybe we can start this, we can try this again. Well, it didn't work and he stayed the weekend. I said we need to go to a program. Then it was. We were looking for drug and alcohol programs, right.
Speaker 1:Because you still didn't, you weren't thinking. Mental illness no.
Speaker 2:I had read, I had seen it. I was still saying but no, this can't be, you have to be born with this. That's what I was saying in my head. He doesn't just develop at 21 years old. And so I did try to point towards the substance use. So we were trying to. We saw all these programs that were listed residential. I remember we would go. He would sit, go through the orientation part and whatever you have to do, the rules and regulation, and then he would I don't want to be here or I don't. I said, well, you need to pick something.
Speaker 2:because I was frustrated by this point, because you need some help, right? So finally it took an arrest. He was arrested because back then crack cocaine was the drug of choice in the streets at that time and they had mandatory sentencing. So he would end up in jail for facilitating a drug buy or under the influence or, um, okay, what was the third one that he would always get arrested for? Um, yeah, probably between those two, and then it would be strikes, you know, for him being under the influence, because I was like no drug dealer, his state of mind we would always drive. My husband worked downtown. We would drive through the streets looking, we would find him and you know, but he wouldn't come in for help.
Speaker 2:I soon learned that he didn't realize he was sick. I soon learned that he didn't realize he was sick. He has an added feature to his now schizophrenia, diagnosis of anosognosia, the lack of insight, and that is a clinical term. Now, dr Javier Amador, he has a great book that we always recommended, and I'll get to how I got to NAMI and I'll get to how I got to NAMI and during this period I finally said, okay, we have to now figure out this whole mental illness thing, this mental, you know because, and understand it. And I kept seeing in my, in, looking for help, this NAMI, n-a-m-i, national Alliance on Mental oh for the mentally ill, even back then, and and I, I, I, I call them one day just desperate, a desperate mother. And I remember I was in tears and I said this is what's been happening. I gave him the whole story and I thought they were going to say, oh, sorry, ma'am, you're, yeah, this is too hard for us or something you know. And he said we understand. Now, remember that was a dad that answered the phone. I eventually met him later. But he says I understand, I have a loved one and we've been through some of what you've mentioned. You know you need to take this class. And he said it's called family to family. And he says it's 12 weeks. I said, excuse me. I said a class. I said no, sir. I said I need help, I need to know how do I get my son into treatment.
Speaker 2:Everybody keeps telling me I can't just call and have him picked up. Like you know, when I used to watch TV, dr Kildare or whoever it was, you know you saw the white. You know ambulance come with the red, you know cross on it and they had that little button down, you know, and they would come and take the person to a place for help. You know, I said where's that number? You know, and, but it didn't exist, and and and, in some cases rightfully so. You know, that was the old way that they did it. You know the insane asylums of of yesteryear, yes, and so we did take the class, because even my husband and I were struggling too, and how we saw, you know, looking at this, a man's, you know, and then the mom. And so we took that 12 week class.
Speaker 2:It was Saturday mornings, two and a half hours. We were in the room with 16 other family members, and that was the first time that I realized wait, we're not alone. I realized that this was, and I even thought, I said is this something that just happens to black people? I really thought that this was something rare. You know, that was happening and I learned, and I learned, you know, through that class. It was amazing because it taught us that my son didn't have a character flaw, that it truly was a medical condition affecting his brain, that treatment was that, in finding the right treatment, that he could live a quality life, and that's what. Then it became a mission from that class and also in that class, the two teachers approached me and I said, oh, am I talking too much or what? But they kind of during a break, and they said you know, we, this class, just like we're mothers, and we were taught and certified to teach this. It's always taught by peers, it's taught by people with the same lived experience, and we think you'd be a good teacher.
Speaker 2:And I was like I have a demanding, you know, full-time job at the bank. I was a. Was I a VP? I think yeah, I was, you know, a manager. And I was like, ah, I just, you know, I don't know if I would have time for that, whatever. But I said I just, you know, I don't know if I would have time for that whatever. But I said, ok, put my name on the list.
Speaker 2:And I remember that I did go to the certification training and I met even more people who were again like me. They were family members, some were siblings, some were parents, some were, you know, grandparents who had taken the course, and they were being trained to teach it in their communities or wherever. So it just then started. Something grew in me at that time. I was like I think I'd been in banking, by this point, 30 years. I was a VP and a business systems analyst and I worked for Union Bank of California then that's the name went back and forth a few times and I was like set, ready to cruise on into retirement, right.
Speaker 2:But I remember that I was joined the board of NAMI San Diego and I was like, ok, it's something I want to do, this, I need to be here, I want to talk to especially my community. I wanted to speak to the African-American community about mental health. We treated it differently. You know, it was a secret. There's movies that I can identify where that person with mental illness was there in the family. You saw him in the back room, upstairs, but they took care of them, you know. And but no, there is a different kind of help. There is a way where that person can live, you know again, a good quality life.
Speaker 2:And I wanted to bring all this to whoever not you know, my community and whoever and so I remember asking the executive director. I said you know, I don't know what, what you know with, what my background is, what I would bring here, you know, but if there's ever a job, just you know and they had received a contract for where they were going to be able to do that course and they needed a program manager. And I quit my job, you know, at the bank, yes, with a long discussion with my husband, and I did a spreadsheet and everything you know to show him the numbers, yes, how much I could make. And I needed to make, actually to make things. And and I always am grateful to my husband that he agreed he said I knew that you needed to do something with this. I said I don't have the heart to even go to work anymore. This is what I need to do. So I did become that family to family teacher and now I've been teaching that course for still 20 years, even when I became the education director at NAMI San Diego, every year at least once I taught in person that that now it's eight weeks. But that course for families I facilitate for support groups. I still do that. I still. I'm what they call a state trainer, so I now train other people to do it through the state. I serve on the NAMI California board. I've done things through the national. I've just. I might as well have a NAMI tattoo. Yes, because I'm very much ingrained in it, even though I retired in 2018.
Speaker 2:And now I want to go back again and talk about my son and why. A lot of this, too, is because when he started to go to jail and then prison because of that mandatory sentencing, he didn't rape, kill, beat nothing, anybody. He was sitting in prison with hardened criminals because he was addicted to drugs and had a mental illness that was untreated and that it was untreated in a way where I couldn't get him into. He had to agree he had rights and we're going to talk about rights in a minute and I was like I believe nobody can believe more in rights and freedoms than a black woman. You know a person and but when it is harmful to you, there is a point in time where involuntary treatment is needed and my son would hit every roadblock. But there would be a time, once he was in the system, he would be in the mental health units. The thank God that the prisons did have units for designated for individuals like that, and I remember even serving on a state committee with a family members with the California Department of Corrections.
Speaker 2:They were doing kind of a you know to say how can we serve this population better? Not, like you, know when they're released. No one knows when they're released, what time, what day, and they drop them off at a bus stop, sometimes in another city. I've heard horror stories. Over the years it has gotten much, much better warm handoffs to reentry programs and things. I actually was appointed by Governor Newsom to the Council on Criminal Justice and Behavioral Health. We just sunset it though that committee. It had been around for 10, over 10 years, but we, you know, because I wanted to bring that family member voice.
Speaker 2:Everything I do is about bringing the family perspective so that our stories, because I hear them. I have three calls right now that I'm going to have to return this afternoon from family members who may have been in a class or a group and they're in crisis. Yes, there are crisis numbers you know to call. There's the accessing crisis line and all of that, but sometimes you need to talk with that person to help you strategize. That's been in the trenches, you know, and that's what I do. I am not a helpline. I do have a little website and I have a phone number in a you know so that people can find me.
Speaker 2:But that was not initially my intent. I wanted to be a voice of the family to the treatment community, the behavioral health community. That's why I have to serve on boards. You know several boards, you know parents for addiction treatment and healing, a wonderful organization that helped because before mental illness and substance use disorder was separate. You know they. You have to go down this path. You have to be clean and sober before you can treat this and all of that. Well, they finally, you know, merged the two and realized they need to treat both together. But that organization, you know they now do the Narcan distribution. I serve on the Community Research Foundation, which is a provider here in San Diego County of behavior health services, of Behavioral Health Services, and but it's always again about bringing that family member voice.
Speaker 2:My son has had periods of what we call they call recovery. You know recovery not cure. There is no cure but recovery means that he is maintaining his medication regimen. He got a lot of great peer training, meaning there's a peer-to-peer course that NAMI offers that tells them how to live successfully with what they have, how to set themselves up for success and live that quality life that I've always wanted for both my children. Right, he became a mentor, he became a secretary at his NA group. When NAMI San Diego had a helpline contract, he was one of the first hired, not because of me, but on his own, and he worked on that helpline and I was like, okay, thank God, we got there, this is over.
Speaker 2:He's probably close to 30 years old at this point because it started at 21 and we get jail, prison, homelessness. You know all of that and finally it seems like we were on that. You know upward, you know and, and we're over. He understands it all now. Well, anytime he stops his medication, we're back at square one, and square one is that anosognosia. I'm not sick, I don't need help.
Speaker 2:That's the name of the book, dr Javier Amador's book. And he realized he, his brother, had schizophrenia as well. And he realized I'm a clinician, I am a psychologist, you know, he's been on CNN and everywhere. Clinician, I am a psychologist, you know, he's been on CNN and everywhere. And I can't, you know, even get my brother. You know, what am I not doing right? And he realized it was how he was talking to his brother and he developed the LEAP method that stands for listen, empathize, agree and partner. And it's a wonderful book and it can work, not just with mental health just saying with anything, yes, yes, with anything exactly and but that is a method, he said, that you know can work very well with um individuals.
Speaker 2:You know in, like you said, in a lot of different um situations. But but the anosognosia part, that's what he was. He realized that his brother, the lack of insight, and he said there's a part of the brain that can be affected and it could be an accident.
Speaker 2:He said that he worked with patients who had traumatic brain injuries and he, one gentleman, lost his arm in an accident and he didn't believe the arm was gone because that part of his brain had been damaged in the accident. And he says well then, how come you can't write? Well, then, write us a note. And he says you guys have my arm tied down. He kept giving excuses. Well, this is the same thing that we sometimes, when someone with mental illness has anosognosia as well, those excuses, and we would hear that from my son. We would say but look what you just did, you were, you know this, this. And he was like well, you guys are, that was in the past or you know, it seemed, you know, it seemed to be trying to justify trying to justify, excuse me the behavior.
Speaker 1:Yeah, of course. Yeah, Okay, and we'll link. I'll link to that book as well in the show notes.
Speaker 2:Oh, great yeah, I think that would be good, mm-hmm and so and even though I was like, but remember you used to get up my son was always meticulous about how he looked his dress, get his hair cut every week and get the little lines in it. And you know the tennis shoes match the hat and you know he always, I remember he'd go shopping and get all the little polo shirts to wear to work.
Speaker 2:So he'd look professional and you know. And then here's someone that wouldn't bathe for a week and had filthy clothes on and ragged clothes that I don't even know where they would come from sometimes and basically live in the street. I don't know how many times. I can't even tell you how many times my son has lived in the street or in Balboa Park, you know, and it would be because we would try to find him or he would eventually call when he would say I need food or something. And you know I would go and we would try to take him food and try to get him to come off of the streets and get help.
Speaker 2:And my frustration, all of these years it's been what? Almost 20, it's been 25 years now because he just turned 47 years old April 22nd, turned 47 years old April 22nd and all of these years my biggest frustration has been that, well, we can't force him. He has to, you know, ask for help. We have a lot of wonderful great. I know them all because I worked within the system under NAMI, so so I know all of the resources, I know the programs, but unless that person willingly goes in and raises their hand, it doesn't work. Yes, you can call for PERT. I'm on the PERT board too, the advisory board, and I speak at the PERT Academy. You know the Psychiatric Emergency Response Team but again, a lot of times, unless that person is exhibiting a danger to self or others at that moment in time that law enforcement may be there. With or without a clinician, that person may be left behind and you know they can promise my son would do that.
Speaker 2:Oh yeah, I'll call my doctor. Yeah, I'll take my meds.
Speaker 1:And they'd just leave them.
Speaker 2:And they'd leave them. Yeah, and so this is a lot of the advocacy work that I'm doing right now with some families from across the state, some that I've never met in person before to this day. But care court was a part of that. That was families frustrated saying you know they're skirting around that. Gravely disabled. You know gravely disabled, the law, you know the welfare institution codes. Yes, those codes are out there that says if a person is unable to provide food, shelter. You know all of that. And we said look on the street, like you just said, the person you may almost ran over this morning. Why is that person in that alley? They obviously are gravely disabled. So why hasn't someone come and, in a client centered, compassionate way, giving them the services they need, even if it's involuntary?
Speaker 2:Because once my son is stabilized involuntarily guess what? Then he's able to walk out into the world and live a semi-independent life. I always put semi in there. But he is, he functions his brain still. I said all the stuff you've been through. I'm surprised that when he is stable in that medication I remember they used to call it a chemical imbalance. I don't hear them refer to it like that before, but it's always made it easier for me to comprehend what's going on in the brain, you know, and that certain levels are off and just like I have prediabetes or I take medication for something, that's because something is off in my body and I need it to stabilize it. And I don't think my family if I decided you know, I don't like that, this medicine makes me gain weight, so I don't want to take. And I don't think my family if I decided you know I don't like that, this medicine makes me gain weight so I don't want to take it. I don't think my, my, they would probably be able to involuntarily take me to a hospital if it was killing me. Um and, and this is the thing that when my son is off of his medication and in the streets, I have to plan a funeral. I said this during an interview recently I don't know if it was on the 60 Minutes one about care court, but I remember that many families say that they say I don't know if they're going to be, and I have attended far too many funerals of people dying before their family, their parents, just because they couldn't get them help, whether it was an overdose or whether it was, you know something they did.
Speaker 2:I remember a young woman here in San Diego who I knew from working with her. She was a peer that's how we normally, you know, distinguish family member or peer person with lived experience, family member or a peer person with lived experience and her, her symptoms returned and she was driving her car and she ended up in Los Angeles and the police felt threatened, they shot, she's dead and she was a mom. You know there's been horror stories. They don't always get the. No one knows the backstory. You know she was. She had her law degree. You know no one knows who she was. They only see the sensational story.
Speaker 2:So normally, what you see in the paper about mental illness, I have a dear mom friend that I knew for over 10 years that I met in one of the. She's actually wanted me to start a support group for people who have a loved one with mental illness in jail or prison and I used to do the group and she was sort of the person that brought in all the moms that she'd meet in the visiting rooms. Her son was in prison and because of something he did while in psychosis and he got out, she was so happy and unfortunately, in 2022, 2023, he took her life. Those are stories that. No, and I don't want to put that out there. Most, most statistically, people with mental illness are more likely to have violence against them. So it's not. But I want to just say, you know, we can't hide the fact that untreated mental illness can be, yes, a danger to self or others. If it's not, so why do we fight so hard against involuntary treatment? No, if someone has a melt and oh my God, I'm so sick, no one's going to call the PERT team on you. You know that's not what we're talking about. We're talking about okay, this is getting dangerous for this person. You know this person has been out in the streets no telling what kind of disease they're picking up out here. You know they're not eating.
Speaker 2:My son has been skeletal. I remember going to visit him in jail and every jail or prison he's ever been in, except, oh, I'll tell you about them putting him in Pelican Bay. I have gone to visit him because I wanted him to know he has a loving family behind him. He shouldn't be here. He used to even say that once he would get stable on medication and he might be going to a group, people would say, well, how did you get here? I know why I'm here, you know I'm a gang member or something, but how did you end up here with these? You know in this place, you know based on just how you speak, how you, what you talk about your life, and that is unfortunate. And so my fight has been one to keep him out of a jail or a prison. But it doesn't happen. In the last three years he's been in jail.
Speaker 2:When he stopped his medication, we just came out of a crisis situation with him and he is also. I was one of the first probably. I believe they said their initial care court petitions were 50 in 2023, october 2023, when it started here in San Diego County, and I'm sure I was one of those first 50, because on Thanksgiving Eve of that year I was driving downtown to the courthouse. I wanted to hand deliver that petition and get it filed because he was decompensating. I was like maybe we can catch him this time. It's in the early stages, but unfortunately that's not what happens. He didn't end up being caught in time. He was evicted from his lovely apartment in Little Italy because he had stopped his meds, he had and deteriorated and he was back on the streets, and so what do you?
Speaker 1:want me to stop. Stop me in time.
Speaker 2:Okay and unfortunately the program has not worked out. That's not what I advocated for and many, many, many families across the state. As a matter of fact, there are two bills that we are that are right now in the legislature to make some amendments to the CARE Act and the gravely disabled law, the Latimer-Pettus-Short they call it LPS law because it is still not working for people with SMI and that's a designation. There's a spectrum of mental illness and we're talking about the people who end up here on that high end that are considered to have serious mental illness, and that's where my son sits when he is not on his medication. When he is on his medication, guess what? He's way down here, in the very low range, where a person might not even know. You know, sitting and talking with him would not know that he is diagnosed with paranoid schizophrenia.
Speaker 1:So thank you for sharing that impactful and ongoing story right, we're in it, we're in it.
Speaker 1:Still right now, just coming out of crisis, and I'd imagine that as a family, you live with the hope and the fear and the trepidation all at the same time, at all times. Um, how have your extended family members and or neighbors, acquaintances, colleagues, reacted and what? What has that been like? I think I saw you on on one of the youtube interviews that you did talk about. You know, if your son had an injury and broke his leg, someone would come over with a casserole for you and, hey, what can I do? Can I drive him to his next appointment? Very different in a situation like this. Talk to us a little bit about what that experience has been like, perhaps the stigma coming to grips with that?
Speaker 2:Yeah, when we first moved here, the house that we lived in was in a cul-de-sac and I remember so everything was very visible that when we did have to call for the PERT team there was one, two, three, four sheriff's cars, you know, kind of just just surrounding the and I said, oh my God, the neighbor's going to say what kind of people are they? You know well who's living over there that requires all this police. And then I remember that I came out of the house and the next door neighbor, I said you probably saw the police out here and you know he's, he has a mental illness. I said she says, oh, girl, I got mental illness all throughout my family, you know. So that was you know. For that when I was like, okay, see, you never know. I probably should have been talking to her a long time ago about it, cause she had a lot of experience in her family and as far as our family, my, my sister, very close sister, brother, nephews and whatever, because of my education through that class and my work at NAMI, and they knew I changed careers and all of that I educated my family.
Speaker 2:So we have holiday pictures where sometimes he looks well and sometimes not so well, but he's in that picture and everyone embraces him. No, he's not in the room, he's not in the back room and he will go and come and I'll tell them. I say, you know, pharaoh's not doing so well right now, Like if it's my turn to host Thanksgiving. He will come and go as he wants. He may come out and eat with us and then he might go in the room. He doesn't live with us anymore now and I've made that kind of a. He can always spend the night, maybe if he's well, but I realize that for my husband and I we're both retired peace of mind. He can't live at home. I believe that that is something I'm preparing him for the future. When we're not here, you know that he has to know how to manipulate not manipulate, but know how to navigate.
Speaker 2:I'm trying to say you know the system and live in and that's why he's living where he is now, you know. But I want to kind of backtrack on something you said earlier about. You know those, those, those emotions that I have to live with those three. There is a study done by the National Association of Caregivers Finally, they did it in 2016 of people like us. You know, are we caregivers or not? You know there's not the ADLs and all of that, but the name of the report at the end they want to say what are we going to name this? They called it on pins and needles and that is such a true statement. Yes, they said 8.3 million people like me that I just described my story in some variation that are out here in America living like this. So we do live that way.
Speaker 2:But also, kind of into your current question, you know about the stigma, the self stigma, the stigma around it. I am all about. I've talked at churches. I I am always out there, you know, showing that this is a human condition. You know we wouldn't punish someone for having cancer and then cancer coming back, you know, sits in remission and comes back again. You know we have to show that and I said and yeah, a lot of times that I can be frustrated. Still, you know, or like, come on, not again, why would you know what? You know what happens when you stop your meds. So I do can get frustrated as well with that, because I know that it's going to be bad for him, that he is going to decompensate to a point, but I still, you know. That's why I still do what I do. As long as I can talk and stand, I will be, you know, talking about this.
Speaker 2:To make it normal, you know, to show the world or the community that many of those people and when I talk to law enforcement like I'm going to be talking to law enforcement tomorrow and I always want to put that family face I say, you know, I have a video, I have a slideshow that I use and one of them is my son doing. Well, he has a great video out there, his self telling his story that he did for the county and I show that. And then I say now this is who you're probably going to meet and he's on the streets. But I want you to remember that that person has probably has a family just like his, you know, probably a mom, a dad, a sister, a brother, someone out there, grandparents that are looking for them, maybe, or they them just not understanding that that family wants to be a support and help to them. And I can see the light bulbs. I can see it, you know, when I look in their eyes.
Speaker 2:And we do a panel actually at the Pert Academy of people with lived experience that have had law enforcement contact and family members like myself, someone who lost their loved one actually her husband to suicide, and you know what you come up on, and I know that it really makes a difference for them to see the backstory in that person, like we all have a backstory. And so that is what you know, the purpose of us doing that lived experience panel. You know, because they are the first responders, you know law enforcement. I never thought I told you the guys in the white jacket where were? You know, I thought they would be the first responders, but it is not. It is law enforcement.
Speaker 2:Yes.
Speaker 1:Are there states, perhaps municipalities, that do a better job than we do?
Speaker 2:Well, I have been to many NAMI national conferences and we speak and share and our topics are around all of that. I think it's a struggle across the country.
Speaker 2:Yeah, and even here we now have a mobile crisis response team that does not involve law enforcement. Here in San Diego it is. You know, they do come in, I think, a SUV or you know a van or something, but the person cannot be. They have to absolutely not need any kind of restraint, if you will, and by the time someone meets the criteria of a danger to self or others, that's unfortunate. That's what I'm saying. Why do we treat them at stage four instead of here in the beginning? You know stage. So a lot of times you do need law enforcement for that, for the safety of everyone.
Speaker 1:Which is that's my understanding, is that that's kind of the stage that would trigger like a 72-hour hold or something. Yes, that's kind of always what you hear right, yes. Danger to yourself or others. Yes 72-hour hold and then that's it.
Speaker 2:Yeah, and where is that? And that's where some of the other programs and even when I was at NAMI I was a program manager for the NAMI portion of a program that met people in that San Diego County Psychiatric Hospital the program is still there where the peers and they would say, hey, you know, I've been here, you know I can help you. When you get ready to leave Our program can walk out the door with you. Basically, that's something that wouldn't happen. Like I said, instead of saying, okay, discharge, here you go, here's a paper with all these things you got to do.
Speaker 2:Go to appointment here, go get your medicine there, go, you know, and and leave that to a person that is coming out, like they said, someone with the broken leg or just some surgery, and someone's going to say, now, come on, I'll help you with your appointments, I'm bringing the casserole, whatever. That doesn't happen in mental health, you know. And so they are developing a lot of programs that are supporting that transition from a hospital, you know, using peer supports, which I wholeheartedly, I really I know that that was the most effective, you know, in addition to his medication, you know, was peer supports and things like that, where you're really. You know, you have that backup.
Speaker 1:So what the care courts? You know, you hear Governor Newsom talk about that a lot and my very, very basic understanding of and I'm not even sure it's that accurate but some of the narrative says that during the Reagan, before the Reagan administration, there were I don't know, I'm going to call it just for round number 100,000 beds for mental illness in the state of California, and then by the time the Reagan administration finished, I don't know, let's say it went down by 90% or something that's when the state was maybe half the population that it is now.
Speaker 1:What do the care courts do and how can they fit into that? And then, what more do we need apart from, in addition to your stance on the involuntary stage coming way earlier? What else do we need?
Speaker 2:Well and I'm glad you brought that up, because, yeah, that is what happened, of course, when they closed those facilities, which a lot of them were horrible- and they weren't doing what they should have been doing.
Speaker 2:Yeah, what we saw in the movies. But those services were supposed to transition into the community. It was supposed to be a nice community, a mental health clinic or or a place for people you know, all spread around that no one could be on the streets. It never happened, right, so that's one thing. It never happened. Even with the Mental Health Services Act that was supposed to be a great deal. You know, that's the millionaire's tax, that one percent over a million dollars that goes into behavioral health services. That was supposed to help with that.
Speaker 2:And I'm not even saying that we need, when we say beds, not somewhere that, okay, you know you messed up three times. We're going to lock you away now forever. You can't live in the community. No, it should be community-based services and I like to, I think, in a home environment, you know, a home-like environment. But it's all about, yes, funding, and it's really scary right now because a lot of things that used to trinkle down that would end up from federal to state into the communities that could help with that. A lot of that is going away.
Speaker 2:Helping with housing, like having an apartment complex my thing is having a old taking a hotel and, you know, remodeling it to housing where, you know, I don't think grown people should ever have to share a room. I think that you know so. Everyone needs their privacy. I think they should be little, nice studios within. You know the building that, I tell you, my son lives in now. The only thing missing inside it's great, it's walk out the door. That's a whole different situation, but there's no services in the building. That is not a building, that's a low-income housing structure, but if they put the services in there, that would be a perfect place. Someone that could have oh, I think he didn't check in today. Keep a watchful eye. Yeah, keep a watchful eye. Something's going on there. Maybe we need to call his case manager, his counselor, a wraparound, but they still live and they can go and come as they please. Someone, though, is keeping an eye. That, to me, is the ideal situation Client-centered, but the clinical services and the supports are still right there on site and kind of tying that into care court.
Speaker 2:Care court is, I think, the rest of the. There were like six, eight counties that started it in 2023. Eight counties that started it in 2023. Then the following year is when the rest of the states, and it's basically it has no teeth. Let's put it like that, meaning there's a judge, there's the judge's staff, there's the county people, there's a public defender that represents my son and they have a team. You know one of the provider organizations here does the. You know the outreach and whatever work, and they're wonderful.
Speaker 2:I always want to say that the people who do the work on the ground I am never complaining about them. They can only do and work with what they have. But the structure of the pro of the program is not what it was supposed to be Like. I said we were on that 60 minutes interview and one thing that I said I hope I never have to use it and what? It was a totally different program that I had read about when I did that interview in maybe the spring of 2023, and what rolled out in October of 2023, something totally different. It turned into another voluntary program.
Speaker 1:And what do you think is behind that change? Just that people don't want to get sued, or it's not a good look?
Speaker 2:Right, right yeah there's a strong, very strong disability rights in the state of California and and they stand on the nobody should do anything involuntarily. So they go in their lawyers. You know the disability, they have a lot of lawyers. We're just family members.
Speaker 2:You know, some people are lawyers too, that that are in the family member, which is why some of the amendments that we have been trying to put forth that's who helps us craft all that in a group that I'm in, a statewide gravely disabled work group, and they're, you know, they're providers, they're, you know, a lot of people that see what needs to happen. So we have to try to go back now legislatively and make it have some more teeth, you know, but that's what we normally are fighting they are very much against. Here in San Diego County there's a patient advocacy organization, lawyers and staff that will go into the hospitals where people are on a conservatorship. Because my son was on a conservatorship once, which he needed, and I said, just maybe six months, three months, no, he was there, maybe 30 days, but because he was doing so well, they were able to convince the conservatorship, whatever judge that he should be released.
Speaker 1:He was back in the streets within four weeks least he was back in the streets within four weeks, I think. The Britney Spears thing it just occurred to me, as you were saying, that it probably didn't do the whole conservatorship conversation much good right.
Speaker 2:I'm not I don't.
Speaker 1:I can't comment on her case, but that brings everybody up into everybody's minds like, oh, it's a bad thing, Conservatorship is bad. You know, that's restricting someone's freedom.
Speaker 1:But as you describe in your son's case, like you know, as parents you're not going to let your when your child was young and vulnerable. You're not going to let them just wander around in traffic. You know you have to pull them back and then you don't just keep them out of traffic one day, you keep them out of traffic until they're old enough to where they can learn some of those things Right. Right Gradual release.
Speaker 2:Yeah, and she wasn't locked away anywhere either. She still lived on her own. She had the fact. I said she has money and and it was guardrails that saved her. You know, I don't know how you know she's doing that, but I would love to know. But it may not be good, but, um, that is is what that's the part. Right there I said but you don't understand, especially when you have a historical look at I told 25 years. So I know I can look in his eyes and know, yeah, in the beginning, yeah, I said, oh, no, did he stop?
Speaker 2:And then I'll ask my husband, like if he was when he was, you know, living at home, and even if my son was visiting or something, and I'd say, are you noticing it? Kind of, because he starts to pull away, you could pass him in the kitchen or the hallway, no eye contact, and he's a very you know, he has a very good sense of humor. So he's going to say something funny or say, mom, you want to watch a movie, or you know, whatever. You know, and all of the things that he wants, and this has to be a mind that is not functioning well, all the things he wants he can actually have if he was just stay in treatment. And I know the medication side effects are horrible. I've heard it from many people, my staff when I worked for NAMI. I had up to 15 people before I left and they were all peers or family members like myself, and they had master's degrees, they were married, they had children, but they said, yep, I carry around 15, 20 pounds of extra weight but I have a life. You know, some people can make that distinction. People with anosognosia cannot. And so he could have all the things you know a wife, a girlfriend, you know children and have a quality life, but his mind can't.
Speaker 2:And I said after 25 years, don't you think that maybe a conservatorship for him to stay on his meds? That's all he needs is a conservatorship like, kind of like the Britney Spears when hers was about money though, because she had a lot of money, but for him it would be that they would never see him in a jail again. They would never, just like, like my younger son, never been to jail, never been arrested, never. You know he was that kid, you know he was that man, but never would he have ever hit the jail or prison. He probably has a rap sheet the length of this room, but it was all behind whenever he was and I said you notice he never gets arrested when he's on his meds. So you know there's so many historical things that can be used to me to say, yeah, we've given you a whole bunch of chances to do it voluntarily and it seems like you want to be ending up back at the same spot again.
Speaker 1:We're going to help you out with that again, we're going to help you out with that. How much of your conversations intersect with entities who are working to try to address the issue, which seems almost unaddressable, of homelessness just in our county, our state and our country, because there's I mean, you described Pharaoh's journey and recursively involved homelessness.
Speaker 1:I'm sure that, extrapolating from that, there are 5,000 cases down the hill from here that are very similar in a lot of ways. Right, right, how much of the work that you've seen of, let's say, the city of San Diego trying to address homelessness also intersects with NAMI and that work, yeah, understanding, I know you're working with Training Pert. That's part of it From a solution standpoint.
Speaker 2:Yes, all of it intersects the programs at NAMI. Nami opened up a clubhouse here downtown, not too far from here. That is for people who are homeless, that may have mental health issues. They can come in there. They even do the showers they do. So NAMI has become a solution space. It used to be education, advocacy and you know like support groups.
Speaker 2:Yes, yes and things, but now they're in the community doing the work. So, yes, they do work with Mayor Gloria and the Behavioral Health. They are part of the system now that is also providing services. We have other clubhouses as well in San Diego County, and so, yes, it is about what they always stood for, you know, education, support and advocacy, but they also now are doing the on the ground, hoping to touch but that is one way, like they say the homelessness they do have. You know, one residential home. Actually, it was a person passed away that had started this home many years ago. It's in North County though, but she willed it to NAMI to say continue this work, and it would be great. But what does it always take? Money, money.
Speaker 1:It's always about the money it's money, and it's also people being willing to have it in their neighborhood.
Speaker 2:Oh yes, yes, the NIMBYism is real. The NIMBYism is real.
Speaker 1:Yeah yeah, recovery home, whatever. It's nice, but just don't put it on my block.
Speaker 2:Oh, yeah, yeah. And actually where Pharaoh was just a few months ago, it was a very quiet little street and they normally under what they call the ILF, the Independent Living Association. They are homes. They're not facilities or big hotels, they are home-like environments where they get hot cooked meals and so on, and the residents are, yes, of course, allowed to go and come. But they say you know, at night you got to turn the, you know, you know you have to be in by a certain time, you know can't be loud and just like you can't normally. So that is another solution. We do have those, but it's always not enough. There is a lot of, like I said, great things going on in San Diego, but it is not enough a lot of times.
Speaker 1:So if you could wave a magic wand, it sounds like you would change the structure so that there could be that involuntary intervention early. There could be that involuntary intervention early, obviously more education ongoing to remove some of the stigma. It sounds like when you were in your own crisis point of like, hey, my kid needs help. Now they're like here, take this class. That you would recommend that for people, right? Yes so we'll definitely link to Nemi's website and those resources.
Speaker 1:What about the role of culture in the way that we respond to issues of mental health? Do you run into? Depending on what community you're working in? Do you run into? Depending on what community you're working in, different communities must have different reactions and understandings of mental health, I'd imagine right.
Speaker 2:Yes, absolutely. In my role at NAMI when I was the education director, there were five threshold languages. So whenever you had a contract with the county you had to make sure you provide it. So I got to work with many communities. Like we had a contract with a Vietnamese social services organization where the material was translated to be in there and not just word for word. It was like culturally it needed to be so to serve the Vietnamese community. We did it in Arabic. We have a large Chaldean population, especially in the East County. I worked with that agency. They were trained and they wouldn't take a training from a peer. Remember I told you the NAMI programs are peer-to-peer type training. They said, oh no, that person has to be a person who is a doctor or what.
Speaker 1:So that's how they did that cultural piece.
Speaker 2:So that's how that one was taught for that Spanish, of course we did, you know Spanish population, we did it. And I remember that we were told, because it said two and a half hours and we would you know, we didn't have enough funding to, you know, rent all these different places because we used to have to do 20 classes a year and for the families and another 15 classes for the peer community. Well, that was a lot of spaces going on for eight and 12 weeks. Well, that was a lot of spaces going on for eight and 12 weeks, and so we didn't have money to do that. So we would be at the mercy of, like a church that would let us, or a community center, something that was free. Well, a lot of times we said, yes, this is a two and a half hour class with a half hour for, you know, cleanup and set up and whatever. Well, and I remember one of the Spanish speaking facilitators said to me they said you know, we like we talk, we have to talk, we have to have food, we have to. So we needed more time. So we knew we needed to add more time. So we always, you know, addressed it in that way.
Speaker 2:So, yeah, that was English, spanish, arabic and Vietnamese. We had one more, yeah, because the Arabic was for Caldean, and that was one more. Yeah, I know, we said Vietnamese. Yeah, because I just remember. Yeah, maybe that was the five, including English of course, but that was the most. That was the best thing I used to love to go to the graduations. Is that the last class of a threshold language? But older adults, you know, just like my son now is in that category of an older adult living a serious mental illness.
Speaker 1:Yeah he's.
Speaker 2:You know, it was really 50 and above, but he's almost there, and so we did a class that was geared towards that population. They have different needs, so that's cultural too. So yeah, so that's cultural too.
Speaker 1:So yeah, yeah. It's a fascinating study of humanity right and the role of communities, the role of family. How has your younger son handled this? It's got to be an interesting balance at home, right? Oh yes, it's going to be an interesting balance at home, right? Oh yes, to raise a son, to raise both your sons, who you, you, you each, you, you love each of them, 100 with 100 of your being but that's what it means to be a parent.
Speaker 1:Yes, but they have different needs. And so did you ever find yourself looking to your younger son and going oh man, I man, I wish you know we need to invest more time in you, but we have this, just this kind of burning building over here?
Speaker 2:Yeah, yeah.
Speaker 1:How does, how does a family manage that?
Speaker 2:We have talked about that recent, and one of the things that I'm glad that we did is he was too young to come to family, to family. So everything we learned, we come home and tell him and talk to him. I wanted him to understand what was going on with his brother. Then he went out of state to college and I remember when he came home, my son was still then living at home with us and he, as soon as he left, he just hit the bottom, you know. As soon as he left, he just hit the bottom, you know, and I said, oh, they pick. And I remember he was sitting in his dorm and he cried and I hadn't seen my son cry since he was a little boy, you know, something scraped his knee and I said, oh my God, I'm never going to tell him again. When he's not doing well, he just it hurt him so bad. And they have a lovely relationship right now. But when he was younger I remember he played all kind of sports and whatever. So my husband would go that way with him, I would be over here finding, trying to do whatever. And I remember he said and I asked him, you know, because I remember that our former CEO of NAMI was did it wrote a book actually about the sibling. She was a sibling and she wrote a book and she was interviewing siblings of individuals. And I remember he said I just remember you weren't at a lot of my games on Saturday, I just remember you weren't at a lot of my games on Saturday and that that kind of Dad I know dad was there but you weren't there, you know. So I did it, did take away and I even and I'm so glad you asked me that, because a lot of times I'll go through this story, this, so I make sure that even in my presentations I have family pictures I said, yeah, I have another son you know, who's a great guy, you know, and I want to talk about him some you know a little bit as well. So I always try to remember that, yes, that there is another son, that another family member you know, immediate family member that's also has lived this.
Speaker 2:You know, in his adult years he has gone to clean out hotel rooms, motel rooms, apartments, went to the streets and I remember he, when he first came home he was working downtown and he said, mom, he where he lived, he would ride the trolley to work and he said I left earlier today because I wanted to stop at my bank and get some money before I went in and I get off at the stop earlier. And then I just walked the rest of the way. He said literally in a crosswalk, and he looked and he said Pharaoh, it was his brother. I said but God, I'm a spiritual person. I said that's God. And I said what he said. Yeah, he'd been out there homeless at that time and he said come over here. And he said we sat down and he said let me call mom, come on, let me get you some help. Pharaoh's wrapped in the blankets. And he said he says ah, people out here, look out for me. He said so I gave him some money and I you know, and I just can't imagine what the rest of his walk was.
Speaker 2:You know that day, but he's had to live through this right along with us. You know he loves his brother and when he's doing well, when I see them together again talking about sports and movies and women, and you know just everything, you know and the laughing, and sometimes I see the dynamic change. He's the older brother. Come on, pharaoh, let me put. I'm going to take you some food, I'm going to bring you this. I'm going to do this and then, when he's well, again I watch it go through, because Pharaoh's very thoughtful and very you know when it comes to. Sometimes I even found myself he says well, mom, this is. And I said, you know what? I never thought of it that way. So he's got a very good and I can see it switch back where the younger son is getting advice from his older brother again about life stuff. But I see it go like this the dynamic of who's sort of the? Yeah.
Speaker 1:Does Pharaoh have the? Well? I know you talked about the lack of self-awareness. That's a medical condition. Does he have an understanding of his biological fathers?
Speaker 2:Yes, Because after he left our life, I didn't know what happened to him for 27 years until he died. To him for 27 years until he died. Yeah, we found out that he died because he did leave part of his. He left his, what it was left of his military whatever to him. That was a shock. They didn't know how to find my son because they had our address up in northern California. But eventually they found him and I was like who is this? Somebody died. My husband was like because he worked for the government. He said that's federal government life insurance. That's how we knew that he died. But it's been in the last 10, 18 years, 18 years.
Speaker 2:Oh, and part of this story too and this is another God part it was about 15 years of this journey with Pharaoh. I did a talk at just a little class or something and a person followed me out of the class and she said I help veterans get their discharges upgraded. And I said, yeah, I've heard that you can do that, but, gosh, every time they just give us a five. She says no, no, no, it's my job, that's what I do, and so I had that transcript. I had all of his stuff that I kind of held on to. That wasn't lost and Pharaoh had. I gave him my favorite office supply as a sheet protector. My Pharaoh put it all in there and in a big binder. We handed her that binder. It took her a year and a half.
Speaker 2:He got his bad conduct discharge upgraded to a 100% disabled veteran. So he now has a source of income. He can receive his services at the veteran vet VA hospital. He can shop at the commissary. You know, this was just a great, great and still and he was again doing well, like I said, he has these periods. It could be three to five years of maybe doing, but in recent years for some reason he's. He's just any cycles.
Speaker 2:Yeah, shorter cycles. And he says it's the side effects of the medication which are horrible. I mean, one of them even had a commercial about that medication. You're the lawyers If you've been taking this medication. It makes men grow breasts, you know. So who wants to stay on a medication that does that, you know. Or he said you just feel sedated all the time, you just feel I don't have any energy. I don't, you know, and I can't imagine. And you have to take that, the red, basically the rest of your life. You know. Yes, there are long acting injectables which make it like you don't have to remember the pills every night, but that has the same side effects in a lot of ways. And then one of them is tardive dyskinesia. You see the commercial on TV for the medication now that can help with the tardive dyskinesia.
Speaker 2:They didn't have that Well, it's involuntary movements, you're sitting there trying to be on a date and your face is twisting up or whatever you know. So you can't imagine. You know that that's having to live with some of those side effects. It's not just like weight gain or something like that erectile dysfunction all these things that come along with that medication. So, yeah, you, you might stop it, but, um, again, only think a person with, because there are many people that stay on them you know, in spite of all those things, but a person with the anosognosia feature.
Speaker 2:You know that still is difficult.
Speaker 1:Well, you've been so generous with your time and your story and your openness and candor about your family. It's very touching reflecting on and listening to you these moments when serendipitous things happened in your life. You know one of them being running into this woman who devotes her time to getting benefits figured out and discharges figured out for veterans and other experiences that you've had.
Speaker 1:I have one last question for you Before we get there. Do you have anything that has been kind of kicking around in your head that we have not yet touched on in this conversation that you think would benefit listeners?
Speaker 2:No, I would just want to leave them with, even if you don't have I mean, you probably do. The statistic is one in five. You know people, there's some form of it around you.
Speaker 2:Be the casserole person, you know, even if it's for the family, you know that's a great t-shirt, yes yes, and also, you know, with someone that's have say, I, you know I don't understand it, but I can listen or I can take you for a cup of coffee not maybe the individual or the family member, just kind of going through it. And there's even an education-like program. It's called Mental Health First Aid and it's just for the general public to understand what mental illness is and is not. I always say so. I would just say to have a more open mind about it.
Speaker 2:We don't want anyone to go up and say, oh, that guy's struggling, let me go over there and try to help him. No, we don't want anyone to go up and say, oh, that guy's struggling, let me go over there and try to help him. No, we don't want you to do that, um, but just just, you know, kind of have an open mind and understanding about it and if you want, educate yourself there's a lot on the internet now as well and but make sure you get it from a good source you know, yes so the the last question is a hypothetical so let's say you're given the opportunity to create a billboard on the side of the freeway.
Speaker 1:what does your billboard say to the world about the journey that has become your work, that has become your work, that has become your life? What do you want the public as they're driving by, wrapped up in their own minds and their own worlds? What do you want them to take away? Other?
Speaker 2:than be the casserole person. I would want to have a message about that. Mental illness is a treatable medical condition. That's what I would want to say that it is not a person that just needs to shake it off and get it together or whatever it takes treatment, and so just to remind people it's a treatable medical condition. The definition of mental illness is this is a fact sheet. It's longer than what I'm about to say, but it says mental illness is a medical condition that disrupts a person's speaking, feeling and ability to relate to others and daily functioning. Just that sentence. Right, there is what I always start with in my presentations as well, because I want to remind people that it is a medical condition. So that's probably what my billboard would say, and on a personal, I would probably say 25 years later, and I'm still standing. You know, that would be for my personal one.
Speaker 1:Thank you so much for your time and your wisdom and your energy and your hope in the midst of challenges. It's really been inspiring for me. Thank you so much for your time and your wisdom and your energy and your hope in the midst of challenges. It's really been inspiring for me. Thank you.
Speaker 2:Well, thank you for inviting me. Yes.
Speaker 1:I hope you enjoyed this episode of the Hangout Podcast. To support our show, please click the support our show link. If you choose to make a donation, it's much appreciated. Any amount, however small, will make a difference. I want to emphasize as well that this show is entirely private and separate from my day job and as such, all opinions and views expressed herein are mine and mine alone. Thank you for coming on in to hang out.
