Grieving the Life You Lost Due to Schizophrenia

Comcast reaches more than 65 million homes and businesses with the nation's most intelligent network, powered by AI and designed to optimize every connection in real time. And that really matters when millions are tuning in for the biggest live events. With ultra low latency and the capacity to handle massive demand, Comcast helps deliver every moment in stunning 4K, so viewers stay close to the action without missing a minute. Learn more at ComcastCorporeation.com/Network. You're listening to Inside Schizophrenia, hosted by Rachel Star Withers, an advocate who lives openly with schizophrenia. We're talking to experts about all aspects of life with this condition. Welcome to the show. Welcome to Inside Schizophrenia, a helpline media podcast. I'm your host, Rachel Star Withers here with my great co-host, Gabe Howard. Coping with schizophrenia is a lifelong, draining process that affects all aspects of a person's life. Living with the diagnosis of schizophrenia means that you and those around you will experience multiple losses as you learn to navigate this disorder. Relationships, employment, education, performance, independence, and even a sense of self can all be taken away. It's normal to grieve the life you or a loved one lost due to schizophrenia. Today, we're going to be talking about what that grief looks like and how to keep going. The reality, Rachel, is this is what I like to call the before and after effect. Something happens that creates a clear demarcation between before that thing happened and after that thing happened. Many people are familiar with the before and after effect in the positive light, before the kids were born, before we got married, before I got the job. But the reality is, is the same thing happens over on the trauma side. After we lost the job, after we lost the house, after the kids moved out of the house, after somebody that we loved died, there's before your life, and then a trauma happens, like being diagnosed with schizophrenia, or learning that you've been diagnosed with schizophrenia, and then there's after that, and it just creates this line where you start to view things before and after that event. Joining us is Polly Vandiveered Benjamin, owner of Earth Star Heart Root, specializing in holistic, soulful, metaphysical, self-healing, a poet, and who lives with schizophrenia. And they're going to be sharing with us their ways of what happened in that before and that after of that diagnosis of schizophrenia. I have to imagine that this is a much more complex topic than people realize. Rachel, can you help break it down for us? When we're talking about schizophrenia, or any serious mental disorder, mental illness, it gets really complex because you're talking about actual losses, whether it's functioning, cognitive ability, and then symbolic losses. Your hopes, your dreams, if you had dreams, let's say of a family in the future. All of this now is affected by the schizophrenia. Let's say my dream is to get married and have kids. Knowing that I have schizophrenia, that just complicates it of, okay, how do I find someone? Do I tell them up front that I have schizophrenia? What if I don't tell them right away and then when they find out they leave me, like just that complicates everything? When we're talking about the life you lost or that you lose due to schizophrenia, it's also so unpredictable. It's not a one-time thing. It's not like I can be like, okay, well, this happened and now I can rebuild everything. Because the schizophrenia doesn't go away, it keeps on. In many ways, this is what makes it so difficult to treat. Family and friends really get involved in this too, especially with my parents. What comes up a lot is what will happen to Rachel after we die? It was going to take care of Rachel. What's going to happen if she can't live in the house? We have to defend her to make payments of what if she's not able to do that. It weighs a lot on those loved ones. My parents, I'm sure, they're probably like, oh no, what is Rachel's life going to look like in 20 years? Even if I don't want them to think that, I know that they naturally do. They naturally worry about that because yeah, there's a major part of me that is the schizophrenia. As our listeners know, insides schizophrenia is a medically reviewed podcast and Rachel does a lot of work reading studies and talking to doctors and learning a lot about these subjects. But I'm just curious, are there actual studies on this for you to quote Rachel? Unfortunately, there are not many. The life that you lost due to schizophrenia isn't a huge research topic, which is crazy. Well, you think about how many disorders and things there are in this world and how many websites there are, how to get on, how to live your life, really schizophrenia-wise, just there isn't much. One study I found that looked into schizophrenia patients and the losses they experienced found that the one that bothered them the most was relationships. And I agree on that one and not so much even just romantic relationships, but just like I was describing earlier, that family relationship, the dynamics change. I know that family dynamics are very important to our listeners. Many of our listeners define as caregivers of people who are living with schizophrenia. So those differentials in family dynamics is no small thing, Rachel. And that potential life that was lost and it's even odd to say that game because it's like, I still have a life. It didn't go anywhere. But yeah, the outcome has changed. I'm not where I thought I would be at age 16, at age 20, at age 25, at age 30, daily functioning has changed for me quite a bit. Independence, employment, performance, and things, even your beliefs can change with these different diagnoses, your dreams, future plans, and personal identity. All of these things can be connected to schizophrenia diagnosis. All of this of course begs the question, Rachel, do you personally feel a loss? What's different with my situation that so many other people with schizophrenia is that I don't have that very distinctive before and after. I grew up with childhood schizophrenia, hallucinations, so I've always kind of been under this cloud of it. And at the same time, I would say there's been definitely psychotic episodes that happened that were very dramatic and the beginning before that and what I was left with after are completely different. One of them is the daily functioning. That's something that I've noticed over the past few years has really deteriorated and it seems to be speeding up these past five years, I can notice the daily functioning. I notice that my speech slurs a lot more. My independence, you know, I used to be able to work like three part-time jobs at once and that's not something that can happen right now. It's hard enough for me to keep up one most of the time. And I think back to those relationships, there's even like the subtle relationship of I feel like I'm the sick one in the family. And I have two parents who are in their late 60s and I feel like I'm the worst off. Like I'm the sick one everyone worries about. Like at this point, you know, you should be worrying more about your parents, not the adult daughter. Are you saying that you compare yourselves to people who do not live with schizophrenia? Is this a comparison in your mind? Absolutely. I compare myself to other people in my own age, younger than me, people in like their early 30s and I'm like, wow, you own a house? You're married with three kids like, wow, that sounds like a lot. I can't imagine doing one of those things. That blows me away. But I also compare myself to other people with schizophrenia. I mean, I'm looking at someone we both know Gabe and who has been on the show before Jason Jepsen, wonderful, wonderful person and we got to talk to him a few months ago at an event and they're talking about his apartment he's moved into and I'm just like, I was jealous. I was like, wow, Jason's doing like amazingly well and that's awesome for him. But then I can't help but compare myself and be like, I am not doing that well. I'm not living on my own. That's not a possibility for me. Even like other people with schizophrenia, I can't help but compare myself and be like, oh boy, that's yeah, maybe I should be doing a lot better than I am. Intellectually though, are you aware that these are not fair comparisons? It sort of reminds me of every high school graduate or college graduate that the day one of their job, they look around at their parents and their grandparents and their aunts and uncles and they're just like, oh, well, my house is not as big as your house and they're like, we've been working 40 years. You literally just got out in the real world but you expect to have the identical amount as me. It's just not a fair comparison. Intellectually, yes, I know that that's silly to compare myself to other people with or without schizophrenia. I still can't help but do it. Whatever I'm even in like a social setting, I always feel awkward because I'm the only one there in that social setting who lives with their parents and it's even hard for me to want to like share parts of my life because it is clouded with that. It's just a human reaction to compare yourself to others and where you wish or where you think you should be. So where do we go from here? What are the next steps? The frustrating thing, Gabe, is that the next steps are always going to be different because this is going to happen multiple times. When you think about someone's first big psychotic break, a lot of times you end up in patient hospital care, whether it's for a few days. two weeks, sometimes multiple years that you're there. And having to come out of that, your whole life has changed. Just anytime, even if you are only there for a few days, coming out of inpatient, your life has completely changed. For one, you might now be on a lot of medications that you weren't on a few days before. Your job might know something, your family might know something. You might have to be like, "Look, I can't work for the next two months. I have to move in with someone." In a way, you lose everything because your world has changed dramatically. A quote from someone with schizophrenia was, "In my eyes, my life was over. Everything I had dreamt of doing and all of my aspirations in life were now non-existent. I felt completely nullified." That's a very common feeling amongst people with schizophrenia when you get that diagnosis and when you realize, "Wow, my life is now going to be completely different than I thought at one time it would be." So is this about accepting your diagnosis? Is this just about understanding that you're now sick or is it bigger than that? For anyone dealing with a serious mental disorder, it's bigger than that. You can't just accept schizophrenia and it's like, "Okay, a light switch. Okay, now that I have schizophrenia, okay, everything, I'm able to deal with everything." And I hear this a lot from loved ones. They'll email me and say, "Rachael, my person, the person I care for, they're not like you." They haven't accepted that they have schizophrenia and I understand what they're saying. They're saying that that person might be a denial so they're not getting help, they're refusing help, but to love ones what I want you to understand is that accepting you have schizophrenia never ends. I have accepted that I have schizophrenia over and over and over. Honestly, it's kind of like a daily thing of, "Hey, I want to go out and do this stuff, but I got to accept the fact that I probably can't do certain things. Even something simple is going to work for 10 hours. I have to be like, wait, right now I feel like I can do that, but honestly, I know that in two hours, I'm going to be in rough shape. Accepting that you have this diagnosis is something that you have to do repeatedly throughout your life. And I think it's something that caretakers and family need to also do. They have to realize that the person with schizophrenia might be getting worse, and their lives could completely be changed in another second, another psychotic episode, or if they're cognitive functioning goes down. It's also important to understand from a family perspective that your opinions, your actions and your words can drive the ultimate outcome. My father is now 74 now. In his heyday, he was a rough and tumble truck driver, he drove a semi truck, he had lots of energy, boundless muscle, nothing could stop him. But now he can't walk long distances without his back hurting. But my father hasn't fully embraced that. So one of the things that we as a family can do is just build in the brakes. Hey dad, I want to stop for a diet coke. Hey, why don't you sit here while I shop over there, we can scout out these things. As far as he's concerned, he's just having a normal day out with his family. But we've run some interference for him so that he doesn't have to say, hey, look, I'm too old to walk all day, which is something that his machoism won't let him do. We need to find those things for our loved ones. And I will say, Rachel, we do need to, just like my dad needs to accept that he's aging, we do need to accept that help as well and be an active partner in it. But so often what we do is we say, well, dad, I don't understand why you can't walk and then try to run him around the mall for 12 hours that he's no longer capable of. We do this to our loved ones with schizophrenia as well, where we just set the bar so ridiculously high, we've almost assured their failure. What I love about that example you just gave was that it was very clear. You're in this together. You're stepping in saying, hey, dad, let's take a break here. Let's stop here. You're not making him feel like he's a burden. You're part of the situation. You've ingrained yourself in the, hey, this is something, this diagnosis, this situation is something we're dealing with together. You being able to just offer something like, hey, let's take a rest and making it seem like you need it versus the other person that takes so much of a burden off that other person. No one wants to be the sick one. If you as a loved one are able to make them not feel like they're the one dragging everyone down, do that. Even if they don't voice it. I don't say this stuff to my family. Lovelace caretakers, put yourself in their shoes. How do you think they feel because sometimes they're like me and they're not going to want to tell you that they're struggling with those issues. Of course, refusing to acknowledge that you're struggling with issues is not a far cry from refusing not to acknowledge that you live with schizophrenia. This is where our paths are going to diverge a little bit. There's obviously lack of insight, people who don't understand that they're sick. We're really not talking to that group because that's a whole separate issue. We're talking to the people who are able to understand that something may be wrong, but much like the example of my father just don't want to admit it. It's not a lack of insight issue with my father. It's machoism with my father. This type of person that we're talking about, they understand that something's wrong. They're able to communicate with their medical team. They've heard the diagnosis of schizophrenia and it's not that they lack insight about it. It's just because of the stigma, the discrimination that can also be self-stigma and self-discrimination. It's not just the people with schizophrenia who have kind of lost part of their life. The family is affected, especially when you have that parent child dynamic. A lot of times, parents of people with serious mental disorders, they experience grief similar to parents who have lost their children, who have children who have passed away. However, the parents of those with serious mental illnesses lack the closure. One thing they stress is that they never know when it's going to end. Their loss is almost symbolic, so it's not as serious. Which I can understand because you're thinking, "Well, you still have your child." I get that completely. It's like, "Well, what are you complaining about? At least you have your child. At least you have this loved one still in your life." It does weigh on people, and it can be hard when you look and think, "You had all these great dreams for your child, and that's not going to be happening now. It could be as simple as, "I thought they would take care of me in my old age." Now, I'm at my old age, and I'm still taking care of them. That's a lot to deal with. This is disturbing, but I do want to say it because I think it's important. When parents have a child that's passed away, many times to deal with their grief, they reconstruct their identity as parents. Whereas if the child has a serious mental illness, serious mental disorder, and they feel that they've lost the child that way, the parents tend to change the identity of the child. They might believe that the mental illness, that's not truly part of my child. They'll separate it in their mind, or they'll start viewing the child as a stranger or non-existent, "Well, this isn't my child anymore. My child basically died when they got the diagnosis." I think it's important because there's so many people with schizophrenia out there who have been cut off by their family, or their family refuses to acknowledge that how bad things have gotten with the schizophrenia, and it wasn't until I read this about how parents handle grief of children, I was like, "Oh, well, wow, that explains so much to me." Because so many times in the past, I would just think those were horrible people. How could you possibly just cut your child off when they have a very serious illness? How could you cut them off? Reading these articles that this is a reaction to grief that made a lot more sense to me. All I could say is I'm not saying it's right, but I do hope if you're someone out there who has experienced this, it might help you understand a little bit more. It's not the right way to process that grief, but that might have just been how that person handled it. One of the reasons that inside schizophrenia exists is because what people understand about schizophrenia is so incredibly limited, and it leads caregivers, care partners, family members, friends in the general society, and people living with schizophrenia to make the wrong choices because the information is incorrect. I would put out to the audience right now that grief is exactly the same way. We believe that grief is something that, quite frankly, it is not. It looks different in different people, people respond to it differently, and we can grieve all kinds of things. I think it's important, Rachel, that we actually cover the stages of grief because I think that people diagnosed with schizophrenia go through it, and the people around them go through it as well. There is no right way to grieve. There is no step-by-step, this is what you need, this is how long it takes. You should be over this in a month, you should be over this in five years, like that's not a thing. We often hear about the stages of grief, and of course those kind of change, depending on who's talking about them, but the five basic ones are denial, anger, bargaining, depression, and then acceptance. What you need to understand is that when we're talking about these stages in relation to a diagnosis, they might not play out in that order, some of them might repeat. As you go through life, you're going to have to go through those five stages again for different issues. When I came out of college with my bachelors, there was an opportunity on the table that I almost didn't tell anyone about to get my masters. But the truth was at that time, I had to accept that I barely made it out with my bachelors. I can't keep this up. I need a while off. So these different stages, you might go through multiple times. So how do we do with this? What's the first part? I acknowledge it. Look, I lost blank due to my schizophrenia. I miss it. I wish that could have happened. And this is how I feel about it. So if I want to say, I lost the chance to get my masters due to schizophrenia, yeah, I miss that. To me, it kind of sucks. I feel a little bad about it, but it's not the end of the world. And to everyone out there, yes, I know I can still get my masters. I'm just referring to that one situation of the opportunity I had. You need to let yourself feel you can be upset. You can be angry about things. You can be angry that your marriage fell apart. Your relationship with someone fell apart. You lost your fiance to all of this. You can be upset about that. Yeah, it's not fair. And you need to let yourself feel bad. Because ignoring it, we all know it doesn't make it go away. So that's the first step, acknowledging what you lost and say, hey, how do I feel about this? I actually confront this. I really think the impetus for this is that a lot of people don't want to acknowledge it because then they would have to admit that it's real. And again, this is not a lack of insight issue, but they don't want it to be real. They don't want to be crazy. They don't want to have a compromised life. They don't want people to look at them differently. They don't want to feel badly. I mean, sincerely, I cannot be clear enough with those who are listening that nobody wants to be schizophrenic. It is a scary diagnosis with a lot of stigma and discrimination attached, stigma and discrimination that exists in society against people with schizophrenia is also absorbed by the person with schizophrenia who is thinking it about themselves. So I have to ask you, Rachel, when you accepted that you lived with schizophrenia, does that mean that you accepted that you were crazy or a whack job or anti-social or that you rocked back and forth in corners drooling all of the stereotypes that people believe? Did you feel like you were accepting those as well? What sort of the common ground in the schizophrenia community? Just like schizophrenia is a spectrum, schizophrenia encompasses all those things. And I unfortunately, and it's probably not good, that I use it as a joke a lot of drooling in the corner. And I use it as a joke because I have been at that point. And that's why it's funny to me is people be like, they see me speaking clearly and think, oh, well, that could never be Rachel. It's like, no, no, that absolutely could be Rachel and it was last night. But that's why it's funny to me. I have come to accept that that is a realistic thing for me. Ultra running shoes are all about space, the space to go further, to feel better, to do something you never thought possible. And this space starts with ultra fit. Unlike traditional running shoes, ultra fit gives toes more room to move naturally. So every step is strong, balanced and comfortable. Whatever you're leasing up for, stay out there with ultra. Shop now at ultra running dot com, that's ALTRA running dot com. Hey everyone, I'm Gabe Howard, host of the Inside Mental Health Podcast, an award-winning weekly show from Healthline that breaks down complex topics around the world of mental health and psychology. Learn from experts you can understand with me as your trusty guide to ensure it doesn't evolve into a boring academic lecture. We cover everything mental health. So pick the episodes that interest you and remember understanding your mind is the first step to a healthier you. Subscribe and listen to Inside Mental Health on your favorite podcast platform. And we're back discussing the grief people feel when diagnosed with schizophrenia. For me personally, accepting that I can go from speaking barely clearly and coherent to, and you know me Gabe, I've given speeches, I've been on stages in front of thousands of people, no problem. And then I've also completely blown it and my speech went away from me. And I've been like stumbling over things. And I have to accept that both of those things are true about me. I feel that once you at least accept that yes, I can be amazing and yes, I can be terrible at the same time, it is a weight off your shoulders. One of the ways to do this is identifying with other patients, whether it's support groups, learning about schizophrenia, reading other people's stories, doing things like this listening to the podcast and getting to hear from other people with schizophrenia, how their life has went, how their life is unfolding, their plans for the future. I just love talking with other people with schizophrenia because their lives are so different than mine. And I love it because they'll inspire me. I think of all the great guests that we've had on the show and I'm just like wow, they're doing so many cool things I would have never thought about. Coming to terms with having schizophrenia, it's a self-journey. One thing that is a little bit of hope is that you kind of at some point reach a chronic stage of psychosis, meaning that you're used to schizophrenia, not meaning chronic because then you're constantly hallucinating but you've been on this merry-go-round for a while. And when people get into this stage, it's been found that oftentimes they report being more optimistic about the future and that they believe that the worst is now behind them. Not meaning nothing horrible is going to happen in the future but they know how to handle it. One person was quoted as saying, "After more than 40 years of psychosis, I can now say I feel better than I have ever felt in my life." That is an incredible quote to me. After 40 years of psychosis and they're saying that this is the best they've ever felt, that's amazing. And I could say for my own life, looking back where I am now is yeah, this is the best I've ever felt with my schizophrenia unless say I'm going to feel even better in 20 years. To me, that's very hopeful. I think that's something really exciting for people with schizophrenia, that hey, you're going to get used to this. And the stuff that used to bother you when it happens again, you're going to know how to handle it. Does it still suck? Absolutely. But, you're getting better at better at dealing with it and with accepting what's coming up next. Rachel, we have a great guest for this episode because while we certainly appreciate all of your perspectives, you also pointed out that no two people living with schizophrenia are alike. Yes, joining us is Polly Vandiveard, Benjamin. One note is that Polly uses they, there we, pronouns. All right, let's go ahead and play that right now. I'm excited today to be speaking with Polly Vand Edward, Benjamin. Now talk to us a little bit, Polly, when did serious mental illness into your life? Yes, so that first was back in the early 90s and what had happened was we had moved out of our parents house to go to college for the first time, you know, there's a lot of anxiety and stress and you're learning to live on your own. Well, ours got to the point where we were getting very, very paranoid. We were having hallucinations and delusions. Now we were diagnosed first with the bipolar, so we moved back in with our folks and when we moved back in, we started seeing a talk therapist, we started seeing a psychiatrist and we were put on some medication for it and that did help to a point, but the thing is that back then we were unaware of any kind of support groups, so we really were still keeping a lot of our delusions and hallucinations and like, oh, the radio is talking to us and the TV to ourselves. We couldn't really come out and talk about everything about ourselves. We suppressed it. The medicine and the bit of therapy we had was helpful. We met who was going to be our future wife. We got married. We had kids. We had been looking at our life like, oh, things are going well now. We're starting a family and everything's fine, so we went off our medicine too. And that was fine for a while, but then once the stressors of raising children and we started to go through the bores and all these other things started to come into play, it was very difficult for us to, again, come to terms with how our anxiety was manifesting itself and the hallucinations and the delusions and everything were coming back. When we finally got help, it wasn't until after we suffered a psychotic break. That's when we were first diagnosed with schizophrenia. What I find so interesting about your story is that you have that first psychotic episode in college, first time you're in college. And you're able to get help, you're able to kind of come back from that, you're able to start this whole new life, rebuild everything, and I think everyone would be like, okay, he's cured. Right? I just feel like if you're on the outside looking in, that's the assumption. He's cured, he has completely recovered. Right. Right it off. Yeah. Like, that was a one-time thing. No problem. Smooth sailing for the rest of your life. Right. And then it all falls apart a second time. Yes, and at that point when we really hit our rock bottom there, because with the divorce and we thought we were going to lose our kids, once we got the treatment, we needed and we were able to actually speak with other people in our group therapy. And in the group therapy, we found, wow, there's other people like me. I can talk about this and this actually feels good. And I'm getting more help from my fellow patients than I am sometimes talking to the doctors. Now, of course, the doctors and the medicine they prescribed to us and being able to talk to them did help. Everything started to go fine again. We met someone else. We got married again. We raised our children and everything was fine, but about 10 years later, around the year 2010, 2011. And we started feeling like we were getting delusional and having hallucinations again. We still kept to ourselves. And we started self-medicating along with the regular medications that we were on for these schizophrenia. We started drinking again and using other substances to kind of quell all of these extra information, all this extra sensory input we were getting. You had that first psychotic break in college. You then were able to kind of bounce back. You got married. You had kids. And then it all fell apart. And then you were able to find another person and build a whole other life, correct? Yeah, we've been married almost 20 years now. Wow. It's amazing to me that you're able, both times, you bounce back incredible, even though you're still having major issues. Oh, yes. Well, that's the thing is that we've come to kind of embrace the delusions and hallucinations that we have. I really look at it as we came out to get the panic. I mean, first of all, we came out as someone who is queer and non-binary. And that helped in a major way to get to know ourselves better. But then that also led us later on to be able to say, you know, that was comfortable. Maybe we can just at work at the job we have, tell people where schizophrenia is. You know what? If you see me talking to my pen, that's just something that we do. And that actually helped a lot and helped us to find other people who kind of sympathized with us. If you could go back and talk to your younger self after that second psychotic episode, what would you tell yourself? Oh, I would say take it slow. Take it nice and slow one day at a time. Find someone you can talk to about these things because you are not alone. You are not alone. There is a huge community of people out there. And you can just be whoever you want to be with them. You don't have to fit a certain mold. You don't have to run away from these things that are scaring you. You can bring them out into the light and show them love and talk about them or ask them out or whatever you want to do. And it's okay. You're not alone. But I think the important thing is that we do live in a society where we are supposed to produce. We're supposed to get up. We're supposed to do something and produce and we're supposed to be busy. There is only recently I think been more of an awareness, especially in first world countries, to slow down and try to take your time. And I think that is the biggest piece of advice I can give for everyone, especially my younger self is just slow down. When you are having issues with your family the first time, if you could go back, what would you say to your kids who are kind of watching all this unfold? That's interesting because we have talked with them a lot more. We just had lunch with one of our sons the other day. And that is the big thing that I'm stressing to them is that to be their true self, to talk about whatever, to make sure they surround themselves with people they can talk about whatever's on their mind. And they can express themselves in the ways that they feel will make them the most joyful. And the son we were having lunch with, he doesn't seem to be having much trouble with that. And things have always kind of rolled up his back and I'm a little jealous of that actually. But he's also been able to really experience life on his own terms. And that is a big thing that I have tried to set up with both of them is that they're the ones in charge of their destiny. And I think if I could go back and speak with them when they were younger, I would kind of stress that a little bit more and and less the you need to grow up but finish high school, go to college, get a job or get married or whatever they're doing what they want to do. Is there anything in your life that you look back and you regret not being able to do because of the schizophrenia? Oh really the only regrets that we have is just that we didn't start talking about it sooner. And when we found out about schizophrenic anonymous and some of the other groups, I mean like NAMI for example or FPA and how long they've actually been around, we were kind of blown away like how come this is not something we've heard more about? How is it that we were told about these things in the past? If we've been involved with the sooner that may have helped, but really Rachel, we don't have a lot of regrets because of the fact that we do feel our schizophrenia has become a strength for us. I mean we certainly don't want younger people to suffer for as long as maybe we have but everyone's on their own journey and we are just glad that there is so much more awareness and support. I mean this very podcast Rachel, what you do here is amazing when we've listened to some of your past episodes and some of the things that you have people talking about it's great to have a safe space and to get the word out there that there are people willing to be patient and listen and give people the space to express themselves in the way that they are the most comfortable. Thank you very much. When you look to the future, are you worried about what if another psychotic episode happens? What if I wind up in the hospital again? Oh we've thought of that so you know with the 20-year difference between our three visits in 2000 and the one we just had earlier this year, it does make us think about that and now we no longer live in this kind of pretty bubble of you know yeah now that we're on this treatment plan or this medicine or we're doing this therapy that everything's going to be fine for the rest of our lives. We feel that we can probably get ahead of it better next time. We feel that there's many more tools in our tool belt now and from our experience that we would be able to hopefully calm ourselves down and get to a point where we would not necessarily have to be admitted to a hospital but we are also realistic about the fact that that is something that happens with this disease and we are actually taking steps in our life to make sure that if something like that were to happen again we would be much more comfortable with the decision that we were making with what hospital we're going to, what doctor we're seeing, what kind of a support group we might start meeting with or something along those lines, what changes we might need to make in our life, you know it's about getting together a support plan, my advice to anybody who finds themselves either have they been to a hospital or they're afraid they're going through something that might land them in one that first of all there's much much better facilities and support these days than there used to be so don't worry so much about that, get the help you need, get a support team though, get a support plan and put that together because yeah it is something that could happen anytime and you have to be prepared for we kind of look at it like it's not just about taking the medicine it's about doing the therapy and it's about preparing yourself mentally for any changes that might come into your life so that you can handle the stress or the anxiety or whatever comes with it in a healthy way. I know that me listening and I'm sure all of our listeners are thinking the same thing like wow they seem so upbeat and confident you sound like you got this on you know you got it in the bag you're fine but I know a lot of people are listening to you thinking I'm not like that though I'm not as confident as Polly is I don't think I can bounce back the way that they have have you always been like this or is this just come with experience? Well so we have always been somebody who likes to joke around we like to try to take an easy going attitude with things and try to help other people feel comfortable around us but we neglected ourselves for far too long and Rachel having this attitude is a daily practice for us we do not get out of bed and just we're sunshiney but that's the thing this is a daily practice where we get up and some mornings are easy to get up other mornings aren't and then depending on that are we going to do a meditation? Sometimes our meditation is simply to be thankful for the things we were able to do yesterday we call it our monocestery instead of ancestry it's the things that make you just who you are as an individual but things in your life that have happened but we get thanks for people we met things we got to do places we got to go and that could just be the previous day or we might meditate on what it is that we're doing around the house today we might actually say a prayer and we're not religious but we don't necessarily just send our thoughts up into the void either I mean we like to connect with the trees around us we like to enjoy nature we go for walks and so this is a this is a mindful practice and I know that word gets used a lot but I think you do have to be conscious of who you are and where you're at in the moment in order to move forward and be prepared for anything else that life might throw your way and to the people out there who don't feel that maybe they are upbeat like this or enthusiastic or cheerful enough that's okay if you're taking your time with your life you don't have to move at a certain pace now one thing that you've done over the years to maybe cope or to help you is write poetry yes we found that this was a huge outlet for ourselves to get our emotions out to even work out some of our problems, but just to express ourselves in a very safe. And well, when we made our website, it was a way to show other people who we were. - Do you have some poetry that you would share with us today? - No, we would love to. So this is one of the first poems that we ever posted online. And it speaks to us now even after all this time of the journey that we've been on, especially just over the past couple of years. The poem is called "Dream." The room manifests, sterile white, then filled with yellow tile and marble pillars. She is there curled on the floor, naked on her side. Her long thick braid by her waist is if she laid herself down to sleep. We walk forward, my spirit above me, my desire ahead of me, where is my ego? As if summoned, she comes crashing to the ceiling next to me, massive, giant, but then shrinks to the size of my toe. I bend and pick her up and place her on my left shoulder. I look up and the figure on the floor is no more. We know she has a run of the stairs and so we walk, float, and follow. There is a room on our right, floor to ceiling glass, naturally frosted, yellow glow from the cold inside. We're continuing around the room and down a hallway. It's like a maze. We're a multi-flowered, multicolored wreath marks the way. We pass it and turn towards the doors. They will not open. Neither quick nor slow, forced or gently. So we pass through, spirit and desire dissipate, ego is already gone, the fog clears. And the curled figure is there at my feet, as they have always been. I pick her up and hold her close to my chest. I look up a surge of power from us and all maze walls fall, a new open field awaits. - That's very beautiful. - Thank you. - You're obviously the author. So you know exactly what the meaning is behind everything, but when you were talking, I could almost see the she character as being like my schizophrenia. Always there and then at some point in life, I kind of learn to take care of her. - Well, that's a very good point because when we have come to know our schizophrenia and it, first of all, it's symptoms, it's onset symptoms and things like that. When we have come to know the comfort that we can find actually with some of the delusions and hallucinations we have because they're not dangerous and they're more comforting to be with us than what you said could very much be true also because that is getting to know our true self. - How can our listeners learn more about you? - They can go to our Earthstar Heart Root website. We have a business where we do terror reading and meditation and it's called Earthstar Heart Root, all together one word, Earthstarheartroot.com. And our poetry page is PB for Pauli Benjamin, PBpoetry.com. - Pauli, thank you so much for coming on our show today and sharing not only your life but your views and just your outlook on the future. - Well, thank you Rachel again. This is really wonderful to be here with you. - As always Rachel, fantastic job. But everyone with schizophrenia has lost something and we've had so many amazing guests who share their lives with us. Why did you want to interview Pauli for this episode? - Their attitude. Their story reflects so many other people's stories with serious mental disorders. And that's the part that society loves to latch onto, what you've lost, what you could have been, how much your life sucks now that you're dealing with this mental disorder. You know how you should feel sorry for us that look at what we could have been but we're not. And as someone who has schizophrenia, that is not encouraging to me. Honestly, that's not the stuff I wanna hear is how many people die from schizophrenia every year. How many people wind up homeless? Those are important statistics but they definitely are not inspiring to me. What I need to know is that it's going to be okay. And I love people like Pauli who have been through these things who have lost a lot and they're able to come out the other end still smiling, still having a great attitude even though they've lost all that stuff. Like it's hard to say there's a sad story because it's not, it's a triumphant story. And that's the kind of people that I love hearing from. That's the kind of people who inspire me to keep getting up every day. And I think that's what other people with schizophrenia need to is we need to hear from other people like us who they might not be thriving all the time but at this moment they're thriving. And if in that moment they can thrive, maybe I can too. - Balance is so important in this conversation. And I know with the rise of social media influencers, there's a lot of criticism that they're only talking about how great they're doing. They're only talking about how well they're living. They're only talking about how successful their recovery is. That is reasonable criticism. But I would also say that the inverse is true. When people are only talking about what people have lost, when they're only talking about the negatives, when they're only talking about bad outcomes, that is equally wrong. Balance is what we're looking for. And I could not agree more, Rachel. Excellent guest, excellent conversation. And it is good to put hope out in the world and to model that people living with schizophrenia can and do live fulfilling lives. - When schizophrenia enters, it means major life changes for the person and everyone around them. I don't have any great comforting words because yeah, having a serious mental disorder sucks. It sucks for you and it sucks for your loved ones. All I can offer is that yes, there are people in the exact same situation as you and they're doing okay. They are finding ways to adjust to the symptoms of schizophrenia and they're finding ways to change their life's goals and still be able to pursue life. So I want to tell you what I tell myself every day. It's going to be okay. Thank you so much for listening to this episode of Inside Schizophrenia. Please like, share, subscribe, and rate our podcast. And we'll see you next time here on Inside Schizophrenia, a helpline media podcast. - You've been listening to Inside Schizophrenia, a podcast from Psych Central and Helpline Media. Previous episodes can be found at psychcentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at GabeHoward.com. Thank you, and we'll see you next time. (upbeat music) - On any journey using Uber, it helps to know you're getting into the right car. Pin verification adds an extra step to make sure your ride is your ride. Before the trip begins, your app gives you a unique pin. Just tell it to your driver and they'll enter it in their app before the ride can start. - Hey, what's your pin? - 2538. That way you know you're in the right car taking the right trip and your driver knows you're the right passenger. Make sure your ride is your ride with pin verification from Uber. One more way Uber is putting safety at every turn. Learn more on the Uber app.