To Make Room for My Brother I Learned to Disappear

Hi, Esther. I'm getting married in just over a month, and while I am really excited and anticipating the event, I'm also concerned that I'll get in the way, get in my own way of experiencing joy. And getting married, you know, it's, well, it's a super happy occasion. It's brought up some difficult feelings as well. Some of the context behind that, my older brother, it's just the two of us, is non-speaking autistic and lives with my parents at home. And I think there's always been some comparison between the two of us. I don't think done by my parents so much, but I think between him and I, where I have always been hyper aware of the things that I could do that he couldn't. And I think the same goes for him. And in some ways, I think I've been surprised how moving away from home and getting on with my life, going to college and going on different adventures and ultimately now being in a serious relationship and deciding together to get married, it feels like my life keeps moving. Well, there's some stagnation just by the. By the realities of his disability and those limitations. And I guess my question for you in regards to all of this is how do I give myself permission to be happy at what I want to be one of the most joyful days of my life? And how do I not get in my own way? Despite being hyper aware of how my wedding might affect him, thank you. Fall is here, and that means the Pumpkin Spice Latte is back at Starbucks. It's the one we've been waiting for. So whether you're a fan of the original Pumpkin Spice Latte or ready to mix it up with an iced pumpkin cream chai, the new iced pumpkin cream matcha, or the new iced pumpkin cream matcha, it's the one we've been waiting for. So whether you're a fan of the original Pumpkin Spice Latte or ready to mix it up with an iced pumpkin cream chai, the new iced pumpkin cream matcha, or the new iced pumpkin cream matcha, or the new iced pumpkin cream matcha, or the new iced pumpkin cream matcha, it's the one we've been waiting for. So whether you're a fan of the original Pumpkin Spice Latte or ready to mix it up with an iced pumpkin cream chai, the new iced pumpkin cream matcha, or the new iced pumpkin cream shaken espresso, you can find your favorite taste of fall only at Starbucks. So whether you're a fan of the original Pumpkin Spice Latte or ready to mix it up with an iced pumpkin cream matcha, it's the one we've been waiting for. I don't know if there's an aspect of it that almost feels a little bit like a betrayal, even though I don't think it actually is. That's just where it sits. And the betrayal, I assume from what you're saying, is not that you're betraying him, but you're betraying your own silence. It feels maybe like a little bit of both. You know, I think it's actually not something that I hadn't thought about. I haven't thought about it until pretty recently, but like introducing the idea of secrecy and a secret in a family. And in some ways, like I said, we've been very open about how challenging his autism has been for him. But we all feel kind of protective. It almost feels like it's not my place, even though it's my story, too. When you say it's not my story to tell, your story is not that you have nonverbal autism. Your story is that you're growing up and have grown up with a brother who is disabled. Yes. And what it's like to live with a sibling in that kind of relationship. Yes. A part of it is how hard it may have been, how different. But a part of it is also what it taught you and the perspective on the world and on our lives and on what is possible and what is not and for whom that is deeply embedded in you because you had it on a daily basis in front of you. So it's not just the challenges. Yeah, it's a whole perspective. Okay. Tell me more because we just met. I'm not going to talk for you. There's a lot that you learn from having a disabled sibling, you know, like I mentioned in my question. I think we have both been so hyper aware of our differences. Before you go there, finish your thoughts. There's a lot you learn. What are some of the things that are coming to the wedding with you, that are coming to your relationship with you, and that are coming to the wedding with you? What are some of the things that are coming to the wedding with you, that are coming to the wedding with you? The way you conceive of life with you because he touches you on many levels. Yes. To start, that I am not the center of the universe. That I think I understood at a very young age that there are other needs that were more demanding and pressing than mine. I learned how to set my own emotions and problems aside at a very young age, I think, to make life easier for my parents. Did you do it and came out with a good sense of humility? Or did you do it and came up with too much of a sense of being self-effacing? I think there's a dose of humility, a lot of guilt. I think that's. I think that's what's coming. A big thing that's coming with me is, you know, in learning not to be or to be so uncomfortable with attention. And I'm very used to kind of stepping into the background. And now all of a sudden the wedding is thrusting me into the limelight. The center. Yeah, in a different way. And that makes me uncomfortable. And I think also, you know, I. I learned. I learned to be kind of private. Like, when. I always had good friends growing up, but it was. It was rare for me to have them over at the house. You know, like, they would come, but generally I'd go to their houses. And I kind of. Whether this was intentional or not, I kind of learned that having good things was gloating. He. Because he would watch me with my friends or I would succeed in something. And a lot of the time it felt like instead of being happy for me, it made him sad. And it made you guilty. It made me feel guilty. So that was one sequence. When good things happen to me, I look at him. I see his sadness. And it curtails my ability to enjoy the good thing. Yes. Because I feel instantly that what I. I have is something he doesn't have. It always sits in a comparison. Yes. And so, being in a relationship, getting married, having my own life, moving on, every single one of these major transitions in life are compromised experiences for me. Yes. Where the better they are, the more the voice of guilt. Tells me what? What does it say? How could you? Like, I think there's a lot of sadness in it. I do feel sad for him that he can't do a lot of these things. Like, I'm leaving him behind. And it's neither one of our faults. It's just what it is. But it makes me very sad. Sad is not guilt. Sad is you've been next to him and often helpful to him, too. I try. It's not always intuitive how to help. But yes, I do try. How do you communicate together? He has a letter board. It's like an alphabet board. Or an iPad. If it's an iPad, it can dictate with a speech button at the end. But either way. And in a way, I think because there's so much sensory overwhelmment and distraction baked into the autism that he has. Someone has to be there who he trusts, who kind of keeps him on task of communication. And so we do communicate occasionally, but it's arduous. And also I've never had a private conversation, just him and I. My mom, because she's his primary communication partner, has always been in the room. So I've never been able to say something to him and have him say it back or say something back, just the two of us. And what do you know about his experience of your upcoming wedding, marriage, leaving? My fiance and I have told him that we had no real expectations for him. We don't care if he needs space to go off by himself. And we told him that we want him to feel as free to participate in the ways that he can and come engage when he wants. And then he can go and be off by himself when he needs space and or feels overwhelmed or whatever's going on for him. Will your mother be able to be with you or will she need to attend to him? One of his aides who, comes to the house pretty often, they do stuff together, is going to be at the wedding the entire time. So I'm glad about that. It means both my parents will be able to, hopefully, I'm not sure how it'll actually pan out, but hopefully it means that they can just engage in the wedding. I'm not sure how that'll go. So you say, I've learned to put my needs aside. It has made me somewhat humble, but it has also made me sometimes conflicted about putting my needs forward. Yes. It's as if I just know my place if I'm in the background and if I can handle everything myself. But I've wished sometimes to be able to be more forward, to be able to have the attention on me, to be able to celebrate myself. But the minute I begin, I think I'm like breaking a taboo. Yes, it feels wrong. Right. And that's why we are here? Yeah. Okay. And wrong says what? It says you're selfish. How can you think about yourself when your brother is in the condition that he is? Why don't you know your place in the background all the time? Make yourself small, make yourself invisible. Make yourself needless? Yeah, I think I learned to make myself needless. At least that's what I said I felt, but obviously no one's actually that way. Are we clear on that? Yes. Are we very clear on that? At least intellectually. Let's go down from the head down. Let's travel for a minute. Are we really clear on that? Yes. I try to sit with that. Yeah, that's a major voice, as well as asking for things feels selfish. And I think I've felt both these things for my whole life. Was it reinforced? By my parents? Yeah, and by whoever else is around. But yes, was it reinforced or is that a self-imposed and then well accepted? I don't know. I mean, I think I do think it was reinforced. I don't know that again, I feel defensive. I think that's a big part of it too is like, I know how hard my parents have worked that I don't want to. Add more burden on them. Yeah. And so I can I feel guilty to even say that maybe they reinforced it, but. Because I know they've been trying so hard. But yeah, thinking back on certain things, I do have incidents I remember where I think as a kid, I learned to put my needs aside. What just came up? There's a story my cousin reminded me of several years ago. It was staying with us, my nuclear family when we were kids. And I had a goldfish bowl in my room. And my brother, he just saw the fish moving around and it looked, you know, it was like a stim where he just wanted to grab the goldfish and he did. And I came back to my room with the goldfish dead on my bedroom floor. And. My mom came in and, you know, I was upset. And I don't even fully remember what she said. But my cousin said it made a huge impression on her where my mom said that I, he didn't mean to and I shouldn't be upset or angry about it. And. I didn't even know that I should feel any other way. But my cousin told me how shocked she was that I wasn't allowed to be angry. And I think that's a big part of the confusion, too, is when things like that would happen, where do you put the blame? Because he didn't mean to. And yet, things happen. And you can have both feelings. Yeah. You can be angry and you can be sad and you can be understanding. Yeah. You can know that he doesn't know. And at the same time, that in itself sometimes is very upsetting. I mean, he's a smart person. It's not that he, like, he knows in grabbing the goldfish and putting, you know, and leaving it on the floor that that's going to kill the goldfish. It's not from a lack of comprehension. It's. Uh-huh. So what do you think your mom wanted to do to make sure he didn't have a reaction? What was being managed? What was she trying to manage in that? Mm-hmm. Mm-hmm. That's a good question. I think maybe me or us upsetting him further, because he does get so angry at himself. Right. That's what I thought. Yeah. Yeah. So she was managing his reaction, and she said, don't make a big deal, because if you make a deal, he's going to get so upset and I'm going to have to deal with another crisis. Yes. Another tantrum. Yes. As if. And that's. Actually, now that you say it, that's a big thing. Like, as if us managing our own emotions is protecting him. And so we often end up. The household feels like we're walking on eggshells all the time. Correct. Yes. We're not protecting him. We're managing him and protecting ourselves from his assaults. Yes. Right. Because he can be very. He can flare up and be very quickly reactive. And so we will do all kinds of things just to make sure that there is no explosion. Yes. And everybody learned to mute themselves? Yes. All of us. Mom, dad, and you. So your dad and your mom understand something about this. Yeah, we all do it. Mm-hmm. And has that been a conversation? Like, what you're talking about with me, has that come up between you and your parents? More so. More so in the last few years. Mm-hmm. And I do think things have gotten a little bit better as far as what people. What we all can acknowledge. But we are all still walking on eggshells. So I don't know how much. Even though now. Maybe the difference is now we're aware of it, but we're not actually making space for ourselves. Right. Not even when you're amongst each other? Yeah. If you say to your parents, I learned to efface myself. I learned to take little space. I learned to modulate my emotions and my reactions so that my brother wouldn't have a fit. I learned to make sure that I didn't burden the two of you because I felt that you have so much on your shoulders. So I wanted to be perfect, good student, good girl, good everything, so you wouldn't have to worry about anything. But in effect. Neither my needs nor my feelings much took precedence either because I felt you have so much on your hands already. Why bother you with me? Yeah. I think to the point where for a long time I didn't even know how to recognize my own feelings. Correct. I had ignored them for so long. And did you learn more about that? How do you mean? Did you learn to know you have them and to identify them and to name them and to meet them? I think going to college and everything I've done since, giving me some space has been really helpful and a good therapist so I have it's been a process but I have met them we're still getting to know each other though hello hello feelings of mine we have to take a brief break so stay with us and let's see where this goes support for where should we begin comes from quince hate to break it to you but now that it's august that means summer is almost over for some of you that might be a relief autumn means cooler weather which also means it might be time to find some cozy cold weather staples enter quince quince specializes in effortless high quality essentials like ultra soft organic cotton and premium mongolian cotton and high quality cotton and premium mongolian cotton and premium mongolian cashmere sweaters they're beautifully tailored built to last and transition seamlessly from morning meetings to a nice dinner out this summer I've been wearing quite a bit of quince linen I love 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pecan crunch latte have arrived and are ready to sip all season long or find a new favorite like the new iced banana bread latte that tastes just like fall in a cup you can find your favorite flavor your favorite taste of fall only at starbucks tell me if i was to ask you at this very moment how are you feeling and what are you feeling i feel honestly grateful the direction that you've taken the conversation feels i i was worried or maybe just feeling anxious that i would have to talk so much about just him but it's been nice too i'm glad you recognized that it's a lot more than that i don't know i guess i'm still practicing this so i'm going to invite the the part of you that says is there some space for me here the part of you that says i feel things i experience things i have needs i have i have needs i have needs and it doesn't mean that i'm excluding someone else that little voice that you've worked on in college in therapy that meeting with a part of you that has been kept on very low flicker and that is trying to become a little more of a flame i'm gonna meet her okay how is she feeling right now she began by saying i'm actually happy you invited me yes but there is so much when you say i'm happy we're talking about me and not about him that in itself says a ton but i just met you so i'm gonna let you put words to this about how else i'm feeling yeah and what it's like to feel that we're talking about you and not just about you know it's like can we talk about you period meaning without having to constantly finish the sentence with him that doesn't erase him that doesn't put him aside it just says that there is also he's always connected and in his front center of your awareness every moment maybe too much yeah not because you don't love him and because you don't care for him and all of that but because if he's hungry you're not automatically hungry and if he's cold you're not automatically cold i think my whole family we've gotten to the point where we're so anxious about his needs to try to as you say keep him in check not his emotions are often very volatile and so there's definitely you know a bit of fear in it it's unpleasant for all of us to watch him go through these outbursts and you know it's painful to watch that and it's also frightening i think sometimes i go back to when i was almost freezed like i did when i was a kid it's like i'm not going to be able to do anything i i i go back to that place are you aware of your own frozenness like right now i got you out of it you caught that because the more you talk about how he flares up and the more your face becomes flat like physically there is no affect i didn't know that but then suddenly when you smile that little one inside of you that says me too takes over and it's a it's a whole different face yeah well i guess how how do i get to a point where i'm not on eggshells where i can but you're on eggshells when your brother isn't around as well see the the thing now is how do you distinguish between situations in the moment that are happening and moments when you're gone so i have two questions right the first one is i want to go back to how am i not on eggshells what would happen if we switch that question to because the eggshells what they do is they don't let you not think about him because you're afraid that if you have 10 minutes of carefreeness when you come back there's going to be drama right so in effect you're never gone yes you think that is going to be drama at your wedding too i worry about it yes of course of course and it's not like far-fetched it's not fictitious but that needs to be how do you protect the space so that your wedding can really be about your wedding and that means that you don't constantly are looking over your shoulder yes and not in your own body let alone in your own event and how do you ask your parents to actually help you protect that and that doesn't make you selfish and that doesn't make you a bad sibling beyond just bringing the person to stay with him yes because you don't know if that's enough yes and you probably think that's actually not enough yes i'm just so programmed to watch for him that it's it's you're right i i don't really know how to turn it off actually even when i he's not around he's so internalized he's so internalized that he's not around he's always inside that you when the weather changes we need to know that it's time to take off the sweater yeah you don't know that the weather has changed so you keep your sweater on at all time yeah it's that when you dare you dare no doubt but when you're gone when you leave how do you create a situation where you can be with your husband with your friends with your family with yourself and i think it's also a bit of a feedback loop where i don't think that necessarily by not being anxious about changing the weather as you say will make him feel better but i do think we reinforce it sometimes by our being anxious can make him anxious and so forth and so forth so that's our loop little dance. We're all stressing each other out. It's all three of you the same, mom, dad, and you? I'm feeling this way. Yeah, or is there differences between the three of you? There are differences, but we're all on eggshells, I think. My mom, everyone's watching for changes in his affect, and she looks for kind of external things that she can control. Are you accompanied? Do you get support as a family? No. We have, I mean, there are groups that he goes to that he really likes, but it's actually been, this is also something that I didn't really even recognize as a kid that was unusual. I just, you know, we were just on our own doing, dealing with this. You don't have a group for parents that you're a part of or a group for siblings that you're a part of? I don't. My parents don't. You don't? They must. They have friends. I don't know how much they talk about this, though. No, no, I'm talking not just about their friends. It's about other parents with children who have children who have severe autism. I think they will meet with, you know, they're in like weekly groups. He goes to art classes or cooking classes. And the parents come with. And so all the parents will chat amongst themselves while, their kids are doing the activities. And you? No, I don't. Have you met other siblings? I've met, you know, even my, my fiance had a brother who has special needs, but not autistic, you know, it's, that's really the one, you know, it seems like sometimes all special needs get lumped together, you know? And so there's an understanding that comes from that, but they're about as different as night and day. Right. So, no, I have, I don't think I've ever had, or really even known that many people my age who've had a autistic brother or sibling. Okay. I wish for you to find a group for siblings. It's remarkably relieving to have your experience witnessed by others and recognized by others. You know, it's funny you say that I can completely imagine how helpful that would be, but I don't think it ever occurred to me in the first place because it almost would be like acknowledging that there's something that I need support with. Yeah. Yeah. That in itself will be, you have a need. Yeah. And your experience is different. You're not the mother, you're not the father and you're not him. You're the sibling. Yeah. And the sibling that has put themselves, you know, in such a place that they don't take up too much room so that they don't become an encumbrance is a very, very common reaction. And there's something about meeting people who intuitively from very young, understood something very deep before they could put words to it sometimes. He's two years older than you? Yes. Okay. So this is before you even could speak and it is inside your bones. It's in your nervous system. It's in your, the tightness of your face. It's in, it's not just small, it's in the way you breathe, you know, it's like you, you don't take much space in any ways possible and it was done originally to help him and even to help your parents at this point. It's not sure it's that helpful. That's definitely not. So besides the fact that it's not helpful to you, so these are all things you can learn. It's not irreversible in that way. And that doesn't change. Your alertness to him, your vigilance, all of that. But the reason being that you have your own marriage now that you enter and you want to be able to be in a relationship that is not a replica of the one you have with your brother or the one that you developed as a way of being in the world. Yeah, I think it does extend beyond my relationship with him. If anyone that I'm, if anyone that I'm close to or, you know, we're having some sort of conflict, I get very uncomfortable with people being upset in any capacity. It's like, I feel like it's my fault or my job to fix it. Like there was something that I did that set off a reaction. It's not rational, but it's, I guess like from a young age, you know, even going back to the fish story, the one thing I can control that will make people feel better, at least not make them feel worse is my own reaction to any situation. And so just shut it down. Even to talk about any of this feels like a big step. Are we very transgressive? For me, maybe. I'll take it though. Ah, there's the flicker. I think it's a good thing. We are in the midst of our session. There is still so much to talk about. So stay with us. We'll be right back. is putting safety at every turn. Learn more on the Uber app. Want smoother, brighter skin without adding another complicated step to your routine? Try Daily Microfoliant from Dermalogica. This exfoliating powder activates with water to gently polish away dull, flaky skin, leaving it feeling smoother and looking brighter. It's gentle enough to use every day. 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But I want to be able to enjoy my wedding and not feel that even on that day, I made myself tiny to make sure that I don't upset him. Yes. Or that my parents don't get all busy with him in the middle of the ceremony. All this has been here. You know, like you said, it's in my bones. But, you know, for better or worse, the wedding has added some urgency. Where, you know, my partner has pointed out multiple times to me, and I've been grateful for it because he's kind of helped me check this a little bit. You're self-flagellating. You don't need to feel guilty for being happy or having joyful moments. And is that helping you? When he says it, would you welcome it? You're able to let it enter? Yeah, it's been helpful, actually. I'm glad someone notices it and calls me out on it. It feels like he wants me to be able to be joyful. And so it's not out of an accusation. I think it makes him sad that I can't be there. So I am grateful for it. Yes, he wants you. to be bigger. To take up more space so he can have more of a relationship with someone rather than with some shadow of someone. Yeah, it would be nice for him. Nice for me too. Good, good. That's the flicker talking again. Do you know what I mean by the flicker, right? The ability to snap out of the flatness. Yes, and the part of you that says, me too. I want, I claim, I need, I wish, I desire. That has a sense that the I has some deserving that cultivates a healthy sense of entitlement. Yes. No, you'll be there for your brother. This is not a question of, it's kind of, how do I exist next to him rather than survive so he can exist? Yes. And I really want you to know that this is a question that many, many siblings ask themselves. You're not alone in this and you should know that there is, there's a collective voice about some of these challenges and I know that not all disabilities are the same but the reactions of people that walk on eggshells and carry the constant anxiety is actually far more similar because it doesn't matter where the flare-up comes from. If people organize their entire psychic being around preventing the flare-ups. Yeah, it's a common organization. Right. You know a lot more than you think you do. About? About how, when I say you know more, you have the ability to see yourself, to observe yourself and to know, like when your husband says, this flagellate. It's a common survival mechanism. But there is a moment in your life where you can begin to look at its effectiveness, how useful is it at this moment? Yeah. And toward him and toward you. That's something I've been thinking a lot about actually. Right, so that's what I mean, you know a lot, is you've been thinking about a lot of this. Yeah. And you think the wedding has kind of made this become more to the forefront and it's more vivid and it's a priority and it involves a few more conversations with your parents too. Use the wedding as an opportunity to say, you know, maybe we need to do more than what we are used to doing. And maybe this wedding needs to be organized a little bit more around me and a little bit less around him. Yeah. No, that would be selfish. How do I begin that conversation? I've been thinking. Exactly as you said to me, I've been thinking. Getting married makes people think, as you probably remember, mom and dad. And I've been thinking about how, you know, I'm not a very good mother, but I'm not a very good mother. I'm not a very good mother. listen to her and what does what would she say 10 things she would like to claim just in general in general and wedding whatever wherever you want to put it yeah you can take another deep breath i guess i don't even know where to start like what's an example oh i'm not gonna give it to you like what what could i claim which is the verb that resonates with you most i'm allowed i deserve i'm entitled i'm worthy of i would like i wish for i need i want i would like okay they're so gentle of them all you yes they're all it's okay they're all good but i think it's there's something nice about the the wanting okay i would like to be able to enjoy the company of my friends and family i would like to dance and not feel self-conscious about it i would like to be able to emote during the ceremony and not be mad at myself i would like to be able to dance with my brother during the reception i would like to show off my fiancee and not feel inhibited about it and this is intense yes and so needed and so deserved and you've never said any of this out loud no no i know i'd like to be able to cry and not apologize for it like i always do i would like if my brother does have a moment or an outburst at the wedding to feel in myself that it's okay and to not worry about the judgment of those there i would like to feel beautiful that day and not feel self-conscious about that either i would like to allow myself to be as feel as joyful as possible and hope that that's what my brother can and everyone else can hang on to and that that's an invitation for him to come join and i would like to have the strength and courage to be able to talk about all this in front of my parents and to my parents and i would like our family story to not be a secret because i don't think there's anything to be ashamed of he is who he is and by not being open about it i worry that we make him feel more ashamed and us and us it's very cathartic it's very moving it's very beautiful to see you come to life and i'm very grateful that you're here and i'm very grateful that you're here thank you and to see the tears stream down your face without apology and restraint thank you for inviting me here i think i needed the invitation to to be here i also think you may help your parents a lot by the way somebody has got to shake the earth somebody has got to shake the earth somebody has got to shake this up and i'm not even asking you about how the secret is maintained and who knows what and all of that because we can't take everything at once but if you say my wedding is a galvanizing moment use it yes will you let me know i'll let you know thank you so much esther thank you thank you so much too take care you too and congratulations thank you and dance yes and dance without self-consciousness yes okay thank you so much bye esther bye this was an esther calling a one-time intervention phone call recorded remotely from two points somewhere in the world if you have a question you'd like to explore with esther it could be answered in a 40 or 50 minute phone call send her a voice message and esther might just call you send your question to producer at estherperel.com where should we begin with esther perel is produced by magnificent noise we're part of the vox media podcast network our production staff includes eric newsom destry sibley sabrina farhi kristen muller and julian app original music and additional production by paul schneider and the executive producers of where should we begin are esther perel and jesse baker we'd also like to thank courtney hamilton mary alice miller and jack saul fall is here and that means the pumpkin spice latte is back at starbucks it's the one we've been waiting for so whether you're a fan of the original pumpkin spice latte or ready to mix it up with an iced pumpkin cream chai the new iced pumpkin cream matcha or the new iced pumpkin cream shaken espresso you can find your favorite taste of fall only at starbucks your favorite fall flavors are back at starbucks the one and only pumpkin spice latte and the deliciously smooth iced pecan crunch latte have arrived and are ready to sip all season long or find a new favorite like the new iced banana bread latte that tastes just like fall in a cup you can find your favorite taste of fall in starbucks Only at Starbucks.