To Make Room for My Brother I Learned to Disappear

0:00Hi 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 contacts 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 while there's some stagnation just by the realities of his disability and those limitations.

1:34And I guess my question for you in regards to all 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.

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3:47What's it like to listen? It's very difficult to tell the story, I think, and talk about it openly. My brother has been very open with the public about what he's been through, but I haven't. And I don't know, 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 till 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 and but we all feel kind of protective it almost feels like it's not my place even though it's my story too

5:09when you say it's not my story to tell your story is not that you have non-verbal 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.

6:02Okay, 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 way you conceive of life with you. Because he touches you on many levels. Yes. Well, to start, that I am not the center of the universe, that I think I understood at a very young age that there were other needs that were more demanding and pressing than mine.

7:02I 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 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.

8:02And that makes me uncomfortable. And I think also, you know, I learned to be kind of private. Like, I always had good friends growing up, but 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 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.

8:54when good things happen to me I look at him I see his sadness and it curtails my ability to enjoy the good thing because I feel instantly that what 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 where the better they are, the more the voice of guilt tells me what. What does it say? How could you? 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.

9:58And it's neither one of our faults. It's just what it is. But it makes me very sad.

10:08Sad 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, so 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, 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.

11:03My 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?

11:31My fiancé and I have told him that we had no real expectations for him where 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 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? And 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 will actually pan out, but hopefully it means that they can just engage in the wedding.

12:27I'm not sure how that will go.

12:33so 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.

13:54Are we clear on that? Yes. Are we very clear on that? At least intellectually. Let's go down from there. Let's travel for a minute. Are we really clear on that? And 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 whoever else is around. But yes, was it reinforced or is that a self-imposed and then well accepted?

14:42I 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, again, I feel guilty to even say that maybe they reinforced it, 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 when she was staying with us, my nuclear family, when we were kids.

15:43And I had a goldfish bowl in my room. And my brother just saw the fish moving around. And it looked, you know, it was like a stem 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.

17:00You 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 knows in grabbing the goldfish and leaving it on the floor that that's going to kill the goldfish. It's not from a lack of comprehension. 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? That's a good question. I think maybe me or us upsetting him further because he does get so angry at himself.

17:52Right. 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.

18:38And 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. 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 in the last few years. 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.

19:33Right. Not even when you're amongst each other? 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?

20:17Yeah, 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? Yeah, it's the last, I think going to college and everything I've done And 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.

21:05We have to take a brief break. So stay with us and let's see where this goes.

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24:59Tell 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 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 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 and it doesn't mean that I'm excluding someone else.

25:58That 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 going to 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 it a ton. But I just met you, so I'm going to 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?

26:59meaning 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 he's 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 I almost freeze like I did when I was a kid.

28:19It's like I go back to that place. Are you aware of your own frozenness? Like right now?

28:36I 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.

28:50Like 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 whole different face. Yeah. Well, I guess 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 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.

29:56Right. So in effect, you're never gone. Yes. You think that there's going to be drama at your wedding too. I worry about it yes 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

30:59yes I'm just so programmed to watch for him that it's it's you're right 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 is 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 it's that when you're there you're there 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 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.

32:08But 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 little dance. We're all stressing each other out. It's all three of you the same, mom, dad, and you? 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.