Terrible, Thanks for Asking

Don't You Want Somebody to Take Care of You? - Transcript

This is a transcript of a “Terrible, Thanks for Asking” episode entitled, “Don’t You Want Somebody to Take Care of You?” The text may not be in its final form and may be updated or revised in the future for accuracy.

Listen to the episode here.


——————



Nora: OK, so Gina, I've just got a couple of questions. We're just going to get into it. Is that OK? 

Gina: Yeah, totally. 


I’m Nora McInerny, and this is “Terrible, Thanks for Asking.” 

That was Gina, and when we get into it, we’re going to be continuing the conversation that we’ve been having about care with Gina’s story. It’s a story about a lot of complicated emotions, about the long-tail effects of being thrust into a caregiver role when you’re still a person who needs a lot of care: a child. 

But this complicated story starts in a really simple place — when Gina’s parents met and fell in love.


Gina: They were a summer fling. It was like, maybe 1969, 1970. Vietnam War was going on. I think there was like a lot of looking for a better life, like, you know, like wanting something good. And they dated, you know, over that summer. And then they were married by like the day after Christmas, that same year. So my sense is that they were kind of idealists, like they were like, looking for some sort of happily ever after. 


And for a while, Gina’s parents found it. 


Gina: My mom was a homemaker, and my dad was kind of a rising star in the computer science world. He was an academic. He was teaching at Georgia Tech in Atlanta, which is where I grew up. And so, early memories are that my mom cooked and was crafty and, you know, volunteered with the PTA. My mom really loved to sew. She loved to bake. She was a beautiful woman. And my dad was very intellectual, like I remember him reading, like, not totally age-appropriate books to me when I was young. Like he read Alice in Wonderland to me at an age when I didn't fully understand what was going on. There's so much in that book that I didn't understand, but I loved the fact that he would read that to me, and he would sit down and explain to me how telephones work. And he liked, you know, teaching me about prime numbers and stuff like that at a very young age. 

I think he just really enjoyed sharing that aspect of himself with me. He liked kind of dissecting things and thinking about things and asking questions, and that's something that I've carried with me into adulthood. He kind of taught me how to dig deep and think about stuff that you might not otherwise think about. 


Gina was the second of three children. Her older brother is named Alan.


Gina: He just was like a sweet, sweet kid. He loved playing with Matchbox cars. And he would line them up. We would watch movies a lot together, like he loved watching “Lassie” and “Old Yeller,” and he could watch stuff like that, if it involved a kid and a dog, he could watch a movie, you know, five times in a row, if my mom let him and every single time he saw it, he would laugh at every part like it was the first time he ever heard it or ever saw it. And same with music. You know, at some point in our childhood, somebody gave them like one of those yellow Sony Walkman and a bunch of tapes. And he would walk around the house with headphones on and playing his tapes and singing in his very loud, very slurred speech. And that was like the happiest he could ever be. 


Alan loved country music. Bing Crosby. And he loved Christmas music, all year round. It was just Gina and Alan, until their little brother Andrew was born.


Gina: Andrew came along and I felt like… almost like he was my baby from the beginning and like I think I recognized from a young age that he was like my ally and my playmate. He was, you know, a playmate that I interacted with, like he was very imaginative and we’d do the things that kids do where you like, line up all your stuffed animals and teach them school, or we would do these like toy parades down the hallway and like throughout the whole house where we were just like line up every single toy we own, and then just like march them to like... I don't know. It was a production.


Gina’s relationships with Andrew and Alan were different, because Alan and Andrew were very different. 


Gina: I was aware from a very, very young age that I could do things that Alan couldn't. I was three years younger than him. He and I kind of learned how to walk around the same time. He could talk, but his speech was really slurred. And so I knew from a very young age that, like, a lot of people didn't understand what he was saying. But I did. Like I kind of interpreted for him a lot, especially in public. So I think there was an awareness on that level. Like, he's older than me, but I think I always felt older than him. Like I knew that he had a lot of medical stuff that was very mysterious, like he had some seizures and would have to be rushed to the hospital. So I was very aware that he needed a lot. And there was something wrong. I would say that I probably could say from a very young age that there's something wrong with Alan. But in terms of like knowing what that was or... you know, having any sort of context for it, it wasn't until much later. 


It’s not just Gina who is missing context. It’s her parents, too. It’s Alan’s doctors. Because it was the 1980s, and nobody really knew what made Alan different. 


Gina: The way I was told is that he was born breech, with the cord wrapped around his neck. And so my mom had always said that he was a really floppy baby. Like, that's the word that she used. He was really floppy when he was born, and he didn't cry very much. And so at the time, like the doctors all knew something was wrong, like I think almost immediately, if not immediately, like they knew something was going on. I think they thought it had to do with, like maybe he lost oxygen, like he had some brain damage. But there wasn't like, you know... any sort of telltale characteristics, like, you know, like somebody who has Down syndrome, you know, like there's characteristics that might point you to something like that. There was none of that. So like my earliest memories, doctors would use the term “mentally retarded” or “brain damaged.” Like that was the language that they used. That's what teachers would say. And so that was the only context we had, is like, oh, he has brain damage. Like, I think people would say he's handicapped or he's disabled. But I think part of what was really hard for my parents is that there wasn't, like, a diagnosis. There's no book to look at to say, oh, this is what you can expect from him developmentally. You know, these are his milestones. There was none of that. It just all I think probably felt like a huge mystery to them. 


That's how people talked about Alan around Gina when they were kids. Not all of those things are things we'd say today. Like the R word. We don't say that. But Alan was different. 

So in the meantime, Gina and her family are just doing their best, living in suburban Atlanta. And we’re talking about the house layout… because the house layout that Gina grew up in is important to the story, I promise. 


Gina: So you walk in the front door. And there was like a formal living room, which I'm not sure how many people have anymore. But there was like the room that the kids weren't allowed in, you know, with the, like, Ethan Alan furniture and the cream-colored carpet that we weren't really supposed to walk on and a huge front picture window. And then to the left, there's like four stairs going up to my bedroom, the master bedroom, and then my younger brother Andrew was up on that level, too. And there was a bathroom that the kids all shared, and then the master had its own. And then, you know, coming in the front door, if you didn't go upstairs, then you walked in and it was like a den which had like the orange shag carpet, it was like the room that you could hang out in. We had a color TV that was like in of those huge... I don't even know what you call it. It's like not a media cabinet because that wasn't a thing yet. But...

Nora: It's like the TV is furniture. 

Gina: Yes. 

Nora: Oh, God, that's so fancy. I wanted that so bad. It's like you are describing the kind of house where as a kid, I'd walk in and be like, “You are rich, like, TV is furniture. You've got a split level. You've got two living rooms! Like what don't you have?”


The split-level house — a representation of the suburban American dream. For listeners who don’t know, a split-level house means you walk in, there’s a little platform entry. You can go up, or down to a lower level that’s not quite a basement. 


Gina: You're always aware of what is going on in the house. I just felt like you could always hear everything that was happening. So if my mom was not doing well, I could hear it. If my parents were fighting, before my dad left, like everybody in the house, there was nowhere they could go to, like, you know, protect us from that. 


And even though her parents’ marriage had started out with so much hope… there was a lot to overhear. Gina’s mom struggles with severe depression that wasn’t diagnosed or treated at the time.


Gina: And what I observed from a young age is just that she would be fine. You know, she'd bake or play music, you know, she'd be, I think, pretty happy. And then she would sink into kind of a dark place. You know, my dad would leave for work. He was working long hours and really, really ambitious. And she would kind of stay in her pajamas or stay in bed and kind of leave my brothers and I to kind of fend for ourselves. And then, you know, shortly before my dad was due home, she would suddenly, like, come out of the bedroom, like, fully made up and, like, ready for the day, you know? And... like I think it felt very confusing and very overwhelming. Like now I'm thinking like, oh, she was like really just trying to keep shit together and not maybe let my dad know how much she was struggling. 


But Mom was struggling, with her depression, with raising Alan... and Mom and Dad also fought a lot, and by the time Gina was 5, they were separated.


Gina: I remember being the kid with the divorced parents. I remember that being part of my vocabulary in kindergarten. Like the first memory I have of, like, really understanding, I just remember being in my bedroom. I was supposed to be in bed, or I was in bed maybe, but I wasn't asleep. And I just remember hearing this noise and coming, like, kind of creeping down the hallway and sitting at the base of the stairs where I could see all the way across into the kitchen, and my mom was just in a heap on the linoleum floor. And she was sobbing, and she was kind of... like the sound that I heard was her sobbing and I heard her kind of murmuring to herself that she just couldn't do it anymore. “I just want to die. I can't do this.” Just a lot of like over and over again. “I can't do this. I just want to die. I just want to die.”

And I think as a 6-year-old like... I think I was terrified by that. I think I thought maybe if she said she was going to die, if she wanted to die, she was going to melt into the linoleum floor and disappear. You know, like I thought that's.. she's going to will it to happen, and that means she's going to die. And I think on some level, I also knew that there wasn't room for me to feel that? Like to feel terror or to feel sadness about that. So I think for me that that kind of feels like the point at which I was like, OK. Well, it's up to me, you know? Like if she can't do it, then I guess I'll do it. 


We’re going to take a quick break.





We’re back. And Gina has overheard her mother weeping, saying she just can’t do it anymore. And Gina decides, “Okay, then I’ll do it.”


Gina: It meant... you know, trying to keep my brothers out of her hair, like I feel like out of her hair was something that she always said, like, “I need you kids out of my hair.” But I feel like I kept my brothers occupied and entertained. I, you know, cooked scrambled eggs for dinner, I helped bathe Alan, I tucked my brothers in and kissed them good night. I read to them. I mean, I think in the beginning, like, I feel like I probably enjoyed a little bit of it, like it was playing house. Like I can do some of these things. I can take care of things. And then as I got older it, the burden of it really, really started to take over.

I have this one memory, like around age 8, I think. I was in Girl Scouts at school, and my Girl Scout troop had this service project where we went over to this elderly woman's house and we were going to clean her whole house for her and, you know, at 8 years old, I think I was maybe in second grade. And so me and these other 8-year-old girls are, like, super excited to help. And the you know, the adults are trying to teach us how to use a vacuum cleaner, how to, you know... spray Pledge onto, you know, a coffee table and dust and all that kind of stuff, and I just remember, like, I already knew how to do that. Like I was like, oh, I know. Like, I can show you how to vacuum. I know how to turn it on. I know how to do this. I know how to dust the blinds. So at age 8, I already was doing those things to ease the burden on my mom. 


This is called parentification — when a child is forced into the role a parent would usually take. It’s also a serious loss. This is Gina losing a significant part of her childhood, which she spends taking care of other people. Not just by completing tasks, but by being good — making sure that she herself does not demonstrate any personal needs.


Gina: I also was a really good student, I think, because I was aware at a very young age that I needed to almost be the opposite of Alan. Alan had severe intellectual disabilities and severe developmental disabilities. And so I think in a lot of ways, whether I was aware of it or not, like my job was to be the opposite of him. Like if he had special needs, I had to have no needs. If he was very dependent on people, then I had to be very independent. 

My mom actually used to tell this story about the first time she dropped me off for kindergarten, there were so many kids that were like clinging to their parents legs and like, you know, didn't want their parents to leave them there and just felt so, like, scared about the whole thing. And my mom was like, “You know, you just you just walked right in and you turned around and you waved and you said, all right, see you later.” So I think, like, school was definitely a refuge for me. And it was also like my way to be easy, you know, like they didn't have to worry about me because I was going to do really, really well. 


But Gina — like all of us — can’t just DECIDE to not have needs. Instead, she’s just learned to mute them, to bypass them, to push them to the very back burner. She’s just a kid, but she’s acting like a partner to her mother and like a parent to her little brother and her big brother. And you’ve heard about Alan. He’s so sweet! But then he hits puberty.


Gina: And when he hit puberty, his behavior drastically changed. Now today, we know through genetic testing that he has something called Prader Willi syndrome. Back then we didn't know, we didn't have any context for it. But one of the hallmarks of Prader-Willi is... you know, violent mood swings, obsessive behavior, and then this insatiable appetite. Prader-Willi affects chromosome 15 and it affects... you know, the pituitary gland, like a lot of hormonal type stuff. So we actually know now that it's pretty common that people with Prader-Willi, when they get to puberty, start having some huge behavior problems. And so what that looked like for Alan was that he was always hungry. And my mom was a single mom, like we didn't always have a lot of food in the house. So that was problematic. So he would like, hunt for food in the trash. He would try to eat toothpaste or sugar or spices from the cabinet. And then because I was in charge, if I tried to stop him, he would just become very violent. You know, if I told him he couldn't eat from the trash, he might have grabbed me from the hair and like, throw me down on the ground or punched me or slam me into a wall. 

There was one time in the kitchen that he actually grabbed a steak knife and tried to stab me with it. I was able to move out of the way. But it was almost like... when you think of somebody who is abusive and there's a maliciousness behind it or like a premeditation or like, you know, like it wasn't… like I think even when I was a kid, I knew he didn't want to hurt me. Like, I knew that he was not in control of his body. 

I was terrified. But I also like, I loved him so much and I wanted to protect him so much that I was like... I wanted to save him from himself. So, like, I wasn't going to stop... you know, trying to keep him from eating from the tr- like, I didn't want him to eat from the trash. I was going to keep telling him that he couldn't do that, that it wasn't healthy or safe to do that. But then I would suffer the consequences of him, you know, lashing out at me or kicking or punching me in response. And then often what would happen ishe'd lash out like it was a very... almost involuntary reaction that he had and then he would see me either bleeding or crying, and then he would just... he would start crying and he'd be like, oh, you know, “I'm not mean to,” like he felt horrible, like it was not what he wanted. He just wanted the food.

Nora: How much of your childhood behaviors, your childhood thoughts and feelings were a response to being Alan's little sister?

Gina: I mean, I think almost all of it. So when I was born three years later, it was an emergency C-section, even though there was nothing unusual about the pregnancy. And I was like, put in the NICU for like a week, even though I was like almost nine pounds and healthy, like, you know, my mom said that the nurses loved having me there because they could actually, like, hold me. I wasn't fragile. And at some point they kind of pronounced me as, quote unquote, normal, you know, like they just kind of were like, oh, this one's going to be OK. And I kind of feel like that was my destiny from that point. Like, you know, I mean, I just kind of feel like, oh, like... she's going to be OK. And then it was like I had to be OK. 


Dad lived out of town at this point. He didn’t really know about the day-to-day of his kids’ lives. And mom…


Gina: I think she was living in fear. Like, you know, in public, she presented as being really well put together. She was kind of a perfectionist. She was very adamant that I never tell anybody about what things were like at home, like she didn't want my… my dad lived out of state most of my childhood. And so we saw him occasionally, but she didn't want me to tell him what was happening. There was this paradox because I feel like she was overburdened with her role as a single mom and parenting a high needs kid, and she would say that she wanted to die because she couldn't take it anymore. She didn't want to have kids anymore. But then she also had this fear that my dad would find out and that he would take us away from her. 


It’s a lot, and Gina KNOWS it’s a lot. Especially when she gets to high school. But there’s nothing she can do about it — Alan needs her, Andrew needs her, Mom needs her. But the more time Gina spends with friends at their homes, the more the unfairness of her own situation is highlighted.


Gina: I was watching my friends have experiences that I wasn't having, you know? Like they could go out on the weekends, because they didn't have people to take care of at home or they didn't have to work to help pay the bills at home and stuff like that. So I think my awareness of like, oh, this is not the situation I want to be in anymore was growing. But then the other thing that was happening is I was hanging out with friends more and I think my friends saw things. You know, they would see Alan's violence. They would see bruises on my body, you know? I don't remember how much I confided in them, I do think I had a couple of friends that I told some things to, but I was afraid if I told too much that my mom would kill herself, so I always felt like I was walking a line. But at some point, I think my friends maybe talked to one of my teachers. 

The school counseling office knew me, because there would be days that I would be late getting ready for school and my mom would be on her bathroom floor saying that she wanted to die. And I would worry, like if she doesn't get up, she's not going to go to work and she's going to get fired. Or like I just was worried that she would not be alive when I got home from school. And so I developed this routine where I would go ahead and get myself ready for school, make sure my brothers got out the door to school. Alan went to a special needs school. And then I would show up at my high school and I would duck into the counseling office and call one of my mom's friends and say, “Hey, can you take her out to lunch today? She's having a bad day. Can you check on her?” And then I would go about my day and, you know, I'd come home and she'd be alive. So there was that. 

And then, you know, I came to school one day and the school counselor said, “Hey, your teachers and friends are worried about you.” There was like, a county social worker who made the rounds, and she's like, “I want you to sit down and talk with her.” And so I had this meeting with the county social worker, and she... you know, asked me if I had any bruises on my body, and I showed her one bruise on my back, I didn't show her... you know, three other bruises that I had. At this point, I think I was maybe 15, so we just kind of sat down and talked and she asked me about Alan's violence. She asked me, you know, do I have a dad? Where is he? What do my days look like, am I getting enough to eat? You know, just kind of I guess I don't know what all the typical questions would be, but I just remember she was asking stuff along those lines.

And then at some point she said, have you ever been to the doctor for your injuries? And I said, no. And she's like, you've never been to the emergency room. And I said no. And she's like, and you have a dad. And I was like, yeah, you know, he lives in another state, but yes. And so at some point, she just kind of like put her pen down and she was like, “I think you need to go live with your dad, like I think you need to get out of there.” Which to me didn't feel like an option, because I felt like who's going to who's going to take care of my mom and Alan and Andrew if I leave? And also, like I kind of like it here. Like, I've got friends, I like school. I'm doing really well in school. 

So, you know, at that point, I thought it was kind of case closed, like, I certainly didn't tell the social worker everything that was happening. I didn't tell her about my mom's... how bad her depression was. I didn't tell her about all the, you know, the level of violence that Alan was capable of. But I think she also looked at me and saw a 15-year-old who was almost out anyway and had a path. So I thought that was the end of it, but then sometime after that, my school mandated that I go to therapy, like go to like six sessions of therapy. And I remember my mom getting notified of that and being furious. She didn't want me to spill all the secrets or to tell anybody how bad things were. 

One of the biggest blessings of my life is the therapist that I was paired with. The initial session, it was like my mom and I and my mom was like, “I don't know what's going on with her. You know, she seems really depressed. Yes, things are hard at home, but, you know,” she just was like, “I don't know what's going on. Maybe maybe she's on drugs. I don't know.” And then I remember the therapist saying, “OK, well, why don't you step out and we'll start talking.” And I remember being really afraid, like, you know, whose side is this therapist on? Like, what does she want to know and what would happen if I tell her things? 

So I did not tell the therapist everything. You know, we initially talked about school and what I wanted to study and did I want to go to college. What kind of bands did I like to listen to? Stuff like that. I think she kind of was just trying to get to know me. And then I would talk a little bit about Alan and just kind of steadily opened up a little bit more and a little bit more. But she was the kind of therapist who could see people, you know, like really intuitive, I don't know what it must have looked like for me to sit across from her, but like I feel like she got it, like without me having to say much. 

There was one session towards the end where, you know, she kind of looked at me and she said, “Your mom thinks you're exaggerating, your mom thinks you're exaggerating how bad things are at home.” And I was like, I am not and like in my mind, I'm like, oh, if you only knew, And I just said, I'm not, and the therapist said, “I know. She's like, I actually think things are harder than what you're telling me.” She's like, “I think your mom is really depressed. I think, you know, you're taking care of everyone and no one's taking care of you.” And she said, “Don't you want somebody to take care of you?” And I just started bawling, like I felt like that's all I wanted, like I wanted to, like, climb into the therapist lap and just, like, that's all I wanted. I wanted somebody to see me and take care of me. And that's not something that I got to have. 


We’re going to take a quick break.





We’re back, and Gina’s school has sent her to a therapist, and the therapist asked Gina a life-changing question: “Don’t you want somebody to take care of YOU?”

And yes. YES. That is exactly what Gina wants, what she has always wanted.


Gina: It was something where she basically relinquished me from responsibility. Like, I'm not the problem in a family, like the things that are happening at home are not my fault. And that was so freeing to me. But yet she also understood that my mom was hurting, you know. I don't think my mom was intentionally trying to make me miserable, but my mom is coming from a place of just such deep pain that she was not mothering me. And I think she understood that, you know, Alan's condition added a layer of complexity that no one could handle. And like, the most mentally healthy people would be struggling with dealing with Alan's intense needs. So yeah, I think the therapist got it. But then I think she also understood that she needed to plant some seeds and get me out of there. And so, like our last couple of sessions, she brought me college brochures and applications and like... she knew that I didn't want to leave the state and live with my dad, so she just kind of planted these seeds like what's your plan? How are you going to take care of yourself? Do you want to go to college someday? How are you going to get there? 

She made me believe that I could step away, that it was OK for me to leave, because I think there was, you know, another element of this was that if I started to think about leaving home, then I equated that with my dad leaving, you know, like I… I felt like I'd be abandoning the family in the same way that he did. And I think that some of that came from my mom, you know, like if I was spending too much time with friends, if I wanted to sleep over at someone else's house, she felt like I was abandoning the family. So I think it took a long time for me to understand that it was OK for me to leave. That by leaving home, I wasn't hurting my family, I was taking care of myself. 


Even if these decisions are painful for her family, she’s not doing it TO HURT HER FAMILY, she’s doing it to take care of herself. And as Gina makes these decisions, these small steps towards prioritizing herself and her needs, she’s given a big, big opportunity. She remembered something a friend had said one afternoon, as they were hanging out in her friend’s finished basement. This friend knew how hard things had been for Gina, and said to her, “Hey, you could always just live here.” Gina had filed away that conversation somewhere in her brain. And one night, things are really, really bad at home…


Gina: It's like I just, I had reached a breaking point. You know, my mom was screaming about something, like she just was manic and she just felt like, completely unhinged, and Alan was out of control and I think in my mind, it was almost like if I had this kind of love and fear dynamic with my family, I felt like the scale tipped to fear, and I just like hit a point where I was like, OK, I got to go, I got to go. And I left and, you know, my friend and her mom just kind of welcomed me in, there wasn't a lot of explaining I had to do. My friend's mom did make me call my dad. And tell him where I was, because she felt like she didn't want to participate in something where my parents didn't know where I… 

Nora: She's just like, I'm not trying to get charged for kidnaping.

Gina: Exactly. She's like, let's just... I need somebody to, like, give me a green light here. And so I called my dad. and I didn't talk to him very much. Like my dad when I did see him, it was wonderful. Like I loved my dad. I wish I had more of him in my life. But he wasn't there. He wasn't consistent. And so this was like a big phone call, like I had to call and let him know that I moved out and ask for his blessing for me to not have to go back home. And I just remember it was like one of those calls where like, you're crying so hard like, I don't know how he understood anything that I was saying, but I just said, I can't. I just I can't do it anymore. I just can't do it anymore. And I don't feel like I said much beyond that. Like, I just was like I had to get out. I couldn't... I can't do it anymore. I just can't do it. And he was like, OK, he's like, I understand. 


It’s not the same thing, though. Gina’s a kid, and her dad is an adult. Their leaving is NOT the same. That night, Gina spends the night at her friend’s house, knowing she doesn’t have to go back home in the morning.


Gina: It was like a mix, like it was freeing and it also was weird, like to be in a house where... there's food in the refrigerator, and I don't have to guard it from Alan, you know, overeating and making himself sick. There wasn't... it was a really quiet house, and that was, I think, initially kind of scary, like just very unfamiliar, like, oh. It took a while, like I you know, I lived there for... until I went off to college basically, and it took a while for me to kind of like... stop being so vigilant and to realize that, like, I don't have to, you know, I didn't have to take care of my friend's mom. I didn't have to take care of my friend, like she had her bedroom upstairs and I was in the basement. And so, like, we had this really wonderful, healthy boundary where, like, we would hang out and maybe do homework together. But then I could, like, retire to my room or she could retire to her room. So I got to be my own person. I got to come and go, you know, I had the same rules that she did, but her rules were a lot better than my rules had been at home. We were able to go to concerts together. Like I feel like I started to like, have glimpses of like, oh, like this is what teendom could be like like we're going to, you know, ska shows at these little grungy cigarette-smoke filled music halls in downtown Atlanta. And I just… part of me was like, this is great. 


And a part of her is feeling guilty. Because Alan and Andrew are still in that house. At school, Andrew will barely even look at her. Alan, at least, doesn’t understand that she’s left. This is the both/and of life — that by taking care of herself, Gina has vacated the role of caregiver for her siblings and her mother, Diane… a role that was never supposed to be hers in the first place. She didn’t apply for it. She didn’t ask for it. She was thrown into it at age 6. 


Gina: I felt like the more distance I gained from my family, the more I was moving towards the things I'd always feared. Like I was gaining independence and getting to know myself and taking care of myself. But the more independence I gained, the more I worried, like, oh, is Diane going to succumb to her depression and die? You know, is Alan going to hurt somebody in a really severe way? You know, is Andrew going to be protected? So I feel like there was always this, like, push, pull in my mind where I still felt very tied to them. But I knew I didn't really want to see my mom anymore. From the moment I moved out, I didn't really want to have a relationship with her anymore. And I think honestly that started, like my separation from her, my detachment from her, started like when I was 6 when she first said she wanted to die. I think there was a part of me that was like, OK, well… almost like I started grieving her at that point. So like I felt worried about her physical safety and her depression, but I didn't miss her, because I don't think I ever felt like she was my mom. You know?


I’ve said it before and I’ll say it again. I’ll say it a million times if I have to: Grief needs a rebrand. Something like grief: so much more than just death! Because there is so much grief in Gina’s story, and so much loss. It’s the divorce, it’s her mother’s depression, it's knowing her brother, who hurts her, doesn’t WANT to hurt her. It’s leaving her family home and moving in with her friend’s family. It’s going to college and not having her own mother there to move her in.


Because Gina does get where her high school therapist told her she could get She gets out of that house, she gets to college. And she’s now a hundred miles away from her mom.


Gina: We talked occasionally, like, on school breaks in college, like, I would stop by and see everybody. And so I feel like we kind of had a surface level relationship. But she called me desperate one time because he had been been placed in a group home and she kind of thought like, OK, like he's going to be taken care of. And he was kicked out, like within, gosh, I want to stay within a few weeks. And she suddenly had no other options for him. And so she called me at college and asked me to take time off of school, to drop out temporarily and come home and care for him. And she offered to pay me, which was kind of ridiculous because I don't think she even really had the money to do that. But I just remember, like, feeling... like I was at a point where I'd been away from home enough time that I had let my guard down, you know? Like I wasn't that vigilant anymore. And I like I was living my best life, like I loved college. Like the freedom, like all of it. It felt like the phone call kind of sideswiped me and I was like, what's going to happen if I say no to this? What's going to happen? What's going to happen to Alan? What's going to happen to her? Like it was like all that old familiar obligation and fear that I had for them just came flooding back. And I remember like, getting off the phone with her as quickly as I could. And I actually looked up the number and called that same therapist that I saw in high school. And I was like, I don't know, like, what do I do, what do I do? And she was like, “You say no.”


You say no. It’s that simple, like being asked, “Don’t you want somebody to take care of you?” You just say no.

Gina just says no. She doesn’t move back home to take care of Alan. And that no, that no opens up a whole world of possibilities for Gina. 

Gina’s mom ends up getting remarried. Alan is moved into another group home. Gina stays in college, and she falls in love. 


Gina: So he and I both moved to Colorado and got married out here. And then Alan got kicked out again from a group home, and so in looking around at options, my mom saw a lot of opportunities in Colorado near where my husband and I were living. Boulder has amazing resources, like to this day, like they have some of the best resources for special needs families, some of the best group homes, some of the best day programs and, like, respite care and stuff like that is a really robust program. So they moved up to Colorado, which happened to put them close to me and my husband. So at that point we did see them. I was really happy to be able to see Alan a lot more. But it came with, you know, kind of the weight of seeing my mom, who was definitely like, healthier than when I was a kid but still was suffering with a lot of depression.


Gina is a married adult. She has her own family. She’s changed a lot since that 6-year-old who found her mother crying on the kitchen floor begging for life to be over. But not everything has changed. 

Not even when Alan gets his diagnosis.

Prader-Willi is rare and even today is not always diagnosed in childhood. Learning about it did make it possible for Gina to understand more about what Alan was going through. And when Gina got the science of it, and got her own genetic testing, it made her more relieved. It validated a lot of what they knew about Alan and what could help him be safe and happy.

But. 

A diagnosis could not replace all those years that Gina was taking care of Alan and didn't know what he needed. It couldn't take him back in time and give him a better transition to adulthood.

Even if it could have done any of that? Gina believes it would not have changed things for her. Because of the caretaking role she had in her family. 

And when the diagnosis did come, it did not improve Gina's relationship with her mom.


Gina: The dynamic for me didn't feel all that much different. Like we would go over and visit. And you know, she would tell me all of her problems, she would, you know, try to lean on me emotionally around Alan, and how depressed and isolated she felt with him. She would, you know, ask us to take care of Alan, which at that point with my husband's help, like we actually did that quite a bit, like we would take Alan on hikes or to the movies. You know, we would take him on outings because we really enjoyed that. But he still had all the obsessive food seeking behavior, he still had a lot of medical things, you know, that made it really difficult. 

Nora: What was he like as an adult?

Gina: Honestly, he was a lot like he was as a kid. And that was like one of my favorite things about him, is he just had that, like, wide-eyed joy of a little kid who still believes in Santa and still lives for Christmas, like to the point where he was listening to Christmas music in the heat of summer. He was making his lists, you know, year round. He was still watching movies over and over and over again and reacting to them as if he'd never seen them before. So there's still kind of that unbridled joy. But he also, like as an adult, I felt like was a little more subdued. Like they had once, I think they found out that it was Prader-Willi syndrome and they understood some of the mechanisms behind his behavior, he started taking different medications that had kind of a sedative effect. And so there would be times that my husband and I would go over there, and he would be kind of sitting off by himself and not very responsive, because he had just taken a dose, my mother had just given him a dose of medication. So I feel like it smoothed out the edges like his. He was a lot less violent. His mood swings were a lot more even. But then the downside is, is it kind of took a little bit of a spark away too.


Gina isn’t solely responsible for Alan’s care anymore, but the issue of his care still weighs heavy on her. Alan is her big brother. She loves him. She wants to make sure he’s okay, no matter what. She’s been waiting for her mom to make a plan for Alan, for how Alan would be cared for in the event of their parents’ death.


Gina: I assumed that he would outlive her. And I knew from having grown up, like I knew that I couldn't do it, especially after I had kids like I, I knew that I was not willing to have him come live with me and to take care of him. Like I couldn't... handle it myself, honestly, and then I didn't want to expose my kids to the violence and to the, you know, like my mom had to lock all of her cabinets, and her refrigerator, like there was just, a line for me where I was like, I'm not going back. Like, I'm not going back to taking care of him. And I and I remember telling her that. But she didn't have a plan. And the last group home that he was in was actually like a situation that would have worked for him long term. It was the first group home that was designed specifically for people with Prader-Willi or other food issues. And they could handle even the behavior stuff. And he was there for like a trial period, I remember. And I remember feeling like such relief, like, it was a group home that was also like a working ranch. So there were animals. So he was busy and he had stuff to do with the animals, which he loved. And he liked the social aspect and all that. 


It’s the absolute PERFECT place for Alan. And he’s happy there. And Gina has a small sense of relief. And then…


Gina: For some reason, like within a few days of the trial period being over with, my mom withdrew him from the group home and said that it wasn't a good fit for him. And for me, that was like... the breaking point, where I was like, I can't, I cannot be in relationship with her anymore, like I just... because there was no plan and she fully expected, I think either my younger brother or me to take care of Alan or she was going to let him just become a ward of the state. And that was too painful for me. 


This is just a continuation of the confusing relationship Gina has had with her mother, Diane. There’s the appearance — the formal living room, the makeup when Dad got home from work, the need for other people to think things are okay when they’re not. And then there’s the reality. Throughout their childhood, Gina would hear her mother saying it was too much, that she needed help. And here is help — the RIGHT help for Alan — and she turns it down. So this is the end of Gina pursuing a relationship with Diane.


Gina: And that complicated things because I did want to have contact with Alan. It was a bit of an orchestration to, you know, try to like arrange to take Alan out or to visit him but not have to see her. But I would send him letters, and he would draw me pictures, and I would try to call at times when I knew Diane wasn't home so that I could talk to him. You know, if Alan had a medical problem, she would send like a group email to me and my brother and my dad and a few other family members. And so, like, I kind of saw that he had had some medical things over the years, but I never... in my mind, he wasn't fragile. And I think partly he wasn't fragile because, you know, he was like, I don't know, 6’2” and like 250 pounds, like he was not a fragile person. So in my mind, I didn't think... I didn't have any reason to think that he was going to die young. And then...


Gina is heading off on vacation with some friends, and when the plane lands, she turns her phone on, and she finds out that Alan is dead. The cause isn’t 100% clear. He had what appeared to be either an asthma attack or allergic reaction that resulted in cardiac arrest. He was 43 years old.


Gina: Any kind of loss, like the people closest to you, I think want to make meaning of it for you, you know, like they want to classify it some way, or like make sense of it some way, and so I think, you know, I felt misunderstood because I think a lot of people close to me were just rushing to make meaning of it for me, like, “Oh, like you, aren't you relieved, like you've been relieved of this burden. You're not going to have to take care of him,” or, you know, maybe that I was coming out from, like, the shadows of abuse in some way, which also didn't feel right, because that didn't... that just didn't ring true. But I think like what I wanted them to understand and what I want people to understand Is how deeply you can love somebody who has also caused you this much pain.

I think a lot of people thought I would feel relief with him gone, because I was relieved of the burden of having to take care of him. Objectively speaking, like, my abuser died, you know? He caused a lot of harm to my body. But it didn't feel that way. There was no relief. I just felt really sad. Like, immediately, unmistakably sad. 

And then the other piece of it was I felt like we'd run out of time. Like, I think there was a part of me that thought that maybe someday, like he and I will figure out what we meant to each other and like, I think I had a little bit of magical thinking, like, oh, you know, someday we're going to sit down and we're going to, like, talk about our shitty childhood and like... and what we mean to each other, even though, like, I knew intellectually he wasn't capable of that. And so, I'm left to decide what we meant to each other. And a lot of my grief has been untangling that question of what did, what did I lose? Like, when Alan died, what did I lose? 

Nora: What do you think you meant to each other?

Gina: I know without a doubt that as much as Alan was capable of feeling love, he loved me. I know that he thought about me. I know that he asked about me. I know he loved my kids. He got to spend some time with my kids. That was always a little complicated because I would never leave my kids alone with him, because I didn't know if he was safe, but he loved babies and kids, and I saw the joy on his face. So I do feel like he genuinely loved me, and I almost feel like in a way, it's probably the closest thing that I ever had to unconditional love, because I don't know that he was somebody who ever, like, held grudges or… I don’t know, like the things that you have in your normal sibling relationships where there's baggage and like, you know, ambivalence or sibling rivalry. I think it was just a very pure love. So from him to me, I feel like it was very... simple love.

And then for me to him, I think that that's where it feels a lot more complex, because I loved him, but I also was terrified of him. I always, like, had this weird mix of gratitude and guilt, like I felt really grateful for all the things like I'm an able-bodied person, so I think I was always really aware of how lucky I was that, like, I could do things that he couldn't, you know. I could drive a car, I could go to college, I could get married. Like all these things he couldn't do, I felt very grateful. And then I also felt really guilty about it. Like, why why doesn't Alan get to do all those things? You know, like there's all these aspects of life that he didn't get to experience. And I don't know if he felt that loss ever. 


Grief sometimes brings out the worst in us and the worst in our relationships. And almost immediately after Alan’s death, when Gina’s family gathered together...


Gina: I remember feeling like a lot of fear, like, oh my gosh, I'm slipping back into this orbit that I don't want to be in. I mean, at one point, we were all gathered at my mom's house and everybody was kind of playing their historic roles and the funeral hadn't been planned yet. And at one point my dad was like, can you go talk to your mother? And I said, no. I said, I can't. I can't do it. In my mind, I was like, I'm not going to do this anymore. Like, I'm not going to parent for you. And I remember, like, I got physically ill, like I walked out of the house and I threw up. And I feel like at that point I was like, I just… I'm done. Like, this is not the life. This is not my role. And thank goodness somebody did step in. I think they had a minister who came in and basically, like, mediated and sat down and planned the funeral with them. 


It’s August in Colorado. And Gina gets ready to say goodbye to her big brother… at a Christmas-themed funeral.


Gina: I remember like walking and like opening up one of those... it was like a Lutheran church with one of those huge, heavy red doors that I feel like every Lutheran church has. And I remember like this flood of air conditioning hitting me and then the sound of Christmas carols. And it was just like so appropriate for Alan, and I don't know that they told everybody that it was going to be a Christmas-themed funeral, because I remember like looking at people's faces when they walked in and, like, hearing all the Christmas carols. And I might be making this up, but I feel like there was like poinsettias or like something, like I feel like there was red flowers. Like I felt like it was like they really took the theme and ran with it. 

There was a lot of pictures of Alan, like there's a, you know, a table with a bunch of pictures of him, including a lot of pictures of like him seeing Santa, which is something he did well into adulthood. So it felt like in the end, even though it was a lot of like heartache to get there, it felt appropriate for him.


It honored him, and it honored her. The funeral got planned without Gina taking on her old role. Gina didn’t have to be the parent, the pastor, she just got to be a grieving sister. And all of those nos — moving out, not coming home from college, not planning the funeral — they’ve been big moments for Gina. 

But those big moments aren’t done for her. Spending so many years taking care of other people means that Gina still needs to learn how to take care of herself. How to acknowledge and honor what she lost and what she needs


Gina: I see my kids and the way they move through the world, and they're just not afraid, and they know that they don't have to take care of me. I get a lot of joy out of watching them have the childhood that I wish that I had had, you know, and the sibling relationship that I wish I could have had with Alan. But the flip side is if I think, like, I was that little,like I was as vulnerable as my 10-year-old son is and... this is what I was doing, I was cooking dinner. And when I was 12, I was chipping in my babysitting money to help pay the electric bill. Like the one thing that I still struggle with, like right now to this day, is identifying what I need. Whether it's like, you know, my husband asking me, like, hey, what do you want for dinner tonight? Like my mind will go blank. Like it's kind of eerie how it just almost like... do I need food? I wasn't even aware that I was hungry. Which one thing that was interesting is Alan had this insatiable appetite and sought food and I... am somebody who I'm not I'm not always aware that I'm hungry, until I'm like hangry until I'm, like, shaking. And I think that's a carryover from that. But I think honestly, like the more that I watch my kids, like have a need and express it and ask, you know, like it's like this phenomenon that I'm like, wow, that's really that's really cool. How do you do that?


This has been “Terrible, Thanks for Asking.” I’m Nora McInerny. We talked a lot about the syndrome Alan had. It’s called Prader-Willi syndrome. We learned there are different kinds of Prader-Willi. We learned that some people say PRAY-der Willi, and some say PRAH-der Willi. Another thing is that even with a diagnosis, sometimes the health problems associated with it are found later than would be ideal. You might know that already if you have someone with Prader-Willi in your life. But if you don’t and you’re curious, you can hit up the Prader-Willi Syndrome Association or the Foundation for Prader-Willi Research.