Inside Schizophrenia Podcast: Grieving the Life You Lost Due to Diagnosis

Guest Bio & Inside Schizophrenia Podcast Hosts

My name is Paul VonEdWærd-Benjamin. It is a great honor for us to have this opportunity to tell you a bit of our story so we can help people like ourself with mental conditions, illnesses, and diseases of the brain — and the mind.

We see our diagnoses as very good things. They helped set us on a path that was much easier to tread and see and feel toward who We are today. We are stronger because of the knowledge of our symptoms and suffering, not in spite of them. We’ve chosen not to ignore negativity nor pretend it doesn’t exist, but to make it something We and We alone perceive to be positive.

An example is when We hallucinate sights, sounds, and intentions (sometimes called “thought insertion”). In the past, these things would scare me. Examples: That person winked at me — why? The song on the radio is intended to convey some special meaning just for me — what is it? I heard a whisper that what I was just thinking about is a good idea — who said that?

Now, instead of fright born of surprise and confusion, We’ve trained ourself to see, listen, and pay attention to these things — and then let them go. Perhaps that person did wink, but they’re 50 feet away from me, we’re in a crowded room, they’re talking to other folks, and there’s a fan blowing on them. Perhaps that song resonates with me in a good way, helping give me perspective I haven’t had before. Perhaps someone did just whisper, but my mind heard what it wanted to — or maybe it was just the wind after all!

Get it out in the sunshine and let’s reveal our shadows together so we can *all* heal. That is the purpose We feel driven toward. And have some fun with it!

Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.

To learn more about Rachel, please visit her website, RachelStarLive.comm.

Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, “Mental Illness is an Asshole and other Observations,” available from Amazon; signed copies are also available directly from the author.

Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can’t imagine life without. To learn more about Gabe, please visit his website, gabehoward.com.

Episode Transcript

Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: 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!

Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline 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.

Gabe Howard: The reality, Rachel, is this is what I like to call the before and after effect. Right? Something happens that creates a clear demarcation between before that thing happened and after that thing happened. Now, many people are familiar with the before and after effect in the positive light. Right 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 we love 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.

Rachel Star Withers: Joining us is Paulie VonEdWærd-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.

Gabe Howard: I have to imagine that this is a much more complex topic than people realize. Rachel, can you help break it down for us?

Rachel Star Withers: 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. I can rebuild everything, because the schizophrenia doesn’t go away. It keeps on.

Gabe Howard: In many ways, this is what makes it so difficult to treat.

Rachel Star Withers: 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? Who’s going to take care of Rachel? What’s going to happen if you know she can’t live in the house? What’s going to happen if she can live in the house? And we have to depend on her to, you know, make payments and whatnot. What if she’s not able to do that? It weighs a lot on those loved ones. My parents, I’m sure that they’re probably like, oh no. What is Rachel’s life going to look like in 20 years? And 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.

Gabe Howard: As our listeners know, Inside 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?

Rachel Star Withers: Unfortunately, there are not many. The life that you lost due to schizophrenia isn’t a huge research topic, which is crazy when you think about how many disorders and things there are in this world and how many websites there are of how to get on, how to live your life. Really, schizophrenia wise, it’s just there isn’t much. One study I found that looked into schizophrenia patients, and the losses they experience 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.

Gabe Howard: 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 and family dynamics is no small thing, Rachel.

Rachel Star Withers: And that potential life that was lost. And it’s even odd to say that, Gabe, 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 a schizophrenia diagnosis.

Gabe Howard: All of this, of course, begs the question, Rachel, do you personally feel a loss?

Rachel Star Withers: What’s different with my situation than 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 definite 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. Um. My independence. I used to be able to work like three part time jobs at once. And that’s not 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, not the adult daughter.

Gabe Howard: Are you saying that you compare yourselves to people who do not live with schizophrenia? Is this a comparison in your mind?

Rachel Star Withers: Absolutely. I compare myself to other people 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, and 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 Jepson, 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. Um, and so 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.

Gabe Howard: 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.

Rachel Star Withers: 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. Whenever 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 her 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.

Gabe Howard: So where do we go from here? What are the next steps?

Rachel Star Withers: 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 inpatient 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 any time, 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.

Gabe Howard: So, is this about accepting your diagnosis? Is this just about understanding that you’re now sick or is it bigger than that?

Rachel Star Withers: 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, Rachel, 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 in denial. So, they’re not getting help. They’re refusing help. But to loved 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 as simple as going to work for ten hours. I have to be like, wait, right now I feel like I can do that. But then honestly, I know that in two hours I’m going to be in rough shape. It’s 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, you know, another psychotic episode, or if their cognitive functioning goes down.

Gabe Howard: 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. There was, you know, 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 breaks. 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 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.

Rachel Star Withers: What I love about that example you just gave was that it was very clear you’re in this together. You’re stepping in and like saying, hey, dad, let’s take a break here. Let’s stop here. You know, you’re not making him feel like he’s a burden. You’re part of the situation. You’ve ingrained yourself in that. Hey, this is something. This diagnosis, this situation is something we’re dealing with together. And 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 that takes so much of a burden off that other person. No one wants to be the sick one. So, 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, right? Loved ones, caretakers put yourself in their shoes. How do you think they feel? Because sometimes they’ll, they’re like me, and they’re not going to want to tell you that they’re struggling with those issues.

Gabe Howard: And 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. Now, 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.

Rachel Star Withers: Yes.

Gabe Howard: 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. So, 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.

Rachel Star Withers: And 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. And which I can understand because you’re thinking, well, you still have your child. Like, I get that completely. You know, 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. But it does weigh on people, and it can be hard when you look and think, you know, you had all these great dreams for your child, and that’s not going to be happening now. You know, it could even be as simple as I thought they would take care of me in my old age. Now I’m in 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, and 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.

Rachel Star Withers: 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 that that I was like, oh, wow, that’s that explains so much to me because so many times in the past, I would just think those are 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. And all I can 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.

Gabe Howard: 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 and 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.

Rachel Star Withers: And there is no right way to grieve. There is no like step by step. This is. This is what you need. This is how long it takes. You know 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 bachelor’s, there was an opportunity on the table that I almost didn’t tell anyone about to get my master’s. But the truth was, at that time, I had to accept that I barely made it out with my bachelor’s.

Rachel Star Withers: I can’t 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 deal with this? What’s the first part? 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 master’s 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 master’s. 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 fiancé to all of this. You can be upset about that. Yeah, it’s not fair. And you need to let yourself feel that because ignoring it, we all know doesn’t make it go away. So that’s the first step. Acknowledging what you lost and saying, hey, how do I feel about this? Let me actually confront this.

Gabe Howard: 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 antisocial, 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?

Rachel Star Withers: Just like schizophrenia is a spectrum, schizophrenia encompasses all those things. And unfortunately, and it’s probably not good that I use it as a joke. A lot of kind of like 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.

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Gabe Howard: And we’re back discussing the grief people feel when diagnosed with schizophrenia.

Rachel Star Withers: For me personally, accepting that I can go from, from speaking fairly clearly and coherent to, you know, 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, you know, guests that we’ve had on the show, and I’m just like, wow, they’re doing so many cool things.

Rachel Star Withers: 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, and 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. Now t 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. That’s amazing. And I can say from my own life, looking back where I am now is, yeah, this is the best I’ve ever felt with my schizophrenia. Um, and let’s say I’m going to feel even better in 20 years. To me, that’s very helpful. And I, 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.

Gabe Howard: 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.

Rachel Star Withers: Yes. Joining us is Paulie VonEdWærd-Benjamin. One note is that Paulie uses they/their/we pronouns.

Gabe Howard: All right, let’s go ahead and play that right now.

Rachel Star Withers: I’m excited today to be speaking with Paulie VonEdWærd-Benjamin. Now talk to us a little bit, Paulie. When did serious mental illness enter your life?

Paulie VonEdWærd-Benjamin: Yeah. 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, is 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.

Paulie VonEdWærd-Benjamin: 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 like raising children and we started to go through a divorce 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.

Rachel Star Withers: What I find so interesting about your story is that you have that first psychotic episode in college. First time you’re in college

Paulie VonEdWærd-Benjamin: Yep.

Rachel Star Withers: 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.

Paulie VonEdWærd-Benjamin: [Laughter]

Rachel Star Withers: That’s the assumption.

Paulie VonEdWærd-Benjamin: Yeah.

Rachel Star Withers: He’s cured. He is completely recovered.

Paulie VonEdWærd-Benjamin: Right. Write it off.

Rachel Star Withers: Yeah. Like that was a one-time thing.

Paulie VonEdWærd-Benjamin: No problem. Smooth sailing for the rest of your life.

Rachel Star Withers: Yeah.

Paulie VonEdWærd-Benjamin: Right.

Rachel Star Withers: Right. And then it all falls apart a second time.

Paulie VonEdWærd-Benjamin: Mm-hmm. 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 prescribe 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 ten 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 the schizophrenia, we started drinking again and using other substances to kind of quell all of these, all this extra information, all this extra sensory input we were getting.

Rachel Star Withers: 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 nother life. Correct?

Paulie VonEdWærd-Benjamin: Yeah, we’ve been married almost 20 years now.

Rachel Star Withers: Wow. It’s amazing to me that you’re able both times you bounce back. Incredible. Even though you’re still having major issues.

Paulie VonEdWærd-Benjamin: 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 as schizophrenic. I mean, first of all, we came out as someone who was queer and non-binary, and that helped in a major way to get to know our self better. But then that also led us later on to be able to say, you know, well, that was comfortable. Maybe we can just at work, at the job we had tell people we’re schizophrenic. And 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.

Rachel Star Withers: If you could go back and talk to your younger self after that second psychotic episode, what would you tell yourself?

Paulie VonEdWærd-Benjamin: 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 act 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 a the biggest piece of advice I can give for everyone, especially my younger self, is just slow down.

Rachel Star Withers: When you are having the issues with your family the first time. If you could go back, what would you say to your kids who were kind of watching all this unfold?

Paulie VonEdWærd-Benjamin: That’s interesting because we have talked with them a lot more. We just had 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. 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 off 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 less the you need to grow up and finish high school, go to college, get a job or get married or whatever. They’re doing what they want to do.

Rachel Star Withers: Is there anything in your life that you look back and you regret not being able to do because of the schizophrenia?

Paulie VonEdWærd-Benjamin: Oh. 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 Schizophrenics Anonymous and some of the other groups like NAMI, for example, or SPAA, and how long they’ve actually been around, we were kind of blown away. Like, how come? How come this is not something we’ve heard more about? How is it that we weren’t told about these things in the past? If we’d been involved with those 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.

Rachel Star Withers: Well, 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?

Paulie VonEdWærd-Benjamin: Oh, 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

Rachel Star Withers: Mm-hmm.

Paulie VonEdWærd-Benjamin: 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 they’ve 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 any time and you have to be prepared for it. 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.

Rachel Star Withers: 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. You know, you got it in the bag. You’re fine. Um, but I know a lot of people are listening,

Paulie VonEdWærd-Benjamin: [Laughter] I wish

Rachel Star Withers: And they’re thinking, I’m not like that, though. I’m not as confident as Paulie 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?

Paulie VonEdWærd-Benjamin: Well, well,

Paulie VonEdWærd-Benjamin: So we have always been somebody who likes to joke around. We like to try to take an easygoing 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 sunshiny.

Rachel Star Withers: [Laughter]

Paulie VonEdWærd-Benjamin: 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.

Rachel Star Withers: Mm-hmm.

Paulie VonEdWærd-Benjamin: We call it our mono-cestery instead of ancestry. It’s the things that make you just who you are as

Rachel Star Withers: Huh?

Paulie VonEdWærd-Benjamin: An individual, the things in your life that have happened.

Rachel Star Withers: Hmm.

Paulie VonEdWærd-Benjamin: So, we give 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,

Rachel Star Withers: Now, one thing that you’ve done over the years to maybe cope or to help you is write poetry.

Paulie VonEdWærd-Benjamin: Yeah, we found that this was a huge outlet for our self 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.

Rachel Star Withers: Do you have some poetry that you would share with us today?

Paulie VonEdWærd-Benjamin: Oh, 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.

Rachel Star Withers: Okay.

Paulie VonEdWærd-Benjamin: 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 as 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 through 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 run up 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 where 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.

Rachel Star Withers: It’s. It’s very beautiful.

Paulie VonEdWærd-Benjamin: Thank you.

Rachel Star Withers: 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 learned to take care of her.

Paulie VonEdWærd-Benjamin: Well, that’s a very good point, because when we have come to know our schizophrenia and if, first of all, its symptoms, its 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 then what you said could very much be true also, because that is getting to know our true self.

Rachel Star Withers: How can our listeners learn more about you?

Paulie VonEdWærd-Benjamin: They can go to our Earth Star, Heart Root website. We have a business where we do tarot reading and meditation and it’s called Earth Star, Heart Root. All together, one word, EarthStarHeartRoot.com. And our poetry page is PB for Paulie Benjamin, PBPoetry.com.

Rachel Star Withers: Paulie, 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.

Paulie VonEdWærd-Benjamin: Well, thank you, Rachel again. This is really wonderful to be here with you.

Gabe Howard: As always Rachel fantastic job. But, you know, 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 Paulie for this episode?

Rachel Star Withers: 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 on to. 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 you know, 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 want to 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 Paulie 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 theirs is 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 do, 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.

Gabe Howard: 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.

Rachel Star Withers: 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 Healthline Media podcast.

Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline 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.