Growing Up Too Fast: When Your Parent has Serious Mental Illness (Ep. 42)

Guests: Karen Comba, author of The Snipers We Couldn't See: A Memoir of Growing Up with My Mother's Schizophrenia

And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ, 

First, your stories.

How has the experience impacted you (Karen writes about life “with footprints on her back”)

How did writing or sharing about it help? Or did it?

How did your experience- and the unpacking of it - inform the work you now do?

What do you most want other children of parents with SZ to know?

What do you want others to know - teachers, practitioners, other adults in a child-of’s life?

How to find happier places for your mind?

Links:
https://christinalord.ca/
https://www.karencomba.com/

Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)

She's Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)

I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental Illness, by Michelle D. Sherman

Want us to cover a topic? comment to share?

Facebook page @Schizophrenia3Moms

@SZ3MomsTrenches -  twitter

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

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SPEAKER_06 0:00

Hi, it's Randy Kay. Many of our listeners have asked us to do a show about other family experiences with schizophrenia. This episode does just that. We focus today on those who are children of people with serious mental illness. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. With Miriam Feltman, Mindy Gryling, and Randy Kay. On tonight's episode of Schizophrenia, Three Moms in the Trenches, we're actually going to shift gears a little bit. And instead of talking from the parental point of view, which is right in the title, that's what we do most of the time. We are going to explore something we've been asked to explore. And we have two amazing guests to talk about the experience of mental illness in your family when you are the child growing up with one of your parents, sometimes more than one of your parents, having a serious mental illness and what that's like, how it's the same, how it's different. And we have two wonderful guests we'll bring on in just a moment. One is Christina Lord, who's a mental health advocate, and she comes from Canada. So we'll get a slightly international flavor. She is the daughter of a dad with schizophrenia and uh has devoted her life to helping people. And Karen Komba, I hope I'm saying it right, but when she comes on, she can correct me. And she's the author of this wonderful book. I told her I'm two-thirds of the way through. Uh, it's called The Snipers We Couldn't See, a memoir of growing up with my mother's schizophrenia. So we have a lot to talk about tonight. Um, hi, Mimi. Hi, Mindy. Nice to see you guys. It's been a minute since our last episode. And uh, you know, I'm just happy to say that uh we have a little bit of follow-up from the last uh conversation that we had that uh Mindy's going to share in a moment. And I want to share a couple of comments that have come in. And I love this one on Facebook. We have a Facebook page that you can just search for Schizophrenia Three Mom's Trenches, and it'll come up. And um, welcome to everybody who's just joined us there. I had a comment from Kristen that says, I have put audiobooks aside and have been listening exclusively to your podcast and sharing episodes with my husband and kiddo. And thank you, each of you, for being so open and vulnerable. You're giving an extraordinary gift to everyone who finds your podcast. And thank you. And she says she commits to paying it forward. So I don't know about you guys, that kind of makes my day. Yeah. Um, and then Vicki uh chimed in with a, oh my God, I love you three ladies. So that's always nice. And it's it's always lovely when someone just finds the podcast. Of course, the later you find it, the more episodes you have to catch up with, but you can start anywhere or just listen to the episodes that really resonate with you. And they asked if we would consider talking about friends we had before our sons were diagnosed. And Vicky wants to know if those same people have stuck with us through thick and thin. Uh, I don't think that's been her experience. And rather than just do a quick update that we sometimes do, I thought we might start by answering a listener question. So I've known about this question, and you guys are, I see you have your thinking caps on. So I'll just, you know, kick in and say that some have stuck and some have not. I think that when my son first became ill, and if this is your first episode, we are three lovely artistic and uh advocating middle-aged moms with uh sons in their 30s and 40s who uh so we've been at this a while. If you're just starting this, you may want to know what your future looks like, and we can't tell you. As far as my friends, when my son first became ill, it um there was confusion and then there was some empathy and sympathy and attempts to help us. And then, as often happens, because serious mental illness is sort of never ending, it just there's no timetable for recovery. I lost a few friends. I also learned with some of the friends I have that to be selective about whom I shared what was going on with just because they were tired of hearing it. And so I kind of saved my support for our situation to share with people who were going through it too. That seemed to help me. But I also do have friends who said, Whatever you need, whatever your son needs, I'm here for you. So the true friends stuck by me. Uh, the other friends maybe some did, some didn't. It's not a very not a very definite answer, but that's pretty much. I still do have friends from them, especially the people who knew my son, whom I call Ben for publicity purposes, when he was a young, bright, sweet, promising, popular kid. And they still love him and they still they still stand by the family. So they have created some boundaries for themselves, but um, the good friends have stayed with me, is the short answer. Who wants to?

SPEAKER_03 5:36

I'll go. Um, I would say I definitely have not lost any friends because of it. I had to be careful with, like you said, not becoming the schizophrenia mom, and then that's all I ever talked about. And I ran into an interesting thing with friends where, you know, when I was with groups of friends, somebody would be complaining about getting a speeding ticket, and then they'd glance at me and go, Oh, well, but you know, it's nothing compared to what you deal with. And you know, finally I really had to get very firm and say to people, look, just because my my son has schizophrenia doesn't mean that you can't be pissed off that you got a traffic ticket. We need to be able to share these things, it's not all going through the schizophrenia meter. Um, it took me a long time, years and years, to cultivate friends like you, two ladies, who have the same thing. So for the longest time, it was just my whole group of friends and they're troopers. I didn't lose a single friend.

SPEAKER_05 6:38

Mindy. I was lucky, I guess, because I can only think of one good friend that I consider lost. And it's not like she's not still a friend. I don't see her very often, and we just um she never asks about Jim. And um that really that's different than not wanting to talk about him all the time. I think we everybody knows if no one ever mentions a person who's died, that's really hard on the family because you still want to occasionally talk about someone important who died. And some this one friend, I think, kind of treats Jim as if he had died. Um, it just never. And so we get together maybe once a year and talk about everything else. And I just learned to forget about talking about Jim. But when he was first sick, I bent her ear and did wear her out probably just two or three times with the whole long afternoon because she seemed so interested. So I think I maybe did it to myself. But um the friends I have now that I've made friends with, I've more than replaced her with so many friends. I'm in two groups of incredible women, each five, counting me, where we get together once a month. It's just like Randy and Mimi, people that you connect with immediately. We laugh, we we cry occasionally, but mostly we laugh and hoist our glasses and just have a really good time. But we also take time to share how each of our, um, in all cases, it's sons. You know, there are women too, but we all have sons, and share how that is going. But the friends I had, I was in the legislature at the time. The sort of person who's in the legislature tends to be problem solving oriented. So they were me all the way with what I wanted to do. Whatever you want, you got a blank check. So I was able to do some things in the legislature that other legislators are struggling with still, just because I had so much currency with um everyone there, including Democrat, but including Republicans. So I think imagine that. Yeah, I know.

SPEAKER_06 8:52

Imagine that.

SPEAKER_05 8:53

They had experience too. It's uh it's an equal opportunity um illness. True that there is no some some of each.

SPEAKER_06 9:01

Thank you so much. So I will say if you're out there and you're just beginning this journey, uh one thing that helped me, and again, I as parents, as we'll discover when we bring our guests on in just about 60 seconds, we generally got to know our loved ones before the illness. And then there was a turning point for after the illness. If you are raised by someone with a serious mental illness, then you may never know, you only know the ups and downs, but there is no before and after. There's just your life. And so one thing I found as a parent is that when people don't know what happened, and they're sharing how successful their lawyer, doctor, uh business owner children are, and they say, ask me, ask about Ben, what I learned to say to make everybody comfortable was just like, you know, I don't, I don't know if you know this, but he developed a disability. So his life took a little different path. And I just leave it at that. If they want to know more, they will ask me more. But that is a way that I have found to to weed out the people who really want to know. And for those who don't, that's enough. That's all they need to know. Good idea. Yeah. So it just was gentler. Um, I will also mention that uh Dr. Thomas Incel has a book coming out called Healing. And last week's guest, Carrie Morrison, interviewed him on her part, on her podcast, which we mentioned called Heart Forward. And Mindy, what did you want to share that one of our guests wanted? We're gonna put it in the show notes. There was a crisis.

SPEAKER_05 10:36

Oh, uh, are you talking about the the information we got from Leslie Carpenter? Yes, from Leslie Carpenter. I didn't realize I was gonna do that, but I I can. Um, so Leslie Carpenter, who um may be a guest, I think, in the future, was is somebody who's very active in Iowa. And so she brought this um up. It's the national NAMI and the Treatment Advocacy Center are having a conference in, let's see, it's April 29th and 30th, where they will talk about um the national focus on the implementation of 988 and the crisis response. So people may know that in July, I think it's July 1st, all around the country, every state has to have a plan for 988, which is kind of mushroomed out of the old suicide hotline. And I know my state is working on how to do better with 911, you know, dealing with black people, Native American people, and people with mental health crises. So, how that will interact with 988 and what each state will do. But people are supposed to be learning to dial 988 if it's a medical mental health emergency and they can connect with the crisis team. It's gonna be different in every state. So I think this is actually really important. Any of most of us have called the police at times. So, how is it gonna work? Will we get the police? Will we get the crisis team? Should we still dial 911 if it's the police? We don't know. So it's an incredibly important conference to hear what is is um nationally.

SPEAKER_06 12:24

Okay, so we'll put that in the show notes and thank you. And um, that's that's great. If you're interested in that, I'm sure we'll hear more about that as as the weeks progress. So thank you. So now I want to bring on our guests. And by way of introduction, uh, we have Christina Lorde, who has a website, Christinalord.ca, and she's come on to share her story and be a resource to all of us. If you're watching on YouTube, Christina is uh going to keep her camera off, but you can unmute. Hi, Christina. And we're also bringing on Karen Kamba. Am I saying your name right? Say it from a combination. Okay. Karen Kamba, who has written this amazing book just released, correct? It's March 22nd. March 22nd, and it is called The Snipers We Couldn't See, a memoir of growing up with my mother schizophrenia. Now, as a welcome, both of you. So nice to see you. I will say that as a uh family-to-family teacher, there is a class at which toward the end of the experience where we talk about family groups and common life challenges for spouses. And we will be doing a show on that. We're going, we're going to be doing a show on dads, we're going to be doing a show on siblings. We did a sibling show, but you know, this always, it's not always just about the parents. And among the common life challenges for a sibling or adult child might be some of the things that our guests are going to talk about today. So, welcome, both of you. The first question we're going to have for you is to just ask each of you as briefly as you can to tell your story, and then we'll have a conversation with the rest of the questions. So, Karen, since I can see your face, I'm going to start with you. Um, and I'm going to keep an eye on the clock. And I, you know, if I if I interrupt you, I apologize. But you know, this so tell us, tell us the overall story. It's your mom, right? Yes, who is no longer with us. I know for sure.

SPEAKER_04 14:34

Well, first up, I want to thank you all for having me. It's just wonderful to have a chance to get the voice out there for the silent child. And what I mean by that, I um grew up, uh my mom started to have um the unfortunate attack of schizophrenia, mental illness disease when I was four. So I went through the whole raising. Uh, my mother raised me, went through the whole thing. Um, it was after she passed that it haunted me that there wasn't some place or someone to talk to. You know, you go through your whole growing up not feeling loved. You can't be called uh dumbbell and you're worthless and hit and continue different kinds of abuse. The child don't look at it as abuse. The child's looking at that, they love their mom, they don't know why she's doing this, or the parent. Um, they go to school for their refuge, you know, you're getting away. So it's more of the understanding, like um one big thing I'm really focusing on is for the children, is my I'm a woman on a mission, is what I am. I I'm trying to save the children. If I I told my husband I couldn't leave this earth without at least saving one child. And I think where I go with that is you go to school and you don't focus on your schoolwork. You're you left your home maybe with a different kind of look, maybe a hit, maybe something said, and then you are fearful of going home, what you're gonna get. So your whole um they look at the child maybe as a DNF student when really they're not being able to focus on schoolwork at all. So there's a lot of that, um, but they're silent. I've been getting hundreds of emails already where they're telling me not to quit and to keep telling everybody that the kid is quiet, they're not showing signs of abuse, they're not showing anxiety, they're just sitting there quiet because they don't want the repercussions when they get home.

SPEAKER_06 16:43

So we're gonna get to a message for the children in a minute. Just gonna double back to your story for a second. So you grew up on a farm, yes, and I know they were seen, and you have a younger brother, yes, and a younger sister, and a younger sister, and so you're the oldest, that's like triple responsibility. And I also know that there were times in your book where you feared you might lose your dad too, because he wasn't all that stable all the time in terms of his mood. So that's a that's a lot. That's a lot. Um and your mom did pass away by suicide, correct? Yes, she did.

SPEAKER_04 17:24

She commit suicide when I was 29.

unknown 17:26

Okay.

SPEAKER_06 17:27

So I'm gonna leave it there for a second and let Christina tell her story in in the same way, and then you know, uh Mindy and Mimi, I'm gonna let you bring on the next question. So Christina, hi.

SPEAKER_01 17:42

Hi, hello everyone. I am I'm really um grateful to be here with you all. I love your podcast, first of all. And Karen, I um I I really heard what you had to say, and I think it's a I'm excited to hear about this mission that you have and this passion. Um, I can relate. Um and you know, again, this is my interpretation of events, my story. And um so my I, you know, I love and care for a father living with schizophrenia. I was born in Portugal to my Portuguese parents, and I came to Canada or immigrated with them at seven months old. And this all took place in like 1976. Um, I have fond memories from what I can recall of my earlier years, where I grew up with aunts, uncles, and cousins, and there was always kind of uh an idea that we all took care of each other, and but that shifted. Uh, around seven years old, um, my dad made a family decision to move us to an entirely different city, five hours away from supports, um, with no rhyme or reason. Um, and at this point, um from what my mother shares with me, you know, it was a point where she started to see my dad acting peculiar and out of the ordinary. He began accusing my mother of things that couldn't possibly be real. And at this point, we didn't know that, you know, what he was going through was starting the starting of delusions and hallucinations, which actually started to impact his mood. And I my mom says she was scared and didn't know where to determine. And you have to imagine, you know, immigrating from a country back in 1976 to an English-speaking land, it was very daunting culturally. So my mom could hardly speak a word of English. And so my mom on several occasions sought professional help, but no one seemed to comprehend. And it took probably five years till my father was admitted to the hospital. And I always remember my mom sharing a story of police officers coming to the door and her literally grabbing the police officer, putting her hand on the Bible, and saying, You have to believe that something is wrong with my husband. And that was life-changing, like hearing my mom share these bits with me.

SPEAKER_06 20:11

And um you were how old? I mean, do you remember this happening?

SPEAKER_01 20:15

Or these are this is my mom, and my mom, I I'm very curious. I'm a curious person, and as you're gonna discover in this podcast, I I I kind of want to come to get to the truth of things. And um so I was probably, like I said, around you know, five or six when this was happening, and then when we moved to the other city, I was seven, and then I have a little brother who was born in 1984, and so around that period I was around eight. And it was it was a life-changing event for my mom, um, because of what she shared with me, is like she gave birth to my brother at the same hospital my father was institutionalized, which was like a couple of floors below. And then from there, you know, my brother was my first friend, and I resonated kind of you know with what Karen had to say, um, because you know, my mother did her best, and she had to leave. She had to leave me at eight years old with my brother, who was a baby. Um, and when it's not legal to leave an eight-year-old taking care of a baby while your mother works the night shift. Um, and when I was eight years old, she would leave me with warnings to to not answer or open the door, and she would leave me with the following you are a big girl now. And fast forward to 2000, you know, I was 23, my brother was 16, we, you know, he came to see me at a you know, Toronto, which is a big city here in Ontario, uh, for a concert. And that was the same weekend in 2000 that my father wrote a letter to my mother informing her of his decision to leave her on that day. And so So from there he left. Um and he never he never did come back to the household, and that's and you were how old you were how old? 23. 23 at that time.

SPEAKER_06 22:13

So you have um, and we we're gonna ask you deeper questions in a second. So just to get the overall, you grew up, it sounds like you grew up with a dad with schizophrenia, but it sounds like much of it was hidden from you, or you didn't have to witness that much. Do I're right, you're exactly right. So a little different from Karen, but it still affected the whole family. Okay, and your father is still alive. He is still alive. Okay. Uh Mimi, I think you have a question.

SPEAKER_03 22:45

Yes, I do. I have a thousand questions. Um it's it's really stunning to sit and consider this from where I sit, where we sit, because so much of our understanding and our mode of dealing with serious mental illness is about the fact that it's our responsibility. And as women, especially, the buck stops with mom in general in the world, and when dealing with a sick kid, especially mental illness, it lands in your lap, and it's something that you accept because you brought him here. I mean, that's what I've always said. I brought him to this world, to this life, and it's my job to herald him through it to whatever degree is needed, and what it this just sort of flips the uh script in such a way because all that responsibility that I feel for him is the responsibility that your parents should have had for you and you didn't get. And so I almost don't know where to start, except that I I will ask the other parent. Um did the other parent pick up the slap? Did the other parent explain anything to you? Um, what was the role of your other parent?

SPEAKER_06 24:07

So I guess we'll do Karen first and then Christina is probably easiest that way.

SPEAKER_04 24:12

Yeah, thank you. Um I can I can tell you, um uh Mimi where that went. Um my father knew what was going on. In fact, when my mom first went in for electric shock treatments when I was five, took me to the hospital to see her. Um, my biggest grief, I think, is that not explanation. Nobody talked to me about what mother had, but I knew she had it and she was directing it at me. The where the title comes, the snipers we couldn't see, was you know, she would she would say people were shooting at our house. So she would grab me and say, you know, you get to that side of the house and you take care of your brother and sister, you have to play on the other side of the house, they're shooting. I would stand there staring at the outside of the house, looking for the holes where people were shooting because you believed that parent. And you're four and five years old, so you're believing this. This is your mother. What she says is what mom say, you know, you but no one says to you that your mom's sick. Um, they say your mom has to go away, your mom has to go to institutional. But my mom really came after me. I was one of the main targets. So I definitely knew something was gonna. I was scared of death sometimes. I just wanted her to love me. I wanted the hugs. There was no hugs and there wasn't no I love you. So were you protected by your father though? Yeah, yes. You know, he he was um, I have to say he was a rock. It was back in the 1960s, you know, when this was going on. So he had incredible bills to pay. We were at a huge farm and workaholic trying to pay the bills. Insurance didn't cover mental illness. I didn't know that at the time, but so he was like working nonstop. He'd come in the house, have to deal. A lot of times, mom would beat me and say the things to me when he wasn't in the house.

SPEAKER_02 26:11

Not always was it in front of him.

SPEAKER_04 26:15

And I found myself kind of looking at him like, are you gonna save me or say something, you know? And he never did. So um it became my war against the against the fear uh and not saying anything because I was scared if I moved wrong, I was gonna get it. Um, and it was crazy talk, you know what I mean. Um nothing made sense, but it made sense to me because mom said it did. So wow, you know.

SPEAKER_06 26:46

Christina, how about you?

SPEAKER_01 26:49

I I I feel that my mom did her very best. I think she was protecting me. Um, I never really heard anybody like that I can remember that said, this is what is happening with your father. Um, I always just knew my mother was always working, trying to support the family, trying, she was carrying two, two roles. She was the masculine and the feminine. She was the um, you know, father and mother. And um I believe she she did her very best for me, but I was left alone a lot. And I was left with my dad at times, and I I I adore my dad. I would spend tons of times with him. I never saw anything wrong with him. I never, he never, he was always really kind to me. And and even when he'd go off in the distance, like you could tell when he'd kind of go off in his own chain train of thought, or when he'd stay up really late, and I'd come down to find him looking at glasses of water that were filled with sugar and and just the most oddities that I couldn't understand, but I accepted them. You know, he it never interfered with me, but I could only imagine how much it interfered with my mom and how much she held back from um she wanted to protect me and then protecting my brother. Um, so I became quite responsible um at at a really young age, and I still feel too responsible sometimes that uh, you know, control is my safety net.

SPEAKER_03 28:27

And that's the thing is you don't have somebody to take care of you, and you have to become the adult.

SPEAKER_05 28:34

Yes, yeah. I have a question that both of you have talked about being quiet and the quiet child, and you didn't tell other people. Um, and I have to say, too, I had my grandmother had schizophrenia, but I had my parents in between. So my mother was target, the who was the daughter-in-law, and my father got along with her pretty good. But all the things she was doing, she was a very loving grandmother to her granddaughters. And um, and also if we didn't understand something, then she was, as you said, talking crazy, we could check with our parents. So it was a totally different experience. But when you went to school, or when you went to other relatives, or when you played at other people's houses, it sounds like you didn't share anything there. I was told by my parents, don't talk about grandma, it's nobody's business. Don't talk about when she's at the state hospital and so forth. Did you ever try to talk to anybody when you were um so young and were rebuffed, or did you just we were too terrified to do it? And then the second part of my question is was when you wrote your book, um, Karen and Christina, as you got to be older, was that when you finally had the release of being able to share? So a two-part question. First, you were quiet. Did you share with anybody? Were you allowed? Did you give yourself permission? And then when you were able to finally talk about these things and share, what kind of release was that for you, especially if you had been quiet all along?

SPEAKER_06 30:15

Question for the child and a question for the adult, right? Right. All right, Karen, we'll start with you.

SPEAKER_04 30:20

Okay, well, for the child, I will tell you. No, I did not. Um, Mindy, I didn't tell anyone. I was more engulfed in looking at their home, seeing how their rooms looked, if it was the same as mine, if their house was like mine. Um I just yearned for them, you know. They they have no idea. They didn't know how important it was for me to go visit them. It was just like a, it was like I got to just breathe and I got to live and I and I just took deep breaths. Um, my mother on a whim, you know, I would um would turn on me and I'd go up and hide underneath my bed and I'd hear that broom coming, and she would just stab the broom underneath the bed and you know, stab. So I never knew what I would do to cause it. So in turn, when I got to visit other children and other homes, I wanted to be quiet because I never knew when that stick was coming, or I didn't know what was going to, I didn't want my mom coming over and doing anything. I was almost like, I don't want my mom over here doing anything like that. I didn't want them to see it. I was more like, I don't want you to see it. And so I was very, very quiet. Now as an adult, I'm 64 and I just finished the book and I will be, I've been doing it for the last 12 years. It's been inside of me for 30 years, but I just worked very hard the last 12 years to get this thing out. So as relief, I don't know. I can tell you by not getting any, by not having any help, if you will, as a child, as a it went right into my adulthood. I've lived my whole life with it. It's made me question everything I've done. I've quietly asked myself if I was where I belonged in this society. Um now that I've finished the book. Um, it has given me the power. I'm just don't want to not help another child. That that made me realize that I've got to do it. I've just got to do it. Uh, has it relieved me? I'm not sure that that will ever happen because I never got. I don't think that's totally gonna go away from me.

SPEAKER_06 32:44

Thank you. And no matter how much the adult heals the adult in us, there's always the child in us that wishes something had been different. Christina, how about you? Same question.

SPEAKER_01 32:56

You know, first words that come to mind are this is an adult matter. And as a kid, living uh within uh a cultural family, a Portuguese family, we just we just kept it to ourselves. We didn't really talk about our problems outwardly. I I never I I can I can't remember ever asking cousins or it was just an unsaid thing, and you'd have meals together. Um, everybody knew something was up, everybody knew that, you know. The one thing that I can say is the biggest thing I would see is I'd look over my mom, and I would I would I never wanted to give her anything to be shameful in regards to me. Um, and so I didn't want to give her any more responsibility, and I wanted to make her proud because of everything that she was given. So I think there came a point in my childhood that came really clear from seeing adults dealing with adults or adults dealing with my mom. And this is something I'll say in Portuguese, but my mom says it all the time, uh, and all that translated in English, she'll be like, pena eprej galinhas. And that means pena is feathers and pity in Portuguese. So when you translate that in English, it's um pity is pity is for chickens, and we're not chickens. And so I love it, you know, and so I that strength that my mom she's she's was she's given me just a different outlook. You know, I get that at times it was a struggle for her, but as an adult, or even getting, you know, the people I talk to is school. So there was a group called the Rainbow Club, and all that was my first interaction with talking to someone within my elementary school. Something is up at home, and I this is what I know. I think it's this word called schizophrenia. That's what I've heard people say. My dad does this, and that rainbow club changed my life. That counselor did so much to boast my self-esteem and my confidence, and things I wasn't able to get at home. I was getting through just outside of the house. And then as an adult, it it's it's dictated so much of why I do what I do now and why I believe what I believe now. And I I really feel compelled to people need to know to navigate this system. People should be talking about this to their kids as young. There should be more kids' books, there should be more education, that's where it begins.

SPEAKER_06 35:51

That's so that's so powerful.

SPEAKER_05 35:53

One of my one of my friends who is working on a book right now, but she's written children's books. She could be a great guest at some point. Um, but one of her children's books was about what if your parent has uh schizophrenia? What do you do as a child? And her name is Michelle Sherman. So if you Googled that, I can't remember the title, I should, then you would come across her book. She is a psychologist, and she's written the books for children with her mother, who's a teacher. So that's a dynamite combination. So be some, but not enough.

SPEAKER_06 36:32

That's that's amazing. I'm gonna put that in the show notes as well. And also, there's a book. I have a friend Linda Appleman Shapiro, and she wrote a book. It's been revised. I the title may be different. It was called Four Rooms Upstairs, and she wrote about her experience in Brighton Beach in Brooklyn back uh she's back in the 40s, and and she just said, I didn't know any different, you know. Don't moms go to the hospital? That's what they do, right? They go to the hospital and then they come back and they're better for a while, and then I'm scared again. But she speaks so eloquently in the book about having her first sleepover at a friend's house and being like, What? This is what a family is like. Uh so I think you all have a lot to talk about. I'm gonna sum this part up because I want to get to now how this has informed the work you guys are doing now and what your mission is now. Obviously, your stories is a lot more to tell, but I will, if you're listening and you're at a phase, some common life challenges for a sibling or an or an adult child of someone or a child child is coping with disproportionate attention being given to the parent with the condition, or growing up, this is just what you guys have just told me. So it's a summation, really, growing up in an atmosphere of secrecy, confusion, silence, shame, witnessing frightening symptoms, psychotic episodes, and personality changes, being threatened, frightened, or physically or emotionally hurt by someone who's supposed to be a caring, protective family member. Bearing the social stigma of having a loved one who might be viewed as strange or scary or different, supporting the emotional needs of the caretaking parents or the neglected partner. And you both mentioned having more chores and responsibilities, being left alone, um, having to mature quickly, pressure to be perfect to make up for the parent who has a mental health condition, worrying about the parent, worrying that you'll get the condition or that you'll do something to make that parent worse, and worrying about how much you should do for the loved one. So you've mentioned a lot of those. I mentioned them again to let you know you're not alone. I'd like to move now to your experience and how it informs the work you do now. For Karen, it's your book with advocacy with it. For Christina, I know you're a mental health advocate, and I want you to tell us about what you're doing. Tell us about your work you do now, and then the next question will be about what you messages you have to other children of parents with schizophrenia. But let's talk about your work and your mission, Karen. Well, thank you.

SPEAKER_04 39:26

Um, my mission, um, we talk about what I think is wonderful is when it's in the schools. Um, my goal is um I've been asked to speak and they've asked if I do assemblies. I've not gonna do assemblies. I said more important, it's about getting to the teachers and getting, um, I'd like to team up with the psychiatrist. We're dealing in that right now about who wants to jump on board with me, going and giving uh teachers actually the professional classes where they can come and listen, what to look for in the child, look for the child that's not smiling, look, you know, and give all the, and then have the psychiatrist part of the part so they really understand that. Um tag teaming, that's what I'm wanting to do, is go speak and just get in the in the face of this. The reason I say that is the poverty level is there also to be looked at. Not everybody can afford to go see a psychiatrist, not everybody's gonna say, okay, my partner has it has is mentally schizophrenia, so now I'm gonna go take the children to see someone. They don't do that, they're they're just not gonna do that. Not most of them can't afford to do that, and so I want to get where that child is. And the way I'll do that is probably through the teachers and psychiatrists and that. So I've just started opening up my invite for speaking and getting out there. I'm not gonna stop. This is my last journey, and this is my journey that I'm gonna do, which brings joy to me. So that's kind of what where I'm headed to what I want to do and my goals speaking in front of. I also have been asked to come to colleges and speak to the people that are learning to be psychiatrists and speak to them about the part of the child that's not ill. Look look a little bit beyond that. My biggest thing that I live by is when you diagnose the parent or the guardian with schizophrenia, the next question that should come out of the psychiatrist's mouth is is their children at home? And then we go. And then the then we start working because that child's not gonna be able to get out of there. They're trapped, they don't want to really get out of there, they love their parents. So we've got to implement some awareness. And I'm hoping that I I know it's gonna take a big village, and here starts the village. You know, you start saying it out loud, and we have to start making villages and communities and not wait for me either. Just start making a change in the life of, and also one more thing that I really wanted to stress is making it easier for that other parent or that other guardian to say, my partner has schizophrenia and be able to go to the school and say this and not feel like they have to be quiet and maybe have some classes. If there was in high school, I'd like to see some mental classes in there so the children learn that this is what their home is, learn about what their parent has so that it doesn't hamper their adulthood.

SPEAKER_06 42:27

That's amazing. So, Christina, how about you? I know you have a whole website, Christinalor.ca, and you have devoted yourself to helping people as well. So tell us about your work.

SPEAKER_01 42:40

Yes, thank you. Um, you know, the biggest thing is I share my experiences with schizophrenia from a place of a daughter. I share my experiences with a mental health system in regards to what it's really like to navigate as a family member. And in sharing these experiences, my hope is um we can begin to kind of shift the mindset and stigmas associated with mental illness. Um, but it really again, I think for me, I've I've this journey just began. This like this journey has been lifetime, but the work itself and the courage to actually come out and share my story has only been in the last eight years. And in 2018, uh with a friend and a colleague of mine, uh, we brought an event here to our city uh called Elevate. And it was an amazing event where we brought um uh Margaret Trudeau. I'm not sure if you're familiar with the name. Oh yes, yeah. She she came to talk about her bipolar diagnosis. Um, but it was she was the draw. But what came out of that event was what I wanted to happen was I wanted individuals from the community to share five minutes of their stories, and I called them impact statements. So in 2018. We did it. We brought in many people sharing their impact statements. And we then brought in experts within our community that could talk about the physical, the emotional, the mental, the spiritual, the social diet, you know, all those components that govern our lives and be able to actually pull from these experts this panel of discussion. And people start, people all of a sudden walked out of that event feeling number one, seen, heard, and understood, understood maybe potentially the level of supports that they could get and an awareness. And so for me, um, that began a movement where it's funny, the pandemic stalled it all, and I feel like a hermit these days, to be honest. Um, but I do little things like I have my website, I definitely um put myself out there as someone that advocates for those who have mental health or mental illness. I'm a psychoeducational uh facilitator. I do uh programming in cognitive behavior therapy as mindfulness for the local Canadian Mental Health Association within Canada. Um, and so for me, any opportunity I can to navigate the system of care, to guide someone that maybe has a loved one who's been really newly diagnosed with schizophrenia bipolar, whatever it is, um, I want to help them because I know how challenging it was for my mom. And I have now, you know, had an experience where I was able to ask questions to a psychiatrist who denied my father a community treatment order that would have probably helped him and ended him up homeless on the streets. And that's a whole other discussion, which I know you guys did a wonderful podcast on homelessness recently that just rocked my world. And it just to me, there's there's a crisis out in our world right now, and each of our cities are being impacted with homelessness, with misdiagnosis, with people not being properly taken care of. Um, and I don't know what the answer is, but uh all I know is I can just begin within my city. This is my world here, and if I can start here, I think that it can change anything.

SPEAKER_05 46:25

That's amazing. Before we go on to the next question, I just have to say for those who aren't of the age of uh some of us here at least, um, that uh Margaret Trudeau is the Princess Diana of Canada. Both of them had bipolar disorder. And also uh Karen, I wanted to tell you, I was a teacher at one time, and I think uh educating teachers is a really good thing, but I would encourage you to do an assembly or two. I think that's really harder to do. Put yourself more in the emotional line of fire, but um, but think of all the children who, you know, you can translate what they're feeling and they could relate to you and know they should do something even better than hearing it from their teacher. Okay.

SPEAKER_06 47:15

You're next up.

SPEAKER_03 47:18

I I you know, I think about these children and I think about them just uh lost out there in these homes, and we can't get to them and we can't help them, and they have these uh childhoods of overcompensating and hiding, and basically a childhood on eggshells and the PTSD and the long-term effects of it, and so you can you can write the books and you can do all of that, but I just keep thinking, how do we get to these kids to mitigate some of this damage before it's done? And I'm just wondering what you think about that because I just want to run out there and gather them all up. It um it's so painful to think about this. Do you what do you what would be your message to the kids or you know, or your ideas about how do we get in there and help them before all the damage is done?

SPEAKER_06 48:17

And Christina just put a heart reaction on her little box. So if you're listening, just know that that happened. All right, Karen.

SPEAKER_04 48:26

Well, I think um uh I will tell you, Mimi, I felt the same way. I I just want to run out there and grab them all and just bring them home. But I think that you have a lot of ages you have to look at. So if they're little, like four and five, they're needing a lot of hugs and I love you. So that's a lot of they need a lot of that physical attention that they're not getting. And then as the child gets older, um then the educational part, like just saying the word schizophrenia and it's uh explaining mental illness to them. I do believe I um, and uh Mindy, I love what you said about assemblies. I that made me feel better because my fear was that if I got in front of too many children and the children that didn't understand mental illness, would the child still be quiet in there? Because I've am I zeroing them out in front of their so-called other friends? And with the bullying and everything that goes on now, are they gonna are they gonna be fair to that child? Will that child come to me afterwards? Um, I'm not scared of it. I mean, I would love to just have a room and say, you know what, you want to come talk to me. So you're giving you're giving me faith to get out there and do it.

SPEAKER_05 49:40

That would be a great way to do it.

SPEAKER_04 49:42

Yeah, I'm just gonna give it to them, but be available for those who come. Yes, and uh kind of get in a place where they feel safe, they can talk to me. Um I do feel that if we can get, and Mimi, you were saying that what can we do? I will tell you that if we don't do it and this world doesn't make a big change right now and start focusing in on the child, then you've lost, the world has lost because this is how much I I've known it and feel, and people I've interviewed and everything. The world has lost so much because you don't have your self-esteem, you don't know who you're gonna be, you don't know what purpose you had in life. So when you leave that home and you never got any help, the world missed out on maybe the next best waitress, the next best banker, the doctor. They have missed out. So all these people, millions before me, during me, and that will come after me, that the world could have thrived on and the prosperous, you know, the you know, whatever whatever special thing they were gonna do and be good at it, they didn't do because they didn't feel they were supposed to do it, they didn't think they're confident enough to do it, they didn't have the support to do it, they're still trying to figure out what the hell just happened.

SPEAKER_06 51:06

They're in survival mode. Yeah, they're in survival mode. And I and I will add that you know, when you said, Well, I go to I I I'm gonna go to colleges and universities to speak to psych psychiatrics. I'm like, no, talk to the freshmen, like talk to the, you know, anyway. We we we only have about five minutes left, so I want to make sure Christina gets to answer that very so yeah, so thank you.

SPEAKER_01 51:31

Thank you. Um so immediately I go to um thinking about my two boys. I have a 13-year-old and an 11-year-old, and they've never met my father. And so I continue, I talk about my father all the time. I share about him, I share that he has schizophrenia, that he has a mental illness, um, that he's lived on the street. Like I'm very honest. Um, but what's sweet about that is they they know when I'm sad, if something has happened. They're like, oh, okay, mom's having a hard day because you know, something's happened to dad, her dad. And my youngest said to me the other day, and it just it touched me. He goes, you know, next time you go visit your dad, let's do a video so he can see what we're like. And to me, it shows that it just personalizes things, right? And it opens up a dialogue that's bigger than us, and it just brings the humanity of it all. And um, I I really that was really brilliant in regards to what my son said. And then I also think that it's about peer-to-peer support. I I think peer-to-peer support and having mentors and people out there that are uh part of that education, that's where I got my support. That's where like that peer-to-peer is invaluable. And um, you know, that's where you start to gain a sense of freedom of being able to talk about schizophrenia, talk about bipolar. If you feel supported by others, you won't be afraid of anything.

SPEAKER_05 53:10

So I have a quick question. Maybe this will be the closing question, unless Randy has another one. But we obviously have Karen's book and Christina has a web page. Are is there any one or two other resources that either of you or both of you individually want to share with our um our viewers, listeners that might help people that are in your shoes as children and adults?

SPEAKER_01 53:41

Um I'll go first if that's okay. Um I uh the in the Institute for Advancements in Mental Health is a Canadian institute and it's called IAM, and they support people with mental illness. They have like they they they're all about innovative solutions. Um, and so I I usually recommend that to a lot of individuals who are dealing with uh a family member with schizophrenia. So um the other one is the Canadian Alliance on Mental Illness and Mental Health. And uh to be honest, I love NAMI. I follow them online, I think they have such a great program. Um, and so you know, of those three, those that's kind of what I would recommend.

SPEAKER_05 54:25

Is the Canadian Alliance kind of like NAMI, but in Canada?

SPEAKER_01 54:29

Um, I think it's uh it there's the Canadian Mental Health Association, which is different, but it's similar to NAMI, yes. Okay, thank you.

SPEAKER_04 54:38

Karen? I'll go NAMI as well, but um, and that's what's kind of it's so fun because I've they're wanting me to share now on family experiences and maybe get onto some speaking engagements here in Denver. And uh New Jersey is looking at having me come speak with them. And so, but one that I have here is the children uh C O P M I, which is Children of Parents with Mental Illness. That's a really good resource. Um, on my website, um there's a resource page if people want to check that out. It would be for any anybody, regardless of what they could just go there if they don't even have to get the book, they just go there and get on the website and go to the resource page.

SPEAKER_05 55:19

And they should get the book too, though.

SPEAKER_04 55:21

They should get the book.

SPEAKER_06 55:24

So is the website the snipers we couldn't see, or is it your name?

SPEAKER_04 55:27

Or no, it's www.karencomba.com. And so it's just my name.com, and I have a beautiful uh resource page, and it it would be very helpful for anyone with uh schizophrenia in the family.

SPEAKER_01 55:41

Can I end with a quote?

SPEAKER_06 55:43

Yes, that would be wonderful.

SPEAKER_01 55:44

It's an unknown quote, but it was to uh Randy, you had asked a question about happiness, and I was already with this one.

SPEAKER_06 55:52

So great, because that was our last little how do you find happier places for your mind? Because I just wrote a book, Happier Made Simple, and we talk about our story in there, but it's not a plug from my book. But I would love if you would end with a quote, and then maybe Karen, you tell us where you find joy as well.

SPEAKER_01 56:07

Thank you. Happiness is not the absence of problems, but the ability to deal with them. Imagine all the wondrous things your mind might embrace if it weren't wrapped so tightly around your struggles. Always look at what you have instead of what you have lost, because it's not what the world takes away from you that counts, it's what you do with what you have left.

SPEAKER_06 56:33

Oh my god, I'm speechless with that one. It's beautiful.

SPEAKER_04 56:38

Well, I'll just leave it on this. You know, it life is a gift. Every day I wake up smiling, laughing. You know, I love I just find joy in my day. And I come, my I always on the back of my book, I always say, I find my happy pond every day. I wake up to find that. I just because I know I had a brain aneurysm last fall, they found it. I had surgery and I wasn't supposed to be here, and I'm here. So life is good, and so you just have to keep pushing, you just go. You go, life is just everything.

SPEAKER_06 57:07

Wow, and I'm very humbled. That is amazing. And uh, I I hope to have you guys back again in you know in a while, and just there's so much more that we didn't get a chance. Mindy, um, Mimi, any last words from you guys as well?

SPEAKER_05 57:23

I just want to thank them. I just think this was a beautiful program.

SPEAKER_03 57:27

Yeah, and I think that you know it it comes down to a similar thing for us too in our situation, is we gotta all keep talking about it. Because that's the way that we're gonna create the change. That's the way that the teachers or the next door neighbors or your mom's best friend is gonna know to take you aside and say, Are you okay?

SPEAKER_04 57:50

And basically, we have to say, here's to Ben, Nick, and Jim.

SPEAKER_06 57:54

I mean, I just thank you. Thank you, thank you so much. Karen Kamba, her book is tell us the title again. The snipers we can't see. There it is. A memoir of growing up with my mother's schizophrenia. Her website is Karen Kamba.com and Christina Lord at ChristinaLord.ca, representing two countries. We are Mimi and Mindy and Randy. You know our books, Ben Behind His Voices. He came in with it, fix what you can. We're all doing our best to make the world better. And it's been a pleasure to be with you guys today.

SPEAKER_01 58:32

Thank you so much, everyone.

SPEAKER_06 58:34

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at MiriamHyfenfeldman.com, MindyGryling.com, or Randy K.com.