A Sister’s Love and SMI: Grieving the “Perfect Other” (ep.60) with Kyleigh Leddy

Guest: Kyleigh Leddy, author of “The Perfect Other: A Memoir of my Sister”

“I wish my sister gets better” - that became part of our guest's yearly birthday wishes, and more often too.

Our daughters have probably made that same wish - or at least they used to.

In 2019, Kyleigh won the New York Times Modern Love college essay contest for an essay she wrote about grieving her sister, Kait - and now it’s a book.

All Kait Leddy had ever wanted was a little sister. When Kyleigh was born, they were inseparable; Kait would protect her, include her, cuddle and comfort her, and, to Kyleigh, her big sister was her whole world.

As they grew, however, and as Kait entered adolescence, things began to shatter, and Kyleigh could only watch in horror as her perfect sibling’s world collapsed around her. Kait was institutionalized with what would eventually be diagnosed as schizophrenia, leaving Kyleigh and their mother to handle the burden, shame, and guilt alone.

Then, in January 2014, Kait disappeared. 

Her sister tells us about the loss, their bond, the story, the stigma - in her latest book.

Questions:

1- what do you most want people to know from your story, your family story?

2 - tell us what Kait was like before SZ, and as it developed.

Did kait’s concussions cause her SMI? 

3 - you and your parents - how are you now?

4 - does Kait leave a  legacy ?

5 -is the sibling experience often ignored in SMI? What is unique to sibs? 

6 - your writing process etc. and links 

Links:

https://kyleighleddy.com/

https://www.nytimes.com/2019/05/03/style/modern-love-sister-vanished.html

https://www.amazon.com/dp/0358469341?tag=harpercollinsus-20

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Transcript

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SPEAKER_00 0:00

My sister was this beautiful, outgoing, popular, smart person who had on the outside everything in the world you could want. And we did have a lot of privileges and resources other families don't have. And just how that still wasn't enough.

SPEAKER_01 0:15

And boy, is that the truth. In this episode, we speak with Kylie Letty, a loving sister, a grieving sister, and now a best-selling author. And in the beginning of the podcast, share a few current crises of our own as we all continue to try to spread the truth and some hope about mental illness in the family. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kaye. This is our 60th episode. Welcome. This is called A Sister's Love and Serious Mental Illness, Grieving the Perfect Other, which is the title of an amazing new book that just about broke my heart and also impressed me so much with the writing ability. We'll be speaking in a few moments with Kylie Letty, author of The Perfect Other, a memoir of my sister. And we are three moms with three sons who have schizophrenia and more than three daughters among the three of us who have experienced a similar loss to Kylie's, and we'll talk about that in a second. I'm Randy Kay. My book has been behind his voices. Mindy Gryling's here. Her book is Fix What You Can and Mimi Feldman's book as he came in with it. And Mimi, you did an event last night. Can you tell us about in person? Yeah. Delayed book launch.

SPEAKER_03 1:49

Tell us so exciting. I just have to tell you the one part of it that was so amazing was at the end, sitting at the big wooden table with a line of people and signing my book because I never got to do that. And yeah, all my friends have written books. You see all that, and it was this thing that I had fantasized about. And finally, two years later, I got to do it. So that was sort of a dream come true. That was nice. And the event was great. It was standing room only. And the interesting thing was it was here in LA, which you know, my hometown, and half the people there I didn't even know. So it was very interesting to see all these people. And a lot of it came from our podcast. There was a lot of talk and a lot of thank yous about our podcast and how much it's helping people and making them feel less alone. So, all in all, it was a terrific night.

SPEAKER_01 2:44

That is awesome. And you called it the zen of schizophrenia, which I think was an interesting title and a good draw.

SPEAKER_03 2:51

Yeah, I um and then I realized as I'm writing my speech, well, I guess I have to figure out what the zen of schizophrenia is. And I did. Wow, I said, and this is I mean, tell me if this resonates. I said, you know, when when you deal with a loved one with schizophrenia, when you deal with schizophrenia in your life, it's like a wild boar running through your life, messing everything up all the time. And the the zen out of that comes from, like I say, this thing of being embarrassment proof, that um you don't sweat the small stuff, it becomes very clear very quickly what is important, and you don't waste your time with things that aren't important, and there's a zen to that. And um, when you're living a life where everything's being knocked over and you know ruined all the time, you also get very agile and you're able to love completely at the drop of a pin anytime. So I decided that the zen of schizophrenia is knowing that you can't do anything to control what happens in your life or what happens to you. It's 100% not in my control, but what is 100% in my control is my own grace and how I process and deal with it. And it may not sound like much, but to me, it feels like a lot. It is be a poet to Mimi, in addition to an author and a writer. Well, anyway, that's that's what I did last night. It was great.

SPEAKER_01 4:30

That's wonderful. And and actually, I know that our guest is is listening, even though if you're on YouTube, we you know uh her camera's off, but she's coming on in a minute. And uh I actually really needed to hear those words tonight because I'm not gonna lie, I've had a tough day with my son. And uh, and you know, both of you offered to chat with me today, but I was doing a radio shift for eight hours, distracting myself, which is a very good thing. But I have to tell you that, and I only I share this in the this, I'm not gonna make this episode about me, but I want our listeners to know that we aren't all coasting all the time. We're not like through it and life is peachy keen now. It's a as our uh as Kylie will attest with her story, it's it's up, it's down, it's you're sad, you're not sad. There's the emotions keep coming because there is no timetable for recovery. And so my son, after after his COVID relapse, and he's been living in a group home for two years and had a disappointment where he got a job and he didn't disclose and he didn't keep the job. I feel like he's lost hope. And we had a great day with him Sunday. So if it were the Zen, I I would and do treasure that day, but he was talking about they might be moving him to another group home, which he said he was excited about, but I think inside he's feeling hopeless and I don't know how to help him. He was talking about in order to transport his clothing, he needs a camping backpack. And I'm like, uh what? So I knew something was up. So now his plan is to leave the group home and rough it, as he says. And I am powerless to help him, and he's using again. So this, I don't know what's going to happen. Tune to the next episode to see what happens. So it's been a day for me of uh trying to manage my own feelings, trying to just deal with crashing again. And my heart breaks for him. I'm mad at him. How can he do this? After two years, he was just about to move up. But it seems like every time he gets an opportunity to better his situation, he sabotages. So that's kind of like what's going on with us. And if you're listening, and I guess you are since you're here, we don't have all the answers. We just do our best to refind the answers when we need to, and crises keep on coming, like uh, like a batting practice.

SPEAKER_03 7:14

It's true, it's like it isn't over, and people shouldn't think for us that it is either. You know, last night one of the questions to me was when did you finally and for once and for all, let go of your guilt that somehow this was your fault? And I said, I'll let you know.

SPEAKER_01 7:34

Yeah, and and I think our guest will be in there too. So, Mindy, when you said to me today that you're that Jim was going winter camping, I thought, oh no, he's gonna go out and rough it too. But you actually meant really winter camping, like for real, like for fun, which is great.

SPEAKER_02 7:50

Yes. Um, so yes, and I'm sorry too. I just I feel guilt when um Jim isn't doing well, and I actually feel guilt when he is doing well when I'm with people whose children aren't doing well. So I feel guilt now. But Jim is actually having a really good time. I'm glad. I mean, for people who don't know, we live in Minnesota. We've got uh lots and lots of snow on the ground. We've got about a foot on the roof of our house, and this is what he enjoys. He went in December and he's there today through Thursday, and he just lives to camp in the summer any time of year. But he went to school in Montana where he would go camping when there was even more snow than here. So I think it's um, you know, I think often when people have schizophrenia, they remember when they were happiest. And when he was happiest was when he was in Montana going to school, and he got to do a lot of camping and skiing and hiking, and that's what he's doing now.

SPEAKER_01 8:51

Well, actually, don't feel guilty because I want to tell you that gives me hope to hear that that your son is doing something that deliberately and realistically is going to make him happy. My son, uh I don't even know what he is. He's planning to to have a friend pick him up and sleep in illegally. I know he's might get arrested. Anyway, so that's what's going on with us. However, we're this is the middle of our story, and it's the middle of our guest story. And if you're watching on YouTube, I want you to see this book. I have so many post-it notes in here and so many markings. This is called The Perfect Other, and and Mindy's got her copy as well. So I was struck by so many things in this book, and I wish my sister gets better. That was part of our guests' yearly birthday wishes, and more often too. And you know, our daughters have probably made that same wish. Um, our guest won the New York Times Modern Love College essay contest in 2019 for an essay that she wrote about grieving her sister Kate, and now it's a book. She'll tell us all about it. Um, Kate Letty sounds like she was an amazing sister, and I kept thinking of the loss. Well, you'll hear all about it. So Kate developed schizophrenia, and her little sister is here to help her legacy live on as best she can. So please welcome Kylie Letty. There she is. Thank you.

SPEAKER_00 10:25

And thank you for sharing all that. You know, I was listening to that whole story with both you, Randy, and also Miriam. And, you know, it just reminds me of why I wrote this book. And, you know, I'm just really honored to be speaking with all three of you and all the work you're doing while you're actively battling this huge, big, scary thing, and also trying to find out answers and empathy of other people. So a lot of moderation over here.

SPEAKER_01 10:49

Thank you. I almost thought, oh, we should have invited her mom on the podcast too. So maybe another time because I know you write so beautifully about her. So um, Kirkus Reviews, which is a big, a biggie reviewer, said Letty seeks courageously to break the stigma and silence that still surrounds schizophrenia and similar disorders, while also paying tribute to the woman whose life so profoundly transformed her own, a moving and deeply felt memoir about family and mental illness. And through it all, your love for your sister Caitlin shines through. So before we could give you three hours to tell your story, but they'd have to read the books, or we'll get an abbreviated somewhat version. But I always like to start with this question. Before you tell us your story, what do you most want us to know to get from your story?

SPEAKER_00 11:47

Yeah, that's a great question. I think I'm in an ideal world, I want families to come away with hope. And unfortunately, our story had a very tragic ending. So when I was writing the book, I really was trying to like struggle against the reality of what happened to us and also trying to find something to leave families with. Like I didn't want it to make people feel more hopeless. And I also wanted really just to try to combat stigma, like you know, all of you are doing, and show that mental illness can happen to anybody anytime. And, you know, like my sister was this beautiful, outgoing, popular, smart person who had on the outside everything in the world you could want. And we did have a lot of privileges and resources other families don't have, and just how that still wasn't enough, and that it can come at any point to anybody, and there's no reason for stigma because it just it just encourages fear and it you know discourages people from helping and trying to find solutions to these problems.

SPEAKER_01 12:46

You you talk a lot in your book about you weave in facts and research, but I would say it's a 90% story and and your feelings, but but the the research that you did and the facts that you came up with echo a lot of what we cover here in this podcast, how how schizophrenia is a brain illness, and there's so much information to talk about how the system can change. But let's go back to Kate. Tell us about her. She's your big sister. Um tell us what she was like before.

SPEAKER_00 13:24

Yeah, we um have a six-year age gap. So I write in the book that I was born a little sister and that my sister used to go to church and she would pray for me, and she really wanted a little sister she could dress up like a doll and take with her. Um, and just that she really like from the beginning was so excited to have a sibling and that she really for me was almost like a second mom in some ways because she was older and she could, you know, take me with her. And she, I was always like, you know, tagging along with her and her friends, and she was never sick of that. She was very patient with me. I was invited every birthday party. I was included with her friends at sleepovers and this and that. And, you know, she really was just this like really larger than life figure for me that taught me so much. And I know I in my daily life, even now at 26, I still think about her and I like pick out a shirt in the morning. I think about like what you know, what her style was like, or like the makeup tips she passed down to me and just all those little like sisterly elements that I still come, you know, I still hold on to. And even though she unfortunately did pass away when she was 22, I think not 26 now, and I'm kind of surpassing her age. She will always feel like this big sister to me. You know, I think I will always secretly want her approval and I will want to hear her opinion even now.

SPEAKER_02 14:45

I feel like when I read your book, that you are wise beyond your years. You know, you're 26, and you know, my my children are in their 40s. And I just think that going through something like this with your sister, you know, her changes, her developing this illness, and then and her her death, you know, just you still look like 26. You look very beautiful and young for those who are watching us or listening to us on the podcast. But the way you write, and now the way you're talking to your wise beyond your years. And I thought when I first started reading, you know, she's so young, you know, how could she possibly tell me, you know, um how this feels and everything? But there were so many passages that I felt were, you know, just right on for exactly how how I feel, even though my son is living. And one of them, I'll just take one, and I'm sure Randy and Mimi have many questions and comments too. But one of them is one that everybody doesn't experience, but you did with your sister and I did with my son. And that is, you know, you make the point at one point. You said um, people with mental illnesses aren't any more violent than anybody else, you know, in the general population. And I'm thinking to myself, you know, as I'm thinking of the damage to our home and how terrified we were at times of Jim. Okay, this is definitely going to be naive here now then. But as the book wore on, and in fact, right in the very end of that same paragraph, you were saying, but Kate is getting more aggressive. And then at one point, you talked about uh being afraid of her, and then you talked about one of your fears was that she would kill your parents. And that is a fear that my daughter had, and she was had such a fear about that that she couldn't even be sympathetic with her brother. She was just worried about us, her parents, and that he would kill us and he would be in prison, and then she'd have no parents and she'd be stuck with him. You seem to keep um your love for your sister in the forefront at the same time. You handled this fear for your parents, but love for your sister in balance. Could you comment on that or talk about that a little bit? I thought that was probably the most poignant part of your book or me, given it was so parallel.

SPEAKER_00 17:20

Yeah, no, that's a really good point to bring up too. I think, yeah, I think I really wanted to mention that statistics in the beginning because I wanted to kind of, you know, show that I don't want to increase stigma by saying, like, you know, people mental illness, someone to be feared, or you know, someone with schizophrenia should be someone you're afraid of. But at the same time, I wanted to share my reality, which was that my sister was violent. And we also had a really serious traumatic brain injury, which, you know, is also known to increase violence. I wasn't even sure like where I can even tie the dots to or what kind of big, broader connection I can make. So I just thought all I can really share is my personal experience here. And if someone relates to it, they don't, like that's just what we went through, and that's that. So I do appreciate you bringing that up. Um, but yeah, I think there were definitely moments where I felt like I really had to start walling myself off from my sister in a way and try to come to like because she also was struggling with mood disorders and these swings where she'd be one second telling me how much she loved me and I was her favorite person in the world, and these flowery, amazing text messages or little notes she left me. And the next second she'd be telling me she was going to try to kill me, and or you know, she would, or she hated me. And it was just these on a dime, it could switch. And I think as like a I guess trauma tactic, I think I had to kind of get a little numb to it in a way and like stop letting her in in those moments when she was herself. I kind of kept her at arm's length still in my head. And that's something that I struggle with even now, which is like the guilt of that as well, because I like was so like frustrated and angry at times. I mean, I talk about a scene in the book where I at one point had a cop tell me I shouldn't say the word crazy, which is absolutely true. Like, is a really good cop to say that. Not all cops are like that. He was very great. And the time I was like, I remember just screaming at my sister and being like, Stop acting this way, you're acting crazy. Because I was little and I was also scared. And, you know, I think those are the moments that like of me showing those not great size, the ways I didn't handle it correctly, that I I want to also kind of humanize the experience of being confused and being scared because it is really hard to care for somebody when they are suffering so much, but they are also inflicting suffering onto you.

SPEAKER_02 19:38

That's very well said. Thank you. I think when we don't share stories like that, then those of us who are experiencing them, even within the world of mental illness, feel isolated. So thank you for that.

SPEAKER_03 19:51

Yeah, I have to say, uh, in my book, um I don't paint a very pretty picture of myself a lot, but I made that same decision. I decided I'm gonna just tell my story. And the feedback that I've gotten is it's been very encouraging and freeing for other mothers because how can we possibly deal with this well at all, or certainly not all the time. It's an unknowable thing, and so we need to give ourselves and each other permission to just do the best that we can because there's nobody who knows most of the answers with this.

SPEAKER_00 20:36

Right, yeah, and the guilt on the mothers. I mean, first ones get blamed, first people have everything.

SPEAKER_01 20:41

Yeah, uh, but you know, let's still let's stick with you and siblings though, because you know, we present the mothers for you every episode. But uh so my daughter, like you, is a little sister, but only three years. My min um Mimi has three girls, right? Three, Mimi. She has three daughters, so she knows the sister dynamic. And I never had a sister, and my daughter didn't have a sister in this country, but I have two grandchildren, and I see how the little sister live looks up to the big sister. And sisters, little sisters have told me I have spent my entire life trying to live up to being my big sister, and so it sounds like you had that dynamic in spades because she wanted you so much and included you so much, and you played together and she wanted you, and you know, and then you're one and she's six or seven, that's one dynamic, but you're seven and she's like 12 or 13, that's another dynamic, even without schizophrenia, when suddenly the big sister who included you everywhere now she's too cool for school, right? So, but on top of that, she started to have mood swings. Which they all do in adolescence, but um behavior in school that was embarrassing to the family, and then she had that concussion later on. And so in your book, she likes she went to the hospital a lot, she was on Risperdol injections for a while. Did she ever under medical treatment get to be a little? Did she ever come back a little bit to the sister you knew, or did none of the treatments ever work?

SPEAKER_00 22:29

Yeah, there are definitely moments of clarity when I feel like she would come back to herself. And I do think the medicine definitely stabilized her, where she wasn't as violent or she wasn't as reactive. Um, but then I also think the medication she was on had some other side effects to her where she, I remember she described once she felt like she was like, I think she's like underwater or something. Like she felt like she was like kind of numb. She wasn't feeling the world the way she used to. So it was like she wasn't almost she almost felt like she was like sedated, I think. So it was like this like it's so it's just a really hard thing. I think for us, it was like the medication was a thousand percent better. There's no question about it, but it wasn't perfect. And I think there's like a reason why people struggle against it because it's it's not a perfect science. Yeah. We don't know. So I think definitely there are moments when I felt like she was coming back to herself, but they wouldn't last long enough for me to be able to trust them. And that was the heartbreaking part.

SPEAKER_01 23:23

So tell, you know, we've read your book. Um, but for someone who hasn't, so tell us what happened then. You know, I know she tried to go to college and tell us about the push-pull of her years before she died.

SPEAKER_00 23:36

Yeah, I was saying like her teenage years, adolescence, we saw some behavioral things happening, but nothing that was that concrete. I think everything could still kind of be like considered maybe normal teenage growing pains, or you know, maybe a little more than that, but still not clear. And then she was 18, went off to college, and she was a freshman, and she was out one night and she fell off like a stoop of brownstone, and she had a traumatic brain injury. Um, that was like there's bleeding in her brain, um, and she's put in a medically induced coma. And at that point, I was, I think, 12 at that point, and I remember the doctors telling us that she wasn't going to be the same when she woke up and that and she wasn't doing well. So there's a part of us that was like, oh, maybe this will be a good thing.

SPEAKER_01 24:27

Knock some sense into her. I think you I think you said you toyed with that.

SPEAKER_00 24:31

We all we all cling to hope. Okay. Yeah. There's you know, they had no idea what they meant by that exactly, but um, you know, I I was part of writing this book, I had to go back and look at medical records and really kind of map out timelines. So in that moment I saw like she wakes up from the head injury. A month later, she's kicked out of school and she's having like active hallucinations and delusions. I mean, it was like an immediate difference. Um, and it's hard to say what would have happened if that event hadn't occurred. Um, because those are those that's the age when things start kind of escalating anyway. So it's just really hard to really put these like causation effects on things, but it just got worse. Whatever was happening already, it just got 10 times worse because of the head injury, I think. So that's when she's already been like really having um active symptoms.

SPEAKER_02 25:18

My son had a skateboarding accident where he, you know, he thinks he had a traumatic brain injury, and who knows, you know, what could be the the cause and effect. And but he actually would hope that he had a traumatic brain injury sometimes, he says, instead of instead of schizophrenia, because there people can see, you know, it's not your fault, you didn't do anything, you got a physical damage, and and also um some of the housing that's available he's discovered here in Minnesota anyway, where TBI is better than anything that's available for people with schizophrenia.

SPEAKER_01 25:57

So yeah. What happened when she was 22?

SPEAKER_00 26:03

Um, so when she was 22, she committed suicide. Um, but we didn't really have a full answer for a while. She kind of just disappeared for a second. We weren't sure um right away, but we found out later on that she had jumped off the Benjamin Franklin Bridge in Philadelphia. Um, but we never recovered a body. So we never really got to have a formal funeral or like a really concrete grouping process.

SPEAKER_02 26:30

Sorry. Sounds really awful, you know. And um Pauline Boss, who wrote Ambiguous Loss, which you talk about in your book, lives right here in Minnesota. I quoted her in my book too. And that's by her measures, um, you know, the worst kind of grief where you just don't have all the answers and it's hard to get closure.

SPEAKER_00 26:53

Yeah, I think it's hard for me, at least, to stop the hope that something, you know, maybe a car came across the bridge and picked her up, or maybe something else happened and maybe she's still out there. So I think it took us a lot of years to really come to terms, like this is what happened, and you know, find peace in that.

SPEAKER_01 27:09

It's hard to not have closure though.

SPEAKER_02 27:12

Uh, you know, go ahead, Mindy. Oh, I was gonna say another um poignant moment that I found in your book, which is something I struggled with at times when my son had suicide attempts, but obviously didn't succeed. Um, but you, with your honesty and just you know, writing so beautifully and so honestly, you said at one point um that um something about you were almost a sense of relief with the ceasefire or something like that. I don't have it right in front of me. Um, I think that's a really honest emotion with all of us. There's one of my friends now dealing with her son, and she thought if he had his drug overdose had, you know, been more successful, so to speak, you know, that she would be done with all this. But I would think I don't have any experience like you do with your sister, of you know, you have those thoughts, but then you go on. Do they go away then and you feel more a sense of grief, or is it mixed even all these years later?

SPEAKER_00 28:17

Yeah, that's um definitely a part of the book where I really wanted to be honest, because you're like you're saying, it's not an easy thing to admit that you have some relief, but I don't know. I think I think it's still mixed for me. I think there's a part of me that doesn't feel like I mean, I think Kate chose to take her own life because she knew it was happening to her. She was very cognizant that you know she wasn't herself. And in the moments of clarity when she was more lucid and she did seem like she was her old self again, she was just saying what she didn't want to be like this and she didn't want to cause us pain and she didn't want to hurt us. And like that was so heartbreaking in itself that I don't wish that upon her still, that she would still be feeling that way. I wish she would was with me selfishly, and I wish more than anything else that the old kate was with me before she had to battle this and before she had this brain-based disorder that tortured her so much. But I don't know, I just struggle. I I wish, you know, I sometimes I look at different research where I like I hear an interesting, you know, new study or something comes out, and I'm like, oh my god, there's hope, and I'm like so excited. And then there's this part of me that's like, what if she just hung on like a little longer and we could have like done something more? But then I don't I don't know.

SPEAKER_01 29:23

You say in your book, in one of the many post-it notes here first of all, but I circled this being related to Kate made me someone. Like this was the little sister's worship of her big sister. She must have been amazing. Your sister must have been so amazing. And I know with my son, all our sons were and are, but it's through this veil of this illness. And but you're right here, yet so much of the tragedy of my sister's condition was our inability to understand what was happening. Maybe if we'd known, we could have supported her better, rallied around her, lifted her off the ground and up to the girl she was supposed to be all along. And I wrote in the margin family guilt because we always wondered what we could have, should have done, what we could have should have known, if only we'd known, if only the diagnosis had come sooner, what would we do? And I think especially with suicide, we carry this guilt. And you speak of your father, not so much though. You're he he never really quite understood that she had an illness. Is is he still alive, your dad?

SPEAKER_00 30:37

Yeah, he's still alive, but we don't really speak much, don't communicate much.

SPEAKER_01 30:41

So he kind of just totally knocked locked himself in an emotional room, and it's you and your mom, pretty much the the dynamic throughout the book. Um, we all hoped it was normal. We all hoped that they would grow out of it. So you're definitely not alone in that. We did an episode, I hope you'll listen to, where we interviewed our own daughters about their experiences. And yes, they lost the brother they thought they were going to have. And it's a different dynamic with a sister, I think. Um, but I remember my daughter saying, Well, I lost my big brother and I gained a little brother. And it's, you know, today I felt bad even telling her what her brother was doing because she's got her own kids to worry about and she's got her own life to worry about. And but she loves him and she's coming up with all these suggestions. Maybe, you know, she wants to help. You always wanted to help your sister, and there was a lot going on. So tell me how you and your mom are doing these days. Like I know you ended the book, you were 24 at the end of the book. So I know how long it takes to get a book published. So you've you've gone, you're in a couple of years and you're living in New York. How are you'll always miss your sister. I'm not asking about that. You'll always wonder, but you've outgrown her now by four years. And how are you doing? And how's your mom doing?

SPEAKER_00 32:02

I think we're doing okay. Um, I feel like my sister and I are in a very peaceful place, which some people might think that sounds weird, but I really do. I feel at peace with her and I feel at peace with the situation now, and I feel like I did my best. This book, I don't think there's ever enough that could be done. Um, but I do feel strongly that I think that her legacy has been honored, that you know, her life hopefully will help somebody else and that people will not forget her. And I think my mom and I are really trying to figure out this balance between how to move on and just focus on trying to be happy and you know, let go of some of that guilt and try to lighten up some of that grieving and enjoy life a bit, but also advocate still. And you know, I think when I talk to families who are actively going through this, I get messages like every day from somebody who's battling this in the moment with their child or their sibling. And there's this guilt for me too, where I'm like, these like you know, people are actively suffering so much and like nothing you do is enough. And you know, I don't know, I don't know how to help people enough that I'll ever feel totally satisfied. But I think the best way sometimes I can honor my sister is like to try to be happy and to try to keep living.

SPEAKER_02 33:23

That's that's really beautiful. I just want to say we did, we had the program with our daughters. Um, we have constantly, I think we've kind of given it up now, but we thought quite a bit at the beginning about having our husband's son. And we kind of came up against what you and your mom did with your dad. I don't think our husbands don't think our sons have a mental illness, but they also kind of leave the bulk of the battles to us. So that's maybe a common theme with with a lot of a lot of fathers and husbands.

SPEAKER_01 33:54

Or with if there's partners, one partner and the other partner. It isn't always, isn't always the dads.

SPEAKER_02 34:00

No, not at all. But but by and large, if you go to NAMI events and so forth, you're gonna find mostly women.

SPEAKER_01 34:07

So we have about five minutes, five, six minutes left. Mimi, you've been quiet. Anything you want to say or ask? I I in the last minute, I want to read your passage in your very last chapter about why your sister's life mattered and still matters, because that brought me so much hope, especially on this day when I feel like I've lost my son again. Like you lose them a thousand times. You get them back a little bit and then you go, okay, this is good enough. We made a good day, and then you lose them again. So that helped me. I want you to know that that last chapter helped me today. But Mimi, anything to add or say or ask?

SPEAKER_03 34:43

I'm wondering if writing the book brought you any piece, uh, sorted things out for you. Like, how did it change your psyche or your processing of the whole experience?

SPEAKER_00 34:58

Yeah, you know, it's funny. When I was writing the book, people would say to me, like, oh, this must be so therapeutic for you. And I'm being so angry at that. No, it's not. It's like, it's not spitting your guts out. Go ahead. No, exactly. This is very validating. Um I was like 22 and I was like, just like it was killing me to relive it all. And I thought I had gone to a point where I was finally moving on. And then I got this New York Times contest, and I had this huge platform suddenly, and I could like have a voice out there. And the first thing I wanted to say was, like, this is what's going on. America, wake up. But then I so I felt this like huge, huge like drive and this like desire to do this, but at the same time, it was like crushing me. It was so hard to go back in that headspace and relive it. And then also connect the dots and see what I missed the first time and all that regret was just like seeping in. So in the moment, sucked. But afterwards, I I really have felt like it has been healing for me in a way. Um, part of it is just like I feel like a sense of relief that I got the story out there. I'm not like hiding stigma anymore. I'm not feeling ashamed. It's still something I battle. Like I talk to someone and they say, you know, I read your book or I listened to your audio book, which is me reading it. So that's more vulnerable. You know, and I'm like, I like kind of bristle against that. I'm like, oh my gosh, I feel so exposed and I'm so scared. And um, so I'm still definitely like navigating that feeling. But in the end, I really do think that I don't know if I could have moved on if I hadn't just tried to do something with this. And and I think the book has helped me, and I hope it helps somebody else too.

SPEAKER_01 36:32

I always I think the siblings are often ignored in in the family loss. Do you think so? That people don't think about the sibling loss.

SPEAKER_00 36:44

Yeah, I don't even know. My mom read the book and she was like, I had no idea you felt this way. And I was like, What? I don't know if she like even fully processed how much love I have for my sister and how much responsibility I took for it, because she has a mother's guild, a parent's guilt. Um, I don't have that, but I think she didn't realize how much blame I was like putting on myself until she read the book and realized that we had a lot of similar feelings about the situations. Um, and I also think that I was very lucky though, in the fact that my mom was really cognizant when my sister was struggling to pay attention to me still and to really celebrate my accomplishments. And like if I got a good grade in a paper in school or I like succeeded in a sports event, like everything, there was a lot of tension on me still. And I think she was like really um just really wise to do that because I didn't feel like I had to like act up to get attention or, you know, I always felt like I had my own support system. So I'm very grateful to her for that.

SPEAKER_02 37:41

You must have an amazing mom. I I don't feel like I did quite such a good job as as she did. There was one time my sister or my daughter had um surgery. It wasn't, you know, some uh she had her thyroid eradicated, it wasn't a huge surgery, but on the other hand, it changed her life in terms of having to take medication all her life. She didn't tell us parents because she knew we had so much on our plate, she didn't want to bother us. So I I constantly feel bad about that.

SPEAKER_00 38:11

Yeah, the perfectionistic thing I definitely got. I was like type A. But I'm I'm telling my mom, if she heard me saying that about her, she would get on here and she would scream and tell me all the things she messed up and everything she did wrong. So do not think that she would think that. Um, but I'm sure your daughter feels the same way about you that I feel about my mom and is very grateful.

SPEAKER_01 38:29

Yeah, you know, part of you wants to protect one child and then help the other one. As sometimes those are at counter purposes. I'm gonna say two things to you that I hope are validating to you. One is people always ask me about my book. Was it cathartic? And I'm like, no, it was like the worst. I still have nightmares about term papers having to be due. It was like the worst term paper I ever had to write because you do, you have to do your research and find the science that backs it up and then go back into your records and find out what happened when it was a lot of research. And I constantly had to remind myself I was writing it for other people, not for me. I was writing it to help other people. And the other thing I want to say to you, because I know you struggle, feel like I know you now from having read your book, but that you struggle with the answer. Are do you have a sister? And I know that my daughter, when there was a time we thought my my son might have died. This was a couple of decades ago, or that he might because he was wandering homeless somewhere. And she said to me, I don't want to be an only child. And I said, You will never be an only child because you were raised with a sibling. And when you're raised with a sibling, you can you can never, whether they're here or not anymore, you will always be a sister. That's what I think, because you were raised as a sister. So she's with you, and that foundation of that experience of growing up, sharing your parents with with someone else like that. That's inside you, and you will always be a sister.

SPEAKER_00 40:05

Oh, thank you. That's so beautiful. I really appreciate that. You're welcome. It's um it's an interesting coincidence. I am like finishing a project right now about that question. Um, I've had to answer that. It was it's an independent piece that's coming out on Friday with the New York Times. Oh, it's coming out on Friday. Oh wow.

SPEAKER_02 40:22

So I'm not sure how to do that. Did you come up with a term? You said in the book you were, you know, orphan if or you know, if you are your widow or widower, but there was no word for you know lost their sibling. Did you come up with one for this New York Times article?

SPEAKER_00 40:38

I didn't. I failed with it. I talked to like a bunch of linguistics professors and different people and grieving experts and just on why there isn't a term for it. And I think um, I think there should be. You know, I think for me, like I kind of feel like I answer that question now, um, just saying, like, I am a sister. I I have a little I have a sister, I am a little sister. Um, and just saying the present tense. And then if people ask more questions, I tell them the full story, um, as comfortable as I feel, you know, to do so. But yeah, there's not, it's not easy to answer these things. And it's also like you said earlier, there's other ways to lose somebody besides, you know, death. And I think I lost my sister in a lot of ways and I grieved her in a lot of ways before she actually passed away. And that question was kind of always complicated for me in a sense. So yeah, yeah, we totally get that.

SPEAKER_01 41:29

So I know that I I struggle with what kind of legacy my son's life will leave because of what he could have been, thought what I thought he was going to be. And we've all tried to try it. I don't like the word tried. We all are constantly working on finding on appreciating the value of our sons the way they are. Would you say that's accurate? Three months. Yes. So an experience that you had near the end of the book was after your article came out, suddenly people were like, I knew Kate, I knew Kate, I remember this about her, and that you realized the ripples of her life that her life did matter. And you write, okay, I might cry. I'm gonna try not to. Kate loved butterflies. So now I think back to the butterfly effect and the ripples of her life that I will never know. My sister mattered, like everyone in this world matters, whether or not there are books written or buildings named. The notion that we're capable of changing the world is arrogant and obvious. Of course, we change every life we meet, just not always in the grand gestures we expect. So that is so beautifully put. And it helps me to remember that the moment, whatever whenever we have a good day with my son, I just say I'm grateful we made some good new memories because the ripple effect of tickling his nieces and nephews, playing video games with them. Like his life does matter. It may not matter in the way I hoped it would when he was born, but I I like to hold on to the the fact that his life does matter and just hang on to that zen, Mimi. Any last words from anybody or any uh oh, Kylie, how do we get in touch with you? Tell us the name of the book again and where it's available. Anything else, anything else you want to tell us?

SPEAKER_00 43:27

Yeah, I think my my last point I want to make before I get into that is just um I just again I just want to honor just like how amazing the three of you are and how much amazing work you are doing. And I had sent my mom all of your books before this and told her the podcast I was going on. And we were just talking about how impressed you are because you know, when we were going through this, we were in that you know, day-to-day chaos, there's just no way we could have done something like this. So thank you all. I think it's really just beautiful and important work. Um, and then what was my question? I just say my book title. It's the perfect other, a memoir of my sister. And my name is Kylie Leti. Um, it can be found at hopefully most bookstores, definitely Barnes and Noble and on Amazon. Um, and I have my website is Kyleti.com. And say what's so my Instagram, so is everything else. It's all my name. It's a weird spelling. It's K-Y-L-E I-G-H.

SPEAKER_01 44:22

I know that feeling. And your sister's was uh also had the Y in there and the K at the beginning, so it match. I I love that. Spell your sister's name for us.

SPEAKER_00 44:32

K-A-I-T-L-Y-N. So yeah, we definitely have the L the Y in there. My mom did not make it easy for either of us in preschool, but I like it all.

SPEAKER_01 44:42

Well, you're in good company. Kylie, it's been such such a pleasure to talk with you and get to meet you. And you can go to Kylie Letty.com. Yep. Though those links will be in the show notes. I'll also stick them up on the YouTube and a you know, little text box. And thank you so much for joining. I wish you, I wish you love and that your sister continues, that your good memories of your sister continue to enrich your life.

SPEAKER_00 45:12

Oh, thank you all so much. It was really thank you. Thanks for being here. Thank you.

SPEAKER_01 45:17

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, 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 randyk.com.