This week on No Restraints with Rudy Caseres my guest is Krista MacKinnon. Krista has specialized in mental health recovery education, curriculum development, group facilitation and community organizing since 2003. She created Families Healing Together, one of the first ever online family mental health recovery education programs, which has been utilized by over 1000 families across five continents, and has been contracted with agencies in Canada, Australia and the US. Krista also works in Community Outreach and Family Support for Muir Wood Adolescent and Family Services. You can learn more about Krista's work at familieshealingtogether.com and muirwoodteen.com.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
Rudy: Hey everyone, welcome to a brand new episode of No Restraints. This is a little weird because today, Wednesday, July 3rd, the great Facebook Outage of - I think it's the second one, but whatever of 2019 and so instead of just rescheduling or calling and off altogether, here I am, what? Krista McKinnon, we're not going to do it live, but we're going to post this when Facebook is letting us again when it's got his shit together and we're going to have a quality conversation. You and I, Krista, and this is still No Restraints. This is still episode 49. It's a little different. So thank you for working with me, Krista. Without further ado, who is Krista McKinnon?
Krista: I am a person who's recovered from a childhood diagnosis of bipolar disorder. I am a person that believes very deeply in connection, um, and finding ways for strange relationships to be strengthened. I've done, I've worked for a few different organizations. I've done speaking and presenting across Australia, United States and Canada. And yeah, basically I'm a person who spends a lot of my time caring about and thinking about families in mental health and addiction recovery.
Rudy: Now a word that you used and I hear a lot throughout your work, especially with families healing together is "recovery." Which can mean a lot of different things to a lot of different people and a lot of different communities. Very controversial. Some people hate it, some people will love it and everything in between. So your definition, Krista Mackinnon, what is recovery?
Krista: Well, it's so fascinating because I've worked in mental health specifically for most of my adult life and only in the past year have I started to work in addictions. And of course addictions and mental health are absolutely interrelated. Everyone knows this, but they do tend to operate in silos. I mean there are mental health services and their recovery services and, and peer supports in mental health services and in recovery services, uh, for addiction are quite different. I mean, addiction has a whole AA community, which is, you know, has a deep history and it's all over and is flourishing. And, um, you know, in mental health, mental health recovery is relatively new. Even the concept of it is relatively new, especially compared to what's happening, organizing around AA and things like that. So you asked my personal definition of recovery. So I identify as a person who's in recovery in that I spend my, a lot of my life, a lot of my energy in my heart in learning to be free. So I was born free and then life happened. Trauma happened. Just sexual abuse, a history of diagnosis, recovering from that diagnosis, marriage, divorce, you know, immigration to countries, poverty, not poverty anymore. Poverty again, I mean, just life. And so how I personally identify with the word recovery is I'm a person in recovery trying to recover my freedom, which is my birthright to be a free being. When I talk about recovery in the work I do with families. I'm talking about their family recovery. So in spite of whatever whatever chaotic scenarios are happening in the family due to a mental illness due to mental health issues there that their family can recover a semblance of connectivity, love, freedom, joy as a family. So I needed it. Like some countries will define, you know, the definition of mental health recovery as being like living well in the presence or absence of illness and like, you know, there are definitions like that. So there are a million different ways you can define mental health recovery. But yeah, that's my personal definition. And when I talk about family mental health recovery, what I'm actually talking about is taking everything that we've learned about mental health recovery and mental health recovery and systems planning, taking all of that wisdom and leveraging it to educating families on how they can implement recovery in their family life.
Rudy: Now I've heard people in the Mad Pride, psychiatric survivor movement saying they don't like the word recovery because what are they recovering from? They're fine. It's the people that are putting these diagnoses on them and saying that you need to recover what say you to that.
Krista: Yeah, well, I mean, everybody has to recover from trauma all the time, even if it's just the trauma of, you know, even if it's a micro trauma. I mean, we all have traumas that happened in our lives all the time that we need to recover from. But recovery, you know, as a term is, is an unwieldy because there's recovery as a systems approach to managing the mental health system. Then there's individualized recovery. Then there's recovery as a practice like psychosocial rehabilitation recovery. So, I mean, it's like, it's very unwieldy. You know, if somebody's a psychiatric survivor, as you said, would say, "I hate the word recovery. I don't have to recover from anything. It's all these people telling me that I'm sick when I'm not sick, or something to that effect." Like, you still have to recover from the fact that you live in a culture that is, I'm treating you in such a way that doesn't align with your version of reality. Right? I mean, that's, that's intense. How do you live in, you know, in a world where everybody's saying one thing about you that you don't believe to be true, that you need to recover from that experience. So there's, you know, there are many different ways of taking that word and applying it.
Rudy: Now let's take the diagnosis that you had - bipolar disorder. Talk about how you got that, how you viewed it thin and how you view it now.
Krista: So I was 16 when I received my diagnosis, I was forced into treatment and I had an inpatient stay for five weeks. I was kind of just hanging with the wrong crowd, I guess you could say. I mean, I was doing drugs. I was doing acid and smoking cannabis most specifically before I had my, what they called Manic episode that got me hospitalized. So what happened at the time was I was forced, treated for something they called bipolar disorder. I was told to be on, you know, that I had a lifelong brain disease that I would need to be on medication for the rest of my life. My parents were taught to believe that about me as well. And they were also taught to be sort of the gatekeepers up too much. Not The gatekeepers, but like guards in a way. They were letting, you know, they were trained by the hospital to, you know, make sure she takes her medication. It's absolutely dangerous. If she goes off it, she'll have another psychotic episode. She needs to be on this because she has this brain disease called bipolar sore. I never fully bought into that belief. So, you know, when you're 16, those are like formative years. You're figuring out who you are. I'm almost 40 and I'm still figuring out who I am and in terms of how I relate to the diagnosis now versus how I related to it, then I still don't buy it. I still don't swallow it. Hook, line and sinker. I think that people are diagnosed with what the medical community considers a lifelong brain disease and mental illness at young ages way too often. And that that's dangerous because when you're diagnosed with something like that, even someone like me who's like, [inaudible], I'm not taking that. I don't believe that. It doesn't go away. It's like you, you've had this diagnosis and whether or not you believe it and whether or not you live well for the rest of your life, whether or not you're on medication or not, you have that. It's just part of you. You always are wondering like, is this thing, you know? So I don't know. I mean, how do I relate to it now? I don't access psychiatric supports for my emotional states. I have spent a lot of my life studying wellness practices and enhancing my own personal medicine strategies. And I live really well and I love life. And I'm grateful for my life. So I don't feel like I exist in the world as an ill person.
Rudy: Let's talk about mania. Is that something that you experienced in those younger years or is it something you still deal with now?
Krista: I haven't dealt with it lately. I dealt with it in my young years. That's why I had a manic episode, what they called a manic episode. So, which is what had me hospitalized. And I didn't officially, I was never hospitalized again, so I was able to sort of anytime I had experiences that could have been identified as mania I managed them in such a way that I didn't end up in the hospital again or - but yeah. I think I've had times in my life where I was tapped into a different kind of frequency that is not ordinary.
Rudy: So if you are not, if you were going to use a word other than mania to describe your experience, what would you use?
Krista: I mean I don't even mind personally. I don't mind the term "mania". It happens to be a medical term. But I don't mind it because I think it can accurately describe, I mean for me it's more of like sped up. Like I prefer the term "I'm sped up right now." Or "high."
Rudy: So if you were to get really, really sped up or high right now, how would you manage that?
Krista: Well, this is where I have personal practices. Like this is why I identify as being partially still as being in recovery because I have practices that I have to kick up, you know, if I noticed myself, I'm straying from center, then I have to kick up on my practices and my prac - my personal practices are breath work and yoga. And it's a particular kind of breath work that I do that's called rebirthing breath work, founded in 2012 and has been, I'm so grateful to it because it's really helped me to live from my inner compass in a way that I didn't even know I had an inner compass, I think at times. So, yeah, so I have personal practices and that like, you know, Patricia Deegan, Dr Patricia Deegan calls them personal medicine, right? So my personal medicine is work. And so if I'm feeling, if I know, if I know my thoughts are going in it to a place that are, I'm not going to help me in my life, then I kick up my practices.
Rudy: So do you see mania as something to avoid or something necessarily bad?
Krista: No. Nope. It depends how that, how the mania manifests. This is like - the Icarus Project has, they say, you know, navigating the space between brilliance and madness. So, and I really identify with that and I've got a lot of support through the way that they've explored understanding madness because my, my mania, uh, you know, is what it has helped me to birth projects has helped me, you know, not to Romanticize it, but you know, my positive like manifestations of mania I have been, I get great ideas, I write more, it gives me courage to make really bold decisions that from an outside perspective often look like I'm not thinking straight, but they, but some of those bold decisions that really worked out for me. And I think that there's a certain degree of crazy that I'm blessed with that sort of allows me to do things that not everybody would do or that allows me to not feel my comfort zone in such a painful way. So I'm able to step out of it. And those are like the gifts in terms of navigating the gifts of, you know, brilliance and madness. Like there's some gifts to it. And another thing is once you've been diagnosed as somebody who is mentally ill or has a mental illness, um, which is not language I personally use, but that's what the culture gave me that language to identify myself. Um, and once, once you've been given that there's, there's a way in which I stopped caring what people thought about me, it's like, okay, well people think I'm crazy anyway. So it's kind of helped me to shed a skin around, just worry about what other people think in a way.
Rudy: Yeah, you used that word romanticizing. And I think that's something we personally get scared of when talking about the positives of mania, bipolar, because I've even been told that I'm manic for saying that or I'm delusional or just my illness talking. And it's a tricky thing because you don't want me people to get the impression that, oh, like being suicidal is awesome or being so manic you can't sleep for days or you spend all your money in one day is good. It's not. But that, does that necessarily make bipolar mania and depression bad in of themselves?
Krista: Well, I think my personal perspective as a person who has been given that label - this is my life that I get live in. I get to make whatever choices stupid or brilliant that I want to make with that one life that I get to live. And there have been times where, what other people, I kind of said this already, but where other people may have looked at my life and thought, she's definitely manic right now. And a lot of those choices I made in that time are choices that have shaped me, that have grown me, that may not have looked like smart choices. So, you know, it's terrible when someone is so manic that they're making choices in their life that are deeply harmful to their being. And that's where it gets complicated around forced treatment and things like that because everybody's on the outside watching is like, this is wrong. You know, they don't even know what they're doing. Right. And everybody is scared and, and it gets, it gets complicated. This is, this is why it's such a touchy, forced, forced treatment is such a touchy issue because does that person have the right to make their own personal choices for their own one life that they get to live from their heart or are they mentally ill and, and they don't know what they're doing. So we better save them because they're going to die or they're going to hurt someone or, right. It's, it's not. So that sometimes the psychiatric survivor movement, um, is, I find it frustrating sometimes because a lot of people in the movement have been really hurt by treatment in a way that I was, I mean, I was hurt by forced treatment, but not some people that have been hurt very deeply and for many years. And, um, and I think that lived experience in a way makes them sort of issue the entire psychiatric model of care as it's bad for everyone. Um, and I don't, and I, I think I used to be like, felt that way a little bit at first when I first started working in the field. But, um, but yeah, I just see things as so much more complicated and nuanced now than I ever did before. You know, when I first started working as an advocate in the mad pride movement, um, I didn't really, I knew a lot less. I knew my personal experience pissed me off, you know, and that's why I started working in the mad pride movement. That's why I started studying recovery. That's why I wanted to educate families about recovery. Um, and now, you know, almost 20 years later, um, I've seen a lot, I've learned a lot and I'm a little more centrist around this stuff. Like I've seen medication help people massively. I've seen families that are utterly torn apart and when the kid gets some meds, they can actually talk again. So it's, I don't, I don't know. I think I departed from your original question, but -
Rudy: No, no, that's fine because you opened up a new well. So you talked about forced treatment and I, I've been a victim of forced treatment as well. It's kind of why the show was called No Restraints. I've been put in restraints several times. And something that I always really want to stand for is advocating against forest treatment because I don't think it works. I think it does more harm than good. Yeah. But I talked to a lot of people, pretty much everyone that I talked to you except for maybe one or two that I've interviewed over the past few years, is that there are certain allowances for treatment. What say you to that?
Krista: I believe also there are certain allowances and I'm not some, you know, expert on exactly how we should implement that. So like, you know, I don't claim to know exactly under what circumstances specifically written in, codified in law that we should, I mean, it's so hard to (inaudible), you can't play God right? This is what's so like how do we create a system that for the most part, almost never forces people into treatment because I agree with you. I don't think forcing people into treatment works. Um, but then there are some instances, I mean, I know some people who've been really grateful that they've been forced into treatment. I know some people that think that they're grateful only because they'd been indoctrinated by the psychiatric community. I mean, it's just, you know, I feel like the older I get, the less I know, really as unsatisfying as that is. That's kind of what I'm left with.
Rudy: No, and that's fine. And I mean, me personally, my views on pretty much everything have gone up and down throughout my entire life. And it's very, very hard to say key issues where if that's the hill that you're going to die on, right? Because most likely 10 20 years from now you're thinking like totally different anyway. But I think always I want to stand for human rights and making sure that people have decisions no matter how sick people say they are and that they're totally incapable. People should always have options. Even if it's just simple things like you, what do you, what do you want to eat? What do you want to drink? Do you want to sit up? Do you want to sit down and write? That goes a long way.
Krista: Well, and from a system perspective, again bringing up Patricia Deegan, like I love her work around personal advanced directives. Like that's one way that the mental health system can try at least to make sure that people's choices are being respected to such a degree that ultimately maybe they'll never need to have forced treatment because they've got personal advanced directives in place. So, you know, somebody's personal advanced directive might look like, you know, it's similar to like a wellness and recovery action plan. It might look like these behaviors from me, if I start doing x, Y, Z. If I say start saying these words here's what I want you to do. And most people aren't gonna say, send me to hospital. They're going to say, you know, specific things that resonate for them. Like for some people it would be like, you know, take me to a music concert of my favorite musician to, you know, like people, this is a thing that I think the mental health system does really wrong is we do not incorporate art, poetry and meaning making into treatment enough. And for me, for sure, those are the things like spirituality, art, poetry and meaning making, those are the things that heal me, you know? And I know I'm not alone in that. So, yeah. But there are things we can implement in the system. Like, you know, more peer respite programs. Like alternatives to hospitals so that people don't have to, if they're in crisis, they can get support without, you know, people go to the hospital sometimes just cause they're so desperate. Right. But if there are peer support, res - peer respite houses that offer peer support, that might reduce the need for the, you know, for these cases that evolve into, or it feels like the only option is forced treatment. So I really just think there are a lot of preventative things that as a system we need to be implementing.
Rudy: I agree. And you know there's a lot of people in the Treatment Advocacy Center camp who say all these things like art, poetry, pet therapy, this is not going to help the "seriously mentally ill". We need new meds, new treatments. We need Advanced Outpatient Treatment, involuntary care, more beds. That's what's really going to help the "most seriously mentally ill," which is the people that we should be as a society, the government, should be funding should be taken care of. And everyone else, the quote unquote worried well should just get nothing basically or very little or be last in line. What, say you to that?
Krista: I don't even know what to say to that. I think the hopeless, the pervasive hopelessness that workers sometimes feel is contagious. And I get it that some people are really, really disabled by their emotional distress to such a degree that functioning were functioning in the world becomes challenging. And I'm not suggesting that, you know, we just create poetry classes for the, for the mentally ill and they'll get better. It's not, it's not like that. I mean people need different levels of care and different levels of care, you know, need to be like, I believe that somebody that like let's say somebody who people think needs forced treatment. The sickest of the sick, the most unwell of the most unwell. That person may need a ton of support, a ton of support, and for a long period of time and the way in which they get that support for a long period of time, I don't think that putting them in a care facility where they're just given meds and it's a hospital like environment and they're not exposed to art, poetry, community, social inclusion and things like that are going to help either. Like, you know, you can't put a seed in soil like that and expect it to bloom. So I don't really know. I don't know. I mean, I'd like to see long longterm programming and residential care for people that need a high level of care for longer periods that also incorporates their humanity in a greater way rather than just reducing their symptoms to a biological brain disease and viewing them sort of divorced from their spirit and humanity and connection to the community outside of the hospital world and outside of their role as a mental patient.
Rudy: Now about that word "brain disease," like do you, what do you think of that? You seem to say it with derision, is there nothing going on in the brain? Is it not a disease?
Krista: Well, there are, I mean there are things going on in the brain. There's always chemistry in our bodies and in our brains happening. I mean we get excited, our heart beats like there's - you know - there's, there are physiological responses happening to emotions all the time. So of course there's brain activity, but I've yet to see, you know, biochemical markers for mental illness. You know, when people die who have diagnoses of mental illnesses it doesn't show up on brains. It doesn't show up on brain scans in the same way. Or for those who would argue, "well, look at this study." You look at this brain. Those are brains that have also been taking psychiatric drugs for a long time often. So it's hard to tell. It's just not - I don't believe it's a brain disease in the way in an isolated way. I believe the brain is of course, you know, the brain is affected by physiology and by our emotions. And by our thinking. And and all of that. But I don't believe it's a stagnant thing that, you know, that brain is diseased and it's gonna stay diseased for the rest of its life as a human, as this human. No, I don't believe that.
Rudy: Well, the National Institute of Mental Health, they need to spend another $10 billion, then they'll find those biomarkers. So we'll get there.
Krista: Yeah. Yeah. I know they keep investing money searching for those biomarkers. So...
Rudy: Yeah, let's get to Families Healing Together because I was first exposed to NAMI's Family to Family, which sounds a lot different from what you got going on there. Is this a response to that? Like how did you feel compelled, like this was something that was very necessary for you to create?
Krista: Yes. So I encourage families to take NAMI's Family to Family as well. So here's the thing, it's like I created Families Healing Together because I was in a position at a drop-in center where my role was to create family supports and to create a curriculum to support families that had people that were struggling with mental health issues, often people who are diagnosed with mental illnesses. And I was googling and trying to find information and all I could find was sort of the medical perspective on what is mental illness. So the commonly agreed upon ideas of illness and disease. And I didn't that that information is so readily accessible. It's all over. It's everywhere. NAMI gives it out, hospitals give it out. It's just everywhere. It's easily, readily accessible. And I think it's important for families to read that, to learn it, to decide what they believe, to be really educated about the choices that they make in their family, about how they want to treat, um, mental health issues. Uh, but what I wanted to do was I wanted to compile in one place different information. And this is when the mental health recovery movement was really starting to blossom. So there were all these new, you know, there were people, psychologists, and lawyers and activists and people tree generating all of this knowledge and sort of like a knowledge community around recovery in this concept that people can get well and stay well and live well. This was blossoming. And so I wanted to harness that and put it all in one place so that it would be easy for families to, to get that perspective too, because it's not the perspective that they get when they just Google, you know, it's not the perspective the hospital gives them. Um, and so, so I, you know, I didn't want to reinvent the wheel and I searched everywhere and couldn't find any kind of curriculum, like what I was hoping to create until I found this tiny little mighty mouse program in Toronto that was doing this work. And, uh, so I joined forces with them and we wrote curriculum and developed at, at family outreach in response program in Toronto. We developed this mental family mental health curriculum. So we developed a 10 week course and an eight week course and we were doing these groups in person with families. (phone alert goes off) I don't know how to shut that damn thing off. I tried twice. I don't know how to stop it.
Rudy: You gotta put it on channel three.
Krista: What, channel three? (laughs) I don't know. But anyways, yeah, so I was running those groups in person and I was really grateful to the family outreach and response program cause they had developed this amazing curriculum that I got to train with them and learn from. And then I started writing curriculum as well. And then eventually I ended up taking all of that.
Krista: People were very interested worldwide in this curriculum because there was nothing else like it. Um, and so I was able to put it online so that it could be more accessible to more people. And it's been online for the past seven years and it's now in the format that it's in online. It's an eight week, it's an eight week, um, online program where people can run the, you know, take it as a group and they communicate with each other in the comments section about the curriculum. Yeah. And they can just sort of explore different ways of understanding what's happening. You know?
Rudy: Yeah. I think the first time I think that you reached out to me was wanting to take this course and get my thoughts on that. Why specifically me? Why was I the Chosen One?
Krista: I forget how I initially found you, but I remember seeing that you were involved in some organizing around anti-forced treatment, but that you were also working with the National Alliance with Mentally Ill. So I was like, this guy's perfect for, I'd like love to know his opinion on this class because that just seemed like the perfect combination for me cause I saw it and I was like, okay, obviously he's a critic, a critical thinker or he wouldn't be involved in both. Like you're like a knowledge seeker, you know? Um, yeah. And so I was like, I'm just curious. Yeah, but you never gave me your thoughts.
Rudy: Yeah. Well, let me, let me, let me tell you this.
Krista: (laughs) I would like to interview you. What are your thoughts on the class?
Rudy: No, the thing is is that it's a lot. I'm just going to say that there's a lot to follow up. I'm, I'm bad with homework. I'm bad with assignments. I've tried taking online classes before. I always fail, so just because I wasn't able to get through all the classes and all the assignments and everything. Something that I have noticed that I like is that first off, I do not like NAMI's Family to Family. I've sat in on meetings, I've spoken to groups. A lot of times these people, these parents, and you might've gotten these questions or comments from parents that you've worked with is "how do I get my son or daughter sectioned? How do I get them 5150'd, Baker Act, all this stuff. Like how do I get them to take their meds? I'm so sick of them. I'm going to throw them out. Like, I'm just so frustrated." And it always comes from that perspective. And that's not necessarily, I mean for what I've seen, I'm sure all groups are different. All moderators are different. It doesn't come from a place of healing. It just comes from a place of just frustration and just wanting, wanting to be told that they're right, that they're not part of the problem.
Krista: Sure, sure. I mean the reason that I like the Families Healing Together curriculum and the reason why I liked running the groups in person in Toronto was because my experience when I would go, I would go to network, you know, with these other family programs that were running support groups in my experience was that the groups were very depressing. They were depressing. They were laden with frustration and angst and the moderators would often just hold space which is an important thing to do. But I think, I think if you want to create an environment in your family where recovery is likely to flourish, you have to be in contact with your own sense of hope. And I don't think that a lot of those groups foster that sense of hope. And so what I find for myself when I'm running family support groups even still, and I'm just starting to run one in person again, that I'm so excited about on Thursdays in the South Bay, in the San Francisco area, is I want families to understand completely that people get well. (inaudible) Like no matter what any doctor says about that your person that you love, they can absolutely get better. They can live a life of meaning, purpose and value, and that you can be connected to them and set boundaries at the same time. So like, let's say you are frustrated and you need to, you want to have them sectioned as you said or whatever. I'm like, okay, well what, what you really want is you want to set boundaries. You want to, you want to know, you want to establish what is okay for you and what is not okay for you and your personal relationship with them. You know, what they do with their life. This is their decision. Um, so let's talk about that. Like what are the boundaries that you need to set and how can you be okay in your relationship with them and stay connected to them and continue to offer unconditional love and presence for them, but maintain your boundaries and you know, that's a whole, that's a whole different way of understanding the relationship. Then I need to get them in the hospital. You know, they're, they're making me crazy in my house. They're not doing the dishes. They're writing on the walls. You know, the, just because you don't, sometimes the answer is that some space needs to be created between in, within the relationship and it's not, that doesn't mean that person has to be forced into treatment. You know, some, some family changes to the entrenched patterns might be enough to, to change that person's behaviors that are appearing to make them seem completely crazy.
Rudy: Yeah. That was one of the main things I liked about your training is that it's not about here's these list of diagnoses, here's these symptoms and here's how to basically coerce your son or daughter your loved one. Here's how to lead them down a path. Here's how to navigate the legal system to get what you want. Here's how to bypass certain HIPAA protections. All these, these stuff that I, that I, he me only disagree with. Whereas you are more about options, choices and see, the thing is Krista, is that I'm estranged from my family. I don't talk to them anymore at all. And it was one of the best personal decisions I've ever made for myself. It was for my own good. So it's hard for me to sometimes get into back into that field of mine is that families are great for most people. They are, are oftentimes the strongest thing that someone has in their life as far as compassion for support, for making sure that the person feels safe. And just because I don't have that in my life doesn't mean that it's necessarily bad. I don't know if you get emails or whatever from people saying like, "oh, the families need to stay out of that. Like I hate families. Like why do you want to control everything? Why do you always want to control the conversation?" So I just like that you are so much more beyond that.
Krista: Sure. Well, and you know, I've worked with families that haven't been in touch with their relative in many years because of the forced treatment created such a rupture in the family that now the relative no longer speaks to their, their family member. And that's really interesting. That's really interesting work to do with, with people. And, and it's also really interesting work. When people come and they're like, they're so controlling of their family member and it comes from a place of love and fear and all of that, but they're there. So they're family members. Distress has completely become their life. And it's really interesting untangling that with people and helping them to realize that their relationship can actually be really beautiful and strong when they back away a little. And when they allow for more personal choice and freedom and when they create systems and structures in the family home that give more autonomy to the, the person who's got the label or who's got the, you know, the identified patient in the family. And that's really beautiful work in it. And my concern about, you know, nanny is interesting cause some chapters are really great, some are like, you know, they're an organization and every chapter is different and all of that. But some of the groups that I've been to, I feel like foster a continuing of learned helplessness, you know. Yeah. And so a lot of the work that I've done with Families Healing Together is to try and help all the members in the family to find their personal sense of freedom. Um, and that includes the person in recovery. And that includes, you know, the mom, the dad, the brother, the sister that feel, that feel, you know, it's like all of the voices are important and need to be heard and need to be out in the open and valued and structures and systems can be put in place in a family where everybody's autonomy is respected, even in extreme mental health distress. Uh, but they need support to do that. I mean this medications are so fascinating and families because the hospital tells the family it's their job to keep the relative on the medications. Oftentimes, you know, they're discharged, they go back home and the hospital is like, you got to make sure that your relative stays on their meds. That's a recipe for creating a family dynamic that's not healthy.
Rudy: Yeah. And all that you said. The good things that - the last part - is really why I think Families Healing Together is very necessary. And if one person watching this and signs up for one of your programs, like mission accomplished because I really think more and more people should know about it because it is much needed in our society.
Krista: Yeah. Thank you. I've been doing Families Healing Together full-time for seven years and it last October I started working at jobs and I got a full time job and so I'm Canadian. I lived in Canada, I moved to Costa Rica, lived there for about four years and then I moved to California. I've lived here since 2015 and in October I got a job, my first job in the United States at a national behavioral Healthcare Corporation, publicly traded a big corporation, uh, that does addiction rehab facilities. And it was like such a culture shock to me. And I began to see firsthand just how the American insurance industry works and how the addictions addiction field works with all the, it's so competitive for to get people into the treatment facilities and it's like, it's just drenched in capitalism in this way that's so jarring to me. And so I had to leave that kind of environment. Working in that kind of environment wasn't, wasn't for me. And I found a small facility. It's a 22 bed facility that's local to where I live that I've just like, I've just fallen. So in love with this facility, it's, it's small. It's 22 beds. We serve boys age 12 to 17 with substance use and mental health issues. So there's both, you know, people with substance use and no diagnoses of mental health issues. There's people that have diagnoses and they don't have substance use. There's both but sort of like a wide cross section of kids, boys age 12 to 17. And I love our psychiatrist. I think he has really good work with the boys and it's just nice to, it's nice to have found. I've been working for so long with families around kinda like framing their experience and talking about their feelings and learning to set boundaries and now I'm doing this, this sorta like this other kind of work where I still get to do that in the community because the organization that I worked for, Muir Wood allows me to be a support to the community in that way. And then I also get to, you know, try and bring kids that need that kind of treatment to a place where they'll get good treatment. Cause you know, that was me. I mean, I wasn't a boy, but I was a 16 year old kid that was having some, some emotional distress. I didn't think it was distressed at the time, but, and it was largely related to drug use, I think. Or maybe not. I don't know. I had sexual trauma, I was little. Maybe it was that. But like I see these kids that we serve at Merewood where I work and they're like, you know, they just, they, they get good treatment. They get, they get equine therapy, they get, it's like personal development boot camp. I mean when I was in the hosp - I was forced into treatment that there was nothing, there was no talk about.
Krista: It was really, you know, not that. So anyway, I'm really, I feel really blessed to work in a place where, you know, they get fed really good food, they go surfing and they do adventure therapy. They do equine with the horses. I know they have groups all day, they do different groups. They're in school still so they don't lose their credits, which is like, that's a big, big part of when you're young and you get forced into treatment and then you like lose a semester. I mean, like that doesn't happen with the boys that come to Muir Wood, so anyways, I'm still doing Families Healing Together, but not as much anymore. Like, I kind of have, my heart has found a home with this facility that I'm working with now. I love, I'm still helping families and Muir Wood graciously sponsors me to continue to do that, so anyone can call me and I'll help connect them to treatment and work with them.
Rudy: They're lucky to have you. Last topic before we bring it home, how was your family situation like, do you ever struggle to say, take your own lessons that you teach and apply them into your own family situation?
Krista: Yeah, like from a cosmic perspective, I think that, uh, I think that I created Families Healing Together for myself because I would need it when my teenagers became teenagers. So I haven't - I have an 18 year old and he was born in 2000. His birthday's in September, and then I have one turning 14 in July and a seven year old. And yeah, everything in Families Healing Together is all of that curriculum is lessons that I need super big time with my own kids. And I don't think I'm a perfect mom by any means or even a great mom. I think I'm mom. Okay. Mom. And I'm grateful that I have access to, you know, and that I have interest in studying and practicing things to help me be a better mom. And a lot of that is stuff that's, you know, in the Families Healing Together, recovering our families class. Yeah.
Rudy: Now, are your, are your older kids ever like, "don't try that Families Healing Together bullshit on me!"
Krista: No, I don't think so. I mean, I don't know.
Rudy: No, I mean, but
Krista: So people though, like people that take the class will be like, "you know, I tried this with my relative and they were like, what, what are you doing? Like, you don't sound like yourself." So like this happened, but, I mean, I don't know. Not, I don't think my kids sometimes, I mean, you know how like if you're like a conservative, you'll raise a hippy? So that, that kind of has happened in my family in some ways. Um, but, but yeah, I don't know. That's personal stuff, I guess.
Rudy: Yeah, no, it is what it is. And something, something that I've heard time and time again, especially when I interview parents, is that you can be the best parent. You can be - everything by the book and just be a model parent and do all the lessons and everything. But if your kid's an asshole, like there's only so much you can do.
Krista: Well, I mean, if your kid's an asshole, there's probably a reason they're being an ass. Yeah, totally. Yeah, but this is, but it's, I mean, relationships are hard, so hard, just friends, relationships with friends are hard. Relationships with romantic partners are hard. And then parental child relationships, that's a whole other level of hard. It's really hard, you know? I mean, it's like all of your stuff is triggered as a child in the family dynamic. All your stuff is triggered by your parents. And when you become a parent, you know, it's like you're getting it from all these layers because you're seeing yourself act in ways you don't want to act. And then you're mad at yourself for acting that way and then your kid is triggering you because you're like, you know that that reflects poorly on me or whatever. I mean it's just like it's a minefield parenting is a minefield. It's really work.
Rudy: Yeah. I heard from one parent who's anti-forced treatment said, "you know what, sometimes my kid just makes me so mad. I just want to force the meds down their throat." So just, okay.
Krista: Yeah. Uh, I mean, yeah. So, so I'd meet with that parent. Like if I were working with that parent, I would spend a lot of time with that parent talking about their anger because that's, that's unexpressed, you know, my suspicion is that probably their, um, you know, they've just come to a point of complete exhaustion. And so well, you know, how can they in the future not let themselves get to that place of complete exhaustion. So like what are all the things that they've allowed to happen by not sending from boundaries that have got, that have had them land at that place where they're like, cause there's this, there's this family involvement continuum that I like to talk about. That goes from neglect to overprotect. And I see families wildly swinging from this neglect overprotect. So they'll do the overprotecting where they try and control everything. They try and arrange all the outcomes. They try and set them up with volunteer work and community service and, and all these things that are good for them because they know what's best for their relatives. And of course the relative rails against all of that because they have their own ideas and then they swing. Then the a big fight will erupt and then the parent will swing back to neglect, which is I'm just going to shove the meds down their throat. Right. Like in that case example that you use. But neglect looks like all sorts of different things, you know. And like neglect sometimes looks like forcing someone to treatment because they can't deal with it anymore. Not, because like sometimes it's not happening for the right reasons. It's like, you know, yeah. Right. So, yeah.
Rudy: You know, you know, Krista, if I ever have kids, which is not gonna be any time soon, um, I'm definitely going to have to take one of your classes because I'm, like I've said before, I can't say enough good things about it. I'm glad that you invited me into the program that you reached out, you took that risk and that you took the risk by coming onto No Restraints. Even though like we're not on Facebook Live and you thought we were only gonna talk for like 20 minutes and look at it's, we're, we're about to hit the 50 minute mark. So, okay. Like I always say, it's always the shy people who end up talking the longest and having the most fun. All right, so thank you. I'm going to let you have the final words, um, even though I'm going to talk after you or whatever. Sure. Yeah. Anything you want to promote, any links, I'll make sure to leave the links to the stuff we talked about down in the comments below so people can check it out and can stay updated. I know you have like a contact form on there, so when you do your next online course, I hope people can check it out.
Krista: Yeah, I mean I, and then if you are living in the Menlo Park, San Jose area, uh, I'm running a support group on Thursday nights. So call me (415) 335-9783. Call me and tell you about that.
Rudy: Do not call this number for any other reason. (laughs)
Krista: No, whatever. It's fine. Call me. Yeah, I'm, uh, I'm just starting this support group and I haven't done one in person in a long time. I'm really excited and I've been, I've been, I have the space but people don't know about it yet. So it's, it's quiet. So if you come you, you know, it might be just a very small, intimate, sweet groups. So, and the point of the group is just to get support for yourself. If you're somebody that loves someone struggling with mental health and addiction issues and I can help.
Rudy: And I might, I might just show up randomly. You never know, so...
Krista: That's cool. That'd be cool. Yeah. But I really want to be able to connect families to services that I think are, that are good services, good treatment programs and um, and I want to support families to connect with each other because they're their own, you know, when they can build peer support, that's really powerful. So any, I want to be a channel for supporting that
Rudy: And the website is FamiliesHealingTogether.com.
Krista: Yeah. And MuirWoodTeen.com.
Rudy: Cool. I will definitely leave that below. How can people follow you on Snapchat?
Krista: So I don't know. (laughs)
Rudy: Just kidding. I'm just kidding.
Krista: All right.
Rudy: Okay. All right.
Krista: Snapchat. Should I be on Snapchat?
Rudy: Every once in they come out with a cool face filter. So by all means, knock - you'll, you'll, you'll be more popular with your younger kids. How about that?
Krista: Thanks. Great.
Rudy: Okay. Thank you so much. Thank you for rolling with the punches. Hopefully the great Facebook Outage of Today is gone soon. So I can upload this because it's great content and it deserves people's awareness and hopefully it when you watching this, whatever it is today, tomorrow, this year, um, please leave comments, um, and make sure to still ask questions. I'll make sure that Krista can get to them when she can within the midst of her busy, busy schedule. So that's this week's show. I'll be back next week and the week after that for No Restraints with Rudy Caseres. Thank you, Krista McKinnon. I'll see you all next week. Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Eduardo Vega. Eduardo is the founder and CEO of Humannovations, a social impact organization that provides innovative solutions and training to the health, human services and arts sectors. A person with lived experience of suicide and consumer advocate he helped found the national Destination Dignity! Project, the California Association of Mental Health Peer Run Organizations, and the world’s first suicide attempt survivor task force (through the US National Action Alliance for Suicide Prevention). We'll be speaking face-to-face in Downtown Los Angeles about his life and work - including his new training program for peers called Growing Through. Halfway through our discussion we get kicked out of our meeting room and had to scramble to relocate which was a first for No Restraints but I welcome all challenges!
You can learn more about Eduardo and his work at humannovations.net
Content warning: suicide
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Eileen Davidson AKA Chronic Eileen. Eileen Davidson is a mother who writes about life & advocacy with a triple whammy of arthritis & all that comes with it. She is also an ambassador for The Arthritis Society and a member of the Patient Advisory Board for Arthritis Research Canada.
You can follow Eileen on Facebook here and Instagram here.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Lee Thomas. Lee is an international speaker, writer, and advocate based in Calgary, Alberta. Lee speaks to groups of all ages and sizes about mental health and mental illness, with a particular focus on eating disorders, stigma, and 2SLGBTQ+ issues. They are also the founder of the #MyDefinition poster campaign. In 2017 Lee was recognized as one of CAMH's Difference Makers in Mental Health. I spoke with Lee face-to-face in Dallas, TX at the 2019 HealtheVoices Conference. All views expressed by Lee and I are our own.
You can follow Lee on Facebook here and on Instagram here.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Kelly Davis. Kelly Davis's lived experience with mental health diagnoses and trauma are at the center of her drive for transforming how we support individuals and change systems and services. She writes and speaks about her experience and ideas around the US and has developed trainings for young people rooted in empowerment and positive psychology. In 2018, she helped plan and lead the first national youth-run and youth-focused mental health convergence funded by SAMHSA. Kelly is currently training to become a certified applied positive psychology coach. Topics discussed include eating disorders, body image, bipolar, suicide, substance abuse, and advocacy.
Follow Kelly Davis on Facebook here and on Instagram here.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
Rudy Caseres: Hey everyone, welcome to a brand new episode of no restraints with Rudy Caseres. I'm Rudy Caseres obviously, this is episode 41 I just realized last night going on to no restraints.net where you can see all past episodes that there was two episode 12. I just totally screwed up. So good on me for that. This is episode 40. Last week was episode 39 with Melody Moezzi, which I got to talk to her right in San Diego, in person. So that was awesome. Hey Heather, I appreciate you. You probably got the notification. So shout out to you for the early comers. My guest, Kelly Davis, is gonna talk about all the cool stuff that she has going on in her world and I'm a big admirer of her, pretty much every guest I have on here except for like one or two to be honest, I've been a big admirer of so without further ado, let me bring on my guests. And if you're watching this live, obviously let us know you're here. Let us know where you're from. Ask questions for Kelly. If you have questions about suicide prevention, if you have questions about bipolar eating disorders, body dysmorphic disorder, you name it, she is the person. Without further ado, let me bring her on and tell the whole world the whole no restraints. Universe, galaxy solar system. Who is Kelly Davis.
Kelly Davis: Oh, wow. Awesome. Hi everyone. My name is Kelly. I'm really excited to be here with you all today. A little about me. So I am in Washington DC right now. I am a mental health advocate. I talk about my lived experience. I do some more policy oriented work, my care lot about youth mental health, college mental health. I'm a yoga teacher. I do all kinds of sorts of stuff. But at the core of everything that I do and all of my beliefs are, the idea is that people with lived experience should be in leading roles and all of the decisions that we make and that there's something extremely, extremely valuable about that lived experience and many of us can really help ourselves and one another. And that kind of, for me, it's through all of the different areas that I'm involved in.
Rudy Caseres: Now you're one of those few people. I can't find anyone to say a bad thing about you. I mentioned your name, I see you on, on social media. You're just, everyone loves you and loves what you do. So if you don't know Kelly Davis is already, especially if you're a mental health advocate, you need to know because she is the real deal. She's not going anywhere. She is a hero. How do you like that?
Kelly Davis: Well we'll see if they don't like me by the end again.
Rudy Caseres: Well, before we get started with the tough questions that I ask now let's get some more shout outs to Jacque Christmas and Joelle Marie and again, I appreciate you Heather. Heather is nice. I know her personally. She lives nearby so I always appreciate her comments as well. So you have any questions? Feel free to ask. Heather, feel free to share with your friends who might be interested, even if they're not open about mental health. You never know who might be struggling in silence. So let's get on to your early days as a mental health advocate because obviously don't get some fault in this field without having their own mental health journey. So if you feel comfortable with that and you probably do, since you've shared your story a million times at this point, how did this journey begin?
Kelly Davis: Yeah, so my journey really goes back to being a young kid. I mean, my first, I remember my first kind of eating disorder thoughts and behaviors around seven and as a kid I always felt different from other people around me. And the way that I usually use to describe it is that it, it felt like my feelings were too big for my body and I didn't have the language to communicate with other people when I was, when I was thinking and feeling and I didn't see it in them. So I always felt emotionally out of place and also just physically uncomfortable and self conscious about my body. By the time I was 10, I had my first suicide attempt, got linked in to therapy because I mentioned to people at school that I wanted to kill myself. And from that point had all different sorts of interactions with all different levels of services and treatment, inpatient, outpatient day, day programs, IOP, a bunch of medications ended up with, well, I'll get to that, but really, really struggled throughout high school. And ended up having three suicide attempts. Uh, when I was in college, I was diagnosed with bipolar disorder when I was 19 and basically hit a point where I got this message from, you know, from, from doctors, from what I was reading online from some people around me that once you are diagnosed with bipolar disorder, you have a serious mental illness. You know, maybe college isn't the place for you. Don't stress yourself out too much. Your life's going to be about symptom management now and all those different things. And, I felt like I had three choices. The first choice was I was going to keep living the way that I lived in kill myself. I could just spend the rest of my life listening to the ideas that I shouldn't push myself in a doing anything outside of my comfort zone or I could try to find any and everything I physically could to help myself. And that's what I ended up doing and that's how I got involved in the positive psychology work is I tell this story I have and now I have it as a tattoo where I was on this website called stble upon, where you basically would just press a button and it would populate different content. And as I was doing this, a picture of an elephant came up and it's sad when elephants are babies and they're in captivity. They use these chains, did keep them from running away. And when they're fully grown, they use the same chains and they could easily leave. But they've been trained to believe they can't, so they don't try. And that, that message and that idea really stuck with me. And it was like, well, I know what the other paths look like. Let me try everything and anything I can do to get better myself.And got launched into, uh, hooked up into like the peer support world and self help and recovery and all of those things. And once I started getting better, and part of that was yoga, but once I started getting better, I found out that there were other people who had been told similar things and who had felt similar ways about themselves who went on to live full, exciting, engaging lives, not only in spite of, but because of, and as a result of the things that they had been through and since I realized that I've started doing the nonprofit thing. I was president of my chapter's Active Minds and turned out to Bazelon Center for Mental Health Law. And now I've worked at Mental Health America since I graduated college for the past three and a half years. And it's really just, you know, like I can remember being a little kid and looking out at the moon and not understanding my feelings and not understanding the world around me and thinking there's so many people in this world, there have to be a few other that feel like me and I'm going to push through all of this and find them.
Kelly Davis: So that's a long way of saying, you know, this is where I came from and the work is so, so like deeply, viscerally important to me and I just feel really honored to get to do this stuff. Then any way that I can contribute and help I'm and support and share information about what, what helps and what not to do and all of that stuff isn't foreign to me.
Rudy Caseres: No, I'm glad you're here. I'm glad you stayed and fought. I've noticed the people who bounce back the best are the people who just completely reject those determinations by doctors and everyone else that they're just going to be sick for the rest of their lives, never going to have a full-time career. And it's really about proving them wrong as much it is to proving it to ourselves. And in my opinion, the people who suffer the most are often the ones who accept those false determinations that they can never improve. And I hope more and more people, and I think peer support really helps with that because you have other people who have similar diagnosis, similar experience. Like no, it doesn't have to be that way. It doesn't have to be death sentence. So hats off to you and other peer support specialist who really do great work and lifting each other up.
Kelly Davis: Yeah, I mean even on that note, I think I actually, and I know people, you know, some people really identify with the diagnoses and the labels and they find them helpful. And I think when I was younger it was really helpful for me to have something to point to and say, Oh, this, this describes what's happening to me. It's not just me by myself and the world. But I've been given I think 12 or diagnoses, so I don't really strongly identify with them. Like I understand that their usefulness and I understand that other people find them useful and like we'll reference them by for me, once I started asking questions is when I started doing better. And that's, that's not, doesn't have to be that way for everybody. But that was, it was that way for me.
Rudy Caseres: Yeah. And I mean for the most part I agree with the symptoms that I've had or the attributes as I like to say a bipolar but I am so much more than that and it's part of my identity. But I am Rudy Caseres, first and foremost, there was only one Rudy Caseres and there was only one Kelly Davis and shout outs to, uh, David Susman who is a great person featured, I think both of us on their website. Frankie and Larry, who's new on here. So welcome. This is No Restraints with Rudy Caseres, I host these shows every Wednesday except for next Wednesday, which I'll get to you at the end. And you can see all past episodes at norestraints.net. It's great place to go to. This is already episode 41 so you get lots of catching up to do, Larry McNabb. So when did you get to a place and first off, shout out to Active Minds because I am a past chapter president as well and I really credit that with getting my life together. So good work there. When did you feel like you were at a place where it's like, oh my God, like everything starting to click, I'm getting all these opportunities and like I feel like I am the master of my own journey.
Kelly Davis: Uh, you mean in the advocacy sense or in my personal recovery sense.
Rudy Caseres: That's a good question because I mean, for me and maybe to my detriment, I don't really draw a line between the two because like I talk about mental health, like I'm going to a mental health advocate 24, seven maybe I shouldn't be, but if you can delineate that, let us know.
Kelly Davis: So I think my mental health advocacy came maybe, let's see, how old was I? Maybe like a year or so into my, like for the first time feeling like I was doing, I was doing yoga, I learned a bunch of DBT skills. I took a break from, I'm sober now, but I took a break from drinking then and you know, spend time at home with my family. And then the way that it worked out for me was I was five years out from my high school suicide attempt and all of a sudden got this urge to write a blog about five things I learned since my time in the psych ward and just wrote it in my journal and was like, you know what? I'm going to submit this to Thought Catalog and just sent it over and woke up the next morning and it was approved. And then I just started about mental health all the time. So it was just like a sudden surge in blog submissions that kind of launched me, launched me into this world because before I always felt like everybody kind of knew that I had all of this stuff going on and I never, when I tried to control the narrative, it was more like it wasn't less healthy ways. So this was kind of my first attempt at saying I'm in control of my story and I get to share what I want you and this is what I want to share it, but I feel comfortable sharing with the world now and over time just got, you know, more and more stuff that I shared and said yes and say yes to almost anything and everything I'm invited to do or writers saying. And it just kind of kept building on top of one opportunity on top of another.
Rudy Caseres: Now was the substance use a form of self medication and how did you get to a place where you can be sober?
Kelly Davis: Yeah, absolutely. So I actually don't really ever talk about my sobriety. I am about to have two years, so sober. So it feels out of order because I was already doing mental health advocacy and I hadn't stopped drinking yet. But from the first time I started drinking I was just like, oh, this, I'm keeping my body and this is wonderful. I can get as messed up as I want. And then having that identity is like a party person and made me feel kind of untouchable in a way that I was always so sensitive and so worried about things. It's like if I could build that armor of identity, it felt really protective to me. So I drank for like 10 years and actually wasn't a relationship with somebody who was sober, who told me, uh, you drank like you have a problem. And it was, I was like, okay, I'm going to try to not drink. And it was really hard and in hindsight, it's wild to me that I didn't think I had, I didn't think I had a problem. I can never drink without blacking out. It was what I say is like, I didn't drink to take the edge off. I tried to disappear. It was like I think part of it was like PTSD and, and social anxiety. It like he gave me kind of relief from that, I'm from feeling like so hyper vigilant, not only that somebody was going to hurt me but felt like I was going to do something wrong or say something wrong. It's just inherently bad and unlikable. That alcohol really helped, helped me. It's not a great long term solution, but it was definitely adaptive and I was using it to get through some of the issues that I have with myself. Yeah.
Rudy Caseres: I'm glad you're sober now and you don't, I've always wondered, this may be a dumb question, but like, you know, when people announce their sobriety in public and everyone starts clapping, like does it ever feel like weird to you?
Kelly Davis: Uh, when other people do it or...? Because I admit it, too.
Rudy Caseres: Yeah. Like how does that feel? Is that just like an AA thing that you have that people are taught or, I just always -
Kelly Davis: I think it's just things that I think it's, I mean it was hard and like it was really hard. And I think people are proud of it. I also think, like for me, there've been times like I waited until I think six months sober to publicly mention that I was sober. And there have been times where I think I wanted to drink again, that I didn't want to tell people it wasn't so bad anymore. So that kind of social pressure was helpful than me. But I think it's a combination of pride and I think too, it's like I'm having that, I think the identity piece for, you know, depending on who you ask, help some people as like I'm a sober person. And I think like that shifting so hard from I'm a party person and I do wild things to I don't drink anymore. It was helpful then to have that language and to share it with other people.
Rudy Caseres: Yeah. I'm thinking like when I do my next presentation, I'm going to end with saying that I've been three years free of manic episodes and see if people start clapping.
Kelly Davis: Yeah.
Rudy Caseres: Speaking of which, let's talk about bipolar and walk me through that initial discovery and how you start presenting and those initial episodes.
Kelly Davis: So I think it was always kind of up in the air what people would diagnose me with like my, so the therapist that I saw from middle school and high school was pretty resistant to like, she would say it's a mood thing but like didn't say either, you know, either way. And there was the, I think it's confusing. I mean like when I eventually got diagnosed I went to college and had been on a bundle of different medicine since I was 14. And I was like, oh, this is a new life, new me, I'm just going to suddenly stop taking them. So I did that, which wasn't great, is like not necessarily medically advisable and this drinking really heavily, and got involved in some, some toxic relationships and I just, you know, I wasn't, I ended up getting my parents to have to spend a lot of money and made a lot of really awful decisions, and was just really like nothing, nothing like in hindsight what I was doing did not make sense. And then I crashed really hard and like four days could not get off the like could not get off of off the floor, just hours laying on the floor and could not function and there were other things exacerbating yet in my life. But, that was the first time anybody had used that word towards me, about me.
Rudy Caseres: Now is mania something you still experience?
Kelly Davis: I mean like I can see, I don't know. Like, I can see that like after I graduated college, I was suddenly really spiritual for like six months and like was constantly posting on social media and thought everything in the world made sense. So it's like I didn't have necessarily any bad fallout from that. But like now I'm like, I don't think I think this, I don't think I really think any of those things. So I don't know, like, not in a way that now I deal more with the depressive side of things and also like PTSD and association are things that I deal with a lot now. Less the kind of mania, Hypomania side.
Rudy Caseres: Now disassociation, that's something that I've experienced in the past. Can you talk about why you experienced that and how it feels going on in your head?
Kelly Davis: Yeah, so I mean, I have like one vivid memory of experiencing it in middle school during a sports game, during a field hockey game, I just have this memory of like feeling really out of body and like every, all the speed of everything felt really distorted. And I'm like, nothing. Like I didn't feel like I was there. , and then I think with me, I'm getting sober and … like I have a lot of tra(uma)… with men. And I think like I was dating somebody and I got sober at the same time and my body just reached out. So for the past two years, it's been really pretty serious with disassociation. So for me I experienced depersonalization and derealization and I feel really excited to at least get to talk about this because I've had a really hard time finding stuff about it and finding like communities with to connect with around, around this. So for me, like the depersonalization is like, I don't feel like I'm real. And then on the derealization and it's just like nothing around me feels real and like nothing feels like has any consequences and I'm just like floating and like nothing makes sense. And it's been pretty like chronic for me for the past couple of years. It's really scary because when it starts, I think, I mean, I think it's similar to like depression or at least for me, it's like once it starts, you don't know what it's going to stop again. And that's what really freaks me out. And that's part of where yoga has been so helpful for me because it's taught me how to, how to observe, how to be an observer and like disengage from immediate emotional or any kinds of reactions to things where I can say, okay, like this, this is happening now. This is a real thing that happens to other people. It's happened before. I don't know when it's going to stop, but eventually it will. And like most of the time that that helps and eventually it does stop. But I've seen limited stuff about that. I think that a lot of this stuff that people are talking about around trauma and complex trauma and developmental trauma, I really wish had been more available or known when I was younger because I think that that work would have been really helpful to me earlier. And some of the things that did happen may not have happened or may have been kind of lessened if I had those resources to learn.
Rudy Caseres: Yeah. And you mentioned the body dysmorphic disorder as well. And do you know what's at the root of that? This is something I've dealt with myself as well, and I think that's the kind of thing that no matter where you get in life, and I might be wrong, it's something that's just always there in the back of your head and it's really a lifelong struggle. How do you feel about that?
Kelly Davis: Yeah, I think part of it is like having internalized this… generally very obsessive thoughts and I think when I was younger I, for some reason linked up this idea that like on one side being beautiful with solve all my problems and on the other side, like I was an irreparably hideous, disgusting person and those ideas would just surge, like to the point where like, there were some weekends where I couldn't leave my room because they didn't want anyone to look at me. I don't necessarily know where it came from. I'm sure there's like some social components to it, but I think like one of the things that was really hard for me growing up trying to talk to people about it was that the response I got from other people was everybody's self conscious. And it was like, I literally want to cut my skin off. Like I'm not not pink. I don't know if that's self conscious. But I can't go out because I don't want people to see me. And I don't think anybody should not want to leave the house because people look like people. Right? And yeah, it's just been, it doesn't for me, it doesn't go away completely. And cause it's like I can look in the mirror and then five minutes later I look in the mirror and my face is different and my body was like 15 pounds heavier. And it's really disorienting too, because I like, don't ... have - I had few experiences, like I don't feel like I have a stable idea. Even, I mean, not that it matters. It doesn't matter as much to me now honestly that so much of my self esteem and value like is rooted in contribution. That like that has kind of helped me shift my energy and focus and kind of fight back against those things. But yeah, I don't know. It just like I feel uncertain about what I look like and I don't know if other people feel that when they don't experience body dysmorphia or not.
Rudy Caseres: Yeah. I mean, for me, I've dealt with weight fluctuations my entire life. I've been 320 pounds. I've been 130 pounds and everything in between. And for me, if I gain or if I look on the scale, I get a physical, I don't have a scale in my apartment anymore. Like I just can't deal with that. But if I gained 10 pounds, I guess that's like the end of my role. Like I might as well have gained a hundred pounds. And I know that sounds like I'm fat phobic because we live in a world where thinness equals beauty. Like even in this day and age where we celebrate curves, there's still a part of that society that's still pressures us to be thin. And so, yeah, it's something that I think I will always struggle with. I hope that I don't ever get to a place again where I'm starving myself and just completely hating my body. But yeah, I constantly look in the mirror. I constantly feel guilty if I ate a big dinner or a big dessert, but more people here talk about it, especially men. And I'm glad that we have this platform, No Restraints where I can have people on, and we can talk about this in a very real way. And something I've noticed from your social media posts is that you'll post a pictures. Let's just say that our intimate and I wanna know, like when you post these pictures, are you free to what, what, what the outcome is going to be, like, what the comments are going to be. If people are gonna think that you're just fishing for compliments, what goes on in your mind when you post pictures like that?
Kelly Davis: You got to be more specific. Do you mean like, like the yoga pictures that I used to post? Do you mean like the like word, like the way that I am talking about my experience? Like what?
Rudy Caseres: So if you're posting a picture where you're not even wearing a, like you could see what's under your shirt, basically. You're very, very tight clothing. Let's just say that.
Kelly Davis: Okay. Huh. I don't know. I mean like it's a weird thing. I think that I've struggled a lot with my body recently, so I don't know that I do that as much now. But I don't know. It like fluctuates. I don't ever feel like I'm fishing for compliments. And I don't really care what people have to say about it. So yeah, I dunno. I'm definitely like, it's your body do it everyone kind of person.
Rudy Caseres: Yeah, I agree. I mean, I was still working up the courage to do like a shirtless selfie. I'll get there. But moving on you're still in your 20s and like I'm getting old. I'm 31, gonna turn, 32 in a couple months so you have more to look forward to than me. So where do you see yourself going? You're obviously in a good place in your life professionally, it looks like personally as well. Where do you see yourself going and how do you see yourself? Like, I guess I'm always working on that self care and always I'm working on your mental health.
Kelly Davis: Yeah, I'm not that much. I am 26, so I'm not like early twenties. I mean, I don't see like, I mean, so I just finished a certificate in applied positive psychology. And I'm in an applied positive psychology coaching program right now. So I'm starting to teach workshops on those skills and we'll be starting to work with people. It's one-on-one and in groups, has coaching. But I think that I'll always be involved. I don't see any future where I'm not in this field. I think I'll always be working from a perspective of elevating lived experience voices and trying to create and share resources for other people. Because I just really believe in that the values and ideas of communities of people. So I don't know, I mean, 'm definitely going to stay in this field. I'm really interested in working with young people, with lived experience. I think that so much of my identity got formed around the idea of being a sick person and that I wasn't really taught skills that would have helped me a lot. And I wasn't taught skills in the context of if, you know, other people who were like me who were in recovery or, you know, whenever they want to call it. I didn't feel that sense of empowerment. It didn't, it wasn't building skills. So any ways that I can contribute to kind of this, you know, shared knowledge and shared empowerment and ways that we can work together to kind of make the world better for everyone. I'm really firm believer. Like why like positive, especially as like I don't have before my struggles. So like the recovery word, like I don't, I'm not recovering to anything. Like this is just me and like I was never different. So I liked positive psychology because it's this idea of flourishing, of like all of the like bringing different elements and parts of your life together to create a life, a good life for yourself. And what I especially like about it is it's action oriented. So like, I don't think the point of what we do is to get people to get by, right? Like, I think the point is to give everybody the skills so that we can all come together and make everything better and, and really, really like, I want to be involved on both levels. Like I want to work directly with people, but I also think that if we just bandaid things, there's too many things that are underlying all of this stuff that are a lot of the real problems that need to be addressed. So I’m just excited about, you know, I identify with this as more of like an activist movement and want to stay involved. So not just, you know, working individually with people, but so that everybody can get better. We can create a fair and more equitable world for them, too.
Rudy Caseres: That's, I agree. No, and I feel like we're headed towards that. I feel a seismic shift in our society and I hope it keeps moving forward. Last question before we bring it home, you said you worked with a lot of youth. What is something that you tell the youth that you work with or something that you would tell young advocates watching this? Yeah. What is your hope for the future? What is something that you want to see them carry on?
Kelly Davis: Hmm. That's interesting. I don't know. Like I've heard a lot of people talk about how they can't. So I recognize that I'm many ways have lots of privilege but am horrified when I hear stories of young people who want to do this work who are told that identifying in will ruin their careers. So if I, you know, I just had a conversation with the student and she was like, at my internship they told me that if I talked about my diagnosis, it's like a death, the kiss of death. And I really believe that like we as a community, it's really important to identify it because we have the answer. It's like one of the, one of the things that I say a lot is is in other fields, right? Like, Amazon's not going to make the product that the consumers don't want. It just doesn't make sense. And like mental health for some reason is the only world where the consumer is wrong because they don't want what's happening. And like this idea that is just so important for us, identify it and say, no, this is wrong because you're not measuring the right things. You don't care about the right things. And we're the ones who need to come in and really be involved in and restructuring and redoing everything. So it's not, you know, does this work on your diagnostic criteria? It's 'do people like me live well?' , so I would say like keep fighting. And the best piece of advice I think that I use, that I got from my dad is 'all they can say is no.' So like always ask if you want to do something. I always ask, I say yes to everything that people ask me to do. And a lot of the things that I've, oh, the opportunities that I've had are just like cold outreach to people and most of the time no one responds, but when they do it, yeah, it's good.
Rudy Caseres: No, I love to hear that. I like how well we're getting along. Like there's no, there's no conflict at all. Which some people want. But I'm glad that we agree on so much. This is our first time talking face-to-face. So that's great. And before we get into your final words on, let's give some last shout outs. Heather with a great comment. 'Thanks for talking about dysmorphia and disassociation. I have a few thoughts I entertain for myself. 1) life is change - change is one thing I can count on - I am safe and I can't get it wrong. 2) In any moment I am someone's goal weight and someone's feared weight. In this moment I am enough. I will never be younger than now, and this moment contains all my power and choices, so I choose self love.' Much love to you, Heather. You’re doing great work in more ways than one. Shout out to Barbara who is always watching from Alaska. I appreciate that as well. David Susman says, 'your focus on strength, empowerment and growth is so important.' And again, Barbara says, 'I'm glad you're beginning a new phase of generational learning and endurance. Thanks for sharing. The old school doesn't cut it anymore.' Awe, there's still, there's still use for you. Joelle Marie says, 'talking about my experience has brought me nothing but good things in terms of personal progression, moving towards goals. Don't let others set your priorities. I guess?' Great comments, everyone. And if you're watching this later on the day, I get it, later on the week, please feel free to still leave questions and comments. I will make sure to get to all of you. Also drop some links to stuff that Kelly Davis has been featured in and how to get in contact with her. And that brings us to final words, words of wisdom. How people can get in touch with you, how people can stay connected with all the amazing things that you're doing? The screen is yours.
Kelly Davis: Yeah, so a lot of my work I post on Instagram, so my Instagram handle is KellyABDavis. You can also feel free to add me on Facebook. I should probably get more things. I should probably get like a, I dunno, something like a Facebook page or something to, you know, or whatever to organize everything. But that's where I am right now. If you're interested in positive psychology, I am going to start some trainings on positive or post-traumatic growth, strengths, growth mindset and self compassion in May that I'm really excited about. So yeah, if you follow me, you can learn more about how to sign up for those. And final words… I don't know. Huh… This is a great question. I don't know. I think we need everybody and when everybody, when we make sure people get adequate resources and support, we can make everything else better.
Rudy Caseres: And on that note, thank you so much Kelly Davis for agreeing to do this. I'm glad we were finally able to sync our schedules up and like most of my guests, I hope we can connect in person someday in our travels, in our advocacies. So we share common goals and I appreciate that. I appreciate the work you're doing and I know that you're in this for the long haul. So I look forward to following your journey and future amazing things going on in your professional life. So again, thank you all for watching No Restraints with Rudy Caseres. Thank you again to Kelly Davis. Next week I'll be in Dallas for the HealtheVoices conference. So I'll be able to interview at least one guest, maybe even two or three live from the conference in Dallas, Texas. So check out for that. It'll probably be Thursday or Friday because I leave Thursday, so there won't be an episode Wednesday. Sorry about that. But it'll be worth the wait. Until then... Take care. Enjoy your week. Enjoy each other because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Melody Moezzi. Melody is an Iranian-American writer and attorney. She is also the author of Haldol and Hyacinths: A Bipolar Life and War on Error: Real Stories of American Muslims. I had the privilege of speaking with Melody in person which is always prefereed when I interview someone. I had been wanting to meet her for quite some time and after spending an afternoon with her (along with my wife and puppy) I can definitely say it was worth the wait. Watch as we talk bipolar, religion, hospitalization, suicide, human rights, and more.
You can learn more about Melody and her work at MelodyMoezzi.com.
Follow her on Twitter here and on Instagram here.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
Rudy Caseres: 00:01 Hey everyone, welcome to episode 39 of No Restraints with Rudy Caseres. I'm Rudy Caseres, obviously. If it wasn't me, then I don't know what you'd be watching. My guest today. Melody Moezzi. Glad I got that right.
Melody Moezzi: 00:16 Yeah.
Rudy Caseres: 00:16 I've been saying other things forever, so I finally made sure. Um, People mispronounce all - my name all the time. So...
Melody Moezzi: 00:27 I've done it. So I know. (laughs)
Rudy Caseres: 00:27 Cool. So if you're watching this live, let us know you're here. If you're watching the first time because you're a fan of Melody like I am, please let us know. We've got people joining already. I appreciate that. Ask questions. Um, I have a little description below, um, in the post and I'm going to ask the question, the kind of question that I ask every single guest when I have them on, no matter who they are.
Melody Moezzi: 00:51 I know this question. (laughs) I've watched before so I know the question.
Rudy Caseres: 00:55 She's (points to Melody) - she's one of my
Melody Moezzi: 00:55 And I don't like talking about myself in third person!
Rudy Caseres: 00:58 She's one of my, she's one of my biggest fans. So she's watched every single episode every single week. Without further ado... Hi Paige. Paige has also read your book and said good things. So feel free to ask questions. Who is Melody Moezzi?
Melody Moezzi: 01:15 Again, she is somebody who doesn't like to talk herself in third person. So I am a proud Iranian American Muslim author, attorney and activist. The reason I bring all those identifiers in is because, uh, that's one partly what I write about and to where I see a lot of stigma, persecution, discrimination. So in an effort to fight them -
Rudy Caseres: 01:39 Now I'm going to try to ask questions that you haven't been asked a million times. So, but I want to get the obvious out of the way. Proud Muslim. Why in this day and age, this "Woke Era" where there's so much anti-religion, especially anti-Islam -
Melody Moezzi: 01:55 Yeah? Why would I say that or why am I a Muslim? (laughs).
Rudy Caseres: 01:59 Both. Go ahead.
Melody Moezzi: 02:00 Oh. Yeah. Um, well one, obviously it's important for me to say now that there's a ban as an Iranian Muslim, particularly, there's a ban on my people in this country, uh, that is the United States where we are right now. Uh, and yeah, I don't think there should be. I think it's unconstitutional. I'm a lawyer. I feel like I'm qualified to say that. Uh, so that's why partly it's important. I think the discrimination we faced a hate crimes are on the rise. So all of that. Uh, otherwise I think religion is something you should keep to yourself. Like I really like, I'm not trying to convert anybody. I just, I think it's, uh, something that the only reason that I would be public about my religion is if we're being persecuted. And we are being actively persecuted in this country more than any other religious minorities. So...
Rudy Caseres: 02:41 We got our first question from Paige Reitz, superfan. (Reads laptop screen) "Melody Moezzi, your Haldol & Hyacinths" uh, which I'm going to go pick up from the kitchen.
Melody Moezzi: 02:51 Um, I think it's right next to you.
Rudy Caseres: 02:51 (laughs) Oh, awesome. (holds up book) "Your book" Hopefully it doesn't come in backwards. "Haldol & Hyacinths book is my favorite mental health memoir."
Melody Moezzi: 02:59 Aw, you're sweet Paige.
Rudy Caseres: 03:00 (Continues reading) I love the way you weave in advocacy around race, ethnicity, and gender into the book. Intersectional representation is so important. Also, I'm beside a brick building, so signal is choppy. I'll rewatch later. That's totally fine.
Melody Moezzi: 03:14 (laughs) Thanks a lot, Paige. Uh, yeah. Well thank you. I, it's really nice to hear that cause there's plenty of people who have left bad reviews on Amazon (laughs) saying that "This was supposed to be a book about bipolar. I don't want to know you're Iranian or you're a Muslim." Like comes in the package, hence the intersectional part. Um, I can't really ignore, I guess I could, I could pretend that I was like a white guy, but I feel like that I wouldn't, I wouldn't like be able to pass. Right.
Rudy Caseres: 03:37 Yeah. You know, I mean, I've read probably 20 bipolar memoirs at this point. People even send them to my apartment. But it's great that your book is so different. It's funny. Yeah. And most people tend to think like, oh, it's about mental illness, so it's got to be serious and sad and you got to tell the whole dark days and all that stuff. And you do get there, but you never lose your sense of humor. I mean is that something, it's kind of sounds like a dumb question, but was that something that you were trying to go against - the typical, uh, bipolar mental health memoir type format?
Melody Moezzi: 04:13 Well, it's mainly because when I was in the hospital, too, a lot of, uh, mental health providers told me that I use humor as a defense mechanism. And I do like, I'm totally fine using humor as a defense mechanism. And I think like obviously at a certain point it could become an issue, but for me, like I have survived because of my sense of humor. So I don't, I think it's a very good coping strategy in some ways. Um, and I, I wouldn't like, and I do take humor very seriously in my writing. Like I don't, when I'm reading a book, I would like to laugh every few minutes. Like, I don't know if I'm reading a book for enjoyment and I'm hoping most of my books or something that you could read on the beach and not have to like consult 20 other books to be able to understand what I'm saying.
Rudy Caseres: 04:58 Yeah. You know, I, I consumed this book. Let me tell you, I'm the worst writer - reader in the world. I'm the worst (laughs) - That's a whole other story. But I'm, I'm the worst reader in the world. Like I, I mean I've had guests on this show where I skimmed through their books. (laughs)
Melody Moezzi: 05:12 Right?
Rudy Caseres: 05:12 I devoured this. Let's be honest.
Melody Moezzi: 05:13 The fact that you read books at all. Like I've, I've been a guest on shows where people have not even like skimmed the book, let alone read it.
Rudy Caseres: 05:19 I know. And I, this is, this is your copy of tha you're going to sign for me in a bit, But I had the soft cover. I don't know if you like soft covers. Those are hard to get the perfect grip on. So I was committed to this thing and so thank you for writing this and it's like, it's not even that big. I was like, and this is, this goes to show to like all the other bipolar writers, you don't need to have 500 600 pages.
Melody Moezzi: 05:40 Please don't. (laughs)
Rudy Caseres: 05:40 Trust. Trust us. Okay. I know your life is important. I know you want to get all your shit in but this, this is like perfect length because I could have read this on a flight to Boston or what have you. So thank you. Thank you. Thank you. I'm sure. I'm sure you're edit - you had to have a lot edited - cut out, right?
Melody Moezzi: 05:55 Not too much, but I don't, I'm not the kind of writer who writes like a thousand pages and then cuts it down. Uh, I write and edit at the same time, which any, I mean most writing teachers - and not including me - would say don't do that. Just write your first horrible draft and then go back. But I'm not really into writing the first formal draft. I just write, write and edit at the same time. Yeah. Maybe it takes longer, but then the draft ends up being closer to the finished product at the end. Yeah.
Rudy Caseres: 06:22 And I actually found a Typo in your book.
Melody Moezzi: 06:25 No, you did not.
Rudy Caseres: 06:26 I seriously did.
Melody Moezzi: 06:27 Oh, please tell me where it is.
Rudy Caseres: 06:28 Oh, I didn't I'll try to find it. No. I'm sorry.
Melody Moezzi: 06:32 The rest of you if you find typos (laughs) - please let me know where they are.
Rudy Caseres: 06:34 Yeah. (reads laptop screen) You got any more comments? Keely says, "This is one of my favorite books." Well, you have good taste there. And I didn't, I was surprised actually by how much is devoted to your pancreas in this book.
Melody Moezzi: 06:45 Oh my gosh. Well, I think mental health and physical health are not two separate things given that the, you know, our heads are attached to the rest of our bodies. Uh, and plenty of people think that bipolar is something that we have a hereditary predisposition towards a and a whole lot of other mental health conditions. Uh, so for me, I definitely have that predisposition, but no one in my family immediate family presents with it. Uh, so I don't, I think if I didn't have the issues with my pancreatic tumor, I had a tumor on my pancreas that was removed right in the middle of my pancreas. Any doctors out there, it was a mid pancreatectomy with a roux and y, um, also take out the gallbladder while they were there. Just, you know, good measure. So who needs a gallbladder? But I'm sure they'll find out. We do need gallbladders for something, but I don't -
Rudy Caseres: 07:35 Shout-out to all the gallbladders.
Melody Moezzi: 07:35 Yeah, I've been, I've been fine without it. Um, I'm doing all right. But yeah, obviously I don't think if I had the issues with - if I didn't have all of that. And I don't mean if I didn't have the physical, unless I wouldn't have mental illness, but I think if I didn't have the hospitalizations. Because those hospitalizations for the physical illness were deeply traumatizing in many ways. Uh, obviously I had no idea how bad it could get until I was in a psychiatric hospital at which obviously it was a lot. Not obviously, I mean we don't know. It was a lot worse. A Lot, lot worse.
Rudy Caseres: 08:06 Yeah. We'll, we'll get more in depth with that. Uh, thank you - people keep joining us. I appreciate that. This is No Restraints with Rudy Caseres. Episode 39. My guest, Melody Moezzi. We're talking about her book Haldol & Hyacinths. We also have our first book on hand, too. (holds up book) War on Terror cause we're going to sell a book today. Okay.
Melody Moezzi: 08:23 War on Error.
Rudy Caseres: 08:25 Yes. If you're watching this live and if you're not watching this live that's totally fine. People check these out - like, I've actually gotten speaking work booked because someone watched on my website, which I embed on like two or three months later on. So shout out to those people. Give me money.
Melody Moezzi: 08:40 I also do speaking.
Rudy Caseres: 08:41 Yeah, I know. Are you still on the, uh, this, the, uh,
Melody Moezzi: 08:46 I'm on the Penguin Speaker's Bureau and my literary agent has, is opening a speaker bureau. The (inaudible) literary manager lecture management.
Rudy Caseres: 08:55 And if you want to book us together, that's totally fine too. We'll take that money. So, and I'll, of course I'll put the links to both books as well. And you've got another book coming up, which I hopefully will get a chance to read in the not too distant future. Yeah, I know. I thought like, I would have to like track you down, like go to one of your book signing. So I'm glad that we're able to do this in person. Like this is, this is a high honor. Okay. Yeah. Show some love for Melody. You know, you're only like the fourth person that I've had on who's had a Wikipedia page.
Melody Moezzi: 09:25 Oh really?
Rudy Caseres: 09:25 Yeah.
Melody Moezzi: 09:26 Oh, sorry. Am I know it might be wrong. I haven't looked at it lately, so...
Rudy Caseres: 09:30 Yeah, that's, that's totally fine. And I'll leave more links down below in the comments. Go check that out. Uh, Jacque Christmas loves my tee shirt. Get your fucking dog fixed. That's not a statement. That is a way of life. Cool. I think we have like some kind of like weird filter on here. What the hell is going on that? So I was like a Christmas ornament. Yeah, I'll take that. Um, so I'm not even gonna touch this and ruin it. So Paige Reitz says," I super appreciate you linking trauma with so called hereditary mental illnesses. I think we only just, I'm beginning to understand the level of which trauma impacts our health and I can't wait to check out War on Error." There we go. We got one, we got one book sale there.
Melody Moezzi: 10:06 And the trauma and since you're great. Thank you so much for bringing that up. And I'm a big fan and I know you are as well of trauma-informed care. Um, and I - part of the trauma, obviously with a physical illness, but also I think being a minority in our life itself is dramatic. Uh, particularly right now. Uh, and there's plenty of data to show that if you are a minority, if you're facing discrimination, uh, our rates of mental health conditions that are induced, uh, and then like not supported by the society we live in our higher unfortunately, so that particularly among certain communities, uh, it's really important for me. I'm not native American, but the native American community, uh, it's been really bad. And the attention that gets paid to lots of different minorities, but I think particularly what's happening in the native American community that people are unaware of, uh, is incredibly disturbing. And I would hope that we could do something more about it. So I don't know if you've had any indigenous writers or advocates on yet. (crosstalk)
Rudy Caseres: 11:05 Hmm. That's actually good. I mean, I, I mean I have some indigenous blood in me. I'm an eighth Apache.
Melody Moezzi: 11:09 So that's you.
Rudy Caseres: 11:12 I feel like I feel like I have had someone on, but I don't want to like, I don't want to commit to that.
Melody Moezzi: 11:18 You gotta go to a reseveration, too.
Rudy Caseres: 11:19 I know. But yeah, no, definitely. I appreciate it. I appreciate that. Keep the questions coming, okay. It makes my job easier. Okay. Because I didn't prepare for this at all.
Melody Moezzi: 11:27 I have plenty of questions for you.
Rudy Caseres: 11:29 Okay. Um, before we get to that question, and I'll talk to you about mania because I'm bipolar as well, and I was reading your book and I was just blown away by the type of stuff that you did. Cause I was, it was fairly straight forward. Like I didn't want, I wasn't like psychotic or anything like that, but I was a lot of energy. I didn't think that I was a prophet. I didn't like, I wasn't like, I'm the second coming of Christ or anything like that, but i felt like I had it in me that the potential, I've always felt like I was meant for great things and in a way I am doing great things, but I never wanted to just like live in this little bubble and, and be this a shrinking violet. But I've always dealt with um, verbal abuse, bullying. So that was the part that caused me to depression. And for me the mania was a thing that like was the real me escaping and nobody got it. People were trying to box me in. Nobody. People want to label me sick and I would say out loud, "I'm not sick. You're sick, you're sick." And I want to get your take on mania because from reading that, that's very scary. Some of the things you do because you don't even remember a lot of it. Yeah.
Melody Moezzi: 12:34 Yeah. So I was what they would call floridly. I don't know if they still use that, but yeah, I had real psychosis, I had delusions, hallucinations. And that was the first time I only acute manic episode I've ever had. Um, thank God cause I didn't know I had bipolar disorder. I thought I was like so many other people. I was misdiagnosed with unipolar depression and put on medications that actually exacerbating my condition and helped push me into mania. So thank you. Um, I mean I don't want to be down on pharmaceutical companies, but let's be honest, they just want to make money from us and we're like lifetime supporters of that and I'm all for taking your medication. Please don't ask me that. Like I will tell you I take medication and thank God for whoever invented antipsychotics, um, because I'm able to take them just a few times a year and not be hospitalized year round. Uh, but if I didn't have access to that medication, uh, I would be fully disabled all the time. And thankfully I haven't been. So, uh, I am grateful to medication. I am very skeptical of big Pharma in terms of how much did they want to help us or how much they can. I think a lot of lifestyle, um, comes into play as well, just like it does with every illness that people get weird about it. When you talk about mental health and that like, oh, maybe you should change your lifestyle a little. I mean that's what you say to somebody who has, you know, I have high cholesterol, right? They're like exercise, eat better, all of that. Right. That's all good for your mental health too. Yeah. And I feel like when you start talking about those kinds of issues, people get a little nervous and I don't, I feel like whatever works for you, I'm all for that. So,
Rudy Caseres: 14:11 you know, I sometimes think that medication is a stop-gap that there's so much that we can do to really live our best life, but also not feel like we have this disease that necessarily needs to be cured. That we're these pariahs. What do you think that would look like?
Melody Moezzi: 14:26 Hmm. Yeah. So I have a friend, his name is [inaudible]. He has a lab at Duke University. He is doctor. He has his own lab. He's super young in a very smart, and he is working on finding treatments for bipolar that actually integrate, does like microchip in your brain and he puts it in the brain of mice. I forget what he calls an actuator, I think, I don't know, but go look him and learn more about them and he's doing amazing things. And every time I see him I'm like, cut. Have you cured me yet? No, not yet. But uh, they're brilliant people who are working on these things and I am so grateful to them. Uh, I am not somebody who believes that I need a cure and that I need to be cured. I would very much like depression to hey, but wouldn't everybody. I don't, I think whether you have a mental illness or not.
Rudy Caseres: 15:13 I wouldn't want it to go away completley. It's part of the human condition.
Melody Moezzi: 15:14 Yeah. Yeah. So there you go. Right? Like I think you don't recognize or appreciate joy if you haven't experienced sadness. So I think our ability as people with bipolar disorder is to go sort of farther on that spectrum. And that can be a curse. But I also think it can be a gift and it's not something if there were medication that would cure me of this entire condition, whatever it is, um, that we are now calling bipolar disorder or bipolar disorders and God knows what, we'll call it 10 years from now. But, uh, if there were better treatments for it, like I, I'm all for that. Uh, I don't, I don't think there is such a thing as a cure because I see, I also experienced it so much as a spiritual, uh, kind of conditioned to, uh, and I, I know that, uh, that hasn't always been accepted. So the mental health community has very much told me that, you know, I, when I... My first - I had a hypo manic episode and I had a manic episode and during the hypo manic episode I had, uh, and both a manic episode. I hadn't - The only two mystical experiences I've ever had in my life and they were extraordinary. Um, the second one was also ultimately developing a, and I think that that was a valuable experience that the mystical side of it, the spiritual side of it, whatever you want to call it, this understanding that how connected we are, that I got so deeply when I was hypomanic and when I was manic, uh, in a way that, you know, I've, I've pretty much like always believed in God, but I've never been confident of that belief until after my first mystical experience. I was just very, whatever, just a force that unites all of us in some way. I felt that really strongly to the point of what some people would describe like psychedelic experiences (inaudible). Uh, and I've never done any recreational drugs. So yeah. So I think the mental health community being like this is, you can't have a valid mystical experience and sort of the faith community being like, this isn't really an illness. And, uh, plenty of people telling me, you know, sister, like, you just need to pray more. And this is like jinn. This is, or this is like a, you're possessed. Right? Um, we have these, uh, exorcisms that some people can go as well. So, uh, yeah, and a little nervous about this stuff too. But I hope that I've made it sort of clear that I think the faith community and the mental health community need to get together on this and realize that some people very much experienced their mental health conditions as also spiritual conditions. Uh, and that doesn't need to be entirely dismissed. And for me, faith has been a huge part of my, uh, and the mental health community has, in terms of mental health providers have never been supportive of that. They've always seen it more as a delusion apart from one psychiatrist I have now. Uh, and something that needs to be dealt with store. Yeah.
Rudy Caseres: 18:04 Yeah. I mean, I'm not anti psychiatry, but I hate going to the psychiatrist. I mean, I've had good therapists. I don't have one right now, unfortunately. Yeah. But yeah, it's just, I always feel like I'm being talked down to like just be seen as a disease and it's just hard to talk to someone like that. Especially when you only get like 10 20 minutes tops. Yeah. I've had times where I feel like I have to really assert myself and even use big language because then the doctor will be like, "oh, this person actually knows what they're talking about. I can use big boy words with them now." So we've got a long way to go. But for me, I believe in the social model of disability. So for me it's not about being cured. It's obviously we want to feel our best, but I also feel like everyone needs an adversity no matter what it is. And we can have the suffering Olympics, compare our suffering to each other. But I truly believe in accessibility and accommodations. And like you had mentioned, like people get weirded out by mania, they get weirded out by psychosis and even severe depression, suicidality to a point. And I just want that to end and we're, we're both bipolar and we're both going to be manic at some point in the future and for me, personally, I want to get to a point where even if I'm manic, I don't want people to necessarily - I don't want people to box me into a hospital to inject meds into me against my will. I also don't want to be left alone. That's my personal decision.
Melody Moezzi: 19:29 Do you have a health care power of attorney?
Rudy Caseres: 19:31 No.
Melody Moezzi: 19:31 You don't? Do you have, um, they have psychiatric advanced directives -
Rudy Caseres: 19:36 I do know what those are. I do know that even if they're notarized, at least in the state of California, they can just totally be disregarded. I mean, I talked to my wife about it and yeah, and she shares similar views as me, so she's not just going to rush to put the, uh, 5150, 72 hour hold on me, which I really appreciate it. I mean, I couldn't marry someone and be like, "Oh yeah, like I don't get it at all. So I'm just gonna call the police." And I really, really hope that if I'm manic again, which I'm sure will happen again sometime maybe -
Melody Moezzi: 20:07 Are you sure? Acute - you've never been acutely manic, right?
Rudy Caseres: 20:09 Never to the point where like I thought I knew I was God or I tried to like jump out of the building cause I could fly.
Melody Moezzi: 20:14 Right.
Rudy Caseres: 20:15 It's more of...(crosstalk) it's more like -
Melody Moezzi: 20:17 Were you hypo manic? Are you bipolar 2 or bipolar 1?
Rudy Caseres: 20:19 I, you know, I've, I've never been formally diagnosed with either number. Like I think it still says catatonic schizophrenia because I, I've had catatonic episodes where it's completely freeze up.
Melody Moezzi: 20:28 Yeah.
Rudy Caseres: 20:29 And no, it's more, for me it's more about grandiose thinking, thinking I'm the shit basically like this. Like, like not like the second coming of Christ, but thinking like I'm the person who's going on like take the world into a higher level because like I'm just way smarter than everyone. And so that's just me and I can spend the money I want because other money will just appear. But yeah, I mean obviously like I don't want to be a dick to people. I don't want to be like, like the the guy who thinks like he's like a legend in his own mind, but I also want, I want to find meaning in that. I don't want to just erase it. I don't want people to like rush to put me in a hospital. I want to really explore it. Hey, Danielle Glick. Hey, Jennifer. Hey, Jacque. Again, I appreciate the - all of that as well. Um, what does ACES... Oh, advanced care or something?
Melody Moezzi: 21:15 Yeah.
Rudy Caseres: 21:15 Okay.
Melody Moezzi: 21:16 Yes. So ACE is their test for trauma. I think it's the, tell us what it is.
Rudy Caseres: 21:21 Yeah. Um, Jacque works in suicide prevention.
Melody Moezzi: 21:24 (crosstalk) Childhood - adverse childhood experiences assessment.
Rudy Caseres: 21:27 Oh, yes.
Melody Moezzi: 21:29 So people, whatever your ACEs score, I think my score is zero. Like I actually haven't no adverse childhood experiences and yet it's still here. Right?
Rudy Caseres: 21:37 Well, there you go. Cool.
Melody Moezzi: 21:37 But plenty of people there - their ACEs scores are higher. I think it goes from zero to 10. I'm not entirely sure, but maybe, um, Jack-kay? Jackie -
Rudy Caseres: 21:46 Jacque
Melody Moezzi: 21:46 Jacque?
Rudy Caseres: 21:46 Jacque, Jacque
Melody Moezzi: 21:47 Jacque Christmas. I'm not sure.
Rudy Caseres: 21:51 Jacque's a cool person. (Reading) Um, yes.
Melody Moezzi: 21:52 (Reading) Adverse Childhood Effects.
Rudy Caseres: 21:53 Yes, there we go. Um, but you are definitely aces in a different way. Hey Joel, how are you? So you had mentioned the word anosognosia in your book, which is very controversial. Like, I had DJ Jaffe on here a couple of months ago and that was quite the heated debate.
Melody Moezzi: 22:08 I'll have to check that one out.
Rudy Caseres: 22:08 Oh yeah, yeah. Because I mean, yeah, that's, that's, that's like an hour and a half plus like just tour de force. Um, but no, I mean I do recommend checking out. All the episodes are cool. What are you talking about? Um, but yeah, I mean I personally don't think that it's the same thing as what people say it is, such as like a person has a stroke and they don't notice that their arm is completely paralyzed. Um, I mean, one, one thing I like to say is that if that were the case, then why doesn't psychiatric drugs cure anosognosia in other people with other conditions.
Melody Moezzi: 22:42 Um, so I don't think anosognosia can be cured by anybody. I don't think there's any treatment for that. So, but the idea of lack of insight, lacking insight, I think having a big word for it. I don't know how useful that is, but I have definitely reached the point in my, uh, with mania that I lacked insight. I've even reached the point where in depression for sure, where I've lacked insight, I'm a suicide attempt survivors. So, um, yeah, I'm very much at that point where I lacked insight into my own condition and I'm of the, I'm against forced treatment, coerced treatment or what some people like to call it. What is the fancy fun word for it? Um, there is a label that the people who love it give it involuntary treatment. No, it's not even an involuntary, they call it like helpful. It's just like some sort of, yeah, it's like, it's a nice, remind me if you know what that's called. I'm trying to think of it, but I'll, I'll remember right when we're like off live. Um, but yeah, point being, I'm not like, so the Treatment Advocacy Center is a big group that promotes coerced care. And I'm very against that. I do, however, understand that families can have a very difficult time when somebody who has a mental health condition. Uh, and I personally have a psychiatric advanced directive that states what I want to happen. And I actually just moved to Massachusetts and I don't know if it's legal there. Thanks for that reminder to check that out. Do they have PADs in Massachusetts? Someone reply, uh, you know, uh, there's like a pad.org, uh, that I recommend you go to. And if you all don't have psychiatric advanced directive, I recommend it. Um, it's a way of making sure people you do not want or at least trying to make sure that people you do not want, uh, involved in your treatment, uh, are involved in your treatment. So the only bad part of this is I trust my family entirely. Most people do. Um, certain men, like my immediate family, I trusted entirely. Uh, not everyone is the same and not everyone's family has their best interest in mind necessarily. Uh, and that's what I really worry about just as an attorney when you're taking somebody's civil rights away, their freedom. Liberty is really big and I genuinely believe that it's, uh, at a point that some of the legislation around, uh, coerced treatment is straight up unconstitutional, uh, outpatient. Oh, I know what it's called. Something outpatient treatment.
Rudy Caseres: 25:04 Assisted Outpatient Treatment
Melody Moezzi: 25:06 Assisted Outpatient Treatment! AOT, that's what they call it. Thank you very much. I feel really good about remembering this (laughs).
Rudy Caseres: 25:10 No, awesome.
Melody Moezzi: 25:10 Um, yeah, but I'm not a huge fan of that at all. So...
Rudy Caseres: 25:16 And as, as you could tell by the name of the show, No Restraints. Neither am I. Um, Joel Schwartz who's a licensed psychologist, says "10 on the original. I think it's been expanded to 14."
Melody Moezzi: 25:26 Oh, the ACEs. The survey.
Rudy Caseres: 25:29 Yes. So I appreciate that. Like everyone and their mother is like commenting adverse childhood ... Okay. Well we appreciate that.
Melody Moezzi: 25:34 Oh, Hi Kathy. I'm a big Fan, Kathy Flatherty is here and she is amazing. She's a lawyer who also has bipolar um, Harvard Law Grad. Super Smart.
Rudy Caseres: 25:44 Oh, awesome.
Melody Moezzi: 25:44 I wrote about her in a New York Times op-ed I wrote a few years ago.
Rudy Caseres: 25:46 Okay. Yeah. I put pad.org.
Melody Moezzi: 25:51 Oh, thanks!
Rudy Caseres: 25:51 It gave us Phi Alpha Delta (inaudible) -
Melody Moezzi: 25:51 Oh, great. So maybe it's not. Maybe it's PADS.
Rudy Caseres: 25:56 PADS. Okay. We'll, we'll put that up later. Yeah. Um, Kathy says "involuntary outpatient commitment is what we should call it, not assisted outpatient treatment, which is way too nice." I agree. Um, Joelle Marie says "Mass doesn't have to legally honor them. I knew, but are things that I can do?" Um, Kathy Flatherty uh, "advanced directives are a great tool. I should have one but don't. I know they can be overwritten in an emergency and they..." It's like that's the time you would use it!
Melody Moezzi: 26:22 Yeah. So Kathy's I mean a lawyer in the number one, a public interest lawyer as well. And like who I would trust on this information. And uh, she works in Connecticut. I believe. So if y'all are in Connecticut, she is there.
Rudy Caseres: 26:36 Hi Kathy again. "That was still the funniest thing when you wrote about me and friends told me about it."
Melody Moezzi: 26:42 Yeah. When you wake up in the morning and they're like, you're on the New York Times, I feel like it's a fun day. It's never happened to me. Kathy, if you want to write about me, feel free/
Rudy Caseres: 26:51 I once got interviewed by a New York Times reporter because someone I went to the army committed a hate crime, so there's that.
Melody Moezzi: 26:56 Oh, nice. Yeah. And I take that back. I think New York Times Magazine wrote a one sentence review of my last book. That wasn't really a big review, but it was just the statement. There was no like, "I like it or don't like it." They were like "An Iranian American bipolar memoir." I was like "That's what I wrote." (laughs)
Rudy Caseres: 27:14 Hey, that's, that's better than most. Yeah.
Melody Moezzi: 27:15 They got rid of the one sentence review cause I think they realized it doesn't really, you know.
Rudy Caseres: 27:19 Yeah. I mean the book has been out for several years. How do you feel about now?
Melody Moezzi: 27:23 Um, well every book, both of my books and the book I've just written in, in the process of editing now. Um, I am not a fan of when I read them, I want to edit them. Yeah. Uh, and so every book I write, I think a lot of work still needs to be done on it. Um, but if I kept it and didn't publish it and, one, I wouldn't make living, but also I would, it would reach a point that I think there, it can get worse. Uh, so, and I don't, I haven't figured out where that point of diminishing returns to scale actually is, but I know it exists, which is somewhat comforting. And honestly, if I just waited until I was ready to publish something, I would just never publish anything ever. Uh, but there's plenty of things like the way that I wrote about certain things that I would have done differently. Um, or people... Don't ask me what (laughs) but I know you're going to.
Rudy Caseres: 28:15 No, I mean, I never know the next thing I'm gonna say until I say it sometimes. But um... (holds up book) Buy this damn book. Okay. Okay. Thanks. Haldol & Hyacinths. Okay. If you don't have the means, um, if it's not in your library,
Melody Moezzi: 28:30 Your libary should have it
Rudy Caseres: 28:31 Make sure they have it in your library as well. Okay. I appreciate that. And like I said, cool ass book. I need to read this one, too. War on Error.
Melody Moezzi: 28:42 So it's real stories of American Muslims. Uh, I talked to a lot of American Muslims and I ended up writing about just 11 of them and myself. So 12 total. And you're still young enough? I feel like I look the same, but yeah, no, that, um, that first book I wrote while I was in law school before I was diagnosed, um, and yeah, and I was, part of my trouble too with being hospitalized is, and I've said this before, that just my, one of the hospitals that I was at, I had just like maybe a week before I was hospital- I don't know, it was very recently before I was hospitalized. One, I was living in the state of Georgia and I won this Georgia Author of The Year award. Uh, and so I was pretty accomplished and I hadn't graduated law school, passed the Bar. Uh, I have a master's in public health from Emory, which is like one of the top 10 public. It's like right by the CDC, uh, public health schools in the country. So I'm not, you know, completely unaccomplished person. And what ended up happening in the hospital is in my records, and I figured this out when I wrote the book, uh, my medical records, they've written over and over "The patient has delusions that she's an author and a lawyer." And, uh, up until like the end of those records where they crossed out, um, "Patient believes she's an author and a lawyer" and they like cross out "believes" and then quickly, uh, let me out of the hospital because I was threatening to sue them the whole time and like in no uncertain terms. Like I was telling him exactly what I would sue them for, like giving them the torts, um, false imprisonment, intentional infliction of emotional stress. Like it was very specific about what I would be suing him for. So once they realize that I was indeed a lawyer then they let me go. But I think that's a huge problem because what happens is in places like that and what happened to me during my exit interview, somebody, uh, who I have no idea what their qualifications were and I'd only met her this one time, I honestly don't even know if the file that she was holding in front of her was mine. Uh, but she did say my name and I sat down and she said, "You know, you need to lower your expectations for your life." Um, and in like probably the most fragile state of my life, I looked at our, uh, and I credit my parents for this more than anything. Uh, I looked at her and I said, "Girl, raise yours. Raise your expectations because I'm not about to lower mine. Uh, and I could tell she'd never heard anybody say that. And I thought then how many people have sit - sat - in this exact chair? Been told to lower their expectations, complied, and then God knows what, you know, cures for what diseases we don't have because that person thought they were incapable and they weren't. Not only were they not incapable, they were more capable than ordinary people whose minds don't reach the same places. Uh, that, those are the people who have different conditions that I think ends up making our minds quite literally extra-ordinary, uh, means that we, you know, we can see solutions where other people can't see them. And I think that's something to absolutely be celebrated. And society should be taking advantage of that. Right? We should be supported, uh, in terms of people who have mental health conditions and other conditions that make their brains work differently. I also have dyslexia and I, it's weird sometimes when people are like, "Oh, you're a writer or you know, you must read a lot." I do read a lot, but I read a lot. Really, really slowly. I don't like, for example, I almost never read books that are by so and so with so and so, so that are ghost-written. Almost never. Just because I don't really... Like, I really have to be specific about the books. I do read a, so I don't like to read books that aren't written by the people who were supposed to have written them. Sorry.
Rudy Caseres: 32:11 If I wrote a book, even if it was terrible, would you still finish it?
Melody Moezzi: 32:14 Absolutely.
Rudy Caseres: 32:17 There's, there's one customer there. Cool. Joel says, "Yes. Neurodiversity equals creativity. Chrissie Hodges says, "hello. Yay. She's such a bad ass." I think you and Chrissie are both, uh, um, A2A ambassadors.
Melody Moezzi: 32:31 Oh, cool. For bipolar as well? Or -
Rudy Caseres: 32:33 No, she's OCD.
Melody Moezzi: 32:34 OCD? Cool.
Rudy Caseres: 32:35 Yeah. Awesome person. I'm gonna see her in April at the American Association of Suicidology conference. So shout out to that. I'm actually on a panel for the first time. They actually trusted me to be on a panel. Yes.
Melody Moezzi: 32:49 (laughs) They are lucky to have you.
Rudy Caseres: 32:50 I appreciate that. I mean, I just found out that I'm going to be a co-presenting with my wife at the NAMI California conference as well.
Melody Moezzi: 32:56 Oh, fun. That's great.
Rudy Caseres: 32:57 I know. And then I get to do a keynote in June at the um, uh, Shedding Light on Mental Health conference in West Virginia.
Melody Moezzi: 33:04 Oh, fun. Have you been to West Virginia?
Rudy Caseres: 33:06 No, I haven't. I've been to Virginia at the edge, but I've never been to West Virginia.
Melody Moezzi: 33:10 I recommend it. I like it. I'm a fan.
Rudy Caseres: 33:12 Okay. I will have some time to check it out.
Melody Moezzi: 33:15 I grew up in Ohio so we know West Virginia.
Rudy Caseres: 33:16 Yes. Shout out to Ohio. Shout out to Carrie.
Melody Moezzi: 33:20 Dayton!
Rudy Caseres: 33:20 I appreciate you as well. Cool.
Melody Moezzi: 33:22 Hi, Carrie! How are you? That's one of my former students.
Rudy Caseres: 33:24 Oh, awesome.
New Speaker: 33:25 And they started a literary -, so I taught at UNC, UNC Wilmington, uh, University of North Carolina at Wilmington, by the beach, which is probably why (inaudible) but I taught there for a year last year. Uh, and Carrie was one of my students and amazing and has since started a literary magazine called Semicolon that hasn't started I think five out of six people who started it were my former students, so I'm incredibly proud of them. Um, I might be wrong on that number, but you can correct me if I'm wrong. Uh, and I'm so proud of them and if you all are writers and interested in contributing work to Semicolon, I highly recommend that you do. And if you don't, you're not writers, I recommend that you read it.
Rudy Caseres: 34:01 Yeah. And don't, and don't be shy. Post that link to any of your work, Carrie. And Kathy again, "Come to ... come to" What is this Connecticut? "In the fall for the NARPA conference? NARPA.org." Um, Paige says, "West Virginia. Tell me where." Um, it's somewhere in Greater Wheeling.
Melody Moezzi: 34:17 Wheeling? Yeah, it's always Wheeling (laughs). Or Morgantown! Uh, University of West Virginia? I love Morgantown. I had the best tortilla chips in my life in Morgantown, West Virginia.
Rudy Caseres: 34:28 Oh, I know a couple of places in SoCal that can give you a run for the money.
Melody Moezzi: 34:31 Yeah. You think?
Rudy Caseres: 34:32 Oh, yeah. Oh, yeah.
Melody Moezzi: 34:32 Let me know.
Rudy Caseres: 34:33 Okay, cool. So what do you, I mean you, you said you hate speaking but you've done keynotes. You got to speak at the DBSA national conference -
Melody Moezzi: 34:39 Did I say I hate speaking? I hate traveling for speaking. I love speaking. I love the part of it where I get to talk, but the part of traveling -
Rudy Caseres: 34:45 I know. I tend to only get work out of Los Angeles. So -
Melody Moezzi: 34:49 Tell me about it. It's so funny too, after you leave a place, like after I left Atlanta, like suddenly I became so popular in Atlanta. And I'm hmm, it would have been nice when I was there (laughs) -
Rudy Caseres: 34:55 I mean, I recommend that to anyone. Do things outside of your inner circle and your, um, outside of your home town and people want you to come back. Don't come back home until people like, like need you back home. (laughs) Until they demand it. Okay? Make yourself famous in the real world. Uh, Tina says, "Hi Melody. Love you." If all you want to do is show some love to Melody. Ah, don't worry about me. I'm just some guy. This is No Restraints with Rudy Caseres, uh,
Melody Moezzi: 35:23 Oh, look! (points at screen) The semicolon lit. Sorry to interrupt you.
Rudy Caseres: 35:24 Oh, awesome.
Melody Moezzi: 35:26 Uh, the, uh, Carrie just posted the link to semicolonlit.org.
Rudy Caseres: 35:31 I will check that out. Is that because of the semicolon for suicide or -
Melody Moezzi: 35:34 Yes.
Rudy Caseres: 35:34 Okay, cool.
Melody Moezzi: 35:34 Yeah, suicide survivors.
Rudy Caseres: 35:36 You know, I actually got to, my first big speaking job was with Amy Bluel from Project Semicolon.
Melody Moezzi: 35:40 Oh, yeah! Cool.
Rudy Caseres: 35:40 So that was, that was an interesting experience. We spoke in a high school at Quincy, Illinois. Which is like -
Melody Moezzi: 35:49 Hmm, Is it outside of Chicago?
Rudy Caseres: 35:49 Yeah, it's the kind of, it's kind of town where you can walk from one end to the other in like an hour. Yeah. Yeah. It was, it was a very moving experience. So rest in peace to Amy, you are missed. Okay. So before I forget, back to back to forced treatment. You did a Facebook Live for The Mighty, which is I believe was your last one?
Melody Moezzi: 36:06 Yeah, yeah. It was my only one i had ever done. (laughs)
Rudy Caseres: 36:07 You mentioned, yeah, I think, I think I was, I think I was asking you about this, about restraints because obviously that's my whole thing. I've been placed in four point restraints. I've been forcibly catheterized - the whole nine yards. You said that you didn't support the leather restraints - the four point restraints, but you did chemical restraints.
Melody Moezzi: 36:22 Yeah. So chemical restraints. Uh, yeah. So I think that - because I was given haldol, uh, when I was in the hospital and uh, thank God I was given it when I was given it because I was, like I said, floridly psychotic and I had no insight. No way would I have had insight, uh, without that, that said, I understand everyone's situation is different and I'm not going to pretend to project mine on everyone else's. Uh, but I do know that for me, access to antipsychotics is really important. That said, the last time I was given forcibly given antipsychotics was the last time that I was ever forced ligament anything, uh, because once I got them, I knew what my condition was. So I don't anticipate, I anticipate I'll experience hypomania. I don't anticipate honestly experiencing acute mania again, because I know what the lead up to that looks like. Uh, and for me, this may sound weird, but I'm incredibly lucky. Uh, initially I thought I was incredibly unlucky for this reason, but I have, uh, visual hallucinations, which are actually somewhat uncommon. Uh, but I do have visual hallucinations and I had them early on. Uh, and I don't know if it's, I also have migraine with aura. I don't know if there's any connection with that, but in any case, uh, because of that, that's like a really, and I know that they're hallucinations at that time. Right. So really quickly, I take my medication and it's a very clear sign. Uh, and I have an amazing husband who also can tell me, uh, if I, you know, I'm talking really fast and people can't follow what I'm saying, that kind of thing. Uh, but for me, like a big incentive to continue taking my medication is the fact that I have other people who count on me. Uh, and, uh, I know that if I were manic again. I would make their lives miserable because that was very much like you, I thought I had the answers to everything. Um, like, like you said, I thought I was a profit. Uh, that's it. I will say, I think everybody is a profit. I think everybody has a message from God for you. I know that sounds like super hippie woo-woo but I genuinely believe everyone has a message, has a purpose. Uh, and in whether that message is just like, don't do what I'm doing or, you know, it can be anything. Uh, I have, there have been people placed into my life by what I am. So confident had to have been divine intervention. Yeah. So -
Rudy Caseres: 38:38 Now do you think your mania has a purpose?
Melody Moezzi: 38:40 Absolutely. Yeah. Yeah. I think, well, the mystical experiences I had with the manic episode and the hypomanic episodes, uh, were extraordinary and I wouldn't trade them in for anything. I would prefer that the second one didn't get to the point of acute mania. Uh, but my next book is about, um, it's called "The Rumi Prescription." That's coming out at spring 2020, uh, from another imprint of Penguin Random House and God willing, and we're in the process of editing that right now. Uh, and that book was very much inspired by my mystical experiences. So Rumi is an ancient, actually medieval, technically a Sufi poet. A person, Sufi poet. And He, uh, his poetry is pretty extraordinary and it's my own culture, my own history, which I was unfortunately never taught about in school and never taught that, you know, you come from a great it home. I was definitely taught this. Uh, but I never read an Iranian author for example, until I chose a, and I read Firoozeh Dumas' "Funny in Farsi" which I absolutely loved. And reading that for me was groundbreaking because I was able to see myself on the page in a way that I had never seen myself. And I was like, I can do this. Somebody will read this, you know, somebody will be interested in my experience, which before that I was like, nobody's never want to publish it. No one's ever going to be interested. And even with my first book about young Muslim Americans had an agent who was trying to sell that book and she, uh, was the wrong agent for me. And I now have an amazing literary agent who I'm very happy with, who has a lot of other minority clients. And uh, that agent came back to me that more than one of the publishing houses that she was trying to, big publishing houses that she was trying to sell the book to had said, "This is a great book about young Muslim Americans, but we need you to interview a terrorist and get back to us. And then we would be interested in purchasing it." If there was an interview with a terrorist, then it, cause their assumption was if you're going to interview a dozen people, one of them has to be a terrorist if they're all Muslim, which is not true. Uh, and honestly, the whole point is a book with to say that we're not fucking terrorists. Right? So, uh, I was horrified when she came back with me thinking that I would even do that, given that was the whole point of the book. And then I said, "Of course, no way am I going to do that." And I ended up publishing it with a small academic press, uh, and being proud of the product that came out, uh, but also making no money from it whatsoever. So I wasn't able to make a living as a writer until I published Haldol & Hyacinths. Uh, so I'm really grateful to the agent I have now who recognizes that our stories, whether they be stories of minorities, whether it's because you have a mental health condition or because you're a Muslim or Middle Eastern or black or Latinx or whatever, your stories are relatable. Your stories are relatable. Do not let anybody ever tell you your stories are not fucking relatable. They are relatable. Um, and I'm so sick of that word. I'm so sorry. It's code. It's code for "Your story is not white enough for me." Uh, and I was so blessed to find somebody who was willing to champion my work in a way that I had never experienced before having this agent. So you gotta find the right people to work with, uh, and to work for you in the world, uh, and not compromise your own vision as an artist. And as a human being. So...
Rudy Caseres: 42:01 Yeah. And I mean that's the, that's the reason why your book stands out so much. I mean like, uh, An Unquiet Mind by Kay Redfield Jamison. That's like for better or worse -
Melody Moezzi: 42:11 I love! I did love -
Rudy Caseres: 42:11 That's the gold standard. Like that's what people consider, like The Bipolar Memoir. So like you got to really stand out, you've got to do something different. Otherwise you're just going to be compared to that book. So I'm, I'm glad that your book is out there and a lot of other cool people as well. I mean there's -
Melody Moezzi: 42:26 Have you interviewed Elyn Saks yet?
Rudy Caseres: 42:28 No, I actually saw her on Monday.
Melody Moezzi: 42:30 I love her book.
Rudy Caseres: 42:31 Yeah. I went to -
Melody Moezzi: 42:33 I love -I'm such a big fan of hers.
Rudy Caseres: 42:33 And Ellen Forney, I know you have interviewed her.
Rudy Caseres: 42:37 Yes. She's awesome and you interviewed her for BP Magazine
Melody Moezzi: 42:40 That's my favorite bipolar memoir is, um, I think if you put Marbles and Rock Steady together that's my favorite bipolar memoir. If y'all are interested.
Rudy Caseres: 42:46 She's awesome. And that was, uh, that was, that was hard to get on. Yeah. And you as well, like I've been trying to get you on since like last fall. Well first I had to like work up the courage. I had to be doing this for long enough so I'm not just some random guy, so I appreciate that. Um, yeah. Elyn Saks. Cool person.
Melody Moezzi: 43:02 Yeah. You should have her on. I think...
Rudy Caseres: 43:05 That's going to be hard. Yeah.
Melody Moezzi: 43:07 I tried to invite her when I was at law school at Emory, I tried to invite her to come speak there. Uh, and I was really impressed with her. Um, just like self awareness of it and she was just like, "I don't know if I can be traveling right now, but I'll let you know."
Rudy Caseres: 43:18 Yeah, I would, I would want to do it in person. She lives in LA. She works at USC.
Melody Moezzi: 43:23 Yeah, I know. She lives real close to you. (laughs) That's why I asked.
Rudy Caseres: 43:23 Like if you live in Southern California, like even if I have to go to San Diego, like we're, we're going to do it in person. Okay. Yeah. There's no, there's no way around it because I much appreciate doing this. Yeah, um, then doing it over the internet. Um, no disrespect to the people who I've done interviews with across the Internet. Those have been amazing as well. But there's something to be said for talking to someone like this. You bump shoulders.
Melody Moezzi: 43:44 Yeah. (Rudy pretends to be knocked over. Melody laughs.) Really? I'm that strong.
Rudy Caseres: 43:48 I mean, you're probably stronger than me. I'm, I'm so weak. Like I look at these arms like that's... Whatever.
Melody Moezzi: 43:54 But your spiritual and your emotional fortitude is very impressive. I'll say that. That's what really counts.
Rudy Caseres: 44:00 Well thank you very much. Okay. We could probably talk for like nine hours straight, but I want to make sure that we start bringing it home because like Melody and I we're probably gonna hang out for awhile anyway. So we have to end the stream and start, (laughs) start the real fun, I guess. Uh, but I'm gonna let you have the final words. If you want to give any shout outs. Uh, if you're, uh, if, uh, your husband's watching -
Melody Moezzi: 44:25 (laughs) He should be reading! He should be studying.
Rudy Caseres: 44:25 Uh, we have, we have Jean Lenard.
Melody Moezzi: 44:28 Oh, that's my mother-in-law.
Rudy Caseres: 44:29 Oh, awesome.
Melody Moezzi: 44:30 (Waves) Hi, Jean!
Rudy Caseres: 44:30 (Reading) "Just want to hi. Hope to see you soon."
Melody Moezzi: 44:32 Oh, likewise. I think I will be seeing you soon. Actually.
Rudy Caseres: 44:34 She's probably talking to you.
Melody Moezzi: 44:35 (laughs) Yeah. Inshallah. Hopefully in April I'll be able to see you.
Rudy Caseres: 44:40 Awesome. So the floor is yours. The couch is yours.
Melody Moezzi: 44:44 The couch is mine!
Rudy Caseres: 44:44 Anything you want to say? Soapbox time! Promote that Twitter account.
Melody Moezzi: 44:50 Um, yes. So I'm on Twitter and Facebook and Instagram. I just started Instagram. If anybody wants to give me a full Instagram tutorial and you live in Boston, uh, I would love that because I don't fully understand it yet. I don't know how to do Stories. (Rudy holds up Melody's books) You are so funny. Put those down. Um, please buy my books. Uh, but more importantly, like I was saying earlier, uh, if you have a mind that works differently, uh, and I say this a lot, but it's because I really, really mean it and it's because I think it's so important because we're so often told that we can't do things. Um, there is something hugely valuable about having a brain that works differently and don't ever let anybody tell you that there isn't. Um, there's something valuable about having an experience that isn't the norm. Uh, that isn't, uh, the white male, heterosexual, cisgender, able bodied. My God, there's so many other ways to say this. Um, but, uh, there's something extraordinary about that experience, right? And I think we deserve to have our stories told and that there is power in sharing your story. Uh, and that more of us need to do it without shame. Uh, and that's not easy, but the more of us that start doing that, the easier it will be for other people after us. So my dream is that there is another Iranian Muslim writer out there. Iranian, Bahai, Zorastrian, whatever. Like there's another author who's like hh, you know who actually looks, oh there is actually a Muslim mental health memoir. Cause they told me when I published that book, it was the first mental - muslim mental health memoir, uh, to be published. Which ... I don't know if that's true because... Also you only speak English (laughs). How do you know it's been published in other languages? But whatever they promoted it as the first Muslim mental health memoir. Oh. Which is great, but I don't want it to be the last muslim mental health memoir (laughs). So I am really, I strongly encourage people who are from different backgrounds to go ahead and do it, even though, and I, and I would've said like, if there were already a Muslim mental health memoir, I might not have written my book, but I don't want you to not write that book if you are Muslim, if you are Iranian. Like if you are from that background, we need more representation, not less. Uh, and your story is different than mine, so please tell it and please know that there are people who want to listen to it, uh, and can learn from it. So, uh, I think that's my final message. Don't be dissuaded. Don't be disheartened.
Rudy Caseres: 47:20 Before I forget, I need you to sign me a copy.
Melody Moezzi: 47:22 Oh, yeah yeah. Happily.
Rudy Caseres: 47:26 And just feel free to write anything. Don't even tell me what you're writing. I will read it.
Melody Moezzi: 47:30 Oh my God. Okay.
Rudy Caseres: 47:32 I appreciate that Melody. Letting me come to your layer. Um, I, I broke my rear view mirror coming here.
Melody Moezzi: 47:39 Oh, I'm sorry.
Rudy Caseres: 47:41 That's, that's, well, that's not your fault. So... That's me like not knowing what I'm doing with a car. (Reading) Carrie says, "Becca and I may visit Boston soon. We can show you-
Melody Moezzi: 47:50 Really?!
Rudy Caseres: 47:50 They'll show you Instagram.
Melody Moezzi: 47:51 Yeah, yeah. When you come to the Boston and you can stay with us and come show me how to do this. All right. Uh, we're in Cambridge, technically. Yes. Yes. (Signs book) And solidarity. Signed!
Rudy Caseres: 48:09 This reminds me I need a guest for next Wednesday.
Melody Moezzi: 48:12 Oh, do you? (Rudy laughs) I have lots - Have you interview interviewed Jessica Gimeno yet?
Rudy Caseres: 48:15 Uh, she, she's, she's a friend. I, I, it's, it's hard to, it's hard to get her on, but she's an awesome person. I've been featured on her website. (Reads signed book copy) "To Rudy with hope, love, respect, solidarity." Thank you so much. I appreciate that. Thank you. Until next time.
Melody Moezzi: 48:34 Yeah.
Rudy Caseres: 48:35 You've been watching No Restraints with Rudy Caseres. My guest this week was an Melody Moezzi. (To viewers) I appreciate all of you. If you're watching this later on the day, later on the week, later on the month, if you're watching this on norestraints.net - where you can see all past episodes- I appreciate you as well. Thank you everyone again. I'll see you next Wednesday. (Pauses) Because it's for your own good. Now, let me end the livestream. Um, how awkward that looks. (Sings) Dododo do, do No Restraints, No Restraints, blah, blah, blah, blah. Okay.
This week on No Restraints with Rudy Caseres my guest is Eleni Gogos. Eleni is a 4th year student at Rochester Institute of Technology and is studying to become a Psychiatric Nurse Practitioner. After struggling with her mental health, Eleni started volunteering for the National Alliance on Mental Illness (NAMI) and became an “Ending the Silence” presenter to share her story with others. This past June, she received the 2018 National Young Leader Award at the NAMI Convention for “outstanding work to ensure that young people living with mental illness live full lives in their communities”. She serves on the Board of Directors for NAMI Rochester in New York, being the youngest to be nominated and elected at 20 years old. Eleni, now 22, is also involved with legislative advocacy and suicide prevention, and has spoken at many events, panels, radio shows and more. Eleni was the youngest guest I've had on No Restraints so far. At 31, I'm glad I didn't come off (much) as an old crufter.
You can learn more about Eleni Gogos at egogos.com.
See you again next week for an all-new No Restraints with Rudy Caseres. Wednesdays 12pm PT/3pm ET.. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
Rudy: 00:01 Hey everyone, welcome to a brand new episode of No Restraints with Rudy Caseres, I'm Rudy Caseres, duh. It's great to be back home in my apartment and I have a guest on Eleni Gogos. Eleni Gogos, I appreciate you coming on because this is the first time we've ever met virtually and that is amazing. And if you're watching this live, show some support for Eleni because like I said, this is her first Facebook live interview and she deserves some love and appreciation and let us know where you're from. If you know Eleni, if you're in the NAMI Rochester family, let us know that you're here and it's glad to be back. Like I said, past few weeks I've been out and about doing on location Facebook Lives. Uh, last week I wasn't able to do one because of the Great Facebook Outage of 2019. So sorry about that. I got to do a Facebook Live for The Mighty that's even no longer even there, but that's totally fine. Without further adieu, tell the whole world the whole No Restraints universe... Who is Eleni Gogos?
Eleni: 01:15 All right. Uh, I'm Eleni Gogos. I am a fourth year student at Rochester Institute of Technology. Uh, that's in Rochester, New York. I am studying to become a psychiatric nurse practitioner. That's my end goal. And last a year I was awarded the NAMI National Young Leader Award, which is kind of my, my best thing that I've kind of accomplished so far, which really means a lot to me. And so far, um, the most thing that I enjoyed doing and sitting on the board of directors for NAMI, Rochester. And that's been, um, kind of a very, I think integral part of the youth moving forward. I'm having board members that are youth, so I think that's very important. So that's, that's what I've been focusing on.
Rudy: 02:10 Yeah. You know, I actually discovered you because I was nominated for that same youth award and I was trying to find out if they had announced it because I was like really, really thought I got, I had this on lockdown, no one could touch me. And I just happened to be searching through it on Facebook and I saw something about you and I was like, "who is this person that's stole my award?"
Eleni: 02:37 (Laughs) That's really, that's really funny.
Rudy: 02:38 Yeah. I actually, I actually did go to the NAMI national convention just for one day just to snoop around. I didn't get to meet you. So it's glad to finally see you and get the chat for a while.
Eleni: 02:50 Yeah, that's really awesome. I know . it was really interesting to me all the other people who got different sorts of awards and to see the variety of awards. But it's interesting to see all the youth. I wish there was more youth presence there. Um, but I know it's growing slowly, so that's kind of what I've been focusing on as the youth presence with, uh...
Rudy: 03:15 Yeah. I've been to the NAMI national convention three years in a row. I won't be able to go this year. I've been to the state conference for two or three of them as well. And every time I go, it's just, I can count the number of young people under 30 on
Eleni: 03:31 (holds up left hand) One hand (laughs)
Rudy: 03:32 Maybe it's maybe one hand
Eleni: 03:35 Me as well. Yes. (laughs)
Rudy: 03:37 Yeah. I mean, I, I'm, I'm surprised people aren't there pinching my cheeks and patting me on the head. So how are you, how are you going to change that?
Eleni: 03:49 Well, we have tried to, I know NAMI On Campus has been a big thing that we have been trying to kind of raise the bar, but um, I've been trying to do this for two years now, at least in my current campus. Um, but it has been on hold. Um, NAMI national has placed a hold on the process, so that's kind of left us with a, a little bump in the road. So whatever we can do kind of outside of that realm of college students, uh, pretty much anything else we can do to get them to get involved with these state conferences or just any events in general. Um, come to the walks. And make, you know, college teams for the walks, things like that. Um, to get them engaged because we don't have a platform for, you know, a campus affiliation. Um, things like that. It's slow, it's very slow and very limited in numbers. But I would really like to see more engagement because I really am one of the many few people that I see there. And I'd really like it to grow. Um, cause I think it's really beneficial. That's how I kind of got involved with all of this. So I think it would, it would skyrocket.
Rudy: 05:09 Yeah. NAMI is pretty much known and it started out this way as a support group and resource group for parents. Yeah. And it's very much that today. I mean you got the NAMI Family to Family, they have those like every single week of the year, at least where I am at in Los Angeles and Peer to Peer is just kind of just there and it's just, it's, it's kind of sad. I mean because you have peers on the national board. And on my state board as well, but it seems often that we're just the token member and we're just really not treated seriously. And that's why you have other groups that spread out like Mental Health America and even more radical groups and recovery groups, groups that they don't even identify with the mental health movement because they feel so alienated by it. And I can totally understand that. So if someone comes up to you and says, you know what, screw NAMI, like they don't represent me. What do you as a peer who's on a state board and who's got to like fly the flag proudly, what do you say to them?
Eleni: 06:12 Right. I've actually had this conversation before and it's, it's on my mind, um, that, you know, I'm not me at least NAMI Rochester was founded unlike these, we call them "NAMI Mommies," the familes. So we obviously don't want to discredit them, or, you know, for their work and their time and efforts. But at the same time, you know, most of, at least my Rochester Board is compiled of family members and other professionals and things like that. And here I am this very, very young person who is total lived experience. And that's about it. I'm like the only person pretty much. And to me, I think that's very essential. You know, I came in and I'm, I'm saying like, there's a piece missing here. I understand family is a very essential, but you're missing an, a very important piece that we try to address is the, you're, you're relating to someone with that lived experience and I think that person needs to be involved, you know, um, that's kind of how I started connecting to people with reaching out to my story and people were disclosing to me and you know, asking for an many resources because I was a relatable here. So I think that's the piece that was missing. And over the summer I was approached by NAMI New York State. I was already on the NAMI Rochester Board. NAMI New York State approached me for a state board application. So that was another step in the road. Um, because again, you know, they kind of saw what NAMI Rochester was doing with, you know, the youth and the peer, um, lived experience and they thought, you know, that's going on the right direction. Um, and they kind of know we're looking to follow that. Um, I was away in Europe so I couldn't complete the application in time. Nonetheless, but I did think that was a really good idea. So I think it could be kind of like a chain reaction for other affiliates. Um, and state affiliates of NAMI if they keep on kind of doing the same thing because it's a new thing, you know, not a lot of affiliates are doing that right now. Um, but I think it's essential to have that cause it's kind of what part of our mission, you know?
Rudy: 08:33 Yeah. Me Personally, I don't think I can be on a board. I just don't like getting involved with the politics. I like to just go out there, do my own thing. I partner with organizations, but not necessarily having to be an apologist or having to fly any one flag. That's just me. Um, let's get to comments. Let's see, Joelle Marie says, "how did the family members you work with feel about the term "NAMImommy? [Which is a term I'm very familiar with, by the way. haha.]" And feel free anyone watching this to ask questions, even if it's not live. I totally get it. People got things to do during the day. I see you people in the, in the (inaudible) who are just watching. I call them "lurkers." Uh, I see Natasha as well. Natasha West. Big shout out to you, former guest on No Restraints with Rudy Caseres. This is I believe episode 38 if you count the two bonus episodes with Gabe Howard and Zima Creason. Answer that (laughs). Let's put it back up just so it's been so long. Family members feel about the term "NAMI Mommy."
Eleni: 09:38 Okay. Yeah. Um, it's not definitely like a term that we use quite often. It's just kind of a slang, you know, jokingly term that we use for the people that initially, you know, built the foundation of the organization back then. Um, cause I know sometimes once we introduced some, when we introduce someone who is young and who is a peer and wants to bring these new ideas to the table, um, the other people who have like founded these, um, ideas who are, you know, um, family members or I guess as you could say as they would say, NAMI Mommies might get a little offended because they feel as if their work has been almost, I dunno, discredited or not respected. Or I've had this conversation with other board members and to me I kind of, you know, try to keep it like respectful as if, no, I'm not discrediting and like all the work you've done to grow this organization, but you know, we are trying to bring in change from youth and lived experience as well. So, um, I don't know exactly how they would feel about that term, but in particular, but I think that, um, those particular grassroots people have family, um, definitely have some sort of.. umm I don't know if I would call it a bias, but, um ... Definitely feel a different sort of way towards the new peers youth kind of jumping in, I believe. At least that's how I felt initially when I joined the board. Yeah.
Rudy: 11:30 Right. And before my next question, I want to make sure to give a shout out to Deanna Ruston who is coming from Canada. "You are studying to become a Psychiatric Nurse Practitioner." Thank you for paying attention to the caption. "As your, as your goal, what is your planned educational pathway to get there?"
Eleni: 11:48 Well, interesting question. Um, so it took me a long way to get to that point and figure that out. As many of us have stumbled in our mental health areas to get there. Um, so right now I'm finishing my bachelor's in psychology and then I will be doing hopefully a 12 month fast track program to get my RN, uh, hopefully at the University of Rochester and then followed by a, uh, a psychiatric nurse practitioner program. I'll start at the University of Rochester hoping to open up my own practice.
Rudy: 12:29 Now you mentioned your lived experience and some people might be watching this thinking like, "oh, everyone's got lived experience. What makes you so special now?" As comfortable as you are? Um, would you mind sharing that?
Eleni: 12:41 Yeah, of course. This is something that I quite often share very publicly, so it's, to me it's really not anything much special. Um, my lived experience is, um, the variety of things. I guess in a nutshell, I would say to keep it short. Um, I struggle with bipolar two disorder. Um, I have been through, you know, various treatments, various medications, very, very low points, very, very high points, a lot of turmoil, struggles, emotional rollercoasters. Um, anything that I'm sure someone with bipolar could very much so relate to, um, that kind of twist and turn, um, that could bring turmoil to myself, family members, friends, loved ones, um, things like that. Um, so it's kind of the lived experience that I would, um, say. I've also lost, um, three people to suicide, uh, quite recently. So that's also something that I would consider close to me regarding mental health. Um, that would be it in a nutshell. You know, keeping it short.
Rudy: 14:02 Now say you were just to wake up tomorrow and have a manic episode, what would that look like? How would you react to that?
Eleni: 14:09 Uh (laughs) yeah, I, uh, sometimes when I, uh, I'm doing these presentations for, um, the kids, the youth, uh, with NAMI in schools, I try to explain, you know, what a manic episode would look like, but in lighter terms, you know, sometimes I tried to make it funny like laughable, you know, so they kind of understand, but it's not too serious. And, you know, I'll tell them about the time where like, I would rearrange my basement or like attic at like three in the morning and I'm like, yeah, this is what I did. Or, um, just like the idea of like that instant, um, that instant need. If the instant gratification I'm like, needs to be done now, there's no other way, um, at least that's how it would be for me. Um, excessive drinking, definitely for me, very excessive spending or you get them to a lot of trouble with that. Credit cards are not good for me. (Laughs) uh, let's see what else? Um, very, uh... Before psychology I used to be a design student. Um, so I, I tend to be very on the creative spectrum. Um, I do a lot of things at once, so I would just never ever, ever sleep. And I would just have scribbles like everywhere and papers all over the room. And it was just very overwhelming and I would have maybe like six different projects going on at once and I would never finish them, but I would just, I'd wake up one one day with this amazing, brilliant idea. I was like, this is going to save the world. And I would start writing and writing and then I would get depressed and I wouldn't finish it. And then I'd get more depressed because I didn't finish it. And it would just, you know, kind of cycle through back again and again and again. So that's kind of how would explain to people and the easiest terms.
Rudy: 16:22 Yeah. Yeah. And I'm bipolar too. So. So a lot of what you say I can relate to, I haven't had a manic episode in over two years now. As for you, do you fear being manic again or do you think you have this, you think you could take it on?
Eleni: 16:39 That's a good question. I like that question. Well, I don't, I don't fear it. Um, I don't think that obviously causes me a lot of turmoil and distress, but I don't, I haven't seen myself, um, gone to such an extreme that it has been so completely like terrible that I have, you know, like landed myself in jail, you know, so I'm like, I'm not fearing it, but I, I'm, I feel like I might be able to handle it, but I want to be a stable level, you know, so I'm not trying to put that fear in myself. I'm trying to, you know, take it one day at a time and, you know, keep going with my treatment and not try not to be fearful of what's to come and just take it one day at a time and... yes.
Rudy: 17:41 Yeah. I mean, I deal with mostly depression and anxiety and every now and then I wish like, "Oh, if I could just have one day of hypomania where I'm just like -
Eleni: 17:51 (Laughs) I have thought that. Oh yes. (Crosstalk) Especially, yeah, in the midst of the depression, you do kind of, I do feel, I feel guilty sometimes for thinking, you know, you know, if only I had some yypomania, you know, this would really be a lot better. But -
Rudy: 18:07 Yeah, I do think that even hypomania can be managed. I mean, if you're not hurting anyone, if you are hyper productive and you're creative and you just got a lot of positive energy going on, you feel euphoria. I don't think that's necessarily a bad thing. As long as it's not negatively affecting others. I know other people, even if they're not being hurt, they can still be weirded out by that and think it's like, "oh, you're sick. You need to be locked up, blah, blah, blah." So I hope in the future, less and less people will not be so afraid or weirded out by people who are hypomanic, who are doing their best to live their best life.
Eleni: 18:47 Oh yeah. And that's why I was misdiagnosed. I did not see a problem with hypomania. I didn't know what it was. I thought I was just like being so productive and I was doing so well, so I totally missed that whole part of it. Um, and that's kind of where the problems came in with wrong treatment, wrong medication, you know, things like that. Um, so that's kind of where I went wrong there.
Rudy: 19:16 Yeah. Joelle Marie says "At some point it can get exhausting." That's why it's good that we have like a one day mania.
Eleni: 19:22 I wrote that actually in a paper I wrote about um, bipolar highs and lows. And I wrote about how great it was for productivity. But my last point was that I can get, you know, it can be a burnout after all, at the end and it can get exhausting and that's where it can be problematic.
Rudy: 19:40 Yeah. Like we all want to be hypomanic until we're hypomanic.
Eleni: 19:43 Yes, yes, yes.
Rudy: 19:47 So Nurse Practitioner, Psychiatric Nurse, like I - some of my best experiences have been with psychiatric nurses. I've had almost all bad experiences with psychiatrists. And even therapists, like I had to -
Eleni: 19:59 I've heard this, I'm surprised because I, I've only had experiences with nurse practitioners. I've just started seeing a psychiatrist now for the first time and I'm just skeptical. (Laughs)
Rudy: 20:13 Yeah. I mean, I (crosstalk) I had one nurse who was like, basically he's my therapist. I think he actually got in trouble because we would be like speaking for like an hour and all he had to do was give me a shot. (Laughs) But yeah. And it's, it's funny how that works out. Like was that your first goal of being a nurse practitioner? Did you think about becoming a psych psychiatrist or a therapist or anything else?
Eleni: 20:37 Um, I wasn't looking to be a therapist. I definitely, I love the biological aspect of it. Um, my tracks in psychology are, um, bio and clinical psychology, so I love that whole realm. I love pharmacology. Um, I love how the brain works. Um, so I definitely was geared towards that way. But between, you know, nurse practitioner and psychiatry, I definitely felt more compelled towards nurse practitioner. I know there's a need for them and I definitely also would be less schooling and less loans. That would be a plus side, but I just, I feel more compelled. But I've had better experiences with nurse practitioners and I feel like that's the right thing for me.
Rudy: 21:31 Yeah. My main question that I wanted to ask you, we talk about the youth. The Youth Revolution. And like changing the world. But say, say, there was a NAMI board that was all young people. What would that look like? What would you actually want to accomplish?
Eleni: 21:48 Hmm. That's a great question.
Rudy: 21:51 So two good questions in one interview, that's all I ask for.
Eleni: 21:56 Oh, let's see. What would I want to accomplish? What, are you talking like nationally. Are you talking like per affiliate?
Rudy: 22:07 I would, I would say nationally. Let's, let's say like -
Eleni: 22:11 Wow!
Rudy: 22:12 All NAMI boards were just taken over by youth, people with lived experience and you all band together in saying, "We're going to change the world for the better." What does that look like?
Eleni: 22:23 Okay. All right. Um, well, anytime I talked to really anybody who has struggled the first thing they tell me, it's the one thing that helps them is hearing from someone. Um, and it's usually the youth. Uh... At least I know when I do the presentations, I always get the evaluation forms back and I go through them and I read them and you know, I see what they have to say. And they're all like, we don't care about the slideshows. We don't care about the presentation. We don't care about the lady who spoke up there. You know, we don't care about this. We care about the woman who sat up there and like gave us her real and raw experience. Like she went through chronologically what happened in her life and she told us what happened to her, how she got through it, her recovery and her hope afterwards. And like, that's what they wanted to listen to. And I see it, you know, in the classroom, you know, they don't really pay attention to what the presenter is saying. You know, the slides and statistics. Um, and like even like educational parts of, you know, suicide prevention and mental health. But as soon as like me or another partner, we'll go and introduce themselves as like, not even including like a diagnosis. I'll say, you know, I like to paint, I like to do this. And then I'll go into saying, um, my story and then I'll tell them like some really like interesting in graphic and the broad details and there's literally like looking at me like this and like they can't like it. Not a sound, you don't hear a pin drop and it's amazing. So I think that is like one of the most powerful things that any youth could bring to any, any program, any board, anywhere you go. I really like recommend doing that.
Rudy: 24:31 Yeah, I agree. One of the most rewarding experiences of my speaking career, I was actually doing an Ending The Silence presentation and the parent she was doing her PowerPoint slide show and they were brutal to her. Like I thought she was going to give up and this was like only the first of like four presentations we had to give that day. Just completely, completely rude. And then I get up, I do my thing. I'm only speaking for 10 minutes. Boom, boom, boom. They all shut up, they all listen, and they all give good evaluations. Some people are writing the evaluations like, "You inspired me to talk about my own eating disorder or my own self harm. (Crosstalk) I'm going to see a therapist now. Yeah. That was amazing.
Eleni: 25:13 Yes. It's wonderful to see that for kids actually write like "You inspired me to have confidence to talk about my mental health." It's like boom, you just saw change right there. Or I'll stay after class and the teacher will tell me like "this student right here, he has bipolar disorder and that's why she was asking you so many questions and that's why she wants to talk to you after class." I'm like, "this is wonderful." You know? So I think that's like a really important aspect of making any sort of change. Yeah.
Rudy: 25:47 Yeah. No, I agree. And I'm glad you mentioned that. Deiann - Deanna says, "Do you identify with lived and living experience when describing yourself." I believe you did. You did say that. Um, but just for the benefit of Deanna, who is a loyal viewer, do you agree with that? You identify with lived experience?
Eleni: 26:07 Oh yes.
Rudy: 26:09 Do you prefer any better term?
Eleni: 26:11 100 percent.
Rudy: 26:11 Do you have any other ways of identifying as?
Eleni: 26:14 Uh, I usually say "lived experience" or "live with a mental health condition." That's pretty much how I would say it. Yeah.
Rudy: 26:23 Now, do you ever go somewhere and scream from the rooftops, "I have a mental illness!?"
Eleni: 26:28 You cut off there. I couldn't hear you.
Eleni: 26:31 Do you ever like just go say out loud to people, "I have a mental illness?"
Eleni: 26:36 I've said it sometimes. Yeah. I mean, uh, in my speech, uh, at the NAMI national convention, it's like all over YouTube. I said in front of, uh, the CEO, the board, a couple of thousand people. It's online everywhere. I was just like, "Hey, I'm bipolar." (laughs) You know. And I'm just like, you know, like I shouldn't have to be like hiding that I'm saying that, you know. I think it's perfectly okay. That describes my lived experience. So.
Rudy: 27:09 Cool. Um, one more question from the audience and then we'll bring it home. Joelle Marie again says "When doing psych courses, I had similar reactions when sharing my own experiences. People would pay attention instead of screwing around on their phones -
Eleni: 27:22 Oh, yes. (giggles)
Rudy: 27:23 [like during presentations?]. I mean, I've done presentations in front of doctors and they're all on their phones too. So it's not just the kids.
Eleni: 27:32 It's true. People are naturally drawn to the more personal and raw and emotional pieces that they're going to listen to other than the textbook. The - those are things that you can't really hear anywhere else. Um, they're more valuable. Uh, so I definitely agree with that and I've had the same experiences.
Rudy: 27:54 Yeah. I mean, that's one of my number one goals when speaking is to get people off their phones.
Eleni: 27:58 Yes.
Rudy: 28:00 Get people off their phones, uh, inspire to share their own story, and, um, not leaving early. (Laughs)
Eleni: 28:09 Yes (laughs)
Rudy: 28:10 Those are, those are my three goals. So the next, next speech I'm going to do like, as long as I can accomplish those three things, or at least two of them, at least people don't walk out. That's all I care about. So and I will link to your speech. I'll go look that up on Youtube and I'll post that in the comments. I appreciate everyone who asked questions or just said, hi, I see you, Barbara. I appreciate you. I see you Shirley as well. If you're watching this later on the day, later on the week, later on in the month, I appreciate that as well. Feel free to share because that's what gives us a bigger audience and inspires me. There goes that word, inspiration, to do more of these, this is already episode 38. This is going on year two. So thank you for all the support and I appreciate you, Eleni. So feel free to talk about whatever you want to promote, anything you want. So final words, words of wisdom. The floor is yours. I'll give you the whole screen.
Eleni: 29:10 All right, very cool. Well, I would just say that, let's see, reading some of the comments back here. Uh, greetings from Barbara. Alright. Hello Joelle. All right, so I would just say emphasizing the lived experience. I would put that anywhere I possibly could. Uh, engaging youth. So, so important. I have lost, um, all the people I've lost to suicide have been youth. Uh, so I think that is extremely important. Um, youth intervention and suicide prevention is extremely important. Um, and it's a chain reaction. You might be a little hesitant to speak up. I've had people telling me that they're nervous to speak up and so I kind of pull my strings a little bit and they start speaking and then they'll start speaking and it just allows a more comfortable doorway for someone to open up to you. And you'd be surprised how much they're going to come back and start openly speaking and having a conversation. So I encourage you to speak whenever you can or just, you know, check up on someone. So if anyone has any questions about NAMI or anything else, feel (inaudible) feel free to contact me and... (laughs) Got a little, a little mess up there. But yeah, this is wonderful and Rudy is wonderful, wonderful resource and I'm really glad to have been here on the show today.
Rudy: 30:49 Thank you. I appreciate you. And like I mentioned before, you are the, you're the youngest guest I've had on No Restraints. Um, I appreciate that for coming on. Like we'd never met each other. I could have been a complete weirdo and thank you for sticking with me. Like we actually started about 12 minutes late because we could not, I could not get my camera and mic set up. So thank you for hanging in there. I appreciate it. I appreciate all of you (the viewers). And I'd love to have you on like a year from now, five years from now. I'm, I know you're not going anywhere. Sometimes I have guests on and then like two months later they disappear off the face of the earth. So please hang in there. Self Care, self care, self care.
Eleni: 31:29 Oh, yeah!
Rudy: 31:29 I hope you keep sharing your story. I hope you keep leading the way even when you're an old crufter like me and you look on the youth the Generation like Z Minus Plus and look at them like, "Oh those kids don't know anything." I hope you hang in there. Hope you keep sharing your story and I hope you keep being a mental health advocate. And as for next week, you know, I hate announcing guests ahead of time, but I feel so confident about this. My next guest, I'm actually traveling again to San Diego, California to interview mental health advocate extraordinaire Melody Moezzi. That'll be amazing because I've been following her for quite some time. She has also bipolar as well, and wrote the book Haldols and Hyacinths, which is a memoir talking about her experience as a Muslim woman as well. So look out for that next Wednesday, 12:00 PM Pacific. 3:00 PM Eastern Time. (Pauses) Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Gabe Howard. Gabe is the author of Mental Illness is An Asshole and Other Observations as well as co-host of the Psych Central Podcast and A Bipolar, A Schizophrenic, and A Podcast (alongside Michelle Hammer of Schizophrenic NYC). We’ll be talking all things bipolar and more. More specifically, inside my hotel room in icy cold Boston, Mass.
For more info on Gabe and his work visit www.GabeHoward.com
See you again next week for an all-new No Restraints with Rudy Caseres. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes at NoRestraints.net.
Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Suzanne Sagmeister. Suzanne Sagmeister is a Canadian portrait & music photographer. She is also the author of Life After Dark - The Book: 100 Stories of Hope from Survivors of Suicide which includes her own personal story of being a survivor. I've followed Suzanne for a few years thanks to a blogger friend who was featured in the book. I was hoping Suzanne and I would hit it off swell and I'm glad my intuition was spot on.
You can follow Suzanne's work and buy a copy of Life After Dark at SuzanneSagmeister.com. She is also active on Instagram at @SuzanneSagmeister.
See you next week for an all-new No Restraints with Rudy Caseres. New day, same time. Wednesdays 12pm PT at Facebook.com/RudyCaseres. And, of course, you can watch all past episodes and more at NoRestraints.net.
Because it's for your own good.
This week on No Restraints with Rudy Caseres my guest is Kerry Osborn. Kerry is a blogger and founder of The Obsessive Outsiders which is a movement that specializes in Obsessive Compulsive Disorder (OCD) and works to create a new outlook for the media and the average person on mental health. I first interviewed Kerry last March for The Mighty which was a positive experience for both of us. We recently reconnected so when I was looking for a guest this week I knew I wanted to reintroduce her to my viewers. Kerry is an up-and-coming advocate who will certainly be an influential voice in the years to come. She took a hiatus late-2018 but I'm glad she's back doing what she loves. I look forward to having her on again in 2020 and seeing how far she's come since 2019.
See you next week for an all-new No Restraints with Rudy Caseres. New day, same time. Wednesdays 12pm PT. Watch live at Facebook.com/RudyCaseres and, of course, watch all past episodes and more at NoRestraints.net.
Because it's for your own good.